Our Auti-versary

As every autism parent knows, the beginning of April means that the annual “Autism Awareness Month” is upon us. Each April we bring out our blue light bulbs, puzzle piece door wreaths and wear our myriad of t-shirts, socks, hats and every other piece of autism awareness clothing we can find. But for our family April has another autism related memory – it is the month that the “a” word first entered our family vocabulary.

By early 2013 Collier had several diagnoses under his belt: low muscle tone, sensory processing disorder and apraxia of speech were the main ones. However, we knew that those alone weren’t responsible for everything we were seeing. After several unsatisfactory visits to our pediatrician and months of worrying and praying, our speech therapist finally suggested a local behavioral health organization who would assess him and see what else may have been going on. After filling out about what seemed like 200 pages of questions (you quickly learn to save those things so you’re not constantly trying to remember when he started solid foods or began to crawl…..my brain is so full of special needs acronyms now it’s running out of space) we had an appointment date and were ready to go in.

I’m not sure what I expected on that April morning, but I don’t think it was the word “autism.” Not my Collier. Now granted until this time my autism knowledge was limited to Rain Man and The Big Bang Theory. And my sweet boy wasn’t like that: he was, and still is, a very affectionate kiddo who likes to hug and say “I love you.” He will look you straight in the eye and hates to know he has hurt your feelings. He also has a horrible memory, not at all like the way autistic savants are portrayed in the media. 

So into this center we went for observation, not knowing when we left just a few hours later we would emerge into a different world. As I watched my son that morning, so many things I hadn’t noticed before jumped out at me. The way he would arrange toys in the kitchen center but never actually play with them. The way he would smell and hold everything to his mouth. After a little while I knew we would leave with some additional diagnosis on our shoulders, I just didn’t know which one yet.

Hours later as I sat in this sweet psychologist’s office, she started going over the results with me and my mom who had gone for moral support. As she handed me her letter and findings she started with, “Based on our sessions, I have diagnosed Collier with Pervasive Developmental Disorder-Not Otherwise Specified.” I can only imagine that my face looked like she had suddenly started speaking a foreign language because she stopped and clarified, “That is an autism spectrum diagnosis.”

I’ll be honest with you, I didn’t hear anything for a few minutes after that. The only thing I could hear in my head was autism, autism, autism, autism, AUTISM. A million thoughts went through my head and my body felt numb. It was almost as though I had lost my son, although he was sitting in the chair beside me. I somehow managed to gather her letter, the 28 pages of her evaluation notes, my son and make it to the car.

My mom and I didn’t talk much on that drive home. If I’m honest with you it was one of those drives where you end up at your destination but really have no memory of getting there. After I got Collier settled at home I took out the letter and started to read. It started:

April 1, 2013

I honestly wasn’t able to get any further than that before I sat the letter down and was overcome with the “laughter through tears” emotion. April 1st. Happy April Fools Day, I thought. Maybe this is all a big mistake I thought, just a prank that the universe is playing on us. Those next few days were a blur of anger, devastation, mourning and even more disbelief. 

It has now been seven years since the word “autism” came into our lives. So many things have changed since then, but unchanged is this: I am proud of and love my son more than he will ever know. Even though there are days when I still feel anger and mourn for what could have been, I can say that I look forward to what his future holds and know that God has an incredible plan for him. Happy auti-versary Collier, I wouldn’t change the wonderful kid you are for anything in the world.

~ Amye

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