Why Bother With Awareness? {guest post}

As often happens these days, I first came across Leticia through social media. A mutual friend posted a link to one of her very first blog posts and I found myself reading her words and nodding, like she had somehow captured my thoughts, however far more eloquently. While we have different stories, there are so many shared feelings and experiences, one being that we are both mothers of very spunky, blue eyed two year olds with Down syndrome. I am in awe of Leticia’s ability to weave stories of her life with Wade into being a powerful advocate in the Down syndrome community, and I am honoured to share her words with you as the first guest post in Down syndrome awareness month. ~ Annie x

For me, the word ‘awareness’ always conjures up images of other ‘in-speak’ words that seem to say nothing at all.  I’m thinking words like ‘strategies’, ‘resources’, ‘support’. People use them all the time but when you first encounter them, no one can tell you what they actually are!  When people raise money for a charity, petition a government for policy change or speak out on the injustice of a particular scenario, the end result is a clear tangible thing that people can measure.  Awareness is a bit more vague.  When people embark on an awareness campaign, is it enough to just get people talking or is there more to it?  This is why I think Down Syndrome Awareness Month is important and why we absolutely should bother….

I first entered the Down syndrome world three years ago when I was pregnant with my one and only…..Wade.   My understanding of what Down syndrome meant was next to zero.  I had some wafty notions of happy people who didn’t cause anyone any harm and I knew it wasn’t a death sentence but I hate to admit, on a subconscious level, I felt that people with Down syndrome were separate from the rest of us….grouped together by a collection of features.  I felt that this condition was not a reason for me to terminate but I never truly understood Down syndrome until it became a part of my world.

The first step towards awareness is being thrown head first into a world you know nothing about.  During my pregnancy, I read a lot about Down syndrome.  I actively went looking for information that would tell me exactly what to expect and exactly how I was going to do this.  I read stories from other parents, medical articles and feel-good pieces galore.  It opened my eyes to what Down syndrome might mean for us and I started to realise that everyone with the condition is different.  They are their own person with their own hopes and dreams. No one would be able to tell me what to expect.

Of course I worried.  I worried that he would not be accepted, that only we would see the beauty in him.  I worried that without the same skills as everyone else, he might never be able to make it in this world.  I worried about a lot of things because this was all I ever knew about Down syndrome when I received my results and had to decide how I felt about it.

The next step of my awareness was to live it. After Wade was born, I stared into those big blue eyes and I was in love.  As soon as he was born, he clung onto to my finger and stared deep into my soul.  We had connected many times during my pregnancy when feelings and emotions washed over me.  I’m sure all those pregnancy hormones explains some of it but there were other times when we were speaking to each other… without a doubt.  The moment we laid eyes on each other, it all made sense.  He was my son, he was just him.  Yes, he had Down syndrome but that wasn’t all of him.  He was a person and who he would become would be partly how he was raised and partly just who he is.

We had decided before he was born that we would not let Down syndrome limit him. We would raise him as we had always intended to raise our kids.  We would have high expectations and we wouldn’t presume he couldn’t do things. He was our first born so we imagined this would be a lot of making it up as we go along!  Combining knowledge about Down syndrome and what aspects may make a difference to his health and development, with a deep seated desire to let him be who ever he will be, has worked really well for me.

Loving him and letting him show us who he is and what he can do has changed my awareness of what Down syndrome is.  It is not ‘other’.  It is nothing more than an extra chromosome and what that means for someone with the condition varies as wildly as not having it.  Yes, there are similar features – it wouldn’t be called a syndrome unless there was – but, the long list of possible characteristics or health problems presented to parents at diagnosis cannot tell them what their child will be like.

It makes sense that parents and people with a connection to our community need to know about Down syndrome but why is it important for the rest of society to understand too?

Because our kids are going to live out in the world.  They will be setting out to achieve their goals alongside everyone else.  Parents and advocates can move mountains to give our kids opportunities and skills at home but if society puts those mountains back in their way as soon as they leave their front door then we are all working twice as hard.

We need society to see our kids and our members the same way that we do.  If outdated stereotypes are allowed to persist, then schooling is harder, work opportunities are harder, accessibility is harder and more problematic than it needs to be.

For example, speech and language can be one of the more difficult hurdles for people with Down syndrome to overcome.  Some people may have speech that is hard to understand, a limited vocabulary or they may be non-verbal.  What people may not know, is that people with Down syndrome usually understand a lot more than they are able to verbalise.  By raising awareness of this fact, I hope more people understand why this might be the case. Having an intellectual disability doesn’t mean a person won’t understand anything. I need people to know this so, when Wade is older and out in the world, he won’t be dismissed and ignored if he doesn’t have the language to be understood. If people know Wade understands them, they might take a bit more time or find another way to interact.

I bother with awareness because I want people to be so aware of Down syndrome that they stop seeing it. I want it to be so boring and uninteresting that when they meet Wade they see him for who he is…not what they think he is going to be like.  I want them to see his beautiful eyes, his wicked sense of humour and his love of life….to see him as included, not ‘other’.

Leticia is a writer from Melbourne and you can find her over at her blog, Embracing Wade, talking about serious advocacy stuff and not-so-serious toddler stuff.  Sometimes she even tries to make people laugh…usually at her, not with her. She is also mother to Wade, the funny, charming little two year old who she wouldn’t change for the world.