Support parents of children with special needs

BY: Starry Quarshie

The term special needs covers a wild spectrum of disabilities such as down syndrome, autism and attention-deficit/hyperactivity disorder (ADHD). But all these have something in common. They all face physical, mental and emotional challenges that make it difficult for them to cope with everyday living. My focus is cerebral palsy because I identify with them.

What is the fate of parents and caregivers of children with cerebral palsy in Ghana? This is not my story but our story. It is the story of energetic, dynamic and intelligent women whose dreams and aspirations have been shattered just because they have children with cerebral palsy. I have stayed at home for seven years without working because of this situation. I know mothers who have master’s degrees but have had to stay at home taking care of their children for 18 years and over.
Cerebral palsy has to do with the brain and weakness. This is the result of brain injury or brain malformation; and it can happen during or after birth. These children have delayed milestone in development - delay in sitting, standing, walking or talking.

Personal challenges of parents and caregivers are based on situational factors. That is, each family will have its peculiar challenges. Based on financial support, the family could get a paid nanny or caregiver. Even families that have all these will still have issues.

Most parents who do not get support try to do away with the children by mercy killing. This is real, mothers spend their entire lives in the four corners of the room or home because their care is 24/7. Even those who can pay for nannies to take care of these children still have to stop the work at some point and come back home to take care of these children because of the ill treatment by some nannies.

These children are neither able to talk nor do anything on their own. There have been situations where parents come home to find their children with severe injuries, an empty house and stolen items. Even though this may sound funny, it is so real. Some mothers get so depressed that they consider suicide. Most women are divorced because their husbands were not able to cope with the financial, psychological and physical stress that comes with the situation. Fact is that we are tired of hiding these children. I believe it’s a collective responsibility. It is incredibly tough to have a child with special needs. After the hectic job of taking care of these children indoors, parents face the emotional problem of social stigma outside. Other mothers wouldn’t want their children to get close. Just imagine being in a shop or church where your child jerks and screams unnecessarily; and imagine 300 faces staring at you and ready to judge you for what they have no clue about. We know Ghanaians are loving people; they should help us create the conducive environment where we can feel free with our children. We love nature, our children want to see the sun, the star and moon, in fact we are tired of staying indoors.

Medication is too expensive, so most parents and caregivers can’t afford it. Some children are not on medication at all, so if the government can subsidise the cost of drugs it will go a long way to help. We believe that the government could do more by putting systems in place.

When it comes to education, only few of these children are accepted in schools. The schools are so expensive that 80 per cent can’t afford and, therefore, women are stuck throughout the day with their children. Policies can be put in place so that both government and private schools have a specific intake for children with special needs. Mothers can also be trained as caregivers or teachers. The media is doing great by using their platform as a channel of communication for public education on this issue. Because most people are ignorant, they call them snake children or marine children. If more education is done, more research will be done. Also, people will understand our plight and change their attitudes towards us. More students will study physiotherapy and occupational therapy and children with special needs will get maximum care at the hospitals.

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Our children are our responsibility. Your support could be in the form of showing love or acceptance. This will help us push our way through to enhance lives. It is a collective responsibility and we can do this.