After posting about C’s new autism diagnosis, I stepped back from this space not knowing what to say next. I wallowed yesterday. I didn’t shower until the afternoon. I skipped my scheduled run for half marathon training. I stayed home from my weekly church growth group in favor of fuzzy socks and Chinese food takeout.
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.
Do you ever feel like things are about to change in a big way? Like something big is about to happen and life will never be quite the same again? I felt this way before my wedding day. There was a similar feeling when I went to the hospital in labor with C, and when those two lines appeared and we discovered we would have Baby Jo. Our family is on the threshold of change and it is making me anxious.
Grinding his teeth, growling with his hands clenched, C came at me. On exceptionally difficult days, he is like a lion on the prowl, ready to strike at any moment. Like a lion’s prey, we need to be on constant alert as we wait for him to strike. That strike comes in different forms: hitting, head butting, squeezing, scratching or biting.
You may have gotten this from my posts about fear and the autism clinic last week, but the truth is I’m struggling. Special needs parenting is kicking my butt in a whole new way. I knew C would have a difficult time transitioning to preschool. I didn’t expect to see him lose skills and independence. I didn’t anticipate that he would get a cold and end up vomiting so many times that he hasn’t kept a full tube feeding down in days. Yes, vomiting from a cold; because that’s how his life is as a tubie.
Whenever I hear parents extraneously worrying about a child’s aches, pains or viruses, I find myself wishing that the fear in which I operate was that simple. For me, fear is the accomplice of special needs parenting. I may not want it to be there. I may not like it there. But, it’s there.