Better To Burn Out Than Fade Away - I Don't Think So

 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!

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