Down Syndrome Cork: When communication is a family affair
CLOSE CONNECTION: Sophia and Harry Brassel with their mum Orla, who credits Down Syndrome Cork with giving the family an “avenue of communication” through its speech and language therapy programme. Pictures: Denis Minihane
Cork-based mum Orla Brassel was 15 weeks pregnant with son Harry when she discovered he had Down syndrome.
“The initial few weeks were just a fog – of worry, concern and fear of the unknown. I’d never had any contact with anyone with Down syndrome,” she says.
Orla and husband Leonard – also parents to five-year-old Sophia – took a few weeks to process the news. “I started looking for more information, to see what the future had in store for us.”
Finding the terminology in hospital leaflets “very outdated, the narrative quite negative”, Orla went online.
“I found a much more up-to-date scenario – real-life families living with Down syndrome every day. It was so positive. There was such love coming across. You saw that these babies with the extra chromosome brought something magical to their families.”
Prior to Harry’s birth – he’s now a mischievous four-year-old in mainstream Montessori – Orla contacted Down Syndrome Cork, a parent-led charity set up in 1974, which Orla credits with giving the family an “avenue of communication” with Harry. The young boy has sounds but not many words – mild to moderate hearing loss in both ears impacted speech development.
Ray O’Callaghan, manager at Down Syndrome Cork (Cork branch of Down Syndrome Ireland), says speech and language therapy (SLT) is the most crucial service the charity offers families. “It is crucial for helping our children gain more independence and move forward in their lives,” he says.
The organisation supports 380 families in Cork city and county and sees about 100 children a year for SLT.
While this therapy is also available to adults, the majority of SLT clients are in the early intervention categories (12 months to five years), with school-aged children aged six to 18 also well represented.
Senior speech and language therapist and SLT coordinator for Down Syndrome Cork, Midé Kearney says parents contact the service right from their child’s birth. “Children start attending regularly from 12 months.” Programmes include Little Explorers Early Intervention (12 months- 2½/3 years), Little Learners (2½/3-5 years) and the recently-launched School Readiness (done the year before children start primary school).
Kearney says the big focus is working with parents in small groups and coaching them to support their children. Parents become proficient in the Lámh manual sign system – they then teach their children the signs. “We give parents skills and strategies that encourage communication in their children.”
Parents are recommended to get physically down to their child’s level, so the child can look at their facial expression, as well as to lean in and wait expectantly, thereby cueing the child to take a turn. “We encourage parents to follow their child’s lead. For example, during bath time the parent might want to teach the child the sign for soap – but the child might just want to splash. Go with that – splash with the child. This is positive engagement. They splash, you splash, and you’re encouraging the early communication skills of eye-contact and turn-taking.”
The aim of Down Syndrome Cork is to have an SLT service that’s practical and functional for parents. “We’ve really moved away from this idea of homework – ‘I really must do my speech work’. Many of these families have a lot on – OT, physiotherapy. The focus is on communication around activities that the parents would be engaged on with the child anyway – bath time, mealtimes, the playground.”
Kearney says it is possible to help every child to communicate – but everyone’s communication might not look the same. “Some children might use objects to communicate. Some are verbal and may just need support with higher-level language or social interaction skills. Some might rely on Lámh, or on their phone so they can text or Google search something to show you what they’re talking about.”
Children are at all times supported to do more than just nod, smile and say ‘yes, we understand’. Kearney emphasises the child’s need for feedback. “We need to say ‘I’m not understanding what you’re saying. Can you show me the picture, or do you remember the sign for it?’ So that we’re really encouraging them to persevere and to get their message across.”
This is because speech and language are crucial. “Why do any of us communicate? It’s not just to get our needs met. It’s to build relationships, to reduce isolation, to share jokes and experiences and to learn.”
It’s very important, says Kearney, for young adults with Down syndrome to be a productive part of society. “Speech and language skills are really important in ensuring that for them.”
Orla and Leonard started signing with Harry when he was just six months old. “At the start, we’d sign Mama, Dada, and point to ourselves. If we were out for a walk, Harry would sign ‘cat’, ‘dog’. As he got older, we taught him signs around what motivates him. He loves food, especially eggs – he’ll sign ‘egg’ if he wants one in the morning. He now tries to say the word as well as sign it – and then sign it if he gets frustrated.”
A boy who enjoys playing pranks – “he loves hiding things when we’re trying to leave the house” – Harry’s also very sporty and likes football. “He does horse therapy and he loves being on the horse. He loves Peppa Pig and Paw Patrol.”
Orla says without Lámh, “given to us by the SLT services at Down Syndrome Cork”, she can’t imagine where Harry’s communication would be. “It has just been immeasurable, what it has done for us.”
- Down Syndrome Cork doesn’t receive any State funding for its speech and language therapy service. The service costs more than €150,000 a year to run. “Good local fundraising efforts” and corporate support help with costs.
- The charity is holding a ladies’ lunch in the Radisson Blue, Little Island on November 7. Tickets (€75) can be bought by phoning 021 4872 680 or email ray.ocallaghan@dsicork.org.
- October is Down Syndrome Awareness Month – visit downsyndromecork.ie; fieldofdreamscork.ie and downsyndrome.ie.
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