Nimmy at 5 inspiring story inspite of cerebral palsy
Today Saturday December 16, my daughter Oluwalonimi is five years old; she has come a long way and indeed, I am grateful.
My name is Bukola Ayinde, and my daughter has cerebral palsy. It is a disorder of movement, muscle tone or posture that is caused by damage that occurs to the immature developing brain, most often before birth (but it could also be during birth or after birth).
Nimmy weighed 1.2kg at birth and she was born premature at 31 weeks. She had to be placed in an incubator for six weeks. She was doing well until she had an apneic episode, which is a disorder that causes one to stop breathing briefly. Thereby she suffered loss of oxygen to the brain.
Even with all the drama, my daughter blossomed after a few months and I thought the worst was behind us. At four months, she was behind in her development milestones; she could not hold her head up. The doctor told me not to worry but to be patient. Eventually at eight months she was diagnosed for the first time of having cerebral palsy. My whole world came crashing. Most mums have big dreams of what they want their children to become; I was no exception.
Nimmy’s Diagnosis
A few months down the line, Oluwalonimi (fondly called Nimmy) had her first neuro assessment by one of the best Neurologist in the country and she was graded as a stage 5 (when 1 is least affected by cerebral palsy and 5 is most affected). My husband and I were told she would not be able to do a lot of things. We took our beautiful daughter home knowing we will love her no matter what.
However, I thank God for the people that came our way. Our first professional care therapist (Ms. Ijagbemi) asked us to look for a school that Nimmy could attend. She promised to provide care givers that would stay with Nimmy in school. Yes, some schools rejected her but I finally asked around (from other mums who had children with special needs) and I got a school that accepted her, so I appreciate Mrs. Okereke for the warm welcome Nimmy received in her school.
Even though Nimmy could not talk for a long time and we were not sure she was learning anything, we kept her in school with her peers.
A big thank you to all the speech therapists that worked tirelessly, the occupational therapists, the physiotherapists and our beloved care givers….thank you for believing in our dream that Nimmy could learn.
Experience with Therapist
When Nimmy was abused by one of her Physiotherapist, I was distraught, angry and scared. I was scared because there was a possibility that the lady may have caused more damage to her brain. [Read: Heartbreaking video of therapist abusing a child]
I withdrew her from school and was through with mainstream schooling and determined to home school her myself. So I asked some of my friends who had children in Nimmy’s age grade what their children were learning in school. I took some of her old IEP (Individualized Education Plan) and wrote my own plan and I started home schooling. Thank you, Aunty Julie (Nimmy’s lesson teacher), for the tireless teaching of alphabet sounds and numbers.
Then Tobiloba Ajayi, #letCpKidsLearnProject’ came into our lives and encouraged us not to allow one ugly incident keep Nimmy away from school. Although I was scared, I decided to give it another try. This time I looked for a smaller school that could meet our needs. Thank you Mrs. Funmi Ngwube and Ms. Becky for believing in Nimmy. Thank you, Ms. Rita, for your commitment to Nimmy learning.
Today, as a Nursery one student, Nimmy can identify all the 26 letters of the alphabets and sounds; she can associate them with objects. She knows her colours, animals and things. She can count more than 1 to 50 and also count backwards up to 10. She understands what addition and subtraction is as well as even and odd numbers. Lately, she is learning her multiplication table in 2s. All these she does even though her voice is not so clear; even though she is fully dependent.
Daily I pray for my daughter knowing that she will meet her other milestones very soon by the manifold grace of God.
A Child Not A Label
I have learnt to see my daughter first as a child and not a label and to focus on her strength and not her shortcomings. Once her teacher wasn’t giving her homework regularly because according to her since she couldn’t use her hands effectively, according to her there was no point. I encouraged her teacher to focus on the mental process of getting the homework done and not just the physical process. Even though her care giver would hold her hand to write the assignment there is still a mental process of accomplishing the assignment. Come to think of it, how many people write in longhand today, most people type on computer keyboards.
It has been five years of learning and re-learning. Five years of healing and forgiving. It has not been easy but God has been faithful. I have learnt to be happy in spite of my challenges because I realized that happiness is a decision for each of us to make. I take baby steps even when I feel tired of everything. I have learnt to trust God at the darkest moments and allowed God to birth a ministry out of my pain. To reach out to other mothers who need encouragement and a shoulder to lean on.
The Truth About Neurodevelopmental disorders
Mums who have children developing normally often say they do not know what to say to children (or their parents) who have disability. Some say they feel awkward being around children with disabilities. My simply answer is, ‘just say hi with a smile.’
Be nice to children (and their parents) who have disability, let us not demonise them as our society has done for many generations. Neurodevelopmental disorder is a medical condition and it is not contagious. If you feel burdened, pray for them. If you want to go the extra mile, learn about the disability and educate others.
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To the mum who has a child living with a medical condition or a disability and you feel your life doesn’t make sense anymore. It’s ok to cry but encourage yourself in the Lord for there lies your hope. Take tiny steps, ask God for daily grace and strength to carry on. He will come through for you just like He did for me.
Written by Bukola Ayinde
www.diaryofaspecialneedsmum.org
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