The Executive Director of Morainbow Down Syndrome Foundation and President of Save Down Syndrome Inc., Adetola Makinde, speaks with LARA ADEJORO on the challenges and benefits of raising children with Down Syndrome
March 21 is marked as World Down Syndrome Day. What is the significance of the day?
The day is filled with joyful celebrations of people with Down syndrome. This year, we are raising awareness and campaigning for the right to legal capacity, supported decision-making, and easy-to-understand communication for people with Down syndrome all over the world. Legal capacity means that persons with Down syndrome have equal and basic human rights. It is also a day to campaign for the rights of supported decision-making in the sense that people with down syndrome should be part of policy designing, and be a part of decision-making that affects them directly, and their future goals.
They should also have better access to health facilities, access to free health checks, and access to activities that can promote and improve their quality of life, especially as they grow into adulthood. Also, people with Down Syndrome must be communicated to in a way they will understand. We need to understand each person’s receptive skills and the way they learn and process information. It is important for the community and the government to be a part of projects for people with Down Syndrome on the promotion of early intervention, to ensure their needs are met while eliminating discrimination against affected individuals.
In general, what is Down Syndrome and how does it occur?
Down Syndrome is a presence of a whole or part of a chromosome that attaches itself to another pair of chromosomes causing an extra chromosome to occur in some or all of the cells of someone with the diagnosis. The hallmark of Down Syndrome is hypotonia, which is low-tone muscle. As a result of the presence of this extra chromosome, they have 47 chromosomes instead of 46, causing Down Syndrome to occur. These chromosomes are genetic materials that carry an essential part that determines a child’s characteristics, but some of those extra chromosomes exist in all or some of their cells. Persons born with Down Syndrome will have characteristics of Down Syndrome and still have some features from either their mother or father because Down Syndrome is only a part of who they are.
We have trisomy 21 or nondisjunction, translocation, and mosaic Down Syndrome. Importantly, the features of Down Syndrome are unique and at least five out of about 50 of these features will occur in a person with Down Syndrome. This does not mean that everybody with Down Syndrome is the same, some people with Down Syndrome will have different needs.
What misconceptions does society have about people with Down syndrome?
Many years ago, society do call people with Down Syndrome derogatory names like mongoloids, morons, snakes, and imbeciles, but things have switched up in the last couple of years and a lot is changing for the better for people with Down Syndrome. Society believes that people with Down Syndrome have small brains, and they can never learn; the size or shape of the head of someone with Down Syndrome might be a little smaller than normal in some circumstances but it doesn’t mean that because the shape of the head is small, they have a small brain. The brain is elastic, and we have been told that the brain will develop when we keep learning. It is believed that people with Down Syndrome cannot go to school or learn a new skill, but it is a misconception because I have seen amazing works people with Down Syndrome have done and can do, and it starts with being empowered and allowing them to try. It is believed that people with Down syndrome are unintelligent and may never learn, but you have to repeat instructions for them to learn. It takes a lot of patience, and repetition for someone with Down Syndrome to be able to learn a skill.
Another myth about Down Syndrome is that they have large tongues, but the fact about this is that they have smaller jaws or smaller oral cavities to keep their tongues intact, so most of them protrude their tongues. People say because they have large tongues, they may not be able to speak, but that is not true. The only reason they may not be able to speak is because of hypotonia. Physical exercises or therapy can help tone the muscles. These misconceptions have made people have low expectations of people with Down Syndrome, our society does not believe that they can amount to anything.
What roles can society play in helping people with Down Syndrome?
Society needs to understand the use of language and understand that people with Down syndrome are human beings with unique abilities and that they can dream and achieve their goals if they are supported. They need people that can support them, help them thrive, look beyond their disabilities and give them a chance to live and be a part of the decision-making process. Society gets people frustrated and makes families hide their children with Down Syndrome. No one prays for it, but it happens. Society plays a vital role in allowing people with Down Syndrome to live their lives or just live in sorrow for the rest of their lives.
What steps can parents take to help Down Syndrome reach a level of independence?
First, parents have to be very patient, sometimes they need to grieve because it is real and can be shocking. Some people may not come out of the denial stage. You will meet some parents and they will say that even at three years old, their children do not have Down Syndrome. They refuse to see it and that is living in denial. That is okay but not okay for the child. Parents need time to embrace it so that they can grow to love their children irrespective. My candid opinion is that parents must wake up and see the opportunities and potential in their children. There is also a need for early intervention and this means that any child diagnosed can begin to experience care and be supported to achieve milestone development that has been delayed. They can begin to look for support groups they can join and begin to be involved in the lives of their beautiful child. They should believe in their child even though it may be hard at the beginning. Encouraging the child is another way to move on after you have accepted that your child has Down Syndrome and is unique.
What challenges do families and caretakers face in raising a child with Down Syndrome, especially in our society?
They face a lot of stigma and funding issues because taking care of children with disabilities can be very expensive. Sometimes, you feel it is only for the rich because going for therapy costs a lot and you have to think of how to afford it for the most part. This tells on the pocket, the financial implications have a lot of impact on the parents who have children with Down Syndrome and other kids to carter for. It can be draining because they face challenges even from immediate or extended family members. The worst is rejection by society, and exclusion from activities, schools, and religious institutions. Some parents resort to prayer homes and go to the wrong sources for help.
Even schools say they can help the child. Meanwhile, they put the child at the back of the classroom or separate the child from others not allowing the child to explore or move around because the child may not want to sit in a spot. Parents should be careful who they leave their children with to prevent abuse or mistreatment. A child needs to learn from his or her environment.
Parents and caregivers face a lot of challenges in helping their children thrive and that is why they prefer to take their children to special schools if they have the funds.
How do you think poverty compounds these challenges and what are the ways forward?
If we don’t have money to take care of our children with Down Syndrome, it becomes an issue and it is going to increase the mortality rate because more children with Down Syndrome will die from not being able to get medications to preserve their hearts. 50 per cent of children with Down Syndrome will need heart surgery or have heart disease. Poverty is going to impact that family, not having a successful heart surgery which could be avoided like post-surgery infections, and lack of medical interventions can compound the problems. How many people can access private hospitals? When you get to government hospitals sometimes, they will not have oxygen and the child may need oxygen while on admission. There is a need for organisations that can support causes like this, we need multinational organisations that support causes like this, to rally around children with Down Syndrome that need surgeries, and health interventions because we don’t have free health checks.
We need to ensure that children with Down Syndrome are considered in health and education settings when planning, maybe having special units for them. Medical professionals will know the kind of medical interventions they may need. All these can be addressed if there is funding because not everyone will be able to afford this.
Can children with Down Syndrome attend regular schools?
They can attend regular schools but it depends on the setting; if the school can provide reasonable accommodations for learners with Down Syndrome and if the school can understand their learning profile, the way they learn, what will prevent them from learning, and why they may not be able to learn. But the child should get a one-on-one intervention. This will help to identify the child’s capacity to process information and make progress. We should expose them to different learning environments because a child with Down Syndrome is multitalented.
What is the hope for people with Down Syndrome?
There is hope for them. They are fighting for their voices to be heard and we are bringing them to the front burner every day through various ongoing projects at my foundation. We don’t want parents to live in denial, parents must seek help as soon as the child is born and we want to normalise having a child with Down Syndrome.