The stress of taking care of a down syndrome child can be daunting. When that child is discriminated against in school, it becomes even more disturbing. Chika Mefor-Nwachukwu narrates the pain of the father of a down syndrome child, and expert’s opinion on the issue.
In 2019, Joshua Mava, a parent of a down syndrome child, Joan, went to his children’s school for the usual termly Open Day, a day set aside for parents to speak one-on-one with the teachers of their children and ascertain their progress in school.
He was quite happy with the progress of his children after going through their work, so after thanking the teachers for a job well done, he had also wanted to extend his gratitude to the school proprietress.
He knew how tedious taking care of a special child could be and wanted to compliment her. But he got the shock of his life when the proprietress had bluntly told him that she will not accommodate his daughter the next term.
Mava had asked her the reason and she simply stated that it was due to the fact that she is down syndrome.
“ She said that other parents had complained about my child being with their children in the same class and they are refusing to bring their children to her school because of my child. I was shocked and didn’t know what to tell her. I was amazed at the words coming out of her mouth especially with the fact that she was a grandmother,” he narrated with sadness.
Mava who was in shock had simply thanked her and left her office, vowing to remove his other two children from the school.
“I decided to withdraw my other children from the school since they won’t accommodate their sister,” he stated.
Mava’s pain is deep as he explained that even when a child has special needs, she needs to be treated as human and not be discriminated against.
“I am amazed at what happened at the school. As a father, you feel bad that your child is said not be worthy to be in the class. That’s just my pain,” he said.
He is further pained because apart from paying Joan’s school fees, he had also hired the services of a physiotherapist for her.
“The physiotherapist goes to the school and teaches her. So I don’t know why the proprietress acted that way. I just take it that is it how God wanted it,” he said.
Mava had earlier registered his daughter at a school for special needs but the teachers there had advised he put her in a conventional school.
“They said that she was far much better than those in the school and that they might slow down her learning process. That was the reason we took to the conventional school,” he narrated.
Joan who is now seven is in another conventional school and her father said she is doing quite fine.
“My daughter brings me joy and happiness. In my WhatsApp’s Displayed Picture(DP), she is there. Anytime I look at her, I smile because her coming to life was God sent,” he spoke glowingly about his daughter.
He revealed that though taking care of a child with needs could be stressful, there is great joy attached to it.
Mava who stated that his daughter loves to sing and dance, urged parents with special need children not to be discouraged but to work towards helping their children to achieve their potentials.
“Everybody knows my daughter in the church. She will mount the pulpit to sing and dance. She leads prayers at school and home. In school, the teachers said she greets a lot. She is a bundle of joy. I will tell you that she is a rare gem,” he said.
Down syndrome is a condition in which a child is born with an extra copy of their 21st chromosome; hence its other name, trisomy 21. This causes physical and mental developmental delays and disabilities.
Dr Zubair Abdulahi in his write-up, Understanding Down Syndrome, explained that there is no racial, economic, or geographical predilection in the development of Down Syndrome.
According to him, It is also estimated that they deliver about 6,000 children with Down Syndrome in the United States alone, every year. It is estimated that there are over 5 million people living with Down Syndrome worldwide today.
While the causes of down syndrome are not really clear, he added that the commonest risk factor is the age of the mother during pregnancy with older women (>35) being more at risk. The risk of development increases from 0.1% in 20-year-old mothers to 3% in 45-year-old mothers.
A few of the common physical traits of Down syndrome, he revealed are low muscle tone, an upward slant to the eyes, and a single deep crease across the center of the palm.
Other features also are seen which may include: mild-to-moderate intellectual disability resulting in delayed milestones, stunted growth, flathead, large tongue, flattened nose, and abnormal ears and teeth. They also have congenital heart disease in a large chunk of cases. Individuals with Down syndrome have an increased risk of developing several medical conditions.
Speaking on taking care of down syndrome children, Administrator, Down Syndrome Foundation, Mrs Aanu Senbanjo, urged parents with such children to concentrate on bringing out their potentials, as they have so much to offer in that aspect.
“Look for a place where the child will learn and benefit, not necessarily in an aspect of academic alone but skills and therapeutical services,” she said.
She advised parents who have encountered the same issue as Mr Mava not to be discouraged but ensure they send their children to places where their skills will be looked into and harnessed, order than focusing on academic alone.
“Quite a number of them are very good with skills, entertainment, modeling, dance and choreography, piano playing and all. So why force them into learning and time is going. You will see a teenager still in Primary 2, while the child can do fanatically well in various skills. Why do we have to waste such talents?” She queried.
Aanu added that while Inclusive education; education that includes everyone, with non-disabled and Disabled people, is encouraged, there are cases of down syndrome that are severe and are beyond what the regular teacher in a conventional school could handle.
She revealed that their Foundation, the Down Syndrome Foundation has helped to offer counselling services to parents of young children with down syndrome, especially those with developmental issues.
“The foundation started as a support group for families before we had a full-blown center that caters for children with congenital heart disease like a hole in the heart and most of them are from indigent homes and they needed to be flown abroad for correctional surgery,” she said.
Aanu lamented that since the Foundation depends on supports from individuals and organizations and with the COVID-19 pandemic, it was unable to send many of the children on waitlist abroad and that some of them died as a result of that.
“We managed to send four families abroad for the correctional surgery,” she said.
She added that if the government can support the Foundation, it will help in keeping alive many of the children that needed the surgery.
She also called on the government to create awareness for people to stop the stigmatization of children with down syndrome, urging it to establish facilities that will help the children live their lives optimally.
For parents of the children, she said, “ Don’t be despair. It is not a death sentence. Don’t lock these children in the room and go to work. Don’t treat them like animals. Just focus on knowing their potentials and you will see what they can do.”
