What do you say to the parents of a new Downs baby? Congrats!
Carissa Casey meets the man who is there for fathers after they've been told their child has Down Syndrome
Published 09/08/2011 | 05:00
Laden with flowers and a teddy bear, like many new dads, Aidan Lynam returned to the hospital on Patrick's Day 2005. His wife, Nicky, had given birth in the early hours to a beautiful baby girl, Robyn, sister to then three-year-old Jake.
Aidan found Nicky in floods of tears. "I glanced quickly into the cot and saw Robyn looking up at me. I thought, well she's still alive. It can't be that bad," says Aidan.
Nicky had just been told that Robyn had Down syndrome. "It came out of the blue," says Aidan. "Nicky doesn't drink or smoke. She eats really healthy. We had no idea this was going to happen.
"And yeah, it was pretty devastating. You start thinking about 21sts and weddings and all sorts of things that aren't that important."
Robyn had jaundice and was moved to the intensive care unit. Aidan spent time with her and came to an important realisation.
"It struck me that the whole 'woe is me' thing wasn't going to get me anywhere. I came back down to earth very quickly and decided we were going to be okay," he says.
Robyn is now six and has just completed her first year at the same school attended by her older brother. She has a younger brother too, three-year-old Harry.
"She's hitting her own milestones," says Aidan. "She can write her own name and she reads at her own rate."
Aidan is the only man on Down Syndrome Ireland's Parentline, a support service for parents of children with Down syndrome. "You realise pretty quickly that every situation is different. Everyone reacts in a different way. Some people do go to a very black place and you don't judge. It's a lonely experience."
After Robyn was born, Aidan found that many people simply didn't know what to say. "They were afraid of upsetting us by saying the wrong thing so they said nothing. It was hard because we did really need people.
"A lot of people ask me now, what do you say to parents who have had a baby with Down syndrome? The answer is 'congratulations'. You say everything you would normally say."
About 7,000 people in Ireland have Down syndrome. It's a life-long condition and can affect physical development and learning ability. There is also an increased risk of certain health conditions.
Robyn, for example, has to have her thyroid checked on a regular basis. "Strangely enough there's something reassuring about all these tests. I know she doesn't have a heart condition, that her lungs are healthy. She's scanned from head to toe on a regular basis and I can't say that about the other kids."
Being active in Down Syndrome Ireland (DSI) has made all the difference to Aidan and his family. DSI has over 3,000 member families, 25 branches nationwide, and is funded by voluntary donations.
Aside from support and counselling services, it offers therapy clinics and, perhaps most importantly, opportunities for parents to share advice and practical information.
"For example, eating raw vegetables helps with muscle tone of the tongue and that in turn can help with language development," says Aidan. "That's the sort of tip you can pick up. It's important to stay up-to-date because things are changing so quickly."
"We provide support to people with Down syndrome from cradle to grave," says Aidan. "But I suppose an important part of our work is being there for new parents. It can be a very traumatic experience."
As well as talking to new dads of babies with Down Syndrome, Aidan is often contacted by mums and grandparents. "Mums sometimes want to talk to me about their husbands. I suppose it's true to say a lot of dads aren't comfortable talking about things. We try to be the big strong ones.
"It's not uncommon for dads to hold it together at first and then, a bit later, it suddenly hits them and they've nowhere to turn. They don't feel they can burden their wives and so they bottle it all up. That can have a devastating effect on family life, on relationships."
DSI's Parentline service is entirely confidential. "That's really important. People need to be able to say whatever is in their heads.
"It's a matter of getting this stuff out there. I've dealt with people who were really struggling and now I see them and they're in such a different place. Being able to talk about things makes all the difference."
As for family life with the Lynams, with three young children it's pretty busy. "It's like a three-man wrestling team sometimes," says Aidan.
"When it comes to Robyn's future, I have the same hopes for her as I do for any of my children. I want her to be happy and healthy. I remember once thinking, well she'll never be a rocket scientist. But now I think, well who knows?
'In the past, people with Down syndrome were institutionalised. No child is going to flourish in an institution. Things have moved on a lot and we don't think about setting limits now for any child, whether or not they have Down syndrome."
While Robyn had a full-time special needs assistant (SNA) last year, cut-backs mean that this September she'll only have an SNA half the time.
"Yeah it's a pain and it shouldn't be happening but that's the situation we're in," says Aidan. "There's really no point in whingeing about it."
An important fund-raiser for DSI this year is the 11th Annual Tour de Munster, an annual four-day charity cycle which takes place this Thursday until Sunday, August 14. Some 150 amateur cyclists will cycle over 600km around the six counties of Munster.
For more information about Down Syndrome Ireland check out www.downsyndrome.ie
For more information about Tour de Munster check out www.tourdemunster.ie