16 June 2008
You will never appreciate what you have until you lose it .For many people their child talking at the age of two is nothing difficult, but wait until you meet a child that never uttered any meaningful word since birth until her 5th birthday. "My child Tolani who will be marking her 9th birthday on the 6th of June this year, only started blabbing a word when she was five years old." Mr Willoughby said, as he let me into his world as a father to a child with Down syndrome. Down syndrome and autism are related in a way as both disorders affect the speech of the child and cause mental retardation. But while children with Down syndrome have a similar look all over the world because of their round face and small mouth which makes it look like the tongue is bigger than the mouth, autistic children have a normal look like any other person and if you ask me look prettier.
Mr Willoughby continued "I discovered my daughter has what is called Down syndrome when she was three years old. However, when she was born, I discovered that she was different from many other children in some ways. At first, the doctors said she had jaundice and they kept treating that for three weeks after her birth. When I got tired, I asked them to discharge her. When we got home I noticed that she was bringing out her tongue slightly, and when you carry her, she looks weak. However, when she was three years old, she could not sit on her own without someone assisting her. Also, she could not talk and this gave me more concern. Each time I came back from work, I kept thinking of what I can do to help my daughter. Until I decided to quit my job to help my child become independent and useful in life. Since I embarked on that challenging but adventurous journey, she has taught me what no professor in the world can teach -to give love unconditionally, to be patient and to learn to understand people."
Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag 'normal children'. I use the phrase slightly different behavioral pattern because from my interaction with most of the children, the only difference I could notice was difficulty in talking, but all the same, they have a way of communicating which any keen observer can learn without much stress. This was contrary to my earlier opinion that I was going to meet a group of people who are insane and will be aggressive as soon as they notice a new face. To my amazement, the first child I met Michael Jnr who is autistic, came in excited and went to his class in high spirits.Micheal came in with his father who shared his experience with me.
"When Michael was growing up, I noticed that at age three he could not talk. I also noticed he does not play with other children, he was always on his own. I repeatedly told my wife that this was not normal, but her response was that most children don't talk on time, and that she has talked with many of her friends who gave her hope that he will talk. This made me not to seek medical attention on time until he was 4, and he did not talk. I took him to a pediatrician in Jos, who told me Michael was autistic. My first reaction was that of surprise because I never knew there was anything like that."
Mr Ayiem, Michaels' Father, confessed that it was truly traumatic when he found out his sons condition. "When the days went by, and I could not hear my son call me daddy, the reality of his condition began to dawn on me afresh. It was even more embarrassing when we go out with him and he could neither talk nor relate with other children. And people will ask you questions which you don't have answers to. But I have been able to overcome all that, and taken up the challenge to help my son." For me, he continued, "the major challenge was how to understand the boys' needs. Since he could not express himself verbally, you need to observe him carefully to know what he wants. When he was much younger, I took him to a mainstream school but they did not understand him, sometimes he soils on himself and they will not clean him up. This made me feel so bad until I found out there are schools where teachers are trained specially to take care of these children. I'm happy we have one in Abuja. But I must quickly say that it is not enough to enroll these children in school, but must learn to know them so we can care for them adequately. I must indeed thank my wife for giving our son the help that he needs."
Mr Ayiem also said an autistic child should be given adequate medical attention . "I have been taking my son to one professor in Jos that is working on the case of autism. He took the specimen of the boys' urine which he tested after which they found out some vitamin deficiency that could be responsible for some of his behaviors. I was given some multivitamins that will help him and monitor him for three months." According to the Prof., autism is not a case parents should worry about, because it is believed that autism is a storage house for intelligent children. When Daily Trust sought to know if the condition of his autistic child was taking so much money from his pocket, he said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.
Unlike, Mr Ayiem that did not know his son had autism until he was 4, Mrs. Zakari, a mother, whose daughter has Down syndrome said she got to know about her daughter Halima's case when she was four months old. 'I noticed that the child was not like any other child. She could not sit down even when she was trained to, and she was very weak- like her bones were not firm. Since then, I have learnt to live with her. Though it's challenging to raise a child with Down syndrome or autism, but it not difficult with Gods help. One of the challenge for her was how to communicate, but over the years she is overcoming it, as she can utter some few words and when she finds it difficult to, she make signs. In terms of relating with others, Halima is very friendly." This I can attest to as Halima thronged around me, while I was chatting with her teacher earlier. Just as Halima was all over me and wanting to collect my camera, Wendy another child with Down syndrome came around, fulfilled and simply ridiculous. Wendy is 10 years old. I asked of her name and she goes. My name is Wendy Ojugbuna ochunko.With the last name 'ochunko' everyone burst out laughing. What is 'ochunko' I asked Wendy's teacher? And she said, "Wendy has a way of creating some words that can set everyone rolling on the floor with laughter. Wendy is a funny and ridiculous girl." With this comment I waited to see the parent of this wonderful girl. Mr Ojugbuna, Wendy's father, walked in excited and willing to talk to me. Unlike one of the parents of an autistic child who declined any comment on her child's condition earlier. And when someone confronted her of being ashamed of her son, she simply objected that she had a sleepless night as a result of attending to a sick cousin. Anyway, Mr Ojugbuna was as vibrant and outspoken as his daughter Wendy. Wendy, he said, was born in the United States and when they noticed some abnormalities, they took her to the hospital where it was diagnosed that she had Down syndrome. When they found out, the next thing he said was how to manage it.
On how he has been able to cope with the attitude of people he said "socially people see it as a stigma, but I don't. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don't care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world. I think people react the way they do because they are not enlightened and instead of getting angry, I pity them because it can happen to anybody."
Mr Ojugbuna continued, Children with autism or Down syndrome are part of the society. They are not mad as people think. Autism is confused with mental illness due to our culture. In the United Kingdom, you see people who are not physically endowed, as you and I, but they excel in art, sports and some vocational skill, because the society accepts them. I think people should be educated about it. Because autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things. She is very warm, pleasant and outspoken such that when she is not at home you miss her. I'm not supposed to say this as a parent, but sometimes I miss her more than the other children. When my friends come around everyone asks of Wendy. I think there is something glowing about her. I see her becoming someone great in future," he said, beaming with smiles. "I place no limitations on her. She has shown enough traits to me and her mum, to make us believe she can get to great heights. For instance, she loves music. If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don't know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child." From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.
Mr Innocent Ukeje who said he left his profession as an accountant told Daily Trust what prompted him to pick a teaching job in an autistic school. "I like children and love to be around them as I enjoy their company. So when I discovered this passion; I decided to take up a teaching job in a school. But not just any school, but a school where I can help children who have special needs. So I did a course in special education where I learnt the basics of dealing with these children."
He said one of the ways they impart knowledge to them is through sign-language. "Different signs mean different things to them. So we use that to teach them things like, how to greet, come, sit down, and open your book e.t.c."Also, because they lack theory of mind, that is ability to understand things orderly, we teach, teach and re-teach. We do not rush them because it takes them time to understand.
"However, the challenge I face in the course of doing this job is how to understand them. Remember these children cannot communicate their needs to you verbally, so, you must come down to their level to understand them. When you understand them first then you can relate with them."
Another teacher shares her experience teaching the autistic and Down syndrome children. Miss Jennifer Chukuma, (Wendy's Teacher) said they learn faster through pictures. "For instance, if you say this is a car, you show them. Sometimes we bring the live object. When they see these things, they can relate what you are saying, to what they see. So we have teaching aids that we use to describe things to them. One of the challenges I face, is how to get their attention before I impact the knowledge. Most of the time they are in their world not wanting to relate with others. You must become their friend. We use the play-way method to attract them. For instance, when you sing rhymes, they shake their head, dance and with that you have gotten their attention."
She continued "I must confess you need so much patience to be able to teach them anything. They may be slow in learning but very brilliant. Recently, she narrated "one of my pupils, Ubong, while we were using the computer, the mouse got hooked, he kept pointing a key to me on the keyboard, and when I pressed the key it worked. I was astonished. But that only made me understand that these children are intelligent but need to be in a good environment with people that understand their needs, and they will excel. Therefore I will advice parents whose children are autistic or have Down syndrome to first understand the condition and be patient with them, because they have great potential that if channeled in the right way and at the appropriate time, they will become great. They don't have to lock them in the house as though they are insane ,but take them to a school where they meet with their colleagues, so that they can learn with others otherwise they will become uneducable."
In addition, Mr Babatunde Willoubhy said parents and the society generally must know that children with autism and Down syndrome do not choose to be they way they are, but it was caused by a disruption in the brain during the fetal development. Hence, parents who institutionalize their wards by keeping them in a boarding school for life, are only closing doors to some lessons they may have learnt from these children. He said "my daughter for instance, has taught me to be compassionate and patient with everyone .When I beat her siblings, She will tell me, no daddy, no, and this hits me. She is loving and caring and feels compassion for everyone. I believe charity must begin at home. A Childs upbringing has four corners, the home, the environment, the school and the child. If one is missing e.g. the home, all the child would have learnt from that, will have been lost. Thus, Parent should give special attention to these children because they have special needs and if they do, they will not disgrace them as some think."
He added, "Parents can start early to help children with autism by getting professional help. They have to run a test that will show the hyper activity level of the child. The result of this will give the parent a better idea on how to help the child. Adding that no two children with autism behave the same way, so what may attribute to one, may not suit the other."
Mr Willoughby said "the best help the society /parents can render to these children is to empathize rather than sympathize with them. Parent should help them find their area of strength and build on it. This is the way I have been able to help my daughter. She cannot do much but the little she does; I encourage her to do it well. I taught her how to sit, how to use her cutlery, how to relate with people and now she is semi-independent. She can also verbalize and tell someone her needs now. Very soon, I will take her to a conventional school were she can meet other children. My joy as a father is seeing her do some of the things I taught her, by herself. I may have left my job over five years ago to help her, but today I'm glad that has prepared me psychologically to help other children with autism, Down syndrome and other related ailments."
A Consultant Pediatrician at the Garki Hospital, Dr Miriam Muktar said autism has always been in existence, but people attribute it to spiritual problems.
On how parents can know if their children are autistic she, said "autistic children put up some behavioral abnormalities, like tending to be alone rather than play with others. They tend to be indifferent to communicate with other children, Intense and absorbing interest in some things different from what their peers would engage in. Others have compulsive and ritualistic behavior ,meaning they follow the same pattern of activity and an attempt to disrupt such pattern evokes a tantrum or rage reaction from them, there is diminished response to pain and external stimuli, Speech is often delayed and when it is present, they usually make a nonsensical rythem.Some engage in head banging, teeth grinding and rocking. Also they don't like eye contacts and some display violent behavior."
On whether this brain disorder is curable; she said autism is not an ailment that requires drugs. It is a spectrum, meaning at one point it is mild or even looks normal, or the extreme of all the behaviors stated above. It could however be managed between a Peadiatrician, Psychiatrist and the Speech therapist.
Furthermore, she emphasiased "there is no drug you can give an autistic person to make them behave well. But behavior modification is very helpful. These children can be taught to think from point one to the end. They should be taught to behave in an appropriate way just like other children. They can also be trained to learn a trade, an art or a skill which will be useful to them in life. She said some have peculiar love for music; some are good in mathematics, so parents should identify the strength of these children and build on it.
As to whether multivitamins can help autistic children as claimed by one parent, she said once you have a multivitamin deficiency it will manifest in one way or the other, but that there are theories and different treatment modalities that can help an autistic child, and that could be one of it. We have diagnosed some in this hospital. Some have hyper activity disorder, which makes them not to stay in one place, hence we administer some drugs to make them calm down."
On if the autistic child will talk and live a normal life eventually? She said "even if takes them a longer time than usual, must of them are able to communicate, but that also depends on the severity of the autistic spectrum, whether mild or extreme. But again an autistic child can grow up to be useful to himself and the society in general. We have seen autistic children that have grown up to become artiste, computer analyst, and award winning medalists. During the last autism day on 2nd of April, In a seminar I attended in Lagos, some of them did a Show for us and one of them is an international award winner in cycling, so they turn out good, once they receive good training,"she said
But to my last question, Dr Mukhtar could not help but laugh. Will someone with autism be able to marry and have children? Your guess is as good as mine. But why not, since it does not affect their reproductive organs.(Not medical perspective) But again life goes beyond getting married and having children. As those who live unmarried have better time to give to the actualization of their dreams, and giving it all the push it takes to birth it.
Be the first to Write a Comment!
Copyright © 2008 Daily Trust. All rights reserved. Distributed by AllAfrica Global Media (allAfrica.com). To contact the copyright holder directly for corrections — or for permission to republish or make other authorized use of this material, click here.
AllAfrica aggregates and indexes content from over 125 African news organizations, plus more than 200 other sources, who are responsible for their own reporting and views. Articles and commentaries that identify allAfrica.com as the publisher are produced or commissioned by AllAfrica.
