Today I have been fortunate enough to attend a work shadowing at Genius Within, where instead of following my parent around I am being tasked with writing an extract for their blog.
I was given several options on what I could base the aforementioned blog post around; I decided that I would write about life with a sibling with disabilities. My younger sister, aged eleven, has several learning difficulties; Autism, Epilepsy and ADHD, to name a few.
One of the driving forces behind me choosing this particular topic was the fact that the majority of written pieces about neurodiverse family members were written by those who were looking back on childhood experiences or whom were basing it off of adult life. I felt that it wasn’t an accurate representation as it could have been, when looking back on things people have a tendency to forget or to sugar coat. Hence, as a thirteen year old, I wanted to express a different outlook, one that was made in the midst of living with my sister.
When my sister was 3 she was diagnosed with epilepsy, I was 5 naturally, too young to understand what was going on let alone grasp the concept of a disability. However, when she acquired her autism diagnosis I was 8. At this point I was beginning to understand that my sister wasn’t like everyone else. When we would go to playgrounds she would have trouble understanding the social rules that everybody else seemed to immediately understand, not knowing certain social cues that I did. Usually it was fine, not many people want to be mean when you’re a smaller child. Sometimes things would go amiss but mostly it was fine. I would help introduce her and if something went wrong I could explain she didn’t mean anything she had said.
Going shopping was and is hard, mostly for her; even now she doesn’t completely understand the concept of money and only sees the thing she would like. I didn’t understand her melt downs until I was around 10/11. I thought she was being greedy; I didn’t understand that she wasn’t doing this because she wanted whatever toy or teddy it was, but rather that she couldn’t physically, or mentally handle the stress of a trip to a store. The sensory overstimulation must have been unbearable; she couldn’t even explain what was happening. Now we know what to avoid when shopping. There are certain things we do to help make it as enjoyable as possible as she still wants to go shopping. If we are going to get a DVD or a toy we’ll pick it in advance to stop unnecessary trauma when we’re there. We stay away from florescent lights and busy places because we know that helps stop meltdowns.
I love school; I always have, even when young I loved lessons, at secondary school I have great friends and feel at home in an academic environment. My sister was fine at school until around the end of year two, this is when the problems began. For those of you who may not be aware mainstream education work for very few neurodiverse children. I very clearly remember her crying in the cloakroom almost every day of year 3/4 because she didn’t want to go in. They tried everything to get her to go in, but she couldn’t do it. I thought she was being difficult.
My mum and Dad at this point began writing a statement for her, they had decided they couldn’t watch their child deteriorate in the mainstream education system and began the process of fighting for her to go to a special school. They spent almost all their time writing this, I was 11 and thought I knew everything, all I saw was that my parents were spending an unreasonable amount of time on my sister who was only causing more problems. It’s mean but it’s what I felt, at the time I didn’t know any better and looking back I feel ashamed that I didn’t try harder to sympathize.
My sister watches a film every night while she goes to sleep which I hear. I don’t like noise when I’m trying to sleep which sucks. I love singing but whenever I do at home she shouts at me to be quiet, but its okay as soon as she wants to sing. She follows me and my friends around whenever they come round, when all I want is to talk to them alone. But we’ve figured out that if one of her friends comes round on the same day she’ll mostly leave us alone. She pretty much owns the lounge, she will rarely let anyone on the main sofa when we watch telly together and if she does it’s always her in the middle. But it’s ok, you learn which arguments to pick and I’ll sacrifice the optimal sofa seat to watch a film with my family.
I try to be understanding, I always do. But I’m a kid myself. I get fed up, I get jealous, I feel angry and sad and annoyed. I feel like she’s the favorite child sometimes which is stupid, but these feelings build and I’ll get so fed up that I go into some black mood and be awful to her I’ll say these disgusting things that I don’t mean and always, always, regret as soon as I’ve said them. But she always forgives me, no matter what I’ve done, what I’ve said. She is so unassumingly loving and kind, it amazes me.
I’m always going to have days where I’m mad at her; I’m never going to be able to be calm and reasonable all of the time, that’s impossible, I always have people to talk to if it gets too much. I have a great support network of close friends and family who are ready to listen if I ever need them. But I have to know that I live in a society that is built for me, my sister doesn’t. She lives in a world that doesn’t know how to help her succeed, that from a young age has made her feel worthless. She sees me succeed and wonders why she can’t do that. She hurts me sometimes and maybe I have to put up with things my friends don’t, but my little sister is one of the bravest people I know, I love her no matter what I say. And she deserves to have a future in a world that accepts her.
Thank you for reading.