Welcome friend, I'm so glad you made it back. Oh, do I see a new face out there as well? I hope so, and a warm welcome to you as well.
If you've been with me for a while then you may remember that last week I started rambling about the next steps we are facing in my son's life as he starts high school in the fall, and how we find ourselves needing to start looking for a group home or alternative for Wills since the waiting lists can be so long. Well I've had a few people ask why he can't just continue to live at home with his mother and I; and while I did touch on this in last week's ramble, I must admit I wasn't as clear as I could have been.
The first problem, to be blunt, is simply age. I'm currently 54 while my son is 15. If he gets held back a year or two in high school (and since he's been held back at least twice already I have no reason to believe he won't be held back again), then he will be 21 and I will be 60 when he graduates. Add in various health problems which have caused me troubles over the past two years, and there's a very good chance that I will be starting to have problems giving Wills all the support he will need. Even if those problems don't rear their ugly head again, by the time Wills is in his 30's I will be in my 70's. By the time he's in his 40's and just beginning to hit middle age, I will be in my 80's; and since my grandparents all died in their 80's, well... Either way, unless Wills dies at a very early age, and there's absolutely no reason to think he will absent some terrific accident, he will out live me by at least 30 years. So unless I want to depend on the kindness of the state and strangers, I must see to his living arrangements while I am still able to do so. Add in that those on the autism spectrum do not deal with change very well, and it will be best if I get him into some appropriate housing as soon after graduation as I can so that I will still be able to deal with any unforeseen complications while I still have the facilities to do so.
But even leaving that aside, those who are on the spectrum like Wills is are not really that different from their peers once all the folderol is stripped away. They still have the same needs and desires, the same pyramid of needs. They still want friends, even if they have troubles making them. They still need love, and they need even more to know that that love is unconditional. What's more, they still want and need their independence. I mean, think about it. When you finished school, whether that be high school or college, did you want to continue living in your parents house? Or did you have a burning desire to be out on your own, proving that you were an adult with all that that implied? Unless you're extremely different from everyone else I know, you couldn't wait to be out and free of the apron strings! So what in the wide, wide world of sports makes you think for even one minute that Wills wouldn't want the same thing? Of course he will! He's human after all. But no matter how much he might want his independence, unless he makes a miraculous break through in the next 5 years he simply will not be able to live completely on his own. His verbal skills are too weak, not to mention his social skills; and odds are he will always need someone to help him with all those little details that neurotypical people handle on a day to day basis with out even thinking about them. Things like remembering to check his calendar to see what day it is, remembering to wash his clothes before he finds himself literally without a single thing clean enough to wear to what ever job he manages to find. Reminding him of doctor's appointments, and to refill his meds. And so he will need some kind of support structure, most likely in the form of a group home, that will allow him as much independence as possible while making sure he gets what he needs.
And so we are back where we were last week more or less. I have in the past week found a group home run by the Evangelical Lutheran Church of America in Columbia, SC; a mere hour and a half away, much better than the 3 1/2 hour to 4 hour drive to the one in Charleston so that is looking up. But I'm afraid that the waiting list lengths have not changed at all, so we're still looking at a 6 to 10 year wait even once we find a home to get him a place he can call his own. Nor have any of the other challenges improved (not that I thought they would in just a week). And so dear reader, we come to the close of another ramble with my prospects just as bleak as they were in so many ways. As before, I hope I didn't depress you and I hope for the sake of all our children, both on and off the spectrum, that you will continue to come along for the ride. We need so much more than is currently available in so many states, but for that to happen we need as many supporters as possible. Even more, we need everyone everywhere to understand the needs of our children as they steadily march on towards adulthood. Already I see too many homeless people coming into our hospitals who should be receiving some form of assistance due to one disability or another. It breaks my heart to think that Wills and his classmates could someday find themselves in that same situation. I hope and pray every night and every day that it will not come to that, but unless improvements are made soon it's all too likely that we will start seeing people on the spectrum left homeless simply because there are not enough places to care for them. This is why I started my company. To raise the money I need to make sure that Wills will never find himself in that position; but even if I succeed for my son, there are hundreds, even thousands out there just like him. Will you help? I hope you will, even if that help is only thinking about what I've said.
Until next time dear reader. I wish you all the best, and I hope to see you here in my little corner of cyberspace again soon. And remember as always, if it's worth doing then it's worth doing with attitude.
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!