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Long Term Plans

Posted Mar 08 2012 9:45pm
I posted my Goslin meme early , because I didn't think I'd be around my computer with my brain on straight long enough to post it on time. Then I got smacked in the face with yet another report of despair dragging a defenseless autistic young man to his death at the hands of his primary care giver : his mother. It is the kind of story, the way it is being currently presented, that makes me cringe.

There are certain details that make me downright red in the face. The young man had been in a day program with an adult component, and the mother pulled him from it 2-3 months ago. Why? And when she had trouble getting him into another program, why didn't she contact the old center? We need more information there. Why was he pulled without having another place to go set up? That's about as wise as quitting your job without another lined up when you live paycheck-to-paycheck, then wondering why you can't pay your rent. Was there a problem at the center? Had she tried to get him in the adult service and been denied? What happened there? It doesn't make sense. Then to break down in only 2-3 months of care? There is something wrong there, too. I know lots of folks with severely disabled kids who do the day in-day out thing for years before they even start pulling their hair out. Again, not enough information. Was she completely unprepared for the responsibility and effort? Was his behavior particularly challenging? The descriptions of the young man do not suggest that, but we simply do not know. (And challenging behavior is still no reason to kill someone.)

And in the end, who has the right to pull out a gun and kill another human being, for any reason? Call me cold, but the whole murder-suicide thing? I'm not very sympathetic to the murderer. It is one thing to take yourself out- that is tragic enough, and serious enough. I have very definite thoughts about suicide, and I am with those who say people do not "commit suicide"; it is more appropriate to talk of someone being "lost to suicide." To take someone out with you? You are moving into a realm beyond any reason. Obviously, when you are in a state where you are suicidal, you are already not in a "typical" rational state. It is bad enough to lose someone to suicide. To lose your family to suicide and to murder at once? My brain goes scrambled-eggs just trying to wrap it around such a concept. You never have the right to kill anyone, unless they are about to kill you. And I mean directly. The whole thing makes no sense. We lost two people in this incident: a young man who was doing his best to live his life, and his mother, who decided to end both lives for reasons and purposes unknown to us.

But it is something that sets me thinking, as I watch Joey and think about his upcoming IEPs and his needs and progress and "current level of performance" etc etc etc. There is much talk about kids "aging out" at 21- but this is only if it is decided that the school is still supposed to be supporting your child with educational service after age 18. With kids like Joey, who are academically on grade level or beyond, it is a much harder fight to keep them in the educational system beyond the age of 18, when their typical peers are graduating. And either way, what happens to Joey after graduation, if he is not able to live independently (yet)?

Yeah, I haven't gotten much sleep lately. Thanks.

Most of my plans and counterplans and back-up plans consider this possibility. What if Joey cannot go out on his own yet? Or, since we have no clue what the future holds, ever? Am I ready for him to stay with us forever? We aren't talking about the kid who never gets it together to move out of mom and dad's basement (though that is also a possibility- for either child- you never know). I'm talking about the possibility of Joey needing extra support, and enough of it that putting him in his own apartment would not be a good option. What other options might be out there? Am I ready for him to stay here?

I don't know too many parents who have adult children or adult loved ones with need for support to the point that living independently is a limited option, or not one. I have a friend who started a group home for her adult daughter- she had the resources to do that, and it has worked out nicely. I have a colleague who surprised me one day when my Joey was first diagnosed by revealing they had an adult child with neuro-developmental disabilities living at home (and that their adult child brought much joy to the family! Thank you for sharing that part, too!) We have a neighbor with a younger adult child who has a job with a local company and still lives with them, and that seems to be working out well for them. Would it then be a disaster if Joey remained here with me?

Hello- no. I love Joey, I love being with my Joey, and we are very very very fortunate that 1. he is Joey- a delightful and wonderful human being and 2. he functions currently at a level where the issue of supervision is not as dire as many other families I know. Yes, I have to keep the doors locked, and we have our wild days, but for the most part, Joey is Joey, and he lives in a world that fits comfortably within the family scope and understanding, just like all the other family members, no problem. In fact, if Andy develops needs that meant he couldn't live independently, I'm ready, thinking about how we would all live here together as four full adults; but I know the possibility is higher with Joey than with Andy.

Then, what happens if something happens to me? Or more correctly, when something happens to me, and to JoeyAndyDad?

And that is when the planning goes into overdrive.

Joey is nine years old. We're over halfway to 18. We don't know what the world will look like in nine years. More like 8 years. What plans can I be considering and implementing now, to be sure when Joey ages out and I prove to be mortal like everyone else, Joey will still be able to enjoy his life and live it? That he will have resources to recover from the loss and move on? A better plan than "Andy will have to take care of that"? Yes, its time to start thinking about what balls might need to be rolling to prepare for the future. after all, they aren't little long- and once you are an adult, you are an adult for a long time (we all hope). We all know adult services are seriously lacking, everywhere.

Seriously lacking. Or non-existant.

So it is time to get started, since I doubt I will be winning the lottery anytime soon to start my disability school and family center. Though I admit to buying tickets. After all, that money goes to fund the services we already use.
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