Way back when Jake was first diagnosed with autism spectrum disorder, my biggest fear was that he’d be ostracized by his peers and feel alone.
We worked very hard to make sure that didn’t happen. Beth, in particular as stay at home Mom, worked diligently to make sure the kids in Jake’s class knew what was up with him, knew how to approach him, and even made social stories with pictures of his classmates to help him be a better friend.
It worked. Jake is accepted by his peers, and feels comfortable around them. His classmates look out for him and they tolerate his eccentricities. I could only be happier if he had (or was capable of having) close friendships.
Life in those first dozen years or so was easy. Of course we didn’t realize it then, but it was. Maybe easy isn’t the right word, but certainly simple. Our expectations were clear. Jake was blissfully unaware of his disability, and his intellectual impairments spelled out a clear life plan. He would be as independent as we could make him, and he would live with us for the duration. Olivia even came up with a plan to care for him when we die. She’s all heart, and her big brother has his own special place in it.
But puberty has shaken things up. It’s made things harder. Again with the easy/hard. Maybe more complex is a better descriptor. The gap has shrunk. He’s become more and more aware of the differences between himself and his peers. He’s not capable of fully understanding what that gap represents, and maybe that’s the struggle with this gray area.
For instance, he desperately wants to get his driver’s license. We’ve gone over the idea that not all kids get theirs at the same time. Some kids are older than 16 when they get one. He’ll have to pass a written and road test when the time comes that he’s ready to try. Now that he’s in high school, he sees other kids driving. He wants to be just like them, and why shouldn’t he?
He also really wants to be a videographer. Again, he only gets a part of this. He wants to videotape himself doing what he loves and post it to YouTube for a living. Maybe he’ll be successful. He wants to go to college from home if possible, and especially if he can be done in time to pick up the kids from school with his driver’s license. We’ve tried to get him to make how-to videos for the kids in the elementary school, but he has no interest in filming for somebody else. Videography in the real world will be hard if he won’t take jobs.
He tells me he wants to go to college, get a job, find a wife, and maybe even have kids. He wants to do this all while living with his mother and I at home.
Now I don’t want to be maudlin, but how is this kid going to get a driver’s license? He’s a whiz at MarioKart, and (sshhh!) he’s pretty decent on abandoned dirt roads, but in a real life situation with ever-changing conditions and other drivers? Yikes! His triennial testing was recently completed by his speech therapist, occupational therapist, developmental pediatrician and clinical psychologist. He’s still quite impaired in terms of problem solving, higher order thinking, and comprehension of written and verbal language.
How do you foster the idea that “you can do anything if you put your mind to it” when it’s obviously not true?
Two years ago, I wouldn’t have believed you that he’d come this far. I’m hopeful that I can’t envision where he’ll be in two more years, but there’s no guarantee. In three years, he’ll be graduating high school (hopefully). The clock is ticking.
Maybe our bar was set too low. I don’t think that’s what it is. I think we make adjustments to the “bar” as often as he makes gains. Maybe this time the bar just moved really quickly, and seemingly too high. Maybe the difficulty is in seeing the possibility of a world without Jake under our roof. I admit that scares me. But, as always, his goals are our goals. And as always, Churchill put it best: