ADETOLA MAKINDE is a caregiver, creative counsellor and founder, Moyinoluwa Rainbow Foundation, one of the few Down syndrome centers in Lagos. In this interview with FUNKE OSAE-BROWN, she shares her experience nursing her daughter, Moyinoluwa, into a cute ballerina against all odds and starting a foundation. Excerpts
Mo Rainbow Foundation
Moyinoluwa Rainbow Foundation also known as Mo-Rainbow Foundation is a grassroot organisation that focuses on supporting children born with Down syndrome from birth onwards. Our goal is to provide early learning interventions to children with Down syndrome so that they can live normal and less dependent lives as well as be a joy to their parents. We also aim to change the face of Down syndrome through advocacy and enlightenment campaigns and give hope to families who have just received a diagnosis and feel like doing away with the child. Basically, we are on a recuse mission as having a child with Down syndrome is seen as a taboo or spiritual attack in this part of the world where the society is plagued with so much ignorance. We believe that through creative programs and partnerships we can facilitate opportunities and experiences so that we can disperse the taboo, stereotype, myth and mystery about people with Down syndrome.
Mo-Rainbow Foundation was founded in 2014, while Mo-Rainbow Down syndrome Ability Centre was inaugurated in August 2015, as a matter of urgency as we discovered many children were being left alone or locked up at home from a very young age of 2years, kept in spiritual homes where they are made to fast (starvation) in the name of setting them free from demonic oppression, left to die, taken to villages to suffer for being different or poisoned. Also, I met a few children in my neighbourhood that needed therapy and I remembered how blessed I am to have had an exposure to getting expert care and training on how to support and care for my child from a very tender age. God wanted me to leave my comfort zone to give hope and spread the good news about the benefits of early intervention.
It’s a lot of work and can be tiring. I remember how I used to sleep very late helping her with therapy and still try to give required attention to others.
After I started my enlightenment campaign I felt the urge to stop home visitation which I did and before I knew what was happening, God provided a one room office apartment where we started to put all the messages I’ve been conveying to everyone into something more practical.
Our 4-room apartment is beautiful and it just makes me appreciate the beauty in starting small. I also have faith that soon God will do another miracle by giving us our own place and be able to help many more children.
We engage our children in a wide variety of programmes that will help them maintain a sense of well-being and achieve learning and independence. It’s too late to give up now because it’s all about our children getting help and becoming relevant in our world.
God has brought a few friends our way and we hope to have more friends that will stick to us through it all to keep this dream alive. It sometimes breaks my heart when we don’t get sponsorship for children, still we move on because we know God will do what He wants to do. All He looks at is your heart. I’m grateful to God I answered this call and He has been a great provider, sustainer and perfect way maker
We create an enabling environment for children born this way by rendering all forms of therapy as treatment, education, vocational, sports and other activities that will eventually give them a voice and make them relevant in future. We have about 12 children at the Centre and some are on the waiting list.
I had searched for an enabling environment for my child when she was 18months as I had commenced therapy for her from 2weeks old. I remained undaunted even when news came to me when she was a few days old saying that she might have need for a heart surgery. All the negatives things you could ever think of were dished to me as I sat face-to-face in the doctor’s office with my mum listening to all his negative vibes and instantly forgiving him (the doctor) for all he said 7days after she was born. After getting enough exposure on how to care for Mo, we returned home and I discovered not many people were ready to embrace my daughter’s condition. Some people had this look of “it’s not my portion” and they loved to stare. I would tell myself that she would be alright. Sometimes, it breaks my heart when people say stuff like: “don’t you want to have another girl that doesn’t have down syndrome”, “you were not careful when you got pregnant” “You need to ask God for mercy” and all that. People are just not aware of the condition. Some people call them snakes. I met a child once that needed intervention and that night at home, I felt a strong presence and a voice telling me my voice was needed out there to set people free from this ignorance that was sweeping away lives of children born this way. I wept like a baby and from then, I knew God was sending me out on a rescue mission. I couldn’t explain it. My husband thought I was out of my mind. God began to show me the big picture and how families will get to love, bond and nurture their once neglected children again. I was happy seeing this and I couldn’t hide or run away from the mission anymore. I thank God for my husband, friends and family. They have been my source of strength.
My Daughter’s Experience
The doctors could not have changed the condition because it’s genetic. I only thank God for using them to save her life because she had birth asphyxia. The news came to us and it was indeed a time of shock and confusion. For a moment, it seemed like the simple joys of parenting were farfetched as we gradually adjusted to the news. I had several nights of hallucinations and wished I would wake up from my dream. By the 2nd week I had to tell myself ‘I will make it, (even though I cried everyday behind closed doors), but my baby will be fine by God’s grace’. There were days I found it difficult to see her as beautiful because the pain and confusion was too much for me to deal with, all I saw was Down syndrome and I would tell myself, ‘No way, she’s the cutest, my princess, my world until those thoughts disappear’. I would hold her and cuddle her always, watch all her night and stare at her like I had never seen a baby before. I was going through a lot of emotional pain and my friend would say to me, it’s okay to cry but do all you have to do for her now and fast too. I quickly embraced it and started to do all could. Before she clocked one month, I had started to introduce some gentle purposeful massages. I was more determined than ever before each time I remembered the negative reports we were dished with. The doctors really cannot tell how far a child born with any disability can go. They have been trained to talk about the worst scenarios and no one can blame them for that. It’s all in the hands of God. Nobody prays to have challenges how much more a child with any form of additional need. Once a baby is born into this world, he or she needs care, a baby is a person before a diagnosis and so in all fairness, should not be seen as a diagnosis. I thank God that today, she is a role model and fast becoming a self-advocate. I want other children to enjoy having an extra chromosome and be relevant in their own space and time. We have been through a lot together and I see beautiful years ahead for her and all the children under my care.
It was a hard time for me but I handled the stigma well because I knew people were simply ignorant. Some days, I prayed I would wake up from my dream, I wished the features away but ironically, the features are more like the hallmark appearance unique to Down syndrome. I lived in fear of the unknown because I knew there was little or no acceptance of the condition in this part of the world. It was a tough time for me. I felt like the whole world had crumbled on me. I developed high blood pressure. She was diagnosed with heart defects and that meant surgery. It was a very turbulent period for my family and I; I faced it with all I had, took the bull by the horn and keyed into early intervention with God on my side. I started physical therapy when she was 2weeks old and intensified as the months rolled by even with the heart condition which subjected us to frequent visits to the hospital for oxygen and nebulization. The most important thing during this period was that God gave me the grace to face it, my husband and immediate family were there for me and I had a few friends I could cry to.
Today, she is fast becoming a ballerina, she loves pretend play to a fault and I always leave whatever work I’m doing to watch her dress her baby doll up, from wearing of diaper, brushing of teeth, combing of hair, plaiting two strand twist, to clothing and accessories. She is a fighter and a great helper.
Caring for the Children
It’s very broad, but I wish to mention that in all of it, play therapy to me is an integral part of the whole process. The extra chromosome children with Down syndrome are born with predisposes them to heart defects, some physical features, milestone developmental delays, and hypotonia (low tone muscles) which is part of what affects their physical features most especially oral cavity. Sometimes they find it difficult to express themselves or even communicate. We take them through oral exercises, to help them produce sounds, tone their oral muscles and develop their oral motor skills. Language acquisition, speech therapy, physical therapy, learning support (education), and independent living: which is also very broad and entails a lot of activities and exercises, potty-training, sports and a whole lot more. The beautiful thing about these processes (though cumbersome) we take them through is that they respond with time if consistent. Irrespective of the milestone developmental delays often experienced, we don’t stop therapy as that is the only treatment for Down syndrome that I know.
Times are changing and we strongly believe that one cannot go wrong with early support and intervention because being proactive from birth onwards reduces future stress of managing Down’s syndrome later in life even though we know it’s a lifelong condition, our children can do exploits and defy all odds. In the past, it was believed that there were many things that people with Down syndrome could not do, when in fact they had never been taught or given the opportunity to try. Parents should seek help early and not live in denial for too long because in the end, the children are the ones that would suffer, the ones that would be bullied and also the ones that need intervention. There so much we can do at Mo-Rainbow so we encourage parents to be actively involved in the care of their children, giving back to back support as they are their children’s first and best advocate. As a parent, it’s important to see your child as a precious gift from God first before the diagnosis. You also have to believe in that child and support the child with all you can (give the child all the best you can). It won’t be long before you realize they are a wonderful additional to the family. Sometimes I get overwhelmed and instead of me to get weighed down, I think of make shift ideas or other ways of getting a puzzle fixed. I just realize that things fall into shape gradually and I get a little bit of respite from time to time. As a parent, early intervention should come to mind first after all medical assessments have been done. We often share tips with parents and some of our programmes are in form of workshops for parents and caregivers. We also encourage parents to advocate for their child, ask questions and go to the right sources for help. Thankfully, google is there to help. We support those that are far away from us through telephone training and counselling.
At MRF, we encourage effective healthcare, good parenting skills, everyday family activities, early intervention and support especially from birth; this helps to aid development. Likewise, in supporting development, good primary education, various therapies, improved fine and gross motor skills, toilet training, behavioural, etiquette, recreational, vocational trainings and community activities are required.
This is why we do not focus on only the children living with Down’s syndrome alone, but we also involve the parents and other family members our children belong to into our curricular. The drive of this, is to equip parents and family members with skills and abilities to support their loved ones as they are the first advocate for these children in our society.
Advice To Parents with Down syndrome Children
Embrace it, nurture and provide for the child like you will naturally do for your other children. Don’t give up hope. You will never know the skills your child can acquire until you create that enabling environment needed for the child to explore and thrive. Get family to support you and not pity you as it may be overwhelming at times. The skills your child will eventually acquire will depend on the life experience, support, exposure as well as the child’s innate abilities. So why neglect or keep your child away from getting help? When you as a parent stand up for your child and get help early, it will eventually pay off in the long run. If a parent doesn’t show any interest in giving their child a voice, no magic should be expected. As the saying goes, Charity begins from home.