Children with neurological disorders stigmatised

The Chronicle

Rejoyce Sibanda, Chronicle Reporter
Mr Willard Madyiwa (27) from Cowdray Park suburb was the only male at a meeting attended by parents with children who have neurological disorders such as cerebral palsy, hydrocephalus, autism and Down’s syndrome in Bulawayo’s city centre.

A father of one, a three-year-old boy who suffers from cerebral palsy, Mr Madyiwa is one of a kind; the burden of looking after children that have neurological conditions normally falls on their mothers.

Neurological disorders are diseases of the central and peripheral nervous system affecting the brain and spinal cord among others. They include epilepsy, Alzheimer, Parkinson’s disease, cerebral palsy, hydrocephalus, autism and Down’s syndrome.

Cerebral palsy which Mr Madyiwa’s son suffers from is caused by abnormal brain development, often before birth and it is marked by impaired muscle co-ordination or other disabilities.

During the meeting held at the National Art Gallery last Saturday, Mr Madyiwa said it was a pleasure being able to take over from his wife and be there for their son.

He said some family members believe that his son’s condition was caused by witchcraft but he does not believe that. “I am not ashamed of walking around with him in public or doing anything with him just like how these cowardly men see them as a burden and abandon them.

We love and cherish him because he is our bundle of joy. There might be negative society, family or the in-laws’ inputs regarding our son but that is not going to have any impact on us,” said Mr Madyiwa.

He said he is unemployed and that is a challenge in terms of money to buy medication for his son when he is sick, providing the food that he eats, taking him to physiotherapy and perhaps getting him a special needs stroller designed for children so that it is easy to move around with him.

He encouraged other parents to always show love, attention and support for the children with neurological conditions. He said they should provide most things for them such as celebrating their birthdays, buying them gifts, taking them to school and just appreciating them.

His wife, Mrs Selina Madyiwa (24) told Chronicle that some family members have falsely accused her of using umuthi which caused the child’s condition but her husband has stood by her.

Mrs Madyiwa said she appreciates the love, encouragement and support that her husband gives her and that she has learnt to take it one step at a time even if it is not easy.

Mrs Lynnete Magunga (34) from New Lobengula suburb has twin daughters (7) suffering from Attention-Deficit/Hyperactivity Disorder (ADHD) with a spectrum of autism. ADHD is a chronic condition including attention difficulty, hyperactivity and impulsiveness. It may contribute to low self-esteem, troubled relationships and difficulty at school or work.

In an interview she said her children face discrimination and people say they are “crazy.”
“My children cannot speak but they can hear. They are affected by loud sound, too much light, material texture and bright colours and this is a challenge when you are moving around with them where the environment does not filter such things for them.

The twins are hyper active, are unsettled, cannot control themselves and they throw tantrums when they start acting out. This is what makes the society regard them as insane children and associate them with bad cultural misfortunes which require traditional healers,” said Mrs Magunga.

She encouraged mothers to not give up on their children and accept them as they are because they can be something in life. She said that she is a very proud mother as her daughters are very good with computers and that it is promising a bright future.
Mrs Magunga said she faces transport challenges as she uses public transport to take them to school at Riverside Stimulation Centre.

She said she wishes that Government can have certain classes to cater for these children in Government schools because the school fees she is paying is expensive.

“In terms of autism, it is not curable, one just has to live with it and I have learnt to accept that because of my husband who accepted it first. There are no words that can describe how much he loves his girls and that is something that stays close to my heart. It is like he loves them more than me and the support that he gives is priceless.

“It is hard for some family members to understand it fully but it is promising that they will get to understand it and accept it. I also do not fear having other children as well,” she said.

Chronicle had a conversation with Ms Saneliso Dube (42) from Pumula North suburb who said her 13-year-old child developed cerebral palsy last year.

“When she was 12, it was discovered that she had developed cerebral palsy and it’s still not known what caused it.
“The love for my child did not change even though it was not easy. I have obtained a lot of knowledge regarding neurological disabilities through countless workshops that I have been attending so that I best cater for my girl,” said Ms Dube.

She said parents that have children with neurological conditions should accept and have unconditional love for them just like how she has for her daughter.

Ms Dube, however, faces financial constraints in providing for her as her child’s father passed away last year.
“So things have been really hard for us. She is now a big girl so she needs sanitary wear. She had started attending school at King George but since the beginning of this month she has not attended because I do not have money to pay for her transport. I do catering as a means of trying to provide for her but I stay at home most of the time monitoring her,” she said.

Another parent, Mrs Ntombizodwa Mpofu (44) whose child suffers from hydrocephalus said her son is sometimes mocked and insulted because of his condition.

Hydrocephalus is characterised by head enlargement in infants due to building-up of fluid in the cavities deep within the brain.
“I believe God had a reason why he gave me a son who has hydrocephalus.

Mr Willard Madyiwa (27) and Mrs Selina Madyiwa (24) from Cowdray Park suburb in Bulawayo who have a three-year-old son suffering from celebral palsy

I do not have to make sense of it but I am a proud mother. Society might throw all the negative energy on us or things may be hard but we will keep pushing.

It breaks my heart when other people call him names and insult him because of his big head.

He learns at John Slaven Primary School and he is very intelligent. My love for him cannot be put in words. Through counselling I’ve learnt to closely monitor him, observe and be there for him every time,” said Mrs Mpofu.

She said love should start at home so that children with such conditions are able to appreciate it from outside.
Mrs Mpofu said she is unemployed and thus struggling to pay her child’s hospital bills and the expensive medication that her son is taking.

Ms Chantelle Shangare (37), the head of Mothers of Special Heroes Trust (MOSHT), a non-profit making organisation that was formed in 2021 to assist mothers, caregivers and guardians of children with neurological disabilities said the trust is working towards having a respite centre where mothers will leave their there so that they are able to go and eke out a living.
Ms Shangare said she started the organisation after her son developed cerebral palsy.

“I started this organisation as a way of getting together with mothers who have these special children so that we comfort and share our experiences.

Guidance and counselling is also given so that mothers get an idea of how it is like to be a special hero mother. It is not easy and great support and encouragement is needed from each other as we can all relate to the situations,” said Ms Shangare.

Article Source: The Chronicle

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