November 28, 2016
Remember how I said I was doing my best to live in the present, enjoy the successes and triumphs of my children, not project our current struggles into the future, and, in general, “just be?”
To be fair, I only lied for about an hour, as I made my way home from a workshop with my head spinning about possibilities for Justin’s future, a future I’ve begun to tentatively explore with a very tempered enthusiasm, and quite honestly, some confusion. I’m exploring funding, living arrangements, and day programs, and I’ve gotten my hands on some good literature that I’ve been attempting to decipher. I remain grateful I have friends on the “other side” of twenty-one who I know will help me decode the terms, aware all along that the “abyss” as some parents have termed it is for us eight years away, and a lot can happen in eight years.
When I think of all that’s happened since Justin turned five, I can say with absolute certainty that a great deal can happen in eight years.
For the past six months or so I’ve been delving into Justin’s possible future opportunities, considering living arrangements (which I imagine will be the trickiest of the residential/job/day program trifecta), contemplating whether or not he could work at a job a few hours a day, and researching possible programs where he could spend at least six hours daily, hopefully at times engaged with the community. Last week my head was spinning in a good way as I had heard about several day programs that might possibly be right for Justin, programs with good reputations, activities out in the real world, places that don’t sound like “warehouses” for disabled people. I am very interested in these programs as one thing I do know about Justin is that he is happier when he’s out of the house for long periods- his OCD is more subdued, he’ll engage in more productive activities when he is at home, and he’s just plain happier.
With Justin, or hell any child on the spectrum, happy is key.
I have friends who are doing all sorts of programs with their kids. One friend has their son in a day program he calls “college.” One friend with two adult children on the more severe end of the spectrum has one out of the house most of the day in so many fabulous activities that I’m jealous, and one who’s more of a homebody has support daily in his house. The trick with Justin will be to find a program he will actually enjoy, because if he doesn’t he will be standing at the front door of the establishment waiting for his transportation to come pick him up, saying “Mama” and letting his caregivers know in no uncertain terms that he wants to go home.
And the thing is, eventually my husband and I will die or no longer be able to care for him. He simply can’t be home all day every day forever. He needs to continue to get out into the world. And I’ve got to figure out a way to do that, both for him, and for us.
I have a rich fantasy life when I run (it’s where I do my best thinking), and to be honest with you, during my little three mile stints I’ve fashioned the perfect post-twenty-one world for the McCafferty family. In my fantasy world our family and a number of like-minded souls form a compound like the Kennedys, where our children all live in one residence and their parents live nearby (yes, it’s resort-like, and it’s a fantasy people). Each adult autistic individual has 24/7 care. Our compound includes an indoor/outdoor swimming pool, a movie theater, bowling (why the hell not?), a sensory gym, a fitness room, a large media center with any type of technology our kids could need, and last, a spa (okay, that’s for me, why not throw in a winery while I’m at it). We can see our kids and take them out whenever we want, but we have adult space for ourselves as well. When parents want to travel, we all pitch in and keep an eye on each other’s kids.
Okay, it sounds a little like a commune. But in a good way.
Clearly, short of winning the lottery (I try!) I don’t envision my little compound coming to fruition. But I’ve begun to feel I might be able to piece together a patchwork of a life that my boy will enjoy, and one that stretches him a little too.
And for once, dabbling in the future feels good.
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