October is Down’s Syndrome Awareness Month.
Sometimes I feel like I’m living DS awareness continually and I don’t need to highlight the month (I imagine friends and family thinking “Yawn. Yes, we know you have a kid with Down’s Syndrome, stop banging on about it!”), but then I realise it’s an opportunity not to be missed.
I’m always trying to raise awareness that Audrey is great and we are happy – that having a child with DS might not be what people expect. But I also realise that our reality with Audrey isn’t everyone’s reality of living with a child with DS. I’m still keen to spread awareness that she’s everything we hoped for and more, but for this month I’d like to teach people a few important things too. So I’m going to try to cover some topics that people commonly don’t know, questions we get asked or uncomfortable language people use without realising.
1). Language does matter.
When Audrey was first born, I thought people were being petty over “a baby with Down’s Syndrome” rather than a “Down’s Syndrome baby”. But as things have progressed, it does grate when that language comes up. You start to feel strongly that your child is just a human being who happens to have DS. They are not “Down’s Syndrome”, they have it. My mum in particular used to say “just because Audrey is Down’s…” And I had to correct her, because she isn’t “Down’s”, she’s Audrey! This is a tricky one, because I wouldn’t say “a person who is deaf”, I’d probably say “deaf person”, although I guess the preferred term now is “hearing impaired”? So I understand it’s hard to get this language right and no one wants to feel all politically-correct-crazy. But do think before you speak if possible…
You wouldn’t expect it, but often other people with family members with DS are the worst. Just this week I’ve had someone say “I have one the same” (pointing at Audrey) and “My sister had a Down’s kid… They’re so loving, aren’t they?”. Yeesh.
Oh and when you are referring to other children and discussing my child with DS, those other children are “typical” children, not “normal” children. Obviously it’s uncomfortable to imply Audrey is abnormal!
Children with Down’s Syndrome have lots in common, due to the condition (and I’m going to cover some of those things in this post), but they are all different. Just like typical people. Crazy, eh? People who have Down’s Syndrome are people. So they can be naughty, they can be into heavy metal or be gay – yep, just like typical people they all have different thoughts, feelings and interests. So they don’t all love cuddles (although luckily Audrey does, phew).
Again, I might get asked “When do they expect her to walk?”, “Has anyone been able to give you an idea of how mentally able she’ll be?”. I appreciate the interest and I know people mean well, but unfortunately all we know in general is that she will be on a slower learning curve than typical kids, but even that could be smashed… Audrey was the first back to front roller in our group for example. But she’s 26 months old and still not walking, so how about we just see how she gets on and not over analyse, ok?
3). Low muscle tone.
Now, this is something I had no idea about pre-Audrey. Babies with DS usually have low muscle tone, which means they are a bit “floppy”. This results in a delay in physical milestones such as sitting up unaided, crawling, walking and the issue also affects the muscles in the mouth (the tongue and palate etc), which also makes it trickier for speech development. This is a useful one for people to understand as it would be nice if it wasn’t a shock that Audrey still isn’t walking. I also think it’s useful to know it’s not that Audrey hasn’t figure out how to walk, it’s that she physically doesn’t have the muscle tone to stand and walk. She’ll get there, it’s just going to take some work. In the meantime, the bottom shuffle is epic.
4). Learning difficulties.
Most people associate this with Down’s Syndrome. In general they will be a bit behind typical children, but beyond that we can’t predict how Audrey will progress with any more accuracy than you can decide at 2 years old if little Tarquin is going to be a brain surgeon.
One good thing about a recognisable condition such as DS; there’s so much research and history, that professionals know what works in terms of teaching. Kids with Down’s Syndrome typically enjoy reading and are visual learners. I’m told by Audrey’s special educational needs practicitioner that many children with DS start school ahead of their typical peers in terms of literacy, as they will have had so much focus and attention on that area and generally respond well to books.
I feel like I’ve gone from worrying about Audrey’s academic future, to feeling excited by it!
5). Being Mongolian.
The Mongolian thing just amuses me. Not long after Audrey was born, I looked up the term “mong” because I remembered it as a derogatory term used in playgrounds when I was younger. I knew this was a term used for people with Down’s Syndrome, but I didn’t know why. When I found out why, I just thought it was ridiculous. John Langdon Down (the man who first classified the syndrome, finding the shared characteristics), thought that people with DS looked like the Mongolian race due to a similar physical appearance and labelled them “Mongoloids”. It just feels a bit ridiculous now, “Ooh you look a bit Mongolian…”. Clearly, the term moved on from a classification to become a term of derision and abuse and I would be appalled if anyone called Audrey a “mong”, so please don’t take any of this the wrong way.
Ted and I have often joked that our genes plus a dash of Mongolian = one beautiful baby. The Mongolians should be flattered.
So what are these exotic features… Well, it’s almond shaped eyes, a button nose (sometimes quite flat), the crease under the eyes and small ears. Possibly also the fact that people with DS are generally quite short, with shorter limbs?
Poor Audrey, Daddy’s not exactly a giant, but I’ve got serious shorties on my side, so she was never going to compete with Naomi Campbell on height. My mother is under 5 feet tall!
Anyway, I’m going to leave it there for this post. I hope some of it it was useful/interesting… But if you take anything away from Down Syndrome Awareness Month, let it be this; people with DS are similar in some ways, just like the human race is, but they are also individuals. We never know what to attribute Audrey’s qualities to. Is it because she’s;
A child with Down’s Syndrome?
Her own person?
A 2 year old?
Influenced by nursery?
Nature nurture blah blah blah… She’s just Audrey.
3 thoughts on “Down’s Syndrome Awareness Month 2015”
She’s beautiful and lucky to have you in her corner! I’m working to create an online community for special needs families and individuals. It’s a new blog, I’m still learning the ropes…Please check us out when you have a free moment! https://providencefamily.wordpress.com/
My first comment on your wonderful blog: I’ve definitely been guilty of some of these especially saying “normal” (cringe).
Keep em coming! X
Don’t be silly, you’re one of the best ones! Even I slip up regularly, normal vs typical, I have to work hard to remember that one, but definitely don’t want to use normal. We are all weird anyway, no one is normal! X