The mother of a young man with severe learning disabilities has written about her experiences as a parent and carer. A feature piece on Jane Raca (and on the pressures faced by the parents of learning disabled children) appeared in the News Review section of the Sunday Telegraph, April 27th.
The article is well worth reading: many parents will have shared Jane’s experiences, and most will agree with the sentiments she expresses. The article begins:
In the summer of 1999, I was sitting on Whitby beach with my husband, Andrew, and our two-year-old toddler, Tom. There was a strong breeze that kept blowing sand into our ice creams, but the sky was bright blue, and the sun danced on the surface of the sea.
I didn’t know that the next day would bring a tsunami with it, one that would destroy the life I knew and leave me to rebuild a completely different one. I was only 24 weeks pregnant and my waters broke. Three days later, James was born weighing just 1lb 12oz, with extensive brain damage.
Until then, Andrew and I had lived in a state of comfortable ignorance, as affluent professionals. We had a nanny for Tom, and a nice house. James’s birth catapulted us into a different world, of life-and-death decisions, social workers, and the isolation caused by society’s lack of understanding about disability.
James is now 15, and has cerebral palsy, epilepsy, severe learning disabilities, and is severely autistic. He is doubly incontinent, can’t walk or talk, and can’t use his left hand.
Most people go silent when I recite this list. I like to add, then, that James is blond, blue-eyed and handsome, has a great sense of humour and will swipe the apple out of your lunch box before you can blink. It’s taken me 15 years, though, to be able to speak about him with equanimity, and I nearly didn’t make it at all beyond the first five years...
Jane Raca is the author of a book ‘Standing Up for James’.
See www.standingupforjames.co.uk for how to buy the book, and for details of Jane’s campaigning activities