speaks to a mum about Down Syndrome
WHEN Amanda Cahir-O’Donnell looks back on the first year of her only child’s life, she wishes she knew then what she knows now: that it would be ok, that everything would take longer but he would get there.
Conor, 15, has Down syndrome. “It was totally unexpected. My consultant just said matter-of-factly, quite coldly and clinically: ‘your baby has Trisomy 21’.” Newbridge-based Amanda and husband Keelan were in shock. Conor weighed just 4lbs. “He was such a little scrap and he had four things wrong in his heart.” Amanda says Keelan came to terms with things more quickly. “He decided he was going to be positive. I didn’t know anything about Down syndrome – Keelan’s mum was an area medical officer and he’d seen a lot more children with disabilities. I was hugely apprehensive about what lay ahead.”
Amanda was in crisis mode until after Conor had had two heart surgeries. He was 15 months and she felt she could move on. “Up to then it was about keeping Conor alive. We had to get him to a certain weight for surgery. Up to that point we didn’t know what he was going to be capable of.”
A “little fighter” from the start, Conor’s personality soon emerged. “He has a hugely engaging personality. He loves people. He remembers every name of anyone he meets, even if he only meets them once.”
Conor has ongoing health challenges, with stamina, eyesight, hearing and muscle tone. He loves Manchester United, Leinster and Ireland Rugby. He plays tag rugby with the Cill Dara Foxes on Saturday mornings. Conor went to mainstream primary school and Amanda says it was a difficult decision not to send him to mainstream post-primary.
“Other children are very nice to children with Down syndrome but they’re still not going to be their best friend, so the child with Down syndrome mightn’t get invited to birthday parties. You don’t get full inclusion.”
It’s a huge conundrum, says Amanda, if the child’s very sociable. “We really wanted to keep his confidence. It’s only now in second year we know we made the right decision. He’s incredibly happy at St Mark’s School, Newbridge, a school for children with mild general learning disabilities. He has loads of friends who ring him up and he meets them.”
Conor’s story features in recently-launched resource ‘More than Medical’, which challenges outdated ideas about Down syndrome.