Perhaps if we had had children before him, we would have noticed earlier that something was amiss, but as it was, Enitan was our first child.

As his name depicts, there was a story behind his birth. 

We had gone through a long period of infertility and had been told by doctors that we could not have children. The medical evidence to support this opinion seemed overwhelming, but as practising Christians we believed that in every area of our lives, God, not man, has the last say in our lives and so we trusted and believed God for children.

Many years (and numerous miscarriages later,) our wonderful, beautiful, perfect son was born. All the pain and agony of the former years were forgotten as we stared in awe at our miracle baby in the delivery room.

He had so much hair, thick, curly and black and the longest eyelashes I have ever seen on a boy; gorgeous, the spitting image of his dad.

And so we settled down to the business of caring for our new son, fussing over anything and everything that concerned him.

Despite being pretty well endowed in the breast department, I was unable to produce sufficient milk; I would use the breast pump for about an hour and barely manage to produce 4oz. In the end we decided he was not getting enough and decided to put him on formula milk. 

The minute we did this, we had problems. He developed horrendous constipation. Four or five days would pass without a bowel movement and when he finally did he would scream in pain and he would bleed. None of the drugs given him for his constipation worked and in the end even though he was so young, we were given suppositories to insert in his anus as that was the only way he could go.

We began to notice other things: His stomach was always extended; he would sweat profusely during the night and vomit in his sleep. He didn’t seem to be able to keep his milk down and was prone to projectile vomit.

He also seemed a very unhealthy baby. He was always catching one infection or the other and had recurrent ear infections, which were treated repeatedly with antibiotics. (A huge mistake we later learned).

A Hyperactive Baby

As he grew older we began to notice other things. He was hyperactive. He would not, seemingly could not, sit still. He did not seem particularly interested in his toys, rather than play with cars appropriately, he would turn them on their side and spin the wheels for long periods of time in an almost trance like state. Rather than build with his building blocks, he would line them up in a straight line and would cry if we moved them. He stared endlessly at bright lights and would sit silently looking out the window for ages. He walked on tip-toe and seemed to look ‘through’ us rather than ‘at’ us.

When we put him on solid foods, he would choke. He did not seem to be able to chew and his constipation grew worse. All his milestones were delayed. He didn’t crawl for ages and did not walk until he was 16 months old. If he was excited he would jump up and down and flap his hands. He made strange, deep guttural noises and touched different textures in a manner that seemed weird. He sometimes appeared deaf. You could stand in front of him and call his name and he would not respond, but would then respond disproportionately to quiet background noise.

At about 12 months he started talking and had some phrases, but at about 18 months, he seemed to lose them and stopped talking. Despite these, Enitan was an extremely placid, happy child with a smile that would melt the hardest hearts and never any trouble. Still there was this nagging feeling that something was not quite right.

Then one day it all came to a head: I read a newspaper article where the then minister for health was accusing the medical profession of labelling an increasing number of children as being autistic. Later in the article she described how she had visited a special school and only 2 or 3 of the children she had met had the characteristic ‘gaze avoidance’ that autistic children are supposed to have. 

‘Gaze avoidance’? It suddenly hit me….

Until this time I knew little about autism or its characteristics. It was however topical at the time because some parents had said the MMR (vaccination) had caused their children’s autism. All I knew was that it was a condition that you heard about, out there somewhere, a tragedy that blighted other people’s lives, but could never, ever come near you. There was no way God would let that happen….. 

But the niggling feeling within me grew stronger. I was scared to say the word, as if by saying it I would be giving it creative power. But in the end I was forced to share what I had read with my husband. I ended the conversation by stating I had not mentioned anything earlier as I had not wanted to scare him. It so happened that he had not mentioned anything to me for the exact same reason.

He then shared with me how he had taken Enitan to the park recently and how he watched all the other children who seemed to be so inquisitive about their world, whereas Enitan did not seem to be interested in anything, but swinging back and forth over and over.

That night we decided we would both spend a week researching autism and then compare notes. We assured ourselves that there was obviously no way that he had autism, but we would do it all the same.

All I can say is “thank God for the internet” that gave us all the information we needed. After our week of researching it was clear that he had autism and of course our world fell apart. We then had to get a formal diagnosis.

People think that the western world knows a lot about autism: That is not necessarily true. Most health professionals still do not know how to recognise autism and even where they do, they are reluctant to pronounce it to the parents due to the devastation it will bring. Rather they may say “he’s just a slow developer; he’ll talk soon, just give him time”.

Time is the one thing that an autistic child does not have…. You have a window of opportunity between birth and age 5 or 6 while there is still some brain plasticity that can be moulded, but you need intense intervention to do so. That’s not to say an older autistic child cannot be helped, but it becomes harder as they grow older and their bizarre behaviour takes root.

Our doctor referred us to a paediatrician who thankfully was not only very versed in autism, but was up to date and open to trying many of the interventions new research was showing could greatly help these children, such as ‘Applied Behaviour Analysis’ , (otherwise known as Lovaas therapy), bio medical and diet intervention, etc.

Once we had our diagnosis, there was nothing to do but to grieve. The grief seemed endless for both of us and we of course grieved in different ways. Despite his grief, disappointment, fear for the future of his son, my husband’s love and commitment to our son and our marriage never wavered for a second and we set about the impossible task of getting on with our shattered lives, making major life adjustments, (I had to give up my job to care for our son full time). By this time we had had a second child and so we now had an added financial strain.

More importantly, we began to put strategies in place to help our son. I had read somewhere that it is vital to keep talking to autistic children, so they have less opportunity to disappear into their own little world. I would talk to Enitan all day long, taking him with me all around the house. He was not to be left on his own for more than 30 minutes in a day. We vocalised everything. “Enitan is going up the stairs,” “Mummy is holding a glass.”

We got a speech therapist who gave us strategies to make him talk. She explained the importance of non verbal communication, such as eye contact, so when talking to him we would put our finger under his chin to make sure he looks at us first. “Look at me” became the most used phrase in our household. She advised us to break language down to the barest minimum, no long sentences, only clear direct speech. “Sit down”, rather than “can you go and sit over there please?”

We had an occupational therapist who helped with coordination etc. There was a constant stream of strangers coming in and out of our house. We are a very private couple. It was intrusive and exhausting, but necessary. At this stage we weren’t really concerned with what they were doing per se, we just wanted to make sure he got used to interacting with other people.

We were told it was important to make interacting with people fun. There were lots of tickling games, over the top praise, “Yeah, Enitan said ‘cup’.” “Well done Enitan! Good boy”

We started an intensive therapy programme called Applied Behaviour Analysis. This is where tasks are broken down into bite size pieces and once one part is mastered, they go to the next stage. 

We also changed his diet. 

There is a lot of debate about what causes autism, some say it is genetic, others that it is caused by vaccination etc, but there is an autistic school of thought that says it is caused by a faulty digestive system (often referred to as ‘leaky gut syndrome’) . This is where because the gut is faulty, digestion is not going on the way it should do, peptides cause the gut to begin to leak and food that should be digested begins to enter the blood stream and carries it to the brain which interferes with brain function. I personally believe there is a genetic disposition towards autism, but identify totally with the leaky gut theory as it is characterised by constipation, etc which were all present in my son’s infancy.

In order to rebuild the gut, certain bio medical interventions had to be employed. I learnt a new language of enzymes, amino acid, fatty acid, IQ (a brand of fish oil), zinc etc and learnt the essence of these on brain function and child development.

Our friends were fantastic. They began to research on the topic and would send us any information they could find (and still do). I read Lyn Hamilton’s book, ‘Facing autism’. It was an eye opener and very informative, as well as Catherine Maurice’s excellent book, “Let me hear your voice,” which gave me hope and introduced me to ABA. Catherine had 2 children on the autistic spectrum that both ‘recovered’ and have gone on to be indistinguishable from their neuro-typical, “(normal)” peers. I also read ‘Sonrise’, a book by Barry Kaufmann whose son also ‘recovered’ from autism through a similar programme.

Today, Enitan is a very happy, affectionate, handsome 8 year-old boy. He attends a special school for 3 days a week (a painful decision we made after he attended main stream school for 2 years). It was clear he was going to get more and more lost as he did not have a basic understanding of the work, nor the ability to carry it out. Neither was the school able to cater for his particular needs).

He still continues his ABA programme at home for 2 days a week and it is to the principles of this programme that I attribute the majority of his progress.

Although he is now verbal, his speech is much delayed, but his vocabulary is broadening all the time. His self help skills are also improving. He can get his own cereal and needs very little help to get dressed. He can also carry out basic chores.  

What does the future hold? Only God knows. In the early days of his diagnosis I nearly drove myself insane by dwelling on questions like that. “How will he cope?” “Will he ever have any friends?” “Will he ever get married?” “Will he be able to work”? Thankfully we have come to a place where we can use our time concentrating on the things that are within our power to affect and are productive for our son.

First of all, we love him unconditionally and ensure that we enjoy every moment that we can with him. We have made a decision to concentrate on the wonderful things about him. We will do our best to teach him independence skills and make as much financial provision as we can for him, for after we are gone…. The rest is in God’s hands.

Writers note: Writing this article has been a long and painful journey, but it had to be written for the sake of the thousands, (yes, thousands) of Nigerian parents who have children with disabilities and are held captive by the fear of “what will people say?”

Unfortunately in our society, ‘Image is everything’. Seemingly, we must live in the right neighbourhood, drive a certain car, be persistently immaculately dressed and we must be able to boast about our children at social gatherings. After all, they are all part of the image.

So where does that leave a family with a child with a disability? At best marginalised, at worst totally outcast.

I cannot tell you the endless stories of parents keeping their disabled children indoors and hidden for years on end for fear that someone might know they exist. One woman recently told me of how her cousin was kept in a cage that was not big enough for him to stand up in until he died; another of a friend of hers in Nigeria who has non-verbal autistic twin girls and calls her everyday from Nigeria crying and depressed.. She says she can’t take the children out because people are laughing at her. They do not go to school….

I will always remember a story my father told us of a family we knew who had a physically disabled child. One day when my father asked after the child, the father of the child confessed that in the end they had murdered the child one night. MURDERED THEIR OWN CHILD. I understand this is not uncommon.

We must change the way we think. The fact that a child has a disability does not make them a write-off or less worthy of love or of a life. It may mean that some of the dreams we dream for our children will have to die or we may have to dream a different dream and if we must  lose some friends and family along the way because of them, so be it, but  as parents we should be prepared to climb any mountain for our children. They are worth it. At least I know mine are.

Bimbo Clement is a practising Christian. She lives in London with her husband and two sons. She runs an Employment Law consultancy and is founder of Black Businesses, (a business group for black professionals). She can be contacted at bebe_clement@hotmail.com

Trust me; it’s not always true that mothers know best, at least not when it comes to matters of the heart! My mum thought she knew what was best for me when it came to the choice of who I should marry, and then she

robbed me of a chance to walk up the aisle with the man of my choice when I was 30. 8 years on, I am still single!

May mum’s sweet soul rest in peace but on every anniversary of her death I can’t help but remember her role in rendering me husbandless. I sometimes remember her with bitterness. They say time heals every hurt

but not the kind of hurt that came between me and a fantastic opportunity to be the lawfully wedded wife of a man I truly loved. Tribalism and ethnicity shall always be the bane of this country even though I do admit that things have changed for the better. My parents were very tribalistic, my mum especially! I could always get dad to see reason

but not mum; she would always say things like ‘omo ibo’ each time she had to talk about my friends from the east. She would spit out the words the way oyinbo man would say ‘nigger.’ Dad got tired of reprimanding her and just let her be. Mum was very domineering and no one  won in an argument with her. Trust my luck to fall in love with an ‘omo ibo.’ Christopher was every woman’s dream guy; tall, humorous and… intelligent as I discovered later. I was crazy about tall guys, perhaps because I’ve got heights too. He was a confident guy; his confidence

oozed forth and being confident too we seemed a good match for each other. Our meeting isn’t anything out of the ordinary; we met at a party and having given him all the signs so he could ask me for a dance and he still didn’t respond, I decided to to ask him. Surprisingly, he jumped at the chance and later told me that he’d have his eyes on me all evening. “You were the first person I noticed when I walked into the party” “You’re kidding me” I asked flirting with him as we danced “Yep, I had my eyes on you but you beat me to it. That’s good because I

might still be sitting there and planning my moves”

“Count today as your lucky day then” I teased

“You’re tall…my kind of woman”

With music over, he led me back to my seat and pulled one for himself. We chatted like old friends and with party over he asked me for my number. “You will call?” I asked in a faint voice “Try and stop me” he grinned

He did call and that was the beginning of a romance that that bloomed and blossomed. He was my best kept secret (from mom) although my siblings and close friends knew all about us. The few times I tried to have an intimate time with mum, she’d upset me by her caustic remark which ended with; “Don’t bring omo ibo to this house o” and then a long hiss!

“But mom…”

“I know you are going out with one of them, I have seen you rolling your eyes and yet you have not brought him home. Is it not because he is omo ibo?”

Well that was it! But after Chris and I had dated for over 9 months he surprised me when out of the blue he asked when I would take him to meet his future parents-in-law?.

“Let’s take this relationship a notch higher or don’t I qualify”? I was over the moon and planted kisses all over his

fine face. “Of course you qualify ….!” I had run out of excuses! So one day, I happily (with a lot of apprehension) told

mum, dad and everyone else that I was bringing Christopher home. “As long as he is from our place, remember that you are my first born” was all she said as she gave me one of her infamous “Sheoo” hisses.

Later, I took my case to dad who simply said to me “you know your mother and her trouble…” dad was a real disappointment; he never was able to stand up to mum. Where did that leave me?

It was time someone dared mum, so I brought Chris home! The humiliation was too much to bear as mum was at her nastiest. She asked Chris questions in Yoruba even though she knew he was Ibo! Chris took it badly and that affected our relationship. Gradually, we just drifted. I thought mum herself would come around as I walked around the whole house like a jilted bride. But not mum…and then fate played a cruel one on me…

Mum died in an accident! Everyone thought that after mourning, Chris and I could patch it up but I didn’t think it was the thing to do since mom never approved. With the way mum spoke about Ibos I wasn’t sure she would not come back to hunt me If I married Chris. Dad had given me the GO-ahead but I felt like telling him what a disappointment he was to us his children. But then I felt he already sensed my resentment of him.

At 38, I am still single and searching…Chris? I heard he got married!

The story you’re about to read may come across quite like some fictitious

creation, especially because of its spooky parts; but make no mistake about

it, for this is as real as as it gets.. It is the lamentation of a young girl in one

of Nigeria’s ivory towers as told to her close friends in the dying minutes of

her life. Another story of wanton sex–capade ending on a “sore”note,

Tolani – that’s her name – told her friends how she wished she had lived her

life differently and stuck to her life-long goal of obtaining a university educa-

tion as a means of combating the poverty that had engulfed her from child-

hood. For effect, we serve you her story in the first person narrative.

Hope! Does that word really exist? For me it doesn’t. I

have reached the end-point of my life. There is simply

nowhere for me to go from here. I’ve debated this

within myself for a long time before deciding to come

out with it. I’ve come to the conclusion that it’ll do no

good to keep it to myself. At worst, somebody out

there will learn from my mistakes and hopefully

decide against toeing the line I unwittingly toed, because right now I have

reached the point of no return.

My name is Tolani. I am 25 years old. I am tall, slim and good-looking. I come

from a very poor background. My father was a retiree from one of the govern-

ment ministries and the gratuity he was paid was not enough to feed the family.

My mother was a petty trader. Although we had little materially, we were rich

morally and spiritually. My father taught us to be contented with the little we

had.

I went to the primary and secondary schools my parents could afford, but

because I was intelligent, I soon became one of the best students in my class in

my primary and later secondary school. Right after my school certificate exami-

nation, I passed my JAMB and gained admission into one of the higher institu-

tions in Nigeria. Owing to my resolve, I got serious with my academics right

from day one at the university; and my results were there to show for it. My

grades were very good and I was happy with myself. I closed my eyes to all

things that could distract me academically. However, my days of academic

glory were numbered.

In my third year in the university, I met a clique of girls and we became very

close. I began attending parties and the big clubs in town. Soon I became a

party freak. There was no party on or off campus I was not invited to; and I

made it a duty to attend them all. As a result, my school work suffered. I

scarcely attended lectures and would rather collect any of my classmate’s notes

to photocopy. As the first semester wound down, I knew my results would be

bad alright but I was not ready for what I got.

I failed all my courses and by the time my GPA was calculated, it had fallen

below 1.0. I also got a written warning from the university authority to either sit

up or face expulsion. I was devastated. I used to be very good in my first and

second year. So I knew I had to sit up. I made up my mind to get serious with

my academics because I could not live with the disgrace of expulsion.

But before long, I began to miss the thrill of night life. I began to drink heavi-

ly. I also smoked and even had two abortions along the line. I started getting

involved with older married men. I dated for the money and because my

friends were doing it. I needed to keep up with my lavish lifestyle and to

‘belong’. I didn’t want to be left out. I became a top ‘aristo’ babe and I had

everything I wanted financially - bags, shoes, clothes; even a car. I was a big

chic. Thanks to my ‘runs guys’ and my older boyfriends. I did a lot of dirty

things for money. I was a prostitute in the real sense of the word. Of course, I

justified my actions since I used part of the money to cater for my parents and

my siblings. They were bothered about the source of my money but I told them

that I was working and schooling at the same time.

On one of my usual weekend gigs, I met a very rich chief. He came in the

company of another girl but something happened and the girl left the party

early. I found myself sitting next to him and we started gisting. We spent the

night in his guest house. Hmmm! That night changed my life entirely. Chief

removed his clothes and what I saw horrified me. His body was covered with

terrible sores. He offered me money that was really mouth-watering if only I

licked all his sores. He said that I would die if I refuse since I had already seen

them. I guess that was a threat. But, I licked the sores anyway, collected the

money and left.

After that night, I never felt normal again. I became sick and started throwing

up continuously. I was getting weaker and slimmer, and kept having terrible

nightmares. I went to the hospital to see if they could diagnose my problem,

but the doctor found nothing wrong with me. I wasn’t surprised though. I then

turned to a spiritualist who told me that the legion of sores on the chief, which

I had licked was the cause of my sickness. He also bluntly told me that there

was no cure for my illness. Death was the last thing on my mind when I licked

those sores, but here I am, in my prime, struggling with death. It’s very painful

to think that I have nothing to show for my little sojourn on mother earth. I will

never graduate from school like I always dreamt. I will never have a second

chance to correct the foolish mistakes I made because I have only a few weeks

to live. So I’ve decided to tell my story to the world, to learn from it. Please

don’t feel sorry for me. I got what I deserved.

*Tolani died a few weeks after telling her story.

Neglected by mum, abused by an uncle and battered by dad… Kate tells the gruesome story of her childhood in an emotion-laden voice.

My name is Kate (not real name) and I am a student at the University of Lagos. For the sake of anonymity, I’d rather not disclose my department or level, because the story I’m about to tell is so embarrassing that it could get me stigmatised among my peers. Even as I speak, my experiences in life affect me, and have greatly affected my relationship with people, especially men. It is a story of total childhood neglect, for which I would blame my mother; gross child abuse and paedophilia, for which my animalistic uncle takes the blame, and childhood brutality, for which I will blame my father most.

I grew up bearing another man’s name (my mum’s husband’s) until I was about 17, when I was challenged by someone. All along though, I always suspected that things were just not right with me; you know, the usual kids’ feeling of neglect; of not being welcome or treated equally with the other kids; of not being allowed to watch TV like other kids, of not being bought Christmas clothes like the other kids…. My mother, probably because of the way she grew up - she was also a product of a broken home-never really cared about me. The ultimate for her was therefore to protect her husband and marriage, even at my own detriment. It was also clear that she was not comfortable having me around, most probably because I reminded her of her former husband, my father, whom she had come to hate.

There was this uncle of mine; he’s a very popular figure now; it was in his house that I spent most of my free time. At other times, I also stayed at my aunt’s place. Because of my mother’s unwelcome attitude, I was always shuttling between peoples’ houses. Interestingly, my uncle’s place was more like the home I needed, and so we’d go there during vacations; and he was always buying us chocolates - I think I was around five or six then. One afternoon however, I left my aunt’s place (my mum’s younger sister; I think she and my mum had issues) and went to stay at my uncle’s place. Things went well, until suddenly I noticed that he would come back from work and just take out his anger on me, apparently due to some frustrations at work, and because I was usually the only one at home. For no just reason, he would beat me silly, and thereafter strip himself naked and order me to go naked; then he would put his manhood in my mouth and force me to do real disgusting things until he came. It never ended there, as he also forced me to lick up every bit of his semen and swallow all. Any attempt to refuse was met with gruesome beating and this went on for four years. Yeah, that was how long I had to put up with it, because I had nowhere to go. More frustrating was the fact that I had nobody to report to; nobody, because as I said earlier, my mother was never close to me. Even on those occasions when I as much as summoned the courage to say “Mummy, do you know what uncle did?” I was usually met with series of hot slaps and a command to “shut up!!” And my uncle actually capitalised on that situation. He knew I was as good as an orphan.

His driver too

Even my uncle’s driver was not left out in this abuse. Usually he went to drop my uncle’s children, who were much older and in college off at school. Because of what I knew would happen if left alone with my uncle at home, I usually preferred to ride with them and be away from home, even if it was just for a while. On this particular occasion, I slept off in the car as we were coming back, but suddenly woke up to find the driver poking his fingers into my private part. I was so shocked that I tried to raise an alarm by crying out for help; but all I got even as I began to open my mouth was a vicious slap; I still call it the slap of my life; because after that I just shut up and endured the ignominy and cried all through. As usual, there was nobody to report to. Is it the uncle that was doing the same thing to me that I’ll go and tell, or is it the mum, who just wouldn’t listen?

The after-effect

Of course it got to me psychologically and I was always cold, sluggish and withdrawn. I was always crying, always sick and always throwing up – a result of the swallowed semen, but never able to unburden my heart to anyone. I couldn’t even tell my teachers at school because I was living under serious fear. I was like an unwanted child, so nobody ever asked about why I was always sick, let alone take me to the hospital. I finally left my uncle’s house when I was eight to live at my aunt’s. Now she also was hostile in a different way, and the bottom-line was that she didn’t want me around and therefore built a ‘block’ around herself, such that I couldn’t relate to her. She made it clear in her attitude that I was a burden that she just had to put up with. So I endured different levels of abuse and hostility; and became an introvert and also suspicious of people around me.

Nowhere to be found!

My mother for instance never taught me anything about sex. She was so detached from me that she didn’t even know when I started my menstruation, even though I was practically living with her then. I only noticed some blood stains all over my body, and I was still wondering about what was going on when our neighbour, a man, called me and gave me some tissues and money to get the necessary things to clean up. He was a married man who up until then hadn’t made any obscene gesture to me. So, he was purely out to help; knowing fully well that my mom would never bother. But instead of my mum being appreciative of the man’s gesture, she picked a quarrel with him and all hell let loose. All sorts of nonsense!

In fact my first education on sex was on TV via the late MEE Mofe Damijo’s show. I remember how I had to sneak into some neighbour’s room to watch this particular episode which was on sex education. Seeing my enthusiasm and knowing that I would never be allowed to watch it in my own home, the neighbour also promised to allow me watch subsequent editions. You could say all I know about sex I learnt from MEE’s show; and from my own findings. Even as I’m speaking to you now, I still haven’t told my mum of my experiences at the hands of her relative, because there has never been that kind of opportunity.

Lost And Found Dad

I didn’t meet my real father until I was around 17. Interestingly, dad wasn’t much better than mum in the final analysis. I lived in his house for about a month and I was thrown out. My education had been partly financed by my dad’s elder brother and myself, because I started working right after secondary school. Of course there was the initial euphoria of finding his lost daughter, and he showed so much love during that period. But I had this half-brother, who because we were almost within the same age bracket engaged me in the usual childish rivalry and arguments. Expectedly, that set the stage for my problems, because naturally, I was the guilty one. They say it doesn’t rain but it pours; my step-sister was getting married and she accused me of stealing her money, which was not true. I tried to let her see that she couldn’t just zero down on me because this was a time when we had so many people in the house, but she insisted and even took out of my lunch allowance as replacement. So during the engagement, I was the one that helped collect the money people sprayed her, and I simply took back my money. And then she went to report me to my dad that I’d stolen her money. And as hard as I tried to explain to my dad that she was the one that first took my money without my consent, he was not just ready to listen. So I became the thief in the house and they as much as possible tried to stigmatise me as a thief in the neighbourhood. Dad even bought different sizes of canes, specifically to service me and one day, on the basis of some missing items and other lies, I was called out at the assembly at my father’s instance, stripped naked, and publicly flogged. All these at a time when I was in SS1 class!

Things generally became so unbearable for me in my father’s house that I knew it was a matter of time before the bubble burst. And it did burst. We had a disagreement over my intention to go and spend one Xmas at my aunt’s. He objected, whereas I insisted; and before I knew it, there was a face-off. He started chasing me round the house with his horse whip and whipped me until everyone stopped to watch. I was so angry that I didn’t know when I bent low, scooped up some sand and poured them directly into his eyes. Of course that was the end of my stay in his house as he threw my things out. A neighbour took me in for two weeks until my mother – I don’t know how she was able to talk her into it – came and took me away. All through my whole ordeal in my father’s house, she never knew anything because she never asked or checked on me.

After that she tried to be close to me and even tried to atone for her past misdeeds, but I guess it’s too late. We do have a relationship alright, but that closeness can just never be there. Even now, I practically live on campus as I have nowhere I can really call home.

First true friend

Believe me, the first time I ever unburdened my heart to anyone was when I was 23, and it was to my boss at work, whom I also played tennis with. In my attempt to take my mind off the different issues bothering me, I’d taken to tennis. But he noticed that I usually just packed my racket and disappeared as soon as a game was over, so he called me one day and was like “hey, can we talk over suya or drink” Initially my attitude was like what now! But he made it clear he was coming as a friend and nothing more. So we got talking and I told him every bit of the horrible experience I had bottled up and lived with all my life. And he was consoling, promising to be of help as much as possible. For you to know how much of a confidant he has become, I even told him I was coming to give this interview. And though he was against it, I made it clear I was telling the story because I wanted mothers out there to be aware of the dangers out there and maintain a close and cordial relationship with their daughters.

Why is she telling this story?

I was at the UNILAG Campus Genevieve Gathering; I’m an avid reader of Genevieve and I knew that a seminar from its stables, especially on sex education was always going to be very enriching. So I was the first girl in the hall – I even ignored my lecture for that afternoon, just to make sure I didn’t miss anything. Even at the end of the day, I still think that those girls that really should have been there to learn from the topic of the day were not there. Believe me, I’ve seen things. I’ve seen how girls live on the fast lane and practically murder themselves through wanton sex-capades and quest for money. I remember how a 100 level girl got impregnated and had to be aided by her boyfriend to abort it by inserting a long, curved iron (straightened clothe hanger) into her womb through her vagina to pull out the growing foetus. That was just a week before Genevieve came to the campus. Of course the girl died in the process. And that was not the first time such was happening on that campus. I have seen what lack of adequate parenting and counselling and childhood abuse can do to a person. And that’s why I’m telling this story. I am a living experience of some of these things and that was why it was not easy for me to place myself in the picture of turn-around or turning-point that Mr. Toyin Subair was painting that afternoon. He spoke well, but I just wanted to ask him how he expected an abused child like me to have a turning point. What was that turning point that can erase the memory of all that experience at the hands of my uncle?

Love Life

Absolutely none. I’m 28 but my experiences in life have taught me that marriage really is not the ultimate. I’ve seen so many failed marriages and so many violent and unhappy ones, that I might as well just live my life alone. Honestly I think that marriage is not for me. I can do without all those complications. Even my only attempt at a love affair ended up on a real sad note as the guy turned out to be the kiss and tell type.

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I was over the moon the moment Damola was born. There I was, a young woman, newly married, with a first-born child – and a boy for that matter in a Nigerian society. I was completely ecstatic! And bearing in mind that my husband had earlier been married without a child, it was a great joy for his parents; their first-born son was finally having a child, and a boy at that. However, my husband and I noticed on the second day that things were not all they were expected to be, but I put it all down to the fact that I was a new mother. I noticed, for instance, that he didn’t suckle; he didn’t take the breast milk the way other babies did. He was sleepier. He was an extremely good baby, slept through the night and except you woke him up to eat, he wouldn’t actually wake up to cry like other babies do. But being a new mother, tired and all that, I was a bit grateful that my baby slept and allowed me to sleep.

At home, we noticed he wouldn’t breath very well. And then he wasn’t thriving; he wasn’t gaining weight as he ought to. Although he didn’t look like a typical child with Down’s syndrome, he had all the other features. He was extremely floppy, very soft, very cuddly, and therefore everybody wanted to pick him up and cuddle. But we – me and his father who is also a medical doctor and a neurologist at that – knew it was floppiness as opposed to the normal cuddliness in babies.

Within two weeks of his birth, Damola developed an ear infection that necessitated our being admitted into the University of Lagos Teaching Hospital. All the investigations were done, but at that time, 18 years ago, we couldn’t do chromosome studies in the teaching hospital because it was new worldwide and expensive. But my husband and I resolved that whatever the case, this baby was ours and we loved him. Later we took him off to England where a diagnosis was made within 48 hours. He had Down’s syndrome. By that time, of course, he was about five months old and his position in the family was established.

Even as a doctor, I had no inclination whatsoever during pregnancy that anything would go wrong. In fact, I am very untypical of women who have children with Down’s syndrome. Usually it’s a condition that occurs to children of older mothers of about 40 and above. I was 25. Such children are usually last-born children, sometimes after a longish gap. Damola was my first-born.

After Damola, I was apprehensive of what would happen to my other children. A group of medical professionals was like, “Oh, you have a child with Down’s syndrome. You better delay the rest of your family so that you can have time to look after this child.” Another group offered a completely divergent opinion: “Oh, you have a child with Down’s syndrome. You better hurry up and have more children because children are the best teachers of children.” We bought into the last advice and had two more children in quick succession, and then a fourth after a bit of a delay. It proved a bit beneficial to Damola and our family as a unit. And I must say that 70% of what Damola can do today is attributable to the siblings pushing him along, encouraging him, accepting him and being there for him…

Of all disabilities, intellectual disability is the most difficult, the most challenging. You know there is a limit to what they are ever going to learn and how much you can communicate to them. And any child born to you that is not up to your expectation, and I take that in the broad sense of it, leaves you with a sense of bereavement; and with that you are bound to grieve. But the most difficult challenge is that you are grieving for a child who is not dead. You discover that you are grieving for lost expectations, lost aspirations, lost dreams. And at the same time, you are not allowed to grieve openly because the child is there and well. And that is part of the challenges.

We got through the grieving process mercifully quickly because of a great deal of family support, a great deal of knowledge on our part and the acceptance that a problem is a problem as long as there is no solution. But there are times in Damola’s life and in our life as a family when the whole grieving process starts all over again.

I remember one very poignant Saturday when Damola was about 10. Suddenly the whole neighbourhood was quiet and, for a minute, I didn’t understand what was going on until it dawned on me. All his age-mates and friends were off to do common entrance exams! My son wasn’t going to do common entrance exams. My son would probably never do common entrance exams… That started another flood of emotions. It gets better as time goes on, but there are going to be times when all his age-mates are going to the university; my son won’t go to the university. When his mates are going to get married, at a time that you expect young men and women to be getting married, the chances of it happening to my son are still rather remote. It will not happen the way it happens to other people’s children. And those are times when I do feel it and I will feel it. And then as we have begun to see services being put in place, as we have begun to explore the endless opportunities that I now see available to them, I don’t feel so desperate or despondent anymore.

To jump into the immediate past, none of my other children, and a lot of women out there can boast of having an Olympic gold medallist as their child. So, in many ways I have come a long way and I have come right round to a point where I can actually celebrate plenty of things in my son that a lot of parents may never celebrate via their sons. You wouldn’t be here talking to me and I wouldn’t be appearing in Genevieve, the best all colour, all glossy magazines in Nigeria today, if not for Damola. Whichever way, Damola has allowed me to warrant an entire focus. So these are things I’m going to be celebrating, and when I begin to celebrate these things, it in many ways overtakes the perceived pains. As the philosophers say, “You can either see a glass as half empty or half full”. I just choose to see it as half full. It’s very easy to fall into that grieving process but it’s more rewarding to celebrate him. It didn’t even occur to me (at any point) to hide him because he was my first child, although I do appreciate now why some mothers who have them much later do that.

How would I describe Damola’s growth educationally? Again if not for him, we would not have known the capacity our educational system has for accepting different children and I must celebrate that. As a people, we are remarkably tolerant. And we are more accepting of the differences in people than lots of cultures in the world. And I celebrate this too. I remember in August 1997 when my second son, Demilade, was about four months, I’d started work again and everybody’s two-year old that I knew was getting ready to go to nursery school; so I too was looking for a nursery school for my son. And I went to Little Angels in Apapa, near my office and met this proprietor, Miss Mbadiwe at the time. And I said to her, “Listen, my son is two years old, he was born with Down’s syndrome, and I’d like him to start school.” Because I’m a doctor, I was not expectant of any massive academic performance and I told her that. However, I told her that every child benefits from social interaction and what I want Damola to benefit from school is interacting with other children. I said, “Don’t worry if he doesn’t learn his ABC or his 123. Trust me, I’m not worried at all. He would learn what he’s going to learn, but more importantly, he must learn social graces and social skills.”

And she promised to give it a try if I could tell her what to do; she’d had no prior experience with children with Down’s syndrome or any other intellectual disabilities. I would always remember her and thank God for her life because, it’s amazing, the first person I met was willing to help. I’ve heard some really horrible stories of some other women’s experiences. And it was about three months after she’d taken Damola in that I realised what a great thing she was doing for me. All the other parents started giving her trouble that if she did not remove that child from the midst of their children, they would withdraw their children…! She never told me. She fought the battle herself on behalf of my son. One or two parents did withdraw their children, but the majority she managed to speak to and win over. And they began to see Damola as a person. I will forever be grateful to her for that.

As time went by Damola grew up with his mates. But needless to say that when they went into primary one, he couldn’t go on with them. Fortunately by that time, his younger brother had started school, and in fact the younger sister was now on ground and getting ready to start school. When Demilade was ready to start primary one, I took the two of them to Corona School, Victoria Island. I’d spoken to a seasoned educator and educationist who immediately referred me to Mrs. Sashegbon of Corona School. She felt if anybody could do anything with Damola, it had to be Mrs. Sashegbon. And I tell you, that woman was wonderful. She’s become a friend, mother and a grandmother to these children. She took them on with no qualms whatsoever, and made the school fit Damola and Damola fit the school.

He has friends from Corona School, Victoria Island, to this day. They worked with him up to primary four when he could no longer keep up with the pace of his mates who had to be prepared for the common entrance examination, and we were ready for this. But he acquired basic skills. He’s got alphabetic skills, he’s got numeric skills; he can do simple addition and subtraction, he can read simple three-letter words, he’s got all the social skills and graces of his age, which is very important. He knows what is appropriate behaviour in public, touching, he knows when it’s appropriate, to whom, where. He acquired all that in primary school.

By the time he’d exhausted the capability of Corona coincidentally, the Children’s Developmental Centre, also in Lagos, was developing. The proprietress, Dr. Yinka Akindayomi who’s been a friend since College of Medicine met me one day in January 2000 and told me she was starting an adolescent unit. Damola by this time was 14 going on 15. He was beginning to hit puberty and was looking somewhat odd in the midst of the other children in the other nursery school I’d put him in the neighbourhood. So Dr. Akindayomi who also has one of such children said to me, “Are you willing?” Of course I was willing. And since then, Damola has taken off. He’s doing things that even I am amazed. He cooks; he’s very good at that. He knows how to play on computers and can sign his name and relay messages. His speech? That’s not very clear and we are still working on it. You must remember that one feature of children with Down’s syndrome is that their larynx are very soft, and so talking is for them a painful process. But he has an extensive vocabulary. I can tell you that.

Oh yes, many times I’ve wondered and lamented, “Why me? Oh God, why me?” I’m a human being you know and the devil will attack you at your moment of weakness. Most recently, I had to sit for an examination. I couldn’t practice for 14 years because of Damola’s circumstances, the fact that I had my three other children in quick succession, and my desire to give them all every opportunity. So my mates at school have now advanced their careers to the point where they’ve become consultants and what nots. And I came back and picked up my stethoscope in the year 2000 and said to myself, “Well, my children are well on their way. I can now go back to my profession.”

But I had to sit for an examination to be taken into the Master’s in Public Health course. And then the pressure to pass was there and the children were, of course, all over me and everything seemed to be going wrong. And then somebody passed a very disparaging comment about adult education. And it all came over me, and I said to myself, ‘Why won’t they say it to me? After all, I should have been doing this exam 12, 13 years earlier. If I’d done it at that time, if not for Damola, I wouldn’t be here going through this insult in my old age. And I was like, ‘Oh God, why me? And I would wallow in self-pity, big time. But then somebody said to me, “Shut up,” and reminded me that some of my classmates may be consultants, but they may not be married, and some married, may not have children. The devil can make you lament and bemoan what you are not and will never be; a thing I’ve chosen not to fall for.

Damola is today in the adolescent unit of the Children Development Centre. A Lagos Living and Learning Centre, which will be residential, is being built – and he’s moving in for vocational and job training to be able to hold down a job. There are lots of job opportunities that will be made available to them because a lot of corporate bodies are very interested in the work the CDC is doing in making these children part of the society, so they could have the same sense of self worth you have and a fulfilment in holding down a job and being financially independent.

Regarding his development so far, he is slower in certain areas than others. His reading skills are still very poor, his communication skills are developed but he doesn’t like using them because he doesn’t like talking. He can cook, he can clean. Oh God, he can clean a kitchen. He is the most skilled person in my house in cleaning a kitchen. You can see, his motor reflexes, his gamesmanship; as you can see, he loves games. All right, he’ll never be a Ben Johnson, a Michael Jordan… but he is definitely going to be first among his equals. He is very sporty. His training for the Special Olympics where he won a gold medal in 100 metres showed us that he is capable of great skills in athletics.

And so I can tell you there’s great prospect for him, Damola Roberts. He’s got a girlfriend! He’ll kill me for telling you, but he’s got a girlfriend. And I am praying that society will become tolerant enough to allow them to get married. He will hold down a job because I am going to fight for his right to do so. A lot of the things we are going to fight will be society’s attitude, not Damola’s inabilities. Already I can see him doing very well in the food and beverages sector and in the hotel sector, because he’s exceedingly competent at cleaning and managing kitchens and stuffs like that. And he’s already independent here within the estate; he can get around. He’s got his clippers, he knows the barbers, he knows how much, he can take himself off to places and sort himself out, he knows where to get his sharwama, his suya… And that needs to broaden for him if I, as a mother, am not so worried about ritual killers. He could probably actually take himself off to the centre on his own.

And honey, can I describe my feelings when he won the Special Olympics gold medal in words? How would you feel if your son wins a gold medal, 100 metres, at an international meet no less than the Special Olympics? Over the moon doesn’t begin to say it. Nigeria is an emerging program in the Special Olympics meet. We sent a team of four; we came back with four medals. Has our national team gone to the Olympics and come back with anything more than one or two? I was extremely proud of all them.

There is an association of families of children with Down’s syndrome, but I confess I’ve not really been a part of it. The families come together and share experiences. Parents of children with intellectual capabilities can get a lot of help and counselling at the Children Developmental Centre. Family doctors can also give you very valuable advice.

The important thing is to have hope. It is not as great a disaster as it was in the days when there were no services. Now we can do a lot more with these children, now we are capable of making them learn more, do more. In developed countries like the UK, the Down’s syndrome is no more a big deal. People are beginning to see that there’s hope, and the more the society becomes aware of their capabilities and strength, the less they’ll dwell on their weaknesses.

Rather than go through unnecessary bits of wrong advice, and trips to native doctors, prayer houses, churches, and the mosques – I’m a committed Christian by the way – where they are told to do seven days fasting and ten days blue fasting; mothers should basically come to an acceptance of the reality of what is and work with it.

Hurray! The very first of our Genevieve Gatherings (GG) in Partnership with Figment of Imagination has come and gone and what a day it was! Ladies with a yearning to discover the secret of entrepreneurial success and pump up their CAN-DO passion, arrived the Victoria Crown Plaza as early as 7.30am. With registration over, they are ushered into the cosy venue where Insolitus had taken charge as corporate consultants to the GG (Watch out for this growing brand).
The mood for the seminar was set the minute “Yours truly” climbed the podium (what butterfies?) and admonished the ladies to GO BREAK SOME EGGS AND GO MAKE SOME OMLETTE! However, the main tonic for that get-up-and-go feeling was administered intravenously through the extremely brilliant and well thought-out presentations of Lanre Olusola, Leke Alder, Dr Doyin Abiola, Nike Ogunlesi and Jumoke Adenowo. Our participants just hung on their every word. One thing was sure, they didn’t plan to leave the venue the same way they came, especially not after Leke Alder’s very down right practical 130-page presentation on ‘Building a Successful Business’. Shhh, don’t tell anyone now, but by the end of the day, I had sent word to my office to destroy all existing letterheads and also bin our VISION and MISSION; Leke had got us all thinking - “Branding”. It also seemed the right time to race back to the drawing board in search of less trite or cliched VISION especially after being reminded that NIKE’s VISION was “CRUSH ADDIDAS”. One of the participants was so fired up that her VISION instantly became “CRUSH ALDER”!
I don’t know what I had expected at our first GG but definitely not that brilliant outing! God just loves us to bits at Genevieve. At the close of the seminar, you could feel the positive energy and a Top-Up of The CAN DO spirit Genevieve talks about so much. The power within was ready to be unleashed; it was time to get off the auto pilot mode and take charge. It was such a great feeling! Hope it holds on long enough and no discouragement shall help it to peter into insignificance!
Shall I tell you what significant event took place at the venue same day? “Yours truly” finally broke loose from over 20 years of public speaking phobia. It was a sink or swim choice. I decided to do some breast strokes…
 She first realized she had this phobia for speaking in front of an audience about 20 years ago while LTV 8 tapes were rolling, camera, lights and all …..and the next action was an image of this fresh-faced PRO bolting right out, in the middle of her Welcome Speech; in full glare of top guns in the media - John Momoh, Willie Egbe and Mr “Robert Redford” (whom she married 9 months later). Her task had been to introduce the sweetest and latest sensation in the music industry, a woman who was poised to inject new gusto into the industry. Her name? Onyeka Onwenu. Needless to say, someone else did the introductions as yours’ truly crawled up the stairs and would have stayed there all night but for the guests especially “Robert” who cajoled her into joining the party..
Typically, I had so internalized that incident that it eventually defined all my attempts to break free.
My first major public speaking task came (after many other false starts) with the launch of Genevieve in September 2003. All I could think of was, ‘so I am going to have to face this demon, this manipulative monster who had my tongue!’ I moaned into the microphone as my name was announced. And with a frozen smile I tried to imagine that “everyone was naked” as someone had advised! But the image of me talking to a bunch of nudes made me panic more. So, finding myself in a hard place, I decided to just do it. I just spoke from my cue card, and my heart…You know what?. Standing at the lectern and talking about Genevieve worked the magic! Nothing else mattered, not even the trillion butterflies in my tummy; after all, no one knows my story as I do.
And then came The Pink Ball, May 2005. How could I not speak? I had another story to tell but then there was that demon again! Don’t worry, said my husband, we will record your speech and play it back to the audience so you won’t need to go up and speak. It was a perfect plan (nearly) until the MC (Adesuwa) called me up to say “something”! Oh God! NO! But as I strode up the stairs all I could feel was a calmness. I can do this, I told myself as I said my piece and then held my peace. Oh, it’s been an on going battle but never have I been more determined to fight this than now.
The monster wanted to rear its head during our GG but it stood no chance, for you see, I am living in the NOW of my life where there are no monsters. I have since realised that there are no monsters really except the ones we create in our minds. It just sometimes takes too long for us to figure it out. What monster is holding you back? Crush its head NOW!
It’s only some days to our 5th anniversary party and we’re taking no monsters, sorry, prisoners as we honour “Ordinary women doing extra-ordinary things” See you at the Torquoise anniversary celebration. It’s a party, not a grand ball, so dress  easy and come prepared to enjoy because we’ve gone all out to impress.