Thursday, December 29, 2005

Johnny Knoxville...who knew?

Johnny Knoxville...who knew?

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

Celebrate good times!

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

Monday, December 26, 2005

yeah, yeah, yeah....

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.
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.


really not alone?

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

Sunday, December 25, 2005

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

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. 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!

Tuesday, December 20, 2005

feats of strength

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

Wednesday, December 14, 2005

a holiday 'ha-ha' from Literal Land

'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?
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


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.'

Thursday, December 01, 2005

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

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?
  • International Day of Prayer for Autism & Asperger's Syndrome