One minute and a learning disability – 26/02/19

One minute and a learning disability is all that stands between me and my twin sister, Emily. This meant that my leaving home to go to university was a big shock to Emily’s system. Emily has A-typical autism with developmental delay meaning that she needs more support in order to help her understand tasks and the world around her. After discussing how I left home, Emily told me, ‘You going to uni was really overwhelming and hard at the beginning but over time it has become easier.’ I continued to ask her about how she thinks I help her when I am at home, and she replied, ‘You help me learn new words and become more independent and even help me when I’m having a bad day.’ I am pleased that Emily sees me as more than just her sister, but as her best friend too. However, it cannot be ignored that in addition to this I am also a teacher, a therapist and counsel.

Before I came to uni, my parents and I had to introduce the idea of me leaving home as something fun and exciting, in reality the prospect of me leaving could have been very distressing. Cleverly, in order for Emily to get used to the idea of me leaving, she went shopping with my mum and bought bits for me to take away with me. Every time Emily comes to my uni accommodation, she boasts to my friends of how she bought all of my kitchen utensils. It brings a smile to my face every time because I know she sees me being at uni as a positive experience in this instance.

After I left home, it was important to find a balance between having space to let us grow individually whilst keeping regular contact. Even in my third year at university, Emily hasn’t told me important things going on in her life because she thinks I’m too busy to talk to her. Every time I message or call, I have to reassure her that I always have time to reply to her messages or give her a call. Emily is very emotionally intelligent and self-aware of the fact she is autistic and doesn’t like to be a burden. Emily told me ‘It is difficult to understand what is going on in people’s heads and I try to understand what they’re feeling but it is quite hard.’ University has changed the dynamic in our household, Emily has regressed slightly and told me ‘at times being autistic is very difficult’. The National Autistic Society (NAS) state that ‘people on the autistic spectrum may find social situations and change a challenge, sometimes leading to extreme levels of anxiety.’ Leaving home was an inevitable change, but I still feel bad for moving away and causing Emily stress as a result.

Often Emily has not felt comfortable telling my parents about things that upset her, and will only tell me. Once I came home from uni and she confided in me that her taxi driver had shouted at her, and that this had happened regularly. The slightest rise in your tone can trigger Emily to break down and refuse to speak. In this situation, Emily had not been dealt with in a sensitive way, which had caused her great upset. The NAS state ‘Every person on the autism spectrum is different. It can present some serious challenges – but, with the right support and understanding, autistic people and their families can live full lives.’ It is so important that people with autism are treated in their own autonomy, and not as a child or unintelligent. The challenges they face in everyday life are incomprehensible to everyone around them.

Going shopping with your sibling is fun and exciting, but when I go shopping with Emily I am presented with challenges that most guardians struggle with. Emily is unable to go on public transport by herself. When we go shopping together, I have to remind her which bus ticket to ask for, give her £5 so she can give it to the driver and receive the change back. Whilst I buy my own ticket, I let her go ahead to choose us two seats to sit at. However, sometimes this choice is overwhelming, and she waits for me to help suggest where to sit. It is making small decisions such as these that will increase her self-confidence and make her feel that she is capable of making her own decisions.

Seemingly simple tasks like buying new shoes will cause Emily great distress. Entering a shoe shop, full of loud sometimes angry customers and busy employees is very stressful. Especially when she is aware that she has to make an important decision. It is hard to get Emily to try on new shoes in a shop, and then say if she likes them or if they fit correctly. Emily will often cry because she finds the process too overwhelming. However, as we’ve got older, Emily has become comfortable shopping with me. But only me. Going to university put a spanner in the works. It was one step forward for me, but two steps back for her and her development. For a long while after going to university Emily would refuse to buy new clothes or go shopping. Over time, Emily is now able to go shopping for jeans with my mum. But shoes still present their own challenge.

When Emily needs to go to try something on in the changing rooms, I follow her, grabbing any random item of clothing off the rail so she doesn’t feel like she’s a burden and I’m waiting for her. I’ll let her take as long as she needs to feel comfortable in what she is wearing, and I let her take even longer when deciding if she likes it enough to buy it. Yes, I find the whole process tedious and annoying, but seeing her smile when she feels confident in what she wears is worth it. I like that with me she feels confident to go out and try new things. I like treating her to a hot chocolate or a surprise trip to the cinema. I want her to know that even though I am away at uni that I love her and want to spend time with her and that she could never be a burden to me, even if I have to wait in changing rooms with her.

More recently, introducing my sister to my boyfriend presented a new challenge, much like how we introduced Emily to the concept of university. We had to introduce my relationship to Emily so she would see she was gaining friend, and not losing a sister.

Being a parent is an uphill struggle, and after speaking to my mother, it has become more apparent that being our mother is challenging. Claire Barrett (my mother) disclosed to me that ‘It’s not easy being a mum of twins at such different stages in life.’ She told me how Emily was once I left home, ‘she found it hard when you first went to uni, so we came to see you often.’ I continued to ask her about Emily’s progression which led to Claire clarifying, ‘She is progressing on her own but the difference between you is constantly growing. You are an adult. Emily is too but not to the same degree. She is restricted in that she can’t go anywhere by herself’.

My relationship with Emily has definitely changed since I have left home and come to uni. I have matured, learnt to deal with my own finances and live away from home. As I am doubtful that Emily will be able to gain paid employment or live by herself, it is hard to think that she will never get these same experiences. But for now, we can only wait and see how she develops further.

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