By NBF News
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Years of psychological pain, self-denial, dedication and sleepless nights spent caring for her autistic daughter, Sharon, and sickler son, Nathan, have done little to dim the pretty looks of Mrs. Sholaye Diden, who hails from Warri North Local Government Area of Delta State. Rather, the heavy burden has helped her remain very slim.

Perhaps, it was a combination of her good looks, resilience, strong will, devotion and a sprinkling of 'stubbornness' that attracted the runaway husband into a union with her. But when the marriage produced a very lovely, pretty daughter, who unfortunately turned out to be autistic, the man started getting the 'Andrew' itch.

And when their second child, a boy, was born with sickle cell genotype, 'Mr. Andrew' calmly forgot that he contributed 50 per cent of the boy's genetic identity; instead he threw in the towel and walked out of the marriage, leaving Sholaye with the burden of caring for both Sharon and Nathan, all alone.

In a very real way, Sholaye has demonstrated the meaning of the biblical passage that says a true mother would never forget (abandon) the child of her womb, no matter what happens. So, when she says that, 'Sharon is a blessing to me', you know it is a true confession from the deepest recesses of her heart. It is a claim she has proved beyond measure. Like thousands of other autistic children, Sharon is in dire need of therapy that would help develop her natural potentials. Only a structured and federally funded programme can provide the therapy she needs. In this interview, Sholaye reveals that the establishment of this programme is her earnest desire. Excerpts…

When did you first notice her condition?
She was going on two when I first noticed that something was not exactly right. By the time she was two years old her words started fading away. Things she could say, like 'mummy' and 'bye-bye', started fading away. I knew something was wrong. Because she was my first child, everybody just felt that I was obsessed with her. Nobody was really paying attention to the concerns I expressed. Ordinarily, when you reach out for what society calls a 'normal child', the baby will lean towards you or comes to you to be picked up; when such a child sees other children, he/she plays with them; they also feel pain. But Sharon is not like that - she does not feel pain, she doesn't know danger and doesn't really care about it. She just doesn't bother herself about anybody else.

Apart from myself, the only other person she can tolerate is my niece, Toyin, because she seems to understand her and gets along with her. Sharon is only interested in you when you want to know what she is about; with her, you don't try to compel her to be what you imagine she should be; simply let her be her own person. From that very early age, I knew that something was not really right with her.

I was just taking her to teaching hospitals all over the country. I took her to the University of Benin Teaching Hospital (UBTH) and to the Military Hospital, Yaba. We even went to the University of Calabar Teaching Hospital (UCTH).

Were you living in Lagos at the time?
No, I was living in Warri, Delta State. The reason I was taking her all over was to find out the cause of her condition.

So, what were the doctors telling you about her? In other words, what did they diagnose?

The doctors just didn't know the cause of the problem, because I remember that at UCTH, the doctors said she needed hearing aid. But I knew she could hear very well because when you call her, Sharon would respond. Whenever she heard her favourite cartoons on television, she would react happily.

How old was she then?
She was two-years-plus. But the doctors just thought it was mere case of hearing problem. I knew it was more than that and I was convinced they didn't know what was wrong with her. They were in dark as much as I was. They felt I was being stubborn and not wanting to follow their advice. Taking her from one hospital to the other actually wrecked my marriage. My husband felt I could just have another baby and cast Sharon aside. But I saw it differently - I didn't want to replace my daughter.

In other words, he was indifferent to Sharon's plight?

Not really. Initially, for the first two years, he provided money and supported my quest to find out the cause of Sharon's condition. But after then, he lost interest; he just blanked out completely - and did not want anything to do with Sharon. He became indifferent. He felt I should have another child and forget about Sharon. When Sharon was three years old, I had a son that is a sickler.

When I had my son, and he turned out to be 'SS', my husband felt there was something wrong with me. There was a complete change in his attitude towards the children and myself. He started keeping late nights. As far as he was concerned, I was spiritual bad news he just had to move faraway from. So, he walked out on me and our children. The marriage broke down in 2006 when my son was three years old. Sharon was born in late 2001. My son was born on December 27, 2003.

How did that make you feel?
Of course, I felt bad about it. I was shattered. I know some women whose children have spiritual or occultic problems. But with Sharon, nobody can pinpoint the cause of the problem. That's why when people say 'I know how you feel' I just don't believe they do because the truth is that nobody can know how I feel. No person can know how another person feels, even if something similar is happening to that person. It is never the same.

I was shattered. I was taking pills - Lexotan - to be able to sleep. I was taking 9mg of Lexotan. For a normal person, 1mg of Lexotan or even half of that would knock you out. But with me, 9mg does not even make me sleep. I can honestly say that I have not slept in the last five years. As I speak to you, I have not slept a wink. The other day, I stayed awake from Tuesday until when my children started preparing for school on Wednesday morning. I did not blink my eyes till morning. I just couldn't sleep.

I remember the first day I went to Autism Associates. After interacting with Sharon, they commended me, saying that I had done very well with the way I handled Sharon. But they didn't understand that everything I had done with Sharon was done out of fear. I was very strict with her; I didn't want anybody to call her a freak. When we go out in public and she is excited, the only way she expresses it is that she laughs uncontrollably. At such times, people look at you as the mother - and judge you. They judge me as her mother, but I don't care. But she is growing up and will soon begin to see this judgemental attitude of people around her, knowing that they see her differently. My fear and concern is how she will handle this.

When I don't sleep, those are the things that run through my mind like a video recording of my daughter's future. So, I am always thinking about this. At the time she was four years old, I could do certain things - I used to import goods from London and Dubai, but I had to stop because of Sharon. Every kobo I made was spent in taking her from hospital to hospital seeking an answer and a solution. I can no longer do that business; I am broke and can't even afford the cost of her therapy. Autism Associates has been able to get people to sponsor my daughter's therapy, but there is a limit to people's charity because they have their own problems, too. The burden is overwhelming. Some days ago, my son had a crisis. Sharon couldn't sleep because I was moving up and down - and this was distracting her. She started getting restless and doing things. I am a single mother and I don't have anybody or relation staying with me.

My youngest sister is married and living with her husband in America. My siblings love my children and would do anything for them. But I can't hold them down because my daughter has a problem. So, that night when my son had a crisis and Sharon wasn't able to sleep, I just couldn't handle both of them. But I didn't cry - because crying would only make Sharon worse.

Does that mean she can read your moods?
Oh yeah! When my marriage was going through crisis, if I cried, it worsened her situation. So, I try not to cry because it makes her not to sleep. So, I have learnt to bottle up a lot of emotions. You know, when you cry, you get a release from letting out emotion and you are able to breathe. There is so much going on with me now. I have a quit notice and the school is threatening to drop Sharon. She was once dropped in a school, which was just vindictive. In her present school, she is doing well - in fact, the school has really done a lot for her.

The school feels that I should get her help - which the good people of Autism Associates have been providing. I would say the people at Autism Associates have been my rock - indeed God has done tremendously well for me through them. When these things were happening, my father said he was surprised by the strength I have shown. Until these things started happening, I was not really a strong person, but I have learnt to be strong as result of the agonizing experience I have passed through. When they see the way I had been handling the problems I have, they wonder where the strength comes from. I tell them it is from God.

Looking at her, one sees a nice lovely girl. Are there any 'girl skills' she has learnt and is able to practice them?

Sharon is amazing. She can do house chores wonderfully well without you telling her. But sometimes she just goes down the slope as if she just lost everything she knows.

You said earlier that you could no longer do certain things. Please, explain.

I know Sharon's every mood. If I hear her scream, I can tell instantly whether it was an expression of delight or pain. If somebody is bothering her, I would know. Recently, I put out rat glue in the night. The following morning as I was preparing to take her somewhere to keep an appointment, I heard her humming.

I knew she was doing something not really right. When I got there, I saw that she had messed up her hands and smeared her face with the rat glue, and was almost putting it in her mouth. I just broke down and started crying. What if it had been rat poison? Ordinarily, a nine-year-old would know what rat glue or rat poison is, and she would also know that it is not supposed to be put in the mouth or smeared on the face.

As a girl, she will soon start seeing her menses (period), and there are so many things that come with growing up. So, you can understand the difficulty I face. How do I communicate these things to her so that she will understand when they begin to happen? She is tall and bigger than her age. I really want the government to help families challenged by autism.

What do you want from the government?
I can't say I am going through a worse thing than families whose children have cancer or kidney failure and are in terminal stage. My daughter is not dying. But everyday I see members of the National Assembly award themselves huge sums of money for all kinds of questionable constituency projects. Everyday I see big companies sponsoring Gulder Ultimate Search, Nigerian Idol, Big Brother Africa, Project Fame, and many other entertainment programmes on television. These are all frivolous things that have no real substance.

The millions of naira spent on the programmes would have done more good for society if companies use the money to sponsor autistic children for therapy that would give them a better chance to become useful to themselves, their families and the nation.

There is no way Autism Associates can carry this burden alone. They cannot help all autistic children that need therapy. There must be a national policy and structure specifically put together to help autistic children. That is the only way to deal with the problem. There are thousands of children with this condition that have not been identified. And, of course, they are not getting therapy.

Are there peculiar things she does?
There are days she just cries. If she is upset, she just rams the wall. Imagine a car running into a wall. She does not feel pain.

What kind of things upset her?
You never can tell. For we 'normal people', as they say, you could say you woke up from the wrong side of your bed and that day is not a good day - because everything just seems to go wrong. On such days, she could wake up and just cry all through, ram the wall. Because of this, I no longer decorate her hair with fancy things. When she was four years old, there was this day I went out and left her with my brother. I don't know what they did to her and she just rammed the wall. My brother didn't look at her. He just locked her in a room. So, when she rammed the wall, the bead on the hair cut the scalp of her head and she was bleeding from the spot when I came back.

Though, she had stopped crying and was playing, she was still bleeding. But she couldn't feel the pain. When I asked for her, my brother said he locked her in the room. When I opened the door, my brother started crying. Actually, he just didn't understand Sharon. This opened his eyes to her condition. When my siblings call on the phone, they don't bother to ask how I am doing. Rather, they ask of Sharon, how she is doing.

And I tease that Sharon has 'snatched' my siblings from me. They only want to know how she is doing. She is their primary concern - they all know that I don't sleep. How I cope is not what words can express. For people who have two children, they worry about school fees, clothes, books, etc. But I have two children who are challenged. In most cases, you find that only mothers of challenged children are still sticking to them. The fathers tend to get frustrated and walk away.

You know that a mother is a mother - there is no how a child could be that a true mother would walk away. She would look at the child differently. No woman should take motherhood for granted - going by what I have passed through as a result of my children's challenge. We are privileged mothers. I feel that I am blessed to have Sharon.

I am privileged to be chosen by God to be her mother; I really know what it is to love a child; what it means to know your child - every inch of the way. Some parents may take that for granted. Because of Sharon I know what love means. If not for Sharon, I don't know what would have made you (gesturing towards the reporter) to seek me out to interview me. I am nobody, I don't write books, I am not a celebrity neither am I rich. I am just a petty trader. But because of Sharon, you want to listen to me. Sharon is a blessing. Like all autistic children, she needs help.

Tell me, how old are you?
I am 34 going on to 35. I will be 35 on October 10. I was 25 when I had Sharon.

Has your husband made any contact with you since he left?

In the last five years he has seen Nathan (our son) for 15 minutes - that is, if you add the three times together. This was after several 'battles' to get him to come. In the same period, he saw Sharon only once for five minutes and that was about three years ago.

When did he separate from you?
In 2006, for them, he doesn't exist.
What do you do for a living?
I run a cosmetics and provision shop opposite my house. I can't go far from them. I have to be close to them at every point in time. Last time, when Nathan had a crisis, I couldn't afford to take him to hospital.