What do I know about Autism and Aspergers? Well I can tell you I’ve got a son with Aspergers (technically he’s on the Autism spectrum), that I have friends with Autistic children, That I follow a couple of blogs written by parents of Autistic Kids… And then I would tell you that I really don’t know a darn thing.
…Note: These are my thoughts and opinions based on my own experiences….
It isn’t because I don’t have a fancy degree or a bunch of letters after my name. It’s because every child, every person, every situation is different. No two people with Autism or Aspergers are the same. Each one is different with their own set of triggers (things that may cause a melt down or disruption to the process of getting done whatever needs to get done), their own nuances, their own sets of social awkwardness. I’m sure we could continue on with a list a mile long.
For some, something as simple as a sock or a helmet or a backpack not fitting exactly right can cause a mealtdown or at least a disruption to the flow of gettingdressed and ready to go. Others may have other triggers that cause mealtdowns or trip them up.
Dealing with the nuances of Autism is like being on a roller coaster… There’s going to be constant ups and downs. You may think you have a certain type of situation figured out or dealt with only to have it pop back up at a later point. With children, you’re going to have new situations pop up as the child grows and develops.
Here are couple good blogs (written by parents of kids who have Autims and Aspergers) that have good information and insight:
A Blog About Raising My Autistic son
“Your Autism isn’t an excuse” – This is something we tell our son from time to time, and try to teach him….
Before you go off on me for being uncaring and insensitive…. Let me explain. Our son, as we suspect is the case with me, is very high functioning. In fact you might not even notice, especially at first. When people think Autism, they often think sitting in the corner rocking or the need forba strict – unflexible – schedule. They think of the movie “rain man”. But not all autistic or aspergers kids have those kind of obvious characteristics.
While I think it’s important for people to have a general awareness and understanding of autism, I feel that it’s equally important that my son learn proper behaviors & ettiquette. It’s important for him to learn that certain behaviors or talking about things in an inappropriate setting is not only, well, inappropriate…but can also cause major problems. He needs to understand, especially as he gets older, that if he has a meltdown in public people are not going to think “autism” – they’re going to be concerned for their safety (and maybe those around them). I also think it’s important that he learn the ability of self advocation & coping skills as he goes through High School and eventually college & career.
It’s called “slipping through the cracks”… Where a person is bad enough off (in whatever way) that they need assistance in some area, but not bad enough off that that assistance is forth-coming.
We are currently dealing this experience with The Husband.
After nearly 26 years in a wheelchair due to a Spinal Cord Injury and a stroke (we believe, directly or indirectly, related to the Spinal Cord Injury) my husband’s health and abilities have substantially decreased from even the earlier years of our marriage. I should mention, at this time, that my husband was in a wheelchair at the time that we got together in 1995. At that time, however, he was still relatively independent and able to do his own transfers to places like the bed, the toilet, etc. He was also semi ambulatory and able to stand and even walk (with braces) for short distances.
Three things have come into play to decrease that independence. For one, the spinal cord injury itself… There is a phenomenon called “post polio syndrome” where those who suffered polio as a child well experience worsening of symptoms later in life as the body deteriorates… This same thing can occur (though is not as well known about) in those who have suffered a spinal cord injury. Another component is the 26 years in a wheelchair that has played havoc on his shoulders… In short, he now has a torn rotator cuff from the over use of his shoulders pushing around a manual wheelchair for nearly 26 years as well as using his arms as legs in doing transfers and such. The final component is a stroke that he suffered in 2009 that affected (among other things) his balance which has made it so standing is nearly impossible and walking is completely out (even with braces.
So you’re probably wondering about this whole “slipping through the cracks thing”…. The thing is while my husband needs considerably more assistance now than he did in years past, he is not debilitated enough” to need “Nursing Home” level care – ie: he is not totally bedridden unable to feed or clean himself. He does not necessarily need hands-on help with transferring or need the use of a lifting device. But, while he does not need these things, he does require spotting with nearly every transfer (including bed, toilet, shower, etc). He can stand up if he holds on to something, but then is unable to reach down to pull up his lower clothing. The torn rotator has made putting on upper clothing extremely difficult and sometimes he even needs some assistance with that. But, again, he is not completely bed-ridden in need of total hands-on care…. Only assistance & . And apparently not enough that he eligible for outside assistance. So who gets to do all this stuff that my husband needs? Yep, that’s right… Me, The Wife. Which means attempting to go back to work or even any serious amount of volunteer work is a near impossibility, if not an impossibility.
I’m sure I sound like the whining complaining wife. After all, my husband is not completely bed-ridden and is able to do his own care and help in the areas in which he requires assistance, but as he gets older and his body wears out more, the need for assistance slowly increases… At the same time as I get older my own body wears out and I find it more and more difficult to do things I could just 5-10 years earlier, including helping my husband with the things he needs help with.
But as I write this, I realize that my husband isn’t the only one who falls between these proverbial cracks. No doubt there are many who are not bad enough off to need total “nursing home” level care, but are bad enough off that they need assistance in areas (perhaps physical therapy or help with dressing, or preparation of meals, etc). I can tell you from the point of view of a spouse who also has to act (at least in some capacity) as a “caretaker” it is not only difficult on the disabled spouse to have to rely on the other spouse (particularly when it is the man who is disabled relying on their wife), but it is also wearing on the spouse who must provide that assistance.
A while back, I wrote a short piece entitled I’m Really Not a Saint. I won’t go into the details of that post, but will tell you that I have had my moments where I find myself burned out because whenever my husband needs assistance with something, I am the one who has to come help.
To add to this stress level, our 13 year old son has Aspergers/low-level (ie high functioning) Autism, which I will not get into here. Because he is high functioning, he does not need constant monitoring and assistance, but does require slightly more than say the average child might in remembering to do certain things. While this does not add to my physical stress-level, it does add to the emotional and mental one since the responsibility of making sure he remembers to do or take care of certain things falls on my shoulders, wearing me and burning me out even further, but again we fall through the cracks of receiving assistance that might help my son learn how to deal with the aspergers/autism and teach him the ability to function in a normal fashion, so again we have the “slipping through the cracks” scenario. And, again, the work load and responsibility falls on me the mother. Like the scenario I spoke of earlier in this post as related to my husband, again, I am certain I am not the only person to be faced with this situation where a child or spouse or loved one is in need of outside assistance but not bad enough to warrant nursing-home or institutional level care and so the help is not provided and the responsibility of providing such falls totally and completely on the shoulders of the parent, other spouse, other loved one, etc.