Many Children diagnosed with Cerebral Palsy end up being killed! They are sometimes referred to as “children of the river god” or snakes and their parents are advised to kill them by dumping them into a river or leaving them in the forest.The parents are easily convinced to do this because our society shows serious stigmatization towards such children. Many educational institutions shun them, denying them their right to basic education.
These children are not treated well in most health facilities and they are just seen as a curse on families.Mothers are left to be frustrated with these children and they tend to hide these children till they die.
The fact is that killing a child with cerebral palsy becomes the easiest option for many parents, it looks like society has no place for them and many parents do not see a bright future.
Meanwhile these children that is children with Crebral Palsy given the necessary help can not only reach their full potential but also have an impact in society and the world. It must be noted that children with Cerebral Palsy are intellectually able to learn anything. They are able to think abstract and early interventions could help them have a relatively better life.Mothers are the main focus in this project, most mothers with such children get depressed, many are persuaded to think that it is the devil that has attacked them and end up moving from one prayer camp to another or from one shrine to another looking for help.
In such situations, empowering the mothers also means empowering the child
Eventually these mothers do not do anything concrete to help their children. The Special Project believes that once the mothers are empowered, they will be better positioned to help their children live relatively better lives.
Hence the Reach Out to mothers to encourage them to share their stories and train them to give their children the basic therapies they need to enable them practice at home with their children.
WORKSHOPS SO FAR
In the year 2016, the Special Mothers Project partnered with two organizations: Sharecare4u and Multikids Foundation to organize workshops for mothers.
Both workshops attracted about 30-35 mothers/parents of children with cerebral palsy.
Multikids Foundation has promised to hold a quarterly workshop for parents.
The first workshop organized in collaboration with shareare4u with support from Diligent Care services and the Accra Physiotherapy Centre was held on 2nd July 2016 while the second workshop was held in collaboration with Multikids Foundation was held on 1st October 2016.
Subsequently the project has had series of workshops and meetings with especially mothers of children with cerebral palsy
Moving forward the project will not only want to have workshops for parents but teachers, owners of Day care centres, staff of the Department of social welfare, day care attendants, health professionals. The Special Mothers Project is also looking at having a consistent airtime in mainstream media where families will have the opportunity to share their struggles and their successes with the general public and link to how policy could be implemented to ease the burden of parents especially mothers.
WORLD CP DAY CELEBRATION: – The Special Mothers project coordinated with organizations like the CBM/Presbyterian Health Services, Cerebral palsy Ghana and Centre for Employment for Persons with Disability to organize the World CP day on the 5th of October in Dodowa. It is worth to note that the celebration of World CP day had not been celebrated on a big platform as it was celebrated this year in Ghana. Let me give a special mention to Nana OyeLithur, Minister of Gender, Children and Social Protection for gracing the occasion
Since then the Special Mothers Project has been a major coordinator of the World Cerebral Palsy Day Celebration in Ghana
The project will use workshops for various groups and stakeholders to galvanize support for policy change.
Ghana has launched the inclusive education policy, however, in terms of implementation, there is the need for further effort to ensure full implementation, for example, the government system does not take children lower than age six (6) into primary schools.
Unfortunately children with cerebral palsy are usually refused admission into the crèche system which is usually run by private /non governmental bodies, hence very little can be done in terms of getting children with cerebral palsy into the crèche system.
Where they are accepted parents are either required to accompany and sit through school hours with their children or provide a care giver which attracts extra charges.
Other schools accept children with cerebral palsy only on condition that the parents pay much higher than the school fees an average child pays, this mean that parents with limited income cannot get their children into school meanwhile having a child with cerebral palsy requires extra income to support in terms of seeking therapy etc
And yet in many cases one of the parents usually the mother is forced to abandon career to take care of the child which brings a lot of financial constraint on the family.
In addition to this, it seems there is very limited knowledge even among health professionals on cerebral palsy and this hinders information about the condition to parents, most parents are thus forced to seek spiritual and herbal treatment instead of gaining the necessary and needed knowledge and understanding to enable them efficiently manage their children with cerebral palsy.
Sharing knowledge between parents, health professionals and educationists will go a long way to facilitate understanding of the real situation and possibly dialogue on the various approach to lessen the burden on the parents.
Therefore various workshops with the stakeholders on the current situation and a jaw-jaw on the best way to practically include children with cerebral palsy into the social system is a first step towards achieving a practical inclusive policy in Ghana.
Talking to church groups and other social groups to create awareness and understanding of cerebral palsy while winning empathy from society
A slot for a media programme where families raising children with cerebral palsy specifically and other special needs in general share their stories linked with policy where we point out the gaps in existing policy, suggest ways in which such gaps could be filled and spur development in that direction.
The project has adopted a government Special/unit in Madina school for upgrade to enable children with cerebral palsy have access to education. The School will be used as a resource centre and a place where parents can safely take their children to enable them go and work.
The project is in the process of also adopting a centre started by one of the mothers to promote and enhance the work.
The Special Mothers Project hopes to adopt about three of such centres in the Greater Acrra region an encourage the setting up of many more across the country.
It must be noted that the project will not primarily run such centre but will work to facilitate the work of such centres
As part of facilitating the work of such centres, the project is planning on engaging two mothers as care givers to support the special education teachers in such centres to serve as a motivation for the teachers.
The project would also support therapy services in such centres to make it one stop centre where quality care is assured.
This will enable mothers in the vicinity to be able to drop off their children with Cerebral palsy in the school and pick them in the evening.
As it is now, many mother with children who have cerebral palsy are forced to abandon career or work and stay home to take care of their children.This puts a lot of financial constraints on such families.
The Project’s major challenge has been dedication from mothers. Many mothers have become apathetic, probably given up on their children with cerebral palsy and are not so sure whether policy change is possible.
The project started as an online advocacy and communication is done mainly through whatsapp, therefore it is difficult getting information to mothers who are not online or do not use the whatsapp platform.
We count on your funding support without which all these beautiful plans remain on paper