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Sue Macdonald: A parent’s view of cerebral palsy—20 years on

25 Mar, 14 | by BMJ

sue_macdonaldThe other day I came across a personal view that I wrote 20 years ago just after learning that my baby son, Dominic, had been diagnosed with cerebral palsy. The article made me cringe a bit, in the way that something written by your younger self invariably does. But the emotions I was trying to express came back to me all too vividly. I remember the questions about the future racing through my mind. I remember feeling exhausted by the endless hospital visits, crushed by my sadness, and daunted by the responsibilities that lay ahead. And yet, through all the grief and trepidation, I remember daring to hope that the future wouldn’t be so bad. However, the one thing I never imagined was that 20 years later I would be writing another personal view with just the same feelings of trepidation and uncertainty.

So, how has it been so far? The reality, of course, is that Dominic’s childhood hasn’t been a series of soft-focused tragic or inspirational moments. Our lives, like almost everyone else’s, have been hard work; sometimes stressful, sometimes tedious, but on balance the good times have outweighed the bad. The lowest points for us as parents were receiving the additional diagnoses of severe learning difficulties and autism. Our most important lesson was to learn to take one day at a time. If anyone reading this has a young child with a disability, there is so much I long to tell you. You should not under-estimate the difficulties that lie ahead, not only for your child but also in terms of your own family relationships, working life and leisure time. But equally you should know that your child can have a good, fulfilling life and that you will receive endless help, support and kindness from people that you would never otherwise have met. I want you to know that, like a bereaved person, your feeling of desolation will ease, that one day
you will take delight in your child’s life and that you will come to see beyond the disability to the person he or she really is.

I’m trying to give you an honest picture. But if it’s all turned out so well, why is it that, 20 years on, my concerns have returned as strongly as ever? After following the remorseless routine of everyday life with a disabled child for all these years, I’m rapidly learning that the childhood was the easy bit. It’s been a shock to discover that becoming an adult changes everything in a world that tries to classify everyone under neat headings. It means the melting away of automatic access to services that we have relied on for years: the paediatricians, physiotherapists, speech therapists, social workers and respite care have all gone and we have to apply again from scratch. It means tough decisions about the future that lead to time-consuming battles for funding for further education, adult activities or residential care. It means the isolation of long days at home now that children’s activities are no longer available. But perhaps the hardest thing to bear is the difference in other people’s attitude as my son has changed from an adorable, blonde child to a clumsy, uncommunicative adult who sometimes makes facial expressions or movements that belie
his beautiful, gentle nature. I’ve seen children stare, mimic or shy away from him; adults are usually more tactful. When Dominic was a child I was often asked to speak to student physiotherapists, midwives or nurses about our family’s experience. Nobody in adult services has asked me to speak to them. How many students would choose a module about difficult young adults?

As we adjust to our new circumstances, in which Dominic must jostle with the general adult population for limited medical and care resources, I am beginning to realise just how privileged we were in the past. If my well-informed elderly mother had to reach crisis point before receiving the support she needed for her illnesses, how much harder will it be for a person with learning difficulties to access appropriate care? Put starkly, what will happen to Dominic when we die? Who will speak for him? Who will care? No wonder I look to the future with anxiety.

And yet, just as I did 20 years ago, I dare to hope that the future could still be bright. Attitudes to disability are improving all the time. Medical initiatives such as GPs’ learning disability health checks and the Six Lives report offer a real attempt at providing better care for people with learning difficulties. I have just one message for the medical profession, the budget-holders, the policy-makers and the service-providers. It’s right for you to invest resources in helping disabled children. But it makes no sense to leave the job unfinished. Until that clumsy, unappealing adult has parity of provision with the adorable child in the wheelchair, your job is unfinished. Until the students study modules about adults with learning difficulties, your job is unfinished. Until we parents can be certain that our children won’t fall by the wayside when we are gone, your job is unfinished.

Competing interests: None declared.

Sue Macdonald is a freelance writer.

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