Wednesday, March 05, 2008

My son has autism

Now that I have your attention, let me bring you up to speed.

Around Alex's second birthday, October 2006, Sarah and I decided to explore preschool for Alex. He had a number of symptoms, like speech delay, flapping hands, spinning stuff, repetitive behavior, low social interaction and communication. We got into an early childhood class where Alex got speech therapy and occupational therapy a couple of times per month, and preschool with other kids with similar issues two times per week.

I was finishing up my CS degree at the time and working on my thesis. If I thought about it at all, I basically believed that Alex was just behind, and time the great healer would catch him up.

Alex has always been smart, if a bit uncommunicative at times. He also clearly loves people and has the most fun interacting with us. These boded well to me, so I put the issues on the back burner.

As time went on, we saw Alex respond to his classroom and enjoy school. Sarah read more about autism, including some books. She read the fascinating Born On A Blue Day, the autobiography of an autistic savant. You can watch an hour-long video about this particular guy here. She also read Jenny McCarthy's book about her autistic son, got hooked up with an autistic parents' group, read another book... you get the idea.

We moved last July, and priority 1 was to get Alex into services. We found a nice team in our town who helped get him into preschool. His class is about 80% "norms" and 20% "others": the autistic and fragile-X and antisocial and non-talking children. For Alex, this is really valuable, to be with lots of kids, many of whom are active and talking on schedule. Also, there are a raft of specialized teachers doing speech therapy and special ed and occupational therapy along with the regular ones. Thank God, the school was right around the corner from our house so Sarah could walk him in the mornings while I was at work.

We also put him in an enormous queue for evaluation and diagnosis at a children's hospital. Depending on the results, we could get greater access to services, or perhaps find out that Alex was catching up quickly enough that no extra intervention was required. It took several months to get him in.

This morning, we finally took Alex in to meet with several doctors. They tested his abilities in various ways, exhausting the entire family with questionnaires and performances, and finally gave us the bad news. Alex is officially diagnosed with autism. Among other things, he now qualifies for specialized care, more subsidized therapies from the state, a Medicaid disability waiver, insurance claims, and so on. Sarah and I can have the opportunity to be trained to help Alex at home.

They also gave us the good news, which is that Alex seems to have normal cognitive abilities. He can speak phrases and understand a lot of things. He can do some things quickly, and, the doctors suspect, would have passed more tests if some fundamental issues with paying attention and following directions had been resolved before today.

What this means to me is that there is a well-developed child who wants to connect to the world around him. I almost said "trapped in a X's body", "struggling to get out", but these don't quite catch my meaning.

What I mean is, it is worth fighting to save my son, to give him a high-functioning, healthy life. It is crucial to do it now, it is worth my blood, sweat, and tears.

Normally, I like to be philosophical about things. It implies that you can take a step back, and that if you have a strong opinion, it's because you've considered a thing from many angles, seen it from the inside and the outside, understood the person or idea you disagree with at its strongest. I also think it means your attitude is intellectual, controlled, and cold. This is a strong attitude if you are looking for the truth.

I find it hard to be philosophical in this situation. The doctors failed to talk around the fact that they thought this was crushing bad news. Like that Simpsons episode where Homer runs into the statue and has his jaw wired shut. They give Marge a brochure on Homer's behalf: "So Your Life Is Ruined".

To me, this fatalism is so... fatal. Maybe I'm stupid, but I don't feel like I can responsibly wish reality away, or curl up into a little ball. I am resigned to the name they gave my son. But in the fight for your son's future, there's just no room for detachment.

Your support, your friendship, your prayers, your love. Any or all of the above will be precious to us, going forward.



P.S. I held this one for a little while so we could tell our families first. All this happened on Wednesday.

2 comments:

A said...

Hey! I just left a ridiculously long comment on Sarah's blog, including information about books I'm reading, including Born on a Blue Day! I really, really liked "Look Me in the Eye" by John Elder Robison about growing up with Aspergers Syndrome. You said that the cognitive parts of the test shows you that your son wants to communicate (or something like that) and it reminded me of that book. John Elder really wanted to communicate and have friends, but didn't know how. He objects to people saying that people with Autism don't want to be a part of this world, or whatever, and talks about all of the rules and norms he had to learn to be able to do that! He is married (2nd) and has a son. I was fascinated by this book and couldn't put it down! Very great writer! It let me in to his mind to see a whole new perspective!

I hope that you guys are able to see God's hand in all of this. All of the resources I've seen are secular, but I know that God is in this too!

Love to you all,
Amanda

vince said...

Thank you for sharing this. Happy to know you are a 'blood, sweat, and tears' type-of-guy when it comes to loving your family. (It always showed.)

I am praying now that God will bless your efforts with supernatural results.