accidental linguistic sleuth

Happy birthday girls!

2007-12-22T23:17:00.000-06:00

The girls turned seven this week.

Seven!!?! How can this be?

We spent the morning at the new American Girl Store. It was absolute pandemonium, but the girls held their own and while their dolls had "spa treatments" and got new hairdo's, they chose several new outfits for their dolls. Afterwards, we had lunch with a bunch of family at a Japanese Steakhouse. I'd wager that they were two of the most enthusiastic guests our chef had ever served. LOL.

Happy birthday girls! Seven is going to be a great year.

Good things come to those who wait....

2007-11-29T22:43:00.000-06:00

Wait and fight like hell.

Anthem Ordered To Cover Costs Of Autism Therapy

Family Wins Case In Autism Coverage Lawsuit

Abby Tappert was diagnosed with autism two years ago. At the time, her mother, Jill, said Abby couldn't talk or socialize like other kids.

Like most mothers, Jill Tappert searched for treatment plans -- anything that would help her daughter live as normal a life as possible.

Today, Abby is quite capable of having a conversation at the lunch table.

She even has an extensive dinosaur collection that she loves to line up and name off.

Her mother credits Abby's remarkable progress to a treatment plan called Applied Behavior Analysis or ABA.

The only problem with the plan was it wasn't covered by their insurance company and it wasn't cheap. In fact, two years of treatment cost the family about $110,000.

But, Jill Tappert didn't give up.

She launched appeal after appeal and finally called in a lawyer.

Last week, an arbiter sided with the Tapperts and awarded them $110,000.

It was an important decision for the Tapperts and other families of autistic children across the U.S.

"I do think it sets a precedent for some families, families that have a PPO policy with Anthem including other states. (They) will be able to look at the ruling and go Anthem's policy is flawed. ABA is the standard of care in treating autism," said Tappert.

But, Anthem Blue Cross/Blue Shield said not so fast.

In a statement the company said: "This decision is not a broad-based declaration that ABA therapy is 'medically necessary' in all cases. To what extent this type of therapy should be covered...should be made by legislators and/or the division of insurance."

The ruling's implication is still unknown but the Tapperts said it's a step in the right direction.

Anthem said several insurance companies do not currently provide ABA coverage.

They said if a family would like to make a claim for ABA coverage they will evaluate them on a case-by-case basis.

Family Voices of Colorado helps families with the appeals and filing process. You can contact them at 1-800-881-8272 or via the Web at familyvoicesco.org

I pray that that Blue Cross Blue Shield is the first of many insurance companies who do the right thing. I hope they fall like a house of cards, the shameless miscreants. Can you imagine the outcry if insurance companies denied coverage for chemotherapy to cancer patients because it wasn't "proven" to work in every case? Or anti-depressants for mental illness for the same reason?

Way to go Tappert's! Thank you for fighting the good fight. I pray that your Abby continues to grow, blossom, and reach for the stars.

Everyone else, keep it up. We shall overcome!

The seventy-two returned with joy and said, "Lord, even the demons submit to us in your name."

He replied, "I saw Satan fall like lightning from heaven. I have given you authority to trample on snakes and scorpions and to overcome all the power of the enemy; nothing will harm you. However, do not rejoice that the spirits submit to you, but rejoice that your names are written in heaven."

At that time Jesus, full of joy through the Holy Spirit, said, "I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. Yes, Father, for this was your good pleasure.

Luke 10: 17-21

Tell us about when we were little

2007-11-26T20:48:00.000-06:00

Like a lot of little kids, my girls love to hear stories about when they were babies/toddlers. Funny ones. Sweet ones. Just stories that evidence a time when they were with us, but that they cannot remember.

I have told them such stories more than once and they always enjoy them, but the other day they asked for new ones and frankly, I was at a loss. Truth told, there weren't a lot of fun times when they were small. There were mostly tantrums. Aborted trips to the zoo and park. Quick exits from playdates and parties. Expulsions from Mother's Day Out and bible studies. Meltdowns. Self-injury. Aggression. Exhausting, baffling rituals. And meltdowns. Did I mention the meltdowns?

We don't have a lot of photos from age 15 months until the age of four, and video footage? Forget it. I never called out to dh, "Oh quick honey! Grab the camcorder! Abby is scratching herself til she bleeds again. And there's Emma Jean, scaling the cabinets to perch precariously on the edge and throw down the plates while reciting Lucy's lines from 'A Charlie Brown Christmas.' Again."

Good times. Good times.

Not.

I struggled to come up with some new little quip that would satisfy them. That would satisfy me even. But I drew a blank. I don't like to remember those days too much. Those memories are uncomfortable and they make my heart hurt. There is no way I can share any of that with them though, obviously. I was left feigning tiredness and telling them they'd have to wait until another time. But I am afraid I won't have much more to offer then either. Tales of Abby sitting and shredding the phone book for hours aren't exactly the Kodak moments they are seeking.

As a parent who witnessed a lot of bad days around here first hand and having seen them overcome so much, seen our family overcome so much, I don't want to look back. My hope lies in their futures, but they want these imagined happy memories painted and that canvass remains largely blank.

sigh...

Remember today that your children were not the ones who saw and experienced the discipline of the LORD your God: his majesty, his mighty hand, his outstretched arm; the signs he performed and the things he did in the heart of Egypt, both to Pharaoh king of Egypt and to his whole country; what he did to the Egyptian army, to its horses and chariots, how he overwhelmed them with the waters of the Red Sea as they were pursuing you, and how the LORD brought lasting ruin on them. It was not your children who saw what he did for you in the desert until you arrived at this place, and what he did to Dathan and Abiram, sons of Eliab the Reubenite, when the earth opened its mouth right in the middle of all Israel and swallowed them up with their households, their tents and every living thing that belonged to them. But it was your own eyes that saw all these great things the LORD has done.

Deuteronomy 11:2-7

Perhaps a Literal Land ex-pat?

2007-11-15T16:31:00.000-06:00

My brother sent this to me. I could not resist.

True Story:

A company had a "going away" party for a lady in their Little Rock claim office.

One of the supervisors called a Wal-Mart and ordered the cake.

He told them to write: "Best Wishes Suzanne" and underneath to write "We will miss you".

What Autistic Girls Are Made Of

2007-08-19T20:12:00.000-05:00

What Autistic Girls Are Made Of is an excellent piece published in the NYT Magazine earlier this month that explores the differences between boys and girls with autism. As stated in this rare gem, girls and women on the spectrum are a grossly under researched and under served subset in the autism community.

I found the descriptions of young girls with Asperger's and autism to be accurate reflections of my experience as the mother of two girls on the spectrum.

I enjoyed the piece and was grateful to see some attention being turned to girls and women. I have speculated for years that the ratio of 4:1, boys: girls, is not a figure that has been irrefutably proven as fact. I think it is far more likely that females are simply undiagnosed or misdiagnosed because they present differently than their male counterparts and societal norms allow for their unique traits to be overlooked more easily.

I have to admit that the accounts of what young women face were not exactly encouraging. I cried a little bit, both for those girls and my own. All Jimmy and I can do is keep fighting for them and working with them. I know that their futures are secure in the Lord. That He has not carried them this far only to abandon them at the precipice of adulthood. Despite understanding these truths intellectually, my heart heaves when I think about what the future could hold for them.

For our family.

For me.

How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?

Look on me and answer, O LORD my God.
Give light to my eyes, or I will sleep in death;

my enemy will say, "I have overcome him,"
and my foes will rejoice when I fall.

But I trust in your unfailing love;
my heart rejoices in your salvation.

I will sing to the LORD,
for he has been good to me.

Psalm 13:2-6

Shortstack

2007-08-12T00:49:00.001-05:00

My brother took the girls to the circus today. This is an annual outing that the girls really look forward to, and afterwards talk about, until the next year's outing.

Today, my usual routes to get the girls from here to there were all closed, so I ended up going the "long way."

The "long way" included a stretch of highway that I drove for two years between our home and the therapy center where both girls had ABA therapy. As we drove "the long way" to my brother's house today, we passed a faded IHOP billboard featuring a tall stack of pancakes.

I had forgotten about this billboard until we passed it today.

For two years, Abby had to see this roadside pictorial. When I say she had to see it, I mean she HAD to see it.

It was part of our driving ritual for Abby to spot this billboard. If she missed it for any reason, I had to take the next exit, loop around, re-enter the highway and drive past it again so that she could call out, "PANCAKES!" Otherwise the remaining three miles were comprised of extreme shrieking and tantruming.

Why Abby needed this billboard of pancakes was always a mystery. She had never eaten at IHOP and didn't like pancakes. Nonetheless, this billboard remained a huge thorn for a year and some change.

Today when we drove past it, inexplicably and for what remains an unidentifiable reason, I burst into tears. Huge, messy sobbing tears.

It was so bizarre. I could no more tell you then, than I can now, why that sun bleached billboard featuring a stack of pancakes created such a reaction in me, anymore than I could tell you why that billboard, though brighter at the time, consistently provoked a similar reaction in Abby for two years.

Autism is so weird.

"Can you fathom the mysteries of God?
Can you probe the limits of the Almighty?

They are higher than the heavens—what can you do?
They are deeper than the depths of the grave—what can you know?"

Job 11:7-8

Isn't it ironic

2007-08-03T00:05:00.000-05:00

I recently posted that my girls now "know" that they have autism. I say "know" because while they understand that the word applies to them, they do not know what it really means.

Today, we were leaving Super Target and I heard Emma Jean singing to herself, though rather loudly. I asked her for an encore and she obliged singing:

"I love my autism.
I love my autism.
I am superb at remembering facts, but making friends is so abstract.
I love my autism."

This was sung to the tune of a bible song called, "What an Awesome God We Serve."

LOL!

Later, they were sitting at the dinner table of a friend's house when Abby abruptly asked for a show of hands of everyone who had autism. My friend has one son on the spectrum and one daughter who is NT. The NT daughter kept insisting that she was autistic. She just couldn't stand being left out.

I fear our little discussions as of late may have unintentionally created autism elitists.

Hee-hee...

After an all-night march from Gilgal, Joshua took them by surprise.

Joshua 10:9

Postcards from Literal Land

2007-07-31T23:33:00.000-05:00

On a recent Saturday, the summer season of the girls' baseball league ended. They had a game, then afterwards there were closing ceremonies and a picnic. All the kids received trophies. The girls were so excited. They have been itching for a shiny plastic trophy for awhile now.

While I was oohing and ahhing over their awards, I asked Abby, "We'll have to show Daddy this when we get home. What will Daddy think about your trophy?"

She replied, "That it's not breakable."

************************

Earlier that same day we were driving to BFE where their games are and as usual, I was listening to the traffic report. It is on a local talk radio/news station. I try to pay attention when the news comes on between the traffic reports because it is always full of terrible stuff and I don't want the girls to hear it. I guess I spaced out though because suddenly the girls were in hysterics in the back seat. In the course of trying to calm them down and get to the bottom of why they were freaking out, I asked them what in the world had gotten them so worked up.

Abby tearfully and with trembling, "I am scared! I don't want fire arms!! I don't want fire arms!! Mommy what happens for someone to get fire arms??!?" She was frantically waving her arms out in front of her.

At first I couldn't imagine what the heck she was talking about, then it hit me. I realized that I had not turned down the news and they had done a report about some criminals that had been apprehended who had firearms.

And thusly, an impromptu gun safety lesson was had in the van on the way to baseball.

Never a dull moment. What I wouldn't give for a dull moment.

He will yet fill your mouth with laughter and your lips with shouts of joy.

Job 8:21

Even though I don't know you...

2007-07-28T01:54:00.000-05:00

We spent the late afternoon and evening at a swimming club. While there, I noticed a long-legged preteen/teen. She was super cute: Blond, Louise Brooks haircut, doe-eyed and pretty. She looked a lot like I can imagine Abby looking at that age, only Abby would be a brunette version of this girl. I noticed her right away. And almost as immediately, I pegged her as one of "our kind." Just by watching her, I knew she was on the spectrum. No, she didn't freak out, flap or line things up, but I could just tell.

I watched her throughout our stay at the pool. I grew more convinced as dusk turned to night and I saw her mostly tracing and retracing the parameter of the pool and engaging in all types of aut-behaviors, albeit subtle ones. I tried to match her to a parent. I always do whenever I think I spot an aut-child. I want to know, just in case something autstic-ky breaks out.

At the end of our time at the pool tonight we were exiting the changing room, the girls were showered and in their night clothes, and we literally bumped into this beautiful girl. She stopped in her tracks and pointed to Abby's nightgown (largely hidden under a terry robe) and said, while pointing to it, "I really like your nightgown. I have one just like it."

I swear it was like hearing a slightly more mature voice playing back one of Abby's most commonly trotted out scripts to initiate conversation.

I immediately sought to make eye-contact with the child saying, "Thank you. We like this nightgown," while pointing to Abby and saying, "This is Abby. What is your name?"

Her response?

"I am playing a memory game," as she walked off.

LOL.

My aut-mom friends laughingly say I can spot 'em after just "two flaps and a toewalk." And for the most part, I have to agree with them; I really can.

As she walked away, very quietly humming and talking to herself at turns, I found myself feeling bittersweet about both my observations of her over the course of the evening and our brief interaction.

She could be my High-Functioning Autistic Abby, fast forward 6 years.

It broke my heart a little bit.

Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. For we know in part and we prophesy in part, but when perfection comes, the imperfect disappears.
1 Corinthians 13:6-10

So "IT" finally happened

2007-07-24T00:15:00.000-05:00

One of my daughter's asked me if she had autism.

We were walking back from the market when we were on vacation last week in CA and I saw a sign on a building that read "Center for Autism Research," and I declared I wanted to go see what that was about.

It came so totally out of the blue, Abby's question that is. I just casually answered, "Yes," and told her it was no biggie; it just meant that her brain worked differently than most people's. Then she asked if her twin had autism too and I answered that she did, but hers was a little different and had a different name, "Asperger's Syndrome." She didn't ask for any further explanation at the time so I did not explore her thoughts. Her sis said nothing about it at all (HIGHLY unusual).

Today, we were at a drugstore picking up some meds for dh who is away for the summer and she asked about it again. I still remained truthful, but general in my answers, although this time I added that we knew lots of kids who had autism or AS and I named a few of them. Then she asked me if dh or myself had it, and I was kind of stumped as to how to answer because I know that if I were assessed for ASD when I was a child, I would undoubtedly been dx'd with AS, but obviously in Podunk, Texas 1973 no such thing was going to happen. So I told her, as generally as possible that her dad had some other things about his brain that made it unique (he has ADHD that was undiagnosed until he was an adult) and that no one knew much about autism when mommy was little, but that I probably had the same kind that sis does.

She didn't have anything further to say on the matter after that and again, her sis said nothing.

I have known this day would come. They are too high-functioning and immersed in the vanilla world for these questions not to be asked, but I had counted on a few more years.

I am feeling pretty unnerved and absolutely unsure as to how to proceed.

Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.
James 1:4-6

A league of their own

2007-05-05T21:43:00.000-05:00

The girls had their first baseball game today and their team (The Red Sox) WON!

They play in a local league for kids with disabilities. It is cool because the teams are assigned based on the child's functioning level. The team the girls are on is comprised entirely of kids with HFA and AS. Each child is paired with a "buddy," a teenage volunteer who helps them learn the game and makes sure everyone on the field is safe. They have the same buddy the whole season. These "buddies" are awesome.

I was a little nervous about the league. As much as I am ashamed to admit it, I was scared the whole endeavor would look weird and sad. I just kept picturing the developmentally delayed kids in high school at P.E.

I could not have been more wrong. All the kids had a blast and other than the "buddies" on the field and in the box, the whole thing looked pretty normal. Well, as normal as things ever look when a bunch of kids with autism are together. LOL!

The other great thing is that all the parents in the stands are obviously parents of kids on the spectrum. They seem like a fun and supportive bunch.

I am so glad I fought the urge to withdraw them from the league because of my misplaced misperceptions.

All that's left for me to say is, "Thank you God!" and "Play ball!"

"My soul will boast in the LORD; let the afflicted hear and rejoice."
Psalm 34:2

Interesting study released about autism and siblings' development

2007-04-30T01:19:00.000-05:00

Younger siblings of children with autism are at risk to suffer from delayed verbal, cognitive and motor development in their early childhood years.

This finding is the result of a research project carried out by a staff headed by Prof. Nurit Yirmiya and doctoral candidate Yifat Gamliel of the Hebrew University of Jerusalem and Dr. Marian Sigman of the University of California, Los Angeles.

In their research, they found that some siblings of children with autism – ranging from fourteen months to four and half years -- were diagnosed with delayed verbal, cognitive and motor development. After the age of four and a half, most of those children were able to close the gap between their development and that of other children of the same age who had siblings with normal development, except for some small delays in verbal abilities.

The results of this research have been published in a special issue of the Journal of Autism and Developmental Disorders that was devoted entirely to the subject of diagnosis of autism in very young children. The issue was edited by Prof. Nurit Yirmiya and by Prof. Sally Ozonoff of the M.I.N.D. Institute at the University of California, Davis. They reported finding that 30 percent of those children with older siblings with autism were found to have delayed development in the three areas studied, as opposed to only 5 percent in a comparison group (children whose siblings did not suffer from autism).

The reasons for this phenomenon, says Prof. Yirmiya, can be traced to the genetic tendency of children in the former group to carry an endophenotype of autism (an hereditary characteristic that is normally associated with some condition but is not a direct symptom of that condition). "Siblings of children with autism are likely to inherit genes that will cause a weakened expression of autistic symptoms," she explained. These can take the form of delayed linguistic abilities, difficulties in expressing feelings and in making eye contact, and in social interaction.

Prof. Yirmiya said that such problems cannot be traced to an imitation of the behavior of the older sibling with autism. "The children who were examined in the research had other models of behavior which they could have imitated besides their siblings with autism, such as parents, friends or other (normal) siblings in the family with whom they had frequent contact," she asserted.

The research tested the behavior of 39 children in Israel who had older siblings with autism. The research also involved a comparison group of children with older siblings of normal development. The children in both groups were examined at the ages of four months, 14 months, 24 months, 36 months and 54 months.

The results of the research showed that there were no significant differences between the two groups at the age of four months. Most of the developmental delays were found to appear in the first group from the age of 14 months until the age of four and half. After that, most of those in the group of siblings with autism were able to close the gap between them and the children in the comparison group, with the exception of a few children who persisted with some difficulties in verbal expression.

Prof. Yirmiya said that follow-up work should be undertaken into the elemental school years in order to determine whether there are any problematic symptoms, such as learning difficulties, since these sometimes come to the surface at a later age.

Prof. Yirmiya said that while the research does illustrate some developmental problems with siblings of children with autism, the fact is that to a large extent these problems resolve themselves at a young age without any intervention. Therefore, it is not clear whether prevention programs should be recommended for such children. especially considering the burden that the families are already experiencing.

I think the findings of this research are fascinating. I am going to contact the doctor who dx'd the girls and see what she has to say. If she has anything to add, I'll post.

For there is nothing hidden that will not be disclosed, and nothing concealed that will not be known or brought out into the open.
Luke 8:17

better when we're together

2007-04-29T01:34:00.000-05:00

After 14 years of marriage, Christy and Jeff Garner say they are beating the odds.

About four in five couples who have a child with autism get divorced, according to the National Autism Association.

"We're doing really well, then," Jeff said chuckling.

Autism is a great strain on all families affected by the disorder and the Garners are no different.

Their 4-year-old daughter, Josie, was diagnosed three years ago with moderate to severe autism, a developmental disorder that impacts social interaction and communication skills.

This little girl loves to cuddle with her dog, Baxter, listen to music by the Cheetah Girls and shop for, buy and wear any color of Crocs shoes.

But she has developmental and emotional needs that put a strain on family, finances, careers and relationships for her parents and big sister.

"Stress on parents of children with autism is higher than in parents of children with other disabilities," Dr. Diane Edwards told a group of families at a Casper Autism Society meeting.

"Your kids do things that embarrass you," said the Casper developmental pediatrician. "And the stress becomes even worse, when everyone thinks they have the solutions to your problems."

The time and expense of caring for a child with autism is another strain. According to the National Autism Association, a family will spend an estimated $40,000 to $70,000 a year on therapies and resources for a child with autism.

Several families we know who've been drafted into life with autism haven't made it and it is easy to understand why.

Jimmy and I feel very blessed that our relationship has not been torn apart by the girls' ASD diagnoses. There have been times of tremendous strain and isolation from everyone we know and from one another (despite living under the same roof). The toll of the daily stress is impossible to measure, but almost 6 1/2 years into our lives with the girls we are still soldiering on together. We get about one date a year and we never have any money for extras, but we have found ways to keep our sanity and keep our relationship in pretty good shape. The hardest part was letting go of the way we thought our lives would look as a family and as a couple and accepting that our lives do not resemble the lives of most people's that we meet. Discovering contentment in the little joys that come with living in the now and harnessing inner strength we never knew we had are what keeps us going. And never forgetting how to laugh. We could not survive without being able to laugh in the face of some of the most unimaginably dark times.

As autism awareness month comes to a close, I want to remind people that behind every child with autism there is a family trying to keep it together. If you know someone whose family is affected by ASD, I ask that in addition to loving on their kiddos, love on the moms and dads too. They need your patience, encouragement, and support as well.

On May 1st, Autism Awareness Month will be over, but for the families who are affected by the disorder, it never is.

Though one may be overpowered, two can defend themselves.
A cord of three strands is not quickly broken.
Ecclesiastes 4:12

"Your child has autism. Good luck with that."

2007-04-24T00:00:00.000-05:00

"Your child has autism. Good luck with that."

In other words, "Here's your hat. What's your hurry?"

That was our experience and it is the experience most parents have when the evaluations have been finished and the psychologist hands down the diagnosis of autism.

This article is a good read. It describes what many parents go through just after the diagnosis and then year after year as they struggle to get help for their children while struggling to keep their families together.

Their children's autism consumes them. It commands all of their attention to a point where when a stranger asks them to describe life as they now know it, they cry.

"People," Laurie says, "have no idea."

Like all parents of children with autism, their children's diagnoses first devastated them, then overwhelmed them.

In the midst of their grief, they discovered that they were pretty much on their own.

There would be no government outreach worker to advise them; there would be no one guiding them through the dizzying array of therapies out there for their child. There would be no one helping them hire therapists and consultants -- if they could find therapists and consultants who didn't have waiting lists.

"For me," Jannise says, "when I first got the diagnosis, it was a feeling of completely being lost, of not knowing what to do, of not knowing how to do it.

"And there was a lack of support from the system, too, because it was like, 'Okay, you've got a diagnosis, now go away."

Click HERE to read the full article.

But now I urge you to keep up your courage, because not one of you will be lost; only the ship will be destroyed.
Acts 27:22

when the other shoe drops...

2007-03-28T23:31:00.000-05:00

In January, a friend called me after the unthinkable happened: Her son had probably been molested by a teenage boy that she had nannied for years.

She reported the incident to CPS, as required by law, and they closed the case because the perportrator did not live with them and would no longer have any access to her son. It has been three months now. Three difficult months. She called me one day suicidal. I convinced her to call her doctor for some xanax and I learned that she had stopped her anti-depressant abruptly a month before. I had no idea she even took anything. She got the meds and got those back underway. The next day I went to her house and made her call an excellent Christian counselor and she began to see her weekly. Throughout this time, the subject of her son and what had happened came up periodically, but when I pressed her about what she was going to do, she was vague. In the mean time her grandmother, who she was very close to, passed away. I decided not to say anything further about her son's situation. I knew it had to be her decision and in her time.

Today, she called me to come over and help her email some things. Her son was home from school recovering from strep, so it was the girls and I and the two of them. Her younger daughter was at preschool. We were visiting at her table and she said that the doctor they had an appointment with to figure out how to talk to their son and how to proceed had told her that he could not see them until she called a local advocacy agency. She told me she had called the agency and they told her they could not speak to her unless she had an open case with CPS or the police department. She asked me, "What should I do?" I reached across the table and put my hand on hers and answered, "You know what you have to do." She said, "What about right now?" And I nodded.

She made the call. The dispatcher sent out a policewoman right away and what had started out an ordinary day took an unexpected turn.

I called my SIL who lives nearby and asked her if I could bring her the girls for awhile. Mercifully, she agreed without asking any questions. Shortly after I returned from dropping them off at her house, the police arrived at my friend's door.

We situated her son in another room and the policewoman began the interview. She told my friend that she had to speak to her son and would have to ask some blunt questions. I asked her if she knew anything about autism and then explained a few things that she should expect when interviewing an autistic child. I told her that he was not impaired cognitively, but his expressive language was impaired. I wanted her to know that if his answers were round about or unusual, that it did not mean that he didn't understand what was going on or that he was lying. Then we brought the boy in and the police officer began to speak with him about why she was there and the questioning began.

He did such a great job. He was so brave. I was very proud of him. Through the course of the interview, we learned that the molestation had been going on for a long time, at least a year and probably longer. It happened in their home, when his mother was there. It happened the day that she discovered her son in the bathroom with the teenager at a restaurant. It had happened a lot. He was naively explicit in his answers. It was gut wrenching to witness. His sweet face, his fidgeting, his subtle embarrassment. Oh my gosh. I will never forget his innocent expression while describing such a adult acts. It was the worst thing I have ever been party to. Ever. Not even the day the doctor told us Abby had autism was as awful as this scene was.

Afterwards, the policewoman told us what to expect next. In the mean time, my friend's husband came home from work. He was not in the room for the interview. He kept their daughter entertained while their boy spoke to the policewoman and then their boy left us and her husband joined us while the officer explained how things would proceed. The policewoman left and my friend said to her husband, "It definitely happened. It happened many, many times." He said nothing. My friend turned to me and asked me if we could go for a drive, so we left.

We got in the car and she was silently crying, fighting to maintain her composure. I told her she did not have to keep it together for me. I told her to let it out because when she went back in her house, she had to behave very normally. Her son cannot make an association that by talking to the police he had made his mother upset. She collapsed, sobbing. I was crying along with her on the inside. On the outside, all I could do was hold her hand and listen.

We began to drive, driving with nowhere to go. There was nowhere to go to get away from this. She said, "How could this happen? What kind of mother am I not to know that this was happening? In my house? In my own backyard (literally)?" I tried to reassure her that even fathers do this kind of thing and the wives do not know. I told her that the people who perportrate these kinds of heinous acts are so manipulative and intentional that they ingratiate themselves to the caregiver while they groom the child for molestation. I tried to assure her that this was not her fault. That her family was an innocent victim, that she was not complicit. That this disturbed boy acted on his own. Then she asked me if I ever got so mad at God. I answered truthfully that I have and that God and me have gotten into more than one Mexican standoff. I told her that He knows that she is mad and that He wants her to talk to Him about her anger, that He does not want her to keep silent and carry this alone. I told her that God can handle her anger, that He is big enough to take it and I begged her to give it to Him. Everything I said to her, I was saying to myself. I am angry at God too. I don't understand this kind of thing. Why doesn't He stop it? Why would He allow this to happen to any child, much less a disabled child? Lord have mercy. This world is so broken and there is nothing we can do to fix it.

Please pray for my friend and her precious family. Please pray for all of the people who are about to come into their lives as this ordeal really begins to get underway. Please pray for me.

This horrible incident has been so eye-opening for me. I have been forced to face some terrible truths about how vulnerable my children are. How wicked the world is. Inexplicably, unbearably wicked.

I do have to share one humorous moment that occurred in the midst of this horror show. After the policewoman had finished interviewing my friend's son, she asked him if there was anything he wanted to ask her. He solemnly answered, "Yes." We were all on the edge of our seats waiting for what he would ask. He looked her dead in the eye and asked, "What's your favorite flavor of ice cream?" And without missing a beat she replied, "Why chocolate of course. What about you?"

"I like chocolate too. With sprinkles."

We are pressed but not crushed,
perplexed but don't despair.
We are persecuted but not abandoned
We are no longer slaves
we are daughters and sons,
and when we are weak
we are very strong

And neither death nor life
nor present nor future
nor depth nor height
can keep us from the love of Christ
And the Word I need
is the Word that was
who put on flesh to dwell with us.
In the beginning....

~From Word, by Sara Groves

The Girl with a Boy's Brain

2007-02-17T17:12:00.000-06:00

The following is an excellent article from Psychology Today called, "The Girl with a Boy's Brain."

Little is written about girls and autism or Asperger's Syndrome. I was pleased to come across this piece and I hope anyone who stops by my blog will take the time to read it.

There is so much of me in the girl profiled in the article and so much of Beans and Abby too. I am always thankful when I find stories written about girls who have wrestled with ASD and found their way to a satisfying life.

Happy reading!

Kiriana Cowansage can run complex neuroscience experiments and sketch beautiful portraits. She melts at the sight of an animal, but she balks at the concept of love. Such paradoxes define women with Asperger's syndrome.
By:Carlin Flora

"Don't step on that—it's not a rug!" warns Kiriana Cowansage. It's a 9,000-piece puzzle of the astrological heavens, half completed, which she's putting together on the floor of her brightly colored studio apartment in Manhattan's West Village.

Kiriana, a 24-year-old graduate student, is enamored of details. She's also easily absorbed: A week ago, she worked on the puzzle for 10 straight hours, without pausing for so much as a sip of water. A clothing maven, she's fashionably put together in chunky jewelry and a black minidress with billowing sleeves. But she'd rather stay home with those cardboard pieces than dress up for a night out. She's pretty—slender and pale, with innocently round eyes and long brown hair—and yet she's never had a boyfriend. Though smart enough to have earned herself a spot in a top neuroscience program, she often gets lost in her own neighborhood.

Such perplexing contradictions are the hallmarks of Asperger's Syndrome (AS), with which Kiriana was diagnosed when she was 19. AS is a condition on the high-functioning end of the autism spectrum. Its sufferers are successful in many realms of life but tend to have obsessive interests. They have trouble reading people and connecting with them. And they can have faulty sensory processing systems that leave them confused in hectic or unfamiliar settings.

Kiriana fits the AS profile quite neatly. What makes her exceptional is her gender. While the overall prevalence of Asperger's is 20 to 25 per 10,000 children, it's much more common in boys than girls. We don't understand what causes autism and Asperger's, or why more boys have these syndromes than girls, but some scientists conceive of them as expressions of extreme "maleness"—a talent for systemizing as opposed to empathizing.

Other experts attribute some of the gender gap to the widespread misdiagnosis of girls. "Girls are pretty neglected," says Shana Nichols, who specializes in treating girls with AS. Most of what we know about the condition is based on research on boys; theories about how it manifests itself differently in girls stem mainly from anecdotal evidence. Researchers agree that girls with AS tend to be more anxious and less aggressive than the boys. And during their teenage years, they are at an increased risk for awkward sexual situations and even date rape because of their inability to interpret social cues and their tendency to take statements literally.

When Kiriana was 2, her mother, Melissa, an English teacher, thought she was gifted because of her verbal precocity and started a diary of her toddler's amusing comments such as, "A bee fell out of my mind. What's a mind?" But Kiriana had an aggressive streak that was less endearing. One entry notes how she "tried to find a picture in the encyclopedia of an animal attacking a person, chewing him, and leaving the bones." Another reads: "When not allowed to do something, she screams in a piercing falsetto."

When she was 4, Kiriana became infatuated with dinosaurs. It was merely the first in a long series of obsessions. Once every picture in The Wonderful World of Prehistoric Animals by William Egan Swinton was emblazoned in her mind, she moved on to poisonous insects, then reptiles—a phase her mother nurtured by sending her to a lizard-themed summer camp.

In school, Kiriana barely spoke at all. One teacher feared she was deaf. "She pretty much refused to interact with other kids," says Melissa. She was often distracted—but not in the ricocheting manner of a kid with an attention-deficit disorder. "When the teacher called on me, I was frozen," recalls Kiriana. "I was often accused of not paying attention or of being on a different planet, but I was actually paying close attention to something else."

Since teachers are unlikely to flag kids who excel in written work no matter how quiet they are, many girls with AS are overlooked for special education, says Michael John Carley, director of GRASP, a supportive network for people with AS.

One teacher noted that "Kiriana had many problems learning the square dances and musical games. Changing direction or actions at musical cues appeared to be quite difficult for her."Struggles with spatial orientation earned her scorn on the playground; lacking an intuitive sense of direction, she repeatedly kicked the ball into her own team's goal. She eventually refused to play at all. She also refused to call any of her classmates by their nicknames, because it seemed too familiar. "It was like I had an alien complex," she says. "The result was that they treated me like an alien."

At the behest of a teacher at her private elementary school, Kiriana finally did get tested for disabilities. The results were inconclusive, and no one suspected autism in any form. "I knew she felt a little different," says Melissa. "But I never really thought anything was wrong with her."

Girls are generally recognized as superior mimics, says Tony Attwood, a pioneering Asperger's researcher. Those with AS hold back and observe until they learn the "rules," then imitate their way through social situations. But for a girl like Kiriana with undiagnosed Asperger's, her ability to manage her symptoms better than a boy can be less than a blessing; often it's a curse that keeps her suffering in silence.

"Girls can fake it quite well," says Liane Willey, a psycholinguist with AS who describes how she assumes different personalities when switching social gears in her autobiography, Pretending to Be Normal.

Kiriana's similar strategy amounts to remembering and rehearsing scripts. When she walks into a clothing shop, for example, she pulls up a mental dialogue box: "No thanks, I'm just looking," is what one should say if a saleswoman offers help. But as Attwood points out, such playacting is not intuitive, and is therefore exhausting. Looking around Kiriana's apartment—at her collection of colored Easter eggs and logic games, her Edward Gorey books and whimsical drawings—it occurs to me: She's a successful young woman who still inhabits the magical domain of a child. I'd anticipated an awkward encounter based on what I knew about her syndrome. But she was poised and attentive. She smiled and laughed while we spoke, displaying a wry sense of humor. Her eyes wandered to the side as she formulated her thoughts, but the conversation flowed. Though her demeanor was cool, she answered questions enthusiastically and thoroughly. A little too thoroughly at times: I could see how some would find her company exhausting.

Many children immerse themselves in creative projects, but Kiriana, like most kids with Asperger's, was an extreme case. "We didn't see her that much, honestly," Melissa says. "Every now and then I'd pass her in the hall, but she was always working on something." Kiriana never had a lot of friends, but she consistently had at least one close confidante, invariably a sensitive, reliable girl. The boys would provoke her—say, by stealing her pencils. Over time, she began to suspect that any time a boy spoke to her it was to mock her. She became defensively standoffish. "I just wanted them not to talk to me, so I pulled together as much blunt sarcasm as I could and established myself as a weird, unfriendly girl."

To any animal that crossed her path, however, Kiriana was the warmest creature imaginable. On rainy days, she would gingerly pick up earthworms from the sidewalk and move them to the grass. She once rescued a stray kitten that her neighbor's Rottweilers were hungrily circling and took her home.

At the age of 9, Kiriana, ever the scientist, asked her mother, "Does everyone see, hear, smell, taste, and feel exactly the same thing when they perceive the same object?" Around that same time, she developed a feverish curiosity about the medical experimentation the Nazis conducted during the Holocaust. "All my obsessions related to something profoundly catastrophic," she says. "I have a really hard time feeling emotionally aroused. Brutal, violent, scary things were interesting to me because that was the best way to feel something."

In a similar effort to manufacture emotions, Kiriana found it exciting to jog through her high school's murky backwoods at midnight in the snow wearing a T-shirt, shorts, and sockless sneakers. And her repeated readings of Bret Easton Ellis' American Psycho soon surpassed those of The Wonderful World of Prehistoric Animals. "I was partly drawn to serial killers because of my interest in patterns, logical induction, and puzzle solving," she remembers. "These twisted individuals took puzzles to a whole new level of interest." Captivated by the process of piecing together an event based on its physical trace, she fell asleep each night trying to come up with the "perfect crime," one that could not be reconstructed.

Incessant puzzling wasn't necessarily an academic boon: Practicing for the math portion of the SAT, Kiriana says, "I would ponder the logic instead of just using shortcut strategies." Though her scores were good, she didn't get into Princeton, her first-choice school. She happily went to Vassar instead.

During her first year there, she found herself part of a group of friends—a first. But stressed out by greater academic challenges and increasingly aware that she could not process lectures as well as her classmates, she sought help from a doctor, and then another. When a psychiatrist finally pulled the pieces together and diagnosed her with Asperger's, the label alone resolved a lifelong identity crisis. The diagnosis was the only one that reconciled, as she puts it, her special talent for being smart and stupid at the same time. "In this very small world of Asperger's," she says, "that's normal."

After graduation, driven partly by a desire to understand her own "neuro-atypical" mind, Kiriana set out for New York University to begin a Ph.D. program in neuroscience, where she now conducts emotion research on rats. Lacking the internal maps on which most of us depend, she often got lost in her lab, a stark maze of hallways lined with nondescript white doors. Toward the end of the school year, when no one was in sight, she stuck pieces of colored tape on the doors, visual cues to help her find her way.

Listening comprehension is still a source of strife for Kiriana. "When I watch a movie, I have to turn the volume way up to understand dialogue, but way down whenever there is background noise or music," she says. "When I go to hear a lecture on a subject, it's like I'm listening to a foreign language." But Kiriana makes efforts to work around her deficiencies. After a few mishaps, she explained to one scientist she works for that she just can't remember spoken instructions. "Now that he's aware of that, I can just run and get a pen and write it down." She tries to remind herself that as neuroscientists, her colleagues are particularly likely to understand that her brain is wired differently. Besides, she says, "It's a profession where everyone is a bit odd."

At the moment, Kiriana is combining her current fascinations for science, writing, and drawing as she translates a textbook on neurodevelopment into metaphorical scenes. One page of her sketchbook shows two rivers, labeled the "dorsal" and "ventral" streams, along which undifferentiated cells migrate to their destinations. Sharks in the water represent inhibitors to cell development. The project is time consuming, but it's the best way she's found for mastering complex ideas.

Kiriana's never taken an art class, though her drawings are sophisticated and beautiful. Her spatial orientation problems don't extend to her ability to imagine objects and render them on the page. "To me, art is a part of science, of observation—it's finding the details that define an object."

Last summer, Kiriana went several weeks without speaking to anyone she knew. "I feel most comfortable being alone," she says. "I don't feel lonely very often, and when I do, it's usually not a general feeling of loneliness as much as a wish to be with a certain person or people." Parties tire her, and when she meets someone new she fears she'll come off as boring. "The things most people think of as fun are work to me," she says, citing the complicated dynamics of relationships and social interaction. "To me, fun would be reading a textbook."

Friendships do bring her pleasure, though. When she was 18, she met the closest friend she's ever had, a gay man. "He was the only person I ever felt really connected to, where I didn't mind if he hugged me." When a friend is upset, she can give advice if she can relate to the dilemma. But when it comes to being there for someone who is crying, Kiriana writhes under the pressure to respond the way a "normal" person would. "Anything schmaltzy makes me squeamish," she says. "My parents try to be affectionate, and they get hurt feelings sometimes because I don't like to hug them."

Kiriana gets rushes of happiness, pride, and guilt, but abstract concepts—patriotism, for example, or spirituality—don't rouse her. "I do cry," she says, "but it's usually out of anger or frustration. Rarely do I feel true sadness." She did feel terribly sad this year over the death of Slinky, her cat.

Kiriana is attracted to men and sometimes longs to be in a relationship, yet it's hard for her to have any idea whether men she meets—such as the ones who, captivated by her looks, linger by her table at the cafe where she studies—are being flirtatious or merely polite. And maintaining eye contact is always a challenge. "There are so many situations where I'm talking to somebody and I can tell they've lost interest," she says. "A lot of times I'm not sure what I did." If she is really taken with someone, she often becomes so flustered that she drops something or starts choking—an adorable quirk, but one that leaves her even more ill at ease.

One remark that Kiriana has heard repeatedly is, you must have been a nerd growing up. "I wish I'd been a dork or a nerd, because those are things that people recognize," she says. "I was a different species." It's a perspective that may account for her fierce identification with animals. "If I saw a person lying on the street, my first response would be, I wonder what's wrong with them, I should call 911. It's not emotional, it's practical," she says. "If I saw a dog lying on the street, I would be on my knees, in pain."

Psychologist Shana Nichols has noticed that nearly all the girls with AS that she sees are avid animal lovers. "Animals don't care if you can't have small talk about the weather," she says. "There's just not as much anxiety as there is with human interactions, so you can really connect."

Kiriana behaves loyally toward her family and friends, but she balks at saying she loves anyone. "While there are many people who certainly matter to me, I'm not sure I can qualitatively summarize whether or not that constitutes love," she says. She doubts she could ever fall in love.

For as long as she can remember, she's had a need for rational understanding, to take things apart to know how they're put together. That kind of thinking has helped her become an ace science student, a precise artist, a forceful writer—all in spite of, or maybe because of, her Asperger's traits. The paradoxes of her personality—those exceptional bursts of creativity and disability, a desire for closeness that competes with her contented solitude—will keep generating tough puzzles for Kiriana to work on, even if the actual solutions are more elusive.

"I spend a lot of time watching the rats in the lab," she says. "Sometimes when I watch them, I feel jealous. The way they interact is so connected. And when they play, I often wish that I could join their party."

For God has not given us a spirit of fear, but of power and of love and of a sound mind.
2 Timothy 1:7

excerpt from "Literal Land"

2007-02-16T00:06:00.000-06:00

Last night, Emma Jean was ready to crash before 7pm bedtime. I went into her room to tuck her in and I asked her, "Oh baby, are you just pooped out?"

She replied, "Well, I actually pooped out a little bit, but no diarrhea or anything."

You'd think by now I would know to choose my words more carefully.

"God has brought me laughter, and everyone who hears about this will laugh with me."
Genesis 21:6

1 in 150

2007-02-08T22:05:00.000-06:00

WASHINGTON, DC (February 8, 2007) -- This morning, the Centers for Disease Control and Prevention (CDC) released, through its Morbidity and Mortality Weekly Report (MMWR), the latest revised prevalence figures for autism. The report indicates that the prevalence of autism is now 1 in 150, up from the 1 in 166 figure reported by the CDC in January, 2004.

Today's report states, "Findings from this first U.S. multi-site collaborative study to monitor ASD prevalence demonstrated consistency across the majority of sites, with prevalence statistically significantly (p<0.001) higher in New Jersey. Average ASD prevalence across all six sites was 6.7 per 1,000 children aged 8 years. These results indicate that ASDs are more common than was believed previously."

Speaking at a Capitol Hill briefing about the new data, Dr. Gary Goldstein, Autism Speaks' Scientific Advisory Committee Chair and President of the Kennedy Krieger Institute said, "These new numbers provide a much more accurate picture of a disorder that has undoubtedly become a major national health crisis. Our dedication to finding critical answers about autism -- potential causes, better treatments and, hopefully, a cure -- must become that much more urgent today."

These new prevalence estimates are the first to come from multiple sites utilizing the same methodology for the same points in time. (Previous prevalence estimates have been from single sites and have relied on differing methodologies) . According to the CDC, these data represent the most comprehensive effort to obtain accurate prevalence figures for Autism Spectrum Disorders to date, and offer important information about the prevalence of these conditions in multiple parts of the U.S.

As part of this study, six ADDM sites evaluated the prevalence of ASDs for children who were eight years old in 2000 (born in 1992): Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia.

An additional eight sites determined ASD prevalence for children who were eight in 2002 (born in 1994): Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah and Wisconsin.
What does this new number mean? If your life has not been touched by autism yet, it will be. Either in your own family, or your neighbor's, your children's classmates, your coworker's, someone that you know will have autism.

If children were going blind at this rate you can believe the government would have done something by now. Let's pray that the Combating Autism Act is just the first step.

Periodically, people praise my commitment to the girls, to autism. While I appreciate their kind words, and I really do, I must say that as a parent of children on the spectrum, I am not terribly unique. I interact with so many parents of children with autism, I feel confident in saying that you will rarely meet a more dedicated group of people in your life. With little support and guidance, they devote themselves to forging a path towards knowledge and understanding despite the incredible obstacles that stand in the way of finding help for their children and their families.

The release of such staggering numbers naturally lead people to ask, "Why?" And burgeoning distrust in the medical profession (largely due to the insidious behavior of insurance and pharmaceutical companies, IMO), leads reasonable people to wonder about possible misdiagnoses of the disorder. To that I respond:

The way autism is diagnosed has not changed in decades. "Better diagnostics" does not account for the increase in diagnoses. More autism is being diagnosed because there is more autism. Period.

Because the red flags for autism are more thoroughly understood now, children are being identified as at risk for autism or as autistic younger everyday. I wish Abby and Emma Jean had been "labeled" at fourteen months. If we had started interventions then, who knows what heartache we could have avoided, not to mention what their prognosis could have been now.

FYI, in families where a sibling has already been diagnosed with autism, children as young as a year are being flagged.

"But labels are potentially damaging to children. They internalize the label. Doesn't that indicate we should reserve labeling until a diagnosis of autism is clear?"

Ahh labels. Personally, I believe they only have as much stigma as people allow them to have. I don't worry over labels, nor do I go out of my way to keep the girls' autism under wraps. To me, doing so would only permit people to remain ignorant of the many faces that autism wears. When people say to me, "Well your girls don't look autistic!" That just proves their ignorance on the subject. I don't mean that in a critical way, it just demonstrates how limiting labels are when they are only applied to the most severe cases.

"But is autism a real disease? Why is it called a disorder? It must be psychological."

Autism is considered a disorder.

Disorder ~ A disease is any abnormal condition of the body or mind that causes discomfort, dysfunction, or distress to the person affected or those in contact with the person. Sometimes the term is used broadly to include injuries, disabilities, syndromes, symptoms, deviant behaviors, and atypical variations of structure and function, while in other contexts these may be considered distinguishable categories.

Disease ~ An abnormal condition in which its physiology, morphology, and/or development is altered under the continuous influence of a pathogen.

In other words, within a disease there is illness, while within a disorder there is a disruption. Does that make sense?

There is strong evidence of a genetic component to autism, in MOST cases.

There are cases of environmental "autism." Autism looks a lot like mercury poisoning. That said, there have been great strides in isolating the genes that may be the genetic markers for autism.

One reason I believe there is a greater incidence of autism diagnosed now is that formerly, many autistics would have been diagnosed as MR. Many still are, because MR is diagnosed via cognitive testing and most of those tests rely on measures of verbal communication performance. Many autistics never learn to communicate verbally, or through sign, but when facilitated communication is applied, they end up being recognized as having average, if not above average IQ's. The woman profiled in "Autism is a World," is a perfect example of this.

"Children deserve the chance to develop before being saddled with some label. If the intervention used to correct autism's harm are the same, with or without a label, then why risk it?"

Well...first of all, why was a child who was labeled autistic suddenly freed from the label? Because they no longer meet the educational criteria? Frankly, from a school's point of view neither of my girls need speech therapy. That is because by their criteria, my girls are capable of articulation and on the surface, understanding verbal communication. But, they struggle tremendously with the give and take and nonverbal understanding of communication that most people take for granted as being understood, especially with children who look so"normal" and seem to possess so much knowledge and comprehension. They still need speech therapy. Not like a child who cannot speak at all or struggles with articulation, but they still need it. Will schools provide it for them without a dx? No.

Socially, schools base needs on a baseline that centers around independence. Are my girls potty trained? Yes. Can they get dressed on their own? Yes. Can they ask for help? Yes. To the latter I can only respond, "But will they?" Do my girls understand the give and take of the play ground? Not without help. Do they "get it" when they have annoyed someone with random, one-sided conversation about their favorite color, number, or wheelchairs? No. They need social skills help. Unlike typical children who learn from unsuccessful interactions with their peers, mine don't, not without direct and repeated intervention and instruction. Does this matter? Hell yeah! Have you ever encountered adults who don't know when to let something go? Who seemingly randomly volunteer too much information? Who bore you to tears on a subject you could care less about? These are ongoing, real life issues that people with autism struggle with and because sometimes their disabilities are "hidden" and they appear functional, they do not get the help they need to truly operate in society as successfully as they might if only they had some help. Unfortunately, without a diagnoses, that help is out of reach.

As long as the understanding of what autism is and what it is not, is limited to "Rain Man," it is unlikely that any potential deficits will be addressed. The most crippling aspect that our most "high functioning" kiddos face is not what others think of them, but rather what they think of themselves. Without an understanding and support for why they are the way they are, how can they possibly make the most of who they are?

Recently, how autism is diagnosed on a scale was explained to me like this: Based on the CARS, a child who is not autistic would score a one or a two. A child who scores a 19 or a 29 (the cut off on the CARS is 30, I believe) is still autistic. They just don't meet the criteria of the CARS.

Most schools use a child's CARS score to determine whether or not the child qualifies for autism services.

I want my girls to know that they have problems understanding the world around them and even more importantly, that the world around them may have problems understanding them. Without being able to name that, how else can they expect to distinguish themselves from some regular Joe who is just lazy about listening and sloppy in their interpersonal relationships?

Do you think, given someone with autism's deep and ongoing lack of understanding of how "typical" communication works, that without a diagnoses they are somehow aided or propelled to success?

No, when the autistic label is brushed aside or removed or denied, then their ability to differentiate between personal failure versus an organic deficit is removed. How does that help anyone? If as an employer you knew that the person you hired struggles with interpersonal relationships in the office, but you knew that the skills were present to enhance your business immensely, would you be more or less motivated to help them where they are weak so that they could ultimately make your business stronger? For the autistic person, when the label is removed because they are "high functioning" does that eliminate their interpersonal weaknesses or their technical ability? No, but it will cripple their ability to contribute, primarily because they will judge their abilities by their success, without regard to their organic weaknesses in the areas of nonverbal and social communication.

1:150.

The only credibility that autism has lost with the surge of its diagnoses is its status of a rare disorder. The question is no longer if autism will touch your life somehow, but rather when.

Hear this, you elders;
listen, all who live in the land.
Has anything like this ever happened in your days
or in the days of your forefathers?

Tell it to your children,
and let your children tell it to their children,
and their children to the next generation.
Joel 1:2-3

Open letter to Ernie Brown (area talk radio show host)

2007-01-23T19:10:00.000-06:00

The following letter is in response to THIS news report and his subsequent ranting and unsympathetic criticism.

I do not think the airline over compensated the family of the child booted from the flight. We may not be in possession of all the facts in this story.

I am mother to twin autistic girls. They are six now and after intensive intervention therapies for three years, they might be able to fly, but at three they would have behaved the same way the child reported on in this story was described as behaving. There was nothing we could have done about their behavior. We weren't bad parents. In fact, we were and are incredibly dedicated parents who would have been bewildered, embarrassed and frustrated by the situation too. And it would have been an all too familiar scene. When facing new situations with unfamiliar people, smells, sights, and surroundings, they often flew into tremendous tantrums. I endured heaps of unfair criticism and judgement from complete strangers who felt free to offer such helpful advice as,

"Those children need a spanking!"

You can't spank autism out of child.

Or "If those were my children, they wouldn't be getting away with such behavior!"

Really? Then I know about 25 families who will be glad to bring their children to you so that you can straighten them out.

These are just a couple of examples. It goes without saying there have been many rolled eyes, overt stares, and dirty looks. Do you suppose a wheelchair bound or Down's child or their parents would be so freely criticized? As a parent of children with hidden disabilities, you have to develop a thick skin.

Aside from reporting the story, you railed about "screaming and crying" children in restaurants. Restaurants are another place that children with autism and other developmental delays struggle. So are grocery stores, pharmacies, parks and virtually anyplace that entails waiting or circumstances outside of their normal routine.

We don't know if the child in this story has autism or some other pervasive developmental delay. The child's parents may not even know. Autism is usually not diagnosed until the age of three.

If you want to see what autism is all about, watch THIS short video called Autism Everyday. Perhaps it will give you a different perspective the next time you encounter a family out in public with a seemingly ill behaved and out of control child.

Sincerely,

Susan S.

The fern and the bamboo

2007-01-17T11:30:00.000-06:00

One day I decided to quit…

I quit my job, my relationship, my spirituality…

I wanted to quit my life.

I went to the woods to have one last talk with God.

“God,” I said. “Can you give me one good reason not to quit?”

His answer surprised me.

“Look around,” He said. “Do you see the fern and the bamboo?”

“Yes,” I replied.

“When I planted the fern and the bamboo seeds, I took very good care of them. I gave them light. I gave them water. The fern quickly grew from the earth. Its brilliant green covered the floor. Yet nothing came from the bamboo seed.

But I did not quit on the bamboo. In the second year the Fern grew more vibrant and plentiful.

And again, nothing came from the bamboo seed. But I did not quit on the bamboo. He said.

“In year three there was still nothing from the bamboo seed. But I would not quit.

In year four, again, there was nothing from the bamboo seed.

I would not quit.” He said.

“Then in the fifth year a tiny sprout emerged from the earth.

Compared to the fern it was seemingly small and insignificant…But just 6 months later the bamboo rose to over 100 feet tall.

It had spent the five years growing roots. Those roots made it strong and gave it what it needed to survive.

I would not give any of my creations a challenge it could not handle.”

He said to me. “Did you know, my child, that all this time you have been struggling, you have actually been growing roots?”

“I would not quit on the bamboo. I will never quit on you.”

“Don’t compare yourself to others.” He said. “The bamboo had a different purpose than the fern. Yet they both make the forest beautiful.”

“Your time will come”, God said to me. “You will rise high”

“How high should I rise?” I asked.

“How high will the bamboo rise?” He asked in return.

“As high as it can?” I questioned.

“Yes.” He said, “Give me glory by rising as high as you can.”

I left the forest and bring back this story.

I hope these words can help you see that God will never give up on you.

Never regret a day in your life.

Good days give you happiness; bad days give you experiences; both are essential to life.

O LORD God Almighty, who is like you?
You are mighty, O LORD, and your faithfulness surrounds you.
Psalm 89:8

warning! shameless parental bragging ahead...

2007-01-04T10:45:00.000-06:00

You can't say you weren't warned.

Over Christmas and for the next couple of weeks, I am temporarily cooking for an elderly client that another chef friend of ours usually cooks for. He is away with the rest of her more able bodied family until the middle of January. Anyway, she is quite old and has had a stroke and has a swallowing disorder. She lives in an assisted living community (the fanciest one I have ever laid eyes on, BTW) with two nurses and a personal assistant. I deliver meals for all of them every other day. Obviously, this means that the girls are often with me when I make the deliveries.

The architecture of the building is Italian Mediterranean. It has a cobblestone and brick circular drive area for temporary parking. The first time I brought the girls with me, when we got out of the van, Abby looked down at the drive and said, "This is like in Rome." I had not paid any particular attention to the drive before that, but when I looked down I had to agree.

She went on, "Rome made this kind of streets so the rain would not wash them away. They were the first civilization to do it. It made them great."

First off, hearing your six year old who had no significant speech until she was three say all that was stunning and secondly, since she has a pronounced lisp, hearing her say the word "civilization" was about the cutest thing ever.

Then we entered the building. We had gone over numerous times what I expected of them behaviorally while we were there. I signed in at the concierge desk (where both girls greeted the attendant with, "Bon Jour!") and we began walking towards this woman's suite.

Along the way, Emma Jean pointed out a framed, architectural drawing/watercolor and accurately identified it as the Pantheon. Then we came to another similar work so I pointed to it and asked them if they knew what the drawing was of and Abby answered, "An archway." Which made me laugh because my little Literal Lucy was identifying exactly what I was pointing to, but I was referring to the subject as a whole. After we cleared that up, they both accurately identified the structure as The Coliseum and then went on to tell me about the gladiators and the Christians that fought there.

I was stunned and delighted beyond measure.

Can you believe it?

Dr. Monteiro, the DISD autism "expert," can stick her prognosis of "life skills at best" in her aquaduct and sit on it.

Joshua told the people, "Consecrate yourselves, for tomorrow the LORD will do amazing things among you."

Joshua 3:5

open letter to our teachers

2006-12-25T20:11:00.000-06:00

Merry, Merry Christmas our precious teachers!

I wanted to take a moment to thank you for being such awesome and invaluable influences on my family's lives.

I don't know how involved you are in the decision making process of students being accepted to Covenant, so I don't know if you ever saw our letters of application or whether you know anything of the anxiety with which Jimmy and I approached Covenant with the girls' applications. We struggled mightily for a year about whether or not to reveal their unique needs and backgrounds. Upon acceptance, we were both thrilled and amazed, but most of all humbled by God's incredible sovereignty and mercy.

The work began in earnest to ready them for what the school year would bring, primarily socially, and at summer's start, I was genuinely terrified. Camps, social skills classes, and supervised, intentional play-dates...none boded well.

Then on the precipice of school's beginning, we met their teachers. Again, we were amazed and humbled by God's sovereignty and mercy.

Each of you were hand picked by Him for our girls. We have been immeasurably blessed by y'all's steady and dedicated influence over Abby and Emma Jean this first semester. Thank you so much. Thank you.

Our family's prognosis was so grim on 12.8.2003. With help, it became increasingly brighter. And under your guidance, we are beginning to believe that it is truly unlimited.

Over the break, we have been blown away by their absorption of what y'all have imparted to them this first semester: Scripture, history, architecture, art appreciation, patience...I could go on and on. You have exceeded every expectation for excellence that we could have dreamed up. Thank you. We are blessed beyond reason by your gifts.We wish you and yours the very best Christmas and New Year's holidays. God bless you.

In HIM with thanks and love,

Jimmy and Susan

O people of Zion, who live in Jerusalem, you will weep no more. How gracious he will be when you cry for help! As soon as he hears, he will answer you. Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it."

Isaiah 30:19-21

miracle on church street

2006-12-24T22:01:00.000-06:00

Our church did not offer childcare tonight for children over the age of four. Jimmy and I were both concerned that the girls would not be able to tolerate the adult service: loud music, lights, sitting still...

Prayerfully, we chose not to say anything to the girls before today. When we did, we spoke to the girls about what the deal was and what to expect. We assured them that WE were confident that they could do it, but that if we decided it was too uncomfortable, then we would depart and that noone would be in trouble. Not with mommy and daddy and certainly not with God.

Emma Jean was plainly very anxious. Then in a stroke of luck (if you believe in such a thing), we saw her teacher's family and for some reason that relaxed her a bit. Abby was fidgety, but not to the point of distraction.

WE DID IT! The family shue sat all together for a very special Christmas worship service. We sang songs, prayed, took communion, and listened to the lesson (click HERE to see the unbelievably timely reference our pastor used tonight) without incident. Jimmy and I were so proud. Needless to say all my carefully applied eye makeup was gone by the service's end.

I already got the best Christmas present ever....peace in His presence as a family. Praise God!
__________________

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Romans 15:13

Dr. Temple Grandin on Google Video

2006-12-21T05:49:00.000-06:00

I am a big fan of Dr. Grandin. I first read of her in Dr. Sacks' book (of whom I am also a big fan) and have since heard her speak a few times and I have read everything she has written. She is a remarkable voice in this world.

Video documentary of woman who thinks like a cow
Animal science expert and author Temple Grandin is autistic, and she says she can understand animals because of this. Google Video has her full length documentary.

Her story first became known as she was included as a case study in neurologist Oliver Sacks' book An Anthropologist on Mars.

Interestingly, Grandin suggests that her autism helps her understand animals, as she suggests they have similar styles of thinking in some instances.

In the programme, Grandin explains her work and views on autism. Furthermore, the documentary highlights her as a bright and engaging person, far from the usual stereotypes of autistic people.

Click HERE.

Wherever you go, HE is there

2006-11-02T19:04:00.000-06:00

Abby has a tremendous fear of bathrooms. Public restrooms are the worst. They are a minefield of loud, impossible to predict noises and smells. The air hand dryers, the fans, and don't even get me started about automated toilets.

Anyway, she had been fine at school until the bathrooms by her classroom quit working. Because of the massive remodeling that is going on at her campus, they may not repair them since there are several other restrooms in the proximity. Abby has been having a really difficult time for the last two weeks. It has been a nightmare to be honest and I had exhausted my bag of tricks as of this morning. I was thinking I was going to have to bring in one of her former ABA therapists to come assess the situation. I was so frustrated I started crying after having spent an hour with her at school today investigating all the bathrooms to no avail. She was obviously terrified and it was breaking my heart. I could not believe that of all the possible major problems she could have with school this year, it was going to be those dang bathrooms that did her in.

Well, her teacher just called to report that she did it! She went and was very brave and did a great job.I sent Abby to school today wearing some dogtags of her dad's that have a shield with Joshua 1:9 written on it. She knows the verse by heart, but in an inspired moment this morning I got the encklace out and put it on her to wear to school. Her teacher said that after Abby used the bathroom she was so excited and proud of herself that she went and told her sister, who in turn gave her a big hug and jumped up and down. She told her teacher, "I HAVE to wear this necklace everyday I come to school from now on!"

To that I say, "You bet sugar-pie!!!"

Oh, I am so happy right now. An answered prayer! This was truely an act of God. I had just hung up with Jimmy telling him the bad news about this morning and lamenting the whole situation when the phone rang and I saw the school on the caller ID. I already had my keys in my hand, literally! Boy was I thrilled to hear the great news I received instead!!

I called Jimmy immediately following my conversation with Abby's teacher and after he expressed his joy over this turn of events he confessed that he thought I was calling him to tell him to go get her. What a pair of doubting Thomas' we are!

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."
Joshua 1:9

Combating Autism Act blocked by a single Congressman

2006-11-02T11:17:00.000-06:00

I don't know if you have read about what is going on with the Combating Autism Act in Washington, but we were on the precipice of getting something done for the Autism Spectrum Disorder community when a Texas Congressman who values big pharmacy bucks over his local constituents' voices ground the legislative wheels to a halt. Please take a look at THIS blog to get an overview and to see some of the faces of autism whose voices are being silenced by Joe Barton. There are several links within the blog to editorials and other news coverage, as well as some moving letters from parents and grandparents in the comments sections.

Thanks for your consideration. Whether or not this gets passed will affect funding for autism programs and research nationwide. I hope you will reach out to your Representatives if you find this legislation compelling.

sign language

2006-10-31T19:19:00.000-06:00

Emma Jean has long fancied herself quite the linguist. We joke that English is like a second language to her (she has major semantic-pragmatic issues ~ we call it shue-bonics, shue is part of our surname). She also imagines herself to be fluent in Spanish and French. She has recently taken to American Sign Language, although it is really more of a gesticulating shue-bonics. Anyway, she regularly approaches me with these elaborate hand jives that she then interprets for me.

At dinner recently she broke into one such signing extravaganza and then informed Abby, "This means 'pass the salt.'"

After a pregnant pause, a totally deadpan Abby did a simple gesture and replied, "This means, 'No.'

Abby's comic timing was perfect. You could have knocked Emma Jean over with a feather.

Total spent on interventions so far: $155,000

Dinner conversation at the house of shue: PRICELESS, in any language.

"When the LORD brought back the captives to Zion,
we were like men who dreamed.
Our mouths were filled with laughter,
our tongues with songs of joy.
Then it was said among the nations,

"The LORD has done great things for them."

The LORD has done great things for us,
and we are filled with joy."
Psalm 126:1-3

"We'll always have Oak Cliff...."

2006-09-28T20:25:00.000-05:00

Since we moved here, almost six years ago, I have enjoyed relative anonymity. I never held a job here and then the girls' challenges led to further isolation. For the most part, this suited me.

After we began our journey on the spectrum, I was out and about much more and naturally, I met people. However, unlike that which is the habit of other social contacts, we generally only ran into one another in waiting rooms, at social skills classes, or in the vitamin aisle at Whole Foods. I still moved about the city with relative anonymity. I liked this; it worked for me.

Now that the girls are in school and activities, in other words, now that we walk among the vanilla people, I am finding my quiet, unassociated life slipping away from me. On Monday I helped out a friend with her daughter so I took my girls and her to Chik Filet to eat and play. I immediately ran into a group of ladies with their children from church. After we got our food and the girls alighted for the playground, I ran into several mothers from their school. It was unnerving to me to encounter two groups of people that knew me and my children. After the restaurant, I took the girls to Abby's make up ballet class and low and behold, there were two more families from the girls' school and another lady from our church.

After all that unexpected socializing I was exhausted. It was nice on one hand, but tiring and I was very selfconcious all day. When I told Jimmy about my day he said, "At least you'll always have Oak Cliff."

It may not be Paris but its all I've got.

My covert operative status is slipping away.
God grant me the serenity to accept this change in my social scheme.
__________________

“Let the hearts of those who seek the Lord rejoice.
Look to the Lord and his strength; seek his face always.”
1 Chron. 16:10-11

thank goodness for the good ones

2006-09-26T22:36:00.000-05:00

The good doctor that is. We have some issues with Beans and have decided to persue some professional help. She is just aggressive and completely without remorse. She is unable (or unwilling) to take responsibility for her actions. I do not think she does what she does out of malice. I am certain it is a manifestation of her inability to take anyone else's perspective combined with the impulsive nature of ADHD, but I am at my wit's ends as far as how to address the problem. I want to help her before she acts out like this in an enviorment where the consequences will not be in mommy and daddy's hands. So far she has restricted her aggression to Abby and one time she got after one of her ABA therapists. Today's outburst could have had SERIOUS consequences. It scared me.
I made an appointment with a parent recommended doctor today, but decided on a whim to contact the doctor who dx'd the girls. She is outstanding. Amazingly, she wrote me back right away with some questions and she catagorically recommended one therapist for the task. There are a gagillion therapists in the area and as ya'll know or could imagine, it is SO scary to entrust your child's emotional well-being and development in the hands of just anyone. I am beyond thankful for her recommendation. Her opinion bears much weight with us. What an answered prayer!
We are blessed to have a relationship with this doctor. Most professionals in her position would not return a two and three year past client's email at all, much less within minutes of the inquiry.
PTL for Dr. M.!!

“Most assuredly, I say to you, he who believes in Me, the works that I do he will do also; and greater works than these he will do, because I go to My Father. And whatever you ask in My name, that I will do, that the Father may be glorified in the Son. If you ask anything in My name, I will do it.”
John 14:12-14

Lights! Camera! Action! AUTISM

2006-08-18T14:43:00.000-05:00

Film camp gives children with autism chance to shine
'Epidemic' sees programs popping up across the nation
By Lori Higgins
Special to the State Journal

Jake Skelly is a natural ham. Ask him what he likes best about film camp, and he'll tell you it's the moment before classes begin, when each student has a moment in the spotlight.

"I have a cool move. See, look," Jake said, demonstrating the "Macarena" groove he performed earlier in the day to "September" by Earth, Wind & Fire.

Seeing Jake so happy is gratifying for his mother, Wendy O'Connell, who hoped for years for programs like the film camp, geared toward children like Jake.

Jake, 9, is among a growing number of kids with an autism spectrum disorder -- Jake has Asperger's - which affects function of the brain, social interaction and communication skills.

"I can't sign him up to any other camp. They're not equipped to handle him," said O'Connell of Sterling Heights.

In Michigan, the number of children identified with autism has grown from 304 in 1982 to 10,133 in 2005.

Nationally, the Centers for Disease Control and Prevention has reported that between 1 in 166 and 1 in 500 children have an autism spectrum disorder.

Though some of the increase is attributed to better identification of children with autism, doctors can't pinpoint a cause or explain why it is affecting so many kids.

This week's camp at Oakland University is one of many programs throughout the region that are popping up in the wake of the explosive growth.

The increase is significant enough that in the last six years, Michigan has gone from a state where only one university offered a program for teachers to be endorsed in autistic impairment to one where six schools offer such programs.

And the growth has spawned more services and support for parents of children with autism.

Five years ago, when Jake was first diagnosed, O'Connell was lost.

"There was nothing. I prayed a lot for something like this," she said of Jack's Place for Autism at OU, which provides resources and recreational activities for children with autism.

Joey Travolta, whose Joey Travolta's Entertainment Experience offers the film camp through Jack's Place, called the increase in autism an epidemic.

Travolta, the brother of actor John Travolta, was inspired by two mothers whose children have autism.

"There were no programs for their children. They would either be kicked out or not accepted," said Travolta, is director of the camp and a former special education teacher who became an actor, musician and director.

The camp, which began Aug. 7 and continues through this week, has about 30 children with an autism spectrum disorder and about 15 siblings or friends who do not have autism.

He has done two such camps this summer in other parts of the country and will do another at the University of California Los Angeles next week.

Contact Lori Higgins of the Detroit Free Press at (248) 351-3694 or lhiggins@freepress.com
Copyright 2006 Lansing State Journal

source

This kind of thing has Emma Jean's name written all over it! I am going to contact this man and see if hes thought about DFW!!!

Grace be with all those who love our Lord Jesus Christ in sincerity. Amen.
Ephesians 6:24

Protest Prenatal Autism Testing

2006-07-09T23:58:00.000-05:00

Click HERE for further explanation.

First they came for the Jews
and I did not speak out
because I was not a Jew.
Then they came for the Communists
and I did not speak out
because I was not a Communist.
Then they came for the trade unionists
and I did not speak out
because I was not a trade unionist.
Then they came for me
and there was no one left
to speak out for me.

~Pastor Martin Niemöller

Open letter to people freaking out about prenatal testing results...

2006-07-08T02:14:00.000-05:00

and the people who rush in to assuage and console their fears...

Your fretting diminishes from the respectability and value of every person on this planet who is somehow disabled or differently-abled.
With that information, does all your worrying seem so innocuous, nay righteous now? Should your child be born with a genetic abnormality, but intellectually capable of uncovering your prenatal shrieking, would you be pleased about your relentless carrying on about how horrified you were when faced with the prospect of their birth? Termination on the grounds of "possible" outcomes is repulsive.
With every fear-driven, ignorant trill, you whittle away at the most intrinsic rights of those who have little to no voice, but are human beings nonetheless. Human beings who, no matter their degree of incapacity, should be treated with respect and accorded basic human dignity.

it's the little things.....

2006-06-24T19:51:00.000-05:00

This morning I was talking to Jimmy and out of the blue he told me how much he loved me, praised my wifey-ness, and said he was so happy that I was his for all time.
It was so unexpected and sponteneous. He shared with me something he had never told me before. Some of ya'll maybe familiar with our romance, but for those who aren't...
Jimmy and I dated for six months when we were 20 and 21. One day, he suddenly dumped me to get married! It was such an awful time for me. Talk about taking the wind out of the sails....
Anyway, he married and within two years I married too. The restaurant scene in Austin is pretty small and incestuous, so I heard things about him from time to time, but I was doing my own thing and didn't give him much thought. About four years into his marriage, things between them fell apart. They divorced and he left the country.
In 1998, the chef/owner of the restaurant where we met and worked together, had plans to put a new super-chic restaurant together and called him back to be his sous chef. He also put feelers out for me. My marriage was not going too great and I thought working outside of my husband's and my business might be good for us so I decided to take the job, totally unaware that Jimmy would be a part of the new venture. What a shocker to find him in the kitchen that first day! It was awkward at first, though more for him than for me. I was glad to be working with him and the other guys again. It seemed like old times. At some point, all the kitchen workers were out together after work one night and Jimmy took me aside and finally formally apologized for his behavior years ago. I was glad. It needed to be done, for his sake more than mine by that point.
A year passed, and I decided to leave my then-husband. I told no one at work, except my chef because I needed to make some changes in my work schedule before I took any action. I left my then-husband and about four months later Jimmy asked me out. It was de ja vu all over again. We got pregnant and married in August 2000. What a whirlwind.
Anyway, the reason I shared all that actually does have a point. What he shared with me today was that back in 1998, shortly after we started working together again I ran into him and his roomate out somewhere one night. Apparently after I left he turned to his roomate and said, "Why didn't I stay with Susan? If I had married her I'd be so happy. I'd have everything I want."
He had never told me this story before and after he did today he said, "And you know what? I was right. I am so happy and I have everything I want."
Thanks for letting me share this little love interlude. I was so touched by his revelation and affection. I am telling ya'll about it for a couple of reasons. Firstly, because it was so sweet and I wanted to brag on him a little bit. And secondly, to maybe encourage someone who might have a dh or SO who is pretty reserved. Keep at your relationship, strive to do the next right thing rather than sucumbing to the temptation to go into retaliation mode. You never know what he's got cooking and when the day comes that he lets you in or lets some of that slow-cooked love out, everything else that has happened before falls away.
Stay the course. The payday is so worth it.
__________________

Submit to God and be at peace with him; in this way prosperity will come to you.
Accept instruction from his mouth and lay up his words in your heart.
If you return to the Almighty, you will be restored.
Job 22:21-23

nobody's crying....

2006-05-28T19:20:00.000-05:00

I hope that everyone I shared this video clip with will read OUR rest of the story...
I was surprised by how much that video clip bothered me. I was simultenously glad for the insight into the daily challenges that the girls and I faced for the first three - four years of their lives and repulsed by the hopelessness and "pity me" gist of it too.
I can't speak for anyone else and I certainly do not blame the girls for this, but when they were little and tag-teaming me with the endless tantruming all day and most of the night, and I was exhausted, and the a lot of people in my life were blaming me for what was going on or blowing off my tenative concerns with, "Oh, all kids do that," I would have been really thankful to know that I was not a huge f-up and that my kids were not defective and unreachable. That there was an explanation for all the screaming and self-injury and there were things I could do to make our lives more manageable. And that, in fact, all kids did not do what the girls were doing.
On the other hand, from where we are now, the hopeless, helpless, victim angle of this clip really bothers me. Until I read a post about the clip at a blog that is, for lack of a better expression, "Pro-Autism," and many of the subsequent comments, I had been unable to put my finger on just exactly what bothered me so very much. The video paints an entirely incomplete picture of autism, or life on the spectrum in our little corner of dysfunction junction anyway. Whenever the joyful, the unique, and even the mundane experiences of life on the spectrum are left out, it does a huge disservice to my children (I am trying to be careful not to generalize anyone else's experiences) and to society. It cheapens the contributions of people who are on the spectrum and it asks so little of the communities that they live in.
I made a similar comment at the aforementioned blog and afterwards I knew I had to post it, if paraphrased, here.
We've come too far and worked too hard for anything less.
__________________

Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces.
I cried out to the LORD in my suffering, and he heard me.
He set me free from all my fears.
Psalm 34:5-6

Quote for the day...

2006-05-20T19:51:00.000-05:00

"People commonly educate their children as they build their houses, according to some plan they think beautiful, without considering whether it is suited to the purposes for which they are designed."

~Lady Mary Wortley Montagu

don't fence me in

2006-05-10T21:17:00.000-05:00

It has been brought to my attention that by my speaking in terms of "recovery" and "autism," it is unacceptable for me to also embrace acceptance.

I have been puzzled by this "either/or" conundrum. Why must the two be mutually exclusive?

I don't think that they are. As a thinking person, my views on autism and what it means to me and my family are engaged in an ongoing process. An evolution of sorts, expanding on some fronts and narrowing on others.

Three years ago when autism first came crashing into my lexicon, I though in terms of "cure." Things were very difficult around here. I was scared and embarking on a journey in completely unfamiliar territory to me. My children seemed like foreign creatures. We had no relationship beyond a very rudimentay one of a mother providing the basic needs for her helpless offspring. I was at an utter loss when it came to communicating to them or understanding what they were trying to tell me. It was a terrifying era in our family, for everyone. Having no experience with anything I was dealing with on a daily basis and having had no exposure to anyone who had, I longed to take what I had and make it fit into the landscape that I was familiar with and I used the only tongue I knew when describing what we were trying to achieve.

*cure

As I was exposed to a few ideas and approaches, I added those to my vocabulary and roladex of experiences. Those first exposures were to therapists and professionals who were not parents or people living with ASD. So my earliest understandings and expressions about our day to day experiences adopted that vocabulary.

*sensory intergration
*target skills
*reinforcing
*extinguishing

We began to make progress. There began to be communication between my children and myself. I became less afraid and unsure of my abilities to love and protect and parent these girls. My base of interraction expanded futher. We added more words.

*transitioning
*indistinguishable
*typical

As we continued, I began to actually get to know these wonderful and amazing children of mine. I was almost embarrassed by how much they delighted me. Such unique little minds...I was often in awe. Learning what they really liked to do, and then going out and doing stuff. Sharing experiences as a family. And the evolution continued.

*recovery

We bandied that word about. Tried it on for size. Trotting it out and feeling brave we made our first inroads into the typical world around us. We have had some successes.

And some rebuffs.

And now we are about to really step out into the world with kindergarten and other parts unknown. My interests and need to seek knowledge and understanding is expanding again.

*accepting
*embracing
*daring
*dreaming

So, what does this mean? Have I betrayed my former self because I no longer search for a cause or a cure? By accepting the "quirks" of our family and the girls (and myself) do I no longer dare use the word recovery? Does this mean I must now embrace "autism as culture?"

I don't think so. I don't think claiming recovery is mutually exclusive from embracing differences in neurological wiring. Recovery to me is a dynamic word, implying an ongoing, hopefully progressive process that is not yet finished and never will be until we're pushing up daisies. We are all recovering in this house. What we thought we were going to have, how we thought it would be, how it was all going to work out in the end, that's gone. And we are recovering from that. We are all still works in progress. I have not perfected communicating with my girls. We still struggle and spend a part of each day frustrated and at a loss as to what to do next. We are recovering from the imprint that fear made on our hearts and minds. We are recovering from being narrow and stiff-necked about what recovery means to us. Everyday I find myself more pliant and supple within our circumstances. My mental muscles are less taut and that enables me to stretch and reach and discover new strength that I didn't know I had or even needed.

I have no intention of creating a manifesto or mission statement defining in black and white terms my relationship to autism. I don't want to be bound by one perspective. I intend to keep on moving. I will not return to a static and limited vocabulary and repetroire of experience just because it is comfortable and familiar. People have been trying to put me in a tidy little box and define who I am my whole life and I just can't live like that. It is suffocating and I refuse to do that to my girls. They've just gotten their wings. I am not going to clip them now. That would be cruel and that would be hypocritical. That would be regression. And regression is one term I will refuse to consider.

I am absolute about that.

When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.
1 Corinthians 13:11

Forget the former things; do not dwell on the past.
See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.
Isaiah 43:18-19

What is Tom saying to Maureen?

2006-05-09T07:50:00.000-05:00

Ian Hacking, who holds a chair in the philosophy and history of scientific concepts at the Collège de France in Paris, has written an excellent review for the London Review of Books of two new books:
The Science and Fiction of Autism, by Laura Schreibman and
Send in the Idiots: How We Grew to Understand the World, by Kamran Nazeer.
This is much more than a book review. I hope that you will take a moment to read this piece. It is a worthy read in itself.

The end of a matter is better than its beginning, and patience is better than pride.
Ecclesiastes 7:8

garden: a thing of beauty and a joy forever

2006-05-08T12:13:00.000-05:00

Encouragement for all of my fellow tenders of orchids:

WAITING FOR THE ORCHID TO BLOOM

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
Galatians 6:9

Quote:
A FEW YEARS AGO, I ATTENDED A CONFERENCE in which the speaker painted a beautiful picture with her words. She told of planting a wild strawberry plant in her garden one year and of the wonderful strawberries she was able to harvest and enjoy with very little effort. Not knowing much about strawberries, she was surprised to see that her plant not only survived the winter but thrived and began to spread. In the years that followed it grew with very little care and continued to spread until finally it had overtaken her whole garden.

She then told of her orchid plant. This fragile and delicate life needed much more care than the strawberry plant. It required the right amount of light and water; the perfect temperature and humidity levels. The food had to be just so. The stock needed to be propped up as it grew. The orchid plant needed to be constantly checked to be sure that its growing conditions did not need to be adjusted this way or that. Unlike the strawberry plant that flourished on its own, the orchid needed constant attention to encourage growth. In the end, however, her orchid bloomed, rewarding her commitment with a rich, colorful bud unlike any other she had seen—one that she was indeed very proud of.

The strawberry plant is like the typical child—growing, thriving, and blooming on her own. The orchid is the child who, like our son, has autism. Nothing is simple, nothing is taken for granted. Without the right conditions of diet, intensive therapy, constant care and nurturing, these children would not thrive. They would not learn. They would remain locked in a dark, lonely, and confusing world known as autism. They would, indeed, wither and eventually die without having bloomed.

But my husband and I, like so many other parents we have come to know, are becoming experts in raising the orchid God has given us, and we are being rewarded for our efforts. Every new skill is truly precious. He says a few words, he gives a hug, he looks in our eyes, he knows his name. These are indeed small and expected accomplishments for most children. But to a child with autism, these are major milestones. They represent the promise of an orchid bud that is emerging from the dark and is beginning to bloom.

The commitment of time and resources can be overwhelming. The change in lifestyle is radical. But a child who once had no hope that now shows the promise of a fulfilling future is truly priceless. Children with autism do have a hope and a future. They have God-given potential and destinies to fulfill. Though we as their parents may have to work harder to help them each and every step of the way, in the end we will truly have children of which we can be profoundly proud.

Nevertheless, waiting on God’s timing is not always an easy thing to do. Especially in our society inundated with cell phones, microwaves, email, instant this, and instant that. We are conditioned to seeing things happen now. It is so easy to look at the immediate circumstances of our situation and say that we cannot see God at work because the circumstances seem so insurmountable and overwhelming, and often times, nothing seems to be happening. But to those who are in covenant with God through Jesus, and who are living with Him as their Lord, they can be assured that God is very much at work in their circumstances to fulfill His promise of Romans 8:28: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” God is busily preparing for the orchid of our lives to bloom, and it will do so in His time.

There are certain things as we go through the waiting process that we need to be aware of. Patience itself can produce certain other worthwhile benefits in our lives. Here are some biblical byproducts of waiting on God:

1. PATIENCE IS LINKED WITH WISDOM.
“A man's wisdom gives him patience; it is to his glory to overlook an offense” (Proverbs 19:11). People of wisdom are people of patience. Another Proverb says, “A patient man has great understanding, but a quick-tempered man displays folly” (Proverbs 14:29). The more patience we allow the Holy Spirit to work in us, the more wisdom we will have for living our lives.

2. PATIENCE HELPS US PERSUADE THOSE IN AUTHORITY.“Through patience a ruler can be persuaded” (Proverbs 25:15). It isn’t the fast-talking, high-gloss presentations that will ultimately persuade the ones who are in authority over us. Those who display patience that not only know how to wait for the right timing, but they also leaves a lasting impression of good character and dependability—a very persuasive combination.

3. PATIENCE IS NECESSARY TO POSSESS INHERITANCE.
“We do not want you to become lazy, but to imitate those who through faith and patience inherit what has been promised” (Hebrews 6:12). Just as it is with any inheritance, there is a time to possess it. If we were to try to possess an inheritance that has been promised to us in a family situation before the right time, we stand the risk of becoming disinherited. God has given us promises for our future, but if we do not wait on His timing, we could lose the fruit of those promises. Another passage in Hebrews puts it like this, “You need to persevere so that when you have done the will of God, you will receive what he has promised” (Heb 10:36).

4. PATIENCE IS A COMPONENT OF LOVE.
“Love is patient, love is kind” (1 Corinthians 13:4). This is a lesson that we, as parents of special needs children, know better than anyone. Most of us seem to have a supernatural level of patience with our children. With all that is demanded of us, however, it can be easy to lose sight of the fact that we need great patience in the other important relationships of our lives as well, including our spouse, extended family, and good friends. It’s important to remember that these are the ones with whom God has connected us, and the ones who will be committed to helping us through in the long run.

5. PATIENCE PRODUCES ENDURANCE.
“being strengthened with all power according to his glorious might so that you may have great endurance and patience” (Colossians 1:11). No marathon runner began by running marathons. It took the patience of training to gain the necessary endurance to run the race. It is no different with us. As we allow God to take us through the training of life, the patience we develop will give us not only the endurance to run the race to the end, but finish it well. “But those who wait on the LORD shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint” (Isaiah 40:31, NKJ)

6. PATIENCE RAISES THE WATER LEVEL OF OTHER FRUIT OF THE SPIRIT.
“But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.” (Galatians 5:22-23). It seems to be a spiritual law that the fruit of the Spirit are interconnected. Therefore, the more we have of one, the more we will have of the rest. What that means is that as we have more love, we will have more faithfulness; as we have more joy, we will have more peace, etc. Therefore, as we allow the Holy Spirit to work patience within us, we will see the water level of love, joy, peace, kindness, goodness, faithfulness, gentleness, and self-control all rise to an equivalent degree within us.

7. PATIENCE PRODUCES CHARACTER AND HOPE.
“Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us” (Romans 5:3-5). Patience is truly a virtue, and those who have it tend to have great character as well. But here we see that those with patience also possess hope. Why? Because those who wait patiently on the Lord have seen Him move, and know that He will move again. Their hope is in the Lord because, through patience, they have seen the depths of His grace, mercy, and power to overcome any of life’s obstacles. And, they know that He will do it again!

May God grant you the patience in every circumstance of your life to see the orchid bloom!

childrenofdestiny.org
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I cannot emphasize enough how blessed I have been by our circumstances. The trials of learning to live with autism have shaped me into a much better person. This has come only by the grace of the Lord, not my own doing. All glory to HIM.
Sometimes I feel guilty that my reluctant maturity has come at the expense of my girls. Bless them. They will never know how much I love them and how they have humbled my prideful heart and mind. Through their difficulties, my hard heart was broken and by the Holy Spirit, it has been abundantly refilled, overflowing and so much better than anything I could have come up with on my own. In a way, they saved my life. They are the instruments in HIS hands anyway.
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Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces.
I cried out to the LORD in my suffering, and he heard me.
He set me free from all my fears.
Psalm 34:5-6

justice anyone?

2006-05-03T17:15:00.000-05:00

This says it all:

Moussaoui, as he was led out of the courtroom after the 15-minute hearing, said: "America, you lost. I won." He clapped his hands as he was escorted away.

Unbelieveable.
Disgusting.

Emma Jean has put the birds around here on notice...

2006-05-03T07:09:00.000-05:00

She made this sign and posted it the other day:

She also made one warning the wind to cool it, but it blew away before I could photograph it, LOL. I asked her if she actually thought she could quiet the wind and she replied, "Well, yeah. Maybe. Why not?"
Remember, this is the child who told me that she wanted to BE Jesus when she grew up. Maybe she was practicing with the wind thing.

Abby, ever the animal lover, made this sign:

She said it was so if anyone lost their kitty, they would know that it would be safe here. She posted it in the backyard. Not sure how many folks will see it. LOL

Little loves. Both of them are my little loves.

I have come that they may have life, and that they may have it more abundantly.
John 10:10

Recovery

2006-04-15T07:37:00.000-05:00

At the midway point of Autism Awareness month I wanted to post this letter written by Catherine Maurice. Her books, "Let Me Hear Your Voice" and the "ME book" were the first two tomes about Autism I read. I will be forever grateful to Dr. McCallon for such excellent advice upon diagnosing Abby. Catherine Maurice's books gave me the tangible hope I needed to get this journey underway.
I am posting this letter as a reminder to everyone that Autism is not a "culture."
It is also not a death sentence. There is hope, always hope and recovery DOES happen. It happens around here everyday.

We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where Jesus, who went before us, has entered on our behalf.
Hebrews 6:19-20

Recovery
by Catherine Maurice
A parent, author, and editor of several books on autism and its treatments, Catherine Maurice responds to the letter of invitation for this special autism issue of Leadership Perspectives in Developmental Disabilities.

I have a doctorate in literary criticism, but it does not take an advanced degree to detect a certain level of skepticism in this letter of invitation. These questions seem rather biased against early intensive behavioral intervention (1) and the possibility of recovery from autism. Far from displaying any welcome or enthusiasm for either of these concepts, this letter seems to be inviting attack, from every possible angle.

Are there ethical issues associated with recovery?
What is the economic implication of wide scale recovery attempts?

Just substitute the word “cancer” for “autism” and any “lay person” could detect a slightly subversive note:

Are there ethical issues associated with recovery from cancer?
What is the economic implication of wide scale attempts to recover people from cancer?
It seems to me that these questions amount to little more than a call for ammunition against the rising demand for science-based, effective treatment, which at this moment in time happens to be anchored in the field of applied behavior analysis. Yes, aiming for and achieving recovery from autism is expensive. So is chemotherapy. So is a lifetime of state-supported custodial care. Why would we not attempt to recover anyone from cancer, or autism? No, we cannot guarantee cure or recovery for anyone, but is that sufficient reason to lower the bar? Do we start deciding how many people should have access to science-based treatments for cancer? Do we start deciding how many children should have access to ABA?(2)

Is the concept of recovery a useful term to use?
Is there data to substantiate recovery?

The very form of the questions implies that “recovery from autism” and the data supporting recoveries from autism are issues that are up for debate. The phrasing suggests that the correct answer to both questions is “No, of course not.” Again, think of the implications if we asked: “Is the concept of recovery from cancer a useful term to use?” It is only when we already hold an assumption that autism is forever that we question whether the term “recovery” is “a useful term.”(3) Perhaps a more neutrally phrased question could have been: “How can we define recovery from autism, and how do we know that it can occur?”

But let’s step back, and look at a more serious complication. What is problematic here is not only the implicit skepticism about recovery, but also the confusion, manifest in this letter and in much of the anti-behavioral backlash literature, between the goal of recovery, and the goal of bringing children effective treatment. We need to set both goals for our children, with the understanding that under our present system of knowledge, only some children will achieve the first goal, but all children with autism can and should be offered effective treatment. Furthermore, and again under that present system of knowledge, it is behavioral intervention that has published the most documented success in enabling children to learn. Whether or not recovery happens, behavioral intervention offers more concrete evidence of effectiveness in helping children to learn than any of the dozens of treatment options currently being touted as effective for autism.(4)

This letter uses a term, "recovery treatment procedure.” What is that? EIBI is not a “recovery treatment procedure” although it may have that effect on some children. All treatment should be designed to maximize a child’s learning potential, to bring him or her as far as we can. Is this letter implying that if you want to aim for recovery, you use EIBI (otherwise called “recovery treatment procedure”), and if you want to aim for something else, you use another kind of therapy? What other therapy would that be, and what data exist to support the effectiveness of that therapy?

No one I know has ever claimed that EIBI will produce recovery in all children. But we do know that intensive behavioral intervention can improve the prognosis for people with autism, and teach them higher levels of communication, social behavior, and independence. Undermining the notion of recovery and then calling early intensive behavioral intervention a “recovery treatment procedure” is another way of dismissing behavioral intervention – “those behaviorists promise recovery to everyone, and we know that can’t happen, so don’t bother with that nonsense.”

Is there evidence to imply that data suggesting recovery is an artifact of subject selection or other variables?

When I showed this question to my husband, he laughed and parodied the classic model of prejudicial questions: “When did you stop beating your wife?” Those of us who are veterans of the autism wars know that this question will not go away, no matter what data are presented, re-presented, or analyzed. It’s an easy attack, and one that is constantly repeated. If a child recovers from autism, the old guard is sure to offer one of three possible explanations.

1. He was very high functioning, and therefore “selected” for intensive treatment, apparently by people who have so little concern for ethics that they skew data any which way they can in order to claim success.
2. He was never autistic at all. (Sorry! We didn’t mean it!)
3. He was autistic, and still is autistic. Although he looks and acts recovered, he is actually a trained robot, conditioned to respond to certain stimuli - but, deep inside, still autistic.

If my own tone sounds impatient, I apologize. I used to be a lot nicer before I entered autism politics. But, after a dozen years, I no longer know what it will take to convince the people in power that the data are there, have been there for a while, and their job isto pay attention to the data. Moreover, the data do not “suggest” that early intensive ABA is effective in remediating many symptoms of autism, the data demonstrate that gains achieved through such intervention are real, and enduring.(5) There is data not only “suggesting” the possibility of recovery, but also validating it over time.(6) Why is this topic of early intensive behavioral intervention, its value, and its ability to produce recovery in at least some children still “hotly debated” at all? How many more decades will it take for the establishment to accept the evidence that already exists? It is astonishing to me that various special educators and psychologists keep calling for more data to substantiate the value of intensive behavioral intervention, and yet they themselves have produced no data to speak of that validate approaches such as play therapy, therapeutic nurseries, special education and psychotherapy.

When my children were diagnosed, it did not take long to discern that the data supporting early behavioral intervention far surpassed any empirical support for generic, “eclectic,” intervention, special education classrooms, therapeutic nurseries or the myriad fads and miracle cures that succeed each other. That data has only increased today. Do we really want to consign autistic children to a lifetime of sorting bottle caps, when we know now that many can learn more than we ever expected them to learn, if we intervene early enough, and care deeply enough to bring them science- based treatment models? With the field of applied behavior analysis producing study after study showing the value of behaviorally based teaching methods for people with autism, how much more debate do we have to engage in, as generations of autistic children founder?

Many parents (7) have become all too aware that special education programs, therapeutic nurseries, play therapy and each successive media-hyped new “breakthrough” for autism have for decades promised appropriate care for our children, and have delivered virtually nothing. Our children do not need parent substitutes. They don’t need special education that does not educate. Pseudoscientific “evidence,” notwithstanding, they do not need huge doses of vitamins forced into them. They need data driven, research-backed programs specifically tailored to their needs, their learning pace, their strengths and weaknesses. Behavioral intervention does not promise universal recovery. It does promise, if delivered by qualified providers, a better chance that some real learning will take place, and maybe, just maybe, some children will recover.

How do I know some children will recover? Because in addition to the published data referenced in this paper, professionals and parents keep reporting and documenting more and more cases of children recovering, every year since I have been involved in this field. Because I live with two such children. My two youngest - a girl and a boy - were diagnosed with autism when they were about 2 years old. They were diagnosed by psychiatrists, psychologists, pediatric neurologists and speech language pathologists, four out of five of whom used the word “autistic” to describe them. (The fifth used the term “pervasive developmental disorder,” one of several useless euphemisms spawned by the ever-more inventive DSM IV-R). Both children received intensive ABA treatment for 2-3 years. By the age of five, both children were documented as normally functioning. (8) As other parents I know are doing today, I held onto every piece of paper documenting my children’s symptoms, their deterioration, treatment, re-evaluations, and eventually, their recovery. These pieces of paper were written by people who had no interest in creating sensational miracle stories, no interest in selling “their treatment,” their method, or their belief, to anyone.

After I published my book, chronicling all of this, I was hit not only by dismissal from the professional community, but in certain quarters, by outright mockery. OK. Fair enough. I understand that such dramatic improvement is a novel concept, especially for people whose entire careers are built around the notion that they know how to treat autism, and that autism is forever. I understand that if you have built a reputation around your expertise in autism, you are not going to be very receptive to the idea that maybe, just maybe, you may not know what the most effective treatments are, or how to deliver them. I decided, with some weariness, that I probably owed the public some further evidence that my children’s recovery was indeed lasting, and real. I asked three of the original diagnosticians (none of them behavior analysts, by the way), to write a follow up paper on my children. (9) To these clinicians and researchers, I provided videotapes, school reports, standardized test reports, and whatever else I could think of that was not just “mommy’s opinion.”

Still not good enough. From the University of California (10), to Chapel Hill, to the halls of Yale, various “experts” in autism continue to make public statements about my children, whom they have never met. Well, what would it take, I ask myself? Another video? Dinner at my home? Opening our family life more and more to a parade of skeptics whose interests are vested – meaning truly vested both economically and personally – in seeing “residual autism” wherever they want to see it?

I don’t think so. I think I have run out of patience with the fact that the merits of EIBI and the reality of recovery are still “hotly debated,” and that nothing I say, no evidence that I present or that other families or professionals can present, will ever, can ever convince those who do not want to be convinced.

It’s easy to attack ABA by attacking the notion of recovery. So let’s just clear that one up, and move on. Recovery exists, and it is real. Last year, my oldest son finished tenth grade, my daughter completed ninth grade, and my son completed seventh grade. All finished the year on the honor roll or high honor roll. (The need to state some facts supersedes the need to be discreet about one’s children’s academic performance). I’m sorry, but there is no way that I or my husband could possibly “program” these children to succeed in biology, chemistry, advanced placement history, English and American literature, French, physics, algebra, geometry, etc. We couldn’t possibly keep up with the homework, for one thing.

None of the children received special assistance or tutoring since they enrolled in regular school in kindergarten. If they had, would that have proved anything? Think about the number of kids labeled ADD, or “learning impaired,” who receive extra academic attention or tutoring for one reason or another. It’s getting a little tough to define “normal” these days.

So how can we define recovery from autism, if grades and school placement and academic success or failure is not a consistently reliable criterion? Perhaps one helpful concept in thinking about recovery would be the absence of the defining symptomology for autism, especially with respect to communicative abilities and social functioning.

Ah, but what about our children’s social functioning? Do they have friends? Yes, they have friends. But how many friends do they have? Well, let’s see. How many friends do you have? After a while, the questions become almost absurd. But do they relate to their friends? Can they “put themselves in others’ shoes?” Can they think and speak with any abstraction, or originality? My youngest was just elected class representative, my daughter wept with me on September 11th. I would invite some of the most arrogant authorities to my home, so that they could observe the conversations that my kids can have with their friends, except for one tiny problem. I suspect that if those psychologists and psychiatrists and special educators observed the normal teenage behavior that goes on in our house, from self-conscious embarrassment, to joking banter, to arguments about chores, to abstract musings on politics, the response would be the predictable “they were misdiagnosed.” Other parents of recovered children report, almost universally, the same reaction.

To me, this is not just a matter of defending my story. If it were, I would have thrown in the towel long ago. It’s a matter of watching my friends, mothers and fathers, weeping for their children, knowing that a powerful teaching technology exists, but unable to access it for their child, blocked at every turn by an entrenched and stonewalling establishment. It’s hearing yet another mother on the phone, telling me that her three year old is learning more and more, but she cannot get anyone in authority to help her find and pay for an adequate number of treatment hours to ensure that his learning continues. It’s knowing that only a handful of good behaviorally-based programs exist in this country, and that, if this academic and professional resistance continues, we will not see any more any time soon.

· What are the barriers to providing recovery intervention?

Money, for one thing, A scarcity of trained providers in behavioral treatment, for another. But professional skepticism and a refusal to accept hard evidence play into which programs get funded and which do not. If a majority those in power dismiss EIBI, of course parents will be hard pressed to find quality intervention programs, and universities will not set up training programs to meet the need. The Federal government looks to academic and professional authorities to inform its decisions. If such authorities pooh-pooh the notion of recovery, and downplay the role of early intensive behavioral intervention, only the wealthy or lucky will access this intervention for their children.

· Are recovery treatment procedures varied or similar in nature?
· What are the critical elements of any recovery treatment attempt?

These are, in fact, good questions, provided we substitute the phrase “Effective, data-based treatments” for “recovery treatment procedures.” The Association for Science in Autism Treatment, (11) www.autismonline.org, a group of autism professionals and parents whose children have been diagnosed with autism, is working on compiling and disseminating information on these and similar questions. We believe that there is still much work to be done in defining the critical components of effective behavioral treatment models, and in defining the critical skills and knowledge demanded of a trained and qualified provider. We support the work of the Behavior Analyst Certification Board, and we are currently exploring ways of funding, researching and developing a professional training model for graduate students who wish to specialize in ABA and autism treatment. It would be very helpful if the professional community could leave the debate stage behind, and help us in our attempts to bring accurate information to families, and increased access to effective treatment for their children. We face an uphill battle, and we need all the help we can get.

I work with women and men whose children have not recovered, and I count them as my friends and colleagues. Listening to the struggles of my friends, knowing the longing of their hearts, I do pray that one day science will produce an easier, faster, quicker and more effective treatment than that promised through ABA. I hope that current research on neurobiology, immunology and genetics will lead us there. But meanwhile, those parents know, and I know, that there is a difference between being “open-minded” to promising new directions in autism treatment research, and continuing to buy into those myriad treatment options that have had decades to produce substantiating evidence, and have failed to do so. ABA can offer our children a lot. Let’s pull together to support it, while at the same time supporting quality research into the complicated causes of and potential cures for autism.

(1) When I refer to behavioral intervention, applied behavior analysis (ABA), or early intensive behavioral intervention (EIBI), I mean intervention that employs the principles and methods of behavior analysis, not generic early intervention programs that purport to be “behavioral” but actually employ only a few superficial behavioral techniques.

(2) Jacobson, J.W., Mulick, J.A., & Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism: General model and single state case. Behavioral Interventions, 13, 201-226. [Offers a well-reasoned analysis of this topic]

(3) The question is illogical as well because the word concept is being used to mean the word term.

(4) Clinical Practive Guidelines: Report of the Recommendations. Autism/Pervasive Developmental Disorders, assessment and Intervention for Young Children, 1999 Publication No. 4215. New York State Department of Health, PO Box 2000, Albany, New York 12220.

(5) For an overview of research on this subject, see:
Green, G. (1996). Early Behavioral Intervention for Autism. What Does Research Tell Us? In C. Maurice, G.Green, and S.C. Luce, (Eds.), Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals, Austin, TX. Pro-Ed.
Clinical Practive Guidelines: Report of the Recommendations. Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children, 1999 Publication No. 4215. New York State Department of Health, PO Box 2000, Albany, New York 12220.

(6) Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 4, 359-372.
Perry, R. Cohen, I., & DeCarlo, R (1995). Case Study: Deterioration, autism, and recovery in two siblings. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 232-237.

(7) I speak with many parents, and have received hundred of letters and phone calls from parents over the years. But I do not speak for all parents; No parent speaks for all parents, just as no professional speaks for all professionals.

(8) Maurice, C. (1993) Let Me Hear Your Voice, A family’s triumph over autism. Knopf, New York.

(9) Perry, R., Cohen, I., & DeCarlo, R. (1995) op.cit.

(10) Last year, I sent Dr. Bryna Siegel, of the Langley Porter Psychiatric Institute at the University of California, a letter, asking her to comment on repeated parental reports that she has made disparaging comments about my children. My letter was offered to her as a private communication, an opportunity to address her concerns, and mine. Dr. Siegel did not respond to that letter. But personal attacks against my children or me are only part of what I see as a wider problem. What concerns me as well is the sustained attempt on the part of many such “experts” to discredit early intensive behavioral intervention for children with autism, even to the point of serving as expert witnesses for school districts who are fighting parental requests for such intervention. For years, I have been growing increasingly alarmed by the articles and books of such authorities as Shirley Cohen, Gary Mesibov, Ph.D, Stanley Greenspan, Ph.D., B.J. Freeman, Ph.D., Catherine Johnson, and many others. For years, I have been tracking such books and articles, and I have seen dismissive and inaccurate descriptions of early intensive behavioral intervention as well as insistent denials that recovery is possible. In many of these publications, ABA is still painted as child abuse, or little more than some superficial training in skills. Parents who choose ABA for their children are portrayed as delusional, blindly following the hope of recovery and willing to do anything to force children into compliant robotic behavior. Obviously such caricature can only render parental access to effective treatment ever more difficult.

(11) The Association for Science in Autism Treatment. 175 Great Neck Road, Suite 406, Great Neck, N.Y. 11021. Tel: 516 627-8943. Fax: 516 466-4484.

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Catherine Maurice, Ph.D. is the author of Let Me Hear Your Voice, a family’s triumph over autism (Knopf, 1993); the principal editor of Behavioral Intervention for autism, a manual for parents and professionals (PRO-ED, 1996); and principal editor of Making a Difference, Behavioral Intervention for Autism. (PRO-ED, 2001).

not exactly more of the same, but definately some of the same....

2006-04-07T06:56:00.000-05:00

We did a bunch of tests a month ago and we went in Wednesday to learn the results. First of all, when I say we did a bunch of tests, I mean that literally, WE do them. I have to collect all these samples in take home kits and then send them off via FedEx, or UPS, etc. for analyzing. It is a PIA. I have to restrict certain foods for some of them, fast Abby for others, only follow an abbreviated vitamin protocol for others still. Some are 24 hour collections, others are timed. Ugh. It is nervewracking to keep it all straight and to collect them accurately. I always worry that I am doing something wrong.
First the good news:
Her yeast looks good. YAY! PTL! This means the modifications that we have made using the SCD and digestive enzymes are working and we can continue to allow limited dietary infractions. I am soooo glad. I was really nervous the test would indicate a need to return to the hard core Gluten-Free/Casein-Free, sugar and all its derivatives-free, yeast-free diet that we followed without a break for a full year. Now we still do follow this for the most part, but the occasional (very occasional) french fries or birthday cake and even Pizza Hut thin crust pizza is okay. This means a lot more freedom for us as a family to go out and eat, etc. So this is really good news.
The not so good news:
One of the tests we ran was on Abby's neurotransmitters. Her incresed inability to attend has worried me for more than a year. The ABA people say that we can improve it by modifying her behavior, but I don't know. Maybe that is true, but I can't ask her teachers to take all this special time out to keep her on task and I am not sure I even agree with them because even highly preferred activities are very hard for her to stay focused on anymore. Her SLP has mentioned her inattentiveness more than once. Anyway, this test was to see how her brain was working to produce dopemine and seretonin, etc. The results were unusual (the docotor's words). The tests indicate that she is producing everything, all 8 chemicals that our brains require to function properly, and in very high amounts. He said that this indicates that the connection is faulty, rather than the equipment. Now we are adding some new stuff to her regime to hopefully facilitate connection: TravaCor, EndoTrex (theanine) and Calm-PRT. To be honest I don't really know what to make of this information or how the new protocol is supposed to work on the problem. I have emailed a neuro friend of ours to see what he thinks. I know I should be relieved that we aren't going to have to medicate this ADD issue, but after all our hard work, I guess since starting Emma Jean on Paxil made such a huge impact on hers (and ours) quality of life I halfway hoped that there would be somethng to help Abby like that.
The bad news:
We did another toxic metals screen and her lead level is OFF THE CHARTS!!!!
We have to begin chelating again. I hate this. We are using a different chelating agent this time and it will be oral instead of transdermal, but her behavior was terrible the entire year that we did this before. She started doing all kinds of weird stimming (finger flicking, hand-flapping) and it scared the bejeebus out of me. Regression is a very real and looming fear at all times when dealing with ASD's. When I see a bunch of problematic and frankly "autistic-y" looking behaviors suddenly emerge it is terrifying. I told the doctor that we are doing everything we can to get her socially and mentally ready for school next year and I am loathe to get her weirdness all riled up and then send her into the classroom when we've made our case for inclusion already, KWIM? He says he has never seen the kind of things we experienced with DMPS with the DMSA chelating agent we will be using this time and we are only doing it on the weekends. I am still nervous. I am also just flummoxed about the source of this stinkin' lead. What the heck?
Anyway, that's our mixed bag. I have to schedule a big ol' blood draw to test her organ function too. Joy.
Time to break out the diazipam.
Yours, O LORD, is the greatness and the power and the glory and the majesty and the splendor, for everything in heaven and earth is yours. Yours, O LORD, is the kingdom; you are exalted as head over all.
1 Chronicles 29:11

we're here! we're weird! get used to it!

2006-04-01T11:18:00.000-06:00

April is Autism Awareness month. Unlike cancer or diabetes which can kill, autism does not shorten the affected person's life span (mercifully). Because my beautiful and awesome little girls have this disorder and because I think they are wonderful and dazzlingly unique creatures perfectly designed by God, I have always struggled with the language around the disorder. "Cure Autsim Now!" etc. When I see my girls or their affected peers, I find myself thinking, "Cure them of what? What needs to be cured?" At times I have thought that the world needs to be cured for how negatively and dispassionately they view autism and the people who have the disorder. At any rate, I understand that rallying behind acceptance would not generate nearly the interest or funds for research that looking for a cure does so I have no beef with the use of the term, nor am I offended by it. But there are adults with the disorder who are very, very offended and I can see their point. What if being brunette was an anomaly and the world was always rallying to "cure brown-headedness." If you were a brunette, and managed to live a satisfying life as such, that would sting and probably ruffle your beautiful russet tresses. Do ya'll see where I am going with this?
I want to share this essay. It was a speech given by Estee Klar at a NAAR rally recently. I think she sums it up beautifully.

The Economy of Pity

My background is unique in discussing the economy of pity. I began my circuitous career as a curator of art, later a director of a large event, then a corporate fundraiser and marketer for two major health charities. I also summized that art made me an effective beggar of money (not many love to fund art, to my chagrin). After Adam was diagnosed with autism and NAAR came to Toronto, and coming from Jewish family entrenched in the Hebrew ideal of tzedakah (helping those in need), it seemed natural for me to raise money for the cause that was dear to my heart: autism. At the NAAR Kick-Off Luncheon, I was asked to speak about autism. I sat and waited for my turn as Corporate Chair, becoming agitated already with what I was hearing. I was listening to leaders talk about how they “lost” their child, how devastating it was for them, poems elicting a tremendous amount of pathos from the audience. In my speech I instead spoke about research to help us understand our children with autism better. I did not talk about cures – I spoke about awareness. It was my hope that others would share the same optimism. I quoted Paul Collins:

“Autists are described by others – and by themselves – as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, “Where’s that man’s arm?” But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.” -- Paul Collins, Not Even Wrong.

I was approached afterward by educators and parents, who said they thought my speech was the best. While I am a very good speaker, I considered that my words about acceptance was the source inspiration as opposed to those mothers weeping at the “loss” of their children. It didn’t take long – a meeting with Glenn Tringali, a phone call with Alycia Halladay, appealed for my continued support to sit as Chair of NAAR. I remember sitting at The Four Season’s Hotel with Mr. Tringali, saying that if I joined, my mandate would be to raise awarness – the brand that I was selling. I addressed a consideration when Dr. Buxbaum made a quote about being able to prenatally test for autism, and to what end. A snarky email later, addressed to me by Joseph Buxbaum, and no return call from NAAR agreeing to my wish, I quickly realized that NAAR’s marketing appeals are not acceptable, if in fact inflexible. This is not to say I haven’t met scientific researchers funded by NAAR who are themselves questioning the marketing and the research, and in order to protect them I will not reveal their names. Believe it or not, there are scientists out there who have come to the same conclusion that I am revealing here. Similar to the difficulty of pulling away from ABA to try other methods of teaching Adam, leaving the gods of research initially made me uneasy. Afterall, what might the research tell us? Who was I, not scientific in the least, to question the gods? Once looking carefully at the bulk of research, I realized that it will go on with or without my support. It doesn’t need me. There are people who will find the genes, who will sell the pills, who will abort the fetus. The only thing I can keep doing, we can keep doing, is to keep talking. Give speeches, make exhibitions, run media campaigns. Did you know that eighty per cent of fetus’ with Down Syndrome are aborted? Isn’t that number shocking? I think of little B running down the hall of Adam’s integrated nursery school, a huge smile on her face, living life to its fullest and wondering what is wrong with my wiring that I’ve missed out her type of joy. Having children who are “different” is an unexpected experience, a positive one, and I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one.

NAAR recently posted a book about accepting autism on their website. While it’s an attempt, I still appeal to them to change their fundamental error – to suggest that autism requires a cure at the utter dismay and disagreement of those with autism. I’ve asked NAAR to consider giving me an opportunity to voice these concerns, to change their semantics, and to conduct research only directed by autistic persons and to keep one ultimate goal in mind – the acceptance of and quality of life for families with autism as they are. Change, if it happens at all, will be slow. Now partnered with Autism Speaks, NAAR has an annual budget in excess of $30 million, with CIBC World Markets in the US trying to raise more “miracles,” and Home Depot is doing their part donating $25 million to the cause.

I certainly can’t offer a matching grant of that amount to get NAAR to listen to me, but I am a parent who “can speak up for my child,” and do so by listening to others with autism as well. I can’t compete on the same playing field with cause-marketing thrusts to make companies appeal, with their good intentions, to customers. What I suggest companies are missing is a due-diligence. Do they know what brand of pity they’re paying for? In War Against the Weak, Edwin Black writes about the first three decades of the 20th century when American corporate philanthropy “combined with prestigious academic fraud” created the pseudeoscience of eugenics that “institutionalized race politics as national policy. The goal: create a superior, white, Nordic race and obliterate the viability of everyone else….How? By identifying so-called `defective’ family trees and subjecting them to legislated segregation and sterilization programs. The victims: poor people, brown-haired white people, African Americans, immigrants, Indians, Eastern European Jews, the infirm and really anyone classified outside the superior genetic lines drawn up by American raceologists.” We always have to ask ourselves what is the end to this means of genetic research. Must we simply accept the good with the bad in the name of progress?
War Against the Weak By Edwin Black discusses how American corporate philanthropies launched a national campaign of ethnic cleansing in the US.

It seems to me, after having made hundreds of solicitations to corporations myself over the years, that no one thinks twice about the brand of pity they disperse. Pity is one and the same and it just makes us plain good. There is little discrimination going on the world about who is soliciting for what. So long as the message is filled with a little bit of logos and a whole barrel of pathos, the cause is whitewashed under the guise of “doing good.” It is a problem with altruism, actually. This is how Nietzsche felt about so-called `benevolence’:

Is it virtuous when a cell transforms into the function of a stronger cell? It must do so. And is it wicked when the stronger one assimilates the other? It must do so likewise: it is necessary, for it has to have abundant indemnity and seeks to regenerate itself. One has therefore to distinguish the instinct of submission in benevolence, according as the stronger or the weaker feels benevolent. Gladness and covetousness are united in the stronger person, who wants to transform something to his function: gladness and desire-to-be-coveted in the weaker person, who would like to become a function. The former case is essentially pity, a pleasant excitation of the instinct of appropriation at the sight of the weak: it is to be remembered, however, that “strong” and “weak” are relative conceptions.”

Therefore, the whole idea of charity segregates people into strong and weak and forever keeps the “weaker” members of society at a disadvantage, serving only to marginalize them. On the other hand, where would the Stephen Hawkings of the world be without the help, the selfless behaviour, of others? Love from his caregivers was what kept him alive, and archeological digs have revealed the remains of people who evidently lived for long periods of time being crippled.

I will posit here, in this initial draft, that Autism is the one “disability” that may change the course of philanthropic history, that may be able to jolt citizens into giving with knowledge as well as with heart. Autism is neither a race nor a disability, it is a way of being. It may even be viewed as a course of human evolution, and most illustrative of all human difference. On the surface, it appears alien, and from within people with autism maintain huge capability and intellect, often able to communicate themselves through alternative means, if presumed competent, if given the chance, much like Stephen Hawking. Organizations that seek to fund this “difficult and mysterious disorder,” to "cure it," as a war waged against the autistic population, instead of listening to them, may become baffled at the ability of autism, despite its superficial dysfunctions. It is finding itself at an intellectual and philosophical divide with those they are seeking to cure. Parents are baffled, or angry. Afterall, aren’t they just good people trying to help others? Shouldn't parents who struggle day in and day out, whose expectations have been taken from them, have pity bestowed upon them?

I say no. I say that as difficult as it is for many families, who experience a "spectrum" of challenges, this is life's test. "The best thing about the future," said Abraham Lincoln, "is that it comes one day at a time." We have time to reframe our expectations and to find joy in autism.

Corporations, innocent and unknowing of this divide and the abilities of those with autism are giving money – perhaps one day to find themselves confronted with violations against human rights. I don’t think they are prepared. People with influence (those in control of the media), appear shiny and credible in the eyes of fellow CEO’s. Logos – the rational appeal of statistics and numbers manipulated for Pathos is the thrust of this economy. The most “underfunded disorder,” “1:166 children affected,” mixed with a little “epidemic” lingo is enough these days to convince a CEO to give. On top of that some media profile, signage and press releases for being a “responsible corporation” -- another rational and economically sound reason to give.

Autism requires donors to do their research. It requires others to talk to people with autism as the experts of it. It requires philanthropists to fully understand the motives of charities asking for money for the sake of a cure.

"Autism is finally speaking," says Suzanne Wright. "Now the world will listen...Be loud, be brash, be emotional, be angry," added Bob Wright.

"Don't accept it," Ms. Wright continues.

Yes, Mr. And Mrs. Wright. Autism is speaking. But not through you. "

The Joy of Autism: The Economy of Pity

all is well

2006-03-26T10:36:00.000-06:00

Things have been going really well lately. The girls' DAN! doc made some changes to their regime of vits and supplements and we have seen big improvements in both language and cognition. PTL! We are waiting for some lab results that tested Abby's neuro transmitters and will hopefully tell us the best next step to take when it comes to her attending. In the mean time, we are just keepin' on keepin' on.
I do have a little abacus funny that I must share.

The other night at dinner (jambolaya for us and chicken and rice, etc. for the girls), Jimmy and I were discussing our plans for tomorrow and I asked him if he'd want a ham steak in the morning before church because I had one in the freezer that I would pull. Abby asked if she could have some with her breakfast too. I was surprised since she doesn't really like ham, but of course agreed. This was the conversation's conclusion:

Abby: "Thanks mommy. I want to have exactly what daddy is having for breakfast tomorrow."
Daddy: "Oh good. That's great Abby."
After a very brief pause Abby pointed her fork in the direction of Jimmy's dinner plate and asked:
"Excuse me, Daddy? Are you having any of what's on your plate now for breakfast tomorrow?"

My little diplomat. She knew she had to be polite, but she was hedging before she really committed to anything. She cracks me up.

banana splits...

2006-03-15T21:24:00.000-06:00

I know this is going to be a whiney post, but I am going to whine about it anyway. Think of me what you will.
For months now, the girls have pestered me about banana splits. They can and do eat bananas. Needless to say, they recognize one when they see one. There are very few "treats" they can have regularly (though after a full year sans any kind of potato, the occasional french fry or Lay's versions of Pringles sure do make them happy now). As a reward for them (or mommy ), we stop at Sonic for a drink and they spotted the sign for those junior banana splits and asked me about them. They have hounded me since so I figured if I could find a way to make one possible I would and Jimmy's most recent absence semed like the perfect opportunity.
$40 later (that's right FORTY!!!!) I was able to purchase all the ingredients necessary to make a reasonably safe, with consideration to all their restrictions, banana split.
Oh they were so excited.
So tonight, after a pretty rough day, I made them for dessert.
Do you think they liked them?
NO.
My reaction to their dissatisfaction with the confections is so ridiculous. I feel unreasonably mad (the money and effort involved) and irritated. And frankly, sad.
Why can't even the most easy things, the most mundane, be enough? Ever?
Ugh.
Anyone in the market for some rice milk ice cream, GF/CF whipped cream stuff (at $7 per 3 oz. container), a real whipped cream cannister and nitrous cartridges, phoney dessert sauces and stupid sugar-free, but made with Splenda sprinkles?
*sigh*

And you don't even want to know the finances expended for hot dogs or rice krispie(esque) treats treat times past. Equally refused.

Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12

smells like school spirit

2006-03-09T13:52:00.000-06:00

The girls were accepted! Hooray! We are thrilled and praising God and so thankful.
They are pleased. They have been excited about going to school next year for a long time. They had no idea the home interview last week was associated with a particular school. I think they would be excited no matter where they went. That said, they have asked about Covenant in particular more than once.
I am really excited though.
It was the weirdest thing. I was out when the mail came. And the girls were out front with daddy. The mailman handed Abby the mail (which she thought was the coolest thing since pressed apple juice). She took that envelope from the little bundle, handed it to Jimmy and said, "Here daddy, it's for you. It's from Debbie."
He didn't know what she meant.
But I do.
When we went to the school a few times to drop off this and that, we visited with Debbie in the office. Abby recognized the Covenant school emblem and made that association.
She is such a little enigma.
Anyway, we are pleased as all get-out. The door has been opened, the prayers answered. Now we will see what they do with it. I am nervous, but joyful in my anticipation.

Non nobis, domine, sed nomini tuo da gloriam.
Not to us, O Lord, not to us, but to Your name give glory.
Psalm 115:1

and now.....we wait

2006-03-01T06:51:00.000-06:00

Thanks for all of your support and prayers.
It's over.
I know that ya'll's commitment to our family had a great deal to do with the way things went tonight, especially my state of mind.
They arrived promptly at 6 pm and we were busy up to that last minute. We had to get the girls fed and then changed into something cute and clean before they got there and then there was me who needed to totally redo myself after cleaning around all day. They were very complimentary of the house (and it did look really cozy and inviting if I do say so myself) and neighborhood. The girls were just themselves, although Abby was pretty wound up and did some spinning at the end, she does that to unwind sometimes (seems counter productive, but it works for her). They were polite, used good manners, responded well to any correction and were very nice little hostesses.
In true Abby fashion, despite not really knowing why this visit was important, she honed in on who the important player was. When we opened the door to our guests, she looked at the two ladies, politely said her hellos and then as if by sonar, promptly turned her attentions to the Lower School Director. She said, "Hi. My name is Abby. What's your name?" The director replied in kind and Abby responded by telling her, "It's nice to meet you. You look very pretty tonight."
Can you believe it?
Later, the girls did some coloring, etc. while the adults visited and she made the same lady a heart shaped card with glitter no less. Jimmy and I got a good laugh about that after they had left. Leave it to Abby to economize her limited attention so effectively.
The other the interviewer was very appreciative of our forthcomingness about their journey. It was another affirmation that we had made the right decision to fully disclose. "All glory be to God," were her precise words.
AMEN!
One totally unexpected and cool thing that came out of all this was that even though I have felt alone in the trenches so much of the time throughout the last almost three years, I realized tonight what a blessing it actually was that Jimmy was not consumed by the whole remediation process like I was. He has a different and positive perspective on the girls that I am just now learning to cultivate. Unlike most parents who see all the good things their kids do and find delight in their funny little quirks, I have been trained to look for the deficits and the trouble spots and I am figuring out as we enter the world of the "earth people" that I need to not lose sight of their coolness and strengths in the midst of helping them. I don't know if that makes sense, but Jimmy's perspective on them and our family is really neat and tonight was just one of those nights that I am very proud to be married to him. He is a good daddy and husband.
All in all, I think it was a success. No matter the outcome, I was proud of our family tonight.
The director of the Lower School told me that the decision will be made on all fall admissions on March 1 and letters go out Friday.
Stay tuned.
Ah, Sovereign LORD, you have made the heavens and the earth by your great power and outstretched arm.
Nothing is too hard for you.
Jeremiah 32:17

three days....

2006-02-20T10:13:00.000-06:00

We've been busy trying to get this house in some kind of order to prepare for the upcoming in-home interview with the folks from the prospective school. We recently retrieved all the stuff we had put in storage when we had the house on the market. It is good though, because the timing of it all forced me into spring cleaning mode and that was really needing to happen. What I've learned:
We have a TON of books and I cannot part with any of them.
Our house is really tiny.
All discarding of items however old, outgrown, chewed on or useless, must be done under the cloak of darkness because Abby grieves these inanimate objects as if they are long lost friends upon which we are inflicting a cruel fate. It is sweet but a nuisance at the same time.
Outside of organizing and clean-up, we spent the very cold weekend holed up and huddled in front of the fireplace working on a 500 piece puzzle of Renoit's Spring Bouquet. It was great fun. I really hated to see the weekend close. But now it is back to business. We have a lot of little loose ends to tie up before Wednesday: Letters of recommendation to collect from their old preschool and BI, finishing up the financial aid packet, and of course making our humble home as warm and inviting as possible. I know it will not be what the interview team is accustomed to, but I am okay with that. It is lived in, but clean and frankly, one of the many blessings that has come with the demands of remediation of the girls' disorderedness has been a freedom from the desire to acquire. Praise God! We know that things and stuff and nonsense are not what makes for a happy heart or a happy home.
Well, that's all from the front today friends. Please keep us in your prayers this week. I may not post again until after the interview on Wednesday. This is my scrapture this week:
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7

oh the things they will say!

2006-02-18T23:42:00.000-06:00

The girls and the funny things they say. I have collected a few statements and "shuebonics" over the past few weeks. Thought I'd share them for your entertainment:
"Scrapture" ~ Random and completely arbitrary proclamations made by Abby which she then follows with the question, "Is that in the Bible now?" I.E. at the dinner table:
All people who do NOT put hot sauce on their eggs will get an A. If you put hot sauce on your eggs, you will get an F.
Is that in the Bible now?"
Emma Jean on Steve Martin in the newest Pink Panther movie, "He has a moustache, but not a single beard!" then much merriment ensues at this notion.
Abby's response to Emma Jean's suggestion that one of our community throws is a clanky (what they called their blankies in their earlier days), "It is NOT a clanky. It is just an ordinary blanket."
Emma Jean's conclusion about what it takes to be a real gymnast:
"First I have to learn how to do the little things, then I can be a teenager and do the big things, like those teenager tumbler girls. And I have to eat all my carrots. Right mommy?"
Abby to Dr. Rao, "I am doing swimming now! Today I did motor boat glide. You should really see me do it. You can come watch me next time."
Another Abby proclamation, "When I grow up and I'm a teenager, I am going to stay up all night, just like you mom and dad."
Emma Jean at play with her Ello creations, "How much does this place (gesturing around our house) cost anyway? Ten bucks?"
After church I turn to observe Emma Jean asking a classmate's daddy with a great deal of skepticism in her voice, "Are you a father?"
He answered, "Why yes. Are you a daughter?"
She replied, "Uh, well perhaps. We are really just a couple of kids." She shrugged, gesturing to Abby.
Abby's opinion about going to church, "I LOVE going to church with my family because I love God.
And Jesus.
And YOU!"
Then she does a little dance around the furniture.
And it just doesn't get any better than that.
I delight greatly in the LORD; my soul rejoices in my God.
Isaiah 61:10

surprised by grief

2006-02-10T20:49:00.000-06:00

Do you know what I mean? We are going along, all is well or some facsimile there of, and then boom! There it is. My old and unwelcome riding companion, grief. Ugh.
Grief pulled a drive-by today. It has left an open wound.
Not as big as it used to be and certainly not as deep, but it still stings and makes me cry.
I am making a proclamation that flies in the face of those tired sayings people like to trot out when they don't know what else to say.
Time does NOT heal all wounds.
There I said it. Time and its so called medical expertise can kiss my fanny.
Today the director of the lower school that we are applying to for the girls' next year called. She told me how much she appreciated the forthcoming and informative essay I wrote about the girls for their application. In addition to testing and a in-home interview, the school requires each parent's testimony and an essay detailing (their word) why we chose their school. Oh, they also have us read the Dorothy Sayer essay so we can discuss the principles she addresses at some later date, presumeably the interview. Anyway, it turns out this director's background is in Speech Therapy and she even worked for EI for some time. Her daughter is an OT whose "passion" (emphasis hers) is autism. She explained her postion that while she has special training in these areas, her teachers do not. I counter explained that we do not expect anything of the sort and if we thought the girls needed special expertise then we would not waste our time or theirs by applying to the school. Or the $300 plus for the whole application process, but I didn't say that part of course. Anyway, to make a long story shorter, she wants to
a) come along to the in-home interview scheduled for next week and
b) observe them in some kind of academic or social type enviornment with peers.
I told her that I would call their consultative therapist at BI to see what we could set up. Here is where the drive by occurred. She went on to explain that while she wants to give our girls every opportunity to be accepted and be a part of the school, she alone does not make the decision that there is an entire board that she will need to (and here's the arrow) "convince." And in order to do that, she needs to be armed with as accurate information and profile of the girls that she can present. I am confident that her confidence in their ability to perform in a typical classroom will either be the deal maker or the deal breaker. She could just prove to be their best advocate.
I maintained my composure and totally heard what she was saying, but when we got off the phone my heart broke into a thousand little pieces all over again. It grieves me to think about anyone needing to be convinced to accept my girls. That they should have any kind of special need that would demand "convincing" as a result of it. I can't really articulate it well, but it just hurts. It reminds me that we have not been playing in the same sandbox as everyone else all this time and I hate it. Not for me so much as for them. I don't expect things to be easy, but maybe just not quite so hard.
Anyway, Lori called me this evening, well after school hours, and I gave her the low-down and permission to speak with the Lower School director. I told her that she and the director could set up whatever they saw fit and that all they needed to do was tell me when and where to show up with the girls. I am so thankful for the people at BI. Thank you GOD for Lori! After I relayed the conversation the first thing she asked me was, "She hasn't met the girls yet has she?" She went on to explain that every time they have been in the process of transitioning a kid into a school program, the teachers involved are only worried because they have a preconceived notion, no matter their experience or lack there of with ASD. I got the feeling from listening to the director that she was concerned about disruptive behaviors, which mercifully the girls do not practice, at least not beyond the kind of getting carried away by a fit of giggles or talking when they shouldn't that the average new student might get caught up in. Praise God for His grace and mercy. So things stand for now. I feel a little bit better after bathing myself in the praise music all day and occupying myself by doing for others in need. That really helped. I prayed a lot too, for peace, for relief, for comfort.
His will be done.
That's the news from the front.
Stay tuned.
Sara Groves' "What I Thought I Wanted" fit the theme of the day so I'll close with her lyrics:

Tuxedo in the closet, gold band in a box
Two days from the altar she went and called the whole thing off
What he thought he wanted, what he got instead
Leaves him broken and grateful

I passed understanding a long, long time ago
And the simple home of systems and answers we all know
What I thought I wanted, what I got instead
Leaves me broken and somehow peaceful

I keep wanting you to be fair
But that’s not what you said
I want certain answers to these prayers
But that’s not what you said

When I get to heaven I’m gonna go find Job
I want to ask a few hard questions, I want to know what he knows
About what it is he wanted and what he got instead
How to be broken and faithful

What I thought I wanted
What I thought I wanted
What I thought I wanted
What I thought I wanted

Staring in the water like Aesops foolish dog
I can’t help but reflect on what it was I almost lost
What it was I wanted, what I got instead
Leaves me broken and grateful

I’m broken and grateful
I want to be broken and grateful
I want to be broken, peaceful, faithful, grateful, grateful
I want to be broken, peaceful, faithful, grateful, grateful

my new hero

2006-02-09T00:26:00.000-06:00

Dorothy L. Sayers

In the world it is called Tolerance, but in hell it is called Despair, the sin that believes in nothing, cares for nothing, seeks to know nothing, interferes with nothing, enjoys nothing, hates nothing, finds purpose in nothing, lives for nothing, and remains alive because there is nothing for which it will die.

Amen.

As part of the application process for the school we hope for the girls to attend next year, they ask the parents to read an essay (that was originally a speech) by Dorothy L. Sayers called "The Lost Tools of Learning." The piece outlines the school's fundamental approach to teaching and it is just incredible. It was written in 1947 and has not lost an ounce of relevance. In fact, I think her message is more urgent than ever before. I won't reprint it here, but this link will take you to a transcript.
One thing I am convinced of, if the girls are not accepted or we cannot find a way to pay for tuition, I will use a curriculum that is based upon the tenants outlined by Mrs. Sayers and by Charlotte Mason and teach them myself, find a cooperative for social skills building opportunities. I cannot believe I am even thinking about homeschooling, but given what's out there, if this school doesn't work out, it may be the only thing we can do.
Anyway, check out her essay if you are so inclined. It is fascinating.

from our hearts to the magic of the postal service....

2006-02-05T23:30:00.000-06:00

The applications for school are in the post.
It's in His hands. It's in His hands. It's in His hands.
That is my mantra and my petition to Him is,"Lord I want to leave this with you. Thy will be done."
As part of the application process, we had to submit our testimony individually. I am so lazy that before I sat down and prayed about it, I had planned on just printing my newest old one from when I was getting baptized. Can you believe I could not find the file anywhere? I actually got kind of indignant about it too. I am such a brat. I don't know why God puts up with me for one red minute. Anyway, as it always goes, ALWAYS, I was blessed by having to rewrite it for the application. I guess God still knows what He is doing. But I still think it was a little bit stinky to hide that file. JUST KIDDING folks!
Anyway, here it is. I literally felt compelled to blog it. I think it is not just my own need for seeing my words published. I sure hope not. Maybe someone will be blessed by the posting. All glory to Him.

I accepted Christ as my savior when I was seven, as a camper at Kanakomo Camp for Girls. I was so excited and my family was supportive and committed to shepherding my walk with the Lord as a child and a young adult. My father died when I was thirteen. In that loss at such a vulnerable age, coupled with teenage angst, I allowed for a wedge to be created between myself and God. I was in boarding school and that only eased my ability to look outside of the family fold for ‘guidance’ and comfort. While I fed my intellect, I starved my spirit. In my anger and resentment I distanced myself from God for many years.

When Jimmy and I became pregnant, my desire to know the Lord was undeniable and by His mercy, despite my best efforts, I had not snuffed out the light that had been given so freely to me twenty years before. After many hours on my knees, I recommitted my life to the Lord and when I opened that door, there He was, just as He promises in His word. I was truly born again. I do not believe that my salvation had been in jeopardy during those prodigal years of my life. I believe in the assurance of salvation as promised in the New Testament, especially in 2 Timothy 2:11-13:
“Here is a trustworthy saying:
If we died with him,
we also live with him;
If we endure,
we will also reign with him.
If we disown him,
he will also disown us;
if we are faithless,
he will remain faithful,
for he cannot disown himself.”

In April of 2004 I was baptized. I was so excited to proclaim my belief and commitment in a public act of obedience to Him. While our family has faced many trials in the last two and a half years, we have been blessed by experiencing so many of the promises found in His word, particularly the comfort and joy written of in Romans 8:15-17:
“For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, “Abba, Father.” The Spirit himself testifies with our spirit that we are God’s children. Now if we are children, then we are heirs---
heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.”

What a blessing to consider again what He has done for me and for my family!

"Many are the plans in a man's heart,
but it is the LORD's purpose that prevails."
Proverbs 19:21

just where did dionne and those psychic friends get off to anyway?

2006-01-30T23:10:00.000-06:00

I have been asked more than once, "If you had known then what you know now, would you still have had children?"
What a question.
Yes, I have twins on the spectrum, one HFA and one AS. Yes I am aware of the statistics on siblings and probabilities, etc. I still wrestle with whether or not our family is complete.
On the good days, "Maybe not!" I boldly declare, almost daring someone to try and talk me out of it.
On the bad days, I swear I will never again be so flip as I was on the last good day and I wearily and more resolutely than ever state,
"I AM DONE!"
At this point we work together fairly well. It would probably be pure hubris to add another cook to the alphabet soup mix, but today was a good day so I say,
Maybe not.

my intellectual emancipation

2006-01-29T14:11:00.000-06:00

"We need not to worry so much about the loudmouths as about the quiet acts of subversion and training by dangerous people, up and down the country, who on the whole keep their mouths shut."

~Lord Douglas Hurd

I've been reading a lot of political stuff lately, with my current invalid status and a very helpful husband, I have time to really indulge myself.The Alito confirmation hearings stirred my interest about a number of issues.
*See? I don't just obsess about autism related matters, people.
And with all my reading, my allegiances have not been tested, just further shored up. I have to say I can see why there has been such a movement away from traditional news sources to the internet and bloggers for information. The current media via newspapers and television is just ridiculous. There is too much money and power delegateded to too few information outlets. I don't want news that only supports what I believe. *Note this does not necessarily apply to my personal relationships. In those circumstances, I want to hear my opinion replayed to me but in someone else's voice, i.e. my husband's, etc. So any family or friends who happen read this,don't go getting any ideas about whether or not I really want to know what you think. Even if I ask you. Perhaps especially if I ask you. But when it comes to current events and the events that historically may have shaped them, I want the facts. I was blessed with reasoning skills just like the next fellow. I don't want someone's or some entity's analysis presented as truth; I can make that determination for myself, if given the factual information. Anyway, the only way I can get to that stage of the game is to listen to or read two totally extreme opposites and then hash it out with whatever other sources I can find to answer my questions. It is frustrating that everything I can easily access is tainted if not out and out generated to support a political agenda or some commercial outfit. So to heck with the supposed vanguard who have labeled this "Generation {wh}Y." It is hard to really care about what is going on in our nation or world at large when it is all as simulated as a Pixar movie or as contrived as a reality program.
There you go. That's my rant for this afternoon.

Here are my findings from all my research:

*everything is President Bush's fault. Even when there is compelling evidence to the contrary, everything is still his fault. My current back injury...oh you better believe it.

*Michael Jackson has completed his transformation via plastic surgery and is actually a woman.

*Senator Kennedy is far more heinous of a politician than I ever thought possible. I won't speak to his personage, since I don't know him, but....oh my gosh! How can Massachusetts be home to all those great centers of learning and letters and continue to vote that vile man into office?

*Alito is my new modern day hero. I may even have a crush on him.

*There are intelligent conservative rational and critical thinking people out there who don't just blindly follow the dogma that the party I align myself with gets such a muckracking for in the general press (And in my own mind, to be truthful. Apologies my bretheren).
Now I can finally purge myself of the feelings of inferiority that have plagued me since leaving the conservative, if not dangerously narrow, folds of home for the great big liberal world of Higher Education and the highly educated. I am excited to finally shake the notion off that to be a thinker and be credible, one must embrace Godless liberalism with no exception.
Wheww! Free at last, free at last!

So today's ramblings are really my way of saying "Thank you!" to Al Gore for making these revelations possible.
Vive la internet!

overheard: Kwanza

2006-01-22T18:52:00.000-06:00

Driving through downtown on Friday we passed a group of black people waiting to cross the street.

In the back seat Abby says to Emma Jean, "Those are Kwanza people. They celebrate Kwanza. Kwanza is not my favorite holiday."
"Abby, why do you say that?"
"Because we don't celebrate Kwanza, so it's not my favorite."
Then Emma Jean, always ready with her two cents had to throw in, "I don't celebrate Kwanza either."

I asked Abby what she even knows about Kwanza. She said that she heard it on TV at Aunt Susie's. Then she asked why we didn't celebrate Kwanza and I told her very simply that it is a holiday tradition that people who decendended from Africa celebrate, like Jewish people celebrate Hanukkah and Mexicans celebrate the Posadas. etc.

Then she asked, "Do the people who celebrate Kwanza get presents?"
"I don't know much about the holiday Abby. Sorry I can't be more helpful."
"Oh. That's alright honey. Everyone makes mistakes."
Then Emma Jean added for the sake of tradition, "We got our magnetix for Christmas last time.On the fourth day of Christmas."*

You can always count on Emma Jean for the random interjection. She just can't help herself. She is the reigning queen of the last word. Of course, she is the queen of everything.

Often lacking in orginal expression, yet somehow never at a loss for words. That's our girls!

And so we stand on cultural diversity in our little corner of dysfunction junction. Even Sesame Street can't whip them into the proper political correctness of the day.
Que lastima.

post script: I did think it was interesting that Abby made the association between Kwanza and black people. She is one of those "Can't see the forest for the trees" people, only it's more like she can't even see the trees for the branches and leaves and sometimes it's the tiny little weblike veins in the tree leaves that catch her eye.

*Don't ask. I am still sleuthing this one out. I am working on a theory though. Stay tuned.

consumer confidence remains high

2006-01-18T15:45:00.000-06:00

It was so nice. I want to go to school there! I hope they will get accepted more than ever after seeing the school and hearing the teachers and headmasters speak about the curriculum. It is a dream education, IMO. We spoke to a 5th-6th grade teacher and the first thing she said was that while her children had graduated from Trinity Christian, another local school and very highly regarded, if she could start over she would choose Covenant because of the excellence in character training and the parental involvement and Christ-centered teaching enviornment. I got teary during the presentation because the school is just everything that we want for the girls. Jimmy was totally sold afterwards too. He had been less certain and was bugging me about the school his nieces and nephews go to, which is fine and who knows? We may end up there, but it does not impress me at all. Anyway, I am going to an open campus there tomorrow to check it out during the school day. Two things that are super neat that they do there is on Thursdays, all the moms gather to pray for the students and the school and on Fridays, the dads gatheer at lunch with the kids and do the same. Isn't that cool? I went to excellent schools. I was very fortunate. I know that I was shaped into a lifetime learner in part because of my primary education. But, while my elementary school was terrific academically speaking, the character development was sorely lacking. It was called a "Christian school," but it was really just a superior education stamped with a prayer and that is not what we want for the girls. Rigor is not enough, KWIM?
We will find out sometime in early March. We have a family interview conducted in our home and some testing to do, yet. I will schedule those by next week, with any luck. I am excited. I will be pretty disappointed if this doesn't work out. It is a super neat place. I know it sounds an awful lot like, "It was an honor to even have been considered," but it really is amazing that this school is even on our radar. When Abby was dx'd in '03, my hopes of them having comparable learning opportunities to the ones that I had growing up were something I counted as lost. Even if they don't get in, there is victory to be claimed in the very possibility, KWIM?
Thanks for the prayers. I was so much less anxious; I know it is because ya'll interceded on my behalf.
I say to myself, “The LORD is my portion; therefore I will wait for him.” The LORD is good to those whose hope is in him, to the one who seeks him; Lamentations 3:24-25

Open letter to A. Cohen (editorial response #12)

2006-01-14T10:49:00.000-06:00

Spoken like a person whose life has not been touched by the 'autism hysteria,'
Yet.
I can assure you that my children and the children I have been around as a result of the 'autism hysteria’ in our lives have far more going on than simply having different personality types. Simply being quirky doesn’t cripple an entire family’s ability to function and particpate in the world. I don’t know what kind of people you have been running around with who would be “eager” for an autism diagnosis, but I only know people who are eager to get out from under the autism umbrella. But what do I know? I am just an obsessed and hysterical parent.
Your response is remarkably uninformed and officious. Check out the DSMV IV and do some reading about the disorder (Autism is not a disease, as you mistated). Also, there are effective treatments and interventions for Autism Spectrum Disorders. No cure perhaps, at least in the traditional sense of the word, but remediation with early and intensive interventions is well documented. Because it is a disorder and not a disease, there is not a 'one size fits all' plan for recovery, but recovery does happen. It is happening around here everyday.
“Wise men speak because they have something to say; Fools because they have to say something.”
~Plato

Here is the editorial letter to which I am responding. I guess this ignorant person's missive is well-suited to the ignorant editorial that sparked it.

"Hand-in-hand with the hysteria over vaccines and autism, is the hysteria about autism itself. In my neck of the woods (Boston), it seems that any kid that talks late, is shy and/or is introspective gets labeled as having some disease on the “autism spectrum”, e.g., Asperger’s syndrome.
Autism is clearly a disease; but an autism “spectrum” has never been demonstrated (only hypothesized), and no effective treatments for either autism or the supposed “spectrum” have ever been demonstrated.
While it’s great that society recognizes that some children have different personalities, we’ve become obsessed with turning personality differences into pathologies. I expect that this eagerness to label kids as autistic is causing a great deal of the “explosion” in autism, and is causing uneccessary parental anguish and societal expense.
Comment by A. Cohen — January 13, 2006 @ 8:36 am"

And people wonder why I am forever pushing to raise awareness. This fool is exactly why.

"I love you more than germs...."

2006-01-13T05:13:00.000-06:00

After acting, well just not as Emma Jean as usual and then asking if she could take a nap(!), I felt Miss Beans' head and she felt really warm. So I took her temperature and sure enough 101.9! I was so surprised. She didn't appear to have any other symptoms. Anyway, I got her into some cozy jammies and was getting my bed ready for the patient when Abby began fussing over our sick sweetie. She went to hug Beans and I told her after that, no more hugs or kisses until Mommy said Emma Jean's temperature was normal. I reminded her that she didn't want to get sick and when someone has a fever, it means they have a germ. Now Abby has an unprecedented aversion to germs. Not because of anything we've done. I am pretty nonchalant about stuff like that. I am of the school of thought that too much anti-bacterial everything weakens the immune system. I mean I clean and we wash our hands a lot, but I am not a freak about germs like some folks. Like Abby for instance. Anyway, I can use this little predilection of hers to my advantage at times so I figured the germ warning about sister would keep Abby a mile away. But do you know what my sweet Bitty Bee said? She gave Emma Jean another hug and said, "Oh sister. That's alright. I love you more than germs."
I know that was Abby speak for 'I won't even let a germ come between us."
How sweet is that? Sister love. It just doesn't get any better than sister love.

the agony and the agony....

2006-01-12T08:44:00.000-06:00

Unlike the first year, when we were just trying to find a way to make life livable, for the past year all the ABA therapy, speech therapy, and social skills building opportunities we have been working on with the girls was persued in hopes of being able to enroll them in public school in '06 for kindergarten. With mom all set to help us, we even had our house on the market and were ready to move to the appropriate school district. In November, the people who have worked the most with the girls and in whom we trust to give us good guidance concurred (independently) that they would really be best served in a private school setting. I was disappointed. We hoped to rely on a public school from kinde-middle school so we could begin re-stocking the coffers because we are on the brink of ruin after shelling out so much dough to help them overcome their autism. Our thinking was that it was likely inevitable that there would come a time for them to need private school for high school and possibly middle school, when the social demands might compromise their ability to succeed academically. Plus, it just felt like a defeat after all our hard work not to really meet the goal we had set out upon. We have swallowed this minor diversion and have set about looking for the perfect little school for them and we found one. It is exactly the kind of school I would want them to attend, regardless of their differences: excellent academics, Biblical instruction, highly structured, etc., but the reason I really think it is perfect for who they are is that the curriculum and atmosphere of the school is very character-driven. The emphasis placed on developing the Fruits of the Spirit is equal to the emphasis on academics. The school has high expectations of its teachers, students, and the parents to reinforce a code of behavior that reflects Christ's teachings about love and what the character of a Christian should be. My girls especially need an atmosphere like that, each of them for slightly different reasons. Emma Jean is a real social bee. Inept as she may be, she desires interaction and thrives upon it. She is also an attention junkie. These two things can be great motivators but there are drawbacks too because of the way her Asperger's manifests. One way she wears her disorder is that because she is unsure of how to act a lot of the time yet is a quick study of the people around her, she will find someone who she sees as being successful with others and emulate them. Sounds harmless I realize, but she takes it to a whole other level. She virtually assumes their persona: mannerisms, accent, everything. It is kind of freaky to observe. I could always tell which therapist she had worked with by her accent and manner when she came home. If she had worked with one, she might have adopted a New York accent and because I was familiar with all their therapists at BI, I could recognize them in her gestures and how she played. It happens fast too. She only has to be exposed to a person for a short period of time. There was a boy who was really troubled that we overlapped OT and ST with and after being around him the first time for maybe 15 minutes in the waiting room it took days for me to undo the "Elijah (his name)" that she had latched onto. That's the real rub. It would be one thing if she was attracted to the most wonderful kid in the room, but because of her personality, sunny and a little rambunctious, and her need for attention, she is drawn to the rowdiest most outlandishly behaved kid in the room. We have to be very careful who she is around. We have to pick her peers and playdates with a great deal of care because disorderly playmates reap havoc and in a big way that inteferes with the neat child she truly is and undermines her behavioral progress. I'm sure ya'll can see what the implications could be if she were in a crowded classroom where order and good manners and kind-spiritedness were not required. It would be chaos for her externally and internally. She is very smart, her IQ is somewhere in the range of 'exceptionally gifted.' But we all know that it doesn't matter how smart someone is if they cannot get along or are removed from the classroom for disorderliness. To further complicate matters she is a perfectionist and seeks approval from her teachers, but because of her social deficits, she doesn't 'get' that what she is doing is not okay until well after the fact, and then she is crushed and it is difficult to get anything out of her afterwards. Unfortunately, again because of her social deficits, she really doesn't learn from her mistakes in judgement. Her impulsivity related to her ADHD makes it a tricky area to navigate. She has to learn from her mistakes and like everyone else, natural consequences make excellent teachers, but she needs a lot of patience and tenacity on the part of the adults who are monitoring the learning experience, if that makes sense. One good thing about her though, while it may take a lot more somewhat contrived and black and white circumstances for her to learn a social lesson, once learned her perfectionism kicks in and she doesn't seem to revist the once problematic area again. Now Abby, she is totally different, but also needs a very closely monitored enviornment. She would never be attracted to a rowdy kid getting into trouble. She is SO, totally rules governed that the last thing she would want to participate in is something that is 'wrong,' be it according to the rules of the classroom or her own, often arbitrary set of rules. That said, she is not as naturally sunny and likable. She is kind of a crumungeon. We joke that she is like a cranky little old man in a five year old girl's body. She likes to do well and she is smart too, well above average, thank goodness since autism is more often paired with MR than not. And she does well, most of the time. Until she suddenly doesn't. Then it is bad news. Her understanding of what makes the social world tick is more limited than Emma Jean's and her social interractions are unsuccessful a lot of the time. She is not always aware of it, which I think is a bit of a blessing sometimes. But she has keen sense of injustice and is very aware of when she is being excluded or made fun of, sometimes she perceives injustice where there has been none and she really gets mad or emotional and it is difficult and takes quite a bit of finessing to talk her down. Then she holds a grudge and that is no fun and not a personality trait that bodes well for her social future. Silliness is confusing to her as are a number of the ways that typical little kids act. Her language and prosody (manner of speak) can be stilted and hard to understand at times and her peer group is becoming aware of that and loses interest in interacting with someone who is unintelligble and whose manner is kind of stiff and unnatural. So Abby needs to be in a classroom where there truly is a zero-tolerance for bullying and the children are held to a high level of expectation when it comes to kindess and grace. I am crying now picturing recent interractions on the neighborhood playground. It is so hard to watch and there is little to nothing I can do even when I am there to compensate or help her navigate these social pitfalls where she is so plainly deficit. I can't bear to think of turning her loose in a schoolroom where kids can be cruel, unknowingly often times at this age. But I realize I have to, God it is so hard and heartbreaking. She doesn't always show that she is aware of these rejections, but she does have real feelings and falls apart, breaking down in tears because she "Doesn't have any friends and never will!" I am helpless because it impossible to teach her the understood and unspoken rules of kid-dom. We try, don't get me wrong. We are relentless in our social instruction, but it doesnt really seem to take. Again, this is all part of Autism Spectrum Disorders, possibly the most crippling part as they mature. Despite all these obstacles, my girls are really awesome little people. And it's not just parental bias that says so. Really! Everyone who has worked with them agrees that they are too smart, too high-functioning, and have too much to offer to be pigeon-holed by the labels of their disorders. For the most part, their dx's do not define who they are and don't interfere with them being typical and bright children. Unfortunately, there are ill-informed stereotypes of the disorders out there that tend to dominate how people think about people with ASD. Before I learned otherwise, if someone said, "autism" I thought of Rain Man or some made for TV movie I saw on Lifetime once with a kid humming and rocking in the corner, flailing about every once in awhile. And while yes, ASD does look like that on some people, it certainly doesn't look like that on my girls. In fact, if I didn't tell you about them and you met them and spent a short period of time with them, you would likely never think a thing was wrong with them, unless you are sensitive to spectrum disorders. But even when I was looking for preschools for them last year, I had so many doors closed in my face the minute the "A" word was spoken. "Good Christian folks" would deny us access to their little pre-school program because, "we are not eqipped to deal with special needs." It was a real eye-opening experience. I began to see why many parents decide not to reveal their children's dx.

Anyway, I realize this is very long. I am just trying to work it all out. The conundrum that I face is this:Do we tell them? It goes against every fiber in my body not to be forthcoming about their dx's. It feels dishonest. However, we have been advised by many other parents and even their therapists not to reveal the full nature of their disorder. To maybe offer speech delay and play up the twin factor since it is widely accepted that twins often have speech and language delays. I don't know. It feels really hypocritical to seek a school because of it's emphasis and accountability regarding matters of character and then not disclose fully a significant fact about my girls.To further complicate this decision, this perfect little school is very expensive. But I know that they are also very generous with finacial aid. When we apply for it, they will look at our records and naturally ask, "Why do you need this aid? If having your children attend a school like this is so important to you, why haven't you planned for it? Why don't you have any savings? Why are you in debt?" Explaining why would require us to reveal their dx's. How else can we tell them that getting the girls to the point that attending any kind of school has cost us everything and then some?I know this is terribly long-winded. I appreciate anyone who has managed to wade through this lengthy post. I am thankful that I had a place to type it all out and work through the mish-mash of thoughts and feelings I have on the matter. This is my first attempt to do so. Thank you for bearing with me. If anyone has any insights or thoughts or suggestions about what we should do, please share them and be frank. I have to submit the first part of the application process next week. We will attend an open house on Tuesday and if the first applications are accepted, then we will go to round two which will include interviews for all of us. The enrollment deadline for September 2006 is next month. I am so anxious. Any input will be very much appreciated.
And of course, prayer, prayer, prayer.

Thank you.

“but the worries of this life, the deceitfulness of wealth and the desires for other things come in and choke the word, making it unfruitful.” Mark 4:19-20 NIV

would you know it if you saw it?

2006-01-11T01:23:00.000-06:00

One of these children has autism. Can you tell which one?

My vent to anyone who ever said:

"all kids do that"

"they'll outgrow it."

"awwww. I miss that stage."

"they just need more dicipline"

"you're just too hard on them."

"spoiled. that's all there is to it."

"but they look normal."

"so what's their special gift?"

"it could be worse."

"God gives special kids to special people."

Quiet doesn't always mean "shy"

A tantrum doesn't always mean "naughty"

AUTISM

Would you know if you saw it?

Look out Carly Piper!

2006-01-10T14:11:00.000-06:00

Well Abby did great! There are three kids and two teachers, how ideal is that? She was beaming from ear to ear. Genuine delight like that is somewhat uncommon for Abby to express naturally. Jimmy and I were really happy to see that expression of unmitigated joy on her face. Thank you Lord.
There are some areas that could prove problematic for Abby. So even though I really didn't want to, I had to tell the teacher about her autism. She was very receptive though and did not seem put off or anything. We'll see how class two goes.
I am trying to stay positive. I mean Abby's participation was great and it will be a good fit for her, I just didn't want to bring up her disorder. It makes me nervous about trying to keep it on the down-low when we apply to schools.
All in all, our first forays into the non-theraputic world were succesful. YAY!
"For nothing is impossible with God." Luke 1:37

Nard would be proud

2006-01-09T12:41:00.000-06:00

Emma Jean did great in her first gymnastics class. She is really a natural. She was so awesome on the uneven bars. The teacher was about to show her what to do and boom! She had already executed it perfectly. She did really well about not talking constantly the first half, but kind of got side tracked at the end, LOL. We'll work on it. She was so cute. She always used her little Olympian finish at the end of each exercise. There were older girls practicing who were clearly serious gymnasts training at the same time. At one point they began practicing their tumbling and would run then do some stunts (double back flips, etc.). When they would finish and do the pose, Emma Jean just couldn't contain herself and would begin clapping and cheering like mad. She charmed those serious teenagers. It was something to see. She'll be running that place before too long. Thanks for the support and for asking about it. I am still smiling with pride.
Tomorrow is Abby's turn. She starts her swim lessons in the morning.
"But if anyone obeys his word, God's love is truly made complete in him." 1 John 2:5

let the games begin!

2006-01-07T15:36:00.000-06:00

Abby starts swim classes this week. I am so excited for her. She seems like a natural and I am hoping that once she learns the basics she'll really excel and enjoy swimming. I think it could be a terrific lifelong sport for her. In the short term, I know it has a tremendous and positive impact on her language and attention and I am looking forward to meeting some people outside of the therapy circuit, both for her and for me.
Emma Jean will also be starting a new activity: Gymnastics (or 'Nastix' according to her, LOL). She has taught herself how to do backflips on the trampoline already and on the ground she can do a pretty decent round off and even a front handspring! I was a 'Top of Texas Tumbler' when I was her age so it's in the genes. When I spoke to the gal who runs the program told me that Emma Jean could wear shorts for her first class just incase it turns out she doesn't like it. I had to laugh. Like it or not, Emma Jean is not about to go without the whole get-up. I am still hearing about a tumbling birthday party I took them to almost two years ago that they weren't suited up for appropriately. Who knew?
Anyway, I have the same hopes for Emma Jean in so far as meeting some new folks. Just another stride towards life among the Earth People.
Look out people, here we come!

Great Expectations 2006

2006-01-06T21:13:00.000-06:00

I am part of an autism elist that sends out daily scripture and prayer. It is awesome. I have been so blessed by this ministry. This came today. I am blown away by the relevance of this epistle. If you would like to participate in this elist, click on the link 'children of destiny.' I don't read the emails everyday, but I am seriously blessed every day that I do. His word has a way of doing that for His children. Praise Him!
--------------------------------
One evening not long ago, I was spending some time with my wonderful husband, Jack. That night I was weary and discouraged. After five years of dealing with the awful affects of autism, my vigor was waning. I was tired and low. In an effort to help revitalize my strength, Jack suggested that perhaps we needed to spend more time in prayer after the kids were in bed at night.

I burst into tears. “What more does God expect of me? I have no energy left at the end of the day after all I have to deal with! And now I have to spend what little time I have for myself doing one more thing?” I have to admit that my reaction shocked me as much as it shocked Jack. Without warning, up and out of me came truth of the depth of hopelessness that I had fallen into.

It became clear I had to go back to the Lord to allow Him to minister to me, if nothing else. How did it get this bad? I had become a living example of Proverbs 13:12, “hope deferred makes the heart sick.” My heart was sick and I had grown weary. In 2005 we had seen little progress with Nicholas, dealing with full-syndrome autism, and had come to the sad realization that our second son, Sam, was also dealing with significant developmental delays. I began expecting bad days – and I got them. The real question then became not “what does God expect of me?” but, “what do I expect of God?”

As I allowed the Lord to minister to me, I began to realize that the discouragement and hopelessness I was feeling was the result of my own self-pity. I had begun to focus more on the loss and pain I was suffering rather focusing on God’s future and His promises. The result was pessimism. I had lost sight of the love of God in my life and in the lives of my children. I had lost my expectation in God for a victorious future.

Then the Lord reminded of something else – future is synonymous with expectation. I went to the dictionary just to see if the terms were linked. I discovered that one definition of future is “an expected state.” And in one definition of expectation is “a confident belief or strong hope that a particular event will happen in the future.” There is no question that one coincides with the other.

God is able to move on our behalf when we expect Him to do so. It really is a simple matter of faith. Do we have faith in God or not? The answer to that question really does determine the path we will follow and what the future holds. It determines how much we will allow God to move on our behalf.

For me, I am determined to shake off the hopelessness and discouragement of this past year. I am choosing to awake each day and make a declaration of God’s goodness every day before the demands of the day overtake me. This is a great exercise for any Christian. The Psalms are full of wonderful declarations of God’s power and faithfulness in the midst of adversity. It may be good to read a passage aloud each morning – even if it’s only a few sentences. Some examples are:

• “But I call to God, and the LORD saves me. Evening, morning and noon I cry out in distress, and he hears my voice.” (Ps 55:16-17, NIV)

• “With God we will gain the victory, and he will trample down our enemies.” (Ps 60:12, NIV)

• “Proclaim the power of God, whose majesty is over Israel, whose power is in the skies.” (Ps 68:34, NIV)

• “Your ways, O God, are holy. What god is so great as our God? You are the God who performs miracles; you display your power among the peoples.” (Ps 77:13-14, NIV)

• “For the LORD God is a sun and shield; the LORD bestows favor and honor; no good thing does he withhold from those whose walk is blameless.” (Ps 84:11, NIV)

These are only a few passages from the Psalms. There are great statements of faith we can declare from both the Old and New Testaments.

This exercise is more than just making positive statements or wishful thinking. It is allowing hope in a mighty God who is able to do all He has said to begin to rise up within our hearts. It is declaring the truth, which will set us free. That in itself will bring a measure of healing to a sick heart.

But there’s more. As we truly grab hold of hope in God, it will transcend into faith. With our faith arising, God can then grab hold of our circumstance and cause us to overcome. And it is through faith that we will see demonstrations of God’s power. He has the power to heal, the power to deliver, the power to set us free. And, yes, He also has the desire to do so on our behalf. The only true way for us to tap into the power of God, not only for ourselves, but for our children, is to expect Him to move.

In 2006, Jack and I have determined that we will allow an expectation of God’s love and His power to determine our future. We will wake in the mornings declaring that we have God’s strength for today and hope for tomorrow. We will choose not to live “under the circumstances” of our lives, but we will catch a new wind of strength to soar above them. We will expect to have the joy of the Lord. We will expect to see good things for our children.

Does that mean nothing discouraging will happen in the coming year? No. But we can choose each and every day what our response will be. We can either walk in self-pity and doubt, or expect to see God’s hand move in our circumstances. We have determined that no matter what the year brings, we are going to believe in God’s faithfulness to us, we are going to expect to tap into His overcoming strength, and we are going to expect that He will move with power on our behalf. We are expecting a great year in 2006.

Take a moment as we begin this new year to allow a fresh hope in God’s great faithfulness to come on you. Read Psalm 66. And then answer the question for yourself: what is your expectation of 2006?

May the Lord richly bless you in this coming year,
Jack and Rebecca Sytsema

table for four, please!

2006-01-05T21:50:00.000-06:00

We have dined as a family twice this week and what an absolute pleasure it has been. Abby struggles some, but Emma Jean is obviously delighted with this turn of events. And so am I! Jimmy said how sweet it is to look around the table and enjoy a meal and 'conversation' as a family. He and I have both misted up while sneaking a peek at the precious ring around our humble table during grace. It was so far out of reach not too long ago.
Oh, I am so happy! PTL!

"You can't change circumstances and you can't change other people,
But God can change you."
~Evelyn A Thiessen

thought for the day..well maybe just for the hour, okay a couple of minutes anyway:

2006-01-04T09:29:00.000-06:00

Have you tried Panexa for that?

my little know it all

2006-01-03T21:59:00.000-06:00

So this morning I was sitting in my chair working on my Bible study and Abby wanted to know what a certain part of the study material said. It was the recap, but I explained it as a summary saying that it took all the material that I read on the previous pages and condensed it. From way across the house in the dining room Emma Jean, who was coloring and not at all involved with anything either Abby or I were doing in the living room, pipes up, with great authority of course, "No, that's not right. A summary is a ship that goes under water to look at things and uses a parrot to look at what is on top of the water while it's down there."
Oh this child! She asks me how to spell a word then argues with me about the spelling.

And people wonder why I am crazy.
__________________

You crown the year with a bountiful harvest; even the hard pathways overflow with abundance. Psalm 65:11

Glory to God in the Highest Heaven!

2006-01-01T11:37:00.000-06:00

Happy New Year!

Glory to God in highest heaven,
Who unto man His Son hath given;
While angels sing with tender mirth,
A glad new year to all the earth.
~Martin Luther

Johnny Knoxville...who knew?

2005-12-29T22:44:00.000-06:00

Johnny Knoxville...who knew?

Please go see this film.
Laugh with us not at us.
The Ringer

Celebrate good times!

2005-12-29T19:31:00.000-06:00

My girls are eating French cut green beans!
Why is this something to celebrate? Because they usually eat regular cut green beans. Still, why celebrate you may ask? Because my girls not only eat just a few items, but those few have to be the same, every time. It was just six months ago that if a perfectly acceptable dinner were placed before them but the chicken was not exactly at 6 o'clock, the rice at 9 o'clock, etc. then it would not do. And just rotating the plate was not sufficient. I had to replate the whole thing and start over. And no more than a year ago, no one in this house even had the language to tell me what the problem was so they just screamed. And screamed and screamed and screamed. Leaving Jimmy and I little choice but to scurry about hoping to to hit on the the thing that was the problem. Sometimes succeeding and sometimes failing. It was so stressful and frustrating and sad.
But not anymore.
Tonight they ate French cut beans!
Tonight we celebrate!

__________________
Yet to all who received him, to those who believed in his name, he gave the right to become children of God.
John 1:12 NIV

yeah, yeah, yeah....

2005-12-26T22:01:00.000-06:00

I know I have said this before, but I am not generally a sadsack. However, the timing of my starting this blog has coincided with a sort of crash and burn of my 'Super Autism Mom' identity. I hate it. I want to be an energizer bunny. I was so good at it for almost two years that I was fairly convinced that I was. But, the last few months have proven otherwise. I am a mess. I hate it, but it's true. No one in my real life (or what passes as such) knows what to do with me now. I am figuring out that no matter what they say/said, they liked me nice and tenacious (from a saefe distance). Tenacious and "Go get 'em tiger"
'Susan your fire and passion is beyond reason, burgeoning on obsession.'
Yup, they loved to point that out, but since my crash, I believe they are rethinking their rush to warn and console, KWIM?
I don't entirely blame them. I was able to keep it up for so long that they have been thoroughly duped and my recent discovery of what a charade it has all been just seems to confuse and irritate those who 'love' me.
Arrghghhghgh.
I realize that the difficulties my girls face are ulitmately their cross(es) to bear, but right now it feels like mine and mine alone. Suddenly dh wants to get involved and while that is so great, and I really mean that)it is GREAT. But there is a part of me that wants to say, 'Oh YEAH? Where were you when it was hard? Really, really hard? Nice of you to step up now that they are managable. Now that I have read tens of thousands of pages of literature and spent thousands of hours in meetings and therapy sessions, it is so great that you are suddenly ready to read the fu***** Cripps notes and not only think you are an expert in handling them, but also in handling me!'
OMgosh! I just went off. I am so sorry. I should probably stick it up my astricks.

Oops.

really not alone?

2005-12-26T21:37:00.000-06:00

Quote:
My first child—a baby girl—arrived.We named her Kathryn. Everyone was excited and looking toward the future.The months went by, and people would ask, “Has she said any words yet?” “Is she walking?” “Well no, not yet,” I would reply. The years went by. On some days when we would go to the playground, I found my mind wandering as I watched my child play so happily—alone—whilethe other children laughed and played tag. Did their parents know how lucky they were? My two-yearold was not yet able to walk, or use the slide on her own. Those other parents probably never waited for inconclusive results, I thought, or sat through therapy sessions and evaluations. They’ve likelybeen at the zoo or visiting and laughing with friends. Did they know the miracle of having a child born normal? I watched my daughter, and I also questioned my state of mind. Maybe I worried too much, maybe she was just slow in developing. Friends were telling me not to worry,so maybe what I was feeling was simple envy. I experienced all of these emotionswhen I should have been enjoying the day with my child.Many friends and family offered advice and support, assuring me that Kathrynlooked fine and that I worried too much. They didn’t really understandwhat I lived through each day, and so sometimes they attempted to comfortme by pointing out how lots of kids do that. But do lots of kids hate hugs? Do lots of kids prefer to play by themselves?Do lots of kids cry because the “words arestuck” in their heads and they can’t get animportant message across? Do the phonesof those other parents stay silent becauseno friends were clamoring for play dateswith their children?Sometimes the doctors thought that they knew what was wrong and would render a diagnosis. But the diagnoses didn’t truly fit all of the symptoms I saw in my child. Then one day the years of testing, examinations, and observations came together and someone said, “I think your child has an autistic spectrum disorder.”“YES!!!” I said as I read and researchedthis disorder called Asperger’s. I wept as I read, seeing Kathryn on every page, in every description. At long last, after all of those years as her mother, I felt that I could finally get to know my own child!Imagine the joy! I tell this story to as many people as will listen. Some think it strange that a mother would be so happy about a diagnosis of an autistic spectrum disorder. That is because they do not understand that the diagnosis has opened the curtains on my daughter’s world. In addition, it wasa relief to find out that I was neither an over-protective, nor an ineffective parent. Indeed, there was something wrong that I could now address!Some friends and family are curious and want to know what caused it, and how do you fix it? To me, it doesn’t matter what caused it or what name they give it. Kathryn has it. But although she was born with it, Asperger’s doesn’t define who she is. It does, however, provide a guide to helping me understand her world.After the diagnosis, my focus became that of helping Kathryn cope in a world that seemed confusing to her—to show her the joy in a joke; to help her understand that “skipping school” doesn’t require a skipping rope; to teach her how to converse with others; to give her visual clues in an auditory world; and to respect her wishes by asking her if it’s okay to hug her. There are so many things that have to be done, that I don’t have time to question why Asperger’s entered our lives. I leave that question to the researchers, and enjoy the remarkable gift of my child with Asperger’s.At the playground, I am no longer selfabsorbed, no longer jealous of the othermothers with “normal” children. Rather, I am happy inside as I accept and embrace this wonderful child who enjoys the details of life, and thinks of things that others never dream of. I have a different attitude now. I think it’s too bad that those other mothers may never know the gift of a child who is different.Sure there are days when I am frustrated and don’t handle motherhood all that well, for the parenting of a child with Asperger’s is a daily challenge. But surely there are days when all mothers don’t handle motherhood very well! Some people have offered condolences about the diagnosis, while others are merely dismissive saying “It could be worse” or “How can it be autism, she looks so normal?”For my part, I think of how brilliant I will be after a lifetime of explaining idioms dead last (Did he really die?); skipping school (I didn’t bring my rope!);tickled pink (Who’s tickling you?); getting cold feet (Why don’t you put socks on?); getting up on the wrong side of the bed (But my bed is against the wall); and the list goes on!With all of this in mind, and with the perspective of time, here’s what I’d like to say to all the other mothers like me:Cry when you need to, and reach out for support whenever you can. Know that it is okay to grieve initially—to feel frustrated and alone. Acknowledging those feelings will allow you to deal with them. Read about autism, and try to meet other families who are raising children with autistic spectrum disorders. Learn the strategies that work for you and your child. Most of all, realize that you are never alone. Somewhere out there— today—another mother has heard the diagnosis of autism and needs to hear from you that it will be okay!Perhaps this analogy will work for you as it has for me. Think of your child with autism as a butterfly-in-the-making, who must first go through the difficult caterpillar phase. Slow to learn the ways of the world, traveling alone, and so easily missed in a fast paced world, he or she turns inward—a cocoon of sorts—because he or she lacks the understanding and skills for the next step in life. Other children—those without autism—are like birds whoreadily develop and change as they move toward independence—spreading their wings, making friends and exploring.The child with autism, however, needs the right intervention, environment, and support to break free of the “cocoon.” If you are lucky enough to watch a butterfly hatch, you will understand the task before your child. Watch how hard and long a butterfly works to split the cocoon that has kept it safe. When first it spreads its fragile wings and alights on a leaf to dry, it must feel so different from howit did in the safety and sameness of the cocoon. Like the butterfly, the child with an autistic spectrum disorder must also learn a new way of existing. This process cannot be rushed. Remember that the butterfly can be fragile. If you rip it from its cocoon, try to make it fly too soon, or keep it in a cage, you may never see its potential to fly free, high, and far.Children with autism fly like butterflies too—up, down, here, there and everywhere. They may lack the easy grace of butterflies and birds, but they do get to where they want to go.

Hang in there, it’s worth it.

Love from Kathryn’s mother.

__________________
Passed on to you with love from Abby and Emma Jean's mother.
__________________
'I have given you authority to trample on snakes and scorpions and to overcome all the power of the enemy; nothing will harm you.'Luke 10:19

I do not think Emma Jean slept last night...

2005-12-25T11:57:00.000-06:00

Maybe from 8pm-12am or so. She was out of bed having a totally awesome Christmas fit at 4:11 this morning. She was so jazzed there was no way I could send her back to bed. It was so funny. Of course Abby, ever the voice of reason was telling her, 'It's not Christmas until mommy and daddy get up sister.'
Emma Jean said, 'But Abby, I am telling you Santa was here. The cookies are gone and there are presents everywhere!'
'Not until mommy and daddy say so sister.'
'Listen sister, I am serious. Something has happened here and I think it is really Christmas!'
By then I was about to bust so we started the whole,'Huh? What is going on?'
Emma Jean came running in shrieking with delight, 'Mommy! Daddy! It is really Jesus' birthday today! There are presents everywhere and the cookies are gone!'
Abby, still in bed (not even Christmas dare interfere with the rules) cried out, 'I told her it was not Christmas til you and daddy said so. So...be you say it?
It was a great morning. Truely the best we've ever had. Jimmy is on the mend, the girls were beside themselves and it was just such a miracle to be a part of, I didn't know if we'd ever have a Christmas morning like this, I really didn't. Praise God.
Happy birthday Jesus!

feats of strength

2005-12-20T11:53:00.000-06:00

Today we turned a corner, my family that is. And unexpectedly, I have found myself quite emotional. It is the girls' fifth birthday today. I still can't quite believe that. Anyway, to 'celebrate' I took them to McDonald's for breakfast. We rarely eat fast food because their diet is so restricted, but today I threw caution to the wind. We stopped at one on our way to take Emma Jean to Behavioral Innovations, the treatment center she's been attending for a year and that Abby attended for the year before that. The girls were delighted and gleefully discussing their food and McDonald's in general and admonishing me to learn how to make square eggs as we turned onto the street that has held our home away from home for two years now. Suddenly, it was like a slide show of the past two years began to play before my eyes and I found myself overcome with memories ranging from the first time I went to check the place out for Abby and the first time I dropped my silent terrified child off for eight hours to the immeasurable joy of her first accomplishments. Then the defeat of the beleaguerd realization that it was Emma Jean's turn. My God, we have seen so much, learned so much, accomplished so much, and overcome so much. I am proud of the girls. I am proud of my husband and the sacrifices we've made to make this day possible. Most of all I am humbled in gratitude and thanks, and wordless with indescribable joy in my Lord. I can't believe we are finished after today, really finished. There is still loads of work to be done of course and mountains to climb, but this chapter of their story is finished.

'Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,”
says the LORD, who has compassion on you.'
Isaiah 54:10

a holiday 'ha-ha' from Literal Land

2005-12-14T20:22:00.000-06:00

'Tis the season..' or so the earth people say...Those of us who live in the parallel universe know that while yes it 'tis the season,' that statement is totally open ended. Tis the season for what? Fun? Excitememt? Hellish tantrums? Disruption? Acceptence?Pressure? Condemnation ? Repeated explanation? I will offer my first (of what will likely be one of many) example of how the holidays are celebrated differently on the spectrum....First of all, after much deliberation we decided not to mess around with the "Santa" game. Not for religious, moral, or otherwise reasons. Abby and her absolutism has governed this decision. Intrinsically, I have known that pretending Santa was real could prove problematic for Abby's tenuous peace of mind. And I was right. It really bothered her beyond reason that someone might:
A) come into our home via the chimney and
B) eat our food.
So we have taken the tact of 'Santa, etc.' is a fun game and holiday tradition that people play to celebrate Christmas. *blah, blah, blah*All was well, or so I thought until Thursday. Driving home from BI, somewhat contentedly listening to Christmas music Abby suddenly asks, "What is Santa's last name?"
"Claus," I answer merrily. (Who wouldn't?)
A freak out to match no other recently measured ensued. Unintelligible at first. All I could make out was panicked shrieking from the back seat. Finally, the source of hers, and thusly Emma Jean's ..(never one to miss out on a drama-rama) fear is unearthed:

"Santa has claws?
CLAWS?
SANTA CLAWS???!??!?!?!"

What am I supposed to do with that? She was not quieted in the least by my emphatic "No's!" She argued that this explains the gloves.
We attended the Neimen Marcus Children's Christmas Parade the following Saturday. I spent the better part of the procession pointing out all the Santa's that passed by had nice hands. I even convinced a few to wiggle their fingers in a friendly way in our direction. To date, Abby is reserving judgement. I guess I can go ahead and put "Take the girls to see Santa at North Park" in the 'We'll try it next year" column.
__________________

'I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better.'~Ephesians 1:17

Snipples

2005-12-14T08:58:00.000-06:00

Emma Jean has been coughing around since the weather turned and now Abby is coughing too. She never gets sick. She is a horrible patient too.
Anyway, she just came in here and said the cutest thing. She said, 'I need my juice I left in here. I got the snipples. It's snipples I got mommy.'
Snipples?

we found the answer to all of our financial difficulties...

2005-12-01T06:13:00.000-06:00

Do you think we could sell this eggplant slice on eBay? I mean it isn't Elvis on a grilled cheese sandwich, but it has to be worth something to someone, right?

Open letter to Matte Jet Ink Photo Paper

2005-11-30T23:27:00.000-06:00

Dear Matte,
You know how attractive I find you. You wooed me from the glossy side of life years ago. So clean. So tasteful. Almost retro, but with a hip-edgy look. I don't think I could ever go back to the flashier, shiny gloss or even semi-gloss I had been involved with before meeting you.
But you vex me so! Would it be too much to ask for you to put some kind of marking or pattern on your backside? It's true there are many other photo paper products that don't, but don't you see Matte? They don't have to because their finish gives them away. I am not asking for anything showy or glitzy. I promise. I never would want you to compromise what you stand for. So what do you think?
No?
Not even a little tone-on-tone watermark or insignia? It would hardly be noticable. No really Matte! Who would know?
Oh you would know and that's enough. Puh-lease. What? Do you think you'd lose the 'artsy' market? I really don't think that should color your decision. Only poseur art-photographer types would dare complain.
There is something you must know then; and I hate to be the one to tell you this Matte. And I really hope it won't hurt your feelings, but it needs to be said: The true purists do not use Jet Ink Printers for their photos. No. They do not. And they never will. Oh I've done my research. Never.
Listen, just think it over and maybe get back to me. I won't leave you yet, I love you Matte, but this two-facedness, is wrong. It is misleading and it is putting a real strain on our relationship. Mull it over. Don't be a hater.
Weary but hopeful,
Desperate in Dallas

Another quote

2005-11-25T23:09:00.000-06:00

What can I say? It amuses me...
"Geese are friends to no one, they badmouth everybody and everything. But they are companionable once you get used to their ingratitude and false accusations."
E. B. White

The History of Thanksgiving

2005-11-24T09:23:00.000-06:00

The History of Thanksgiving
By Gary North

Thanksgiving Day is an old tradition in the United States. It had its origins in Plymouth Colony, in the fall of 1621, when the Pilgrims who had survived the first year invited Chief Massasoit to a feast. He showed up with 90 braves and five deer. The feast lasted three days.

The first official Thanksgiving Day was celebrated on June 29, 1676, in Charlestown, Massachusetts, across the Charles River from Boston. Over a century later, George Washington proclaimed a day of Thanksgiving on October 23, 1789, to be celebrated on Thursday, November 27. In 1863, Abraham Lincoln officially restored it as a wartime measure. The holiday then became an American tradition.

Lincoln was a strange contradiction religiously. He was a religious skeptic, yet he invoked the rhetoric of the King James Bible on many occasions. His political rhetoric, which had been deeply influenced by his reading of the King James, was often masterful.

For example, when he spoke of the cemetery of the Gettysburg battlefield as "this hallowed ground," using the King James word for holy, as in "hallowed be thy name," he was seeking to infuse the battle of Gettysburg with sacred meaning, a use of religious terminology that was as morally abhorrent as it was rhetorically successful. It is the sacraments that are sacred, not monuments to man's bloody destructiveness. In that same year of 1863, he used biblical themes in his October 3 Thanksgiving Day proclamation.

It is the duty of nations as well as of men to own their dependence upon the overruling power of God; to confess their sins and transgressions in humble sorrow, yet with assured hope that genuine repentance will lead to mercy and pardon; and to recognize the sublime truth, announced in the Holy Scriptures and proven by all history, that those nations are blessed whose God is the Lord.

He went on, in the tradition of a Puritan Jeremiad sermon, to attribute the calamity of the Civil War to the nation's sins, conveniently ignoring the biggest contributing sin of all in the coming of that war: his own steadfast determination to collect the national tariff in Southern ports.

In his proclamation, he made an important and accurate theological point.

We have been the recipients of the choicest bounties of heaven; we have been preserved these many years in peace and prosperity; we have grown in numbers, wealth and power as no other nation has ever grown.

But we have forgotten God. We have forgotten the gracious hand, which preserved us in peace and multiplied and enriched and strengthened us, and we have vainly imagined, in the deceitfulness of our hearts, that all these blessings were produced by some superior wisdom and virtue of our own. Intoxicated with unbroken success, we have become too self-sufficient to feel the necessity of redeeming and preserving grace, too proud to pray to the God that made us.

This observation leads to the same question that Moses raised long before Lincoln's proclamation: Why is it that men become less thankful as their blessings increase?

Less than a decade after Lincoln's proclamation, three economists came up with the theoretical insight that provides an answer.

Marginal Utility Theory

In the early 1870s, Karl Menger, William Stanley Jevons and Leon Walras simultaneously and independently discovered the principle of marginal utility. Their discovery transformed economic analysis.

They observed that value, like beauty, is subjectively determined. Value is imputed a familiar Calvinist theological concept to scarce resources by the acting individual. Other things remaining equal, including tastes, the individual imputes less value to each additional unit of any good that he receives as income. This is the principle of marginal utility.

This can be put another way. We can say that each additional unit of any resource that a person receives as income satisfies a value that is lower on that individual's subjective scale of value. He satisfied the next-higher value with the previous unit of income.

This provides a preliminary solution to the original question. I call this solution the declining marginal utility of thankfulness. People look at the value of what they have just received as income, and they are less impressed than they were with the previous unit of income. They focus on the immediate, "What have you done for me lately?" rather than the aggregate level of their existing capital. They conclude, "What's past is past; what matters most is whatever comes next."

Modern economic theory discounts the past to zero. The past is gone; it is not a matter of human action. Whatever you spent to achieve your present condition in life is no longer a matter of human action. The economist calls this lost world "sunk costs."

There is a major problem in thinking this way. It is the problem of saying "thank you." The child is taught to say "thank you." He is not told to do this because, by saying "thank you," he is more likely to get another gift in the future. He is taught to say "thank you" as a matter of politeness.

The problem is, we look to the present, not to the past. We look at the marginal unit of economic decision-making and not at the aggregate that we have accumulated. We assume that whatever we already possess is well merited. Then we focus our attention on that next, hoped-for amount of income.

As economic actors, we should recognize that the reason why we are allocating our latest unit of income to a satisfaction that is lower on our value scale is because we already possess so much. We are awash in wealth. We are the beneficiaries of a social order based on private ownership and free exchange, a social order that has made middle-class people rich beyond the wildest dreams of kings a century and a half ago. Or, as P. J. O'Rourke has observed, "When you think of the good old days, think one word: dentistry."

About half of the Pilgrims who arrived in Plymouth in 1620 were dead a year later. The Indians saved the colony by showing the first winter's survivors what to plant and how to plant it in the spring of 1621. The Pilgrims rejoice at that festival. They would say that they were graced and happy to be alive.

Ludwig von Mises wrote somewhere that Charles Darwin was wrong. The principle of the survival of the fittest does not apply to the free market social order. The free market's division of labor has enabled millions of people to survive today, who would otherwise have perished.

So, give thanks to God tomorrow, even if your only God is the free market. You did not obtain all that you possess all by yourself. The might of your hands did not secure it for you. A little humility is in order on this one day of the year.

trying something crazy today with Abby...

2005-11-24T06:22:00.000-06:00

Styling her hair. Both of my girls really despise the hair dryer (as well as those hand dryers in public restrooms, leaf blowers, etc. ). I recently splurged on a new hairdryer with a diffuser to see if that would help, but all Abby had to say about that is, 'I don't like it with the confuser either. I still don't like it.' Ugh. Anyway, there here has always been such drama associated with hairdrying that I have never even tried to do anything as radical as curl their hair. That is quiet of course, but they are so torqued after the hair drying that when they have even seen a stying tool they freak out. But, today I am going to be brave and try to use a curling brush on Abby's hair. We want to take a few pictures of the girls while we are at my SIL's today and I'd really like for Abby's hair to look nice.Wish me luck!

Quote for the day...

2005-11-24T01:03:00.000-06:00

"True happiness, we are told, consists in getting out of one's self, but the point is not only to get out—you must stay out; and to stay out you must have some absorbing errand."
~Henry James

Say it Loud, Autistic and Proud

2005-11-22T18:42:00.000-06:00

For many, it's a condition which evokes pity and even fear. But a campaigning group of activists is determined to change the way we view autism by dealing not with its many downsides, but by focusing on its positives.
The stark black-and-white photograph shows a large, ungainly young woman with a shaven head, wearing shorts and a T-shirt and sitting cross-legged on the floor. Her face is hidden. 'The young woman in this picture has autism,' reads the text beside it, 'a debilitating developmental disorder that affects communication, socialisation and behaviour.' The next photo shows the helmet she has to use to stop her damaging her head when she bangs it on the wall, her adult-sized nappies and the picture board she has to use, because she can't speak. 'Sometimes she screams, and nobody knows what she's thinking,' explains the text, 'but she's clearly frustrated about her communication disorder.' More pictures show her lying on the floor staring at blocks of wood or sitting in a chair, unresponsive. 'If she had a voice, we wonder ... What is she thinking? What would she say?' These are pictures designed to trigger pity and maybe a guilty twinge of revulsion; they might even move you to make a donation. But you've been suckered. They form the opening pages of an angry radical website designed to challenge familiar stereotypes. They are a knowing and brutal parody of campaigns to raise money to find a cure for a 'terrible disorder'.
They are part of a grassroots revolution by a new breed of autism activists who identify with other once-marginalised sections of society like black people and homosexuals, engaged in the same sort of struggle to establish basic rights and to outlaw discrimination. The first Autistic Pride Day march took place in America this summer and the organisers declared their intention was to 'promote the concept that those identified as autistic are not suffering from a pathological disease any more than those with dark skin are suffering from a form of skin disease'.
This point about the integrity and validity of the autistic state is also hammered home on www.gettingthetruthout.org. After the initial pitiful images, we see the same woman wearing a different T-shirt. It reads: 'Not being able to speak is not the same as having nothing to say.' She may not be able to speak, but she is fiercely articulate at the keyboard as she lucidly denounces the way autistic people are belittled in the name of 'helping' them: 'I will not have my life medicalised this way so you can fund the elimination of autistic people from the planet.' There are more than 500,000 people believed to have some (often undiagnosed) degree of autism in this country, and if the radicals are right we could be treating them in completely the wrong way. If this is the case, there are some major implications for many of our assumptions about education, brain sciences and psychology. Last summer, to pick up some clues about what the autistic pride movement wanted and what it might have to teach us, I went to the strongest manifestation of this new consciousness yet to emerge in the UK.
Called Autscape, it was the first conference in Britain organised by and for people with autism, a process described by the organisers as 'like herding cats'. The media stereotypes I carried with me were three: the once-cuddly toddler now screaming and unreachable, lost to his distraught parents; Dustin Hoffman's incompetent but endearing genius calculator in Rainman; and the shamelessly inquisitive, literal-minded adolescent in Mark Haddon's The Curious Incident of the Dog in the Night-time.
None of them prepared me for the real world of autism; immediately I was struck by the badges they all wore. In place of the impersonal, minimally revealing badges of 'normal' conferences, these were raw shouts from the heart. There were three options. Red meant: 'Do not approach me. I do not wish to socialise with anyone.' Yellow said: 'Do not approach unless I have already told you that you may approach me while I am wearing a yellow badge.' Green declared: 'I would like to socialise, but I have difficulty in initiating. Please feel free to approach.' My first response was: what a brilliant idea. Who hasn't wished for something similar at a party social occasion? 'I really don't feel like talking this evening unless you are a Bob Dylan fan/ Chelsea supporter.' But, more than that, they immediately challenged one of the most pervasive myths: that autistic people lack a 'theory of mind', that they have no sense that other people have an interior world. While non-autistic people can predict social behaviour by imagining what is going on in other people's minds, so the theory goes, those with autism behave as if other people are machines with no inner world. It's this that makes their social skills so poor. But which shows more awareness of others: 'Mark Tucker: Marketing' or 'Do not approach me'? Shortly afterwards, an even more firmly rooted assumption took a good hammering. Jim Sinclair is one of several legendary American activists, the founder of Autism Network International, and he has been organising a similar event, Autreat, in the States for nearly a decade. He is diagnosed as autistic and uses a wheelchair, however his clarity and intensity makes him a commanding figure. He tackles the hugely sensitive issue of the emotions of parents whose child has been diagnosed with autism. Few of us 'normals' could do anything else but mutter inarticulate sounds of consolation. But in discussing it, Jim is far clearer - and sterner.
'These parents are grieving, but this grief does not stem from the child's autism,' he pronounces. 'It is a grief over the loss of the normal child the parents had hoped and expected to have. But this grief over a fantasised normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult care-takers and who can form very meaningful relationships with those care-takers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both parents and the child.' It is a point vividly made on www.gettingthetruthout.org. 'I began to know that my future lay in an institution,' writes an anonymous author. 'Or maybe on the streets. Or dead. Because that's what everyone around me believed would happen if I wasn't cured. I reacted to this knowledge the way a lot of people do. I began my reign of terror. Other people's response was to increase the restrictions on my life until I spent most of my time tied down and isolated from not only the outside world but the rest of the institution, too.' This is not a picture of someone cut off, unable to respond to the words and actions of others - rather she picked up their messages all too clearly. It's the sense of not being valued, not being respected for who you are, that gets to the heart of the radicals'
complaint.

full article here

Wrongful life suit? 'I wish my daughter had never been born.'

2005-11-19T16:59:00.000-06:00

When is it wrong to be born? That is a question facing an Australian court. A mother, Olga Harriton, says if she would have known that her daughter would have the birth defects she was born with, she would have aborted her. Alexia Harriton, 24, is blind, deaf, and has mental retardation as a result of her mother's contracting rubella during the first trimester of her pregnancy for Alexia. Exposure to rubella during prgnancy, by the way, can lead to autism. Alexia is suing to the doctor who misdiagnosed her mother's rubella for "a lifetime of suffering" in Australia's "wrongful life" suit. "Lawyers for the Sydney woman argued in Australia's highest court Thursday that Dr. Paul Stephens is liable for the costs arising from a lifetime of medical treatment that Harriton needs to survive." To read the entire story, see the Court TV article.

I can understand regretting a child's disabilities and wishing it were not so and even imagining how life would be better if the child did not have the disabilities. But to wish that the child had never been born, is quite another matter. In my darkest moments, perhaps this thought has crossed my mind. I can not imagine life without these girls of mine, exactly how they are. This "mother" would prefer no child to the child she has! I am sure she has suffered (which one of ya'll has not suffered?) but life is sometimes very hard. What do ya'll think?

pray for this family please

2005-11-18T19:52:00.000-06:00

The folks I brought a meal to tonight, the Kalbs. A friend of a family in our church who recently lost their college age son (their only child) in a car accident. They just returned with his body and they are preparing for his funeral. It was the saddest scene I've ever happened onto. This family actually does not attend our church, I don't know if they attend anywhere. The woman (mother) is partner in a law firm that one of our congragants is partner in and so that's how the 'Hugs and Quiches' ministry got involved. I have dropped off a meal to many families in similar situations over the past four years and never once has what happend tonight happened before. When I went to leave the mother just fell on me in her grief, weeping. 'He was my only baby. My only baby.' Here she was surrounded by eight maybe ten people who knew her and her son and she was so bereft that she literally fell on a total stranger, just weeping. It was surreal. I could see his 1980's looking baby book open on the coffee table behind me as I held her up while she sobbed.
Heart breaking stuff, this.

'When I'm old...

2005-11-16T18:54:00.000-06:00

...will you still kiss me and sing me lullabies?'

That's what Abby asked me yesterday.

something cute Emma Jean said...

2005-11-15T14:49:00.000-06:00

While I was getting dinner and vitamins together this evening, Jimmy and the girls were outside planting pansies. Emma Jean had gotten sidetracked and was filling little pots with top soil and dirt to build a sand castle. The way she was doing it was way harder than it had to be (that's the way we do everything around here..the hard way...LOL). Anyway, at one point Jimmy saw her struggle and he topped off her pot with some dirt. She looked up at him and said, 'Oh thanks daddy! You know sometimes? When you help a little kid? It makes them real happy.'
How sweet is that? And it was an original sentence, unprompted and everything! Jimmy was so touched.

__________________
'Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the LORD, who has compassion on you.'
Isaiah 54:10

Tom Robbins' quote:

2005-11-14T22:26:00.000-06:00

"Philosophers have argued for centuries about how many angels can dance on the head of a pin, but materialists have always known it depends on whether they are jitterbugging or dancing cheek to cheek."
~Tom Robbins

stupid human tricks

2005-11-11T13:31:00.000-06:00

I don't know about ya'll, but I was on autopilot those first few weeks post-partum. They girls were my first experience of infants and I was frenzied: nursing round the clock, trying to keep our tiny jumbled aprtment from imploding, getting adjusted, and of course very little sleep. Then there are all the joys of just having delivered my first babies. No tears, no surgery, but I was SORE and I developed an unrelentling rash on my tummy and upper thighs that we later learned was an allergy to oxytocin.. The itching was terrible and I often had to get up in the night after nursing the girls and retrieve an icepack for relief. I would wrap it in a thin cup towel and place it on my stomach and try to catch a few winks. Anyway, one morning following another itchy night, I was bustling around the bedroom and I kept noticing this smell. It wasn't a bad smell, in fact it smelled kind of good, but it wasn't a baby smell either. Even though the aroma persisted, I couldn't figure out what it was and I just dismissed it and went about my morning. Early afternoon, I finally got around to making our bed. As I snapped the sheets tight and fluffed the comforter I smelled the mysterious smell once more. Again, I checked the girls, the diaper pail (yes we used cloth ) the oven, the trash, nothing explained it. I went back to the bed after I finished making it up I noticed a lump between the duvet and the cover. I went to smooth it out and when I couldn't I had to investigate. Low and behold, the source of the scent was at last discovered:
TURKEY ENCHILADAS!
In my stupor the night before while foraging for an icepack, I had grabbed and taken to bed with me a foil package of leftover turkey enchiladas that Jimmy had frozen.
OM gosh. I just laughed and laughed that I had been sleeping with my sweet new babies and some spicy enchiladas.

50 disorders that mimic ADHD.....

2005-11-05T12:05:00.000-06:00

WOW! I thought this was really interesting and could be helpful. I know I can get mired in all the overlap and co-morbids of spectrum life. Anyway, I thought I'd post this in case someone else might find it to be a useful bookmark.

50 Conditions that Mimic ADHD
ADHD is often diagnosed by health professionals who form their opinion by observing a child's behavior. There are no brain scans, blood tests, or anything else definite that is used during diagnosis. The problem with this is there are many other problems that have the same symptoms of ADHD. Many parents, because of not knowing, settle for ADHD as a diagnosis before looking at everything. For example, any problem dealing with the fuels of the body: water, food, blood and air can cause behavior problems. Water, food, blood and air to the body are just like gas and oil to a car. If you put bad gas or have old or the wrong oil in your car, it will act up just like a child acts up when eating foods they are allergic to, drinking or breathing contaminated water or air or having blood disorders.

There are also many medical, biological, emotional and mental conditions that mimic ADHD also. For those who are searching for reasons behind their child's behavior, here are some possibilities. Only settle for the diagnosis of ADHD after checking out all of these problems and many more.

! Conditions most over looked.

1.(! 1.) Hypoglycemia (Low Blood sugar) Low blood sugar can stem from thyroid disorders, liver or pancreatic problems, or adrenal gland abnormalities, or even an insufficient diet. Hypoglycemia can display the same ADHD like symptoms.

2.(! 2.) Allergies: 15 to 20 percent of the world has some type of allergy. A person can be allergic to nearly anything so check for all forms. Food is one of the primary causes of allergic reactions. Just like the Car and human analogy stated above. If a child eats food they are allergic to, the body will not run properly and that may affect behavior. Everyone has different sensitivities to allergens so just because you aren't affected does not mean your child won't be also. (Some examples, Allergic reactions to food dye, milk, chocolate, and grains, ect.)

3.(! 3.) Learning disabilities: If the primary place of behavior problems is at school, learning disabilities may be the cause of ill behavior. One of the main things that affect a child's self-esteem is how well they do in school. If a child has an undiagnosed learning disorder that makes school much harder and sometimes impossible. Children with undiagnosed learning disabilities are labeled as lazy, stupid, and many other downgrading opinions that affect self-esteem. And many times when a child's self-esteem is at jeopardy they try to make up for it in other sometimes-nonproductive ways such as acting out, bullying, or becoming the class clown.

4.(! 4.) Hyper or hypothyroidism: An imbalance in metabolism that occurs from an overproduction or underproduction of thyroid hormones. This imbalance may cause a variety of behaviors and may affect all body functions.

5.(! 5.) Hearing and vision problems: If a child can't see or hear properly, school and daily things in life are nearly impossible and it may cause ADHD like symptoms especially in educational settings.

6. (! 6.) Mild to high lead levels, even in the absence of clinical lead poisoning: research shows that children with even mildly elevated lead levels suffer from reduced IQs, attention deficits, and poor school performance. Lead is the leading culprit in toxin-caused hyperactivity..

*Other good possibilities to check for

7.(*1.) Spinal Problems: Some spinal problems can cause ADHD like symptoms because if the spine is not connected to the brain properly nerves from the spinal cord can give the brain all of signals at once making a child rambunctious and always on the go.

8.(*2.) Toxin exposures: Children are more vulnerable to toxins than adults. Such as pesticide-poisoning (Eating vegetables and fruit not washed thoroughly, they can be exposed to them by playing outside on the ground), also by gasoline fumes, and herbicides. Inside there are also many toxins. Disinfectants, furniture polishes and air fresheners are toxins that can affect some children's behaviors. Beds and carpets are one of the most dangerous places in the house because they are full of different types of dust, and other toxins. Toxins can cause hyperactivity, attention deficits, irritability, and learning problems.

9.(*3.) Carbon Monoxide poisoning : Thousands of children each year are exposed to toxic levels of this gas each year. Sources include gas heaters, and other gas appliances such as fireplaces, dryers, and water heaters.

10.(*4.) Seizure disorders: The most overlooked is the absence Seizures. During an absence seizure, the brain's normal activity shuts down. The child stares blankly, sometimes rotates his eyes upward, and occasionally blinks or jerks repetitively, he drops objects from his hand, and there may be some mild involuntary movements known as automatisms. The attack lasts for a few seconds and then it is over as rapidly as it begins. If these attacks occur dozens of times each day, they can interfere with a child's school performance and be confused by parents and teachers with daydreaming.

11.(*5.) Metabolic disorders: They reduce the brain's supply of glucose, the bodies fuel and can cause ADHD like symptoms.

12. (*6.) Genetic defects: Some mild forms of genetic disorders can go unnoticed in children and display some of the same symptoms of ADHD. Mild forms of Turner's syndrome, sickle-cell anemia, and Fragile X syndrome are some examples. Almost any genetic disorder can cause hyperactivity or other behavior problems, even if the disorder isn't normally linked to such problems. Many genetic diseases disrupt brain functions directly, through a variety of paths. A simple blood test can rule out genetic disorders.
13.(*7.) Sleeping disorders or other problems causing fatigue and crankiness during the day.

14.(*8.) Post-traumatic sub clinical seizure disorder: It causes episodic temper explosions. These fits of temper come out of the blue for no reason. Some of these seizures can be too subtle to detect without a twenty-four-hour electroencephalogram (EEG).

15.(*9.) High mercury levels: One of the most interesting things regarding high mercury levels is that it can relate to dental fillings. Children who have mercury amalgam fillings in their mouth and grind their teeth are at risk of high mercury levels. American dental associations are defensive on the subject of mercury fillings but many European countries have discontinued the use of them because of side effects. There are also other causes of high mercury levels.

16.(*10.) High manganese levels

17.(*11.) Iron deficiency: Iron is an essential component of hemoglobin, the oxygen carrying pigment in the blood. Iron is normally obtained through the food in the diet and by the recycling of iron from old red blood cells. The causes of iron deficiency are too little iron in the diet, poor absorption of iron by the body, and loss of blood. It is also caused by lead poisoning in children.

18.(*12.) B vitamin deficiencies: Many experts believe that one of the main causes for inattention, hyperactivity, impulsivity, temper tantrums, sleep disorders, forgetfulness, and aggression are caused by faulty neurotransmissions a problem with the neurotransmitters in the brain. Vitamin B-6 is a necessary vitamin used in the making of neurotransmitters that affect behavior. A lack of this vitamin or really any other vitamin can cause a child to act inappropriately.

19.(*13.) Excessive amounts of Vitamins: Excessive amounts of vitamins can be toxic to the body and may cause the same ADHD like symptoms. It is possible to overdose when taking vitamins so make sure you contact a physician and check for vitamin deficiencies before taking extra vitamins.

20.(*14.) Tourette's syndrome: Tourette's syndrome is a rare but disruptive condition. It involves multiple tics (small, repetitive muscle movements), usually facial tics with grimacing and blinking. Tics may also occur in the shoulders and arms. This is usually accompanied by loud vocalizations, which may include grunts or noises, or uncontrollable (compulsive) use of obscenities or short phrases. The tics are worse during emotional stress and are absent during sleep. The cause is unknown. It occurs most often in boys, and may begin around age 7 or 8 or not until the child is in his or her late teens or early twenties. It may, at times, run in families. This disorder can be mistaken for not being able to sit still or impulsive behavior.

21.(*15.) Sensory Integration Dysfunction: Sensory Integration Dysfunction is the inefficient neurological processing of information received through the senses, causing problems with learning, development, and behavior. These children are over-sensitive or under-sensitive dealing in touch, taste, smell, sound, or sight. For example, some of these children crave fast and spinning movement, such as swinging, rocking, twirling, and riding the merry-go-round- without getting dizzy. These children may move constantly, fidget, enjoy getting into upside down positions and be a daredevil. These children may become overexcited when there is too much to look at words, toys, or other children. They may cover their eyes, have poor eye contact, be inattentive when drawing or doing desk work, or overreact to bright light. These children often act out in an attempt to cope with their inability to process sensory information such as acting out in crowded or loud places.

**Definitely check if there is a family history of the condition
22.(**1.) Early-onset diabetes: Symptoms include aggression, depression, and anxiety. If you have a family history of diabetes checking for this is a must.

23.(**2.) Heart disease: It affects blood and oxygen flow to the brain affecting brain function that in-turn affects behavior.

24.(**3.) Cardiac conditions: It can reduce the supply of blood, oxygen and nutrients to the brain. Defective blood vessels between organs to the brain.

25.(**4.) Early-Onset Bi-Polar disorder: Also know as child-like Bi-polar. The experts state that 85% of children with child-like Bi-polar also meet the criteria for ADHD. The symptoms are extremely close. Most people when they think of Bi-polar disorder, think of Adult like Bipolar which mood swings happen over a somewhat long period of time. In child-like Bipolar, the mood swings can happen many times within a twenty-four hour day, known as rapid cycling. At one moment they're calm and the next minute they could be in a full fledge temper tantrum. Some of the symptoms are Distractibility, Hyperactivity, impulsivity, separation anxiety, restlessness, depressed mood, low self-esteem, and many more. Early-Onset Bi-polar should be ruled out before ADHD is considered mainly because they are treated with different medications if you choose medications that is. ADHD is treated with stimulant medications which will make a Bipolar child worse possibly psychotic.

***General problems you can think about yourself and check if you see fit.

26.(***1.) CAPD (Central Auditory processing Disorder) will sometimes occur in children who have had a history of ear infections and/or PE tubes. Symptoms include distractibility, inability to follow a set of verbal instructions, "space out", etc.

27.(***2.) Worms: Such as Pinworms lay their eggs in the anal area, causing tickling and itching, which are most bothersome at night. The lack of sleep from this type of infestation can cause crankiness or bad behavior during the day. When asleep, nightmares may be present. This problem is mostly found in very young children preschool to kindergarten because of primitive toileting skills, they tend to put their fingers in their mouths, and they participate in a lot of hands-on activities with other kids and with pets. Roundworms, hookworms, and tapeworms are other examples that can make a child display ADHD like symptoms. Worms cause hyperactive behavior, learning problems, depression, or attention deficits by making children miserable on the inside.

28.(***3.) Viral or bacterial infections: When a child is affected by an infection that might cause problem behavior.

29.(***4.) Malnutrition or improper diet: Many children in the United States do not eat a well balanced diet. A proper diet is necessary to growing children. An improper diet can affect a child's behavior in an ill way.

30.(***5.) Head injuries: Such as the post concussion syndrome. Some of the symptoms include Irritability, emotionality, memory problems, depression, and sleep disturbances. A concussion can disrupt brain functioning causing ADHD like symptoms.

31.(***6.) Dietary Factors: (For example to much caffeine and sugar) At doses as low as 250 milligrams a day, a level many American children exceed- caffeine can cause rambling speech, attention and concentration problems, agitation, heart palpitations, insomnia, and hyperactive behavior. In a way, it is true we are what we eat.

32.(***7.) Some disorders such as anemias reduce oxygen to the brain causing disturbance in the brains chemistry causing ADHD like symptoms.

33.(***8.) Fetal alcohol syndrome (FAS) or Fetal alcohol effects (FAE): FAS is a name that doctors use to describe the damage done to children's brains and bodies when their mother drink heavily during pregnancy. It is the leading form of mental retardation today. Prenatal alcohol impairment, however, also comes in a milder form called fetal alcohol effects (FAE). Children with FAE often don't look disabled, and they tend to score in the low-normal or even normal range of intelligence. But these kids aren't normal. Their mal-developed brains cause them to exhibit a wide range of behavior problems, including hyperactivity, attention problems, learning disorders, and ethical problems such as stealing, lying, and cheating.

34.(***9.) Intentionally or unintentionally sniffing materials such as modeling glue or other house hold products.

35.(***10.) Some drugs:, (both prescription and illegal) can cause the brain to atrophy, leading to disturbed cognition and behavior. If your child routinely takes prescription or over-the-counter medications for asthma, hay fever, allergies, headaches, or any other condition, consider the possibility that the drugs are causing or contributing to behavior problems.

36.(***11.) :A beta-hemolytic streptococcus:(better known as "strep.") Although these bacteria are most commonly thought of as the cause of strep throat. Left untreated, strep can cause rheumatic fever and a movement disorder called Sydenham's chorea. Moreover, recurrent infections can lead, in susceptible children, to a group of symptoms collectively known as PANDAS (Pediatric autoimmune neuropsychiatric disorders) Some symptoms of PANDAS include obsessive-compulsive behavior, Tourette's syndrome, hyperactivity, cognitive problems, and fidgeting.

37.(***12.) Lack of exercise: "Hyper Couch Potatoes" are children who aren't moving enough. Some children because of lack of exercise may seem as though they are always in motion, but often that motion is in fits and spurts: leaping up from a chair, spinning around in the lunch line, bouncing in a chair while watching TV. Quite a few hyperactive children actually do not get enough sustained, strenuous exercise to stay healthy mentally and physically. Exercise can make people happier, less anxious, less hyperactive, and less depressed. One reason is that exercise increases serotonin levels in the brain exactly what Prozac, Elavil, and similar drugs do.

38.(***13.) Gifted Children: Gifted children often display ADHD like symptoms because most of the time they are bored with what other kids their age are doing. Behaviors associated with Giftedness are poor attention, boredom, daydreaming, low tolerance for persistence on tasks that seem irrelevant, their judgment often lags behind their development of intellect, their intensity may lead to power struggles with authorities, and they may have a high activity level. They may need less sleep compared to other children, and they may question rules, customs, and traditions. If your child scores above average on IQ tests, aces exams, has no trouble with homework, has no apparent learning disabilities, and primarily exhibits his or her problems mostly at school, maybe seeking a more challenging class or school would help.

39.(***14.) Emotional problems: Kids who are experiencing emotional problems most often display ADHD like symptoms. For example, kids who are constantly subjected to bullying at school can display ADHD like symptoms. These are normal kids that act out because they are scared. They experience sleeping problems, sadness, and they develop physical symptoms, especially if they think those symptoms will keep them home from school. Often they can't concentrate in class, partly because they are worried and partly because they are suffering from sleep deprivation. Really any emotional problem at school or home in which a child is having trouble coping with can result in ADHD like symptoms.

40.(***15.) Some kids are spoiled and undisciplined: A number of children labeled hyperactive are merely under-disciplined children. They tend to run their household and get away with anything. Dr Syndey Walker stated this problem best of why parents under-discipline their children. He stated that he blamed not the parents but on the psychological experts who have counseled parents for several decades that children are fragile, easily traumatized little flowers who could be ruined for life by a cross look or a scolding which is very untrue. Children need firm discipline and strict rules not abuse but setting rules and standards and demanding those standards be met, and giving consequences when your rules are broken. Labeling undisciplined kids as ADHD who are not gives them an excuse for their misbehavior, which will often make it worse.

41.(***16.) Spirited children: When dealing with spirited children the problem usually does not lie with the child but with society's perception of what normal childhood behavior is. Many normal children, according to some people, display ADHD like symptoms not because they are hyperactive or lack sufficient attention spans but because the person forming the opinion has unrealistic standards of how a child should behave.

42.(***17.) Lack of understanding and communication skills: One of the main reasons why a child acts out and throws temper tantrums when they have a problem is because of their lack of understanding of a problem and lack of expressing how they feel. Children do not have the vocabulary or know how to express their emotions like adults do, that's why many act out when they are in a difficult situation. They are not able tell you something is wrong so they show you instead. This is one reason why any emotional or medical problem can cause acting out behavior in children.

Rare Rare conditions but still good to check for and know about.

43.(Rare 1.) Early stage brain tumors: Found rarely in children but should still be considered. Statistically, this diagnosis may not be important but to individual families, they assuredly are.

44. (Rare 2.) Brain cysts: Another rare cause of hyperactivity but should still be considered when searching for the reasons behind displayed ADHD like behavior.

45. (Rare 3.) Temporal lobe seizures: The Temporal lobe is a part of the brain. Any brain malfunction can cause inappropriate behavior. That's why conducting brain scans is a must when trying to figure out behavior problems.

46. (Rare 4.) Klinefelter syndrome: A Genetic disorder in which a male has an extra X chromosome (XXY). Many individuals experience learning, behavior, and social problems. A degree of subnormal intelligence appears in some affected individuals. Many affected individuals are skinny and taller than most of their peers. A simple blood test can rule this disorder out.

47.(Rare 5.) Genetic Disorder XYY: The extra Y chromosome has been associated with antisocial behavior.

48. (Rare 6.) Porphyria: A hereditary enzyme-deficiency disease. Enzymes are very important to our body's chemical reactions. Really nothing occurs in our body without enzymes. A lack of enzymes causes body malfunctioning which can cause ill behavior.

49. (Rare 7.) Candida Albicans infestation (Yeast Infection) : Candida infestations cause hyperactivity in children. Most children who do suffer from Candida infestations have some underlying problem frequently an immune disorder, or a disorder affecting carbohydrate metabolism and thus altering blood sugar levels. So immune disorders can cause other problems that also have the same symptoms of ADHD.

50. (Rare 8.) Intestinal parasites: Parasites rob the body of needed nutrients which in-turn affects behavior.

another first....

2005-11-05T12:01:00.000-06:00

Jimmy's birthday is tomorrow. To celebrate, we are taking the girls to their first movie theater movie, "Chicken Little." They are very excited. So are we. We've been practicing and talking about it for two weeks: waiting in line for the tickets, NOT getting a snack because we bring our own, sitting down and keeping our hands and feet to ourselves, about the noise and smells, etc. I hope they don't freak out.
I'll keep ya'll posted. LOL.

thought for the day

2005-11-05T11:57:00.000-06:00

"There is a degree of tolerance which borders on insult."
~Jean Rostand

overheard

2005-11-01T20:08:00.000-06:00

The girls were watching a program on a local Christian station that is supported by viewers contributions. Anyway, between shows, there was a voice over thanking the viewers for their support. You know this kind of thing:"This programming is made possible by viewers like you. Your contributions keep shows like this on the air. Thank you."
I heard Abby gasp solemnly but also excitedly to Emma Jean, "We are the ones Emma Jean. We make it popsicle!!"

"I bounced 60 times mom." What good jumping! "Actually, it was bouncing, mom..."

2005-10-29T21:45:00.000-05:00

"If you put 100 people with autism in a room, the first thing that would strike you is how different they are. The next thing that would strike you is the similarity."

-- Dr. Fred Volkmar, the Harris Professor of Child Psychiatry and professor of pediatrics and psychology, "Lifting the Veils of Autism," International Herald Tribune, Feb. 26, 2004.

I had not one but TWO of those rare moments this evening at the "Trunk-or-Treat" event we attended.
We were to meet a couple of families from church at a neighboring church for this fall festival type gathering. Being on my own, I really didn't get to visit with them; the girls had their own agenda naturally. LOL. But two interesting things happened while we were there.
Shortly after we had arrived, while I was waiting for the girls to come down one of those inflatable tunnel slide things, I spotted this woman who for whatever reason I recognized immediately as a gal I spoke to at length at an Autism Resource Fair about three weeks after Abby had been dx'd. That encounter was very encouraging for me, but still, it has been a few crazy years since. What was really funny is that she remembered me! She said, "Ah yes! And ya'll were on TV last Feb., right?" She had not met the girls before. She was appreciative of both their progress and their ongoing struggles, all without me uttering a word. Anyway, it was just cool.
Then later, I was in line with Abby at a bounce house (Beans was with one of the other families' dads) and she was about to flip out to get in, but there were some bigger boys in there. One 'a little too big,' I thought at the time. Another lady got to talking to me, we were chuckling over Abby's particularlness about various things as she prepared to enter the bounce house. I did not say anything about her dx of course, I mean, why would I? She said a few things that hinted at the subtext of the ASD lingo, but neither of us came out and said anything. When this boy who turned out to be her son exited I knew. He was a very HFA 16 year old, but still...
At any rate as Abby went in and he got reaccustomed to being out, Abby informed me that she would jump twenty times, then tweny more times and "Did I know what 20*20=? Four, zero, zero. Mom, I got something to tell you...When you have two zero's next to each other and you put number in front it means that number and one hundred." This is an old standby of hers I must endure at least 25 times a day or more. I was half listening when I caught the mom's eye and I knew that she knew.
It was so neat. I can't exactly explain it but for a split second I knew for sure there was someone on this planet, possibly in a neighboring zipcode who I didn't have to explain a thing to.
God is good.
And anyone who managed to read this whole post ain't too shabby themselves.
__________________

'Fix your thoughts on what is true and honorable and right. Think about things that are pure and lovely and admirable. Think about things that are excellent and worthy of praise.'
Philippians 4:8

Jason Upton ~ Faith

2005-10-10T21:36:00.000-05:00

Okay, please bear with me. Most of ya'll know I like Christian music and much of it touches me and is so relevant. I adore the old hymns and the rockin' Christian tunes as well as the singer/songwriter genre. But friends, today I listened to a CD I got a while back and never really played. I think I hit the first song and it just wasn't what I was expecting and I never played it again. Today I did for some reason and this CD is so...simply put annointed. The musician is I guess. I am pasting the lyrics to one song ('song' seems insufficient to describe it) from the CD. I was literally weeping, just overcome while it poured over me. I am not a hard rock or anything, but it is not like me to be so moved. Anyway, if reading it strikes you at all, then hearing it will blow you away. Even dh was stilled completely when we listened to it together tonight after the girls went to bed.
Maybe it is just where we are right now, but in case someone else might need this balm that soothes and sparks at the same time, I want to pass it on.
The artist is Jason Upton and the album is called Faith and this song is also called Faith....

Faith
(inspired by the Holy Spirit and sung by Jason Upton)

Let faith arise, oh Lord, let faith arise
In the deepest parts of my being, oh Lord
In the most broken parts of me, oh Lord
Friends have failed me Lord, let my faith arise
Loved ones have failed me Lord, let my faith arise
Heroes have failed me Lord, let my faith arise
Let my faith arise
Let my faith arise
Let my faith arise
Let my faith arise
I say NO to the discouragement that keeps me down
I say NO to the things that keep me back from You
And this broken heart inside of me
Broken in so many pieces
By so many circumstances
I say NO to just letting it stay that way
Because I’m learning to trust that it’s not You that hurt me
I’m learning to believe that it’s not You that deserted me
I’m believing that You still love me
Brokenness and all
I’m believing that You’ve got a plan for me
I’m believing that You will restore me
I believe that You will awaken my soul
And let, let faith arise again, I believe
I believe like a little child again
I’m gonna dance in my trust in You, oh Lord
I’m gonna dance

two excellent reads

2005-10-10T09:23:00.000-05:00

"Not Even Wrong," by Paul Collins

So good. Whether you have a vested interest in the subject matter or not, this is a well-crafted yarn. He is an amazing writer. My dh is not a big reader and he could not put this down.

http://www.bookslut.com/nonfiction/2004_06_002635.php

And

"A Thorn in My Pocket," by Eustacia Cutler

Written by Dr. Temple Grandin's mother. When I learned that she had at long last published a book about Temple's early life I was like, "FINALLY!" The insights into the autistic world that Temple has offered in her books and lectures are invaluable, but as a mother I couldn't help but wonder...what was it like for the rest of the family? People on the spectrum are famously self-absorbed (hence the name of the disorder auto, which means "self" at it's Latin root) and Temple's autobiographical accounts are no exception, bless her. Anyway, this book just came out and the prologue alone has been so moving to me and Jimmy as well. I wanted to share a little bit of it because it may help some of ya'll. Bring you some comfort and encouragement or at the very least a sense of some kind of community. I know that we often feel so alone, despite the rising numbers that this epidemic claims. The disorder itself creates isolation, it just does.
Anyway, here it is, from her book, and I just LOVE this title,

"A Thorn in My Pocket:"

"I've learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know that she is a baby, but, equally true is a mother needs a baby to know that she is a mother. When those first infant/mother resposes can't grow, a whole family identity is thrown out of kilter, I understand that far better now, from the vantage point of years than I could when I was young. I understand too how much parents long to be good parents. The purpose of my lectures is to find them and comfort them in their never ending battle with autism.

"Think of me as your future," I tell them. "I am where you will be many years from now, when you know how it all played out, when 'what will be' has turned into 'what was,' and you will have come to terms with it.'

"Perhaps not in the way you thought you would, but you'll no longer feel trapped in the morass of angst and guilt. You will have resolved your child's future and your own. You'll know you've given full measure, and the measure you've given has never been pointless."

"I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, iin the future to your surprise, your dreams will have changed and changed you."

" I know that's not what you want."

"What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That's the point; that's the talisman."

Theodore Morrison, who knew Robert Frost well, said that Frost also came late to lecturing and was never entirely at ease with it.

"I always carry something in my pocket I can touch when I am talking," he told Morrison, "so I'll remember who I am. Lately it's been a thorn."

http://http://www.futurehorizons-autism.com/detail.asp?PRODUCT_ID=A+Thorn+in+My+Pocket&SRCH_ID=Thorn+in+My+Pocket&SRCH_DESCRIPTION=&SRCH_MANUFACTURER=&SRCH_SUBJECT=&SRCH_CATEGORY=ALL&PageNo=1&RowCount=6

I am not superstitious

2005-10-08T20:13:00.000-05:00

And I don't believe in 'jinxes,' but I have been halfway afraid to report something. Suddenly I am ashamed of myself for being so selfish when the glory isn't mine to do anything with but share anyway.
when will I learn????

For the past nine days now, Abby has been rocking and rolling! Just a super fun, funny, silly, affectionate, normal(ish) little girl. One major wing-ding in eight days! She has been letting me give her her shots and vitamins without a big ta-do and she has even been telling little jokes. Her language skills...OMGOSH!!!!!!!!!!!! Eye contact...suddenly improved like 70%. Incredible burst of growth seemingly out of nowhere. I am so awed by her right now I can barely shut my yap. I am agog in wonder.
Praise God! And thank you to all my prayer warriors. You guys are so awesome and such a blessing to my family. I love you man!

__________________

Satisfy us in the morning with your unfailing love, so we may sing for joy to the end of our lives. Give us gladness in proportion to our former misery! Replace the evil years with good. Let us see your miracles again; let our children see your glory at work. And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!
Psalm 90:14-17

thought for the day

2005-10-06T20:49:00.000-05:00

Habit:

A Shackle for the free.
~Ambrose Bierce

open letter to the moderator of the HFA forum

2005-10-04T15:34:00.000-05:00

I am sorry that the "Top Ten" post I made in the 'Humor' forum was so terribley unwelcome and dare I say it? Misunderstood in it's intent. But I should know better, given what the ubiquitous 'they' say about where the road of best intention leads....
I am thoroughly chastened. Well maybe not thoroughly, but I will sincerely practice greater restraint if and when I post here in the future.
In other words, enough already.

-----------------

Later that same day....

Of course I can't leave it alone....so I had to reply to 'her':

I did see that program. I found her to be very insightful and articulate and I was grateful that she had been freed from the fetters of her autism enough to be recognized as an intelligent human being with emotions and feelings and the ability to learn a number of intellectual facts, with perfectly functioning reasoning skills and capable of developing some behavioral stratagies that would permit her more freedom still from the "awful autism," as she so achingly described it. I am not unfamiliar with the differing outlooks within the autism community about the disorder and what it means to the spectrum of people affected by it within that community. I am not yet entirely familiar with how my own daughters will feel about it. I pray that they will find a way to accept themselves as the perfectly designed children of God that their dad and I believe that they are. Right now, they have to work a lot harder than it seems most kids their age do to gain enough self-control and understanding of this wacked out world they were born into to participate to whatever degree they are able and willing to do so as they mature. Until they can tell me how they feel though, we just muddle through learning together about what works for them and what doesn't and when we hit a brick wall we try to determine how high it is then whether or not there is a way over it, if it is an absolute necessessity that they learn how to scale that wall, or if there is a way around it. Or if there might be some flexibility in that area of life later, then sometimes we just take a step back and say, "Well then, not right now anyway. Maybe we'll try this again in the future."To me, that "Top Ten" bit was rye and rueful, but humorous and if it was written by a person filled with self-loathing and for the sole purpose to ridicule himself and how he lives with his disorder then I didn't get that from it at all. However, it was very good for me to see that someone else read it completely differently because as I have learned along this fantastic journey (so far) that I am not that great at considering another person's perspective myself and this is a stunning instance of just how profoundly disabled I can be in that area. That I need to be mindful of that fact as I deal with my two very different yet strangely similar precious daughters on their fantastic journey and of other's quite possibly differing perspective that we will meet along the way.I reiterate my previous apology and add a sincere and unsardonic thank you for responding because I have learned something from you tonight. You were kind about it and I really appreciate that too.

The only reason it bugged me is because she struck me as condescending in the way she upbraided me, as if I just fell off the turnip truck on my way to the HFA board, KWIM? Granted, I am not well known there, but I thought I had been around long enough to have earned my chops. In fact, I know I have hence my reply.Whatever. I shouldn't care. It's just a little ego bruising, no one got hurt. But I am shamefully attached to my pride at times.

my sweet Bean

2005-10-02T16:31:00.000-05:00

She tries so hard and is acutely aware of her shortcomings. I forget that sometimes in the midst of what feels like our daily battles.
Today I was trying to get her to retell something to me that we had just discussed (frustrating for both parties to say the least, but necessary unfortunately) and this is what she said to my request:

"But Mommy, I am not good at words. I can't make them work from my brain in my mouth."

I am thankful for this bit of insight today.Please pray for me to be more mindful.
__________________
Satisfy us in the morning with your unfailing love, so we may sing for joy to the end of our lives. Give us gladness in proportion to our former misery! Replace the evil years with good. Let us see your miracles again; let our children see your glory at work. And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!
Psalm 90:14-17