Dublin mum reveals how Down Syndrome therapy centre has changed son’s life

It’s something for his proud mum Claire to beam broadly about too, as just months ago, she recalls how her youngest son was “a very sick little boy” as he spent a year in Children’s Health Ireland at Crumlin.

“His little personality is shining through,” she says. “He’s smiling more, he’s engaging, he’s starting to hold toys, he’s more vocal. He’s happy. We had none of these while in Crumlin — he was just a floppy, very sick little boy for such a long period of time.”

The fun sensory room visited weekly by the adorable two-year-old is part of the recently opened Down Syndrome Centre in Swords, Willowbrook House, which provides services and support to children aged from three months right up to 18 years.

On World Down Syndrome Day today, mum-of-two Claire explained how it couldn’t have come at a better time for her family of four, including husband David and Sam’s six-year-old brother, Rory.

“Sam had a tough start,” she recalls of his diagnosis with Down syndrome in August 2020. “He was diagnosed with Trisomy 21 (another name for Down syndrome), but he had some complications.

“We ended up in Crumlin (with him) for 53 weeks, so we had a tough year.

“It was a postnatal diagnosis, so that was difficult to process for a bit as well. It’s the last thing you expect to hear when your baby is born.

“It was an absolute rollercoaster for us, to be honest. Thankfully, he’s made a great recovery.”

Much of that progress, she explains, is down to his attendance at the centre, where he also receives physio, speech and language therapy and occupational therapy.

“Before we were discharged from the hospital, I got a phone call from Triona (Cussen, manager of the centre) — what an incredible lady — to say, ‘We are opening a new Down syndrome centre in Swords’.

“At times, I couldn’t see the wood for the trees in Crumlin ... I remember scratching my head, saying, ‘Where are we going to start with therapies?’ And that was something that absolutely lifted me.

“Sam was actually the first kid to visit the centre,” continues the sales executive. “Developmentally, we’ve seen a huge difference in the last couple of months.

“We go to a playgroup every Tuesday called Team 21 Tots. There’s also a fantastic sensory room there — he absolutely loves it. It just relaxes and engages him.

“He’s a real sensory kid — music, colours, big bright lights. He has a mini keyboard and he loves just banging off the keys. I’m quite musical, so I’m hoping he has my musical gene!

“He’s sitting and standing much better now, when we left Crumlin he wasn’t even close to standing,” Claire says. “He wasn’t reaching milestones, he was very sick.

“From a developmental point of view, having the Down Syndrome Centre 15 minutes from our home is a blessing. I couldn’t have this conversation with you this time last year — it’s amazing.”

But it’s not just happy-go-lucky Sam who has benefited hugely from having the facility on their doorstep. Claire believes it’s a lifeline for worried parents too.

“It reminds me of home from home,” she says. “The first day we walked in and met Triona and her team, she said, ‘Claire, this is an open house policy — come in here if you just want to chat to someone or just have a cup of tea’. And that’s what I find.

“I stay around after his little play class on a Tuesday, we sit around the room, we shoot the breeze — like, last week we were talking about what’s involved in registering for preschool. That’s invaluable.

“We’re all in the same boat, we all have one thing in common — albeit the kids have different personalities — and I suppose sharing those experiences is something that has helped me hugely because I was in a tough place.

“I was in a dark place at times, I won’t lie about it. And I had a six-year-old as well, so we were trying to juggle life with him.

“I was staying Monday to Friday in Crumlin and my husband covered the weekends. It was difficult on family life, there’s no doubt about it.”

Conscious that other mums and dads have a far more gruelling commute to access services, Claire backs calls for better nationwide access to services for children with additional needs, especially during those crucial early months and years.

At a community level, meanwhile, she encourages people to learn even just a few words of Lámh — a manual sign system used by children and adults with intellectual disability and communication needs — in order to include those like Sam in everyday conversation.

“Communication is huge for people with Down Syndrome. We’re picking up little Lámh words every week, I’m practising them with Sam the whole time.

“We live out in the country and I go walking a lot with Sam. I would stop at a gate at a field and point out the cows and make the sounds and sign Lámh.

“I never really knew a baby who had Down Syndrome before we were diagnosed with it, but now if I saw a kid with Down Syndrome, straight away I’d use the Lámh sign to say hello.

“I would love to see someone coming up to my little boy and, rather than just chatting away, if they could do the Lámh signs and communicate that way — I think that is something that the parents really would appreciate.

“Since Sam has come along, a couple of people have come up to me and said, ‘I’d love to learn that’,” tells Claire. “I think (there’s) a lot more inclusion and awareness, and rightly so — we need to have our kids included in things.”