Keaton Update

Well, Keaton was finally diagnosed with Asperger's Syndrome. That is the diagnosis that we were expecting, and we are confident that the developmental pediatrician got it right. I wrote before that Asperger's is basically mild autism, but the doctor who diagnosed Keaton described it to me as "autism, but with communication skills". She spent a good amount of time playing with him, testing him, asking me questions, and just watching him. He scored well on his IQ test of sorts, with standard scores being 70-120, and Keaton's scores coming in at 108, 112, and 127. This tells us his cognitive abilities are on the high end of normal, and that his case has much more to do with social skills and sensory integration issues than intelligence. The doctor was floored by his fine motor skills, telling me she had never in 30 years seen a 4 year old copy a star as well as Keaton did.

Anyway, after all her evaluating was done, she simply turned to me and said, "Keaton has Asperger's Syndrome. You didn't cause it, it's just how he was born. Therapies may help a little, a lot, or not at all. Do you have any questions?" Ummm...only about a million. But they are questions that nobody can answer.

So. Now what?

Autism Awareness Day was earlier this week, and I read several articles online that covered many of the issues faced by individuals with disorders, as well as the parents of autistic children. The one that I related to the most was an article written by parents who were troubled by the way others viewed their children. One mother in the article was counseled to tell people who gave her withering looks in the store/doctor's office/church, "This is what autism looks like -- my son has a disability" and then walk away. I can't tell you how many times Keaton's behavior has embarrassed me in public, or how many times I have been on the receiving end of a dirty look during one of his meltdowns.

Now I know every child has tantrums, and nearly every parent has had the wonderful experience of dealing with an irrational child in public. You may have even had the dirty looks and nasty comments that I get with Keaton. But add to that the pain of knowing that your child cannot help it, will likely never be "normal", and that he is being judged and labeled by ignorant people. It is devastating.

What can I do to help protect myself and my child from all of the criticism? I can keep working with his therapists and teachers and doctors to find coping strategies that work for Keaton, and I can try to educate people about what Asperger's looks like -- at least for our family.

To that end (and also to document where we are today), I am going to update many of the things I wrote in my earlier post before we had our diagnosis.

Keaton is now attending a Special Education Pre-K class three days a week in addition to his "regular" preschool. This was a tough decision for us. Was Keaton going to regress being in a classroom full of children with special needs? Wouldn't it be better for him to be with children who WERE developing normally so he can see how typical 4 year olds behave? I was so torn over the decision, and thought I had made a terrible mistake by agreeing to let him go.

But then I went to talk to his teacher, who out of the blue explained to me why Keaton needed to be there. She said, "At the other school, Keaton is expected to sit at a table, do worksheets, and keep quiet. The problem is that Keaton can already read and write, so the worksheets are a waste of time for him. What he needs is encouragement to talk to his peers -- to interact with them, to practice asking them questions about themselves and to learn how to be a friend."

As soon as she said it, I knew she was right. And wouldn't you know it, within a month Keaton has made progress. His speech therapist told me last week that the last 4 sessions in a row have been drastically different. That at first she thought he was just having an "on" day, but it's been a month of great cooperation, increased eye contact, and better conversation.

Keaton is still struggling with his syntax -- "Did you hope you see that whale is grey?". He asks questions all day long that he knows the answer to -- "Is that Harold? Is that Harold? Is he a helicopter? Is Thomas blue? Are these my new shoes? (No) Are these my old shoes? (Yes) Did you tell me they are old shoes? (Yes, Keaton) But are they new? (No Keaton) Just old? (Yes, Keaton)".

I'll be honest. It's maddening some days. I still have to acknowledge EVERY. SINGLE. BUS. we pass on the road, and if I say, "No more talking about buses Keaton", that little boy starts to cry quietly in the car and beg me, "Mommy, PLEASE just say 'Yes Keaton, it's a bus'..."

Keaton is also still struggling with some social skills -- specifically, being interested and/or concerned with other peoples' feelings. It doesn't occur to him naturally that he should ask what anyone else wants to do. He doesn't understand that if it makes HIM sad to have a toy taken by another child that TAKING a toy away makes somebody else sad. This would be typical for a 2 year old, but not for a nearly 5 year old. It makes it very difficult for Keaton to have friends, because other children do not like his constant questions and his lack of interest in their opinions during playtime. He doesn't really get invited to play with anyone, which we understand, but makes us ache for him and the day he realizes he's being left out.

He is making some progress in that department though, and we try to focus on the good bits of news. For example, about 2 weeks ago we had a gorgeous evening and Boone decided to take the kids on a walk while I went for a run. We have a 1 mile loop in our neighborhood, so I ran around the loop, waving to and passing the rest of the family as they walked. When I finished running I joined them to head home, and as I reached down to take Keaton's hand, he looked up at me and said, "How was your run, Mommy?"

I almost cried. I asked Boone if he had coached Keaton to ask the question, and he said "no". It may seem like nothing, but to have him ask how I felt about something I did without being prompted is HUGE. I can't think of a single other time he has asked a similar question. But now I know he can do it, and I have hope that it will become a more regular thing for him.

He is still struggling to follow directions without a lot of repeated prompting. In fact, some days he acts like he isn't hearing us at all. We have had his hearing tested more than once and know that the problem is not with his ears -- it's with his brain. This is probably my biggest concern as far as his ability to succeed in school goes. We are hopeful that he will be able to attend a regular kindergarten class in the fall, but he may need an aide to help him stay on task.

Church is even harder for him. Honestly, it is pretty unreasonable to expect ANY 4 year old to sit quietly through 3 hours of anything (ask my mom how developmentally inappropriate that is), but add Asperger's and you have a nightmare on your hands. Keaton is so stressed out when he comes home from church that he usually collapses onto the floor, pulls his blanket over his head, and sucks his thumb. I feel the same way most of the time. The people, the noise, the sitting still, and the chaos just overload his little brain and he freaks out. The only thing that gets him through it are the people at church who love him. He has a wonderful teacher who is so kind to him it makes me cry. He has adult friends that he runs to (Tina, Chrysta, and Sarah) and talks about all week long. Those people watch out for him and shower him with hugs and high fives, and there is nothing greater for me to witness.

I have never met another child who so easily endears himself to other people. Even with all his difficulties and quirks, Keaton is just intoxicatingly affectionate. People tell me all the time, "I just LOVE that kid to death" and I can tell that they mean it. Perhaps there are people who think Keaton is just an undisciplined, uncooperative child, or that his disability is not a real condition -- to them I would say, "You are missing out on knowing one of the sweetest people you will ever meet. Also, you are stupid. Go to Hell." The mother bear in me gets nasty when someone messes with my kids.

Keaton has his moments, but there is not a mean bone in his body, and he would never dream of hurting anyone or anything. He runs to me to wipe my tears away when I am crying, and will sit in my lap for hours if I let him. He is such a special little spirit that I can't help but be grateful to have him in our home, and I am bursting at the seams proud to be his mother.

All I ask is this: please understand that when my child is misbehaving, it is because his brain cannot process what is going on around him. I am trying my hardest to avoid the things that trigger meldowns for him, but sometimes I cannot control his environment, and he is still learning how to cope with the situations he finds himself in. The last thing I (or any other parent of a developmentally disabled child) need is for you to glare at me, give me advice, or gossip about my child and all the ways you could "fix him" if you were his parent. I would pay money and bring popcorn to watch someone else try to handle Keaton for a day.

Now go read this article (same one I linked to way up there) and for heaven's sake, give Keaton and his parents a break.