Love without Boundaries with Bukola Ayinde: Why are You Afraid of a Child with Disability?

In my quest to understand better the concept of inclusive education, I did a little research and discovered that in Denmark and some other European countries, inclusive education is seen as developing a school for everyone.
There is a national strategy for the implementation of inclusive education. Learners are seen as diverse individuals, and everyone can get support in their own studying group. Classrooms are therefore very diverse. Teacher education has also been redesigned to support the implementation of inclusive education. In Denmark, diversity is seen as a resource for development, and inclusive education as a means to address the challenges. I will discuss further about this in subsequent articles on how to run an effective inclusive school.

Last month, I had the opportunity to speak with a mum who has a six year old daughter living with cerebral palsy. She complained that she had been trying to get a school that her daughter could attend without success. A school agreed to accept her daughter. Her daughter spent only one week at the school before she was asked to withdraw her. When the mother asked what happened, she was told that another mother who had three neuro-typical children (children developing normally) in the school threatened to remove her three children if the six years old girl was not asked to leave the school. Presently, this little girl is at home.

I have seen some children who have been asked to leave school because they can’t use their hands or talk. My daughter, Nimi is unable to use her hands and she doesn’t talk clearly, but she attends school and she does so well academically. It saddens me to see other children in her shoes who are denied the opportunity of going to school based on their physical challenges.

It is true that some schools do not have the requisite knowledge on handling children with disabilities. However, the easiest way to start is to have an open mind and to show empathy. There are non-profit organisations that train teachers on how to teach and manage children with additional needs. There is a lot of information on the internet.

Some schools that are willing to accept children with disabilities face opposition from other parents who do not have children with disabilities. I understand the fact that most schools are for profit making and would therefore make decisions that would protect their revenue. Often times these decisions involve withdrawing the admission of a child with disabilities. I have been told it is a sacrifice the school has to make so it doesn’t close down.

My question today is this: as a parent of a neuro-typical child (a child without disabilities) what are you afraid of? What are your fears? Why do you find it uncomfortable to have children who have disabilities attend the same school with your children?

I have heard statements such as ‘how can abnormal children be in the same class with normal children? Some parents call children with disabilities demons. My question is, have you seen a demon before? What does it look like? Disabled?
The Bible says that the head of demons was one of the most gorgeous creature God made. His appearance was beautiful and dazzling. He was covered with every precious stone: gold, sardius, topaz, diamond, beryl, onyx, jasper, sapphire, emerald, and carbuncle.

Does that sound anything lower than perfection? Certainly not.
I have been to deliverance churches and I have seen beautiful sisters and brothers roll on the floor and manifest different spirits under the anointing. A child doesn’t need to have disability to be under strange influence.
Some parents say they do not like their children to associate with children that drool. The fact is I do not understand how the saliva will touch another child. Secondly, saliva is not poisonous. Thirdly, neuro-developmental disorder is not infectious in any way. It is a brain disorder, usually occurs at birth or early years of a child’s life.

Then permit me to pose this question: if in the future you become ill, let’s say stroke or Alzheimer’s disease would you prefer your child to abandon you or hide you in a room? You may say it is not your portion, but I have come to understand that the world is not a perfect place. I believe no one dreams of growing up to become dependent on others neither does anyone pray to have a child with disability.

Last month while speaking to a 21 years old girl living with a learning disorder and cerebral palsy, she immediately tried to cover her face. I told her not to apologise for who she is because she was not given an opportunity to choose her life; if she had, I bet she would have chosen to look like Agbani Darego.

On the other hand, which we are not too patient to discover, having children living with disabilities in our schools have benefits that cannot be overemphasized. It brings creativity into the classroom. The teacher may need to introduce creative ways to teach the child with special needs. Whatever method she comes up with will benefit other children who may be having difficulties in some subjects. The children will also make creative ways to speak or play with their disabled classmate. They will understand early that life is not perfect. They will learn to accept differences, show love and empathy to people especially those who are venerable.

The children we are shielding away from special needs children are the future leaders who would become doctors and scientist that would champion the search for a cure for developmental disorders. They are the future public workers who will make laws that would improve the welfare of people living with disabilities. They would ensure that people with disabilities have access into all public buildings. They would build roads and pedestrian bridges having in mind that physically challenged people will also use them. They will provide buses that have ramps and give concession to people with disability. They will provide parking spaces for disabled people that are close to the entrance of buildings. They will manage organisations that would employ people living with disabilities. They will pastor churches that speak to their congregations about loving their neighbours who have children that have disabilities.

Remember, not everyone is born with a disability some other people acquire a disability through their journey in life. No one knows tomorrow. Let’s make the world a better place for everyone.

Source: https://www.bellanaija.com/2018/04/love-without-boundaries-with-bukola-ayinde-why-are-you-afraid-of-a-child-with-disability/

Inclusive education for children with disabilities

My name is Bukola Ayinde and I have a five-year-old daughter who has cerebral palsy. Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by damage to some parts of an immature developing brain.

When my daughter Oluwalonimi whom we fondly call Nimi was just a little over a year old, her paediatrician recommended that we take her to a neurologist for an assessment.

She was assessed by a professor at the Lagos University Teaching Hospital. At the end of her assessment, she was graded as a stage 5 (stage 1 being least affected by cerebral palsy and stage 5 meaning most affected). My husband and I were told she would never be able to do a lot of things. We were told she might never be able to walk or talk or sit independently among other things. We took our beautiful daughter home knowing we will love her no matter what.

 

Not knowing what to do, being a first-time mum, especially a mum with a special needs child I asked around and someone suggested I take her to a special needs school. I was directed to a special needs school on the mainland in Lagos, Nigeria. After six weeks, my husband and I took our daughter to the Peto Institute in Hungary, Europe. It is a school for children with cerebral palsy.

Being in this school with my daughter made me realise that children, no matter their status or medical condition should be treated with dignity. It was a beautiful school with great facilitators. The entire facility was adapted to meet the children’s needs. The chairs and tables were suited for them. There were long horizontal bars by the sides of the wall that the children could hold on to. This would enable the ones that could walk with support move along the corridor of the school on their own.

The restrooms were also adapted for their use. Instead of a handle for flushing the toilet, there was a rope to pull which was hanging down from the top of the restroom wall. It was easily accessible to any child who had shaky movements or unstable grip which is common with people living with cerebral palsy. Our daughter attended the summer session and we could only stay for a month.

When we returned home, I made up my mind that my daughter wasn’t going to attend a special needs school in Nigeria. I had seen the difference when I travelled to Peto and I knew there was no centre that could provide that in Nigeria. I decided to homeschool my daughter and recreate the Peto experience.

My husband and I employed a speech therapist, an occupational therapist, a physiotherapist and a professional caregiver. These four professionals attended to Nimi at home. One of the therapists told us about the benefits of inclusive education. In Inclusive education, children with disabilities and those without disabilities participate and learn together in the same classroom.

The therapist said this type of education will improve my daughter’s social skills. On further research, I also discovered that when children with developmental disorders learn together with other children who do not have any developmental delay, children with developmental disorders tend to imitate the actions of their peers such as crawling, standing or walking. Please note that children without disabilities will not copy actions such as not being able to sit, stand or drool. They would not also get infected with cerebral palsy because it is noninfectious.

Children without disabilities also gain from this interaction because it enhances creativity in the classroom. It teaches acceptance of difference and the children to learn to be more accommodating and show empathy to other children.

My daughter’s therapist suggested that we find a regular school that Nimi could attend. This woman promised to give us a caregiver that would stay with Nimi at school.

I bought into the idea and began to search for a school. Getting a school for my daughter wasn’t as easy as I thought. I didn’t want her to go far away from home but at the same time, I wanted a good school that could meet her needs. The proprietor of the first school I went to said there was no space to meet her needs. I made a list of the schools she could attend and discussed the options with her therapist. The therapist works with children in various schools around Lagos. One after the other, we had to tick off many schools from the list.

The thought of subjecting myself to a series of rejection did not sit well with me. I spoke with the mother of a special needs child and she recommended her daughter’s school. I visited the school and met the proprietress who was very welcoming. She gave me a date to bring my daughter and her caregiver for an interview. I was nervous, praying they wouldn’t reject my daughter too. My husband came along with us for the interview. At the end of the interview, Nimi was given admission to the school.

Even though Nimi could not talk for a long time and we were not sure she was learning anything, we kept her in school with her peers.

When Nimi was physically assaulted by one of her physiotherapist, I withdrew her from school. I was through with mainstream schooling; I was determined to homeschool her myself. I asked some of my friends who had children in Nimi’s age grade what their children were learning in school. I wrote a study plan and we started homeschooling. She also had a nursery school teacher who attended to her at home three times a week. She taught her sounds and numbers.

We were later encouraged not to allow one ugly incident keep Nimi 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.

A big thank you to all the speech therapists that worked tirelessly, the occupational therapists, the physiotherapists and our beloved caregivers.Thank you for believing in our dream that Nimi could learn. Thank you to all Nimi’s teachers and school proprietress who gave her a chance to study with her peers.

After close to three years of Nimi attending school and learning to read, she exceeded our expectations. At age four, she could identify all the 26 letters of the alphabets and associate them with objects. She could count from 1 to 50 and also count backward up to 10. Today she is able to read from 1 to 150. She is able to do her numeracy; additions and subtractions.

Her class teacher once told me that if Nimi feels she is being neglected during a class session, (maybe the teacher is not asking her questions or not making facial contact with her) she would get her teacher’s attention and show her displeasure. That was achieved by social interaction.

I remember her school’s Christmas party, her class teacher asked the children a question, ‘What are the things that help a plant to grow?’ She took the microphone to Nimi and my baby shouted, ‘water’. The other parents at the event were pleasantly surprised. They clapped and cheered. On the 2nd of March, 2018, I attended the spelling bee event in her school and my daughter took part in spelling words.

Amazing, I must say because Nimi is still unable to talk clearly and she is fully dependent on others to do most things, like sitting, standing using her hands and eating. But as her parents, we have decided to focus on the things that she can do while seeking therapy for the things she cannot do.

If we had decided that Nimi will not go to school until she was able to talk, use her hands, or walk, she may still be at home, unlearned; not fully able to engage her world.

It is true that having a child with special needs changes your life a great deal but it also gives you the opportunity to write a beautiful story out of a seemingly hopeless situation.

March is Cerebral Palsy Awareness Month and March 25 is Cerebral Palsy Awareness Day, I will like to share a few things with us:

  • Cerebral palsy is the most common childhood physical disability with over 17 million people worldwide
  • In a study conducted at Lagos University Teaching Hospital, it was found that cerebral palsy affects 1 in every 90 children born in Nigeria today.
  • It is caused by a brain damage that may occur during birth, after birth or the early years of a child’s life
  • It affects the muscles, movement and coordination of the affected person. Therefore, some children are unable to walk, use their hands or sit upright. Some children may be unable to speak and for some others that can speak, speech may be unclear.
  • People with cerebral palsy are not dangerous, you do not need to run away from them. You can just say hi!
  • It is noninfectious and therefore you can shake, hug and speak to people with cerebral palsy
  • Having cerebral palsy does not mean a person is unable to hear, listen and learn.
  • A child who has cerebral palsy and cannot speak or use his/her hands can also learn under the right conditions
  • Every child has a right to education. Every child has a right to go to school.

Source:https://guardian.ng/features/inclusive-education-for-children-with-disabilities/

Some Nigerians think kids with disabilities are demonic –Mother of five-year-old with cerebral palsy

Bukola Ayinde is the mother of a girl with cerebral palsy allegedly abused by her therapist. She talks about the current state of her five-year-old daughter among other issues with GBENGA ADENIJI

What is the current condition of your daughter with cerebral palsy captured in a CCTV footage that went viral on the Internet in 2016 while being allegedly assaulted by her therapist in school?

My daughter, Nimi, is a five-year-old girl with cerebral palsy; apart from that, she is fine. Judging by what she has been through, I would say she is indeed a strong girl.

 

What further steps did the Medical Rehabilitation Therapist Board of Nigeria take after the matter went viral?

Well, they felt I was trying to put them in a bad light and thereafter, I didn’t get any other communication from them. Our lawyer wrote the board a letter asking them to give the US Consulate some documents but they replied that the right department would do it but no department got in touch with us. I was informed that the ministry of health set up a panel to investigate the matter but the outcome of that panel has yet been made available to us.

Some people petitioned the US embassy over the matter when the therapist reportedly travelled to the country. What did the embassy do about it?

The US consulate contacted us. They said they would make their own enquiry. Later on, I was informed that since she was no longer in the United States, the matter was no longer within their jurisdiction.

Do you think justice has been served on this matter?

The matter has not been handled properly by the appropriate authorities in Nigeria. Nevertheless, justice for me is that that the lady in question is not allowed to work with vulnerable people. For now, that has been achieved.

Does your daughter still undergo therapy and attend school?

Yes, my daughter has her therapy sessions three times a week. Her therapies are conducted at home; in the sitting room. I sit in for her sessions and when I am not available, her caregiver sits in for her session. She is not left alone with her physiotherapist.  After the incident with her former physiotherapist that took place at her school, I withdrew her from school. I decided to undertake home school her. I did that for some time before I was advised by a friend not to allow one incident to discourage me from allowing my daughter to go to school with her peers. I decided to give it another chance, though I was very skeptical. I am glad I did. She is doing very well. She has friends in school and she is an above average student. That for me is amazing because we were told she may never be able to learn.

 

As a mother of a child with special needs, what would you say is responsible for the abuse of vulnerable children?

Generally vulnerable children are easy targets of any form of abuse. They cannot defend themselves. A child, who is non-verbal, will not tell you that he/she has been beaten or sexually assaulted. Unless you discover by chance, it may go unnoticed.

When dealing with children with disabilities, abuse can come in diverse ways. In Nigeria, some people believe that children with disabilities are evil and demonic. Some say that parents, who have these children, have done some wrong things and they are being punished.

When parents lock a child up in the house because the child has disabilities, that is a form of child abuse. Some children with disabilities are not allowed to go to school, get medical help or interact with anyone outside the home. That is also a form of child abuse.

Another form of abuse that we don’t often talk about (as much as we should) happens within the walls of some religious centres.

Children with disabilities are termed demonic and are made to undergo certain inhumane forms of deliverance. Some religious leaders chain children to the ground and beat them asking the helpless children to denounce any form of association with demons. Some starve the children and literarily wait for them to die.

Another area I would love to point out is in the area of professional care for children with disabilities. Nigeria does not have a good number of professionals in physiotherapy, occupational therapy, speech therapy and paediatric neurology. Therefore, a lot of quacks have filled the gap. This has caused a lot of mismanagement of disability cases. The government parastatal in charge of managing rehabilitation therapists need to come up with a better strategy to sanitise the system.

How can parents know if their child is being abused?

As a parent, you have to be very observant. Abuse can come from anywhere – the school, at home, in the church, among friends and even within the family. Make it your business to study your child. If you are observant, you will see the signs. In my case, though my child was non-verbal at the time, she became withdrawn. Before the period of abuse, she would smile at people and make friendly facial gestures. All that was not there anymore. There were some days in the morning when I got to her school to drop her off and she would start crying. That was a pointer that something was wrong but it never occurred to me that her physiotherapist was assaulting her.

What role do you think government can play in checking child abuse especially with regards to children with disabilities?

There is a prevalence of ignorance in our society about children living with disabilities. Some people do not consider them as normal human beings. The fact that a person has developmental disorder or a disability doesn’t make them abnormal. They are human beings like you and me. They should be accorded respect and dignity.

The government needs to sensitise the public to change the current social perception of children with disabilities. The government shouldn’t delay in signing into law the disability bill. When the government provides medical and rehabilitation centres where children with disabilities can be cared for adequately, some form of child abuse will be reduced. Cases of child abuse that have been reported to the authorities should be investigated and the matter properly handled to serve as deterrents to others.

What is the focus of your newly formed initiative on kids with special needs?

Diary of a Special Needs Mum Initiative was founded based on my experience as a mother of a child with cerebral palsy living in Nigeria. The journey has not been easy; it is like walking through a maze. You are trying to find the best way to help your child. It is almost like you against the world.

You have to adjust your financial budget to accommodate the medical and therapy expenses your child will require. You need to set aside money to buy certain rehabilitation equipment that your child will need. You need to look for the right school for your child. The family needs to guard themselves against social stigma. In a lot of cases, the fathers are no longer on the scene.

My initiative was formed to encourage and support mothers who have children with disabilities with a focus on cerebral palsy.

We also propagate the need for inclusive education for children with disabilities. The fact that a child has cerebral palsy doesn’t necessary mean that a child has learning disabilities. When you put the child in a special school, how do you want to integrate him/her into society? There are no special universities, no special working environment and no special countries. My child has cerebral palsy, she was categorised as a stage five (being the highest level) based on severity yet, she is doing very well in school.

We also educate the public about disabilities. I strongly believe that if we demystify disabilities, then we can make progress in their management. I write articles for newspapers and online magazines on disability and related issues. I am having a book presentation next month, April. I have written three story books to teach about disabilities with a focus on cerebral palsy. They would also teach children to show love and empathy to children who are different from them.

Source: http://punchng.com/some-nigerians-think-kids-with-disabilities-are-demonic-mother-of-five-year-old-with-cerebral-palsy/

Love without Boundaries with Bukola Ayinde: Every Child Deserves to Go to School

Every child, no matter the race, ability or status deserves to go to school. They deserve to be respected and treated with dignity. Quality education should not be an exclusive right of children who are physically fit and able to sit with the right posture. The fact that a child looks or acts differently from other children doesn’t automatically exclude him from getting a befitting education.

Recently, I spoke with a man whose seven-year old son has cerebral palsy. Fortunately, the man is a teacher so he put his son in the school where he teaches. At the end of the term, his son was the best student in the class. However, the school refused to give the boy the first position because (according to the school) it would look bad if a child with disabilities is seen to perform better than other children without disabilities. After that term, the father was encouraged by the school to remove the boy from mainstream school and enroll him in a special needs school. I asked the father what his son does in the special needs school. According to him, he does a few exercises and he is taught to put together some learning blocks.

In plain terms, the boy’s life had regressed. I encouraged him to look for a mainstream school to put his son and I told him that his son will surprise him in the future.

I must say that not all special needs schools do nothing. There are other special needs schools in the country doing amazing work. Albeit, the goal of the special needs school is to prepare the children in their care to be integrated into mainstream schools.

Some weeks back, I visited Patrick Speech and Language Center, a school for children with Autism. The amiable Mrs. Dotun Akande took me around to see the center. Fantastic, I was impressed with what she had done in the school.

When a child gets to Patrick Speech, the child is assessed to determine how best to work with him/her. Once work begins with the child and there is significant improvement in his behavior, he is introduced into the mainstream school gradually. The child could start with two or three times a week in the mainstream school and the other days at Patrick Speech until he is able to make the full transition. Sometimes, the children may require some level of assistance in the mainstream school. A caregiver or assistant could step in where necessary.
However, the children who are unable to make the transition are taught life skills and vocational training such as shoe making, bead making, sewing, art work and many more.

On the other hand, I have once suggested to a parent to withdraw her child from a mainstream school. The school her child was attending claimed to run an inclusive center. However, her child was excluded from most activities and was kept at a corner of the class. When other parents complained about the boy (the parents requested that all the children with disabilities should leave the classroom) the school moved her son with some other boys who had autism to a separate class. Her son was not achieving anything excepting marking attendance. After I spent some moments watching her son, I realized that the boy will do better in a special school that understands his condition and has plans of helping him to get integrated into a mainstream school. I also suggested to her that if she could not afford such a special school, she should employ a behavioural therapist to work one on one with the boy at home until he can be integrated back to the mainstream school.

My admonition to parents of children with disability is that they should obtain the right diagnosis for their children. That is the starting point. This diagnosis should come from a paediatric neurologist after series of test has been carried out.

Secondly, no matter the diagnosis, believe your child can learn. Eventually, this may not be so but it is better to start early in teaching your child than to waste precious years based on wrong assumptions.

Start teaching your child from the home. Talk to your child like you would your friend. Ask questions and expect feedback. Read to your child and introduce words to him/her. Even if he cannot speak, believe that he hears you and keep depositing knowledge into him. I have seen and read amazing stories of children whose parents believed that they could learn despite their complicated diagnosis and the children turned out surpassing their parents’ expectation. Your child’s story could be the next if only you try.

Source: https://www.bellanaija.com/2018/03/love-without-boundaries-bukola-ayinde-every-child-deserves-go-school/

Love without Boundaries with Bukola Ayinde: Learn About Disability & Help Reduce the Ignorance

A few weeks ago, a school proprietress called me to speak with a parent. The woman had withdrawn her son from school because someone had insulted her by referring to her son who had cerebral palsy in a cruel and demeaning manner. Last month, I met a proprietress who lost eighty percent of her students because she admitted a child with special needs. A parent who has a child living with cerebral palsy said the parents of the other children in his son’s class were grumbling about their children staying in the same class with his son.

One of my daughter’s therapists told me about one of her clients who locked herself at home and didn’t go out any more because she was being referred to as a mother of an imbecile. This woman went into depression and started gaining weight. Another friend told me about her experience with a boy who was attending school for the first time at the age of eight. He stood right there on the school field and stared at the blue sky. He was fascinated with the sky because that was the first time he was seeing it. His parents had kept him at home, away from questioning eyes.

I can go on and on….people living with disabilities suffer unduly because of the prevalence of ignorance in my society.

Some parents due to fear of rejection by their friends and the society, hide their children who have special needs. The children may not get access to medical care on time and therefore lose the opportunity for early intervention. When there is early intervention in any medical condition, it gives children a greater chance to correct their disabilities.

On the other hand, our society has a major role to play in disability management. Like I love to say, neurodevelopmental disorders such as autism, cerebral palsy, down syndrome are medical conditions and they are not contagious in any way.

People are usually afraid of what they don’t understand. To make our world a better place, some people dedicated their lives to studying the earth, the galaxies and they made some discoveries which served as a basis for numerous inventions that benefitted mankind. For a long time, people thought the earth was flat until it was disputed by early Greek Philosophers who asserted that the earth was round. Some people studied medicine and provided a cure for deadly diseases that could have wiped out mankind. If these people had allowed fear and superstitions to hold them back, mankind would still be in the Stone Age.

Until we begin to look at neuro developmental disorders as medical conditions which need to be treated or managed, we may not see much advancement in disability management in Nigeria.

According to Professor Afolabi Lesi, a neurologist with the University of Lagos, based on a research conducted by the university, out of ninety babies born in Nigeria, at least one is diagnosed with cerebral palsy. This does not take into cognizance children whose delivery was done by traditional birth attendants (TBAs), or mothers who gave birth in the church or those done at home. He also said that there are currently six hundred million persons with disabilities throughout the world, out of whom four hundred million live in developing countries and eighty million in Africa.
According to the world report on disability published in 2011, about twenty-five million Nigerians had at least one disability or the other. It is also estimated that over a million children living in Nigeria have autism. I visited a public primary school in Lagos State that admits children with disabilities. There were over seventy students with disabilities there.

It is also a fact that a good number of these children live to adulthood. This means that we have a society that has a large number of children with disabilities yet we are still denying or ignoring their existence.

The one thing we are yet to understand is that every living human being is a potential disabled person. Loss of limbs (caused by accident or diseases such diabetes), mental illness which includes loss of memory (common to old people) or damaged organs (resulting in kidney or heart disease) can make a person fall into that category. Not everyone was born with a disability. When people grow old, they begin to depend on others. They are not as strong as they used to be and cannot meet most of their needs. Sadly, there is little or no plan for these old people, usually called senior citizens, in Nigeria. No wonder we have very few old people’s homes in my country. No wonder the pensioners are not treated fairly by the government.

If we do not intentionally ensure that we teach people, especially children about disability, if we do not ensure that we promote laws that will benefit people living with disabilities; if we do not provide facilities or infrastructures to make life easier for people with disabilities, then we must pray fervently that we or our families do not eventually require these services.

Those who want to make life easy for people living with disabilities can take the following steps:

As an individual, what can you do differently today? Check Google and learn about different disabilities, (Autism, Cerebral Palsy, Down Syndrome, Learning Disability, Physical Disability etc.) how they can be prevented and how to get help (in case you see a helpless first-time mum).
Teach your children about disability; teach them to show empathy to people who have disabilities.
If you run a school, have a disability awareness day. Let the children understand that there are people with different medical conditions and appearances that may be different from theirs. Teach them to show empathy to others and stand against bullying.
If you own a company, reserve some positions for people living with disabilities.
If you are a teacher, learn about the best ways to teach children with disabilities.
Family members and family friends who relate with such children should be kind and show support.
Remember, evil prevails when good people keep quiet and do nothing.

Make a change in your world today.

Source: https://www.bellanaija.com/2018/03/love-without-boundaries-bukola-ayinde-learn-disability-help-reduce-ignorance/

Love without Boundaries with Bukola Ayinde: Finding a School for Nimmy

One of the joys of motherhood is to see your children go to school. It is such a pleasant sight to see them in their cute little dresses or shirt and shorts, wearing socks and tiny shoes, carrying little backpacks and lunch boxes. Some women start ‘shopping’ for a school for their children even before they start having children. Let’s just say I wasn’t too different from this kind of women.

When I was pregnant with my daughter Nimmy, I enquired from friends who had children attending pre schools about the best schools around my community. I was given several names of schools and I limited my choice to one. When I eventually gave birth to her, whenever I drove past the school I had chosen, I would look at Nimmy in her car seat and say, ‘Hey Nimmy! Take a look at your school.’ Even though she didn’t understand what I was saying, I still said it confidently with a wide smile.

When my daughter was born and diagnosed with cerebral palsy, I threw the dream of her going to that particular school into the dustbin. I had been told her case was severe; she may never be able to do most things like other children. I was told she may not be able to read and write, sit or stand.

I began to ask around for what to do about my daughter’s condition and I was directed to a school for special needs children. In May 2014, at seventeen months, Nimmy attended a special needs school in Lagos, Nigeria. The proprietress was kind enough to give me a concession. I was allowed to stay with her in school. That meant Nimmy would not be put in the same classroom with other kids. A room was allocated to us. Nimmy’s younger sister was just a baby, so I used to bring her along with her nanny and we would all stay in that room.

The therapist and teachers would attend to her in the room and when it was time for water therapy (swimming), I would take her outside to join the other kids. We did this for six weeks.

In July of that same year, my husband and I took our daughter to the Peto Institute in Hungary, Europe. It is a school for children with cerebral palsy. Being in this school with my daughter made me realise that children, no matter their status or medical condition should be treated with dignity. It was a beautiful school with great facilitators. The entire facility was adapted to meet the children’s needs. The chairs and tables were suited for them. There were long horizontal bars by the sides of the wall that the children could hold on to. This would enable the ones that could walk with support move along the corridor of the school on their own.

The restrooms were also adapted for their use. Instead of a handle for flushing the toilet, there was a rope to pull which was hanging down from the top of the restroom wall. It was easily accessible to any child who had shaky movements or unstable grip which is common with people living with cerebral palsy.

My husband and I attended the summer session and could only stay for a month.

When we returned home, I made up my mind that my daughter wasn’t going to attend a special needs school in Nigeria. I had seen the difference between a regular school and a special needs school. They were worlds apart so I decided to homes-school my child.

My husband and I employed a speech therapist, an occupational therapist, a physiotherapist and a professional caregiver. These four professionals attended to Nimmy at home. One of the therapists told us about the benefits of inclusive education. In inclusive education, both children with disabilities and those without disabilities participate and learn together in the same classroom. The therapist said this type of education will improve my daughter’s social skills. On further research, I also discovered that when children with disabilities learn together with other children who are developing normally, the former tend to imitate the latter’s actions such as crawling, standing or walking. Children who are developing normally also gain because they learn to be more accommodating and show empathy to other children.

She suggested that we find a regular school that Nimmy could attend. This woman promised to give us a caregiver that would stay with Nimmy at school.

I bought into the idea and began to search for a school. Getting a school for my daughter wasn’t as easy as I thought. I didn’t want her to stay far away from home but at the same time, I wanted a good school that could meet her needs. The proprietor of the first school I went to said there was no space to meet her needs. I made a list of the schools she could attend and discussed the options with her therapist. The therapist works with children in various schools around Lagos. One after the other, we had to tick off many schools from the list.

The thought of subjecting myself to a series of rejection did not sit well with me. I spoke with the mother of a special needs child and she recommended her daughter’s school. I visited the school and met the proprietress who was very welcoming. She gave me a date to bring my daughter and her caregiver for an interview. I was nervous, praying they wouldn’t reject my daughter too. My husband came along with us for the interview. At the end of the interview, Nimmy was given admission to the school.

My experience in getting Nimmy a school wasn’t that bad but when I listened to other parents recount not-so-pleasant experiences, I realised the following truths about my country, Nigeria:

  • There is a prevalence of ignorance about children living with disabilities.
  • Nigerian schools are yet to understand the concept of Inclusive Education.
  • Some schools that are willing to accept children living with special needs find themselves losing students because some parents will withdraw their children from the school. These parents do not want their children to attend the same school with children living with disabilities.
  • I also discovered after a visit to a public primary school in Lagos State that the Special Needs Inclusive Public Schools (schools that accept children with disabilities) in Lagos State are in dire need of an overhaul.

In the next few weeks, I would be discussing the challenges of Inclusive Education in Nigeria and offering practical solutions.

Source: https://www.bellanaija.com/2018/02/love-without-boundaries-bukola-ayinde-finding-school-nimmy/

Love without Boundaries with Bukola Ayinde: All Children are Welcome

It will be a thing of joy to see the above caption written boldly on the doorpost of junior churches all over the world. That it doesn’t matter the colour of your skin, whether you are cool or not so cool, whether you have an impairment or not but that a child is seen as a child and not a label.

Children all over the world all want the same things: to be loved and accepted. It is a privilege as a church to provide an enabling environment for children who attend to thrive.

If your church desires to welcome all children to fellowship with them, then you need to consider the following factors. These factors are not just for children, but also for teenagers and adults living with disabilities. This is because children will not remain children forever.

Ramp Up Accessibility
When a church truly desires to welcome people with disabilities, then the leaders have to go the extra mile to ensure that the buildings are structured to accommodate the use of wheelchairs. There should be a provision for families to drop their children and wards close to the entrance of the building.
Secondly, there should be provision for specialised toilets and bathrooms with chairs and benches for ease of clean up.

Foster Inclusion and Representation in Junior Church
This is very close to my heart. This may be the only opportunity for children with disabilities to mix freely with other children without disabilities.

Some parents do not want their children who do not have disabilities to be in the same room with children who have disabilities. Some believe that whatever medical condition the children have may be contagious, while others believe that their children could copy the behaviour of children with disabilities such as neuro-developmental disorders (This includes medical conditions like Autism, Cerebral Palsy, ADHD- Attention deficit/hyperactivity disorder)

These forms of disabilities are not contagious and it has been proven that a child with neurodevelopmental disorder is more likely to copy a child without any neuro developmental challenge than the other way round.
The leadership of the church should make arrangements to get volunteers or employ caregivers to assist children with disabilities during the church service.

If leaders in a church want the junior church arm to accommodate children with special needs, they will need to train their workers to be knowledgeable and skilled enough to bring out the best in these children. It is a lack of understanding on the part of junior church teachers to put children with disabilities in one class, play video CDs to keep them busy and not teach them bible stories or songs. All children can learn. A teacher simply needs to find a way.

Some parents with special needs children may not want to drop their kids at the junior church (This may be due to the severity of the child’s needs). In this case, a private room can be provided where the parents and their children can stay and watch the church service on a television screen. A pastor can also come in to pray with them. This type of arrangement may not be possible in small churches, but it can work in bigger churches.

Be Intentional About Outreach Programs for People with Disabilities
Reach out to children with disabilities through the ‘Mission Field’ and not only through charitable donations.
Some churches organise several outreaches to spread the good news that God loves them and Jesus died for them. They send their members to the hospital, prisons or orphanages to minister to the people there and provide for their needs.
I am yet to see any Nigerian church that has a department which reaches out to families who have children living with disabilities. It is pertinent to note that these people also need to be ministered to. Some of these families no longer come to church and those that come, lock their children at home, away from prying eyes.

These families also need to hear the good news that Jesus died for them. They need to be told that He loves them and their children. They need someone to share the burden with them. A good number of mothers who have children with disabilities have clinical depression. They live under the burden of guilt, fear, shame and self-pity.

Provide Options for Sign Language and Braille
If leaders in a church decide to reach out to people with disabilities, they should employ the services of a sign language interpreter. For those that desire to go the extra mile, they can provide study materials in Braille, a monthly bulletin and distribute bibles in braille to people who are visually impaired.

Partner With Established Special Needs Organisations
The church leadership can partner with organisations that are already involved in working with people with disabilities. There are numerous non- profit organisations working towards advocating for better lives for people with disabilities.
Workshops, seminars and skills acquisition programmes can be organised to reach this special set of people.

Create A Culture Of Acceptance
If messages about showing empathy and kindness to people who have disabilities can be preached in churches; if the congregants can hear from the pulpit that God loves everyone and so should his children, then maybe, just maybe they would have an open mind to interact with families who have children with disabilities. Maybe these congregants can also allow their children interact with other children who have disabilities.

Teach The Children About Disability
Children who attend junior churches should be taught about disabilities and how to show kindness and empathy to people who have these medical conditions. They should be taught that though these people are different from them, they all want to be loved and accepted.

Source: https://www.bellanaija.com/2018/02/love-without-boundaries-bukola-ayinde-children-welcome/

Love without Boundaries with Bukola Ayinde: See My Child & You Behold My Faith

My friend told me the touching story of a special needs mum. Renovation and expansion work was being done at the church that this special needs mum attended and she decided to make a suggestion. She walked up to the leader in charge of the reconstruction and respectfully asked that a ramp (a sloping surface joining two different levels, usually at the entrance of a building) should be made at one of the entrances to the church hall to make it accessible for people using wheelchairs. The special needs mum had a son who was using a wheelchair. The person she spoke to looked at her and asked if that was supposed to be the most pressing thing on her mind. The leader advised her to go and pray for more faith to believe that her son will be healed.

A friend of mine who has a disability told me that the elders of her church had a meeting with her and admonished her to work on her faith level so she could get her complete healing.

Faith is the assurance that what we hope for will happen and the certainty that what we cannot see exists.

Do not judge me faithless because of the presence of a challenge in my life or my child’s life. God has not made you a judge as to who has faith and who doesn’t. The fact that Mrs. A prayed and fasted and God healed her son and Mrs. B prayed and fasted and her son’s condition did not change doesn’t mean that God loves Mrs. A more than Mrs. B. It doesn’t also mean that Mrs. B doesn’t have faith. The prerogative is still in the hands of God. He is ‘Kabi-o-kosi’ (no one can question him). Maybe it is because he knows the end from the beginning; he sees the bigger picture. Don’t get me wrong, I believe that healing is the bread of the children and I will continue to pray with other mums who have children with special needs.

Have you ever considered that if God could use Moses to lead the people of Israel out of Egypt without first healing his stammering tongue, then God can use anybody, even someone with a disability?   A lot of men and women living with disabilities have done outstanding feats for God and humanity. Yet we ‘perfect people’ are so blinded by what these people living with disabilities do not have that we cannot see the numerous gifts that God has placed in their lives.

Is it not true that most of us have one challenge or the other in our lives? But because these challenges are not visible to others, we claim a superiority of faith to another whose challenge is more visible. Remove the log from your eyes, then maybe you will be able to see the speck in mine; for with the same weight you use to judge others, you will be judged.

My husband once gave this analogy: If you prayed to God for your dream job, what would you do in the interim before you got it? Won’t you keep working at whatever job your hand finds to do while you are waiting for the big job?

Can’t the same analogy apply to my child? While I am stretching my faith, sowing seeds and believing in God for her healing, can I at least use my baby faith to care for her? Can I love her passionately without any excuse or hindrance? Can I teach her in the way of the Lord while believing she will be completely healed? Should I be judged as faithless while doing this?

It takes faith to keep taking your child for therapy week after week, month after month and you can hardly see any significant improvement, yet you believe that down the road, something positive will happen. It takes faith to teach a child whom the doctors said cannot learn, how to read and write.

Having a child with a disability has taught me a lot about faith.

When next you see my Nimmy, my special needs child, my sunshine, take note that you behold my faith!

Love without Boundaries with Bukola Ayinde: My Faith & My Child {Part II}

When my daughter Nimmy was just a little over a year old, her paediatrician recommended that we take her to a neurologist for an assessment.

She was assessed by a professor at the Lagos University Teaching Hospital. At the end of her assessment, she was graded as a stage 5 (stage 1 being least affected by cerebral palsy and stage 5 meaning most affected) child. My husband and I were told she would never be able to do a lot of things.

We were told she might never be able to walk, or talk or sit independently, among other things, but God brought people into our lives who encouraged us not to give up on our daughter.

I remember Nimmy’s first special needs therapist, Ms. Ijagbemi who persistently asked my husband and I to look for a school for her, and she provided trained caregivers to stay with Nimmy in school. Then there was Mrs. Okereke who accepted Nimmy into the very first school she attended, and Mrs. Ngwube, her current proprietress.

Within a space of five years, we have had numerous caregivers, lesson teachers, speech therapists, occupational therapists and physiotherapists who have in one way or the other made a positive impact on Nimmy’s life.

After close to five years of Nimmy attending school and learning to read, she exceeded our expectations. At age four, she could identify all the 26 letters of the alphabets and associate them with objects. She could count from 1 to 50 and also count backwards up to 10. She understood what addition and subtraction meant.

I remembered the last children’s party that held in her school. The teacher asked the children a question, ‘What are the things that help a plant to grow?’ She took the microphone to Nimmy and my baby shouted, ‘water’. The other parents at the event were pleasantly surprised. They clapped and cheered.

I shared Nimmy’s progress story on Facebook to encourage other mums with special needs children. I had some feedbackfrom some of those mums. Some of them were tired of taking care of their special needs children; others asked if I knew any boarding facility where they could keep theirs.

A few days after I posted that article on Facebook, I came across a complaint (posted on Facebook) by a woman who has a child with special needs. She took her daughter for therapy at a general hospital in Lagos. While sitting down, waiting for her turn to see the physiotherapist, she overheard a group of women talking about their experiences of taking care of children with disabilities. One of the women said she wished her son could die. Another said no one invited her to parties anymore and she didn’t socialize because people no longer wished to mingle with her. Another mother said she locked her child at home, away from prying eyes whenever she went out. A lot of people commented on that post and labelled the women as wicked and heartless. I laughed when I saw the comments.

Our society which includes the church and the mosque has labelled these children as demonic. Some say they come into the world as a result of their parents’ sin or through spiritual attack on the parents’ or the children. These children are usually stigmatised in the public and sometimes in their own homes.

Stigmatisation is real. It is as real as the air we breathe.

Couples who have special needs children face pressures from extended family members. Members of the husband and wife’s family may say they do not have such children in their lineage. This may lead to a breakdown of peace in the home and sometimes to separation or divorce. Oftentimes, the woman is left alone with the responsibility of caring for the child. In the society where I grew up, a good child belongs to the father and when a woman has a child that does not fall into that category, that child becomes her cross to bear.

In some cases, the mother of the special needs child may be asked by her husband to get rid of the child, if the marriage is to survive. The fortunate child could go to grandma’s house, the less fortunate one ends up in an orphanage or a home for children with disabilities while the most unfortunate one is ‘quietly aided’ to go back to the creator.

The couples who choose to weather the storm of their children’s disabilities and refuse to hide them face challenges. Some of their friends may not want to associate with them. They may insinuate that the children were used for money rituals and made disabled to increase the wealth of the parents or the parents requested for the children through diabolical means.

A child with a disability may not be invited for birthday parties or sleepover at friends’ homes. I remember once when my younger daughter was invited to a birthday party by a family friend and I told the woman calmly that I was coming with everyone in my house for the party. My children, their nanny and I went to the party and had fun.

Choosing a good school for a child with special needs is not a walk in the park. It takes humility and a refusal to give up. After a few doors were shut in my face, I had to pause and reassess my approach to the search for a school for Nimmy. Some heads of schools said they did not have any vacancy and the other schools that had vacancies were very expensive. I spoke to a friend who is a special needs teacher and she referred me to a mother who had a special needs child living in my neighbourhood. This mother recommended the school her daughter was attending and that was how Nimmy was admitted into a school.

One would think that if a special needs mum’s home is troubled and she has been rejected in the public, then her soul should find solace in the house of the Lord. Yet some churches are not built to welcome people with disabilities. It’s not so much the accessibility of the building but the lack of warmth and empathy for people living with disabilities. Some churches have categorised children with disabilities as being under demonic influence.

The truth is that a child doesn’t need to have a disability to have a demon. Children who develop normally can have demons too. In fact, I have been to some churches and seen lovely, healthy looking sisters and brothers fall and roll on the ground and manifest different spirits during deliverance sessions.

It is true that Jesus healed many who had demons but not everyone He healed was possessed with demons. Yes, the Bible says that the origin of all diseases lies in sin. The original sin was committed by Adam and Eve and not my husband and I. Please note. I am not against prayers. I believe in prayers. If you can pray for your child that has malaria, then pray for the child that has cerebral palsy and do not say the child is possessed by a demon.

Dear Worship Leader,
I know you mean no harm and all you want to do is to motivate people in church to praise God when you say, ‘If you know that you woke up this morning and you could see, you could hear, you raised your hands and they moved, you raised your legs and could walk, jump up and shout hallelujah.’ In the past, this motivated me to jump up and praise God. Today, I have a child with movement disability and I have been given the privilege to look through a different window and to ask the question, ‘Is praising God the exclusive preserve of the physically fit?’ Because I have checked the Bible and it says, ‘Let every living thing praise the Lord.’

Dear Special Needs Mum,
God loves you and your child. Nothing, not sickness not pain, nor death can separate you from His love.

Dear Church Leaders,
The house of God is supposed to be a safe haven for the desolate and afflicted soul. Do not add more burden on the burdened.

Source: https://www.bellanaija.com/2018/01/love-without-boundaries-bukola-ayinde-faith-child-part-ii/

Love without Boundaries with Bukola Ayinde: Celebral Palsy & How It is Different from Autism & Down Syndrome

When I was much younger, any time I met people who had cerebral palsy, a condition which is often characterised by walking in a wobbly manner, I usually kept a distance, because I felt they could have a mental illness such as schizophrenia. Such ignorance! However, today, I know better.

In this article, I will explain the differences between Cerebral Palsy, Autism and Down Syndrome.

One beautiful thing about children with Down Syndrome is their sweet spirit. They are very loving people. Sometime this year, I was privileged to visit an inclusive public primary school in Lagos, Nigeria. These are schools that admit children living with disabilities. I entered a class that had children with m

Love without Boundaries with Bukola Ayinde: My Faith & My Child

When I got my daughter’s diagnosis about four years ago, I was afraid and I felt like a disappointment to myself and to God. I felt that one of the proofs that I was in right standing with God was to have perfectly healthy children, without any problem whatsoever.

I didn’t want to attend my home church where I was known. I didn’t want people there to know about my daughter’s condition. I mean, I couldn’t remember if I ever saw children with any form of disability in church, so it was a rude shock for me to find out that my child belonged to that rare class of ‘imperfect people.’

My husband and I prayed but it seemed to me that God was silent on the matter. A lot of emotions went through my mind like fear, anger, self-pity and bitterness. I became depressed. I took my child from one deliverance church to the other, looking for a solution.

I remember during one of such deliverance services, I was rebuked by the head pastor, because I had braids on my head. I was told that such a carnal act would not make my prayers to be answered. I was given a lot of rules and regulations. I was told to bring my daughter every week for deliverance until she had been fully delivered from what ailed her.

I also remember visiting another church for prayers on the recommendation of a friend. I remember that day clearly. It was a wet day; it had rained the previous night and it was still raining that Sunday morning. My husband had gone to our home church and because I was pregnant at that time, I told him I wanted to stay at home. After he left, I put my daughter in her car seat, along with her nanny and drove from Lekki to Festac town in Lagos State. On our way back home after the church service, everywhere was flooded and I almost drove into a ditch. That experience left me thoroughly shaken.

When I got home from Festac, I sat down and asked myself a crucial question, ‘Oluwabukola, what exactly are you looking for?’ From that day, I decided that I will not take my child from one man of God to another or from one church to another. I decided to be my child’s prophet and speak into her life. I felt the peace of God flood my heart after I took that decision. For he said in His word, ‘Come to me all yea who are burdened and heavy laden and I will give you rest.’
I learnt to trust God and he gave me peace of mind. He gave me inner strength that I never thought I had.
I began to attend my home church with my child with no intention of hiding her. Yes, there were stares. People did not say anything to me directly but their eyes spoke volumes.

I remember a friend in London who told me to think deeply, repent of my sins and ask for forgiveness and God’s mercy. All these I took calmly because I had made my peace with God about my child.

I had my second baby shortly afterwards and as soon as she turned one, she started attending the junior church. But I kept my first daughter, Nimmy by my side in church for three years. The church I attend has a section for nursing mothers in the auditorium so I would sit with Nimmy during the service. I was too worried to let her join the junior church. I was troubled with many questions. Who will love my child in the junior church? Will they accept her? Will the other children play with her? When she was three years old, a friend encouraged me to let go of my fears and give it a try.
I was so happy when Nimmy was accepted at the junior church. Initially there were a few hiccups but everyone adjusted to her special needs and peculiarities. My initial experience at the junior church made me realise that standing up for Nimmy was going to be a part of my life. The teachers in her class were particularly nice to her and I can only thank them but God will bless them abundantly.

In 2017, the church I attend opened a satellite centre in the Lekki area of Lagos and I started attending it because it was closer to my home. My husband who is a worker in the main church at Ikeja remained there while I attended the satellite centre with the kids and their nanny.

The junior church in the satellite centre was smaller and there were less teachers and volunteers. I stayed with Nimmy in the adult church for close to seven months while her younger sister attended the junior church.
Eventually I got a lady who stayed with her at the junior church. This lady stayed for two months and left when she stopped attending the church. I was determined that my daughter was going to remain at the junior church, so I decided to stay with her there. The days when my nanny was off duty and I could not cope with the kids, I stayed at home.

One Sunday morning, after I had just employed a new nanny, I took Nimmy to the junior church and she did not want the nanny to carry her. I decided to sit with her, but one of the teachers at the junior church offered to take care of Nimmy throughout the service. My heart truly blessed this woman. She was an example of someone who lightened my burden.

Going to church, for a special needs mum, takes a lot of effort and guts. A special needs mum worries about every little detail of the trip to church and imagines all the things that could go wrong. For every junior church teacher that has been a blessing to Nimmy and every other special needs child, I say thank you and may you be blessed in all you do.

Some junior church teachers do not accept special needs children into their classes while others accept them, but relegate them to one side of the room. This may be done not necessarily out of stigmatisation but out of ignorance.
Some churches have separate Sunday school classes for special needs children. As good as this may sound, it also has its shortcomings. I am of the opinion that unless a child is severely disabled or a danger to others, he or she should be included in the regular class with other children. A lot of children with special needs in Nigeria are often locked at home so this may be the only opportunity for them to mix with their peers.

Dear Special Needs Mum,
Seek to know the Lord and you will find Him and He will give you rest. Like he gave me.
Note: Special Needs Mum in this context refers to a woman who has a child with special needs.

Dear Church Leaders,
The Lord says, ‘Let the children (special needs children included) come to me. Do not hinder them. Please create the atmosphere for these precious children to thrive within the walls of the church.

Source: https://www.bellanaija.com/2017/12/love-without-boundaries-bukola-ayinde-faith-child/

Love without Boundaries with Bukola Ayinde: Strength For Adversity

My name is Bukola Ayinde and I have a little daughter who has cerebral palsy. Four months after I had her, I noticed she could not lift up her head. Usually babies are able to do this at about four months. I was not concerned because she was my first child (I didn’t know much about babies or their development milestones) so I didn’t know there was anything wrong with her. I took her to the hospital for a routine check and one of the nurses called me aside and said, ‘She should be able to lift her head up by now. Something is wrong. I advise that you mention it to the doctor when you see him today.’ When I saw the doctor, he told me that my baby was delivered as a premature, so I should be patient as it takes a while for premature babies to catch up with their peers.

I went home with my baby, Oluwalonimi, (fondly called Nimmy) hoping and praying that all will be well. I was already a registered member of an online group called Babycenter. I read the posts on baby milestones and head control. The more I read, the more I got worried, but I chose to deny what I saw.

Some months later, I visited my husband’s aunty and she insisted I go back to the doctor and demand that tests should be conducted to determine if all was well.

Finally, at eight months, four months after my initial complaint, the doctor ran a series of tests on Nimmy’s blood, urine and faeces.

She went to the ophthalmologist and audiologist where her eyes and ears were checked. An MRI (Magnetic Resonance Imaging) was carried out to provide a detailed image of her brain and other body tissues.

I was tearful, worried, scared and emotionally drained as she went through the tests. I remember when I went to the military hospital in Yaba to have her ears checked. I went with my mum and a nanny, as my husband had to go to the office. While we were waiting for Nimmy’s turn to see the doctor, a little boy whose mother sat beside me just finished his test. Suddenly, he went into a fit, screaming, convulsing and crying at the same time. His mother was scared and so was I. I asked her what was going on and she said she didn’t understand. The audiologists were walking to and fro and no one paid attention to the boy or his mother.

I advised her to walk up to one of them and ask for help. She walked up to a young man who had attended to her at the beginning of the procedure and he nonchalantly told her that the boy would snap out of it soon. He said some children react to the anaesthetic drug given to them during the medical investigation. His voice was so cold and emotionless that I was shocked. This lackadaisical attitude is unfortunately, quite common in government hospitals.

When it was Nimmy’s turn to see the doctor, I asked many questions and the anaesthetic doctor looked at me in disdain with an expression that said, ‘I know your type,’ but his attitude didn’t bother me one bit.

One of the doctors shaved part of her hair and attached wires from a computer to her scalp and ears while she slept. It was such a scary moment. I kept praying that all will be well. As soon as the audiologist had finished examining her and all the wires were removed from her body, I was told to carry her from the examination table. Nimmy was still sleeping.

As soon as I sat down on a chair in the waiting room, a woman rushed in, her son in her arms. The doctor had examined him earlier and she had left the building while Nimmy was undergoing her procedure. The boy was jerking. This mum explained that he was asleep in the car but as soon as he woke up, he started jerking.

I looked at them and I looked at my child. I looked at my mother and I could literally see fear in her eyes but Nimmy was still sleeping.

When it was time to leave, Nimmy, my mum, the nanny and I got into the car. Whenever my mum is scared, she gets angry. At that moment, she looked at me and started shouting, ‘Why did you bring Nimmy for this test? Who told you she cannot hear?’

I also got angry and shouted back, ‘Tell me, how could I have known that these things would happen? The doctor said I should take her for an audiology test.’ When we both realised that shouting wasn’t going to get us anywhere, we calmed down.

My mother looked at Nimmy and began to pray that nothing bad will happen to her. It was a horrible experience to watch the two little boys convulse. My daughter was still fast asleep in her car seat. My mum and I kept looking back to check if she had woken up. When we got home, she was still asleep and we became worried. I took her to the bathroom and gave her a warm bath. That was when she woke up and smiled at me. I was overwhelmed with joy. My mum looked at me, looked at Nimmy and said, ‘Bukola, no more test. God will help us take care of her.’

I was happy that Nimmy had already done the MRI scan before going for hearing test. I decided that I wasn’t going to put her through another awful experience again.

My husband and I waited for the test results. That waiting period was not an easy one. I kept praying, hoping and confessing that the events were part of a bad dream from which I would wake up and smile. Then Nimmy’s paediatrician called my husband and I for a meeting and told us the results.

The doctor said all the results did not show anything abnormal. I was full of gratitude to God but I looked at the doctor’s unsmiling face, and I knew I had not heard it all. He went on to say the words that left me devastated.
‘Notwithstanding, from our physical examination and her medical history, we are still going to classify her as having delayed milestones. We are going to start therapy for her as one who has cerebral palsy. We recommend she see a physiotherapist immediately and let’s see where we go from there.’

Most mothers have dreams of what they want their children to become in life, and I was no exception. When the doctor told me about my daughter’s health challenge and said there was no cure, my world came crashing.

I remember watching the Disney Junior channel and I saw children jumping up and down a trampoline and I cried. I cried for Nimmy; I cried for myself. I felt she would never be able to take part in such activities. I imagined my Nimmy would miss out of a fulfilled childhood.

During this period, I went through different stages in my approach to handling the situation.

Stage one was the denial stage. I rejected the diagnosis. I told myself it was not my portion. I refused to seek for help as if by doing this, I would wish the diagnosis away.

Stage two was the desperation stage. When I was faced with the reality of the situation, I took my child from one church to the other, looking for a solution to the problem. When the expected solution did not come, I went into another stage: the depression mode.

I became depressed and asked many questions. Why me? Why is this happening to me? What have I done that God cannot forgive?

Some mothers stay at each of these stages for years, while their special needs children require specialised care.

As a mother, if you receive such a diagnosis, it’s okay to cry. It’s okay to mourn the loss of the type of child you wanted and didn’t get. It’s not a sign of weakness or unbelief. King David in the Bible and his men wept until they had no strength left to weep. These were men of valour; they had fought many battles and won. Yet when they heard that their wives and children were taken captive, they wept. The Bible records that David’s men were bitter in the spirit and they wanted to stone David who was their leader. However, David encouraged himself in the Lord and if you read the story further, David and his men went after the captors and they recovered all.

Dear Special Needs Mum,
It is important to arise and find help for your child. Take action in spite of your fears and doubts, in spite of the questions you may never get answers to because there are decisions to be made and a child to be cared for. Remember, early intervention is important in managing any medical condition.

To you, neighbour, friend, church leader and school teacher, do not judge couples who have children with special needs, implying that their sin made them have a child with a disability. Do not run away from children with special needs or stop your children from playing with them. Remember, God loves them, just like He loves you.

Kindness is a beautiful gift that blesses both the receiver and the giver. And guess what? It’s not expensive.

Note: Special Needs Mum in this context refers to a mother who has a child with special needs.

Source: https://www.bellanaija.com/2017/11/love-without-boundaries-bukola-ayinde-strength-adversity/