School's out for the summer and Wills will be advancing to high school next year, something both sweet and sad at the same time. But for us, it also brings an element of fear as well. "Why on earth should him going to high school cause you fear" you ask? Simply because it also brings us a reminder that Wills is growing up. He's already taller than I am, though I doubt he'll ever be as strong; and as sweet and loving a child as anyone could wish. But he's also, as you dear reader know, autistic. The simple truth of the matter is that he will probably never be able to live on his own no matter how much we might wish otherwise, and so his starting high school brings us that much closer to a decision neither my wife nor I really want to have to make. And that, to put it simply, is where will he live when he graduates high school?
For years those on the autism spectrum have been institutionalized, but fortunately those days are long past. The very thought of my sweet child being locked away in a facility far from everyone he knows and loves simply cannot be borne. But where do adults on the autism spectrum live? Well, that varies. Some live with their parents until their parents can no longer take care of them, some lucky few who can function in some form or other in society live on their own. Others live in group homes, and unfortunately, some live in nursing homes for there simply is not enough space available in group homes. Nor are all group homes equal, any more than all nursing homes equal; and for those that are among the better homes it's not uncommon to find they have a 6 to 10 year waiting list to get in. "Oh come on, it can't really be that bad" you say. Right. Tell you what. Jump on your favorite search engine and see how many group homes for adults with autism are near you. Of the three closest to me that I know of, one is an hour away in another state, one is an hour and a half away in yet another state, and the third is at the other end of the state from us, just over three and a half hours away. Add in that 2 of the 3 are state supported, and just how likely do you think it is that I'll be able to find someplace close enough to drop in and visit my son for an evening or a weekend? From where I sit, not very.
Then again, as I said earlier, not all group homes are created equal. Perhaps the best I've heard of is one in California called Sweetwater Spectrum. This oasis of a home is comprised of 4 4 bedroom houses on just over 3 acres, allowing each resident to have his own bedroom and a private bathroom in addition to various common rooms, a swimming pool, a community center with kitchen for those who cannot cook their own food, a gym, and a full staff to help each resident as is needed. However such amenities cost, and last I heard it cost just over $3,000.00 a month to live there; just a bit less than my wife and I bring home each month, so even if we had a chance in hell of getting Wills accepted there, there's just no way we could afford it. Besides, if I hate the thought of him living 3 and a half hours away; you can imagine how I would feel about him living clear across the country in California. It has been suggested that maybe I should get a similar facility built here in South Carolina, but I'm not rich, I'm not a developer, and I don't have friends in the State House to call upon. I could try to get investors interested in funding such a facility, but it would be a risky investment;and even if I succeeded, how do I assure that people only interested in return on investment would not insist that Wills be evicted to make room for someone who could pay once I've passed on?
All in all, it's not a very cheery thought; but it's one I must face in the coming years, and the sooner I start the better for Wills. I would personally love to keep him at home with my wife and I, but there's no way we could care for him properly when we start to get on in years; and so a group home must be considered, and considered carefully. Just one more thing in a string of things we must face, but face it we will; for the alternative is unthinkable.
In the meantime, we have come to the end of yet another ramble here in my little corner of cyberspace. I hope I haven't depressed you too badly, but I also hope I've made you think. One out of every 68 children born in the past decade are on the autism spectrum, and the number of children who are fast approaching adulthood is staggering. Yet our leaders do not seem to be considering the possible consequences. Are you willing to face them with me? I hope for the sake of our children you will. Until next time then dear reader. May the road rise up to meet you and may your skies always be sunny; and remember, if it's worth doing then it's worth doing with attitude!
Leave a Reply.