Beyond My Limitations…Jimmy Asuni

 

 A brief history of your life till date

My name is Olaolu Jimmy Asuni. I was born in Yaba, Lagos, Nigeria. My mother was a school proprietress, principal and a teacher at heart. My father was an accountant. I have three younger siblings, who are all great and wonderful. 

I was born with a condition called cerebral palsy. This affected my speech (the way I talked) and my fine motor skills (small movements such as picking up small things and holding a spoon. To do this function, I would require the small muscles of the fingers, toes, wrists, lips, and tongue). It made my developmental progress slower than I believe it would otherwise have been. However, it did not stop me from achieving my goals in life.

I remember my first day at primary school; I cried because children were calling me names. The first day at secondary school was the same; it was tough. I knew I had to block out the negative things people said about me and find a way to be happy and guard my heart otherwise, I stood no chance in life. 

My parents, and particularly my late father, helped me a lot. He didn’t treat me like a child with a disability rather he brought me up like a child who could achieve whatever he wanted to.

When I was much younger, rehabilitation therapy wasn’t readily accessible in Nigeria but my father ensured that I had access to privately-funded speech and physiotherapists to support my developmental progress. When I turned fifteen, I lost my dad, and this was tough on all of us. He was my rock, he taught me everything I knew and repeatedly said to me, “Never give up on what you want.”  This saying kept me going through very many challenging times in my life.

When did you notice that you were different from other kids?

While growing up, I was not given any special treatment. I was given the same treatment and upbringing like my siblings.  If I did something wrong, I got punished.

I would never forget the day I found out that I was different from others. I think I was just around eight years old. It was a sunny day and we travelled from Lagos to Ibadan, which is another vibrant city in Nigeria, to visit my uncle.   On that fateful day, there was a football match between both cities- the Lagos boys (consisting of myself, my junior brother and my cousin) versus the Ibadan boys. I can’t really remember what the scores were, but I believe my team won. As we played, my Aunty Ninon recorded the event with a video camera. Afterwards, I watched what was recorded. As I watched the video recording, I noticed that I was different from everyone else. From the way I stood, the way I moved and ran I was like a sore thumb; I stood out from the other boys. I realised that the way I spoke sounded different from other kids in the video. That, was a defining moment in my life. Up until then, I did not know I was different from anyone else. 

Were you ever jealous of your siblings or friends?

Jealousy is bound to happen at some point in everyone’s life. You get jealous of friends who you think have better toys than you or have all the girls or can get the girls just by talking to them, so it was bound to happen, but I thank God for my mother.  She always told me to be content with all I have. She constantly repeated that to me as a child, so I grew up with that in mind. Anytime I felt a sense of jealousy crippling in and it did a few times, I remembered my mother’s words telling me to be content. I guess that is one of the best advice you can give to anyone who has issues with jealousy. Always be content with what you have. This doesn’t stop you from dreaming and working hard, thinking smart and acting smart.

Growing up with CP, what was your biggest challenge?

I had many challenges, but I guess the one that stood out for me, was finishing my degree in Business Management. It took a lot out of me to finish that degree. It was not easy to meet tight deadlines for essays as well as to prepare for exams at the same time. I found it a bit difficult but I had excellent lecturers, who also contributed to my success.

I can still remember my graduation day when my name was called out, the sense of achievement overwhelmed me and my thoughts screamed ‘Yes!! I made it!’

Currently, you work in a Bank, and you run a cause for children living with disabilities in Nigeria and London. How do you combine these roles?

I work with Lloyds Banking Group in the UK as a project assistant; I enjoy what I do with the bank. As a project assistant I am involved in a lot of activities that enables the project run smoothly. It was difficult at first and it took me a while to understand the processes. I still find it a bit difficult to understand some of the processes but I have a very understanding team leader. She takes her time to explain things to me. I am very grateful for the support.

Asides from my bank work, I created a niche for myself in disability advocacy and public speaking. I visit different colleges and different disabled homes giving speeches and encouraging people who have disabilities and those without, on maximising their potential.

I have also given talks in Warri, Nigeria, in small disabled homes. I love to motivate others by telling them about some of my life experiences and how I overcame my challenges. At the end of my speech, I usually end with this statement, ‘Never judge a book by its cover, read the content of the book, in every disability, lies an ability.’ 

Can you talk a little about your projects for special needs children?

I am currently working on a project for people with disability in the UK.  I have given speeches in charities such as Action for kids, Scope, Mencap, and Lewisham disability collations. I believe people with disability are not given enough opportunities to show what they can achieve. Hence my reason to be a disability advocate.

I joined various initiatives to make sure that people with disability are not just seen but heard. I am working on a few things for people with disability, which I think will throw more light on the topic.

What is your advice for mothers with children with disabilities?

Never treat them differently from the rest. Always be kind and make a conscious effort to understand them, be firm with them but don’t be harsh. Above all, always show and give them love. Love will help them grow.

 

A Mother’s Love and Her Daughter’s Strength

My name is Margaret, I am Yewande’s mum. My daughter was born 27 weeks old. Eleven weeks premature. The hospital did not discover immediately that there was anything wrong with her. The first thing that I noticed was that her legs were stiff after six weeks when we left the hospital.
The Neonatal consultant called me and asked me to come over to the hospital. When I got there, he told me that my daughter had a brain hemorrhage and she might not be able to see or walk. I was distraught; I was completely devastated. She was my first and only child.

The Neonatal doctor asked me to take my daughter to my community service provider where a physiotherapist would be appointed to conduct therapy sessions with her.
I was in shock; I kept crying for days. Then the numerous hospital appointments began, from one medical office to the other. It was tiring and emotional draining.
I was broken and I wanted to know why this could happen to my baby. I cried a lot; I stopped going to church, I stopped believing.
At a point I tried so many things; different therapies. We went from England to The United States to Poland and Hungary looking for solution to my daughter’s medical condition.

Then after a while I realized I had to go back to God. I learnt to trust him again, I learnt to submit to his will. Through the years, my hope in Christ gave me the courage to go on. Yes, it was not easy. I learnt to take it one day at a time. My daughter is a college graduate today and I am proud of what she has achieved. I often encourage her to have hope for a great life in spite of her disability. I tell her stories of people with challenges who lived their dreams.
My admonition to other mothers:
It is not an easy journey but don’t give up. I realized that no matter the kind of therapy we did, there was no magic cure, everything we achieved came through consistency. You must be ready to stick to therapy consistently to see any form of improvement.

Yewande’s story
My name is Yewande Omoniyi, I am 26 years old. I am a graduate who is currently volunteering with a Disabled people’s organisation in the UK. I was born prematurely, 11 weeks early. I experienced lack of oxygen to my brain during birth. This caused my Cerebral Palsy. (CP)
CP is a condition that affects muscle control and movement that is caused by a brain injury. The injury occurs before birth, during birth, or after birth. There are 3 types of CP, and even if two people have the same type of CP it will affect them in different ways. Some people have more than one type of CP. CP can also affect speech, motor skills, sight, and hearing. People with CP can also have conditions like epilepsy, and experience behavioural problems or learning difficulties.

I first realised I was a Disabled person at the age of around 3 or 4. Children would come up to me and ask if I had a broken leg, and why I couldn’t walk. They also always used to ask why I used a buggy and a walker, and if they could push it. I started school at age 5. This is the age that we start school in the UK.

Growing up as a Disabled person definitely had its challenges. I would say that I missed out being able to build genuine friendships with non-disabled children and young people. In my opinion, this was due to non-disabled people perceiving me and disabled people in general as “different” in a negative way and not like them.

Throughout my life my mum ensured that she did everything in her power to help me “overcome” my Cerebral Palsy. Making sure I had access to different therapies to aid my development, fighting for me all the time so I had access to the right education, health, and care. However, one of the biggest things she did was ensuring that I accepted myself and my identity as a disabled person. That was the biggest hurdle I had to overcome, being comfortable and happy within myself. She made me see I could still reach my achievements and goals, and I can live life and be happy within myself. I had to learn that being different from others is not a bad thing, it is the ignorance of other people towards me that make things more difficult.
I faced a lot of ignorance during my school days, even at university level. However, it took me a long time to realise that it was nothing to do with what I had done, it was to do with their lack of knowledge and understanding about Disabled people. However, it is still very hurtful. I also experienced bullying in my first year of secondary school.

I believe that education should be fully inclusive, no matter a child’s ability or how severe their condition is. For me all Disabled children should be educated alongside non-disabled children. Even though I attended a mainstream school it was challenging. Especially when it came to forming friendships and not receiving certain academic support. However, I believe that is due to schools not working on things like having an inclusive attitude and non- disabled children not being taught about disability, equality and the Social Model of Disability from an early age.
Also, education needs to look at the strengths of the disabled person, instead of what they cannot do. I believe that if these things were embedded into the codes or philosophy of schools, mainstream schooling would be much more a positive experience for disabled children and young people.
Even though there were challenges in mainstream, I believe that it helped me with future life chances. For example, in mainstream school I was able to gain qualifications that I can use to apply for work. It also prepared me for how the “real world” works. I believe it is also a foundation for a disabled person to be able experience independent living.

In my view, special schools segregate disabled children and young disabled people from their non-disabled peers and makes Disabled people seem like “the other” and as a result it increases inequality. However, I do completely understand that parents can feel their child or young person has been let down by mainstream schooling and feel that they have no choice but to put their child in a special school. Also, in many countries I understand that mainstream schools refuse to educate disabled children, and the only choice is a special school or special unit, or in many cases no school at all.

My advice for parents of children and young people who are disabled and have special needs, is that there is light at the end of the tunnel. Medical professionals, experts, and even family and friend may paint a bleak picture, and you might feel like all hope is lost. You will most likely find that the biggest barriers that your child faces will come from society itself and not from their condition. You will face a lot of ignorance from non-disabled people. The fight against this is exhausting and there will be so many times you want to give up but you must persevere. Don’t hide your child away. Your child can live a full life, you just have to try and adapt to the challenges that are coming your way. You and your child are going to have to approach things in a different way, but this is not a bad thing. Focus on their strengths and their gifts, not always about the things that they cannot do. Your child is unique in their own way and a blessing from God. Don’t let anyone tell you anything different, they can still achieve their goals and dreams.

Day 21 ( 03.08.17) Thursday

At the beginning of Nimmy’s program at Peto, we were told that the Institute was going to merge with a University; it was no longer going to be on its own. The Government instituted a law that no college should stand alone. Either a college expands to become a University or it merges with a University. Peto institute decided to merge with a University.

Most parents were unsure of the outcome of the merger; some people even insinuated that they may no longer welcome international students.

This morning at the coffee shop I asked some of the mums with older kids if they could recommend another center especially in a country where people speak English.

One of the mums said something profound although her comparison was a bit hilarious. She compared going from one center to another center like changing a husband. She said one center may be better in one area than the other but in the end, they are all the same.

She said the most important thing was for me to observe what the conductors were doing and replicate it when I get home. She said it was all about consistency, a little here, a little there. Do something with your child every day. She told me the way she handled her son; she gave him chores which helps his muscle coordination.

It’s not like I just heard that for the first time but hearing it again kind of helped me to focus on what I was required to do for Nimmy. There are things one needs to hear over and over again so it could sink in.

I went back to the school and checked in on Nimmy, I took over from Peace and she stayed with Pemmy. It was water fight day. The kids were meant to try to shoot water at some set of cups; this would help their eye, hand coordination while having fun. The water shooting soon turned away from the cups and we started aiming at each other. You can imagine, little Pemmy couldn’t resist joining in the fun.

30 days in HungaryDay 21 ( 03.08.17) ThursdayAt the beginning of Nimmy’s program at Peto, we were told that the Institute was going to merge with a University; it was no longer going to be on its own. The Government instituted a law that no college should stand alone. Either a college expands to become a University or it merges with a University. Peto institute decided to merge with a University.Most parents were unsure of the outcome of the merger; some people even insinuated that they may no longer welcome international students.This morning at the coffee shop I asked some of the mums with older kids if they could recommend another center especially in a country where people speak English.One of the mums said something profound although her comparison was a bit hilarious. She compared going from one center to another center like changing a husband. She said one center may be better in one area than the other but in the end, they are all the same.She said the most important thing was for me to observe what the conductors were doing and replicate it when I get home. She said it was all about consistency, a little here, a little there. Do something with your child every day. She told me the way she handled her son; she gave him chores which helps his muscle coordination.It's not like I just heard that for the first time but hearing it again kind of helped me to focus on what I was required to do for Nimmy. There are things one needs to hear over and over again so it could sink in.I went back to the school and checked in on Nimmy, I took over from Peace and she stayed with Pemmy. It was water fight day. The kids were meant to try to shoot water at some set of cups; this would help their eye, hand coordination while having fun. The water shooting soon turned away from the cups and we started aiming at each other. You can imagine, little Pemmy couldn’t resist joining in the fun.

Gepostet von Diary of a Special Needs Mum Initiative am Mittwoch, 9. August 2017

Thank you

Starting this journal only came as an idea after a few days in Budapest. I really didn’t have it all planned out but I took it one day at a time, jotting down and taking notes of things that were happening around me. The content of this journal has been written from my perspective, and my perspective alone which maybe limited and at times based on assumptions.

To those who may have found some things annoying or seemingly untrue, to you I say accept my apologies, it was not my intention, I only related the facts as I saw them.

To those who took out time to read every single post and made comments I say thank you. You have given me the opportunity to improve my writing skills (Even though my English teacher was also reading and telling me I still have a long way to go in tiding up my English grammar and writing skills. Madam, Rome was not built in a day, lol).

To the new friends I made on this trip, it was nice meeting you. Hope to see you again.

To my friends and family, what can I say? The Lord has blessed me with loving and caring people.

To my dearest husband, thank you for being a loving and caring husband and father.

To Pepe, my dearest little daughter that loves eba and meat (cooked cassava flakes and beef) thank you for giving me stories to tell. Thank you for being Nimmy’s best friend and demanding sister. I know you can’t wait for her to join you in your play and mischief. Very soon dear, very soon.

To Nimmy, my miracle baby, daily I have watched you improve, I have watched you strive to do the things other kids do. I have seen your pain and at times frustration but I have also seen your smile and excitement. I know God has a plan for your life and I know that the plan is for a glorious end, for one thing I am sure, you will fulfil destiny in grand style.

 

What next?

Currently, I have a lot on my plate. Each day I learn to prioritize; I am still learning. Yes, family comes first but there are days I lock myself in a room to get my job done or to have a ‘me’ time.

Writing a home exercise plan for Nimmy and following up to ensure we daily carry it out is paramount. Consistency, they say in therapy, is everything.

I am currently writing two books and I am hoping to use the funds to start our first therapy and recreation center

I run two non- profit organisations: FLIPP Foundation and P4:13 Foundation (Philippians Four Thirteen Foundation)

P4:13 Foundation is working with a bigger foundation to change the way inclusive education is conducted in Nigeria. Currently Lagos State runs inclusive education in thirty-one public schools. We have chosen one primary school as a pilot run.

P4:13 Foundation is also working with a top media house to change the face of disability management in Nigeria.

On the other hand, FLIPP Foundation’s main focus is to inspire primary school children in slums to cultivate the habit of reading and building good values. Our next program comes up next month- A 2-day leadership programme for children. ‘Catch them early’

If you are interested in supporting FLIPP Foundation, we need help in the following areas

1. Volunteers who are ready to start reading clubs in public primary schools in their local government area

2. Volunteers (head teachers or school proprietress) who are ready to train teachers and mentor them

3. Donation of story books and dictionaries

4. Individuals who are willing to pay school fees for deserving children

School fees are as cheap as N10,000 ($27) per term yet some parents are unable pay. The fees can be paid to the school directly.

Tobiloba Ajayi – A Story Of Courage & Determination.

Tobiloba Ajayi is a Nigerian female writer living with Cerebral Palsy. She is a lawyer and advocate for people living with disabilities. She started her early education at the age of three. However, due to the complications of the condition, she did not start walking until the age of 12. She completed her primary, secondary and tertiary education in Nigeria. She obtained a master’s degree in International Law from University of Hertfordshire, United Kingdom. Her works include three published books namely Inspirations, Observe to do and Whos with me. She contributed to Nigeria Vision 2020 on disabilities matters. She was part of the team that drafted “the Lagos State disability Law”. She had worked at Mobility Aid and Appliances Research and Development Center (MAARDEC) and she currently works at Benola Cerebral Palsy Initiatives. She is a 2016 Mandela Washington Fellows.

  • Can you tell us what your parents told you caused your disability?

My parents told me that my disability was caused by lack of oxygen to my brain at birth. I was born pre term and the hospital wasn’t ready.

  • Do you think it could have been avoided?

I am not sure, based on my current knowledge that it could have been avoided

  • In this part of the world people usually say that disabled children are a form of punishment to their parents. What do you think?

I think that is a wrong way to think. A disabled child presents a challenge, but a child is never a punishment.

  • When did you realize you were different from other kids?

I think I was about 5 years of age

  • Can you tell us a bit about growing up with a disability

It was interesting. I dealt with funny questions and discrimination and I learnt to find my own way around doing things.

  • You once told me that your parents were instrumental to the person you have become today. Do you mind to expatiate on that?

My parents decided early that they were going to raise me as if I did not have a disability. My dad insisted that I was not broken in any way, I was just plastic. This shaped my world view and how I viewed myself and my disability.

  • From your profile, you didn’t start walking until you were 12 years? Wow! How did you feel?

I started school without independent seating at 3 and I sat independently at about age 6 or 7. I walked independently at the age of 12 in JSS2. I felt quite liberated.

  • You also mentioned earlier that you attended a boarding secondary school. How did you cope?

The ‘how did you cope’ question goes back to how my parents raised me. Since they had decided early that I was going to be raised like my neuro typical siblings, and they had all gone to boarding school, I already sort of knew I was going too.

Mentally, my family prepared me for boarding school. My older siblings gave me stories of their own experiences and tips and tricks. I was already used to doing chores from home so that was not a problem.

I got to school and like I grew up being told to do, I found my own solutions and developed my own unique coping strategies.

  • From your profile, you have two law degrees. One from a Nigerian University and another from a University from UK? How did you cope?

University was a follow up to secondary school; I had already learned how to live independently away from home. I knew how to live on a budget, I outsourced some of the things I couldn’t do. I was not afraid to ask for help. I created for myself, a system that worked for me.

  • Now this is mind blowing. You attended orientation camp at the National Youth Service and you were posted to Enugu State. What gave you the courage to go? Where you not scared?

Hmm, I think I was more excited than I was scared. I had already gone to university outside of Lagos where my parents live. For me, this was going to be my chance to prove to myself  that I could live independently without physical help from home and frequent daddy visiting days.

It was hard, but I pulled it off and I loved it.

  • In 2016 you were selected as one of the one hundred youth leaders from Nigeria to attend the Mandela Washington Fellows in The United States of America. How did you feel?

I was selected as one of the 100 Mandela Washington Fellows from Nigeria and 1000 fellows from Africa who eventually, after a six week academic training in the United States, met president Obama.

It was great to be selected, especially as the selection process was rigorous and merit based.

It reinforced for me that what I have chosen to do in Disability Management Advocacy has merit and it is not just in my head.

  • Recently you released a new book titled, Observe to do. This makes it your third book. Can you briefly tell us about it?

Observe to do started as my personal journal where I documented the things God was teaching me as I spent time with Him. In 2015 January, I heard God clearly; He told me to put the journal writings together in a book and allow others to be blessed with the knowledge. I did and that is why we have the book out today

  • Despite your physical disabilities you have become an inspiration to many youths. What motivates you?

Two things I think are my biggest motivators:

Losing my mother at 15 taught me in practical terms, the brevity of life and how each day is a gift that should be maximized to the benefit of others as much as you can.

The other thing is the realization that purpose is sometimes found on the other side of pain, and that God never wastes an experience.

There’s no way I would let all my experiences living with Cerebral Palsy in an interesting country like Nigeria go to waste

  • What is your advice to young people with disabilities?

If you are a young person living with a disability, I hope you have people around you who believe in your inherent abilities irrespective of your disabilities. If you don’t, find ways to motivate yourself to succeed beyond expectations. Become creative with solutions that work for you.

Choose the life you want. Have a picture of your future and start building towards that picture.

  • What would you like to say to parents with children with disabilities?

For parents raising children with disabilities, my message remains the same. Please see your child as a child, not just a diagnosis. Get them the best care you can afford, yes, but nothing beats pure love in raising a well adjusted child.

Focus on your child’s abilities, give your child an education, please. Find a way to ensure your child has an education, use empowering language around your child and watch him/her thrive and bloom.

Pastor Ololade Adamolekun- Jesus Kids Home for the Disabled

Pastor Ololade Adamolekun is a social worker; she is the founder of Jesus kids Home for the Disabled as well as JKs Autism Centre which is located in Ibadan, Oyo State, Nigeria.

 

  • What prompted you to start a home for children with special needs?

Starting a home for children with special needs wasn’t planned but I would say that it was a call from God. It all started in May 2010; I used to feed children with disabilities, play with them, pray for them and take them to the University College Hospital Ibadan for treatments when necessary. It was then I discovered they needed series of therapies and medical treatment.

 

  • You once told me that the school you started for children with special needs was not properly funded because parents did not want to spend money on their disabled children and in contrast the orphanage you started was filled up to capacity with children with disabilities. Can you please expatiate on this?

I started with an orphanage and parents would come and thereafter, abandon their children at our facility. It got to a point I reported this at the Child Protection Network. I was advised to start a day-care centre where parents will have to pay for the therapies needed. That was why I started JKS Autism Centre. It was established to give the required therapies to these children.

 

  • What do you think is the main reason mothers abandon their disabled children?

Mothers abandon their disabled kids because of several reasons. Many people consider these children to be evil spirits. Others believe they symbolize bad luck or their medical condition may be contagious.

When couples do not understand how to manage this situation properly, it usually results to problems in the home.

Some parents consider seeking medical intervention a waste of time. Some that start out seeking help usually expect an overnight recovery and when this doesn’t happen they give up hope and leave.

 

  • What has been your challenge so far in running Jesus Kids?

The major challenge we face is our raising funds to run the orphanage. The children’s therapies, surgeries and mobility aids cost a lot of money. We also need money for feeding, clothing and toiletries.

Our second major challenge is getting able and dedicated staff to take care of the children. Taking care of children with disabilities is not an easy one; they need constant monitor and care as majority of them are totally dependent on their caregivers.

 

With all your challenges what motivates you every day?

  • My motivation comes from the children. Every day when I look at them, I see a lot of changes in their lives. I see hope in their eyes. Many of them have come to know the Lord personally. They have also discovered their inherent talents and potentials. In Jesus kids, we try to bring abilities out of their disabilities.

 

  • What advise do you have for parents of special needs children

The first thing I would say is that parents should see this as a ministry. Secondly, they should get the right information about their child’s medical condition. Information can be gotten from medical doctors, reading books, through the internet and also by attending seminars where the issues are being discussed. Thirdly, parents should also see these children as gifts from God; they should love and care for them and not neglect them.

 

Mrs. Dotun Akande

Mrs. Dotun Akande’s journey into the world of developmental disorders in children started with her son, now recovered from autism. Like many other parents, she was not familiar with the condition and her exposure was limited to what she had seen on television or in films. Her experience with the non-availability of educational resources prompted the establishment of Patrick Speech and Languages Centre (Patricks) in September 2006. Patricks is the pioneer special needs centre in Nigeria for the education of children with Autism. The centre offers services such as speech therapy, occupational therapy and behavioral therapy. Also the centre offers social skills building and play therapy. Mrs. Akande is a mother of 3 and holds a Bsc degree in Economics from the University of Ado Ekiti. She has over 12 years banking experience before her switch into the world of developmental disability. Over the years has attended numerous training programmes on autism and other developmental disorders at various International Institutions including National Autistic Society (NAS) UK, Geneva Centre for Autism Canada, Western Psychological Services, USA and the Discovery Initiative South Africa. She holds a diploma in Applied Behavioral Analysis from Florida Institute of Technology. She regularly gives lectures on Autism and is a strong advocate for Autism awareness in Nigeria.

Bukola Ayinde

Bukola Ayinde is the Founder of P4:13 Foundation (an initiative for children with special needs). She is also the Founder of FLIPP Foundation (whose mission is to inspire a culture of reading, writing and building strong positive values among African children).

Bukola holds a bachelor’s degree in Law from Obafemi Awolowo University Ile-Ife, Osun State, Nigeria.  She started her career as a litigation lawyer before moving on to Human Resources Management. She is a Certified Trainer, an Organizational & People Development Consultant and an Alumnus of Fate Foundation.

She loves to volunteer her services especially at community development programmes. She was a volunteer teacher at King David Leadership School for Nigerian Youths in Lagos, Nigeria. She worked on a Public School Reform Project in Lagos, Nigeria and was the head of the teachers training team. Bukola has also organized essay competitions for university students.

Based on her experience as a mother of a special needs child, Bukola has become a voice for families who have children living with special needs in Nigeria and Africa as a whole.

Bukola is married to Olumuyiwa and they have two lovely daughters, Oluwalonimi and Oluwapemi.

Not too – FQA

  1. Why am I so unlucky to have a child with special needs?

Well, a doctor once told me I was just unlucky and it got me thinking. I do not believe that anything happens to a child of God and God is not aware. I do not know the end from the beginning or the reason God allowed it but he does. One thing I know is that I would never have taken up advocacy for children with special needs if I never had a child with one. I do not count myself unlucky in spite of what the world thinks. I daily depend on God for strength and I see him prove himself.  God is faithful….He has never failed, and he will not start with you and I.

2. Is there a cure for Cerebral Palsy?

A pediatrician once told me something that helped shaped my mindset from start (even though I still did my own research and made some few mistakes). Don’t go around the world looking for a cure. As at May 2017, there is no cure. However, it is non-progressive, which means it cannot get worse. The fact that a child has cerebral palsy doesn’t mean the child cannot live a healthy and meaningful life, depending on the diagnosis. The first thing to do is to get a correct diagnosis from a reputable hospital. Some kids may need surgery and drugs but most kids need therapy.  For more information on steps to take refer to our page on cerebral palsy.

3. I didn’t start my child’s therapy until he/she was 5 years old. Can he/she still learn?

Early intervention is the term used to describe services that reach a child early in his or her development, usually from birth through age three. Intervention is vital during this very early time because a child learns and develops at the fastest rate during these first few years.  It’s important not to miss out on this crucial part of your child’s development, as it may be more difficult to teach skills to your child as he or she gets older- United Cerebral Palsy

Having said that learning continues…it only takes patience, love, consistency, tenacity and perseverance. Depending on your child’s diagnosis, from severe to mild cerebral palsy;-this will also affect the rate at which your child will be able to learn. Remember, never say never!

4. Will my child die soon?

Children with mild forms of cerebral palsy have a normal life expectancy.  In fact a lot of children with Cerebral Palsy live into their adult years. However this is also dependent on some other factors such as if the child has other health complications.

Otherwise, your child is here to stay unless you have plans of killing your child. That would be called premeditated murder liable to capital punishment and in case nobody finds out, you will forever carry a heavy burden of guilt.

5. Is there any point in continuing with therapy as I cannot see an improvement?

People often ask me ‘is your daughter getting better?’ Is she responding to treatment?’ With Cerebral Palsy improvement is not magic. Except it’s a miracle from God which I pray for every day. You should learn to celebrate the little milestones achieved.  Different therapists have given me glorious testimonies of their past patients. However, cerebral palsy affects each person in a different way, so no two persons have the exact same experience. So if child A does therapy for 6months to a year and the child has obvious improvement and child B takes about four years to make that same achievement, does it mean the Physiotherapist could not perform magic? Not really, it may mean your child’s diagnosis is different from the last child he worked with. Keep doing the therapies, if you are not seeing results, do a critical assessment and review your therapy plan. Never give up.

6. Is my special needs child an evil spirit?

Cerebral Palsy is a medical condition. I repeat, cerebral palsy is a medical condition. The earlier you start to see it for what it is, the earlier you make a head way in the management.

7. Should I take my child for deliverance prayers?

I am not against prayers, but first, you must understand the reason you are taking your child for prayers. If you would take your child for prayers if he or she has malaria then you can as well take your child who has cerebral palsy for prayers.

If you think your child has demonic powers then that is where the main issue is. The truth is your child doesn’t need to have cerebral palsy to have a demon. Neuro typical developing children too can have demons. In fact if you have ever been to a deliverance praying church, you would see that lovely looking sisters also fall and roll on the ground under the anointing.

If you attend a bible believing church and your pastor wants to pray for your child, there is no problem as long as the prayers are based on the word of God (which you the parent has read before and understood.)

Do not be deceived, many people will see different visions; they will lay the root cause of your child’s medical condition at the feet of your enemies (not the devil but human beings with names attached to them)

My opinion, stand in the gap for your child. Pray for your child as an authority over the child. Look for what the bible says concerning healing and say it over your child. People will come with all sorts of advice. Some may say there is a powerful man of God that can heal your child. If you must, tell them to go on your behalf without your child. Their prayer of faith should touch your child wherever your child is.  Beware of false prophets; you will wear yourself and child out by going from one prophet to another, from one church to another. May the Lord give you wisdom.

8. Will people accept my child?

I have friends who love and accept my child but largely, there is still a lot of ignorance as regards cerebral palsy. Some friends come to my house and completely ignore my child, they prefer to interact with my typical developing child.  Some would not even invite her for their kid’s birthday parties. Well I still take her for the parties anyway, lol. I also try to educate people that come to my home about my child.  I like to tell them that she knows most things children her age are supposed to know even though she can’t pronounce them clearly.

You will need to educate the people that you come across about your child’s medical condition.( Please don’t be rude or nasty to people who do not understand your child, thank you.)The most important thing they need to know is that it’s not contagious, lol.

I recently visited a public primary school in Lagos Nigeria that practice inclusive education. I was told that when Lagos State government introduced inclusion in that particular school, some parents withdrew their children from the school. However, the most interesting thing happened.

An NGO got Oando Foundation to renovate the entire school and donate playground equipment. I was impressed with what Oando did at the school. Parents started begging to have their children attend the school.  It’s really amazing.

9. Now that I know my child’s diagnosis, I feel my life is over because of this child and I want the child to go away, what do I do?

Having a child with disabilities is not a death sentence. Yes, u can cry for the child you wanted to have but did not. Thereafter, stand up and pull yourself together. There is work to be done. You need to find out about your child’s therapy plan and what works for you and your child. If you cannot afford private therapies then you need to find out what government hospitals you can get affordable therapies. You need to look for a school that can take your child. If you can afford a care giver, then you need to diligently pray and search for one.

10. Is it morally right for me to drop my child in a home for children with disability?

The best place for a child to be and thrive is in a child’s home with the child’s family. The first thing a child needs is love and acceptance. No matter how severe the case may be.

If you are totally incapable of taking care of your child then you may consider a home for children with disability. In Nigeria, if you have actually visited a home for children with disability then you would understand that keeping your child at home is better than taking your child to one.

11. I have been praying and nothing has changed, is God angry with me?

When Jesus was on earth, he healed different people, for some he did instant healing; just by the his word, for another he put mud on his eyes and told him to wash by the pool. I do not know how God will heal your child but even your child’s little milestone achievements are miracles in itself. Jesus’s disciples saw a man that was born blind and they asked his disciples, who sinned; this man or his parents? Jesus said neither of them but that God may be glorified. Stay positive, don’t lose hope. God is not angry with you. He makes all things beautiful in its time.

12. People call my child derogatory names. What do I do?

I know two young adults with disabilities. One of them, with all she has been through still radiates love and warmth while the second has become bitter and angry. You may not be able to stop others being hateful and spiteful to your child, but you can teach your child how to love and forgive. People act based on their knowledge per time. If they know better, they would act better. All said and done, defend your child, as much as possible don’t put your child in harm’s way.

13. More than 5 schools have rejected my child, what do I do?

Keep looking, don’t give up. Don’t put your child in a school that feels they are doing you a favor. In fact teach them to educate their academic and non academic staff about disability and acceptance before putting your child in their care.

14. My neighbour has a child with special needs, how do I relate to them

Educate yourself by doing a quick research online. Don’t be afraid to ask questions from the parents. Some may be secretive about their special needs child, (ok, so just pray for those ones) but really just say hello to the child and teach your children to be nice and friendly.

15. I don’t know how to react to children with cerebral palsy?

Just say hi! From there you can start a conversation. You will be surprised. Sometime ago, I walked into a classroom with children with different special needs and this young boy who has down syndrome walked up to me and gave me a welcome hug. I went round giving everybody a handshake. Two boys who were autistic ignored me but all the other kids responded and when I was leaving the classroom the young boy who has down syndrome requested for a goodbye hug. That was a public school in Nigeria. I made friends and I am certainly going back there.