Oh, I'm really sorry that your son passed away, Sheila. How sad. Thank you for posting that poem. I read the whole thing. Also, why is the syndrome now called "Down" rather than "Down's"? Wasn't it named for somebody? Just calling it "Down" sounds like they are "putting it down." When did they make the change?

 

As the mother of a child with Asperger's, I understand this feeling. While my son can walk and talk, he cannot handle social situations well. He doesn't like loud noises or crowds. He doesn't understand social 'norms.' He acts out in stores and sometimes cries loudly when he doesn't get something, or can't do something, that he had solidified in his mind. He is a very tall nine year old, so when these things happen, he (and I) gets the opposite reaction. People see him alright. They stare at him, and at me, wondering why I can't control my child. On the flip-side, he is also invisible. When people come into a room, he doesn't interact, so neither do they. Or, if he's feeling particularly excited about something he's learned, he may tell someone about it, over and over again, not realizing that they have no interest in what he's saying. People start to do other things, or even walk away. I have to admit that I am grateful, in these instances, that he can't read facial expressions well. He doesn't even realize that they're not paying attention. He assumes that they are as excited as he is. And he smiles too.

 

I have worked peripherally (at first) with disabled persons for the past several years. I say peripherally, because I was an abuse and neglect investigator and I had to interview - or at least see - each alleged victim. I quickly learned that it didn't matter if they could tell me their story or not. It was the personal interaction of someone new coming in to see and talk with (or to) them. I never had a single person react badly to the attention I gave them, whether they were talking or just watching. I spoke to them as I would have to anyone else. I think this is also important.

I no longer investigate, but due to my work experience, I now handle the Child Welfare cases of most of the disabled children for my team. I don't mind. I have learned to relate to my clients on a basic level. It's just really too bad that other workers haven't realized that all it takes is it listen, and smile, and spend some time focusing only on the child.