DS101: What I Have Learned

I can’t believe it’s almost the end of March. Oh, I had such good intentions, blog posts all planned. Alas, whilst it was a month not well documented, it was one well-lived 😉

So far in March, we have celebrated the birthdays of two of our little Loves – Charlie turned three on the 18^th, and Nicholas was one on the 20^th. We travelled to Melbourne for a beloved family member’s beautiful wedding and were thankful to stay a little longer to soak up the city’s fabulousness while we were in the neighbourhood. Although we were all a little weary on our return, we had a wonderful 10-day trip and were very proud of our three little travellers. To add to the busy month, our house is currently undergoing some minor, but pretty exciting, renovations. It’s all happening in the Love household.

Another special event on this month was World Down Syndrome Day on 21 March – a date very suitably chosen because Down syndrome occurs when there are three copies of the 21^st chromosome (3:21). This year marked the 8^th anniversary of WDSD and, as of 2012, this international awareness day is now officially observed by the United Nations. There have been loads of events happening all around the world, some running with the theme of lots of socks, as well as lots of great blog posts (like this very thought-provoking one on action) and video clips (like this one and this one) dedicated to Down syndrome.

Last year on WDSD, I was in hospital with my newest favourite person with Down syndrome, as Nicholas was born the day before. This year, we were away from home and local celebrations but I didn’t want to let it go by without acknowledgement, albeit belated, so I just wanted to tell you about a couple of things I have learned about Down syndrome over the past year. I don’t want to re-hash everything you could find if you Googled Down syndrome, but here are some things we didn’t know we would ever need to know…

* In Australia and in the US, the correct name of the diagnosis is Down syndrome. There is no apostrophe (Down). The ‘s’ in syndrome is not capitalized (syndrome). In the UK, it is still known as Down’s Syndrome.

* We choose to use ‘people-first’ language that focuses on the person, rather than the diagnosis, but it’s not just about being politically correct. Language is such an important tool, especially in breaking down stereotypes and ensuring everyone is treated with respect. For example, we would say ‘a child with Down syndrome’ rather than ‘a Down syndrome child’ or ‘Downs child’. We say that Nicholas ‘has’ Down syndrome, not that he ‘is’ Down syndrome or that he ‘suffers from’ Down syndrome. He also has blonde hair, blue eyes and a killer smile – all features that make up who he is, but they don’t define who he is. And, just quietly, this baby is not suffering from anything except being ‘dangerously cute’ (as quoted by his speech therapist ;).

* As well as WDSD, in March, there’s also an annual day of awareness for the hurtful use of the r-word. If you haven’t considered how this or other offensive words may make people with a disability (or those who love them) feel, I think Deanna summed it up beautifully with this blog post. Please, give the r-word the flick for good, let’s get more creative with our vocabulary and encourage other people you know to do so too.

* While the chance of having a baby with Down syndrome does increase with maternal age, around 80% are born to mothers who are under 35 and 20% of these are under 25.

* People with Down syndrome are often referred to with platitudes such as being ‘always happy and loving’. While our gorgeous boy is particularly happy and resilient, I put this more down to a requirement of being a (sometimes neglected) third child rather than having Down syndrome. As with any child, each individual is different and unique and able to demonstrate a multitude of emotions!

* There can be physical features associated with Down syndrome, such as low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. Another feature is something called ‘Brushfield Spots’, which a friend of mine lovingly calls ‘stars in their eyes’, which Nicholas has. While there are similar features that enable us to see someone has Down syndrome, someone with DS also inherits physical traits from their parents and often look a lot like their family members.

* While I know that it is said with love and appreciate the compliment, we are not special parents because we are parenting a child with ‘special needs’. We are not even remotely amazing. We are just parents doing the best we can for our three beautiful boys. I read a quote recently which resonated with me – “God doesn’t give special needs kids to special parents. He takes ordinary, imperfect people and gifts them with his greatest treasures. And therein he creates special parents.” Hmm, now ordinary and imperfect… sounds much more like us 😉

And, finally, we have been blown away by the overwhelmingly positive response to the article on Down syndrome that Nicholas recently appeared in. On our return from Melbourne (and with no food in the house!), we went to a local café for breakfast and were greeted by the restaurant manager, who was very excited to see his favourite ‘famous baby’ and show us the current edition of qweekend. As well as being mentioned in the Editor’s Letter, the qweekend had also published a whole page of letters written in response to the Chosen Ones article. The article has raised some interesting discussion and debate, but I also feel that the DS community (especially locally) is feeling quite uplifted by the article and the positive response, which is great. Here is a scanned (PDF) copy of the Editor’s Letter and page of Letters to the Editor. And, if you haven’t seen the original article, there’s now a full version available online or you can download a scanned copy here.

March has been a busy month with much to celebrate. A month to celebrate birthdays, a wedding, a holiday, and the beginnings of a more comfortable home to live in. It is also a great time to celebrate individuals with Down syndrome, but let’s take it a step further to celebrate a world rich with diversity and encourage acceptance and inclusion for every individual.

*Sources: www.ndsccenter.org, www.dsaq.org.au