What I am speaking about is that moment when your reality comes into full contact with your brain’s coping mechanisms. That moment when your initial reaction is to say, “I don’t belong here.” And then it dawns on you, you are here because you do belong here. This place exists solely for the purpose of serving you and people like you. These places not only treat your physical ailments, but also serve as the location where we finally confront reality, where we begin to understand how much ourlives have changed.
My “I don’t belong here” moment occurred not in a cancer ward, or in a pediatric neurologist’s office, but in the conference room of a hotel. I had already gotten my son’s autism diagnosis a few months prior. So I went to a conference on interventions for educators of autistic children. I was the only father in the room, all the others were women (and a few men) who were aids or special education teachers. I sat through many hours of useful talks and at the end I asked a question, “What does a parent do when the school’s experts are not that good, or need more training?” The expert told me –and I am paraphrasing here, “You have to become your son’s expert. No one is going to be able to do more for him than you and the sooner you stop relying on others, the better it will be for everyone.”
My gut reaction was that “I don’t belong here.” I was between my first and my second post-doc's in marine biology. I had been in training for a dozen years to understand the ocean and its animals and their interactions. I did not study early childhood development, abnormal psychology, or education. I mean I love my children, and I like kids in general, but I never had any interest in special education. I wasn’t about to throw away the last 12 years of hard work to shift into another field. There must be people who have trained as hard in autism as I had in ocean sciences, and these people could serve my child better than I.
Initially that was often the case. But as I studied more, and learned more howto interact with my son, I repeatedly found myself training some of the experts who were coming into my home to work with my son. It has been a long and slow education process, but I finally realize that I do belong here. I owe it to my son to become an expert in his autism and his fragile-x. I had to learn about ABA, and Floortime, and SCERTS, and how to advocate for him legally in a hostile school district. I owe it to himand his community to educate the other kids and parents in his mainstream class.
Welcome to the Morgan’s Dad blog. Here I will attempt to describe my intersection between science and parenthood. I will use my biology skill set to read research papers and report them to parents in plain English. I want to help those parents of other ASD or Fraxa kids make a smoother transition to “here”.