You can learn so much from growing up with a sibling with special needs

Earlier this year I read about the controversial surrogacy case in Australia where the parents opted to reject one of the twins that had been born to a surrogate mother. The twin they rejected has Down’s Syndrome.

I struggle to find the words to describe then how I felt then and still feel about that couple’s reaction.

I felt sickened, disappointed. But most of all, I felt sad. I felt sad for the parents of the newborn baby and for the baby.

It genuinely saddens me that the twin who the parents chose to keep is being robbed of the chance to get to know its twin brother.

I feel quite compelled to write this because as the 20-year-old sister of a 19-year-old boy who has Down’s Syndrome and is classed as severe, I wanted to share that although it is hard, it’s also a joy.

I cannot understand why a couple who craved children so much that they went down the surrogacy route, could then simply reject the child, all because that innocent baby did not conform to their and society’s idea of perfection.

The parents of the baby will never know the joys and laughter that can be produced from spending time with their baby boy. I know from watching my parents deal with my own brother that raising children with special needs is incredibly demanding and often emotionally draining.

But having a child with Down’s Syndrome, a child that doesn’t fit the apparent norm, is wonderful.

My brother’s name is Alan. As I write this, I briefly glance over at him and he’s watching his favorite TV Show. Alan is unaware he is not like any other 19-year-old. He has the mindset of a young child. My parents have often said he is, in a way, better off. He doesn’t have a care in the world.

Alan is complex. He’s temperamental and incredibly challenging. But would I change him for someone without a disability? Absolutely not. Then he wouldn’t be my brother as I know and love him.

Yes, he definitely tests my parents’ patience, and mine sometimes. I know that often they feel drained and struggle to cope with the challenges that often come with having a child with special needs.

But I also know when it comes down to it, they love him with all their heart.

After reading about the surrogacy debate, I asked my parents how they felt when my brother was born. My mother didn’t lie and tell me she was completely unaffected. She admitted she struggled.

For a few days she struggled to bond with Alan.

She feared for him living in a world that would restrict him massively, a world where you would inevitably encounter some people who would say the wrong thing.

At first my dad refused to believe my brother had Down’s Syndrome.

But over time, my parents began to bond with Alan. Now they tell me, they would never ever swap him for a child who doesn’t have a disability, even when he’s at his absolute worst and throws things out of frustration.

Everyone always says that special needs children need someone to teach them. Personally I think they teach us a hell of a lot too. Recently I went on work placement to St Teresa’s Special School – my brother’s former school. I spent 10 weeks working with young children who have autism. Working with those kids taught me to see the world differently. They found beauty and enjoyment everywhere.

Working with those children and living with Alan has taught me to appreciate life, to try to find something positive in almost everything.

Sarah O’Hara

Killimor

Ballinasloe

Co Galway