My Mo and I – Tola’s Down Syndrome Story

My Mo and I Tola's Story

I am honoured to interview a lady I have a lot of respect for.

Tola had read some of the stories of the wonderful mums raising children with additional needs featured on the blog and has been an ardent blog follower since then. She has become one of the wonderful relationships this blog has accorded me.

Tola is mum to 2 boys and a beautiful princess Mo, who was born with an extra chromosome. Read about how Mo’s birth has motivated Tola into starting a foundation for children with down syndrome especially those born into less privileged homes and how she’s helping Mo blossom and break boundaries.

Lets meet Tola;

Tola Makinde

My name is Tola Makinde, you can call me TM although some people I’ve known for over 4 decades call me Sola.

Early Life

I am from Ikare Akoko in Ondo state and the first child of my parents. I started my education with Stee international School, (popularly known as Subuola nursery and primary school as far back as 1978). I attended FGGC Bida for a while before crossing over to Federal Government Girls College Shagamu, in Ogun State and later obtained a BSc in Business Management from the most peaceful university in the caliphate city of Sokoto, Usman Danfodio University. 

I am an advocate for persons living with Down syndrome and other intellectual or learning differences; bridging the gap between children with special needs, their families and community.  I describe myself as a caregiver, a creative thinker, counsellor, an early intervention enthusiast, a developmental interventionist for children born this way. I love playing and helping children realize their superpower. 

Deeply concerned about my daughter’s development, I gave up my 11 years career as a seasoned banker and continued my small scale self-employment before making a lifelong decision of devoting my time and energy to ensuring that children living with Down Syndrome and their families are encouraged so that they never feel alone on the journey. 

Some of my friends think I’m funny but I think I just love to be light-hearted and happy.  I am free spirited, unapologetic about it and love to be myself.  Trust me, I’m still practising how to be calm by sitting (not standing) to watch a movie or two.  In my secondary school days, I participated in sports and I represented my school in high jump and javelin.

Mummy and Mo
You mentioned your daughter in your introduction, was your pregnancy with her different from that of your older children?

Her pregnancy was smooth except for one or two bouts of malaria compared to my other pregnancies.  Nothing in pregnancy suggested that she would be a special child.  Also, no prenatal test was carried out to check for genetic abnormalities.  The Chronic villus sampling test (CVS), a prenatal test or the Amniocentesis (Amniotic Fluid Test..ATF) is a test that’s rarely done in Nigeria to detect birth defects.

How did you discover she had a special condition?

Five days after my daughter was born, the doctors confirmed a diagnosis of Down syndrome.  It was a rude shock!  I was in denial initially and didn’t want to believe it as I had prior knowledge about Down syndrome and its lifelong challenges, most of which can be addressed with the right intervention. I thought about the reality, the pain, sacrifices, the trauma and the society plagued with ignorance. 

How did you and your family react to the diagnosis?

It was a rude shock as mentioned earlier, for a couple of weeks or months, it felt like the world had crumbled on me. The shame, rejection. I asked so many questions but didn’t get answers. It shook my faith in God. Why would God give me such a child?

I felt I didn’t deserve to have a child like that.  I was angry and sad and was trying to check if I had failed God in any way.  The good part is I didn’t have to live in denial for so long.  It was very hard to recover from the shock but I moved on shortly after.

What Obstacles did you face after delivery?

I didn’t see my baby 24 hours after delivery.  Her delivery was different from my previous ones.  There was so much silence during her delivery and the doctors and nurses wore long faces.  She has birth asphyxia, a condition where babies do not cry after delivery.  I immediately knew there was a problem.

Five days after she was born, the doctors confirmed a diagnosis of Down syndrome. 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. It felt like the whole world had crumbled on me. She was diagnosed with heart defects and that meant surgery. It was a very turbulent period for my family.

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.   

How did you overcome the obstacle?

It was the beginning of a long-life journey.  Those obstacles came in different measures and for a moment I felt there would never be an end to all the challenges.   The roller coaster emotional ride began.  Not enough tears could change the diagnosis.  I would cry with my mom daily.  It was from one sad news to another back then. 

Like I said earlier, there were frequent unplanned trips to the hospital to give her oxygen, monitor her breathing, nebulise her and 6 months later after a 2nd echocardiogram was carried out, it revealed her tender heart had a defect.  How does one overcome such? Another phase of worrying, stress and hopelessness overwhelmed me. 

My friend in the United States helped me through the initial stage. I started engaging Mo in various oral motor, physical and occupational therapy. I did not let the scary reports I read about Down syndrome get to me. My husband and family were very supportive.  All these helped me to overcome all the challenges and kept me focused and busy even before she was finally diagnosed with a heart condition at six months old.

What have you found to enjoy about having a child with additional needs?

I never knew I would one day make use of my specially gifted creative ability.  I probably made use of it 30% as a banker.  Having Mo in my life was the game changer for me.  It has unveiled the other me, wits and all. 

I discovered I could think creatively and put to good use ideas that often drop in my heart, even when I began to work with her as a baby.  She got my attention big time.  We spent hours and hours together.   She has taught me to never give up on my dreams, build resilience and be happy irrespective of what people do to me.  She came to my life to teach me how to be patient in life much more than I thought I knew.  The short of it is that I am a blessed woman who has been able to turn her mess into a message and found her purpose from pain.

MO, mum and her brothers

How do her siblings relate with her?

They are super awesome.  They have learnt to understand her and of course been a great support system for her.  I began educating them a few years after she was born.  They love her irrespective and it’s funny how I watch them feel frustrated and the next minute, I hear words like, “ I love you, I forgive you”.  It shows that they will find it easy to love and forgive and that, of course, is hard for so many of us.

How do people relate with her

At first as a baby, she was so flexible and small for her age and not many people wanted to carry her.  In public places, on some occasion, people have had to relocate their seats away from us. 

She is a happy child and loves to make friends so only a sadist would run away from her.  I guess awareness has helped a lot though I have once been told to try and have another child that is normal.  That was ignorance at play.

What are your greatest worries for her in the future

Well, I can’t say I have so much to worry about because her future is in Gods hands.  We have supported her from the day she was born, and we have a strong belief in the fact that she will achieve her dreams. 

People with Down syndrome need to be given a chance at life and they have dreams and aspirations.  They want you and I to believe in them and expect the best from them.  Her future is bright, very bright and in her maker’s hands.

Mo loves music and loves to play the piano
Can you share some of your happiest moments in raising Mo

I have so many happy moments to share.  She is very caring. She got introduced to dancing ballet at age 4.  I have tried all sorts of makeshift ideas to enhance her development.  I do not look at her health issues or inability, I just keep pushing her with the right support and exposure.  She made me proud when she first had a solo ballet presentation at age 5 during the Angels unforgotten Gala night in South Texas. 

Mo loves writing, in fact, she can’t do without holding a pencil and paper in a day.  She also loves making friends and plays the mother role when she is with her friends. She developed a love for ballet and had her first performance in March at Golden Tulip during a charity ball organized by Buzopat and her second performance was in the USA, San Antonio during the Angels Unforgotten Africa’s 1st Gala night for Down Syndrome.  These are a few of my happy moments. Just watching her breaking barriers makes me glad.

What struggles does she have as a result of her condition?

There are other co-existing challenges, but we focus on her strengths and abilities.  With continuous support at the centre where she attends and at home; because all hands are on deck, I am sure she will keep winning; those struggles have an expiry date.  All I can say is she is a fighter.  She never gives hope.  She loves victory.

Mo's down syndrome story
Mo ready for her favourite sport- basket ball

What do you hope parents can take away from your story in raising her?

Early intervention has helped us grow.  God has been my strength through it all.  We are not 100% but we started early.  It could have been worse, but it gets better by the day.  Parents should not focus on those milestones that are being delayed. My daughter sat at 9 months, walked around 18 months.  Wore braces from 13months and used other adaptive devices to help her gait and balance until she was 4years. 

There would always be make shift options.  It’s better to be doing something about it than just watching.  People said I was too worried, but they didn’t understand I was just supporting her to achieve success.  We must first try because giving up is never an option.

What progress have you seen in her since her diagnosis?

Too numerous to mention and I thank the Lord, my family (home and abroad), friends and her teachers.

What treatments/therapies have been successful

Virtually all forms of treatment and therapies she has been exposed to have worked. All that being said, she is still a work in progress. Aren’t we all? Continuous support and various interventions that enhance independence, skill acquisition, play, extracurricular and education have all been an integral part of her development.  We do regular checks at the hospital too.  Most importantly, God has kept my beautiful heart warrior.

Mo at a ballet performance

How did she get into ballet?

At age 4, I noticed she would always want to hold my hands and prompt me to dance.  She loved watching salsa dance and so I encouraged her.  I would always dance with her and one day I introduced her to a ballet instructor and she started classes.  

Her smile and excitement on her face speak volumes when she watches performances on TV.  I once decoded it as ‘’ how can you help me dance like this mum, I love it’.  Without wasting time that day, I started dancing with her and got her a home ballet instructor.  Before the 4th rehearsal, she was able to do a presentation in Nigeria with her brothers, then she had a performance at the Golden Tulip hotel at Buzopats Charity ball and a solo in San Antonio.   Now she does it effortlessly and we hope to see her get to the top with it.

Can you tell us about your foundation?

I founded Moyinoluwa rainbow foundation a.k.a Mo-rainbow in 2014. My vision was to have a direct impact on children, families and the community as I journeyed through life with My daughter Mo.  We are a government approved special Education and vocational centre.

Our goal is to provide early learning interventions to children so that they can live normal and less dependent lives as well as be a joy to their parents.  We have established MRF to enable us put a face to 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 rescue mission as having a child with Down syndrome is seen as a taboo or spiritual attack.

The Centre

A centre was inaugurated in 2015 as a matter of urgency as we discovered many children are being locked up at home from a very young age of 2years old, kept in spiritual homes where some are starved in the name of setting them free from demonic oppression, left to die, taken to villages to suffer for being different or poisoned.

We create an enabling environment for children born this way using play, Extra- curricular activities (Music, sports, Dance , Modelling, gardening and other activities that will eventually give them a voice and make them relevant in future.

The name Mo is Moyin’s nickname and the Rainbow was a name God gave me when my heart was so troubled from not being bold and ready to answer the call to be on this rescue mission.  We had put in another name and followed up with CAC to conclude the search but the name was not approved and the whole process was more than 3 months.  One very cold winter morning, before day break, I woke up to use the bathroom and I heard a voice saying” look up, what do you see in the sky”? While I was still trying to think, I heard the answer “Rainbow”.  I was transfixed and immediately sent a text to my lawyer and in 2weeks, the name Moyinoluwa Rainbow Foundation was released and approved.  The rainbow signifies hope and the promise of God after the flood that destroyed the earth. 

Starting the centre

The inspiration behind Mo Rainbow began after my initial frustration of not getting help with early intervention. God gave me this vision one day in my living room after Moyin clocked 3 and I could only look back and appreciate God even more as we had moved from struggles (with feeding, crawling, standing, walking, talking, heart surgery) to success as I have an endless list of what she is able to do with God’s help and unrelenting efforts, never say never attitude and of course non-stop therapy.

The foundation helps with identifying every child’s strength through individual programs tailored according to each learner’s needs.  We discover many talents and help the children develop them, acquire skills and independent living. 

The foundation has set out to support children and young adults, train parents and empower those from low income earning families.  We have survived through donations by individuals and corporate bodies and we provide special education needs using a multidisciplinary approach and one on one sessions to help a child make the necessary progress

Advise to families of recently diagnosed special needs children?

Parents need to embrace, nurture and provide for their child like they will naturally do for their child without additional needs. I know it’s hard for parents to cope sometimes especially with the cost of care and delayed milestones, but trust me, you need to see the face of beauty in your child, show love and give equal opportunity. Learn, relearn and unlearn especially outdated information and myths about your child’s condition.

Many parents give up on their child, see it like they are wasting their time and resources and sometimes wish the child away or dead. Its heart wrenching for me to see parents neglect their children, or fathers walk away from their homes, calling their wives or their children names. If a parent doesn’t show any interest in giving their child a voice or being their advocate and microphone, no magic should be expected. My daughter lights up our world, life would have been boring without her. There is hope after a Down syndrome diagnosis and every child is a blessing.

Tola's down syndrome story

Finally, I would like to say to parents ‘’hold your horses, find a support group around you, be the voice for your sons and daughters better still be their microphone.  Do all you can to start early, sacrifice and do all you can to support your child. Now is the time. You will see how they begin to thrive, become stronger and find their voices because you gave them hope, support and encouragement.   Desist from passing the buck.   Don’t be in a haste, celebrate your child and the world will help you do same. Sometimes we want things the right way…hell no! it’s a process.  Even when there are no grains in the barn…when it doesn’t look like things are happening, God is working, grapes will come to the vine.

Editors Note.

If you’re someone who’s been looking for ways to give back, the Morainbow foundation is a good place to start. I’ll do another post on the foundation and the incredible work Tola and her team are doing soon.

No child deserves to be locked in prayer rooms sometimes leading to death, no child deserves to be mocked and called names because they were born with additional needs. Do what you can to raise awareness and educate people about special needs. Every child deserves love, acceptance and for their voice to be heard.

Above all, let’s be supportive and kind to each other, you never know what another person is going through. Be kind.

Aunty Lulu

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Omolara Obanla Akintelu
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Omolara Obanla Akintelu

God bless you Tola, He who began the good work in MO Will be faithful to complete it in Jesus name.

Tola
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Thanks so much Omolara. Amen to your prayers