The First 100 Days of Autism

It’s not that I haven’t wanted to write here, it’s just that I let too many days go by, and there’s too much to say. Sitting down and tackling it all is a bigger challenge each day, and each day I feel a little less up to it. But here’s a start.

When a kid is diagnosed with autism, the parents are usually given a book called The First 100 Days Kit, put together by an organization called Autism Speaks.

Lively was diagnosed around 80 days ago, if my calculations are correct, and I haven’t cracked the book yet. OK, I cracked it, skimmed it, and put it away.

Perhaps the kit would be better named the Second 100 Days of Autism, especially if many parents respond the way to this diagnosis that I have – with denial. I will, I’m sure, spend at least the rest of the first 100 days trying to convince myself that Lively is not, in fact, autistic.

These are the reasons to which I am clinging today:

1. He had a stroke, so his developmental delays are due to that, not autism.
2. Lively spent 3 months on a drug that halted his development. Then he got sick, maybe because of the drug, and spent another several months in the hospital, including intubated for weeks In the ICU. So development was halted by non-autism medical issues.
3. He’s probably not talking because his stroke affected his speech centers in his brain, not because of autism.
4. He makes great eye contact and is very engaged, so not autistic.
5. He’s making developmental progress.
6. He gives hugs and kisses.
7. After everything that has happened, surely to God this can’t happen too.
   

Lively’s Early Intervention providers, however, are not on the same page.

Lively gets services through the Ann Arbor Public School system through Early On, at the Ann Arbor Preschool. There, they have 5 (!) preschool classes for autistic kids. These are just for 3 and 4 year olds living in Ann Arbor who have already been diagnosed with autism. 5 classes. Lively’s occupational therapist told me that in rare circumstances, if a kid is really in need of intensive intervention, he can start in one of these preschool classes at age 2 ½ instead of waiting until age 3. It took me a few weeks to realize that she was talking about Lively. In need of intensive intervention. Don’t wait until age 3. Start now.

Lively turns 2 in 2 weeks. So he will probably start at the preschool in January, 5 hours a day, 5 days a week. The first class is a “level 1”, where the kids have to be 1 on 1 with their teachers because they’re not able to communicate enough or work well enough with other kids to be in a group setting. There are level 2 and 3 classes, where kids are able to function progressively better in classroom settings, and hopefully Lively’s functioning will improve enough that he’s able to move through the levels.

It was a shock to me to realize that Lively would even qualify for this kind of intervention. I’m barely able to admit that Lively might have autism, much less that he is severely impaired and low-functioning enough to be put on the fast track for these special services.

I can’t even begin to start to explain how all of this has changed my life. I worry about Lively every waking hour of every day. I worry so much, that I think it’s making me sick – I have had this silly cold that has hung on for weeks and has now progressed to bronchitis requiring oral and inhaled steroids and breathing treatments every 4 hours. I’ve never wheezed once in my life, and now (literally, right now) I’m breathing nebulized albuterol. It’s not actually unusual for me to be a stress case – I mean, most people who are dumb enough to think that going to medical school is a good idea have enough type A in them that they have their share of migraines, but really, my lungs have stopped working. I’ve never really believed that stress could affect me this way, and I’ve never put much stock in naturopathic medicine (Why do they call it alternative medicine? Because if anyone could prove that it worked, they’d call it medicine!) but I feel the need to take some vitamins and perhaps find a meditation retreat in the mountains somewhere. Trust me, I’m crazy enough right now without adding 60 mg of prednisone each day into the mix.

Goal number next, in an effort to be positive, is to try to enter Lively's accomplishment of the day as a blog entry, on a semi-daily basis. My idea is that if I do this, I can look back and really see his progress, and progress always makes me feel a bit more hopeful. Yes, I'm the same person who vowed to blog weekly and then took 3 months off. But it's good to have goals, right?