Sure, I’ll admit that Ella has Down Syndrome but I have managed to completely separate that aspect of who she is from the reality of what life will look like for in her in the future: from the way that she will be treated when she goes into Kindergarten next year to her adolescence to her independence as an adult.
In my mind, there is nothing that Ella can’t do. If I see an adult with Down Syndrome who is for the most part non-verbal, or obese or completely dependent on his or her caregiver it doesn’t bother me because I say to myself, “no, Ella will not be like that.” I write it off to the fact that Ella has had the benefit of early intervention and few health problems up to this point (knock on wood) whereas those individuals might not have had those benefits. But even more immediate than that, I feel no need to explain to children (my son included) what Down Syndrome is. I hesitate to point out differences or try to explain why Ella doesn’t speak like other children her age. She may not speak but she still knows how to play, make art, sing, laugh and cry. Sure, she has trouble sitting still or paying attention, but don’t all four year olds?
I know the gap between Ella and her peers will grow as she grows but I wonder at what point an explanation is needed or beneficial. More than anything, I just want Ella to be accepted and loved. I want her to have friends and sometimes I feel like drawing attention to the ways she is different will take away from the ways she is the same.
At home we treat her like a typical four year old…(albeit a second-born four year old) and I expect others to do the same. I put her in ballet with typical kids, she is in preschool with typical kids and I have just registered her for Kindergarten with typical kids…French immersion kindergarten at that because Jakob, my “typical” child, is in French Immersion and the lazy part of me doesn’t feel like having my kids go to two different schools. Am I in denial? Maybe. Am I crazy? Maybe. But it doesn’t mean that I don’t think awareness is important.
So when does awareness start, where does it start and why does it start?
Well, I can tell you why awareness is important – because there are so many misconceptions out there about Down Syndrome. People don’t assume that Ella is more the same than different. They assume she is more different than the same and they fear her. But given the opportunity, our children can accomplish amazing things…but they need to be given that opportunity. They need to be given the resources to build their skills their way, which is often not the way of mainstream schools. Tools such as speech therapy or early reading programs so when they are allowed to be more the same than different in a classroom, they have the tools that they need to learn the way we “expect” children to learn.
And I can tell you where it starts – it starts with us. It starts with the way that we treat people that are different than ourselves. It starts when we respect, accept and love those that look different, talk different and act different and it starts on every street, in every school, church and workplace. It starts when our children are quietly, unsuspectingly watching us.
And it starts now. I may not be very explicit with my explanations or excuses of why Ella is the way she is, because quite frankly, at this point, I don’t care…and I hope you don’t care either.
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