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My son's diagnosis changed the course of our life

27 January 2015
Jane Raca

My life was altered profoundly and forever, when my son James was born very prematurely, with a bleed on his brain.

That was 15 years ago, but I still look back at that defining moment. It was as if my husband Andrew and I had been riding happily on a train, then someone had changed the points and we veered off in a different direction, into the unknown.

The journey which followed was terrifying. I was stupefied by shock. I couldn’t see where I was going and I had no idea what James would be like. What did the brain damage mean? I was gradually to find out, as it became clear that he couldn’t walk or speak, and he had epilepsy, learning disabilities and autism.

It took a while to understand that there would be many services involved in his life, and that it would be a full time job, co-ordinating them and chasing for what he needed. I had to give up work to cope with it all. As James became bigger, more challenging and had seizures, we couldn’t use ordinary babysitters. We registered for specialist child-minding but no-one was ever found.

We stopped trying to go out at all after our 10th wedding anniversary. We were celebrating in a French restaurant and had just ordered a sumptuous meal, only to get a panicky call from the sitter to say that James was turning blue. I still remember the menu we never ate.

There were also the services we didn’t receive. James had no occupational therapist for years, due to shortages. And we had no idea that he was entitled to support from social care, from birth. It was only when we broke down in front of his consultant, from years of sleep deprivation and stress that we found out. She made a referral for respite care, but this wasn’t enough. James needed support that we couldn’t give, and in the end we had to take the council to tribunal to get him into a specialist boarding school.

Some people have questioned whether we really love James, or whether we just wanted him out of the way. The reality is that we love him as much as we love his brother, Tom and little sister, Elizabeth. All of them are the earth, moon and stars to us. We think that James, like his siblings, has the right to fulfil his potential and to grow up with confidence and self-respect. After years of residential schooling he can use an iPad, tell the time, and drive his electric wheelchair through a doorway better than Jenson Button. We and his carers constantly tell him how clever and brave he is. He is a confident teenager now, and anyone who underestimates him had better beware!

We plan that James will go to college, but beyond then the future is unknown. So the journey on the train that branched off 15 years ago isn’t over yet. But at least my fear and confusion have lessened with time. For those who have yet to make the same journey, I hope that the route will be better. The Children and Families Act which was passed last year is intended to improve things. I trust it does. I hope that the stations on the branch line will now have the best signs and notices, the brightest lights and plenty of kind, professional staff. The future of our most vulnerable children depends on it. 

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