‘My Child should die first’– Special Mum

The voice on the other side of the phone sounded frantic, she said “Madam I saw your website...I have a child with cerebral palsy so I am calling for help.”

I smiled to myself and went ahead to tell her what the Special Mothers Project does, so I explained that the project served as an information hub to parents of children with cerebral palsy especially mothers.

The project also links parents to the limited support services available in Ghana, while advocating more of such services and ultimately favourable policy for children with cerebral palsy and families raising such children.

Then she said please I was wondering if you could help me find a school for my boy, we have been home for all this while, I am getting frustrated and I need to put him in school.

So I quickly pointed out the centres that the Special Mothers Project is facilitating, With God Cerebral Palsy Centre, Impact Care and Rehab Foundation, Epi Centre and also mentioned Sharecare Day Care centre and Multkids Academy.

I told her depending on where she stays she could make her enquires and seek admission for her son.

She asked again, Are you sure, they will admit my son, he cannot do anything by himself, will they take him, I said to her that those centres admit children with cerebral palsy, she should give them a try and wished her good luck.

This is a daily routine for the Special Mothers Project, parents that call to see if they can get help for their children with cerebral palsy, students doing their research on care givers join our Whatsapp group to find information and parents calling to share their concerns.

One thing stand outs especially from parents-they need some kind of respite, they need their children to be part of society, they need inclusion, they need society to understand them, they need their children with cerebral palsy to be in school.

In Ghana, many professionals have for far too long focused on hospital based care and therapy, many parents wish for an alternative, many are tired of taking their children to the hospital once or twice a week and then that becomes their life cycle, hospital and home with nothing else to do but to beg for income

The Special Mothers Project is advocating an enhanced life for families raising children with cerebral palsy, a life where the mother also has a life, her own life to live.

Auntie Adwoa (not the real name) said at one of the parents support group meeting that when the mother is sane, the child with cerebral palsy will be well.

Usually many mothers are not emotionally balanced because of all the expectations that society wants from them, their child must be “perfect” to enable them belong so many mothers get exhausted just by going from place to place to seek help.

It is about time that we encouraged people to take up professions that serve the needs of such families, respite care professionals, Community based rehabilitation professionals that will seek to provide home based services to enhance the lives of families raising children with cerebral palsy

As a country, it is time we begin conversations around respite care, assisted living, interestingly I have heard many mothers says that “as for me I pray to God that if I should die, then my child should die first I do not know how my child will survive without me...”

Yes can you imagine? This is a mother’s prayer and it is prayer offered for a child out of love. Many are scared of the future for their children with disabilities; they ask the question what next? With a lot of anxiety

I think that as a country we need to begin to change the conversation around children with disabilities to what forms of support that families raising children with disabilities can get?

We are very quick to judge parents should they do the “Unthinkable” but even before that parents get to this level, they have tried many things to help their children.

The month of March is designated as Cerebral Palsy awareness month, let for also focus on those parenting these children; can we have parks, play centres, institutions accepting these children in their facilities?

I know a couple who cannot go to church together because they have a child with cerebral palsy, they are unable to take the child to church for fear of stigma so they rotate church attendance, if the man attends this Sunday, the woman stays home to take care of child then the following Sunday the woman goes while the man take care of child.

For others the presence of a child with cerebral palsy have resulted in permanent conflict in the home, there is no peace, couples simply cannot agree of how they can handle and manage the child, they child who is supposed to be a blessing turns to be a burden.

Can we begin thinking of the families’ wellbeing? If the family is unstable, definitely the child will not be safe.

The Special Mothers Project prioritises the total wellbeing of the family with special attention to the mother.

In the Month of March let’s pledge to change our attitude not just towards children with cerebral palsy but towards persons with disabilities.

Let’s all remember that these persons have one disability but 99 other abilities