Bar set far too low for Down syndrome kids

Parents can help their children with Down Syndrome reach their full potential, but more help from the Government is needed, writes Aedin Collins

Róisín, who has Down Syndrome, with her mother Aideen Collins in Caherlstrane, Co Galway. Pictures: Ray Ryan

DAWN is breaking in our home in north country Galway, and like nearly every morning for the past seven years, I awake to singing. It is coming not from the birds, but from our eldest daughter. I have never met anyone as musical as her. She manages to find the tune of every song and sings along even on the first listen. As parents, we wish to nurture that gift, yet we are unsure of how best to proceed.

For Róisín is not quite like other little girls. She has Down syndrome. It means she has a mild learning disability, which in turn means it takes her longer to learn things. Róisín is also what is deemed a ‘sensory seeker’, meaning she craves stimulus. This can take the form of climbing, wrestling and other physical activities. Sitting still for longer than a few minutes is a challenge for her. In addition, she is what parents in the Down syndrome community will recognise as a ‘bolter’. She takes off without a second’s notice, paying no heed to the danger around her. She is fast, and determined to do as she pleases. ‘Busy’ is the number one-word strangers have used to describe her. She enjoyed ballet lessons for years until she became too unmanageable. Her teacher was very accommodating but the bottom line was that she was unable to both teach the class and make sure Róisín didn’t disrupt the other students.

We modify our lives as best we can. But still, life with her is tiring and right now, there is not much help being offered. The excellent Early Intervention Programme ensured Róisín’s first few years of life were a whirlwind of appointments-cardiologist, optometrist, paediatrician, occupational, physiotherapy, psychology, speech and language. I brought her to baby yoga and music classes, desperate to do all I could for the child whose arrival at the hospital had been met with more condolences than congratulations.

Children with Down syndrome are often treated with the minimum of expectations. There is terrific fanfare when they reach their milestones, and rightly so, yet one cannot help but feel as a parent, that the bar has been set terribly low for our children who are more than capable with the right help. Róisín exited the Early Intervention Programme when she turned 6 years old and is now in what is called ‘the School Age’ programme. In the intervening 12 months, she has had just one speech and language therapy session and one physiotherapy session. My calls for more sessions go unanswered.

With her sister Eloise. Róisín has many strengths and her mother wants to see her reach her full potential. Pictures: Ray Ryan

Róisín attends her local mainstream primary school. The first few months for her here were stressful. We had some meetings with staff who were concerned with her climbing and bolting. Thankfully, that settled down and now Róisín is doing well, assisted by her wonderful special needs teacher and resource teacher. Homework is modified for her. While her classmates can all read and write, she has just mastered the pincer grip. Her spoken words are slowly coming on and she is finally starting to use full sentences. Her speech remains intelligible outside of family and friends, however, it would be a lot worse if it wasn’t for the privately funded speech and language sessions she enjoys thanks to Voices for Down Syndrome Galway.

Voices is part of the Galway branch of Down Syndrome Ireland run by parents who struggle to raise the necessary €135,000 needed annually to keep the project going. We persist as the results-our children being able to communicate with the world around them- are priceless.

The sight of billboards and vans portraying children like ours to further the views of one side of a certain upcoming referendum is particularly galling. Those thousands of euro would pay for many speech and language sessions for our children.

Róisín has many strengths and is a very strong visual learner.

If she has been to your house once before, and you were kind enough to supply her with her favourite food (potato waffles), she will head straight for your freezer on her next visit to you. I do not possess a strong sense of direction, yet it is Róisín who often guides me should I become lost. She is charming and warm and well known in our village. At school, everyone greets her looking for high fives and hugs, which she is always delighted to dispense.

As a child, I dreamed of being the most popular kid in school. For my daughter, it is a reality.

In Ireland we have seen a move towards a more inclusive society, with relaxed theatre performances and cinema screenings, and quiet shopping nights at major retailers. Indeed, we are years ahead of countries like Thailand and Singapore, where children with Down syndrome are still hidden away. A neighbour of mine who originally hails from Thailand, tells me she would love to settle back there when her children are older, but that she fears her son with Down syndrome would never be accepted, even by family.

While I am heartened by what we have done to make our country more inclusive for all, I feel there is still much to do. Less time wasting in filling out forms for appointments and services, less of a ‘one size fits all’ approach from HSE professionals, and more government funding to ensure we have the help we need. It is always Róisín and those like her who are expected to fit into society’s narrow conventions but I’d like to see society bend more to meet her needs. As a fellow Down syndrome parent once remarked to me, ‘We can always do better’.


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