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
