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Esther’s story – being a ‘sib’

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A loving sister’s view of the impact of additional needs on her family’s life

When we were young, my brother John was just … well, he was just my little brother John. I knew he had Down’s syndrome. I knew his abilities, his limitations, how to make him laugh and also how to wind him up! But it wasn’t until I was an adult that I began to reflect on how having a brother with additional needs had impacted our family life.

With four children, one-year in age separating each of us, our parents had their work cut out. This meant that, according to our abilities, we all had to muck-in around the house – and moaned if someone, including John, appeared to have an unequal load. I didn’t view John as different from my other brothers; sometimes he was adorable, and sometimes he was my annoying little brother.

While John himself sometimes found it hard to come to terms with his disability, I, too, struggled to accept that he was different. As a teenager battling with my own efforts to fit-in, I was sometimes embarrassed that John behaved in unexpected ways, or couldn’t manage his personal appearance. At other times, though, having a brother with additional needs brought out the best in me. I remember teaching John the days of the week and months of the year, and proudly getting him to demonstrate his new knowledge to the rest of the family. It gave me a great sense of personal achievement to identify and assist with a need that I could fulfil, and even equipped me with teaching and communicating skills that I have used later in life.

As adults, having a sibling with additional needs still impacts my life and the lives of my brothers. In fact, I believe that it has brought us together as a family. My mother has cared for John on her own for several years and, to give her some respite, we take him on holiday each year. Then there has been the challenge of finding John the right place to live. This has proved much harder than any of us imagined, and we’ve had to pull together to navigate this bumpy road to independent living. Although we’ve secured a home for John to move into next month, I struggle frequently with worries about how he’ll cope with the transition. But I’m proud that he’s handling it all so well and is looking forward to setting-up his own home.

It was a great relief to learn that feelings of guilt, anger, pride, worry and protectiveness are all common for siblings of someone with additional needs.

Sometimes as siblings, we reminisce about our childhood and what we got up to, but even these memories can be tinged with guilt. For example, what if I’d accepted John more for who he was? Would he have greater self-esteem now? I’ve discovered, too, that guilt isn’t just a feeling relating to the past. Now the guilt comes in the form of thoughts such as, “I live too far away and am not assisting the family as I ought to be,” or, “Why are we encouraging John to live independently when I should perhaps be caring for him myself?”

It was a great relief to learn that feelings of guilt, anger, pride, worry and protectiveness are all common for siblings of someone with additional needs. It’s something I wish I’d known earlier in life. Groups such as Young Carers can assist siblings with managing these feelings and provide a safe social environment, while organisations such as Sibs offer support for siblings of all ages.

However independent John becomes, he will always be my little brother. I’m proud of him for who he is and so grateful to him for being unknowingly instrumental in bringing our family closer together.

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