Wants And Needs, How a Special Needs Child Compares

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.

---