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10 Things My Sister With Down Syndrome Has Taught Me in Her 21 Years

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My younger sister is a character, a joker and most importantly very intelligent. She also happens to have Down syndrome and autism, and as she turns 21 this week I have been reflecting on what she has taught me over the years the good and the bad.

1. Who cares what others think. Possibly one of the most important lessons is not to waste time and energy on the funny looks and comments that get thrown your way, especially if you are with a disabled sibling. We as a family have faced many especially when my sister had a meltdown or acted out of frustration. Of course they would get to me but now I don’t care. Who are they to judge?

2. An unconventional family has its benefits. Our family never had the traditional set up and yes, that had its frustrations, but it also had its benefits. We as a family had a different type of relationship and bond, one that I quite liked. My parents seemed more open and easy to communicate with; we had understandings about things other families didn’t, I found myself being very honest with my parents, and they with me.

3. Sibling jealousy is a thing. Sometimes I was envious of my friends and their siblings. My neighbors were my age and we would all play out in the street together most nights. I remember being so jealous of them, seeing a “normal” sibling relationship and how that worked.

4. You can’t try to educate every ignorant person you see. I battled many times having to stop myself giving a piece of my mind to people that make ignorant comments and sweeping statements about my sister and other disabled people. Truth is there have been a lot of them and while they do wind me up or upset me, you have to learn to choose your battles and hope one day these people will gain the knowledge to think about what they are saying.

5. When you do say something, it’s not always successful. On numerous occasions at school and university I have told people the true meaning of their words in the hope they would realize what they are saying. While some have understood and said they wouldn’t do it again, a surprising amount get a little defensive and try to justify their behavior, usually saying certain words have “different meanings these days” and so “aren’t insults, just flippant jokes.” Unfortunately, the meaning of a word is a meaning of a word, no matter what decade you are in.

6. A different kind of love. Having a loved one with a disability brings a new kind of love, a different bond, a different connection. My sister always knew when I was upset, even if she was the one that caused the tears! But without fail my sister, who doesn’t like a lot of hugs or physical contact, always found a way to come up to me, say “what’s wrong?” and then give a hug, wipe my tears or pat my back. It’s a typical thing for a sibling to do, but when your sibling struggles with physical touch, it’s something more special.

7. The many shades of grey in a black and white world. Growing up I saw the world in a more real way. I was surrounded by children and young people with various disabilities through charities and groups my sister was involved with, a world my friends didn’t seem to see because they weren’t exposed to it. It opened my mind. I became more in tune with the insults and daily struggles of people and families left unsupported. I paid more attention to how accessible places were to people, how the wider world wasn’t set up to help enable and empower people with a disability. I saw the unfairness of it all.

8. A wealth of knowledge to last a lifetime. I learned a lot about disabilities from a young age. For a long time it was what I knew best, sometimes more than my teachers. It’s so important to have this knowledge, to be aware because this is how progress is made; this is how the world becomes easier to navigate. I learned about meltdowns. I learned how to communicate uniquely with each person. I learned how to explain Down syndrome to my peers and they learned with me.

9. Makaton. Makaton is a very important method of communication for many people with learning disabilities. My sister needed it when she was a kid and relatively nonverbal. As a child without a learning disability that knew Makaton I felt pretty cool. I knew all these words in sign that most of my friends didn’t. It was like a top-secret language only my family and other siblings of people with learning disabilities knew. But more so, it was essential for my sister to communicate. Eventually she became more verbal and used it less, but we all still remember it and give it a go from time to time. Today there is a big drive for Makaton and sign language to be taught in schools at a basic level; I couldn’t support it more. Makaton makes the lives of many people a lot less daunting, and it’s a valuable skill. What’s to lose from teaching it in schools?

10. She’s taught me how to be a better person. I won’t lie, I have gone through periods of time in my life where I have held resentment towards my sister — but that can happen with any siblings. However, the level of empathy, knowledge and patience she has taught me is invaluable. She has taught me I have a role in this world. She has taught me the importance of being an advocate, to help change the world so she and others can flourish. She’s taught me to look beyond disability, to focus on what’s more important — who someone is as a person, their quirks, their sense of humor, their likes and dislikes. She’s taught me not to patronize people or refer to adults in an infantile way, coo at them and say “aww, bless” at someone you only think it’s fit to because they have a disability. She’s taught me Down syndrome isn’t a terrible scary thing. She has a good quality of life; she’s social, she can make decisions and tell you what she wants, go shopping and loves a glass of whiskey every now and again. She’s just like many other people with Down syndrome and other disabilities who can gain education and employment. They can be actors, models, DJs. They can be advocates, husbands and wives; the world can be their oyster if given the chance.

This is what my sister has taught me.

Originally published: February 19, 2019
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