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Clare mum shares story of support from Down Syndrome Ireland

AS CYCLISTS gear up to take part in the Tour De Munster this weekend, Clare woman Orla Browne a member of Down Syndrome Ireland (DSI), has voiced her appreciation for the charity and the support it has given her.
The charity cycle in its 21st year rolls through Clare on Friday, August 6 and is a key fundraiser for DSI.
Orla and her three-year-old son Harry have been members of the Clare branch of Down Syndrome Ireland since her boy was born. The charity has since become a lifeline for them, as a family that did not expect Harry’s diagnosis and were devastated initially.
Orla said that, at first, she did not want to be associated with organisations such as DSI because she was in total disbelief, but by the time Harry had reached a couple of weeks old, Orla was feeling overwhelmed and seeking all the advice she could get.
“We were in fear of what his life would be like and looking back there was no need to be.
“I got in contact with one of the parent support workers, who came out to us with her little boy, and that was the first time I thought, ‘This is going to be okay’.
It was a great relief, Orla realised, that all the families she met through the Clare branch, who were so content at that stage, once had all the queries she had, about speech and language, physio and other issues.
When the time came to attend one of the DSI Christmas parties, organised by the charity and funded by donations like those raised through the Tour De Munster, Orla said she was still unsure that she wanted to admit to herself that she was part of the community.
Orla explained: “It sounds awful, but in my mind, I was still thinking we should be going to “normal” Christmas parties. But when we went, we were ten foot tall, nobody looked at us as different.
“People don’t stare, but you would still often get that sympathetic smile as if to ask, “Is this your life?” I smile back as if to say, “It is, and it’s fantastic.””
When Harry was born a lot of people told Orla how lucky she was, and at the time the phrase was frustrating to a mother of a little boy with Down Syndrome.
But when Orla realised how few of the possible health implications associated with Down Syndrome Harry had, that was when the phrase became believable.
This means that the Browne family can focus more on the development of Harry’s forms of communication, attending speech and language therapy through DSI Clare, which has been of great benefit in developing Harry’s skills at this pivotal age.
Orla emphasised that while finding their own speech therapist was always an option, seeing a therapist that was subsidised by Down Syndrome Ireland and had experience with children with the condition made all the difference.
Occupational therapy is a sector of Down Syndrome Ireland that Orla would love to see funds go towards, because she had worries herself about how Harry would interact with other children as he grew up.
While many of the services the charity provides can be sought out publicly, she noted that it can take quite a while to be seen to.
She added: “Harry will be starting one-to-one swimming lessons when pools open up again as well. We know there will be obstacles for Harry, but we try to focus more on using the services present to build a scaffold to find new ways of doing things. It all just makes life that little bit easier for parents.
“Something we haven’t availed of yet is home tuition, which I didn’t think he’d need at first because I’m a teacher, but he works very well with other adults, and he walks all over us at home!”

By Conor Clohessy

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