To the one parenting a child with Cerebral Palsy in Ghana

I have come across many mothers parenting children with Cerebral Palsy since I started “the Special Mothers Project” in Ghana. The project reaches out to mothers of children with Cerebral Palsy, while advocating and creating awareness on the issues.

One thing I realize is that every mother or parent is doing the best for their children with Cerebral Palsy (CP) in their own corner. I have also come to realize the initial joy when two or more parents with such children discover themselves.

They have common things to talk about or share, sharing experiences such as how they have been able totoilet train their children or what challenges they face with regards to education and health usually takes the centre stage.

The Special Mothers project, which started as a parents support group for mothers with children who have cerebral palsy is now involved in a lot of advocacy and education, realizing that there is no common platform that voices the concerns of parents with CP children.

There is no written or even spoken policy that supports the children.While some schools (I mean the crèche or Day care centres) will readily accept a child with CP others may think twice and yet others will charge extra should they accept a child with CP.

There are some parents who just avoid any of such conditions and keep their children home and isolated from public life, yet there are others who will go all out and do whatever they can to help their CP children attain the highest and the best life could offer them.

Unfortunately there are also people who exploit parents with such children. I was personally moved when I spoke to a mother who said she moved from “pastor to pastor” seeking help (healing) for her child.

She said at some point a “pastor told me to pay GH?1000.00 for him to pray for my child to walk, when I said I didn’t have that kind of money, he sacked me from his premises and told me to come when I get the money”

The mother said: “I really wept and felt it was the end since I did not have that kind of money to pay a “pastor” but at the appropriate time God lifted my child up and she walked.”

This Mum also shared this as a testimony in church. One thing I realize is that there are people who take advantage of parents with a CP child and victimize them (treat them us victims) in fact there are also people who have children with CP and use that as an opportunity to extort money.

Once on a TV breakfast show, a man and a lady who have children with CP came up and talked about CP, finally the man was asked what could be done for them and he said, “People should help us.”

He said “No amount is too small, help us with diapers, and whatever you can give, leaving an account number,” I felt really disappointed. So I searched for the man’s number and called him.

I engaged him a bit and said: “man don’t you think that you could have asked for good and favourable policies, encouraging environment and the like, instead of virtually begging for peanuts.

Yes, having a child with cerebral Palsy is difficult but using that as a trump card to pity party is worse. Another thing that makes parents give up so easily on these children is the health sector.

Even though our health sector is doing its best, sometimes their response to children with CP leaves much to be desired.

Another mother shared an experience of her child twitching and convulsing frequently, so during one of such episodes, she rushed the child to the hospital. According to her the doctor looks at her and says: "when we tell you that this disease have no cure you don't want to understand, you go round and round and when it is worse you come back."

The mother says "My heart sunk, when the doctor said this to me, I only needed to understand what was happening and what could be done to help the situation."

Why won't mothers and parents resort to pastors and spiritualists and pastors if this is the response they get from the health sector?

Cerebral Palsy is a neurological condition (brain injury) that affects movement of children.

I wish that all parents with CP will come together with one voice to ask for better and efficient health services, education and a great environment that foster good development, that all parents with CP will come together to work so that children with this condition in the next generation will have a much easier life

There is hope for children with Cerebral Palsy and the parents of a child with CP have a very important role to play.