Tuesday, November 1, 2011

I Want to Give Up

It's November first and I am living in a house of horrors. No one really understands what it is like to have an eighteen year old who is really a sweet kid most of the time but for whatever reason turns into a monster that I can't handle. I'm amazed my blood pressure isn't through the roof. We live in a rental  and sometime soon I'll be replacing a ceiling, several sections of cheap paneling, a window, and a few light fixtures. This is the ugly side of autism. 
  All in the news when you hear autism its about a child who wandered away, or this family "cured" their son's autism, or how vaccines are not causing autism (but here's a settlement for this family and that family because of it. Which is it, scientists? I'm tired of the games.) You rarely hear of the adults with autism. We work with the kids as soon as we know that autism is the problem, hoping to avoid major problems down the road. But try as we might, some fall through the cracks and are still needing enormous amounts of help when they become adults. I happen to be mother to one such adult. He's nonverbal, still not fully potty trained and those accidents  can be a bear to clean up sometimes. 
  Right now the "answers" I get are to either a) continue to manage him myself the best I can while putting up with self righteous, indignant, judgemental people who think that I shouldn't have a problem in the world keeping the house spotless, much less dare to have a section of ripped paneling for more than five seconds, or b) find an over crowded, under staffed hospital to place him in, where most likely he will be over medicated to make him easier to deal with unless I stand on top of them. There is option c), find a private residential home for him. The waiting lists are as long as my arm for those and hugely expensive. We don't have that kind of money I'm afraid.
 I'm not looking for sympathy.I'm definitely not looking for some well meaning social worker to come and drive me insane with her "help." What I need is... I don't know. Someone who truly understands. Someone willing to ignore the judgements they have in their heads and actually get to work to help. Someone willing to take J for an hour or two so I can get more work done.  It's not easy.  I don't expect it to be. I just get tired of pretending that everything is okay when it isnt. 
  I want to eventually own a home. I know that J would still be messing up walls there, but it would be mine. I could adapt it to be a bit more J proof.I wouldn't be worried that the land lord will see it and want to throw us out.  
 Sometimes I wish I believed in cloning. I could use an extra me or two, to help keep up with things around here. But as in the movie Multiplicity from several years back, that would come with its own problems. For now I do what I can and hang on until my husband gets home from work.We manage. We cry, sometimes scream in frustration. But we keep going.

1 comment:

  1. Hi, there!
    I just want to thank you for sharing your heart. I have just started to read your blog from a friend that has been sharing it. I am a wife of 12 years and mother of 4, 3 of which have some kind of mood disorder, 1 with asperger's, and 1 with such angry outbursts... all these with multiple diagnoses, of course :) Anyway, honestly, I have no idea what you are going through with having to continue with the challenges of non verbal communication, ongoing potty training, etc. Life is difficult, for sure, with the challenges we face here, but my hat is off to you.
    More than anything, I just wanted to thank you for your honesty. People just don't understand. I wish there is something more I could do for you, but I will be praying for you and praying that you get the help you need :) God bless you and keep sharing :)