They say most people know a family who has been touched with autism. If you didn’t before, you do now. We are that family.
C was diagnosed with autism spectrum disorder. Under the old DSM IV, he would have been classified under Asperger’s or high functioning. He is severe in areas of rigidity (fixations and needing things to be his way) and social interaction. It was suggested that a center-based intensive therapy might be best for him so that he is around peers instead of one-on-one with an adult. The Early Start Denver Model was suggested as best for him as a developmental approach. Now comes more work on my part to speak with insurance, interview clinics and find the best fit for his needs.
There are some things that make more sense now. He has so much anxiety because he doesn’t understand social situations or changes in routine. He can go on and on about cars and trucks or recite an entire episode of Bob the Builder before bed, but he can’t seem to tell me when he needs to use the bathroom. His accidents have increased. I had been so frustrated with him for this regression, but now the cause is clear. When he acts like he is ignoring me, or doesn’t seem to understand a simple direction, there’s no reason to get frustrated anymore.
When she said it, I started crying. I knew it; but when I heard a professional say that word, it felt heavy, overwhelming and sad. There was instant relief that the doors would open for the therapy he needs. There was instant grief over the childhood that we all picture for our kids. When I said I was thinking about his future and started to cry, she jumped in to say that she is very optimistic about his future. She pictures him as a computer programmer or something similar, with a family. I laughed, “Who people think is a little weird!” She said, “Exactly! There are a lot of people like that. I’m married to one!” It was a welcome break in the tension, and the hope I needed to hear.
His childhood won’t be easy. We may have difficulty getting help for him in school, because he does have a mild form of autism. We don’t know if his development will be steady, but at a slower rate than his peers; or if he will be continually behind and fight to catch up briefly, only to fall behind again. She’s concerned about his language and we will need to pay close attention to language development over the next few years.
This is the first time I have sat down this morning. I rushed around the apartment, cleaning and organizing for three hours. I need to keep moving. What I really desire is to hide in my bed for a few days, watch a Law & Order: SVU marathon, eat ice cream and cry. I don’t have time for that. Because, motherhood. So I’m going to run around, cleaning and focusing on making those next step decisions. Because, survival.
When I stop moving, the sadness creeps into my heart.
But there’s no time to stop. I am an autism mom now. I’m going to keep moving, keep researching and advocate the shit outta this. That’s the person C has made me and I wouldn’t have it any other way.