Saturday, 20 March 2010

• Tired of being exhausted!

  I have decided that I am tired of being tired. It’s not even that bone aching tired that you remember from parenting an infant. I would not even call it sleep deprived, even though as parents of autistic children we all know what it means when our children’s rhythms are off and they can’t sleep. How we stay up with them, night after night and adjust our lives to their world view and inner clock. No I am not talking about that kind of tired. I am talking about a different much more ingrained tiredness that effects how we think and feel. How our brain works and how we perceive the world.  

  I am tired of all the stress. It seems that there is a never ending barrage of stress related issues that just don’t let up. On the regular front you have the economy.  Oh boy do you have the economy. I was watching the news and they talked about growth and economic indicators and how everything was starting to look so much better. For whom may I ask? So many of my friends are out of work.  So many who still have a job are being paid less than they were just a few years ago for double the work. The news talked about a decline in wholesale prices. Where and for whom? I haven’t seen it and you can rest assured no one else I know has either. Food prices went down they say. You know it’s not like we eat steak but every time I go to the grocery I pay more for less. My electric and gas bill hasn’t gone down. Car and appliance repairs remain the same. Clothes are no cheaper.  They talk about lower vacation prices, who has money for vacations? Hell we had stopped going on vacation before the recession. I don’t get it and I don’t see it. And this is just the regular everyday cost of living. I haven’t even talked about the medical costs.

  Now these medical expenses are a killer and we all know that. No one charges less. The cost of medicine hasn’t declined. I have to say my insurance company hasn’t decided to give me a break on my co-pays or my premiums. If anything everything went up. However, luckily we do have insurance and at least it pays for something for the boys. It’s ironic you know, that the things I truly need help with, like the therapies, and the life and classroom coaches no one can be bothered to help with. But I am expected to help everyone else. (Now you know that we are a charitable family. But it gets tiresome when the world only approaches you with their hand out and not a hand up) I even thought about registering collegeman with the state disability authority to get some support, until they told me that the support he needs (coaches/aides)they don’t supply for those with invisible disabilities. I am so tired of those in Congress telling me how “rich” I am and thinking of new ways to take my money and throw it away on garbage. But most of all I want to know, when does someone help us? When does someone who has control over the day to day existence of people actually truly give a damn? Don’t tell me the healthcare bill will fix that, it doesn’t. Read here for why.

  There is the bright side of course. Collegeman is doing so much better in school. His behavior is great. I just received an email from the disability director that collegeman’s history professor even told her that he is much improved. We know he is becoming more social and even accepting the fact that people really like him, they really do. Highschoolboy is on track, or for what passes for on track for HSB, can’t really tell for sure with him sometimes. Of course, with HSB it’s different kinds of issues than with his older brother. HSB is less the 16 year old aspie and more the 16 year old. That is, in and of itself, an interesting conundrum for me. You see with all my experience with collegeman and his adolescence I have never had to deal with “normal” teenage issues. Let me tell you, they are a challenge, but truthfully with the boys, it’s all good. At present we are on an upward swing.

  Yet I still worry, I worry all the time for them. I know it’s a normal parent state of mind, but I think our worries, when you have autistic children, are very different than the average family’s worries. No matter how functional your children are, there is always that nagging little man in the back of your head saying "What if".  What if, at every stage of their development and what if, at every stage of a new experience; what if, at every stage of them just walking out the door. While it is a given that an average child will grow into a self-sufficient adult, it is not a given for our children no matter what we do. Yes, the higher functioning, the more chance they have. The higher functioning the more chance they have to have the life we want for them, but society has to comply, and that is what worries me. I don’t like leaving my children's future in the hand of some unnamed, unseen force called society. I don't trust society. I trust myself, society has its own agenda and I am not sure that my children fit into society’s vision of the future.

  The truth of the matter is, is that I am tired of being frightened. Sometimes I am frightened all the time. I used to blame my sleepless nights on menopause, or a late in the day coffee, or that glass of wine with dinner. But in truth I don’t sleep because I am frightened. I realized we, like most Americans in today’s world, live frightened. We live with such angst and anxiety about the world in which we live that we don’t sleep. Add to that the worries that come along with parenting an autistic child and it just runs you down. Unfortunately, I don’t think I will stop being frightened anytime soon. But perhaps we can be frightened together. Maybe that will help.

   It might not help me sleep, but at least we can commiserate and give each other a hand-up.

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