Friday, January 28, 2005

Sweet poem

Mommy, please don't cry, Daddy don't you weep (a poem for autistic children everywhere, and their
Mommy's and
by Sally c. 1999

Dear Mommy, don't you cry now
and Daddy, don't you weep.
I want to whisper in your ear

before I go to sleep.

I know that when I came here
I seemed perfect in every way
and you were so proud Daddy
when you held me on that day.

And Mommy when you kissed me
and wrapped me up so tight,
I felt as if I belonged here,
and everything was right

When things got really scary
and I began to slip away
I saw your face, dear Mommy
as you knelt by me to pray.

And Daddy, I always notice
when you wipe away a tear,
or watch the other little boys
as they run and laugh and cheer.

I may not be able to tell you
how much I love you so,
or even show you how I feel
and what I really know.

But when you hold me Mommy
at night when all is still
I hear your dear heart beating
and I know that all is well.
And Daddy when you take me
to the park, to run and play
I know that you still love me
though the word's I cannot say.

So Daddy don't you cry now
and Mommy don't you weep,
I want to tell you something
before I go to sleep.

I may be sort of different,
and you may not understand
I know that I am not that child
that you and Daddy planned

But I love you both so very much
and I know you love me too
and one day when this life is done
You will feel my love for you.

I know the future is unknown
and you will always have to be,
the ones who love and listen
and take good care of me.

The road we walk is rough sometimes
and you cry a lot of tears,
but one day we will turn and laugh
as we look back o'er the years,

So Mommy don't you cry now
and Daddy please don't weep
I want to say, I love you
before I go to sleep.

Monday, January 24, 2005

To the "skeptic" at the autism recovery support site

I certainly did not mean to start anything. It is a new concept to us too. We knew she was doing tremendously better, and we knew what we petitioned the Lord for, but we were also in a place of acceptance of His will for her too.
I also see both sides of almost every situation and you're right, it can be a blessing and a curse. Obviously we are thrilled with her "recovery." Am I dancing up and down the halls at BI (the treatment center) with the news? No. It breaks my heart everytime a parent who has been in the trenches longer and fights just as hard grabs my arm and pleadingly asks, "What else are ya'll doing?" It really does. I tear up thinking about their faces, and their childrens' faces. I would never intentionally wound someone by directly or in a back-handed way, blaming them for their child's less profound remediation. How cruel. And I am not comfortable with the emphatic way a lot of parents I encountered early in this journey insisted I do one thing or another. I determined early on I would not do anyone that way.
We do not know why some children respond more quickly or to a greater degree than others. It is a mysterious and bewildering disorder in that way. I hope that eventually the answers will be found. I wish the money was there for every person on the spectrum to access any intervention that they seek. I know how hard it has been for us to make decisions for our girls based on resources rather than what therapies might truly serve them best.
All of that said though, like the author of the piece about recovery on this website, should I not talk about what has happend for us because it won't happen for everyone? As hard as it is for me to think about hurting someone, I do not think not acknowleging this great work in our lives is what I am supposed to do either. So, what is a compassionate but passioate person to do? My prayer has been and still is for God to use this, my life, Abby's "recovery," for His purposes.
I have had many crisis' of faith throughtout this. More recently than in the beginning. When we realized Abby's twin was not quite as "NT" as we had originally believed, no matter how much I needed that to be the case, it hit me like a ton of bricks:
I can't fix these children. I can't. I never could. They are not mine to fix.
Believe me, I have been plenty sad and hurt and out and out upset with God, frankly. So this recent revelation is huge to me and I do not take it lightly or the responsibility I feel to being used by God however he sees fit to use me.
I do not believe that Abby is "all better now." We will carry the war wounds always and her "trick knee" is bound to act up. In fact just this morning when she was having a wing-ding before school over some trivial thing I thought, "Well if anyone had the spycams on in here right now they'd say, 'This is a 24 on the CARS? THIS is recovered?' "
Anyway, I've rambled on enough. I apologize if I ruffled any feathers. I am not one to rabble rouse as a general rule. So I'll just start over:
Hi, my name is Susan and my daughter formerly tested high-moderate to severe on the CARS. A few days ago after an exhausting year of intensive therapy of all sorts, we learned that she is scoring in the non-autistic range on that particular test, as well as the Vineland assesment. I am glad that I found ya'll and look forward to getting to know you all.

Saturday, January 22, 2005

Two funnies: Satires on the "Holland" poem

Now I love the original poem. I think it is beautiful and it really touches me, even today. But...I came across these and I had to LAUGH! I am sharing them with you because if you have spent much time on the spectrum, then you ain't always tulips and little wooden shoes.

When I first found out what we were dealing with, I needed the sweet encouragement that the original poem offers. After awhile though, when things stopped seeming so incredibly scary, I began to laugh again. Recently, I reread Temple Grandin's book, "Thinking in Pictures" and when I came across certain passages that were clearly written with her particular brand of humor I remember when I read the same passages a year ago, I thought, "How can she laugh about that? That is terrible and heartbreaking!" This time, I could chuckle too or see the wisdom of her experience in a way I could not fathom before.
Anyway, if anyone finds these satires hurtful or offensive, I will delete them. My intent is only to offer some levity to people in circumstances that can be bone crushing day in and day out.

by Susan F. Rzucidlo(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

another one:

Holland Schmolland
By Laura Krueger Crawford

If you have a child with autism, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

"Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives. You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides and gelato. However, when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans. You rant and rave to the travel agency, but it does no good. You are stuck. After a while, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in wooden shoes, the French fries and mayonnaise, and you think, “This isn’t exactly what I planned, but it’s not so bad. It’s just different.” Having a child with autism is supposed to be like this -- not any worse than having a typical child -- just different."

When I read that, my son was almost three, completely non-verbal and was hitting me over a hundred times a day. While I appreciated the intention of the story, I couldn’t help but think, “Are they kidding? We are not in some peaceful countryside dotted with windmills. We are in a country under siege -- dodging bombs, trying to board overloaded helicopters, bribing officials -- all the while thinking, “What happened to our beautiful life?”

That was 5 years ago. My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we’ve created… well… our own country, with its own unique traditions and customs.

It’s not a war zone, but it’s still not Holland. Let’s call it Schmolland.

In Schmolland, it is perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end to end. You can show affection by giving a “pointy chin.” A “pointy chin” is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person’s shoulder. For the person giving the “pointy chin” this feels really good, for the receiver not so much – but you get used to it. For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say “Oh Pongo.” When mad or anxious, you might shout, “Snow can’t stop me!” or “Duchess, kittens, come on!” Sometimes, “And now our feature presentation” says it all. In Schmolland, there’s not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00am, are all traditional Schmutch pastimes.

The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren’t always successful. It’s perfectly understandable that an 8-year-old boy from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year old out of the store kicking and screaming while all the customers look on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people. Where we live, it is not surprising when an 8-year-old boy reaches for the fleshy part of a woman’s upper torso and says, “Do we touch boodoo?” We simply say, “No we don’t touch boodoo” and go on about our business. It’s a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings. And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland who insist that the pants must come off no matter where they are, and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking with a person from Norway, (or in our case someone from Schmenmark talking with someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. “Oh your child is a runner? Mine won’t go to the bathroom without asking permission.” “My child eats paper. Yesterday he ate a whole video box.” “My daughter only eats 4 foods, all of them white.” “My son wants to blow on everyone.” “My son can’t stand to hear the word no. We can’t use any negatives at all in our house.” “We finally had to lock up the VCR because my son was obsessed with the rewind button.”

There is one thing we all agree on: we are a growing population.

10 years ago, 1 in 10,000 children had autism.

Today the rate is approximately 1 in 250.

Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic pre-disposition has collided with too many environment insults -- toxins, chemicals, anti-biotics, vaccines -- to create immunological chaos in the nervous systems of developing children. One medical journalist speculated that these children are like the proverbial “canary in the coal mine” here to alert us to the growing dangers in our environment. While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what “could be” to “what is.” I look around at this country my family has created, with all its unique customs, and it feels like home. For us, any time spent “nation-building” is time well spent.

Friday, January 21, 2005

What we mean when we say Abby is 'recovered'

This mother's explanation is really good. I feel nervous about navigating unchartered territory. I was glad to come across this woman's site.

Here is another mom's perspective and one that I really relate to because of the guilt I feel about ABby's amazing progress. I know that sounds goofy, but it is heartbreaking when other parents at BI grasp my arm and pleadingly look into my eyes (sometimes with tears) and ask, "What else are ya'll doing? What else?" It kills me. I am tearing up right now thinkng about those moms and dads. Some of them have been in the trenches a really long time too.Some of their children still do not speak. Some of them have other issues accompanying the autism.


Recovery: The Word That Shall Not Be Spoken

In the great movie, The Village, there were monsters in the woods that went by the name of "Those We Do Not Speak Of" or something like that. That's similar to the way we speak of recovery for children with autism. Can a child with autism recover? Yes. According to Ivar Lovaas' well-controlled and now replicated studies, about 47% of kids who receive Applied Behavior Analysis (ABA) at the maximum level (40 Hours per week) will need no special education services by school age. We have all heard about such kids. I have been fortunate enough to know of at least two of these kids. But we do not talk about them too much because . . . other parents will expect that their child too will recover. We dare not speak of it too much because we do not want to offer false hope. What if their child is in the 53% group? The fact is, ABA, especially if accompanied by all the other common interventions for autism (GFCF Diet, D.A.N. Protocol, speech therapy, occupational therapy, physical therapy, etc.), can help children recover from autism to the point that they no longer are distinguishable from their average peers. Even if the child does not recover, they make tremendous gains in IQ, basic and advanced skills, and in behavior control.

Now all this is said with the understanding that some kids with autism are at severe levels and may not fully recover even with all the best ABA training and other interventions in the world. That's another reason we do not speak of recovery too often. We do not want to "rub it in their noses" that some kids will recover but not their kid. That kind of hurt can't be discounted. However, we cannot ignore something that helps so many kids just because it does not help all kids. Jesus healed a lot of people, but He did not heal all people. Why? We will only know that answer when we see Him. (Recovery from autism is something like this too - it's in God's hands also - the children that I know who have recovered were covered by a lot of prayer. Why all kids do not recover will have to be one of those questions we ask Jesus at That time also.).

Thursday, January 20, 2005

Link to an autism checklist:

Here is a relatively easy to follow yet thorough checklist. I have links to more, but they can be either too simple (in my opinion) or too clinical. This one is pretty balanced.

Wednesday, January 19, 2005

Some autism facts and fiction...

It's probably not what you think!

Myth! Children with autism never make eye contact.
Many children with autism establish eye contact. It may be less than or different from the typical child, but they do look at people, smile, and express many other wonderful non-verbal communications.

Myth! Inside a child with autism is a genius.
The myth that a genius is hidden in a child with autism may exist because of the uneven nature of the skills that many children exhibit. Children with autism may have splendid physical skills, but no functional language. A child may remember the birthday of every child in his class at school, yet be unable to determine when to use the pronouns "you" or "me" appropriately. A child may read with perfect articulation and not understand the meaning of what he has read. Children with autism exhibit a full range of IQ scores. Most children with autism will exhibit significant delays in some areas of mental processing. A very small percentage exhibit above normal intelligence; an equally small percentage of children exhibit very low intellectual functioning.

Myth! Children with autism do not talk.
Many children with autism develop good functional language. Most other children can develop some communication skills, such as use of sign language, pictures, computers, or electronic devices.

Myth! Children with autism cannot show affection.
Probably one of the most devastating myths for families is the misconception that children with autism cannot give and receive affection and love. We know that sensory stimulation is processed differently by some children with autism, causing them to have difficulty expressing affection in conventional ways. Giving and receiving love from a child with autism may require a willingness to accept and give love on the child's terms. Sometimes the challenge for parents is waiting until the child can risk a greater connection. Parents, grandparents, aunts, uncles, and friends may not understand a child's aloofness, but can learn to appreciate and respect his/her capacity for connection with others.

More Myths and Misunderstandings about Autism

Progress means that the child doesn't have autism.
Behavior change from maladaptive to adaptive isn't autistic.
Children with autism do not smile at you.
Children with autism do not give or receive physical affection.
People with autism do not notice others and don't pick up cues from peers/adults.
People with autism do not want friends.
Individuals with autism do not relate to peers/adults.
People with autism could talk if they wanted to.
When a child with autism does not respond to a question/direction to which he has previously given a correct response, he is being stubborn/non-compliant/obnoxious.
Autism can be outgrown.
Autism is an emotional disability.
Children with autism cannot learn.
Children with autism will show no imagination.
Bad parenting causes autism.
Autism is rare.

• Facts • Facts • Facts •
There are great differences among people with autism. The range of autistic characteristics exhibited will be different in each person affected. Some individuals may exhibit only mild language delays, while others may have no functional speech. Regardless of language skills, social interactions are typically a challenge for most individuals with autism. They may have average or above average verbal, memory, or spatial skills, yet find it difficult to be imaginative or join in a game of softball with their friends. Others more severely affected may need greater assistance in handling day to day activities like crossing the street or making a purchase. Contrary to common belief, many children and adults with autism will make eye contact, show affection, smile, laugh, and express a variety of other emotions, though perhaps in varying degrees. Like others, they respond to their environment in positive and negative ways. The autism may affect their range of responses and make it more difficult to control how their bodies and minds react. People with autism live normal life spans and some of the behaviors associated with autism may change or disappear over time.

Some people who are very high-functioning have slipped through the cracks, so to speak and have gone undiagnosed their whole lives. Whole groups of the population have identified with Asperger's Syndrome since it started making the papers, many of whom are very succesful in computers and engineering. It is sometimes called the "Engineer's Disease" or "Geek Syndrome."

I am not an alarmist, but if you have a little someone in your life and you think something needs to be addressed in this child's development, now is the time. I encourage you to find an SLP to evaluate him and make sure you tell her/him about any behavior issues. Try to go to this kind of appointment without any other kids unless it is unavoidable. I find I can really concentrate better on the child who I am concerned about if I am not distracted by anyone else. If you have access to a developmental pediatrician or children's phsychologist (esp. one affiliated with a university), go on in, at best your mind will be put to restand you can take your prozac and figure out ways to keep the little dickens engaged. And if something is amiss, you will be that much more ahead of the game.
Beans has been impossible since birth and SO UNBELIEVABLY LOUD! We called her Ethel Mermen when she was a tiny baby. She got kicked out of the nursery at the hospital, no joke. Her behavior issues are intense. Discipling her is difficult and the only technique that is effective is completely ignoring her, but that is hard on the nerves and not too well received in public.
If you doubt yourself too much, then start out by asking anyone who spends time with him what they think. I'd be careful about giving your reason why, just see what they say. Preface it with a request for transparancy. I mean you're not on a praise expedition, KWIM?

BTW if you are wondering, "What exactly is an SLP?"

An SLP is a Speech and Language Pathologist they should encourage you to see an ENT/audiologist too. If they don't I'd find another SLP. Be sure to mention any behavioral problems and be as specific as possible.

Check with Easter Seals. Check with your local Early Childhood Intervention program, but be smart about them because they are only as good as their program.
Texas'..bad. Other state's ECI...pretty good.

Also, there are lots of other issues that can be associated with both speech problems and behavioral problems aside from ASD. Please don't let the "A" word keep you from looking into this stuff.
CAPD (Central Auditory Processing Disorder)is one example:
Symptoms of CAPD can range from mild to severe and can take many different forms. If you think there may be a problem with how your child processes what he or she hears, ask yourself these questions:

Is your child easily distracted or unusually bothered by loud or sudden noises? Scared to death of the vacuum, hairdryer, etc.
Are noisy environments upsetting to your child?
Does your child's behavior and performance improve in quieter settings?
Does your child have difficulty following directions, whether simple or complicated ones?
Does your child have reading, spelling, writing, or other speech-language difficulties? Is abstract information difficult for your child to comprehend?
Are verbal (word) math problems difficult for your child?
Is your child disorganized and forgetful?
Are conversations hard for your child to follow?

We suspect Emma Jean has CAPD as well as the dyspraxia. I am pretty sure that anyone that has autism has some degree of APD, but don't quote me on that. I have been told that we will have to wait until Beans is much older to really confirm a true CAPD. I'm checking that out for accuracy. Of you want to read up on CAPD, I read a good book about it called, "When the Brain Can't Hear," by Twri James Bellis, PH.D.
I keep being told that if she does have a CAPD then we are very fortunate that we caught it so young.
You'll have excuse me if I'm not busting out the party horns.

Wednesday, January 12, 2005

Temple Grandin on "Fresh Air"

Very interesting interview with Temple Grandin on NPR's "Fresh Air."

She is a remarkable woman. Very accomplished by any measure, but especially so as a person with ASD.

"NPR : Temple Grandin: A
Key to Animal Behavior"

Thursday, January 06, 2005

Abby is just amazing us...

at every turn.

Just now she was up in our bed with Jimmy and I heard her say, "Daddy? I missed you while you were gone."
She said it unprompted and unscripted and with the right prosody. She sounded very natural.

Last night, the girls were watching "Barbie in Rapunzel." On the DVD at the end there is a little clip about a young girl IRL who is an artist. We are always praising Emma Jean's artistic ability (though Abby is quite gifted too, but differently) and when my sister was here recently who is an artist, we spent a lot of time on the subject. Anyway, Abby turned to Emma Jean and said, "That girl's an artist just like you Emma."

I was so wishing someone else had been here to hear her say that. Very neat-o.
There has been an explosion of progress with ABby in the last 7 days. It just happens like that...BOOM! Huge leap. I always wonder...why now? What did we do? This time I think it might have to do with the chelation and hopefully getting all of those toxic metals out of her body.

On a side note....Emma Jean used the pronoun "she" accurately on the first try three times yesterday, HOORAY! We have been drilling this for months with no improvement. I was thrilled. I made a big deal out of it. Maybe it will stick, though that's the thing with dyspraxia, language mastery comes and goes. It's so frustrating.
Regardless, I am counting it as a score for Beans!!

It's gonna be a good year.

Wednesday, January 05, 2005

same song, second verse...Beans

She began at BI (where Abby just graduated from) yesterday. She was excited, but a little reserved when we were going so I think she was nervous too.
She did fine though. It was mostly a day for the therapists working with her to get to know her better. She had them laughing from the report sheet sent home.
For some reason it made me tear up to read through all her data sheets. I guess it is still sinking in that she is going there now. I can't explain my feelings. I am very glad that we have this opportunity for her, but I am still sad too.
Anyway, she goes back again on Thursday.

Monday, January 03, 2005

Through The Eyes Of A Special Needs Child

WRITTEN BY: BEA Rosencutter 11-27-97

S - Spend time getting to know me
P - Please be patient with me; I may not be able to do the
things your child can
E - Enjoy learning about what I have and what is wrong with me so
you will understand
C - Care about what my parents tell you about how I communicate
I - Imagine if your child had problems then realize what my parents
L - Listen to me, I may be hard to understand but if you take the
time you can understand me. Learning is very hard for me; I may
not be at my age level

N - Never blame my parents they didn't do anything wrong, they
didn't cause me to be this way
E - Encourgae my parents they need it
E - Entertain me, so my parents can have a night off
D - Distraction is part of my life daily. I'm on the go all the
time I never slow down,I get into everything & time out doesn't
work with me, becasue I can't sit still, I try but I can't
S - Screaming is what I do when I can't handle what is going on
around me, when I get upset because I can't sit still I try but
I can't

C - Communication is very hard for me; I may use sign language,
gestures, words,communication boards, time line boards
H - Helping me understand imput is part of my parent's lives 24
hours a day
I - Imagine not being able to hug you child, even though your child
wants to be hugged but your child can't handle it, sometimes
hugs hurt, & sometimes they don't
D - Disabled means doing something different then someone
else,sometimes with aid sometimes with special equipment, &
sometimes with therapy

Saturday, January 01, 2005

thinking about it...

01-01-2005 02:33 PM

The poem by Sally Meyer I posted yesterday.

That is one of the stinkiest things about autism. You are under the impression that everything is just going swimmingly then....
it's not.

Jimmy and I have talked about this aspect of the disorder several times. We have concluded that we are thankful for that year and half of ignorant bliss. It was a good time, unfettered by the burdens of grief and uncertainty. Not to say that that is where we live all the time now, that would be miserable, but there are times when it is pretty hard.

Not a very Happy New Year's salutation.
Sorry. I'm working on it.
  • International Day of Prayer for Autism & Asperger's Syndrome