Jasmine is a sibling to a younger brother, Aaron, who happens to have Down Syndrome. It’s always an eye opener for me to read experiences from siblings given a big fear of mine is how Arjun will cope with Saajan’s diagnosis. Below, Jasmine shares her experience of having a younger brother with Down Syndrome – it’s so comforting to me to see that naturally the journey will have it’s ups and downs but ultimately a siblings bond is forever strong – regardless of an extra chromosome! Jasmine shares how Aaron has enriched her life and also provides an insight in to how it was to have a brother with Down Syndrome within the Asian community 25 years ago.
My baby brother is not so much a baby anymore he is 25 and a very special person! Living with Down syndrome is not always easy Aaron and our family have been the topic of many peoples conversation, we have had peoples staring & pointing especially within the Indian community. For my elders this was a lot harder to deal with being 25 years ago and many people where scared anything different or the unknown. They saw Aaron as a burden rather than a blessing and would keep telling us that things would get better even though they has no idea about Down Syndrome. But we took this as an opportunity to educate and break down some barriers in our community.
Aaron has always been different but as a family we never cared about his differences we weren’t always sure what was best for him and his development but took the view that to treat him the same. Encourage him, love him, teach him and tell him when he was wrong (not that he ever wanted to hear this). As the years have gone by and the world has become more accepting of the downs community it has become easier as there are more doors that are open for him and more support for us.
Unlike many other families in a similar situation to us, we always had someone to take care of Aaron, be at home with him take him and pick him from school. We had constant family support and it was actually quite a challenge to give Aaron his space and independence because we had become so use to him needing us. So when he was ready to go to Asda himself and get the bus to go into town it was quite a shock. What I learnt was that we didn’t give him enough credit for how much he has learnt from watching us and how smart he was in putting it altogether.
Just like every member of our family Aaron has a big personality of his own; he is very cheeky, competitive he is super sensitive and loving he is a force to be reckoned with. And just like everyone else Aaron has hobbies he is a die hard Liverpool supporter with his own season ticket, he plays football once a week and much to my families surprise & delight he loves to bake and he is very good at it and is now the official family baker for all special occasions The love that Aaron has is unlike any other that I have known, he doesn’t understand how to put conditions on love which is so beautiful.
Aaron has been through more in his life than most people I know and he is one of the happiest people, he wakes up every morning with a big smile on his face. When Aaron was born it took the doctors a little while to tell us that he had down syndrome (it wasn’t very well recognised back then) and we didn’t have a clue what it meant to have downs syndrome . He was also born with 3 holes in his heart so for the first 18 months of his life he was in and out of the hospital (mostly in). Then when he was 11 he got lymphoma which he fought and now has been cancer free for 11 years! But through it all he smiled and picked us up when we are low and gave us the strength to carry on…
I could list of all the things that I love and admire about my baby brother but if I had to name just one of my favourite things it would be that he doesn’t care what other people think of him he does what makes him happy. At every single party he truly is the life and soul of every party, he is the first one on the dance floor before the food has even been served and will stay there until the lights come on. The more interaction I have with other people with Downs Syndrome I have found that this is a trait that many of them have and he has slowly made me see the world just as he sees it.
There are many moments that I have so much guilt, because I get to do things that he is unable to, I take the smallest of things for granted that can be a huge challenge for Aaron. Being my baby brother he always wanted to do everything that I was doing drive, get a job, go out, go on holidays with his friends which of course is so natural but it isn’t as easy as that. When I got my first job at 16 and started to make some money he use to say to me I’m going to the same thing when I turn 16! Of course this was not the case but when he turned 22 he did it! He got a part time job at his college helping the new students settled in & I have never been prouder of him! He is still working and volunteering keeping very busy. This has allowed Aaron to have the ability to manage money, make his own relationships outside of the family and generally getting a lot more independent.
Honestly, I know how truly blessed we are as a family to have him in our lives I would not change him for the world. Aaron has taught me how to be a better version of myself, how to love and be kinder and to see the world with a little more beauty just as he does. So my advice to anyone that has a loved one with Downs syndrome is embrace the differences because there is much you can learn from one another. I know that sometimes it can be scary because you want to protect them but give them their independence and ensure you teach them how to be independent.
For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.
