Hey there and welcome back! I'm so glad you could make it. My original plan for today was to talk about Retirement Homes and Assisted Living Facilities, especially in light of the disasters we saw this past summer; but then my wife pointed out that Thanksgiving is next week. So, with the official start of Christmas shopping so close upon us, I decided instead to ramble on about something near and dear to my heart; namely buying gifts for special needs children like my son.
As any parent knows, there's little as truly enjoyable as buying Christmas gifts for your child. But when your child is special needs, then things can get a bit twisted. How? Well let’s take a look, shall we?
Most children are anything but shy about telling you what they want for Christmas (or Chanuakah, or Kwanza, or any other holiday you care to mention). But what happens if your child is non-verbal? Many special needs children are after all, so you have to guess what they'd like by what they seem to like. And that isn't always as easy as it sounds. I've known children who loved Zuma but hated Luxor, just to give an example. And sometimes the gifts can get down right strange. One year my son's favorite gift was a desk lamp like the one Pixar used in the opening of their movie's!
Another thing to keep in mind is that age appropriate toys charts are often useless when trying to figure out what would make a great gift for your special needs child. Now I know this seems like a no brainer, but you'd be amazed at the number of well meaning people who will try to talk you out of buying your 15 year old GeoTrax simply because the age charts say GeoTrax is only for children aged 3-7. Ok, ok. I know. Fisher Price stoped making GeoTrax years ago, but it's still one of my son's favorite toys even though he's now 17; so, at least to me, it makes a perfect example of what I'm talking about. In short, if your child enjoys the toy, who cares if it's "age appropriate".
But maybe you're having a mental block while trying to come up with ideas. Believe me, it happens. It can happen to even the best of us, so don't beat yourself up over it. One easy way to get ideas is to type in "Special Needs Toys" on Amazon, Toys R Us, or even Walmart's web site. You'll be amazed at some of the ideas you'll find. Or check out other blogs that deal with special needs children. There's more of us out there than you might think. And finally, talk to your child's teacher. They'll have seen and heard ideas from more sources than you could shake a stick at.
I hope this has helped in some small way. It's definitely one of my shorter rambles, but I think it's an important one. So enjoy, and I hope you found some inspiration for some great gifts. Until next time, Happy Thanksgiving, Happy Advent, and a Merry Christmas to all of you dear readers. And as always, remember, even when buying gifts, do it with attitude!
Four Score and a Pirate
Well it seems I'm temporarily between full time employment at the moment due to various health issues, and so I've been neglecting my rambles a bit lately; for which I do apologize my dear reader. None the less, in looking back over some of my rambles I may have given the impression that having a child on the autism spectrum is nothing but trials and tribulations. Believe me, nothing could be further from the truth! Indeed, both my wife and I tend to have rather severe differences with at least one autism group that treats autism as a horrible disease that desperately needs a cure. My son may be wired a bit different from you and I, but but he's NOT sick or broken! Indeed, if someone could "fix" Wills tomorrow and make him completely normal I'd have to say no thanks.
Baffling? If you've never been where I am it probably is. Of course I would love it if Wills suddenly gained the ability to communicate with us clearly and could expect to support himself like his neuro-typical sister will, but it's his many quirks and foibles that make him what and who he is. To make him "normal" would remove all of that and he would no longer be the son I love more than life itself. Here, let me give you some examples of what I'm talking about.
Many, many young children will, if given a chance, will watch a movie they like until the parents are ready to throw it out into the street and run over it with a tank. Well Wills hasn't out grown that yet, and a couple of weeks ago the movie that had his undivided attention was the SpongeBob Movie. Next thing I knew he had made himself an eye patch that almost any optometrist would be proud of and was running around being Silence! the pirate, a pirate so mean he made his parrot walk the plank when the parrot ignored the command to be Silent! All in all, he made us laugh ourselves sick with his escapades that day.
Another time he found a YouTube video of a Hienz ketchup commercial where two tomatoes were arguing over the pronouciation of the word tomato until at the end a bottle of ketchup smashes down between them and a deep voice says very firmly Hienz. For about 3 days he kept repeating that commercial until, just as I was about to scream, he suddenly replaced the word "Hienz" with "Blender" and started laughing. Words just can't picture the event properly.
Another example would be his bed. Like many on the autism spectrum, my son has a degree of OCD. In his case, his sheets must be just so and his pillow cases absolutely must match the sheets exactly. If they don't then "something's wrong with my bedroom" and he simply cannot sleep in his bed. Now admittedly this drove us nuts for about a week until we figured out what the problem was. Once we did and made sure he knew where his clean sheets and blankets were kept, well he now changes his own bed when he's not happy with it and he hasn't slept in the family room since.
So there you have it dear reader. Admittedly these foibles of Wills would cause many people to pause, but they make him what he is; and if ensuring his ability to survive on his own meant erasing them I would refuse the "cure". Yes, his autism and his limited options for the future adds a measure of stress to my life that, especially now as I work through my own health problems, I could well do with out. But to change him that much would render him a completely different person and I love my son just the way he is. But for now I need to get back to looking for a job that my health issues won't interfere with, so I bid you farewell dear reader. Until we meet again in this little corner of cyberspace I call my own you take care; and remember, if it's worth doing it's worth doing with attitude!
Oh, hey there. Sorry, you caught me off guard for a moment there. Was just looking back at some of my earliest rambles. Would you believe I've actually been at this for almost two years now? Admittedly I missed quite a few rambles in there due to various health problems, especially when I underwent surgery to remove a tumor; but yeah, it actually will be two years come October. Wow. Who'd a thunk it!
But while reading over some of those old rambles, I came across one I wrote shortly after the son of a very good friend had died and I thought maybe I should do some checking to see what has changed in those two years. The sad answer is, unfortunately, very little.
You see, one of the things we as the parents of children on the autism spectrum must deal with all too often is a behavior commonly known as "eloping". And no, it doesn't mean running off to be married on the sly; not when applied to people like my son any way. What it refers to instead is a tendency on the part of children with some form of autism to suddenly take off. Sometimes it seems as if they're trying to get away from something that has greatly disturbed them or even frightened them. In these cases they'll often just take off with no thought except to get away from whatever it is that is causing them distress with absolutely no thought to where they're going or how they're getting there. Other times they get distracted by something that fascinates them beyond all reason, like one young girl who was so fascinated by a bird she had seen that she never even noticed where she was or where she was going as she followed it until she suddenly found herself in the middle of a swamp with no clue as to how to get out. And the sad fact is that all too many of these cases end in the child's death. Not all of them by any means thank God, but enough time to give the parent of any child on the spectrum nightmares.
One of the items I covered in the original ramble was police programs that provide GPS tracking devices to families of children on the spectrum, allowing the department to track and locate a missing child with in minutes of being informed that the child has eloped. In January of 2014, Senator Chuck Schumer of New York get the Justice Department to agree to provide around $10 million dollars in grants and loans to police departments who wished to purchase the equipment after 14 year old Avonte Oquendo went missing from his school and was eventually found in the East River. Yet here it is two years later and a web search for police departments who have taken advantage of this program is sadly rather short. The equipment is available, and as far as I can tell the money is still available; but no one seems to be interested. Indeed, I've even seen articles and blogs that argue against the program, calling it "government surveillance", interference, and worse. And so our children are still eloping, and all too often, dying.
Many who can afford it have bought GPS equipment, and there is a nice selection out there. At least 9 to the best of my knowledge. Three I'm especially impressed with are Angel Sense, the Tracking Watch from Precise Innovation, and the GPS Smart Sole, though I will admit I do not have any direct experience with any of them yet. I would love to be able to actually test them out, but at least at the moment I cannot afford to. No corporate sponsorship don't you know. And while the equipment in many cases are quite reasonable (Angel Sense is currently on sale for only $59.00 for the basic set up), you still have to pay for the GPS service and monitoring. For Angel Sense, that's currently $44.95 a month with a one year contract, roughly $540.00 a year. And yes, compared to cell phone service or cable service, that's a bargain. Unfortunately it's still more than I can afford to pay right now. Nor to the best of my knowledge is there any federal or state program to help low income families pay for this technology unless their local police force has instituted the Justice Department's suggested program.
And so there we are. Watching our children like a hawk, but enjoying their presence in our lives as much as we enjoy their brothers and sisters. And so we continue, and so I will continue. Writing my little rambles and hopefully sharing a bit of what it means to be the father of a child with autism with you. Until next time then. I hope what remains of your summer is everything you could possibly want, and remember. If it's worth doing, it's worth doing with attitude!
Welcome friend. I'm so glad you could join me again. It's Monday, and so the subject must be Autism and/or Special Needs, right? Well, kinda sort of. What I really want to touch on in my rambling today is Caregiver Burnout, especially as applied to someone who is the parent of a special needs child.
If you do a web search for Caregiver Burnout, you'll easilyfind well over 6,000,000 hits; but most of them deal with those of us who are taking care of elderly parents or disabled spouses. Try a web search for Caregiver Burnout in Autism, and you'll also get well over 6,000,000 hits; but many, if not most of them are the same sites and pages as the first search and really don't apply specifically to those parents trying to take care of their special needs offspring. Well, maybe in some ways they do. I mean caregiver burnout is caregiver burnout to a certain extent, but it can happen so much more insidiously for those of us who children are on the autism spectrum. Why? Trust me, I'll get to that in a moment. First though, I really want to go over just what Caregiver Burnout is and how badly it can affect your life.
So what exactly is Caregiver Burnout? Well if you look it up on WebMD you'll find that they define it as "Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned", which is fine as far as it goes. What it doesn't cover is the truly insidious parts. For example, it's estimated that in 2009 65 million Americans were the primary caregiver for one or more loved ones, and they spent somewhere around $375 Billion dollars providing that care. That's over twice the estimated healthcare expenditure for home health care and nursing homes combined! What's more, in the same year 47% of those caregivers reported that they had to use up most or all of their savings trying to provide for their loved ones, while 66% reported that it had a negative impact on their jobs in one way or another. If that's not bad enough, in 2004 the Naval Academy of Sciences report that long term caregivers tended to have a life expectancy fully 10 years shorter than those who were not. Nor are the lives of the caregivers and their families the only ones affected. A study done by MetLife found that American Businesses lose approximately $34 Billion a year due to their employees needing to care for loved ones, plus and additional $13.4 Billion dollars a year in increase health costs. Starting to get the picture?
But why stop there. Here's a few more bits for you to ponder. Among the findings that the CDC found in their study it was determined that long term caregivers had an increased risk of: diabetes, heart conditions, high blood pressure, depression, alcohol and tobacco abuse, drug abuse, obesity, sleep disorders, anxiety disorders, cancer, and chronic pain. Oh yeah, they were also much more likely to get sick with the flu, colds, or other diseases. Gee, ain't they lucky!
So what exactly is it that causes this burnout? A large part of it is simply stress. Yes, I said simply stress, and no, stress is not a simple thing by any way, shape, or means. It's been long understood that excessive stress can have a huge impact on our health, and can you truly imagine anything more stressful that trying to take care of a loved one who for one reason or another cannot take care of themselves? All of us have some hobby or form of entertainment we use to relax, and it's doubly pleasurable when it's done with someone you love such as your spouse. But when you're the primary caregiver for someone, you suddenly find that time that would otherwise be spent relaxing is instead spent seeing for the other person's needs. That's true no matter why the other person needs you, whether it's just that they can no longer physically do some of the things they need done or have developed some form of dementia. But it can be even worse for the parents of a child with autism. Why? Well for one thing, if the person you're providing caregiving for is a parent, they often have friends who would be more than willing to come and visit with them while you and your wife or husband go out for a "date night". If your parent has developed dementia too bad for that, there are sitters and "companions" that can be hired to give you some respite; and often Medicare will help pay for it to some extent. Plus there are nursing homes and skilled care facilities that offer respite services. But who is going to watch your autistic child? Bring in a stranger, and no matter how pleasant that stranger is you'll all too often send your child into a complete spin as his or her all important routine is turn all topsy turvey. Then, even if you're lucky and you child deals much better with strangers than most on the autism spectrum do, very few baby sitters have either the skills or the knowledge to competently care for someone with autism. As a result, that all important relaxation time that we all need to deal with the stress in our lives is in very short supply for parents of those on the spectrum.
Then there's the added stress of feeling isolated. The various problems of the aged are widely understood to at least some degree, for after all, everyone except orphans have parents and grandparents who either are, have, or soon will be getting up there in age. True, there's misconceptions even here; but for the most part even those who get it wrong are still at least in the ball park. But with autism on the other hand ... Yes, I know I've said many times that 1 in 68 children born today are somewhere on the spectrum, but that still means that many, many people have absolutely no experience with what someone with autism can be like. And as for popular media, well, the closest to the truth was "Rainman", and even that movie got more things wrong than it did right. So the only people you can count on to understand are those who are also parents and, to a certain extent, family. Why only to a certain extent family? Because they have no experience either beyond what they get with your child, and unless they live with you that may not be very much. Not that you can blame them. After all, if they're your parents then society has been telling them all their lives that grandparents are supposed to spoil grandkids, so that's what they expected to do until reality slapped them in the face. Then, because they love you and it hurts them to see the pain you're experiencing, they start to offer advice based on what worked for them when they were raising you. And in all honesty, much of it is wonderful advice, if you're raising neurotypical children. But you're not, and so often the advice is close to useless. You know they mean well, and truthfully they probably would have known the advice was bad if they lived with you and saw what you see day in and day out; but they don't. Plus the further away they live, and the less they see first hand what their grandchild is like, the more likely the advice is to be bad and the harder it will be for you to explain to them why. And thus what should be a bastion of strength is more like a rickety old fence or a old abandon shack, and you end up feeling even more alone. Admittedly, I'm pretty lucky in this respect since my mother lives with us and my in-laws are less than a half hour away, but not everyone is as lucky as I am.
Then there's your child "strange" behavior. For someone on the autism spectrum, social skills are not simply hard to learn, often they're completely incomprehensible! Plus they suffer from sensory overload so easily, and from things that make absolutely no sense to us; and so they develop habits to deal with that overload that seem to the ordinary man on the street to be bazaar and baffling in the extreme. We're told by the media that things are getting better. We're told that more and more people are coming to understand that it's not our child's fault and that most people will be understanding. But we find that hard to believe. And sooner or later, we run into someone who doesn't understand; or we over hear some mom telling her daughter "That child needs a good whooping" or "That's what happens when you do drugs during pregnancy", and something deep inside us just wants to hide away and curl up into a ball. When it happens more than once, you start dreading taking your child out in public. What if he or she decides to run up and pull the alter cloth off in the middle of communion? Or grabs something off a strangers plate at a restaurant? And forget taking him or her to a movie. Trying to get a child on the spectrum to sit quietly through a movie at a cinema where everything is too loud, the chair feel strange, and it's more confusing than a Walmart on Saturday? Ain't happening no matter how hard you try. And so all those little social activities other families take for granted may as well be a fairy tale for all that your family will get to enjoy them; and so the isolation grows, and the stress multiplies. Eventually you and your spouse are like powder kegs, just waiting for the fuse to be lit. But what can you do?
Well for one thing, as much as it feels selfish; you absolutely must find a way to take time for yourself. If you're as lucky as I am to have family close at hand, get them even more involved in your child's life. It will help your child grow in ways that might not be obvious, but will in the long do them so much good it can't really be described. Even better, as your child comes to accept them as part of his routine, you and your spouse can go on that all important "date night". If you don't already have one, try to get a case worker for your child. A good case worker can find you resources you'll never find on your own, including, if needed, a good family councilor who can help you through and maybe even prevent caregiver burnout. Look for a local support group or maybe a special needs sport league such as the Miracle League, a special needs camp like Camp Spearhead, or similar groups. There you will be able to mix and mingle with people who truly get it, unlike many of your current friends who may be starting to get a bit distant. Maybe you have a neighbor who seems to connect with your child in a way very few others do. Maybe they'd be willing to come over and watch you child for an hour or so, long enough that you can get a nap without worrying that your child might get into serious trouble or hurt themselves. Or maybe you can get your child interested in going for a walk with you, or practice yoga with you, or do some form of craft. As long as it's fun for both of you. Any of these ideas will help; and let's be honest, the more you can relax and let off some stress, the better a parent you'll be. And isn't that what it's all about in the end? Being the best parent our child can have?
But once again I've come to the limit of what I have time to ramble on about. Is there more I could cover? You betcha, but it'll have to wait for another time. Until then though, may your day be filled with beauty, and the wind always at your back. I hope to see you here in my little corner of cyberspace soon; but until then remember, if it's worth doing, it's worth doing with attitude!
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!