As the daughter of a special needs teacher I grew up with a huge amount of exposure to children with Down's. A lot of my school holidays were spent helping in the classroom (we lived in a separate educational district so my half term dates often differed to my mums) and I met some wonderful, fun, affectionate children who I still remember fondly.
This year on 21st March (21/3 - get it?) the internet will be flooded with pictures of cute babies and toddlers with Down's Syndrome. Everyone will click 'like' and 'share' to show how accepting they are of these cute children, but we need to show the rest; the tears, the challenges, the scars from heart surgery, the overweight adults, the struggle to get any kind of help once they pass the age of 18.
As a student I remember being very briefly involved in the care of a couple who had gone through extensive IVF treatments to conceive twin babies, only to discover one had Down Syndrome. I was horrendously judgemental about the fact that they chose to terminate the baby with Down's, at a ten percent risk of harming the other baby.
'How can they be so desperate to conceive that they go through round after round of IVF, then kill one child and risk the other because the baby isn't perfect,' my twenty year old self ranted to other trainees once I was well out of any possible earshot. Now I'm a bit older and wiser I feel incredibly guilty about being so judgemental, the thoughts and decisions they went through must have been heartbreaking and terrible.
I am very very lucky to have 4 wonderful (well, some of the time) children. For my first two pregnancies I declined antenatal testing for genetic diseases. 'I know about Down's,' I thought, 'A child with Down's will be as much of a blessing and just as loved.'
A few years later I gratefully accepted the offer of quadruple screening for pregnancies 3 and 4. I'm still not sure what I would have done if the results showed high risk, I don't think anyone can know until they are in that situation, but a few experiences have opened my eyes to see beyond the cuteness.
I'm still haunted by the worried faces of a family I once looked after. Now in their late seventies they had a surprise pregnancy, a blessing when the menopause seemed more likely, that resulted in their daughter, Tracey (names changed for confidentiality). At first despite the shock, and the mourning stage that most parents go through when their child is diagnosed, life seemed lovely. They were well supported by the health visiting team and as Tracey grew she got a place at a nearby special needs school where she was doted on by staff and students.
But Tracey kept on growing, until she was too old for school, and suddenly the support dropped away. The local college let her join a special class for a couple of hours a week, but she often didn't feel like going and there was no way her increasingly frail parents could force a 10 stone plus twenty year old, with the emotional control of a much younger child, to go against her will.
She sees a psychiatrist for adult learning disabilities, who does next to nothing, and funding for any supportive team members faded away years ago in the ever increasing NHS cuts.
Social services had very little to offer, unless she needed residential care there was nothing around.
Her parents were facing their own illnesses, surgery and chronic symptoms that made caring very hard. Perhaps they wondered about Tracey's older sister, a single mum who had worked and worked to buy a tiny house for her and her child. There would be no room there for Tracey, and the meagre sixty pounds or so carer's allowance would hardly fund a family of three if she gave up work to care for her sister. Having scraped and saved to own her own home meant she would be ineligible for most benefits.
Could I have done this to my family? It is increasingly likely that my children will not have the luxury of having a stay at home partner as inflation pushes the cost of living ever higher. Social and supportive care is deteriorating as council run initiatives get farmed out to private providers who only care about profit. I remain thankful that I have never had to make that decision.
So here's what I would like to see this awareness day. Don't just show the cuteness, show the reality. Talk about the good times and the bad. Yes, we need to increase awareness of all learning disabilities, and the support for people with LD after the age of 18 is abysmal. Send funding to help increase independent living, to provide much needed breaks for struggling families. Apply pressure to make benefits more accessible. And don't forget the other learning disabilities that aren't so photogenic.
http://www.downs-syndrome.org.uk/
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