Last August I flew out to Ghana to meet and train therapists working with children with both cognitive and physical difficulties.
I took with me lots of orthopaedic shoes and splints to hand out, some kindly given by parents of children at the London Centre for Children with Cerebral Palsy and a job lot from a London orthopaedic clinic, sourced by one of our parents.
During my month-long trip I was asked to give a talk on cerebral palsy to parents and staff at the Orthopaedic Training Centre (OTC) in Nsawam, which is just north of the capital Accra.
A label with no explanation
Each sentence I said had to be translated into Twi which meant it was pretty long. But it was wonderful to see a smiling nodding crowd as, for the first time, they saw their child and their lives described in the words of a professional.
They were hearing what cerebral palsy was – this label they had been given for their child with no explanation. They were finding out what this meant for their child, what was going on, why and, most importantly, what they could do to help.
There is a culture of not asking questions of medical professionals here a nurse told me afterwards. She works in a clinic nearby and spends so much time trying to work out what has gone on before. Mothers bring their babies to the clinic having seen a doctor elsewhere, taken medicine from them and given it to their child but they have no idea why, what the medicine was or what it was supposed to do. The information was not offered and they were not supposed to ask.
So I made myself available for questions during and after the talk. It started at 10am and I didn’t finish taking questions until 3 pm – even then I could have stayed later but the Centre was closing!
Sharing my experience of working with children with cerebral palsy in the UK, I think many found it reassuring that frustration is felt everywhere – even in a country with some of the best facilities in the world.
And it is, it really is because we, as professionals and families alike, love these children and fight tooth and nail for them.
But having cerebral palsy is hard, really hard. And I know it’s hard for the families I work with here and in the United Kingdom.
Life as a battle
Whilst living day to day life with all the usual stresses and joys, they also have this battle on their hands every day. A battle to make the world around them see their child, to keep their child healthy, a battle to have the opportunities we can all take for granted and a battle with all the emotions that brings.
In addition, something that few people like to talk about is grief and guilt – two incredibly natural feelings that are often hidden.
Cerebral palsy is caused by a disturbance or damage to a developing brain. So a lot of parents can end up harbouring feelings of grief, grief for what has happened to their child and for the kind of life they wanted for their child. And then guilt for feeling this way, guilt feeling that something could have stopped this. It’s a completely natural feeling, but one that is not justified.
Our natural instinct is to protect children and so when something goes wrong, even when it is completely out of our hands, it is all too easy to look inwards with anger.
I’m not a parent and I therefore cannot imagine what it feels like to have a child or have a child who has complex needs.
I do, however, love the children I work with dearly and, having spoken to many of their parents about this complex subject, I’ve seen that these feelings are very common.
A parent of a disabled child I used to babysit once told me:
“When you plan to have children you envisage your future life and theirs, you imagine typically that they will be with you for around 18 years, they will branch off and live their own independent life, maybe get married and have children of their own and then they will be there for you in your later years.
Our reality is having our child with us at home for the rest of our days, reliant on us for much of their day. I would never have it any other way but, at the same time, this is not how anyone thinks their life is going to go, how their child’s life is going to go. They will never live an independent life and I spend my life terrified of what life holds for them after I’m gone.
Cerebral palsy has taken over all our lives. We don’t live your typical family life and I feel horrendous that I’ve just said that.”
I’d like to stress that I am talking here specifically about children with complex needs as this is my speciality and that is the audience the talk was for. Needs that often include limited mobility, self-care skills, swallowing or communication difficulties. There are many, many individuals with cerebral palsy who live completely independent lives.
In Ghana the socially accepted ideology tells parents that that cerebral palsy or any additional needs are spiritual diseases; they are punishment for wrong-doing, a curse or even spiritual possession.
As wrong as this is, when everyone in your world is telling you this, when you see no one else with disability, when there is zero media representation and some random person (me!) has come over to your country to disagree with everything you’ve ever known, who are you going to believe?
Incredible and moving
The power of having all these parents in one room was so incredible and so moving.
Many of them were on their own – their families including partners had left them after finding out their child, their grandchild or their friend’s child has cerebral palsy. Having someone acknowledge that and having other families with the same concerns around them, which for many had never happened before, was a huge experience.
It was cathartic for everyone to just hear they weren’t alone and I found it humbling to be a part of that. As part of my job I do a lot of staff training. I lecture for Canterbury Christ Church and Greenwich Universities and I advocate wherever possible. But nothing has ever felt as important at that talk.
Stop Press: Good news!
After I got home to London, I received an email letting me know that there’s been a big movement after the talk and, as a result, the Centre is collaborating with the Special Mothers Project, an organisation set up by mothers of children with cerebral palsy, to hold a bigger awareness workshop soon in Accra.
They need a Speech and Language Therapist to help and so asked for my recommendation in finding one and my advice from the United Kingdom!
This is exactly the kind of impact we were aiming for so I am so so pleased for them.
Paediatric Speech and Language Therapist
London Centre for Children with Cerebral Palsy