10 years ago we sat at a large round table in an unfamiliar elementary school. “This is your team,” explained the family case worker. I’d come to know her very well over the previous months. When my son started the Head Start program, she was the one who reached out to me when concerns about “abnormalities” became obvious and, subsequently, the desire to test my son.
We had spent weeks testing and observing behavior in various situations. At this point in my life, he was my only child. He was quirky but loving and fun! Sure, it was a little odd when he would line up his toys across the floor and then meltdown when one wouldn’t hold it’s position, but he was so engaged with the activity that I found it impressive. Sometimes he would spin in place for what felt like an eternity, a process that couldn’t be interrupted. Clothing was always an issue, tags bothered him and socks/shoes were always “too tight” despite the size. The other differences weren’t as obvious until he was among his peers.
All of it led to this moment. All the tests, meetings, and phone calls defined with a classification. “Mrs. Miller, your son is Autistic.” The room froze with everyone focused on me and I realized they needed a reaction. Cayden was playing on the chair next to me, strategically putting a puzzle together. I had learned that he loved puzzles and I bought a truckload for him to play with. Once he solved the puzzle, he could put it together in record time, and then he’d abandon that puzzle and move to the next. The puzzle he had been working on had a couple of challenging pieces and I watched as he rotated the last couple of pieces into various ways, trying to make it fit. I shuffled his moppy hair and he looked up and gave me his obligatory smile before getting back to the puzzle.
“OK, what’s next? What do we need to do?”
We discussed a strategy, various therapies, and modifications for school. We signed a lot of papers and walked out the door. As I was putting my son in his car seat, the case worker met me at my car, “I just wanted to make sure you’re ok. Most parents get pretty emotional and you seem to be handling this really well.”
“This diagnosis doesn’t change the fact that he is my son. He is the same boy who walked in that office as the one who walked out. This just better helps us know how to provide him with what he needs.”
After this, she had me talk to several families who were struggling with this life-defining diagnosis, some afraid to begin the testing process. It’s not easy to allow a system to attach a label on to your child, however I had decided that it would be far more challenging to fight the system to bend to the needs of my child without it. Either way, it’s challenging.
We had decided early on that we weren’t going to tell our son, in an attempt to let him gauge normal on what “normal” was to him. I never wanted him to use this diagnosis as an excuse to fail or, even worse, not try. However, as the years passed the dialogue changed.
What is normal? In our world, normal is:
- Baggy socks, turned inside out
- Soft, tagless t-shirts
- Breakdowns over touching dirty dishes
- Dealing with bullies
- Anxiety over leaving the home or playing outside, because of past interactions with neighbors.
- Anxiety of wanting to have connections with people but not understanding why the connection isn’t there.
- Inability to make eye contact in stressful situations (when most adults demand it)
- Stuck on the same thought process for days at a time…he has the memory of an elephant.
- Daily phone calls to/from school. There’s never a dull moment.
- Social anxiety.
- Depression from “feeling different.”
- Friends/neighbors who aren’t allowed to interact with him.
- Abusive teachers.
- AMAZING teachers!
- Escalating from zero to sixty faster than any sports car, for a variety of reasons – may the odds be ever in your favor figuring out why.
- Daily/hourly pep talks to get through the day.
- Dreading changes in school schedules, including substitute teachers (who are typically not trained) and assemblies, or anything messing with the lunch schedule.
- Changing our parenting approach over and over again, to find the one that reaches him.
Someone amazing told me if you’ve met one person on the autism spectrum, then you’ve met one person on the autism spectrum. Autism is defined by a spectrum of characteristics and while one thing may be present in one child, it may not be present in another.
Some amazing things that are also our normal:
- He sees the world as a movie and is constantly creating new ones in his mind.
- He’s ultra-aware of others emotions and perceptions. If I’m having a hard day, he’s eager to give me a hug. He’s also very aware when someone doesn’t like him and he’s usually right.
- He seeks out affection, something that is unique from what others perceive Autism is.
- He contemplates theories of Science and creates his own.
- He can solve puzzles faster than most, which makes him an excellent game partner.
- He loves art. He appreciates art and sees the stories that are untold.
- He’s the definition of loyal.
- He can tell you what he got for Chrtistmas when he was 3 years old, the conversation we had about that one thing when he was 5, and who directed all his favorite movies, who acted in it and what other films they’ve been in, what the critic reviews are, what year it wrapped, and why the director cut a certain scene. But, he can’t remember to tie his shoes.
More importantly, while I have shed numerous tears, pulled my hair out in frustration and know without any level of uncertainty that there will be more tears and more hair pulling; this kid is going to do great things!
His gift, albeit in a form of a diagnosis, is to view life in a way that most are incapable of doing. It’s a beautiful thing, trapped in the world’s perception of what autism is. Throughout this journey, we’ve met many other families that have been touched by others on the spectrum. Some high-functioning and some non-functioning, each with their own incredible story. None easy.
As a parent, I pray for easier days. I pray for things that can be done without upheaval, aside from xbox and movie making. I pray for positive relationships. I pray for him to see how amazing he is. Above all of this, I pray for society to become educated and tolerant. Until then, we’ll just keep moving the puzzle pieces around until they fit.