Down syndrome is a congenital condition characterized by a distinctive pattern of physical characteristics and some limitation in intellectual abilities, social and practical skills. In this report, a former banking professional details her ordeal caring for her child born with the condition while highlighting the strategies she applied to gain support for the baby and others living with similar challenges. DEBORAH OCHENI reports
Having a child with special needs brings with it many typical child joys with parenting. However, parents with special needs cautioned that people shouldn’t fool themselves into thinking it’s safe for parents. In most cases parents are never prepared for the challenges associated with having a child with special needs and as a result are not able to cope with the situation initially but with trainings on activities to engage these children, their parents or caregiver tend to find caring for them rewarding and interesting. Tola Makinde, affectionately known as TM, is the founder of the Mo-Rainbow (Down Syndrome) Foundation. She is a banker turned advocate for children living with Down syndrome and a force to be reckoned with when it comes to caring for children with special needs. As the population of children with special needs continues to grow, more and more people find themselves working with these children. Many of these adults are volunteers who give generously of their time and expertise; others are highly skilled in their field, but have little or no knowledge of disabilities.
Leaving a banking job
Speaking to The New Telegraph, Makinde explained what inspired her decision to quit a well-paying banking job to care for children with Down syndrome. “I thought to myself that God was trying to change my career even though I loved working in banking. God in heaven must have said, ‘Hey girl, it’s time to move on to a bigger mission.’ “I happened to have my baby in 2011 and about five days later she was diagnosed with Down’s Syndrome. It was a brutal shock, so instead of picking up after my maternity leave, I sent in a letter of resignation after 11 years in the bank I was about to dance to a different kind of music: music that people don’t like to dance to, a school that people don’t like to go to – caring for a child with special needs.” It was a very difficult time in my life. Luckily I had prior knowledge and exposure to the condition and knew I would not be able to handle the responsibility as I had been given a bigger role to play at work.
“Fortunately, I had strong support from my husband. I had prayed for a baby girl and because no one prays for a child with genetic disorders, the answers to my prayers brought a blessing in disguise. I discovered the purpose and passion of my pain. My worst nightmare is over. My little bundle that first caused me pain has God’s purpose for my life wrapped up in that pain that has now turned into passion. “I couldn’t believe my career would end, but who am I to complain. It was a very difficult decision associated with sleepless nights, moments of racing heart because of the fear of the unknown. “I had to be brave and just sacrifice for my child even more so it hit me that I have to start running to make sure my daughter gets the whole procedure soon enough after coming to terms with the condition. I didn’t have to dwell on the denial stage too long because I knew the burden would come in different stages as my daughter grew. It was wise for me to accept and embrace my bundle of joy before looking at the diagnosis. Makinde sought help for her daughter because she had prior knowledge of early intervention. “I left the country to seek help for my daughter in the United States and came back with so many ideas on how to care for children with Down syndrome from an early age. I came back to find that many more children are being neglected and I imagined all the potential that would be wasted if they were not cared for. I had to lend my voice; I had to come out of my shell to save from other children of destiny. I see it as being on a rescue mission. “People don’t want anything to do with our children in society. It’s sad because they’ve missed a lot because children with Down syndrome have the same needs than all the other kids and they have a lot to give if you get close to them. I was supposed to be a rainbow in another kid’s sky. It was a tough decision for me, but because I compared the care here to that received abroad, I accepted the call and I am honored today because there has hope for our children and life after being diagnosed with Down syndrome.
Creation of several intervention centers
Speaking on the federal government’s involvement in caring for children with Down syndrome, Makinde highlighted the need to open more centers in rural areas with best practices in mind. “I believe that in the near future the government will present a plan. It’s an endless story. We need sustainability and capacity building. Caring for children with special needs is not a snack in terms of cost and attention. This is not a joke. “Parents are not as strong as they claim. It can be so frustrating, especially when there is no support whatsoever.
Don’t get me started because I’m very emotional right now. Parents need autonomy; we need more centers like ours in rural areas with best practices in mind. There’s so much to say, so for now I like to face my work. “What can I do with the help of other people and organizations to bring about change? Right now, I don’t see government intervention, maybe when the pigs fly.
However, I remain hopeful, I pray and I cross my fingers. She noted that lack of adequate funding, good policies, capacity building and government support are some of the problems her organization is going through. “The various challenges that NGOs face are funding, good policies, capacity building and government support. “I didn’t have any form of intervention when my child was a baby. In fact, people said I just had to wait and keep praying for God to heal her. I had seen in advanced countries the kind of care given to children with special needs especially from birth.
“Our niche at Mo Rainbow is early intervention, catching them young and providing them with all the support they need to lead normal lives. There’s so much they can learn if we start exposing them to meaningful games and activities early on. This is why I say we are on a rescue mission”.