The 10 Year Challenge has been doing the rounds of social media recently. Mostly it’s a bit of fun to show how much you have or haven’t changed over that time. For me this is more than a bit of fun, because in those ten years I have become a completely different person.
Our oldest son Ben is now eleven and has Down’s Syndrome. He was given a post-natal diagnosis and for the first few months of his life, I was shocked as I had no idea what it meant for us as a family. Ten years ago, my first thought each day would be ‘my baby has Down’s Syndrome’.
Part of my distress over Ben’s diagnosis was due to never having met anyone with Down’s Syndrome and the unknown was scary. With the growth of social media, there’s much more information out there now for parents facing a diagnosis. The great thing is, this reflects actual lived experiences rather than an outdated medical model of what living with Down’s Syndrome means.
We were handed some rather outdated leaflets at the hospital and the staff did do their best to support us, but we left hospital feeling bewildered and uncertain about our new life ahead of us.
I contacted our local Down’s Syndrome support group when Ben was a few weeks old and we joined a playgroup in our village for pre-school children with disabilities. Whilst this wasn’t a club I had chosen to join, it very soon became apparent to me that we had joined the most amazing community of families. We laugh and cry together, we support each other through thick and thin. Most importantly we celebrate our wonderful children at every turn.
More recently my ‘extended family’ has been enriched in a truly wonderful way through social media. The online Down’s Syndrome community is doing something quite extra-ordinary just now, as there are growing numbers of people who are unwilling to allow damaging and outdated perceptions of Down’s Syndrome to persist.
This is hugely significant because the lack of awareness around Down’s Syndrome can affect all sorts of areas, from outdated information being delivered at the point of diagnosis, to access to education, employment and healthcare.
The most stressful aspects of parenting a disabled child have surprised me. It certainly hasn’t been dealing with Ben’s day to day care needs, although I can’t pretend coping with his poor sleep for over a decade has been easy!
I find the endless paperwork very demoralising, especially when much of it involves repeating the same information again and again. I have a filing cabinet just for Ben’s paperwork. I find it difficult to accept there are times when people in offices who don’t know Ben, have to make decisions about him which will affect not just him but the whole family.
I dislike it when organisations which are supposed to be there to help us fail to communicate, resulting in entirely avoidable uncertainty and stress. These are the challenges.
Ben is not the challenge – far from it. It is the time spent on forms and appointments, and the energy it takes to keep well informed about how to access the best support.
I mentioned that I am a different person now. I am, because becoming an advocate for my child has taught me so much. Quite simply, I am a better person, kinder and more socially aware.
I have discovered just how tenacious I can be when I have to fight Ben’s corner. My priorities have altered profoundly. When we were given Ben’s diagnosis, it was certainly presented as bad news.
I often reflect on how my life has changed, but it isn’t with regret for the child I thought we were having. Ben is a remarkable boy, living life in the moment, an inquisitive learner, enthusiastic, funny and very caring. It didn’t say that in the leaflets!
I have spent all my working life in education, mostly teaching music but also working with pupils who have special educational needs and disabilities. I am passionate about inclusion and promoting understanding of Down’s Syndrome.
My son Ben has Down’s Syndrome.
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