Bar set far too low for Down syndrome kids
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.
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