World number two….
My son, Colt, is about to turn 13 and is on the Autism Spectrum – mid to low functioning in areas of cognitive ability and social skills. He’s going to be in his last year of elementary school next year and we’re buzzing around, trying to get all the necessary testing done through all the different resources to ensure we apply for the right and best suited route for him to enter high school. This is just eating me alive…. First, he won’t be in the same school as any of the kids he’s grown up with. They protect him and know him so well….his classmates accept his disability and they all go out of their way to accommodate his needs. He is loved, cared for and about and he feels he belongs there…..and it’s all going to come to a crashing halt when he enters the high school system.
Now, I know this boy like I know my own heart and I am not letting test results dictate the way I feel about him or the future I hope he might one day have, but wow guys…his testing is not easy to digest. Communication is terrifyingly low….he is testing at the 1st percentile for receptive language and he’s not even on the chart for expressive. This means, essentially, that Colt understands almost nothing that is said to him unless he has a reference point from the past that dictates an appropriate response. For example, when we tell him how much we love him and how much he means to us and our little family, he knows that it means something good. We are sharing our hearts with him and letting him know that he belongs and is loved and needed. His developed response to that is to engage us in the same way. He tells us he loves us too and repeats things he’s heard before like:
“I will love you no matter what.”
“I will always be here for you and will always sick up for you when things get rough.”
“I will fight for what is best for you and for what makes you happy.”
“You mean the world to me.”
“You are perfect just the way you are.”
“I carry you me in my heart everywhere I go.”
“The best part of my day is when I get to come pick you up and take you home.”
“I will never stop loving you.”
He echoes the sentiments we’ve tried to get across to him for his entire life and he knows that they mean good things….they mean we love him and accept him. He repeats them back to us because he feels the same but doesn’t know how else to say it.
At school, there are clear expectations. He knows exactly what he is supposed to do and when he is supposed to do it. He’s had years of visual schedules and (hard fought) EA’s to help guide him along. He has people telling him exactly what he needs to do and what the consequences are if he doesn’t comply. He chooses to do the things asked of him only because he’s learned that things go much easier and happier when he complies. To me, this feels like he’s learned action and consequence and the importance of doing what he is asked to/needs to do in the world – as far as the tests are concerned, it means he’s just learned to parrot back the responses that get everyone to leave him alone the quickest.
I KNOW he’s learned a lot. I know he has empathy (something many autistic people struggle with) in spades and he’s learning how to cope with it and use it to help others. He takes pride in doing something kind for someone else. He cares about his dad and I and goes out of his way to do things to make us happy or to lighten our loud. Right now, I can hear him in the kitchen asking his dad how work was and when Dayne provides a short “it was fine” answer, Colt probes for more.
“No dad. How did things go at work for real? Did anyone make you feel happy? Frustrated? Was your boss in a good mood?”
He’s trying. Right? He’s trying to connect using the tools he’s learned through people trying to connect with him. That’s how all humans do it….just maybe a little more on instinct than Colt does. He needs to be shown exactly how something works before he understands it. He needs to be given the tools. If he’s asked a question he doesn’t know the answer to, he bursts into tears. If he’s asked something he can connect a memory to that turned out well, he defaults there.
For most of his life, he has clung to happy experiences. The first Christmas he can remember has been the default until the last few years. He asked for certain things (not really understanding, but we knew what he favoured and enjoyed playing with, of course) and he was delighted when he got to open presents that contained amazing things that made him happy. Every single Christmas to follow, he asked for an exact repeat of that first one. He wanted the same toys, the same books, the same experience. It was just the last few years he’s been able to expand his requests to include new interests. Shit, we’ve only been able to get him to be okay with a Christmas tree in the house for a few of them. (TREES DO NOT GO IN THE HOUSE!)
So, I’m stuck, staring at these reports and tax forms (thank you Ontario Government for taking away all our disability tax breaks by the way) that read so dismally, telling me that my son is “profoundly disabled” and that his is in danger of harming himself because he may appear to understand some very important instruction you’ve given him, but really, it’s just gibberish to him if he has no reference point from the past.
As a mom, I want what’s best for him. As a mom, I had hoped we could enroll him into the ASD program at our local high schools. They have a system where the kids go to regular classes, pickup their work and then may choose to go to a specified quiet room to get assistance from an EA. Colt is nowhere near that level of independence at school. He can barely complete a simple task unless someone is directly beside him, guiding the process.
Test results don’t show his emotional and personal growth. Test results do not define his abilities and the things he can do now or might be able to do in the future. I guess the fact that I hate so much to face, is that things are not normal for him. I mean, we know this….of course, but we have established a nice little routine that works and we love this child exactly as he is. Sadly, I’m not sure he’s going to fit into cube the school wants to shove him into and he’s going to be put into a program that doesn’t benefit him and his potential. Then again – I couldn’t care less if he graduates high school, goes onto to continue education, gets a job as a deep-sea diver or barely manages to hang onto a paper route throughout his life. I just want what is best and I don’t know what is best and it eats me up.
Day by day, I suppose. We’ve never had the benefit of being able to plan very far into the future for Colt and it’s nothing different now. I guess we just keep going on instinct. So far, we’ve raised a considerate, sweet, loving, strong, opinionated, polite, kind and beautiful boy…..we can’t be doing all that poorly. Everyone who knows him loves him and he pays it back tenfold. If we can just help him through puberty and into adulthood, who knows what he will be able to do. Once, he couldn’t tolerate the sensation of grass on his bare skin and now he independently rides a riding lawnmower all around our property, shifting, lifting and dropping the blade….he even parks the thing perfectly and safely. The tests make all his gains feel invalid or wrong…but they’re not. It’s just a matter of getting our head’s around it, I suppose, and getting over our own terrible fear of change for him. He actually adapts better to life than I do….lol.
I thought it would get easier, being his mom. I thought knowing him better and having him able to express his thoughts, wants and needs to me would help. It did help….does help…but I still don’t know what the hell I’m doing. Just hoping against hope that I make the right choices for him until he can make them for himself.
We meet with the school in June and will combine all of our reports and test run by them, his psychology team and by us from the perspective as his parents. They will let us know which stream he can apply to join – the ASD program or the other one that will focus more on life skills and safety. I guess we’ll know then, what the next few years will look like and can go from there.
To end on a lighter note – at his last meeting/session with his psychiatrist the doc asked him what he wanted to be when he grew up. Colt paused, panicking a bit, unsure of the answer. He looked at me for some help and I smiled….told him he could pick anything he could imagine in his head as being a fun job to do. His answer?
“Yeah, you know, I was thinking I’d just live with these guys and not really have to go to work that much.” with a thumb over his shoulder gesturing back to where his dad and I were sitting.
Dayne laughed and said he was welcome to stay forever, but as far as a job went, cutting the lawn every weekend could count. lol.
Is it weird that I wish I’d had more kids so much and am simultaneously so relieved that we stopped at one? I wish he had siblings but I also love the fact that he gets all of us and every drop of love we have in us (and there is a LOT of it, when it comes to this magical little boy who is rapidly outgrowing his clothing).
So. There’s that part. Onto part three….