It’s been just over 3 years since our second son, Andreas, was diagnosed with autism. He’s 8.5 now and in grade 3. He is doing well. Math is his spirit animal. His teacher was recently fist pumping with joy as she explained that she has been catching him reading books in his lap when he’s supposed to be paying attention. Why is this good? Because boy wonder was hitting junior high reading level in grade 1, despite the fact that reading was not his favorite. You’d expect a kid that advanced to be a book worm, but nope. He read when he had to. Now he sneaks books in class and that is a real cause for celebration. Geology and animals are topics of great interest, and he’s recently become enthusiastic about research projects. (Seriously, if I hear one more word about Andean condors I might actually spontaneously combust.) His teacher hit the jackpot this year by providing him with an alpha smart to do his writing with. Writing is tiresome and he pretty much hates it. Last year he had a teacher tell him that he had to write 1 sentence before going home. He wrote, “Miss Teacher school sucks I want to go home.” She wasn’t impressed but hey, a sentence is a sentence and he used his to make a point. Well done. Now, with the alpha smart he is typing pages at a time. This all sounds really wonderful, and it is.
What I want people to be aware of on Autism Awareness Day, is that the wonderful things and the moments to celebrate? They come with a lot of hard work. Andreas doesn’t even realize how hard he is working, because this is his normal. It’s our normal. And sometimes that makes me really mad for him.
A couple months into last school year (grade 2) I honestly thought I was going to have to pull him out of school and home school him. It was so bad that he was shutting down completely every day. He hated school. He was miserable. This was not like him and we were distraught. Our happy boy was sad all the time and people around us were starting to notice too. I had had enough when I was told he was being placed into literacy support. What the boy who was reading at junior high level needed was not literacy support to get him to read a bunch of boring fairy tales because “that’s the grade 2 curriculum.” He needed to be able to be himself and that wasn’t happening. Everything he did was “wrong” and he was responding accordingly. After one very ticked off email on my part, the school took action. The principal stepped in, and put him into a different classroom. That day he came home from school and I told him the good news. He said nothing. But he gave me the happiest smile I’d seen in a very long time.
I’ve never shared that online because it was so upsetting for such a long time. The teacher he had did have a part to play in it, but she was also a first year teacher who had learned “strategies” for autism, but never had to implement them with a child like Andreas. The school had not prepared her for the complexity of a 2e (twice exceptional) child. The principal actually acknowledged this, took responsibility, and apologized to me. She also used it as a learning experience for the teacher – who is not a bad teacher – and the school. Going back though, twice exceptional refers to a child who is BOTH gifted and on the autism spectrum or having adhd or learning disabled in some other way. Sometimes Andreas being as bright as he is, causes people to question the challenges he has. Other times, him being on the spectrum causes people to question the gifts that he has. We are always walking a line for him. It is exhausting, complex, and more rewarding than I ever thought possible.
After he switched classes last year, everything changed overnight. The rest of the year was positive and we got our boy back. I was terribly anxious at the beginning of this year though. We did not want a repeat of trial and error with classroom placement. Not just for our sakes, or Andreas, but because I didn’t want another teacher to go through what that one did. I want to acknowledge that the whole situation was terribly upsetting for her as well. The school really had learned though, and as I noted above, I’ve got his teacher reporting that he’s writing pages and pages, loving research, doing math enrichment, and hiding books in his lap when he’s supposed to be learning.
There are other challenges. Socially things are changing as his peer group is growing up and this has been difficult. We convinced him to join the after school ultimate frisbee club with his older brother Mateo this spring. I think it’ll be good for him to do something fun with his friends, that is also structured and supervised. He may love it or he may hate it, but he’s trying it. Things like that are so brave for a kid who is not athletic and not a social butterfly and who comes home from school every day in a rush to put his pajamas on and be alone.
There are surprises. Last summer Rosalie was being terrorized by a housefly. The sounds of her shrieking could be heard far and wide. Andreas found this terribly distressing. I suspect her shrieking was bothering him more than anything else, because it motivated him to come up with a solution to get rid of the fly.
Now that’s a fly trap. It didn’t work. We eventually had to swat that fly dead, but his heart was in the right place. He’s valiant in his own way.
There are breakthroughs. It is no secret that Andreas and Oliver are not just different, they’re almost in opposition to each other. Andreas craves order, quiet, and routine. Olivier needs chaos, noise, and surprises. As a parent, meeting each of their needs at the same time is like being a magician. Everything is an illusion. I had been praying for them to find common ground. For my own sanity as much as for their relationship. And then it happened. Olivier is all about dinosaurs. One fine day it occurred to Andreas that geology (his science of choice) and paleontology (Olivier’s science of choice) are sciences that go together and all of a sudden they’ve got common ground. It was like watching a miracle.
We have a funny little life with our funny little kids. Autism is a spectrum and we have a whole spectrum of ups and downs happening in our lives with Andreas. He has taught us more than we’ve taught him. I suspect that’s what happens in many families that include people with special needs. Because we have to pay attention to every little thing, we get to really see and experience every little thing. It is a gift. A friend made the comment that to know Andreas is to love him. She wasn’t the first person to say that.
Autism. 3 years ago I was focused on what brought us to that word. Now I am focused on where that word is taking us. I admitted that sometimes the challenges make me mad for Andreas. Nobody wants to see their kid struggle and be misunderstood. At the same time, I’m thankful for every hard lesson he’s learned or that we’ve learned as a family. It’s made us more steadfast in our love and determination. It’s made him more brave than he knows right now. I can’t wish that away. What I do wish for him, with everything in me, is that he would take this exceptional life he’s been given and live it well. And I wish very much that the world will get out of the way and let him.
copyright (c) 2016 Jenna Pelias // all rights reserved