Nurturing a child with autism - Dorcas Akyeampong Boadi shares her story
At the age of seven, Ms Dorcas Akyeampong Boadi’s daughter, Akua, was diagnosed with autism.
Advertisement
Finding out, Ms Boadi was initially filled with mixed emotions of fear, uncertainty and love, but for 34 years, she has embraced her role as a mother wholeheartedly.
From speech to cognitive, behavioural, occupational therapy and extensive research, Ms Boadi continues to provide the best possible care for her daughter, who is now 34. In fact, she was motivated by her daughter to get a Bachelor of Science degree in Nursing, with a specialty in Learning Disability, at the University of Nottingham in the United Kingdom (UK).
Ms Boadi also holds a degree, which qualifies her as a Specialist Community Public Health Practitioner, also known as a Health Visitor, from the University of Derby in the UK. In addition, she has another degree in Health and Social Care from the Open University, also in the UK.
In a chat with The Mirror in Accra on Monday, Ms Boadi recounted, “There were moments of frustration and sleepless nights, especially during the early stages. I used to receive lots of complaints of mischievous behaviours, not doing assigned work, failures and giving her teachers and mates a hard time.”
Through her foundation, Ms Boadi donated items to the Department of Social Welfare of the Ministry of Gender, Children and Social Protection
It was even more challenging combining this with work and school, but she refused to let go of hope. Today, Ms Boadi actively champions the rights of individuals with autism and special needs and their families through her charity, the Autism and Special Needs Foundation (AUSNEF).
She is also an entrepreneur and the owner of D’BAK Beauty Salon at North Kaneshie, Accra, and D’BAK Beauty Supply shop at Spintex, Accra.
Ms Boadi’s childhood
According to Ms Boadi, she was born to Mrs Vida Boadi and the late Apostle John Kofi Boadi and grew up in the suburb of North Kaneshie. She had her basic education at the St Theresa’s Preparatory School in North Kaneshie and continued at the Aburi Girls Senior Secondary School for her Ordinary Level and Winneba Secondary School for her sixth form.
Shortly after, the entrepreneur said she ran her own fashion and beauty business called Dash Ladies and got married later on.
Daughter’s autism diagnosis
Ms Boadi said she noticed that her daughter was different when she continuously failed at simple tasks both at home and school, threw random tantrums and had a hard time understanding simple instructions.
Ms Boadi distributing some items at a charity event
“My daughter’s case is that of autism with cognitive or learning disability" She was in good physical shape, so I didn't pay much attention to her behavior. I hoped that she would naturally outgrow it over time," she remarked.
She said that when the behaviour did not change, teachers, some friends and family drew her attention to it. Some of them, she said, claimed her daughter’s behaviour was a curse, bad omen, witches and wizards and implored her to pray for deliverance.
Ms Boadi explained that she had no idea about autism at that time and resorted to prayer for her daughter. When that failed, she sought medical help in the UK, since her daughter was a citizen. To ensure proper care and assistance in terms of school, lifestyle and the health of her daughter, Ms Boadi said she relocated to the UK, where she lived for 20 years until three years ago.
Caring for Akua
Sharing her journey, Ms Boadi said her biggest support after the diagnosis was friends and family who understood the condition, as well as the special needs schools and support in the UK. There, Akua was able to go through special basic and higher education schools.
Ms Boadi in her beauty supply shop at Spintex, Accra. Picture Credit: ERNEST KODZI
“That girl is actually very strong. She has suffered through bullying, stigmatisation and neglect, both in the UK and in Ghana. Here in Ghana, some parents either withdrew their wards from the schools my daughter attended or asked their children not to play with her,” she added.
The cost of therapy was also not cheap, she noted.“Currently in Ghana, an hour or two of a speech therapy session can cost between GH¢1,000 and GH¢1,500. You can imagine in the UK”, she said.
She added that there were times when she had to skipped work to attend to her urgently, and had to hire a trained caregiver for her. Fortunately, Ms Boadi said the UK has a good system such as laws, individual-needs-structured education, financial aid, advocacy groups and other support, especially if one is a citizen.
“Due to this, coupled with my educational background and job, I was able to handle her needs,” she said.
Coping with life
Ms Boadi said there were times when she felt exhausted. “I mean, while some parents were celebrating their child’s graduation, I was celebrating her ability to write a coherent sentence,” she noted.
Ms Boadi (left) loves hanging out with her godson, Alex Appiah
The day I found out about her diagnosis was the day I dedicated and sacrificed my all to her. These included missing out on relationships, personal long-distance outings, higher educational attainments and having more kids.
“I was afraid of the unknown. What if I had another child with a similar condition?” she said. Speaking on her hobbies, the entrepreneur said she loved disk jockeying, dancing, and singing.
Her daughter now
Ms Boadi said Akua currently works as a salon assistant at her shop in North Kaneshie. Thankfully, her condition has improved and she is now more independent. “She is very artistic and loves to sing and travel with me. She will melt your heart when you meet her,” she added.
Ms Boadi said she has the support of family and friends, allowing her to have some time for herself. She noted that her major worry now was how her daughter would manage life in her absence.
AUSNEF foundation and challenges
Her foundation, AUSNEF, was borne out of a desire to create a space where families like hers would find solace and support through cash and kindness. Since its inception three years ago, her team has made donations of food items, clothes, cash and medical needs to several families.
According to her, the most recent donation was made at the Tema West Municipal’s Christmas event last year. Speaking on challenges, Ms Boadi said it was mainly with funding, as some Ghanaians and companies are reluctant to support. She added that so far, she had funded most projects by herself or through friends and family.
“There is also the issue of medical supplies. An example is drugs for autistic children who also suffer from epilepsy. It would be great if big pharmaceutical companies could support it,” she said.
As World Autism Acceptance Week starts on April 2, this year, Ms Boadi is advocating for governmental reforms within the education, health, legal and socio-cultural systems to make life more bearable for children living with autism and their parents.
Writer’s email: [email protected]