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Why I Should Never Die

Posted Mar 13 2014 4:40pm

I’ve been wondering lately how to become a ghost after I die. I am not looking to die — not at all. In fact the opposite is true. Of course most of us are at least reluctant to die, even afraid to die. My fear goes way beyond the usual, however, because I have a severely autistic son who is 24 and even though I have a wonderful husband I can’t imagine he’ll be around the rest of my son’s lifetime. I also have two other terrific sons; and although I do think will one day be able to provide some oversight for Nat, they are already beginning to grow their own complicated lives. And they were not put on this earth to be their brother’s keeper — it just does not feel fair to put that on them, unless they really seek it out.

This is the dilemma that so many autism parents face, that they just cannot die because who will take care of their kid the way they do? He will have to live his life not loved the way I want him to be loved.  This had not been on my mind, however, until recently, when Nat’s group home started to self-destruct. Trouble had been brewing for a while, just under the surface, but it seemed like the normal stew that happens when people are thrown together in an intense situation. This was not a typical group home assembled by the state; the families had come together after having known one another for some time. Our sons had similar needs and interests — and funding. Under the new philosophy of Self Determination — a nationwide disability movement designed to give the person himself the biggest say in his adult life — we applied to our state agency and the home was built.

We were the lucky ones. We knew we were lucky. Once the school years are over, many autism families have their adult children living at home with them with little to no outside support. Whatever issues and challenges remain for that highly disabled person — such as frustrations with communicating leading to self-injurious behavior, poor social skills, or cognitive delays –   the aging parents are left to manage on their own. I have friends whose kids are home. One of those is a single mom, and her son sometimes needs five people to restrain him when he gets upset. Another friend’s son lives at home because he was so unhappy in his group home that they have not been able to get him to go to another one. He has dreams of living on his own which have little to do with reality: a cottage somewhere, college. But his social ability is pretty fragile; it is tough for him to make friends and figure out who is good and who is not. Most families I meet do not know where to look for resources. If they find funding, there are often heavy restrictions on how the money may be used, and there is tremendous competition for these funds — in other words, the food is bad and the portions are too small.

Shortly after our young men started living together, things started to fall apart. One family did not like how a staff person handled their son when he escalated into a public tantrum — involving a police car. The trust between them was shattered, just like that, which is understandable — their vulnerable son’s wellbeing seemed to be at stake. This family left our group. We were relieved. I especially loved this staff person. He was not perfect by any means — not so great with paperwork, sometimes a little bit of a know-it-all, and yet he treated Nat like a friend, not with the distance or indifference I’d often come across in Nat’s school residence. The norm in staff mostly feels like kindness- but-just-managing the guys. Yet, on $10 an hour, I’ve been okay with that.

But other families’ confidence has started to wobble, too. We started to have tense emails going around — I take a lot of responsibility for sparking and fanning some of those flames — I’m only human, and I got tired of the complaints, however legitimate some of them were. We stopped having family meetings. Information around our sons became less frequent, and the grumbling among us got louder.

Then, just the other day, yet another of the parents took me aside and told me that she was upset about the quality of their meals and the low stock of some food items that she felt were important for her son’s health. She’d taken to stocking the refrigerator with salad and fruit herself. Again, I could not blame her for feeling this way, but at the same time, I felt my impatience rise. What can we really expect from underpaid, overworked, paperworked-to-death staff? My son was fine, anyway.

Or was he? Just a few months back, his weight had dropped dangerously low. Our doctor had him go in for tests and to see specialists, including a nutritionist. But with a young man who answers, “yes,” to nearly everything simply because he thinks that this is the answer that you are expecting and that will make you stop trying to get him to talk, it is very difficult to compile accurate medical data. Ultimately, the recommendation was to increase Nat’s healthy food intake, to push his calories up. So far, so good. But Nat’s weight is now a chronic worry of mine.

Even with four families’ vigilance and heavy involvement bordering on micromanagement, there have been problems where one family has left, and I have considered pulling Nat out to live in a calmer atmosphere with a caregiver.  But how can I be sure that even this is a good solution? I still will not have the oversight I would have if he lived in our home. But he cannot live with us. That was disastrous a while back; we could not manage his anxiety and he became frighteningly aggressive or out of control with us at times — once he broke a window with his head, another time he attacked me at the subway platform. And on and on. Oh, it’s gotten better. But the specter of my trauma remains.

Yet Nat’s dad and I are probably the ones who care about him the most of anyone on this earth. And, imperfect as it is, we are still on this earth, so we can still look out for him. But when our time comes, protecting Nat–  let alone giving him a life where he can grow — will become an ugly problem. These days, I have no solution. And there are thousands and thousands just like me or worse.

My heart bleeds itself dry when I think about what else I’ll have to accept for Nat. But when I’m dead, I won’t even know. Perhaps the most horrible thing about that, my deepest, bottomless fear, is that in being dead, I won’t even be able to care.

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