Controversial thoughts?

Last night I forced myself to watch a one hour documentary on two mothers that gave birth to Down’s Syndrome babies in 2004. The two were born the same week and the two mothers were different like night and day. Stella’s mother was very honest. She was the mother of three children and during the documentary she gave birth to a fourth child. She spoke of her husband’s reaction to the baby after birth. How he had studied the baby and said she was perfect even though she obviously was not. And how she had to pretend to be happy because one is not allowed to show how sad one is over receiving a not perfect child, a handicapped child. From what one saw, she worked 11 hours a day, supporting the family and always being tired, since at home she had to balance a family with a handicapped child. Her fears when getting pregnant at age 41, were of course reasonable, and her not knowing what to do if she found out she was carrying another Down’s. She decided not to find out. And I can fully understand her decision. As I could, her decision, to let her child stay in 0-class an extra year since she did not know whether a normal school would be the best for Stella, where they can not guarantee understanding and adjustments to Stella’s handicap. Or a “sär”school, where everything is set up to receive the handicapped child. In the program, you saw a family that has accepted that one family member is handicapped but life must go on as usual anyway.

It was the other woman that was the shocking one. Her son Ossian, will be the death of her because she was in denial. She was training him day and night but refused to see that what she is trying to do, that she is trying to cure him from Down’s, trying desperately to make him normal, when that can never happen. A therapist warned her that she will soon stand alone with Ossian because her husband and daughter feel like Ossian is the only one that matters to her. All her time was dedicated to him and instead of accepting his handicap and trying to make life bearable for him, she battles with society to make it accept him has normal. It looked like she doesn’t work but HE is her work. So she had all the time in the world, to sit and collect articles about Down’s, that offend her. Articles from Denmark that proudly announced that Down’s births have been cut in half, after screening was introduced. She decided to go and confront the doctor! Yes, Denmark is looking more and more like 1933-1939 Nazi Germany with some of the same thoughts. But the doctor did have a point. These children cost society a lot. They need surgery for heart problems and kidney failures. They will always need extra help in school from tax money. I would not say, that these arguments are the way we should think. But the doctor asked the mother and the film team if all of them are against screening and abortion. The sound girl, said she did not know what she thinks about things BUT I must say that the mother’s arguments were crazy! She said that what makes Ossian Ossian, is his Down’s. And that his kind must exist to teach class mates empathy. She is not allowing herself to feel what the other mother is feeling. Sadness over receiving a handicapped child. What mother does not want to receive a healthy child? What mother, if having a choice, will say, yes please, give me a handicapped child because then we will all learn something! Don’t we all ask the midwife, does he have five fingers, five toes? And stare in to the baby’s face to make sure it has not got Down’s? Yes, if we do receive a handicapped child, we will learn to love that child just like our other children. But we can not feel happy about not receiving a healthy child! That is what we all desire when we desire a child.

I have a child with ADHD. I could say, that his ADHD makes him “Kitty”. But I can honestly say that during difficult days, I look at him and wish he was not having this handicap. I wonder what it would have been like if his brain had had all the chemicals it is supposed to have. I would have done anything for him to be spared all that it means to have a handicap. I would not have had to dread fetching him in school, wondering what complaint I will hear when arriving. I would not have to look away when meeting parents, since I am fully aware of that they can not hate him, but they hate me for making their children have to have him in their classroom. They hate me because my child has hit their children. My child creates havoc in the classroom. To sit and say that I am grateful for my child’s handicap would be sick! The mother of Ossian, should think about HIM. If he is put in a normal classroom, he will take so much extra time, that the teacher will not be able to fulfill her job towards the other normal children. Is that fair? And he can see in the faces of the other children, that he does not look like them. He can see the other children’s reactions to his behaviour. My son suffers from people’s comments that he is “sick in the head”, that he is “awful”, that he is “horrible”, that he is “mean”, that he is “poorly behaved”. No, his handicap does not show with slanted eyes, tongue outside his mouth and fatness. So he gets judged in another way, but still. If Ossian’s mother stops up to think, she will realize, that she is an egoistic person. She wants the council to let her son be in the local swim school, even after he has done two terms there, without learning how to swim, when they have told her to go in to town to a special needs group instead. When will she accept that her son is not normal, and need the extra help, that a teacher that is not trained for that, can not give him? And when will she understand, that being with other Down’s might actually make him progress more, when he doesn’t feel different, than forcing him to be with normal children, and realizing that he is not like them. I sat and got angry last night, since it was so obvious that she is trying to hide a guilty conscience by bending over backwards for Ossian and neglecting everything else, including a sweet little daughter and a loving husband. It was clear that the marriage will not last much longer.

What is my objection? I don’t believe that you have the right to kill these babies in utero to save society’s limited funds. But to deny that these children will demand more than a parent might be able to give and handle, is ridiculous. Not everyone is going to be able to cope. And one should not take the decision to have a child with Down’s to rub it in to society’s face that they must learn empathy! Personally I could never kill a child and I could not have an amnio since that could cause miscarriage. I never ever want to go through what I went through last year, loosing Serena Rose.  But I can fully understand parents and that they would rather have had a normal child, than having to go through the constant struggle that a severe handicap like Down’s means. There is room for all kinds in society: handicaps, colours, religions. BUT it is important to understand that special needs children need special care. You can not put on a blindfold over your eyes and say that a child with Down’s is just a little bit different, but normal. Normal it is not and will never be. If you force them to grow up with normal children in the school setting and other activities, you are telling the children that they are not good enough the way they are. They will perfectly well see that they can not do what other children do. And to have a woman like Ossian’s mother say that they should have a normal life like everyone else, is insane. A person with an IQ of 70 or less, will never be able to have a life like everybody else. Obviously they are not going to be able to work as physicists. Obviously they are not going to be able to get driver’s licenses, graduate from university, date, marry and have a family, when they can hardly get dressed on their own, let alone brush teeth, cook for themselves, or do the simplest of things like stand still. This program really stirred my emotions up and to Ossian’s mum I only have one thing to say: Wake up! Get a grip on yourself. This is not about YOU, but about your son!

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