Despite their handicap, children with autism share the same desires and love for fun and entertainment, as do children who have no developmental disabilities.
When asked what he would love to be when he grows up, Oyese Ogunsanmi attempts a reply. In one breath, he talks about basketball, but he soon trails off to football, then back to basketball and on and on. However, in the midst of his beleaguered explanation, one name keeps popping up – Michael Jackson.
At this point, the message becomes clear: Ogunsanmi wants to grow up to be like the late American pop icon, Michael Jackson.
Earlier on, he had entertained guests at the fourth edition of the annual Patrick Speech and Languages Center’s Talent in Autism Concert, along with other children of the center. It was a mixed gathering of children of different ages, all with various levels of autism; they danced and acted; while those who could, attempted to recite poems and Bible passages.
It was an instructive sight for the guests, as they watched the children struggle to enact a performance, despite their disabilities, one could see the determination on their little faces as they concentrated on their show, smiling on cue. Some who were hyperactive jumped from one end of the stage to the other, exhibiting a limitless energy and full commitment to what they were doing. It was a remarkable performance that wowed the guests. The hall resounded with their claps and cheers, as they rose with one accord in a standing ovation to the entertainers.
Drawn from various homes, children of Patrick Speech and Learning Center belong to parents who are determined to give them a bright future, whereby they can become independent and function optimally in a competitive world.
Despite the sweet performances, the road to raising a child with developmental disability is rough and fraught with uncertainties – judging by the experience of parents who spoke to Sunday PUNCH.
A legal practitioner, Mrs. Helen Mbakwe, found herself in a very difficult situation when she got a call from her daughter’s school. The teacher informed her that her two-year-old daughter was acting strange. “Suddenly, she was no longer talking; she was withdrawn and refused to mingle with her friends. This was in her second term in Nursery One. I just assumed it was a spiritual problem and we went to all the spiritual places. We are still seeing spiritualists. We keep thinking that maybe with loads of prayers, all this will come to pass.”
Mbakwe is not the only mother in this situation. A housewife, Mrs. Dayo Ojalekan, said when her first son lost his speech at the age of four, she ran helter-skelter. “I took him from one place to the other. Some people said there was nothing wrong; others said he was just slow. There was no cure. You know, like a typical Nigerian, at first I thought somebody somewhere was doing something to my child.”
Both children are now in their teens and Mbakwe and Ojalekan say they have learnt to adjust to life with them. Mbakwe, who is still full of hope for her 13-year-old daughter says, “I try not to think about her situation, pretend that she is just like her two brothers and treat her the same way I treat my other children. She is the only girl in the midst of two boys. I am blessed with hope; we are a praying nation. But I am seeing tremendous progress; she does everything by herself but she is still hampered by speech. If the speech is dealt with, everything would be okay; but she shows no desire to speak.”
Ojalekan says of her experience as a mother of child with developmental issue: “My son is 15; it is his sixth year in Patrick. The important thing is that he is accepted here and his potential is evident. For instance, I have discovered that he is very good with computers. He is still doing it on a trial-and-error basis, but with time, a teacher should be able to bring out the creativity in him because he has a very good memory.”
But coping could be generally challenging for parents. Mbakwe looks at other girls her daughter’s age and is filled with endless longing, wishing she could be like them. Ojalekan says frustration can sometimes set in and it could be sometimes difficult to show love to the child.
She says, “It can be very depressing sometimes, because a mother’s life has to be modified to suit the child. For instance, when the saxophonist was playing, it was too loud for my son, and he started getting agitated and we had to come and sit outside. So, we have been outside for the greater part of the programme.”
She reveals further, “One is sometimes tempted to give up. Even with regular children, sometimes they do something that you are so frustrated you beat them; but he is still your child. That motherly love would still be there. I once flogged him, and I kept saying, ‘You won’t kill me, leave me alone, you won’t kill me.’ But then, I felt very bad later, and I said to myself, ‘why am I doing this’?”
Ojalekan says she has had the opportunity of living in England and living in Nigeria, and she has seen that the support system here is better.
“People come and play with him and they take the load off my hands. For me, it is the pressure of being with him all the time that drives one crazy. Even if you have a new born baby and you are with him all the time, you would be frustrated.”
On the other hand, for teachers and handlers of children with developmental challenge, it is a mixed experience of excitement and challenges.
“To start with, you have to love what you are doing; you have to be happy with them because they are very lovely to be with,” says Funmi Fagbemi, a speech therapist.
For Sola Omobolaji, a special education trainee, working with the children can be an interesting experience if the individual is patient and longsuffering.
He says, “The challenge is in coping with some behaviour that can be very frustrating. If you are not somebody who could endure for a long time, you could be easily frustrated. You have to deal with tantrums, self injurious behaviours and hyperactivity, as well as communication barriers. They don’t all exhibit the same set of behaviour; a child’s behaviour is peculiar to him, and they range from mild to severe. When parents bring them, we place them on assessment and each child has an individualised educational plan that we work on. After the assessment, we determine where the child belongs and we draw up a plan for him or her.
“Early intervention is key; my advice to parents is that once they notice these symptoms in their children, they should bring them on time because once they are older, the problem can be difficult to manage.”
However, taking a child to a special center is not a tea party in terms of cost. Mrs. Dotun Akande, proprietor of Patrick Speech and Learning Center says the school charges N400,000 per term.
She says, “What we are seeing is families paying and then becoming fed up. There is no date of graduation; you don’t know when the child would be better. Again, each child has his own unique skills and difficulties, so it is not a one-size fits all situation.”
“The government is trying, though. Recently, one of our parents got the government to equip our Information Technology room through the NCC programme. They gave us personal computers and internet; we also enjoy the patronage of Universal Basic Education from Lagos State and they always support us in all our programmes. What we want is for government to do more for us in terms of grants and support for the children. This would encourage the families to bring out these children. For instance, last year, we lost 15 families. They just stopped coming. Some of the children were good; they got better and went to regular school. But sometimes, parents become tired of paying the school fees, and they won’t tell you they are tired. Rather, when next you meet them, they will just say, ‘Ah, madam, we are doing well.’ They don’t want to open up to you.”
Ojalekan is in support of Akande’s proposal for government support.
Source - Punch news