Ten days ago we were on a packed subway in Paris. The first leg of our summer adventure, we found ourselves crammed on the subway, wedged between thousands of city commuters. We had spent hours strolling around in the sun, visiting all the amazing sites of Paris and now on our way back to the campsite. I looked down at the little face wedged in beside me. I can’t say Noah liked the Metro, the crowds, the noise, the foreign language, the masses of people and general uncertainty but while looking up at me for reassurance, he tolerated it with the same poise and determination as all the other more seasoned commuters.
Since then, we have visited Paris, Disneyland, Switzerland, France and Germany. We have eaten strange food, chatted in new languages, shopped in unusual grocery stores, walked for miles visiting towns, churches, monuments, tourist hot spots. We have cycled around the suburbs of Paris with Noah perched on the back of my bike shouting “Bonjour” to everybody we pass. We have swam in lakes, taken boat trips, visited friends, toured along waterfalls and parked in campsites.
This is not my opportunity to boast about an amazing holiday (although I will admit it is that!), but instead an opportunity to reflect on how life can surprise you. I could never have imagined when Noah was born that at the young age of six, I would find him perched next to me on the Paris subway. Noah likes routine, it gives him a sense of control. He likes to understand what is coming next. He is a little boy who works hard to achieve what others take in their stride, his muscles sometimes let him down, he works hard on communication, making himself understood and keeping up with what is happening around him. But he has a sense of determination that I admire every day.
It can be hard to get the balance right. As his mum, I tend to be the more protective parent. I often overthink things and I try to plan ahead based on what I think Noah will or will not adapt to. I want to encourage him but also wrap him up and protect him, I want to push him forward but without dashing his confidence. I want to nourish his sense of achievement while also pushing him a little out of his comfort zone. I have to try hard not to translate what he is saying rather then letting him make himself understood. Often steps are pre meditated or with a goal in mind, I want to do the best for him and so I never quite switch off.
My husband is more of a “Just do it” kind of guy. He doesn’t really see the point in overthinking “what if” scenarios. His approach is to get out there and do whatever we’ve planned to do, Noah will be able for it and if he needs help, we will give him all the support he needs and deal with any obstacles along the way. Although it sometimes requires readjustment, I am so thankful for his get up and go attitude and I have come more around to his way of thinking. Surely it’s better to teach our little boy to love to travel, make new friends, try new food, hear new languages, experience new things, challenge himself with daily scenarios he is not comfortable with and watch him beam with pride when he overcomes them. Teach him to swim, walk in the sand, take the rougher terrain and experience the world around him and importantly to problem solve and learn from mistakes.
Admittedly it is not always the easiest option. It can be very difficult to convince Noah to put himself out there, his initial reaction is pretty much always “ No, I dont want to”, the only exception to this being when pizza or television is involved. It is challenging to find the endless patience to take everything step by step and maintain the mode of encouragement. This adjustment in pace effects the whole family. We have to think of Anna and make sure that her needs are met even if Noah is not up for what she wants to do. But it is always worth it and the surprises far outweigh the challenges.
Sometimes I feel uncomfortable writing about such a personal journey and putting my little boy out there but I believe that he can really change the perception of what Down Syndrome means. It clearly does not define Noah and while we have obstacles to overcome, he is not held back by the fact that he has an extra chromosome. If anything we have learned the importance of all the smaller steps we take everyday and we appreciate and enjoy all our successes.
So today as I look for somewhere with WiFi to post this, Noah is sitting outside in the middle of a Plaza in a small town somewhere along the Rhein in Germany, playing happily with local kids who don’t understand a word of English but are fascinated with Noah’s sense of humour and cheeky grin. They say laughter is the same in any language and as I look out at the plaza, it certainly appears to be true.
I have learned that if we embrace life and grab the hand that we’re dealt with positivity, optimism and determination we can educate not only our children but also the world around us. I certainly will not accept that Down Syndrome will define my little boy and as far as I am concerned, so far he is kicking ass!