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Bar set far too low for Down syndrome kids

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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