In honor of Autism Awareness Month, I thought I would write a little about our journey to getting Firstborn's diagnosis.
Looking back on things now, the warning signs were all there, but I didn't see them. To use a metaphor, I didn't know all the things I was seeing with my son were all pieces of a bigger puzzle. The Autism puzzle.
When Firstborn was about eighteen months, it is apparent to me now that he took us quite literally at our word. We would play a game where he would put his blanket over his head and we would say, "Where is firstborn? Where is he? I don't see him. I can't find him." He would then pull the blanket off of his head and we would act surprised he was there. We would all giggle and laugh and have fun. We thought he would perceive this as a game since Firstborn had reached the milestone where he could find an object we would hide under a pillow.
One day when we were watching a friend's very active toddler, Firstborn was getting visibly overwhelmed. He climbed onto our couch and put his blanket over his head. The little boy climbed the couch as well and proceeded to shower Firstborn with lots and lots of attention. The look on Firstborn's face was one of utter bewilderment. Why hadn't the blanket trick worked? Why was this little boy still engaging him?
When Firstborn's diet became more and more restrictive, we wrote it off as being a really picky eater. Everyone assured us he would outgrow it. The fact that he cried, gagged and sometimes threw up when presented with new foods or textures was all a part of that pickiness. It was weird that my kid cried when I offered chocolate ice cream, but that was all. Firstborn was also able to discern real Cheerios from the generic kind--even if I hid the generic kind in a Cheerios box. He would gag and throw up if I tried to make him take a bite of them after he discovered the difference. He loved pepperoni pizza and the flavor the pepperoni left on the crust, but would not actually eat the pepperoni. If a texture was wrong on even a favorite food (stale, mushy, etc) he would gag and throw up.
We had other red flags too. Firstborn would cover his ears in situations most people would not. We took him to see movie, "Thomas and the Magic Railroad". He absolutely loved Thomas, but spent the entire movie covering his ears. He also covered his ears the very first time we went on " it's a Small World" at Disneyland. Storms have always terrified him.
Firstborn also lined up his cars and would spin the wheels. I thought he was organizing his cars.
He engaged in a lot of parallel play, but was often in the sidelines watching. He didn't seem to enjoy talking to other kids as much as he enjoyed talking to adults. I thought he was just shy.
When he asked to watch a video, he always called it by its full name. He would ask to watch, "Cinderella II: Dreams Come True" instead of just Cinderella II.
We used to have a cling map of the United States we put on our fridge. The map had labels for the states and each week we learned a new state. At three He was better at naming all the states than his high school babysitter.
Firstborn also did not deal with frustrations well. He would shut down and cry or completely freak out in what he perceived as a crisis situation (like if the milk spilled). It was hard for me to tell there was any difference between toddler/preschooler frustration levels and those of someone with more challenges.
When he was a little older he had a lot of anxiety related to school and making friends. In encouraging him to talk to new kids, I asked him, "What is the worst thing that could realistically happen if you talk to them and ask if they want to be your friend?" To which he answered, "They'll want to kill me."
We've worked through some of his anxieties, but as I have learned, sometimes anxiety can sneak back into your life, even when you know it is illogical to feel that way.
As he got older he began attending Cub Scouts. His Wolf Den leader is the one who first spoke to me about the possibility Firstborn might be on the Autism spectrum with Aspergers.
My first reaction I will admit was anger. How could she suggest anything was wrong with my child? He was shy, not Autistic. He could talk to adults just fine, he made eye contact, and he had one on one friends.
When I was younger I had the opportunity to hear Kim Peek, who was the inspiration for the movie, "Rainman" and his father speak at a conference. I did not see any resemblance between Kim and my son.
How little did I know that every person on the Autism spectrum has their own unique set of challenges.
When I calmed down I did some research and began to realize more and more that Firstborn probably had Aspergers. I talked to the school counselor and psychologist. They agreed Firstborn had several traits of having Aspergers. I expressed my apprehensions about labeling and therefore limiting my child. They were happy to comply.
We did get and had been getting supports for Firstborn in the form of individual
Coaching/counseling, small social group meetings, allowances from teachers for extra testing time or verbal testing (he was such a perfectionist he wouldn't write down his answers if he could not make it perfect. It wasn't until his teacher began to verbally quiz him we understood this).
Yet because of my fear and ignorance, I didn't get things written down in any official capacity like a 504 or IEP.
I wish I knew then what I know now.
More of Firstborn's story on another day.