This is a response I posted to a list. It's not a public list so I've edited it a bit to protect peoples' privacy, but this post was about special children - children with disabilities and how they affect the perspective of their parents. What I wound up writing describes my feelings about my son so well I doubt I'll be able to repeat it; it also maybe, I hope, will be bring a ray of bright into the lives of those who share the anguish a parent has when a child is just not quite right.




Here it is:






(This had to do with a very successful woman, very intelligent but not too emotive, who has a child with Down's Syndrome and is having a hard time accepting it)




It's unfortunate she hasn't learned the lesson her son is trying to teach her, isn't it? In a sense I am lucky that really, up until the time my son was 3 he seemed just a little bit more loud and sleepless than most and being a boy I wasn't overly concerned that he didn't speak as well as his sister. But there were odd things, things like you point and he just doesn't get it (he looks at your finger) or that even as a baby he would bang his head on the wall or the floor - many babies do that but the difference is it hasn't stopped and he's 5 next week. A few people made comments, he got asked to leave gymnastics after I assured (and proved) to the head coach he wasn't deaf which made him a danger to others, but then I spoke to someone close to me.




This person is a great example of taking the crap in life and doing something with it. This person has a masters degree and also unfortunately has very bad asthma which made it impossible to work in an office with people smoking. At the same time this person had this brilliant child wouldn't look you in the eye and hated to be touched but at nine months was reading out loud the letters on ads on the bus. Turned out the child had symptoms of Asperger's Syndrome, not a well known thing back then. And being a true genius there were socialization problems, partly because of the Asperger's, partly because of the intelligence. Since this person couldn't work in an office and one of the best things this person does in teach (a fantastic teacher) that led to becoming a teacher for children like their own child - very smart but with problems that at times mean their abilities are masked by their disabilities and they get frustrated. This person has been their child's best advocate and has taught the school system a few things on how to deal with someone so brilliant other than shuffling them off into university at 10 or something ridiculous like that. Now, as an adult, you would never know the child was something different.




This person paid careful attention to my son when I asked. Yes, they agreed my son had a problem and helped me to find the right way to start getting professionals to look at him, 'cause he's just this side of normal so that people who don't know him think he's just difficult.




At the same time I looked at some articles on the web about Asperger's Syndrome and in one them they discussed the "brother"


disorder - Semantic Pregmatic Disorder. Similar to Asperger's except that where Asperger's kids are fantastic with language and not good with social skills, Semantic Pragmatic guys are very poor with language but much more normal in the social skill end of things. Other than that, the two syndromes are similar. There was a link to a paper on Semantic Pragmatic Disorder and it gave me chills it described my son so well. I gave it to his babysitter and it had the same effect on her. Then he was sent to a speech therapist and her assessment - he has semantic pragmatic difficulties with behavioural problems warranting futher assessment by a multi-disciplinary team. So there it was, in black and white, confirming what I knew but hoped wasn't true.




I allowed myself a little bit of a cry in the car on the way in to work. And then I thought, phew! Now we know what we're dealing with. So we can work from there.




Yes, when you discover that your beautiful baby is not perfect


(especially in my case because my daughter is as wonderful as my son is difficult) and that your whole life has just flipped on end, it's scary. I'm mostly scared for him - he has very little sense of danger and will walk in front of a moving car if he's not thinking of the procedure of crossing the street. I believe in my heart he has a lot of great things to give to the world, and I pray constantly that the world will allow him to give his gifts to it.




I feel sorry for the woman with the Down's Syndrome child - these are definitely difficult children to deal with; they will never lead a normal life. But you know recently I had conversation with a friend of mine about the tests we have when we're pregnant and the question of amniocentisis came up and I asked her, this is an invasive procedure. If you were pregnant, what if the results came up with a positive for Down's Syndrome? What would you do? If you would keep it, why take the test then? If I were to have another child (not likely, I admit), I wouldn't take it. Not that I'm a rabid anti-abortion person - I believe in people having a choice, partly because if you are meant to be born at a certain time in a certain place to certain people, you will be. But take a test that forces you to chose? No.




Why? Because yes, Down's Syndrome children are mentally retarded and will never live normal lives. But they also have the most loving, most pure hearts you will ever find and such love and happiness at being alive deserves to be here.




Those of us living and breathing today are meant to be here. It's hard, but the lessons I'm learning are worth the trouble. And my son, there's no one in this world who can make me laugh like he does, and I love to laugh. So there we go.