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 Virginia Bovell with Danny, aged four

 Mother’s love: Virginia with Danny, aged four

Who’ll be there to care for our autistic son when we’re gone? Writer Nick Hornby’s ex-wife tells of her fears for the future

By Virginia Bovell
Created 1:20 AM on 25th April 2010

In his book 31 Songs my ex-husband, the writer Nick Hornby, spoke of the ’40 terrifying years’. It was his guess at the amount of time our son Danny will be alive, once Nick and I are gone. We both fear for his future and wonder who will support him and fight for the things he needs when he cannot express for himself what they are.

Danny was diagnosed with autism when he was three years old. He is now 16 and, alongside his severe learning difficulties, this year he has been in and out of hospital with chronic gastrointestinal problems.

He is often in intense pain and is on a fair bit of medication. We keep daily charts, we observe changes in minute detail, we adjust dosages – it is like a meticulously calibrated battle plan.

When he is well, it is as if he doesn’t have a care in the world. He is cheerfully non-verbal – he has only a few words, such as ‘momma’, and ‘diddle’ for daddy. He is also happily and unresentfully dependent on others for most of his waking life.

On a good day I am optimistic for Danny, but if I’m honest, worry often keeps me awake at night. Because he doesn’t speak, and understanding him requires close observation, I wonder who will love him enough to give him the levels of meticulous attention that a parent would.

But besides being loved by his father and me, he is blessed with a strong network of friends and support workers who I know will always look out for him.

We receive financial help from Islington Council, which means I can employ a support worker for Danny when he isn’t at school.

This money covers only eight hours a week, but I am fortunate to be able to pay for more myself. I know from my work with the National Autistic Society and with Tree House, the autism education charity I helped set up, that some families battle to get any funding at all.

There are residential care homes but many adults with autism still live with their families, even in their 50s. Parents who have given up work to support their child are faced with the awful prospect that there will be no one to fill their role when they die.

I hope one day Danny will achieve enough independence to live on his own. But he will, as far as I can tell, need some kind of care for the rest of his days.

He can dress himself, but without guidance he would more often than not choose to walk down the road in pyjamas, back-to-front and inside-out. He has a right to do this, of course, but on the other hand he has a right to be protected from ridicule, not to mention traffic hazards to which he is still oblivious.

Just like any parents, we are hoping he will have a safe, fulfilled, stimulating and enjoyable adulthood. What this means in practice for Danny is rather different, though.

Trampolining is likely to be a permanent source of joy, and I hope he will acquire enough independence to feel pride in making his own toast, cleaning his teeth unsupervisedor accessing YouTube – which he loves – on his own.

Read More …  http://www.dailymail.co.uk/health/article-1268648/Writer-Nick-Hornbys-ex-wife-tells-fears-autistic-sons-future.html



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