We are nearing the end of October in acknowledging Down Syndrome Awareness Month.
This post has been on my mind for some time, but it hits such a deep emotional chord that it has taken me this long to come to terms with writing it.
And the funny part is, that it hits a nerve simply because I just haven’t had the nerve to express to those close to me how much this topic burns me up inside. Some might say it’s a reflection of my own inner landscape, while others will shrug their shoulders nonchalantly in order to escape the truth of what lies beneath.
I started a project recently that has been a catalyst for posts like these, and it is my hope that this becomes part of an honest and committed forum to understanding and acknowledging some of these hurtful inner truths. I am a firm believer that people are good, but also that most people in many arenas that they are not familiar with tend to veer towards the “fear camp” as it’s just something that has been programmed in our society for many years.
I am ME (most extraordinary) aims to tell the stories of people…special people in fact that don’t fit in the square. Today we are talking particularly about Down Syndrome, but in fact, we are only talking about Down Syndrome as it’s what I can relate to at present within my own experiences, but I know deep down that this issue spans far and wide across a vast demographic of beautiful and complex souls.
Ruby is my daughter and she has Down Syndrome. She is as equally beautiful, as she is complicated.
When she was born, the various scenarios played out in my head of how things “could be”. One of those things was the fear that she was destined to play on her own and that no one would be kind enough or brave enough to step forward and take a chance on the unknown. And perhaps the fact that I have always been so open about our challenges (the fecal art, the ability to vanish in thin air in public therefore causing manic panic, or the complete lack of fear and boundaries) has not played in my favour, but then again I feel that hiding does no one any good and that by sharing, hopefully we come one more step to owning the real situations we encounter as parents, and not the candy coated fluff that some would have you believe in order to avoid having to face such hard truths.
So here’s the thing…it wasn’t until last year, at the age of 9 that Ruby was asked to go on her first play date. Now, please let’s get clear that this is by no means a sympathy article, and that my main mission here is to give an honest account of my experience, which will hopefully enlighten, and subsequently create awareness around this topic for positive change.
But rather than going into a ‘woe is me’ tale of why I have been deeply hurt and upset that it took over 8 years for Ruby to finally be asked on a play date after school (and let me tell you I nearly jumped out of my skin for joy when it did finally happen!), I would love to share with you the beauty that I have witnessed when someone decided to open their heart and take a chance on having Ruby for an afternoon.
When Ruby finally got a place in her new school at the beginning of the school year last year (after 40 rejections applying to schools in Dubai), I did not feel the urge to jump up and down and thank everyone profusely for accepting my daughter, as to me it seemed ludicrous that there could even be the possibility of rejection. But of course, history had shown me that this was not the case, and so there really was an immense feeling of gratitude when she finally walked through the doors of her new classroom.
And it was truly beautiful. Ruby walked through the doors of that classroom in Year 3 and made like she’d been there all along.
Many connections were formed, but there were 2 little girls in particular who had the most beautiful and genuine bond with Ruby that it took my breath away.
I could swan on and on and sing their praises, but to keep it simple, I can honestly just say that all my fears dissolved into thin air from the first time that Ruby had her very own playmates, with her OWN friends, and not those of her little sister.
We are so, so lucky. Ruby has since been on playdates with her friend Chloe without my supervision, and with her friend Hope with me in tow. I have friends who have children with Down Syndrome, and with Special needs that have never been asked on a playdate. EVER.
And I guess my intention behind this post is to ask you to ask yourself questions “What are my fears around having a child with Special needs to my home on a playdate?” or even “How can I brighten someone’s day and make what seems difficult work?”, or even “Why had I not even considered this before?”.
Because what may seem incredibly hard or impossible, or scary to you, could be the thing that helps change the landscape for others. There is no sense of delusion here. Most, and many children with Special needs will not be asked on playdates or be asked to go and spend time with another family. Why is that? Is it that we as special parents are our own worst enemies and have rationalised how we are the sole carers of our kids, or how no one else would be able to manage our kids, or possibly know their little intricacies or weaknesses?
Or is it just that people really just don’t realise that what they are subscribing to isn’t really that much different (in many ways) from having any other kid over for a playdate? Does it stand to reason that stereotypes have played a part in creating this solitude?
While I can’t really answer those questions objectively, I am acutely aware of the possibilities. And what I CAN share with you is the absolute euphoric joy that has been experienced on all fronts when the boundaries have been let down and Ruby had her first playdate experiences. Nothing short of magic….
Ruby is pictured here with her friend Hope. These photo’s were taken during a playdate at our house, but Ruby has had the experience of going to her home too. There really aren’t too many words to describe what is happening here, but I can tell you the number of times that Ruby has watched her sisters go to a friend’s after school, only to be left behind with me, and of course I feel bad, and then I feel I need to compensate by doing something to take her mind off of the fact that she is left behind once again. Of course it makes me feel terrible, as it does her. That is a fact, and again it is a fact that I share with you in order to stop this charade that we play as parents of children who don’t fit the status quo. Why do we do it? We smile, and we nod, and we say “It’s ok……Ruby wouldn’t be able to go with you as she is prone to wandering”, or “Ruby doesn’t understand that she is not included” in order to make other people feel better. Enough already!
We are doing a disservice to not only ourselves and our feelings, but to our children to not act as their true voice, as we know it HURTS. LIKE. HELL. to not be included. You’ve been there, I’ve been there, and yet we stand here as if it’s ok to not find a viable solution because we don’t want to offend, or upset…because you know what? We are just so damn lucky that our kids got accepted into school in the first place. We should just smile and nod and be HAPPY that at least we have that in our favour. Right??
No way I say…..
Here is proof yet again that these relationships are critical to our evolution as a species, and to our future generation of children who we hope to raise as loving, embracing, and compassionate human beings. Chloe has been a beautiful friend to Ruby and has taken her out with her Mum on several occasions.
So there, I’ve said it. What comes easily to these children (I can honestly tell you this is not an issue for kids, I have yet to meet a child that is not accepting and willing to interact or play with Ruby), is something that we need to open the dialogue to see how things could possibly change. Parents of special people, it’s really important that we are part of this change. It’s time to be more open to the possibility that people are good at heart and do want to find a way to make things work. Whether this means that you accompany your child on that play date in the circumstance where you really just feel it would all be too much, or in the event that you take a ride on active faith that other people are able and willing enough to have your child, even if it’s only for a very short while, there has to be a starting point.
As for those who really just don’t know where to start? Having the intention to understand and see what role you might play in inclusion is a great first step. Talk to parents of children with Special Needs. Ask genuine questions. State your genuine intentions….and wait for the magic to unfold.