For those who have read my blog, you are probably aware that The Stin was recently diagnosed with Asperger's Syndrome. Not a huge shock, but a diagnosis none the less.
It's a tricky diagnosis to navigate and he is at an age that makes it even trickier. To tell or not to tell? That was the serious question that The Don and I struggled with for months. We looked to friends, professionals and books for advice and pretty much got different answers all around. So what to do?
Well being that The Stin was aware we went to a doctor and being at such a high-functioning level, I felt like we needed to tell him. Mainly it came down to The Stin is a "rule boy" subtype, he follows rules to a "T" set by people he sees as authorities. We are in a tricky place because he does look at us as authorities of the home, but say with school, his teachers overrule me. If I'm helping him with homework and go against something his teacher said-he's not having it, doesn't believe it and will argue with me about it. Soooooo in this situation, my thought was that the doctor is going to be the authority on a diagnosis, so if we tell him that he did in fact get diagnosed, then we can refer to the doctor and the diagnosis when he is being exceptionally Aspy-ish. As long as I reference the doctor, he should be more inclined to take any advice I might be giving him.
Even though I was pretty confidant in this decision, we still put it off and honestly, didn't know what in the world we were going to say. We tried to figure it out and jot down notes, but this was a hard script to write. We knew we didn't want to use the name Asperger's, A.) It's a weird/funny name and B.) I didn't want to put a label on him. He is first and foremost The Stin and I didn't want to make him feel different. I also didn't want to give him a crutch or excuse...the cartoon Arthur did an episode on Asperger's which The Stin watched with The Ster, the problem is it dealt with trait's that The Stin doesn't display as much. Here is the thing with The Stin, that's his reference point-that's his black and white now, so he would have a really hard time accepting the name or could possibly adjust his traits to fit what was shown on the cartoon-there is no gray with him. So with all that considered, our decision being made, no real reference on how to do this,The Don and I did what we do, took each other's hand, asked Justin to come out back so we could talk, sat down with him, I took the lead and we just spoke the words we felt he needed to hear and deserved to hear.
We reminded him of the appointment, which I had prepped him as a doctor that was going to see if she could help us understand why he has a hard time with people's names, and understanding jokes and talking with his friends at lunch. So after a quick reminder of why we went-which he did remember, we confirmed that she did, in fact agree that these things are and will continue to be hard for him. We told him there was a diagnosis, but the name wasn't important, all we need to focus on is that we, as a family, are all going to have to work harder at learning how to make those situations easier. The Don and I will work hard to be more patient and he will need to continue to work on his socializing skills and trust that we are giving him advice that will help with friendships.
We tried to be slightly "clinical" if you want to call it that and described the diagnosis as basically his brain being wired a little differently, which is why things that come naturally to most kids, like remembering names or getting jokes, are going to be harder for him. With that being said we also made sure to tell him that he might find there are also some things that come really really easy to him, that most of his friends might find difficult. The Don and I have always referred to it as the "vacuum cleaner," we need to find The Stins "vacuum cleaner." Up until now it has been Luigi from Super Mario Bros., and this isn't just a boy liking Luigi, this is an 11-year-old that can identify the exact PMS color for the green needed to correctly color Luigi's hat.
We told him that we will all work at this together and that even though it might be harder for him with the names and friend stuff, it is still important. We focused on how he does really good with rules and routines, so we can use that to help make the tough stuff easier, if we can make certain things rules, he is more likely to "follow" them. We also talked about his "vacuum cleaner," and how we want to know if there is anything he finds really interesting and would like to learn more about so we could provide him with additional information and support. We have slowly watched him be more intrigued by airplanes and science, so we are hoping that Luigi will level out and his focus will transfer to the next area of interest.
As he looked at us, nodding and giving his very common, "OK" confirmation, I worried we weren't drilling any holes in our Corkstin...just floating along. Then The Don took another approach.
"Bud, you kinda have a superpower! We just have to figure out what it is and use it for the forces of good."
Well, there it was...could you do any better than that? Totally at his level, on cue with what he likes and instilling a sense of confidence and pride with this diagnosis...and The Stin smiled. I think some water might have gotten in.
Instead of the usual "OK" his response was: "I've always understood that something was different, but now I understand."
So there it is. I couldn't ask for much more that that. I have in fact referenced this talk and the diagnosis since then and I do think it has helped. It allows me to point out specific behavior and reference a doctor and then we work on a solution to help make that behavior better...and when I say behavior I really mean habits or routines, because that is The Stins struggle, outside the social stuff, breaks in his routine really throw him for a loop. So we write more things down and make lists...build on the strengths we know/have right now and hope that we are slowly instilling some ability to apply these tools on his own, in situations outside the home.
Every day brings a new adventure for me and The Stin or should I say: Rule Boy-follower of the laws set before him. Our current mission is to defeat the evils of middle school... or just work on remembering the correct books for class. Maybe we'll keep saving the world on the to do list for now.
One thing at a time.