Parents of children with autism: We struggle alone - KansasCity.com
Good article. It IS lonely. And yes, people DO shy away from you - but you learn that it's probably for the best. It's THEM that are missing a pretty fantastic kid.
The thing with Sal is that she's that nursery rhyme. "When she was good she was good and when she was bad, she was horrid." And the horrid part doesn't seem to be able to stop sometimes. It can become a very vicious circle.
I'm to the point that I'm not sure I really want a cure. Who would she be? I love Sal - just the way Sal is. I only wish I could understand the meltdowns more. I wish we could find a cure for the bathroom accidents. I wish she could do more with her hands. But that all makes Sal who she is. She is the TRUE test of love unconditionally. Some people don't pass that test. :-)
It IS exhausting, and I can empathize with the mother that killed her child and then herself. I am by no means excusing that - but I know where she's coming from. I pray every night that I live just one day longer than Sal. And mostly because I don't want her to go through the heartache of loosing me and then being all alone in a world that doesn't quite make sense to her.
I always look to the mothers of the adult special needs. THEY are the real hero's. In those days there was NO info about this stuff - and yes, they were looked down on BIG time! I get those comments - but I just slip one of the business cards I have made up that explain what the problem is. I LOVE the look of shame on their face after they read it. :-)
I also love hearing mothers "complain" about the VERY insignificant things in their lives. Sal has really put things into perspective for me. I also SO appreciate the people that take the time and DO come into our lives. I tend to gravitate towards REAL people who have kind of a dark humor. They seem to "get" me more. They don't gasp if you say how really TIRED you are of your kid. :-) There's not many, believe me. You can't pretend to be something you're not with Sal - she'll call you out. She's like a horse in that way. :-) I think that's why they all seem to gravitate toward her.
Back to the cure thing. I don't know if we'll see it or even if I want to. What I want more is TOLERANCE. It's a fine line - I expect her to do what she can - I expect her to try and hold it together but I want people to be tolerant when she doesn't . Not to treat her as a baby but to expect her to succeed but be ok if she doesn't. Crazy, crazy life and since I know no other - I'm very scared to change it. :-)
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