Down-syndrome

In New Zealand, one in a thousand babies are born with down-syndrome. Thats more than one baby per week. Down-syndrome is an incurable condition that cannot be prevented and can happen to anyone, no matter the race, religion, culture, female or male, absolutely anyone can be born with it. We’ve all seen down-syndrome people before, no offence to anyone, but they’re usually pretty easy to pick out. Those happy-go-lucky guys that don’t seem to have a care in the world. They’re usually diagnosed around the time of birth, or in their infant years. Down-syndrome simply means that the person has an extra copy of their 21st chromosome, found in every cell of their body. Down syndrome people look a bit different because they have different muscle tones and they usually tend to look very much like their parents or siblings. Not all down-syndrome people have the physical traits associated with down-syndrome. In my family, I have two down-syndrome relatives. They are both on my Dad’s side, one of his brothers and his sister, my aunty and uncle. If I hadn’t told you, you wouldn’t know that they are down-syndrome. They both look, well, normal.

I’ll start with my uncle. When he was about 10, my grandparents sent him to a school for special needs kids in the Hawkes Bay, Hohepa. Hohepa is a place where both kids and adults with special needs can go to to live and have fulfilled lives. My uncle has spent a large portion of his life there, where they have a farm, gardens, daily activities and promote any sort of hobby that they might have. They are pretty much constantly monitored and live in houses of about five and they usually have a specially trained couple looking after them, sort of like a small family. But my uncle is different, he’s very moody and has random, physically violent outbursts where he will use every curse under the sun and when he does, you better not be in his way. My parents had always tried to help me understand this, but as little kids, none of it made sense to me or my little brother. I remember going to my grandparents house one weekend, just after my uncle had spent a couple of days there as a break from Hohepa. The first thing I noticed when I walked in was the fist sized hole in the wall. I think that was when I began to understand more about him. My uncle spent three weeks staying with us one summer, he really enjoys working on the farm with my Dad. I remember that our household was pretty much on lockdown, we had to set a routine for him. Everyone went to bed at the same time, we couldn’t go out for dinner to see our family friends. I’m not gonna lie, it sucked. This has made it pretty hard for my whole family as we have to watch what we say and do in front of him. When I was younger, I used to be embarrassed to go out in public with my uncle, what if he had one of his outbursts? Well, one day he did, he simply stood up from the outside cafe table that my other uncle and I were sitting at, threw his favourite pair of sunglasses in the bin and stormed off around the corner. Understanding more and more about my uncle has helped to realise that everyone is different, no-one is perfect because everyone has different perceptions of perfection. Some things in life can’t be controlled, no matter how much you try. ‘Onwards and Upwards’ is a quote that I try to adhere to, and in doing this, I have learnt not to dwell on the bad things that happen in life. For me personally, it just tends to be the little things that you think matter a great deal to you, and most of the time, they come with a second chance. However, I’ve found that by thinking more about the bigger picture, this doesn’t effect me so much. My uncle has also taught me to be more thankful. Thankful for the life that I lead. I think many of us take it for granted, that we are who we are. I mean, we could have been born into the slums of Africa, where poverty, malnourishment and disease are a part of every day lives. This has made me realise that I have to make the most of my life, as far as I know, this is the only one that I get. One of the biggest opportunities I’ve ever had is being able to come here to Wanaka but the opportunity to come to MAC didn’t present itself to me. The idea of coming was given to me by someone I hardly knew, and I did a bit of research and then brought the idea up with my parents. I remember coming home that Friday night and spending a solid three hours trying to convince my Dad to let me come down here. Somehow it worked and here I am. I suppose what I’m trying to say is that I believe that everyone should not just let opportunities present themselves, but should go out and find them as well.

Now, my aunty is also partly down-syndrome as well, but not as much as my uncle. She is able to live by herself, cook and clean, and she has a job at a local school near to where she lives but she doesn’t get paid. She went to normal schools when she was little, Waikato Dio as a boarder for high school. My aunty is very different to my uncle, in that she is much more emotional, not as mentally limited and is able to lead what most would call a stock standard life. She used to babysit my brother and I a lot. Mum would tell her we had to be in bed by a specific time and all of that kind of thing. She was pretty good at following what Mum would ask her to do and she has always been good at that. When we were little, she treated us like we were little, which was good. But even now, when my brother is 16 and I’m 18, she still tends to treat us as though we are still 10 years old. It’s just little things, like “you should be in bed by now”, or “you can’t eat that, it’s not dinnertime yet” and my brother and I find it really frustrating. Personally, I think of it as her parroting anything that mum or dad will tell me and brother to do. Aside from all of this, my aunty is a member of my family, someone whom I love and cherish. Like my uncle, she has taught me that everyone is different, and that can’t be changed. Some people think that being different can be a bad thing, others think it is good. Personally I believe that it is a good thing, because I think that being different proves that you don’t follow the norm of todays society and that you think outside of the box.

As I’ve grown, I’ve come to understand both my aunty and uncle more and more, and this has made me realise that I’m lucky to have them both in my life. They have both helped me to realise that I’m not always going to reach a level of perfection. Every so often, I might just make it to that bar, but that’s not guaranteed. Over the years, this has helped me to better deal with disappointment and failure, but also taught me to never stop trying. I think this is one of the biggest factors in life, perseverance. They have also taught me that being different is a good thing. Not everyone should be the same, I mean, can you imagine a world where everyone is the same? I’m going to leave you with a quote from some famous American musician called Brantley Gilbert who I had never heard of until I googled ‘being different quotes’. He simply stated, “I like being different, and so should you.”