March 14, 2016
Another big milestone is hurtling chez McCafferty. My oldest son, who is severely autistic, will soon be a teen-ager.
And I admit, I anticipate this milestone with a mixture of both joy and trepidation.
Frankly, if Justin were neurotypical I’d feel exactly the same way. I taught sixth grade for a number of years, was witness to the myriad of changes that took place within my students between September and June. It’s a lot for them to process, the roller coaster ride of puberty not being the easiest (or the most fun!) thing in the world to deal with.
And honestly, I’m not sure how it will play out with Justin.
The fact that my son is going from a “tween” to a teen has made me start looking at his future, first by attending a workshop on sexuality and autism (conducted by my good friend at POAC, attend it, Jersey people don’t wimp out), and second by talking to friends whose adult autistic children have aged out of the system. I’ve seen a multitude of post-21 scenarios take place. Friends of ours have put their son in a group home, and so far he is thriving. Other friends have chosen to keep their two autistic adults home with them and have six to seven day a week care (which they had to fight for by the way.) Yet another has their son living with just a few other autistic adults in a condo setting, and thriving there as well.
And even as I contemplate all of these different options I laugh, because when Justin ages out in eight years so will a gazillion other autistic individuals, and I may not have so many pretty options.
Particularly in Jersey, where in ten years of living back here I swear I have yet to tell someone about my kids who doesn’t have a connection to autism.
We’re really good at it here.
To be honest, Jeff and I just want to pack it all in and move the kids to Hawaii, as they are currently rated #1 for adult autism services in the country. Dude could spend his requisite seventeen minutes on the beach and ride horses all day. I’ve heard there are really pretty drinks there. A win-win for all.
The options for post-21 care swirl around in my brain, mostly when I’m in the car or running, the latter being where I process the best. I play around with the different options, but none of them seem so hot for the sixty or so years he’ll grace this earth after high school. If I’m being brutally honest with myself, he’d want to stay home with me, play his DVDs all day, organize a few things, eat, get out for fifty-seven minutes, and go to bed. Let’s just say our boy is very “paired” with us, and if he could stay here forever with us in this exact house, he would. Since my plan of living until he’s eighty and I’m a hundred and sixteen (with the two of us sliding into the great unknown holding hands together) doesn’t have a chance in hell of coming to fruition, I’m left with keeping him here for several decades, then placing him somewhere in his forties when his parents are too damn old to care for him anymore.
Knowing my boy, I can tell you that option will not be met with a great deal of enthusiasm on his part.
Being honest (once again) I have to share that there is a big part of me that wants my freedom back too. I’ve always been very independent, entered that parent contract with the idea that at some point before I became relatively feeble I’d get a version of my pre-child life back. I’d like to go on one of those Viking cruises I see advertised on Downton Abbey, or sit in bed all day binge-watching my Sex and the City DVDs. I’d like to schedule my mammogram appointment at sixty without having to worry about child care.
Yes, I know, I have grand aspirations.
I’m a problem solver and a planner, and it irritates me to no end I can’t “fix this,” come up with some grand solution that works for all. The only thing I know for sure is that I don’t want Zach responsible for his brother, as I think he’ll face his own challenges in life. Although I hope he plays a great part in Justin’s as he does now I want him to have choices, hope for him he’ll have the freedom to live wherever he wants.
Hopefully he’ll come back and visit once in a while. Fingers crossed.
I know some of you are probably thinking I’m jumping the gun on all this as it’s eight years away, but I swear just yesterday I was cold-calling every district in New Jersey from DC to figure out where we’d be moving to so our son could start a pre-school program where he’d get a one-on-one aide, and I know how fast the time goes. Hell, it seems like it was just New Year’s eve and we’re practically in February.
It will go fast.
And here’s the thing. He’s awesome. Yes, I know I’m his mother and I’m supposed to feel that way, but he really is. His school loves him. His therapists love him. When he’s not in the throes of his OCD he is an absolute delight. He adores his school which to me is the educational equivalent of Disney, where magically he is happy 99% of the time, is safe, learns, and has fun. There are literally no conflicts there (I said it was magic!). Other than horseback riding, it is the best part of his life. I want him to have a continuation of that beautiful brand of love and fun for his remaining adult decades on earth.
I don’t want that to be over when it’s time to kick him out.
So I’ll wait, and perseverate, and perseverate some more, and hope some fantastic options spring up in the next decade that involve moving to a warmer locale that Justin will think is fabulous too.
Here’s to hoping.
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