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Opinion: If the HSE doesn't understand Down Syndrome, how can it care for those with it?

Children with special needs are what human beings have always aspired to be – selfless, non-judgemental and kind. But they are also very vulnerable.

Louise Hall

I DON’T THINK there was a single person in the country who felt anything less than sheer disgust when they heard the story of the mother who was asked to prove her child still had Down Syndrome. For anyone who has a child with this condition or knows someone with this condition, they categorically know that this is not and never will be curable.

One could be forgiven, if we were living back in the ’70s or ’80s, for being slightly naïve about what exactly Down Syndrome is. But education, integration, awareness and the fact that more children nowadays are being born with this condition means there are very few who would not be aware of what challenges come hand in hand with the syndrome.

When my sister was born back in the early ’80s, there was very little support or information about what it meant for the parents to have a child born with Down Syndrome. In fact, my mother was told more about what my sister would not be able to do, rather than what she would be able to do. When she brought her home from hospital, the challenges continued. I can remember, as a five-year-old child, looking at my baby sister in my mother’s arms and asking if she was ‘Chinese’?

‘Sure, she’ll grow out of that!’

One day, she brought my sister out in her pram for a stroll and met an older lady on the street. The lady peered down into the pram and gazed lovingly at the newborn baby who was sleeping soundly. As women do, my mother and the lady exchanged pleasantries and for some reason, my mother felt she had to explain to the lady that her daughter had a condition called Down Syndrome. The lady looked at her, slightly confused and sensing my mother’s upset she turned to her and in her deepest Dublin accent said: “Don’t worry love, sure she’ll grow out of that!”

This was pure innocence on the other lady’s part. To her, she was peering down into the pram of beautiful newborn baby. Down Syndrome was a word she had probably never heard of in her lifetime. Maybe to her, it was some sort of new bug or disease that affected newborns like jaundice or measles. In fact my mother laughed silently to herself at the comment, which wasn’t intended to be cruel or hurtful. The lady was simply trying to lift the spirits of a young mother who was worried for her child.

My sister was an independent, fun-loving girl

My sister didn’t ‘grow out of it’ but she did grow up to be an independent, fun-loving girl who lived her life to the full. But with her condition came many physical complications and visits to the doctors could, at times, be frequent. The education system for children with special needs grew over the years and my sister enjoyed the benefits of some amazing organisations which helped her grow into an independent adult. Sadly, she passed away very suddenly six years ago.

When I listen to the parents on the radio tell their story about the problems they face trying to secure medical cards for heir children who have life long conditions or illnesses, I find myself having to turn up the volume so I can be sure I am hearing things right. To me, it seems to be a case of ‘computer says no’ and it is a gross failing on our government’s part not to put this right today. Everyone who has a child with a serious illness or condition should be entitled to a medical card. Walk in their shoes. Live their lives for one day.

The human beings have always aspired to be

Medical cards should not be means tested because of one very simple reason: every family who has a child with Down Syndrome or any other physical or mental disability are already wealthy. They are wealthy beyond anyone’s imagination. The wealth does not lie in the money they work hard to earn every week. It does not lie in the decorated houses they have made their homes over the years. The wealth lies in the hearts and souls of their children who have brought untold riches into their lives. They are precious gems whose smiles lift the hearts of those they meet. They are polished diamonds whose personality makes us learn things about ourselves everyday.

Children with special needs are what we as human beings have always aspired to be; they are selfless, non-judgemental, inspiring, and kind. But they are also vulnerable and we have a duty – this government has a duty – to protect the most vulnerable in society.

Louise Hall is an author with The Columba Press. She writes fiction and non-fiction and is represented by Trace Literary Agency. Website www.louisehall.ie or you can follow her on Twitter @LouHallWriter

Read: Mother was asked by the HSE if her son ‘still had Down syndrome’

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Louise Hall

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