I felt it would be remiss of me if I didn’t write a blog of World Down Syndrome Day. It is a global awareness day that has been officially observed by the United Nations since 2012. The date is significant as it represents the triplication of the 21st chromosome which causes Down’s Syndrome. So today I thought it appropriate to share some of my reflections on life so far with my handsome little man who couldn’t be more perfect.
There are many things that you just don’t give much thought to until they affect you and there have been many enlightening moments for me in the past 9 months. I read a lot about the various difficulties and prejudices people with Down’s Syndrome have to face and I’m pleased to say we haven’t really encountered them ourselves. Yet! However it does send me off into spirals of thought about it all. So I’ll try to put my view over, hopefully without offending anyone in the process.
We had to wait about 6 days for the tests to come back to discover if Huxley was carrying an extra chromosome. The Doctors weren’t sure he definitely was. He had some of the features but not all. A lot of people talk about the negative way in which the news was delivered. Generally with an ‘I’m sorry to have to tell you…’. I am pleased to say that it wasn’t delivered like that to us. It was very matter of fact. ‘We think Huxley may have Down’s Syndrome and we’d like to do a chromosome test to find out.’ There was no implication that it was a bad thing. I will admit to spending the next 6 days with my fingers crossed hoping that he didn’t. I already had a child with additional needs. I worried that this would be another child who would have severe developmental delays. I had hoped that this child would help to bring Daisy along and that a child with Down’s Syndrome wouldn’t. I couldn’t have been more wrong. Daisy has come on leaps and bounds since Huxley came along. We are very lucky with Huxley. Of all the symptoms you find in a list of the diagnosis, so far he seems to display them very mildly. He has surprised us at every turn. I have quite a few friends who had babies around the same time as I had Huxley and he is generally doing the same things at the same time as them. I needn’t have worried.
Many people in the community feel really strongly that you shouldn’t refer to someone with Down’s Syndrome as a ‘down’s syndrome child’ as it defines them by their syndrome and not their individual personality. I do get this. When we visited the geneticist she said to us that ultimately Huxley is half me and half The Tidy Tyrant (probably slightly more than half of me what with the extra chromosome and all that!) and is therefore more like each of us than he is like other people with Down’s Syndrome. He is unique and he is absolutely not defined by his chromosome wonkies.
However, I also get that people do not generally mean offence at this. We are just as likely to say the fat child, the black child or the blonde child. We spend years in school teaching children to put an adjective before a noun after all! I think the problem lies with how they then stereotype people with Down’s Syndrome. I’d like to think that perceptions are changing but we do need a lot more education. Many people have said, oh I’ve met a child with Down’s Syndrome and they are such loving happy children. On the face of it you think it is a lovely compliment. However when you stop to think about it it implies that maybe that is all they have to offer. That maybe we should be thankful for the small mercy that if he brings nothing else to the table, he will be happy and loving. It’s absolutely not true and I don’t think he should be pigeonholed by people’s stereotyping. Huxley will be brought up to believe, as I was, that you can do anything you want if you put your mind to it. Don’t get me wrong, he is very happy and loving, but it is certainly not all he has to offer.
I am realistic enough to know that while I look at Huxley and have to remind myself that he has Down’s Syndrome, it is the first thing that other people will notice about him. When I look at him, I see my gorgeous, gregarious little boy and the Down’s Syndrome is entirely unimportant. I have been truly humbled by the amount of people reading my blog but do wonder why people think I am so inspiring. I just think of myself as a mummy of two little people doing everyday mummy things. We go for playdates, we go to soft play and we go swimming. Life with children with disabilities really isn’t any different to that of anyone else. I think we have a long way to go until people see past the disability and see the person. I think I am still guilty of it when I see other people with disabilities. I do think it is changing though.
I am lucky enough to be teaching in a school which has an autism unit attached. The children in the mainstream school have grown up alongside the children with autism and are aware of the things they find difficult and know how they can help them. It is lovely to see how they understand their differences and include them where they can. Before I had Daisy and Huxley, I don’t think I really thought about the benefits to mainstream children of having an inclusive environment in school. I had only seen the benefits to the children with additional needs. I was so naive. When surrounded by children with different needs to themselves it encourages children to be more empathetic, more understanding and a little less selfish. Children do not judge differences. They just accept them. We could learn a lot from children.
Another thing I have read a lot about is that mums are questioned, so did you know before you had him/her? A lot of people take great offence at this. I guess the implication being that had you known would you not have done something about it? A friend who also has a child with a genetic condition said to me she was getting really annoyed by this question. I had to sit back and think. It was something that I asked people. Why was I asking this question? I really don’t think it was because I was thinking they should have chosen an alternative course of action had they known. I think for me I was just wondering if it had been picked up by the tests or scans. You have the tests and scans during pregnancy and all seems well then all will be fine. You are supposed to feel at ease. In both my pregnancies there was absolutely no indication that there was going to be anything ‘wrong’ (for want of a better word) with my babies. And yet out they popped with chromosome abnormalities. I guess it is the scientist in me questioning the efficacy of the tests and scans. Most of the people I have met who have children with Down’s Syndrome didn’t know until they were born. Most of these people also had the nuchal fold test. It doesn’t seem particularly accurate so why is it being used at all? I guess looking at the statistics, for the people for whom the test does bring back a positive result they do choose an alternative course of action. And well these people aren’t exactly shouting it from the rooftops. So maybe the test is more accurate that it seems. This question doesn’t offend me. If people ask me I’ll tell them. No I didn’t know. It wouldn’t have mattered if I did know. I don’t start second guessing why they are asking me the question because I’d bet if you asked them they aren’t entirely sure themselves. However this question seems to offend most people so you’d be wise not to ask it!
So there are my thoughts. No doubt they will change. I’m sure as Huxley grows up we will be more exposed to the prejudiced ways of people. I worry about him coping in a world where differences present hurdles to jump through instead of being something that is revered. I will have to think carefully about how to equip him for this world. Because make no mistake, I fully intend that this little man is going to have a very big impact on this world.