Wouldn’t change a thing… would I?

21 March 2019  |  Tamsin Kingsley

This blog is at the request of my husband, Dan. We both often forget just how much we’ve learnt about Izzy’s various conditions in the past two years, and throw words like SATS, Makaton, Vapotherm and aspiration into conversation without a second thought, with an assumption that we will be understood. Dan sees a wide range of people everyday in the workplace for casual conversations and often realises that people don’t really have a clue what he’s talking about. Probably the one we make most assumptions of people’s knowledge on is Down Syndrome. Which is silly really, considering two years ago I basically knew nothing about it. Comments that I now see as quite ignorant are probably the same ones I would have been making two years ago. So for Down Syndrome awareness day Dan suggested I write a blog to help make people a bit more aware of what Down Syndrome means, as far as I have learnt and understood about it over the past two years. I haven’t done much reading on the subject; we have been in ‘survival mode’ for much of the past two years. Anything I know or believe is from my own experiences and those of others I’ve met or read about (mostly on facebook). 

So firstly, a few things Down Syndrome isn't. It is not an illness or disease, it is not contagious and there is no ‘cure’. It is something you have, not something you are. It is not something you need to be ‘sorry’ for, and it is not something people ‘suffer from’. It does not have a spectrum from ‘bad DS’ to ‘not so bad DS’. It does not run in families*, and it is not caused by doing anything in pregnancy. If any of that is slightly confusing then bear with me, I’m going to try and clear up some of the common misconceptions. 

So what is Down Syndrome? Essentially it means that someone has from conception a third copy of their 21st chromosome (where typically we have two copies). More than that, people with Down Syndrome are just people with different personalities, abilities, interests and health concerns, as we all are. Some people would leave it there, claiming that their child with DS isn’t any different to anyone else. But to stop there just doesn’t explain the challenges and difficulties faced by individuals with DS and their families. Because with that extra copy of the 21st chromosome, comes an increased likelihood of many things, some good, some bad and some neither here nor there. 

I’m not going to list all of them as there are tons of things that become more likely to happen if you have DS, such as heart problems, low tone and delayed speech. You will always have some level of learning delay, but again this is really variable. Hopefully you see how this doesn’t lead to a spectrum- one person with DS may have had multiple heart surgeries and need oxygen, delayed speech but good communication through signing whilst another may have no health issues but severe learning difficulties. Yet another may have good speech and understanding but delayed physical development requiring a wheelchair for some years. You can’t say who has the ‘better’ or ‘worse’ Down Syndrome. It’s also important to realise that how prominently someone has the facial features typically associated with DS has nothing to do with whether and to what extent they have any of the other associated conditions and delays. 

Having an extra copy of your 21st chromosome increases the likelihood of lots of things, but these are all things some of us experience anyway. This can make it hard to understand whether someone is poorly because they have DS, or because they are human! When we first had Izzy, we didn’t understand the link between the fact we were being told she had Down Syndrome, and her various health issues. No one explained how and to what extent the two were linked. But as we’ve learnt more about her, it turns out most of her issues are down to her low tone (or floppiness to you and me) which is linked to the DS. Her floppy airway means it obstructs itself when she relaxes in sleep. Her big floppy tongue and low muscle tone in her mouth makes it hard for her to move food around and swallow. Before surgery the valve at the top of her stomach was so floppy that it was letting all her milk back out causing excessive reflux and vomiting. But of course some babies will have these issues without having Down Syndrome, the diagnosis can just help us know better what to look out for. 

One thing I read online a lot is parents saying they wouldn’t change a thing about their child with Down Syndrome. I’m not sure I totally agree as I would love to eliminate Izzy’s health issues. But I understand it in principle- Izzy without the extra chromosome isn’t Izzy at all. She would look different, have a different personality, interests, and abilities. She would be a different child, and I wouldn’t be without Izzy for the world. Imagine one of your children or someone you know with one of their chromosomes switched out for a different one. Down Syndrome is part of who our children are, and I don’t see it as either a good or a bad thing, just part of their genetics.

Much of what I see online is about all the amazing things people with Down Syndrome are achieving. From academic achievements to modelling and acting, and public speaking to incredible dancing, people with Down Syndrome have done it all! This is truly inspiring as a parent, and encourages me to never limit Izzy in what she can achieve. Everyone wants to believe that their child will be the one to show the world what people with Down Syndrome can do. But as for any parent, it is important to value your child for who they are, not what they achieve. Just as most of us will never achieve anything truly exceptional in the world’s eyes, most people with Down Syndrome won’t either, and that’s ok. Izzy has not been the person with Down Syndrome to walk the earliest, talk the earliest or meet any other milestone the earliest. There are some milestones she may never meet and others she might totally smash. But she is doing things in her time and her own way, and we love her for it. I really truly wouldn’t change her for any other child.

*There are three types of Down Syndrome. Izzy has by far the most common, Trisomy 21. The other 2 are Mosaic DS and Translocation DS. Translocation DS can be inherited from a parent who has a balanced translocation. But generally DS is not inherited and so does not run in families, it is totally random.