Autism Specialist, Aanu Senbanjo Discusses The Myth Surrounding DS And How She’s Helping Kids With The Condition Break Boundaries

Mrs. Aanu Senbanjo is an autism specialist and the administrator of Down Syndrome Foundation Nigeria. In a chat, the expert discusses the myth surrounding down syndrome, DS and how she has been managing children with developmental challenges for two decades with PUNCH HealthWise.

See Excerpts Below…

In this part of the world, people attribute Down syndrome to a lot of causes and myths. As a specialist, what is Down syndrome and how does it occur?

Down syndrome is a congenital condition, but a lot of people think it’s a disease. It is a condition that affects a child born with an extra chromosome. Chromosomes are small ‘packages’ of genes in the body.

They determine how a baby’s body forms during pregnancy and how the baby’s body functions as it grows in the womb and after birth. Ordinarily, a baby is born with 46 chromosomes, but babies with Down syndrome have an extra copy of one of these chromosomes.

Are Nigerian parents aware of this condition and how are they relating with their children with Down syndrome?

I won’t say that they are quite aware of the condition, because of certain myths that are associated with children with Down syndrome and children with special needs, generally. Till now, many parents believe in those myths.

First, they believe that children with Down syndrome are from the gods. They believe that they should not socialise and should be locked up at home. They believe the children should not be seen with other children.

Those myths are the major problem and they prevent Nigerian parents whose children are living with the condition from taking care of them properly.

Another thing is that most parents live in denial, even when they are aware of the condition. Once you tell parents that their child has a developmental challenge, they reject it immediately.

It takes them time before they accept that child. Many of them lock these children up in churches for prayers. Others lock them up at home. But there are some parents who love and invest in these children, despite their challenges.

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What does managing children with this condition look like?

So far, so good. It’s running into two decades now that this foundation has been in existence. The Foundation has a project known as ‘Save a Life Project,’ and it is in partnership with some teaching hospitals in the country.

They include the University College Hospital, Ibadan; Lagos University Teaching Hospital, Idi-Araba; and Lagos State University Teaching Hospital, Ikeja.

Once a child is detected at a very tender age or at birth, the foundation, through its ‘Save a Life Project,’ offers support to the family of such child. We have many of them that we have supported and are still supporting. The support is more to families whose children are diagnosed with congenital heart disease alongside Down syndrome.

We have those from indigent homes and we get support from organisations for those of them who need corrective surgeries. We send them to India and other parts of the world for the surgical interventions.

Once a child is detected, the foundation takes it up from there and commences intervention. We train them and some of them have become advocates. Our students are doing well. During the last general elections, many of them voted for the candidates of their choice.

One of our students played a major role in Super Story, a Nigerian TV soap opera. In fact, he was the main character in the drama series and he acted very well.

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Children with Down syndrome are said to do well when they get early intervention, can you explain further?

When there are early interventions for the children with Down syndrome, they do well. Children with Down syndrome have good social skills. Some of them even have exceptional skills, and so, parents should stop locking them up at home. It is important to harness their social skills.

What sort of interventions and treatments do they need? There is no permanent treatment for Down syndrome because it is a condition that can only be managed. Children with Down syndrome can be managed from childhood, especially those with congenital illnesses such as hole in the heart. Medically, they can be treated through corrective surgery.

Children with Down syndrome should be exposed to formal education at a very tender age, even though we know that there is a limit to the extent to which individuals with the condition can learn. As they grow, they should be exposed to speech and language therapy. This is good at an early stage too.