I’ve kind of missed the boat recently on some of the controversies swirling around in the media relating to Down syndrome. There has been no shortage of blogger fodder for me to sink my teeth into but we have been away on holidays and I haven’t been in the right frame of mind to weigh in heavily on the issues. I tried writing bits and pieces here and there but between intermittent wifi and holiday distractions I couldn’t get going. I did read the hoopla surrounding the comments made by Richard Dawkins and managed to fire off this tweet….
……but as I was trying to craft an intelligent and witty rebuttal to one of the biggest clangers a man of his intelligence could make, it dawned on me…. I was waaaay too busy having fun hanging out in New Zealand as a family, catching up with relatives, going on road trips, kayaking, sight seeing and sledding in the snow. You know….doing all the things that apparently shouldn’t be possible if we let ourselves be swayed by the opinions of people who have no idea what they are talking about. (In fact, according to Dawkins, I should have spared myself the “suffering” of this wonderful holiday and would have been much happier if I hadn’t been so “immoral” as to have given birth to Wade 2 and a half years ago. Gah!)
There have been so many things I wanted to expand on about these kinds of attitudes but the one concept I keep returning to is that of low expectations. The idea being that the biggest hurdle facing people with Down syndrome is the low expectations society has about them.
At the heart of all the recent discussions has been the expectation that people with Down syndrome will somehow be a burden to their families or society as a whole.
The expectation that an unborn baby with Down syndrome will be sick or will develop illnesses in the future.
The expectation that there will be learning or behavioural difficulties.
The expectation that one person’s difficult experience with Down syndrome negates another person’s positive experience and vice versa.
I keep returning to the fact that these expectations, which may be the reality for some families, may not be for others and while the luck of the draw plays a big part, I feel as though the spectre of low expectations sits in the background and has the potential to influence and undermine all the hopes and dreams we have for our kids.
I am a big believer in consuming lots of information from a wide variety of sources, both positive and negative about Down syndrome. I don’t believe that ignoring the information about what may lie over horizon for Wade medically or developmentally is wise. In fact, arming myself with information about potential health problems or developmental challenges can be incredibly powerful from an early intervention perspective but if I am not careful, I can allow the low expectations to creep in. When the stereotypes are allowed to persist and the stories are continuously circulating about all the things people with Down syndrome can’t do or won’t achieve there is a subtle reinforcement of the “this is what to expect from Down syndrome” kind.
I have always prided myself on having really high expectations for Wade. I have written about it a lot before, about how I won’t let him be limited by his diagnosis. During this holiday however, something completely unexpected has happened. Something wonderful and exciting that has caught me by surprise. This holiday has really opened my eyes to how much he is learning on his own. Being in a new environment with new people and new experiences, Wade flourished. For some reason, all the things we have been working on for ages at home, with mediocre success, just started happening! He was saying new words and new sounds. He ate new foods, explored things independently, and tried to solve more problems on his own. We had beautiful weather which we hadn’t seen at home for months and watching him run around wide open spaces, chasing his shadow, kicking a ball and getting more and more confidence on play equipment was a wonder to behold. Having two relaxed and happy parents with the time to let him roam free made a huge difference too, no doubt.
I was also interested in how different he was around family. In the past year his communication has started to develop and he is more engaged and interactive with the world around him than last time we visited. In that time he has taken to pondering people and striking up new friendships with complete strangers but when we are around family, his vibe is different. I doubt he would remember his aunts and uncles, cousins and grandparents specifically but I believe he is very in tune with the way we interact with the people around us. He feels what we feel and reacts accordingly. It’s probably something all kids do…I have no idea, I only have Wade….but when you read so much about the importance of communication and articulate speech with kids with Down syndrome it’s easy to forget that there are many different ways to communicate. There’s tone and presence and energy that we aren’t listening to when we put so much importance on the words and gestures. When the expectation is that people with Down syndrome won’t be understood, do we ignore the other ways someone is communicating with us? I’m starting to wonder if the delay in language development is giving Wade an opportunity to hone other qualities like empathy and emotional intelligence and these are things I should be listening out for just as hard as his ability to form the sound “shh”. (…..although I never tire of hearing him putting on his ‘ooooo’s (shoes) and ‘ock (socks)
As I write this post, I am sitting at the airport trying to kill 5 hours before our flight home. One of the reasons why I have had trouble writing during this holiday is because everything I want to say changes as each day goes by. I wanted to write about how easy he has been to travel with, how his easy going nature has made this trip a breeze but as luck would have it, he has completely cracked the shits this afternoon. We are taking it in turns to wander around and keep him entertained in the hope that he will sleep on the plane since he has refused to do anything resembling sleep all day. On one of my laps of the airport lounge trying to corral him to look at something interesting instead of flopping down on the ground in a sooky tantrum, he just did something he has never done before and something I did not expect him to do for a long time. In the middle of a winge, (then a smile, then a run then a cry….) he signed “toilet” and actually pooed.
I know this sounds like TMI but as any other parent of a child with Down syndrome knows, this is a BIG deal. Why is it a big deal? Because, I expected that Wade would not be ready for toilet training for a long time yet. I had been told that this is one of the things that takes ages for our kids to learn and not to expect him to be trained by the time he goes to school. I know this will not be the case for all parents for a variety of reasons but I want to mention it because, for me, it showed me how easy it is to buy into the dialogue of low expectations. Even though I promised myself I wouldn’t limit him, I hadn’t really tried to introduce toilet training because I expected he wouldn’t be ready. I felt like I was wasting time that could have been spent on other things.
While we were away, his diet was a bit of a train wreck. With his routine off kilter and being on the road etc, I had been opting for convenience over nutrition. One side effect of this was….let’s just say….plenty of olfactory warning signs that a number 2 was imminent. I decided to take the opportunity to encourage him to use the sign for “toilet” when I detected something odorous in the hope that he would make the connection. I didn’t expect it to work. I tried it for a long time in the past with no indication from him that he knew what I was saying. He could copy the sign and he knew that the sign meant the actual bowl but not once did he associate the sign with the action of weeing or pooing. This sign, out of the blue, shows me that he really is learning all the time. That like anyone, with a fresh state of mind and in new surroundings, his brain is making new connections. I had left Australia with the expectation that he wouldn’t know we were on holidays and he would learn the same things whether he was in his own home or another country….how beautifully, surprisingly, excitingly wrong I was. So proud of this little guy and what he is teaching me every day.