Mrs Mary Amoah Kuffour and her 19-year-old daughter, Nana Yaa, are not new to most social media users, particularly those active on Facebook.
On her page, My Journey with Autism, Mrs Kuffour shares her journey as a parent to a child with autism revealing their challenges while sharing tips to a following of over 415,000 people.
Over the years, one thing followers on the page look out for is Nana Yaa’s stunning images like the one gracing our cover page. These images when shared receives thousands of comments and shares from Nana Yaa’s “online aunties”.
Mrs Kuffour does not only share these glossy images but shares their low moments, sometimes even shedding tears as she tries to find answers to some of their challenges.
In an interview with The Mirror last Tuesday, she said opening up about their journey had not only helped in getting more resources from experts and families with similar conditions but had also affected how society saw people living with autism.
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterised by challenges with social skills, repetitive behaviours, speech and non-verbal communication.
Denial
Mrs Kuffour said like many people, she did not understand what the condition was and so for a long period, she was in denial hoping that God will perform a “miracle”.
“When we realised Yaa was not talking at about age three, we assumed she will eventually grow out of it. Autism has no look so physically; you couldn’t spot a disorder. Most people who saw her asked us to pray as it was likely to be a curse or spell cast on her by evil spirits.
“I am literate, a trained teacher but I believed these stories. Desperation can make you do unimaginable things no matter your level of education. I already had two boys and had prayed fervently for a girl, here we were, God had answered my prayers and this was the challenge it came with?”
She said for seven years, she and her husband resorted to all sorts of “akwantser3” (spiritual directions) and unthinkable advice from people till they finally understood that they were not under any spell.
“We put her in mainstream school hoping that seeing other children talk and interact will build her social skills but she was just there, just roaming about while the children studied. We couldn’t accept that our daughter was different and needed to be supported differently. We looked forward to a day when our much awaited miracle will happen,” she narrated.
She recounted her near death experience when a “Man of God” directed her to fetch water from a river between Techiman and Kintampo in the Bono East Region for Nana Yaa to drink.
According to him, she would start talking after drinking from the said river and being a mother who was ready to go any mile to see her daughter recover, she set off on a journey which took over eight hours.
“I left Accra on a night bus and arrived the following morning. When I finally got to the river bank, I could feel people stare at me. I am sure some assumed I was mentally deranged. Apparently that was where rituals were performed by traditional rulers in the area and no one dared to go there. The fish in the water were huge and as I walked into the river I could see them twirl like snakes. I could have drowned, been bitten by animals in the water or even arrested if I had been reported to the traditional leaders… all in the name of looking for water that will make my daughter speak,” she recounted.
There was another “Man of God” who directed that she should collect discarded uncooked pieces of vegetables and other food from a big market.
His explanation was that it was only “useless” people who ate from the floor and so if there was any spirit that had exchanged her destiny spiritually, they would leave as she was of no use.
She will usually go to the Achimota Market between 6 p.m. and 7 p.m. when the market women had left, in search of her “special ingredients”.
“These are just two of the many things we did in the attempt to find “healing” for our daughter, some of the instances bring tears to my eye but I am grateful we finally came to understand the situation and have supported her in the best way possible in the past years.
Parenting support
Mrs Kuffour told this reporter that she found solace in a parents’ group online that opened her eye to the condition and how to support her daughter in different activities.
Most of the contributors on the page were parents and experts in advanced countries who understood the condition and offered free resource.
In addition to the online resources, she connected with other autism centres in Accra and even became an Early Interventionist and Coordinator at AwaaWaa2, a centre for children with special needs at Haatso in Accra.
With her understanding and support from experts in and out of Ghana, she started the Klicks Africa Foundation at Dome in Accra to offer the necessary skills needed to face the challenges of raising children with Autism and other intellectual disabilities.
The foundation which has an Early Intervention Centre for young children and a Vocational Training and Resource Centre for youth also provides counselling, parent to parent coaching, family therapy and home therapy for families.
“We have seen great improvement since we took Yaa out of main stream school and focused on a specialised learning routine for her and I thought it was important not only to be an advocate for children and families with special needs but also create a space where they will get the needed help and expertise.
Funding
Running the facility does not come cheap as she has employed occupational therapists and other experts who support the children and their families.
Currently, out of the about 90 children at both facilities, 50 per cent of them are on either partial or full scholarship as their parents could not afford the full cost.
The facility depends largely on the benevolence of some individuals who have committed to supporting them on monthly basis.
“They need special diets and different treatment which is expensive. We charge parents who can afford the fees but there are many others who can’t even afford transportation cost to the facility. There are many more people we can support but the problem is funding,” she explained.
The facility, she said, could admit more children if they had the necessary financial support. She therefore appealed to individuals and organisations to adopt some of the children.
“Adoption is not necessarily taking them to live with you. You can pay their fees, cost of transportation or support their daily upkeep. Having a child with special needs is overwhelming and financial challenges only worsen the situation. The stories from such parents are disheartening. Some have even been advised to give their children slow poison just to end it all.
Support for Nana Yaa
She said with the improvement in Nana Yaa’s condition, people had seen the difference the right support could make.
“Yaa loves to dress up and corporates very well during photo shoots, she has a beautiful skin and could be used by textile companies or Ghanaian owned cosmetic producers as their models. These commercial endorsements do not only become sources of revenue for her but also encourage other families with children who are different to continue supporting them,”
She expressed gratitude to the people who support her advocacy and the business owners who work with Yaa.
Source: graphic.com.gh
