I’ve come to realise that the challenges we run into in life are often not the ones we think we are going to have. This is certainly the case as I watch my little boy run off to school, pushing me away as he is determined to navigate everything by himself. “I go myself” is his favourite sentence of the moment. He wants to be a big boy, he is independent, determined and confident and he wants to prove that he doesn’t need help. Other parents comment on how grown up he is, his quest for independence influencing the other 6 year olds in his class and even inspiring other parents to let go just a little.
I can tell you with certainty that when I lay in my maternity ward after discovering that my tiny baby has Down Syndrome, this is not the picture that was either given to me or the one I had in my own head. In fact, it is so far away from that picture that I wish I could go back and hug the sobbing mum that I was back then and tell her that the future will be so much brighter then she could have imagined.
I’m not the only one who has been caught off guard by Noah’s ability and perseverance. People approach me with surprise all the time because he is doing something that people don’t expect from a child with Down Syndrome. That could be anything from standing tall, walking by himself, using a word, navigating the swimming pool, coming down a slide or just the way he eats a Pizza in a restaurant. When travelling over the summer, we regularly had strangers comment on his ability. They would stare at him and eventually make comments like “Wow, he is so capable” or “so normal”. It’s easy to get upset about how people use the term, but the reality is that people do not expect Noah to do these things that they perceive to be “normal” with independence and ability.
Over the summer months, we spent all of our time on campsites around Europe which brings a level of safe independence and exploration for children. Small things like trips to the bathrooms to brush teeth or take a shower. The kids walking up to the small shop onsite to buy the bread in the mornings or get tokens for the washing machines. Helping with the wash up in the communal sinks. Going to the small playground together. All of these small steps have given Noah and his big sister a great sense of ability and independence. Every day as he wandered to the bathroom block with his sister, their toothbrushes and towels in hand, people would comment on how great they are. Children all over the campsites were doing the same things but people notice Noah because they don’t expect it of him. They are constantly looking for the adult who should be minding him or turning their head to see if somebody is looking out for him.
It is true that children with Down Syndrome need support and have to work very hard to achieve these small steps but we need to start believing in them. How can we expect any of our children, whether they have special needs or not, to achieve anything if we decide in advance that they can’t? As adults, we have such preconceived ideas about how our children should turn out or what they should conform to that we forget to allow them to flourish and be themselves.
This morning, as Noah walked “all by myself” to school (of course this involves me sneaking a few paces behind him, he is only 6!), I couldn’t help but giggle as he waddled along with his school folder in his hand and a little boy from his class shouts from across the road; “Noah, are you walking to school by yourself?”, “Yes, I am” came the proud reply and his little friend looked proud of himself because he understood what Noah had said. While I am often concerned that Noah is vulnerable, his lack of language may exclude him, he might not be understood by others, his friends are delighted and proud when they understand him. Rather then see Noah as weaker due to lack of language, they see themselves as stronger because they are understanding him. They see that Noah is funny and smart. His independent streak means they do not see him as less capable, just slightly different or quirky but in his own confident way and they see him as a little boy playing by his own rules. They are interested in him and he gives friendship back in bucketloads.
How awesome would the world be if we all operated in that way?
I think it’s important to point out that I am not naive or in denial. Noah’s quest for independence brings plenty of other challenges. He needs lots of support and works very hard to reach his potential. We have some difficult times but they are not difficult because we are not happy or because we somehow feel our child is less capable or worthy then any other child, on the contrary, Noah brings nothing but pure joy to our household. Those difficult times are because I am afraid that Noah might find it hard to fit in and find his place in a world that can be very unforgiving. That he might not be allowed to just be himself and be respected for who he is. So I tackle these fears not by trying to make Noah something he is not or push him to fit in, but instead by loving him for who he is, teaching him to be strong, to be a good friend, to conquer the small and more important skills in life, to fight and to surprise people. We are educating the world around us that instead of focusing on somebody else’s vulnerability, we should celebrate the opportunity to learn from their journey and thereby be proud of ourselves for noticing that we have met people stronger and dare I say more interesting then ourselves!