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Challenges of parenting children with disabilities

DOREEN NAWA, Lusaka
NO-ONE would claim that parenting is easy, but when one has a child with a disability, there is a whole new level of challenges involved.

There are different issues with special needs children depending on the kind of disability and their age, but mobility is a common challenge among the disabled people.
It is in fact more of a challenge in children because they still have to find out how to get from one place to another and this makes raising children with disabilities to have more enormous challenges.
Due to the levels of poverty, most families of disabled children and adults countrywide cannot afford to buy mobility aids designed to make day-to-day life a little bit easier.  
This renders disabled people to be prone to being isolated and miss out on opportunities their able-bodied counterparts may enjoy.
Julian Sakala of Lusaka’s Kamanga township says having a disabled child has changed her life completely.
Ms Sakala has an eight year old daughter with cerebral palsy. When her daughter was born with the disability, medical staff at Chelston Clinic told her to put everything in God’s hands and put her in a home for children to be cared for, have another kid and move on.
She further adds that she was also told that there was nothing that would really add value to her life if she opted to keep the daughter herself. And it was through her frustration and anger that Ms Sakala decided to prove the medical staff wrong.
Using her sculpting skills, she started designing mobility equipment and supports. And one day during the usual visits to University Teaching Hospital (UTH), she came across a newsletter with information about a company called Appropriate Paper-based Technology (APTERS) that manufacturers everything from wheelchairs to posture supports, which can be easily assembled, fitted and maintained by local therapists and technicians.
APTERS, a Lusaka-based organisation set up in 1990, uses paper-based technology techniques to make mobility aids for disabled people and on average it produces more than 675 mobility aids a year.
APTERS is run by a group of physically, challenged entrepreneurs who are working to provide a service for people with disabilities and their families in Zambia.
APTERS founder and director Kenneth Habaalu says his organisation is designed to benefit children with cerebral palsy by using all sorts of paper to manufacture equipment that helps rehabilitate children.
The equipment made using papers ranges from standing frames, walkers and special chairs and is provided at a minimum fee or free of charge depending on the economic status of the family acquiring it.
“When APTERS was formed, I didn’t know it could have such impact to the many children in the country. The majority of the children are assessed in Clinic 2 at UTH and doctors then make a request in accordance with the child’s needs. The need for mobility aids is enormous.
“When the organisation started, we were finding it difficult to identify children with disabilities in the community. People didn’t want others to know they had a disabled child at home,” he explains.
Mr Habaalu remembers a mother who told him that she would usually leave her child in bed when she goes to the market.
“To help her daughter sit, she told me, ‘I dig a hole outside the house and put the child in there’. To stand, she would tie the child to the tree with material. I think it is inhuman to do such things,” Mr Habaalu says.
With limited resources, APTERS’ team of eight, uses recycled paper and cardboard to make papier maché chairs, standing frames and walking aids, as well as teaching blocks for physiotherapy.
People world over have been finding new solutions and approaches to improve the quality of life for disabled people.
Fighting for disability rights in Zambia is a huge task but some people are taking it upon themselves to make a positive change.
Disability, HIV/AIDS human rights activist, Elijah Ngwale says parenting a disabled child usually involves a great deal of patience and can be very time-consuming.
Mr Ngwale, who is visually-impaired says it is important to resist the temptation to do everything for a disabled child by allowing them to have some level of independence to increase their self-esteem as well as lighten parental load.
He acknowledges the growing trend among parents with disabled children to hide or abandon the disabled children.
“It is saddening that some parents have a tendency of using special schools as dumping sites for their children with disabilities. It is common for parents of a special needs child to feel guilty if there are other children in the family as they tend to receive less attention. Children generally learn to adapt to the needs of the special situation they are in,” Mr Ngwale says.
From his experience, Mr Ngwale says disabled children generally become very nurturing, caring adults.
“Often, couple relationships suffer when there is a child with a disability in the family. Discovering a child’s special needs is often a confusing and painful process for parent,” Mr Ngwale adds.
It is normal for parents to want to blame somebody – anybody – and to bargain in the sense of thinking that changing neighbourhoods, schools, or doctors might make the problems go away.
Grieving for what might have been follows, and finally parents can come to accept the child’s strengths and weaknesses and try to figure out a helpful plan of action.

 

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