Akosua (not the real name) shared her experience of nurturing a child with cerebral palsy at a support group meeting. Her daughter, now 18 years old, is still totally dependent on her.
My daughter Ewura Abena still does not sit, so I can’t even talk of her achieving other milestones, everything has to be done for her like a fresh baby.
Recalling some of her experiences, she said: “where haven’t I gone and what haven’t I done?” We went for physiotherapy services for about 10 years, at some point we just gave up.
Not to talk of herbal and spiritual places that we have visited and the amount of money we have spent in hope to get my daughter Ewura Abena to be healed.
We have been through a lot, a lot that we cannot share openly but alas we just decided to give it all to God, she ended with a sigh!
In Ghana, many parents of children with cerebral palsy or some kind of neurological disability give up accessing the required healthcare half way through the journey.
Many parents describe access to the required healthcare as tiring, emotionally and economically draining and sometimes very depressing.
Another mother of a child with cerebral palsy said there were times she had taken her child to the hospital and by the time she was done, she literally had to beg for lorry fare (transportation) back home or walk home.
Yaa, said: “In one instance, I walked a very long distance with my child strapped at my back from Korle-Bu to the house in Teshie, when I got home, I just unstrapped my baby and wept bitterly, I asked God why me?
Yaa said she felt that her needs as a mother were not considered in trying to find a solution to her child’s condition.
“As a mother, you are giving instruction, go for physiotherapy, see a neurologist, do this, do that without any consideration to your emotions, your family life, your finances or anything for that matter. Sometimes, you go through this routine of seeing one therapist or professional after another for years and nothing really happens.
You do not see any improvement in your child, sometimes, you even feel the situation has worsened, you are forced to abandon anything career related and yet you are expected to provide food for the child.
Cerebral Palsy Africa, a Dutch charitable organization working in countries throughout Africa to improve the lives of children with cerebral palsy in Africa, says there is the need for rehabilitation workers to adopt a parent’s centred approach to managing neurodevelopmental disabilities
Mr Kees Van Den Broek, Former Director of Liliane Foundation, a Netherlands based organization, said the same approach that was used in the 80s to manage orthopaedic conditions such as club foot, polio etc. is the same approach being used to manage recent complex disabilities.
He said: “There is the need for a different approach to managing neurodevelopmental disabilities which focuses on the wellbeing of the child and the family and centres on the role of parents.
The organisation organised a training programme for rehabilitation of professional working with children with Neurodevelopmental disabilities for participants from five African countries in Ghana, calling on professionals to look for a new approach to managing such disabilities.
The training programme, the first of its kind, was hosted by the Salvation Army Ghana and Togo Territory in partnership with the University of Education, Winneba, with support from Cerebral Palsy Africa.
Mr Van Den Broek noted that many rehabilitations workers resort to regular painful and harmful passive exercises without any functional goal in mind and they argue that contractures should be prevented! “Too many children are literally being tortured and have no effect or whatsoever in helping a child to better function and have a better quality of life”.
The Special Mothers Project, a parents-based advocacy organization, sampled the views of parents on their WhatsApp online platform to know what they would like to improve about caring for their children with cerebral palsy.
Improvement in their quality of life as well as that of their children were the priorities for many of the parents. Some of the parents said they had come to terms that the child may not be able to function like a typical child, but require that the children are included in social activities such as going to school or affordable access to rehabilitation within their communities.
One of the Special Mothers said: “I wish that the services that our children required are decentralized such that even if my child is not able to attend a regular school, there can be a community rehabilitation Centre that accepts to take care of my child at an affordable price while I go to work to earn an income.
Many parents of children with cerebral palsy and other neurodevelopmental disabilities say they are looking for options that consider their overall well-being first.