It’s freaking me out a little bit, because that question I’ve gotten from so many people for years, YEARS (like when he was 5 with a freshly official autism diagnosis) of “what do you expect his life to be like as an adult” is just one year away. I’ve had the luxury (luxury? can that exist with an autism diagnosis?) of putting that question off for years because most days we’re just trying to figure out what the next few hours are going to look like. But October 5 has come and gone and here we are!
Yes, I know that “adult” is a loaded word (when is one truly an adult? when they go to college? move out of the house? get their first job when they’re not in their parents’ house?) but right now what’s on my radar is what “adult” looks like legally and that means that I need to start legal things happening. The school system we’ve navigated and figured out and become dependent on won’t be around for much longer (J technically can still attend school until he’s 21) and we need to figure out how to get services in a whole different way. I’ll keep you posted on that. I feel like it’s this opaque black hole. Unlike early education (where I knew other parents and adult professionals on a social level who kind of helped steer me in navigating the early intervention/special education services) I know no one who has gone through the adult special needs process. So stay tuned, I’ll keep you updated on what that whole process looks like.
But back to this last week and all the things we’re trying NOW to help J get more and more independent.
The bike: J has gotten really good at getting around our neighbourhood on his own with a big thanks to XC. One of the coaches told me way back when I was shadowing J that all the kids get to know the neighborhoods and Northside Fargo really well through XC and when they start driving, kids will say, “I totally know where to get to x,y,z because we run past there on our runs.”
J doesn’t drive a car, but he can navigate the neighbourhood and Northside area really well on his bike (thank you XC!) so in the last week and a half of XC, we’ve decided to change something up.
All summer he got himself home from his weight training class. Since J has 8 period open this semester, I thought J could get practice getting to XC on his own. It would be a good exercise in planning ahead when to leave and factoring how long it takes to get there. The first day J walked and we totally misjudged the time it would take to get there and he was 10 min late. After that J biked and got there on time, but he still struggles with locking up his bike. Big kudos to Coach L because he’s been there to help J every single day. We are so lucky to have such supportive coaches and teachers helping out J!
The phone: J has been wanting his own phone for ages. We’ve always said no because he has such an obsessive/compulsive/anxious personality. And as most of us know, you don’t have to struggle with anxiety to have electronic device addiction issues. Most kids J’s age are prone to electronic device addiction issues. A year or two ago, we played with giving J my old iPhone 4 and using the home WiFi and that worked for a couple of months until the new iOS updates would no longer install on the iPhone 4.
So for his birthday we took the plunge. He has a real phone now with a real number and we put ALL the restrictions on (even a 5 min restriction on the calculator app). For the first day (Saturday) we gave him unlimited phone time, just to see how he’d respond to it, and sure enough, he became a little anxious/obsessive by the end of the night. Sunday we gave 30 min and the phone locked up when time was up (which means that us parents don’t have to tell him to get off, it does it own its own so we’re not the bad guy in the moment!). That worked like a charm. It’s going to be a tricky balance–how to balance obsessive behaviour/anxiety with healthy phone usage. It’s so tempting to just ban him from phones for life, but like all humans in 2019, he needs to learn how to have a healthy relationship with a phone. It’s just part of being independent and functional in society. And it’s a personal safety thing too.
It’s such a strange time in our autism parenting life right now. We’re trying to navigate the daily struggles and pushes for independence (and yes, there are success stories too), but starting to think of what the future looks like (even only a year out after high school) is a little daunting.
Why can’t they just stay little forever!?