Tag: autism

OYEYEMI GBENGA-MUSTAPHA was at the 10th anniversary and fundraising dinner of Patrick Speech and languages Centre, a centre for autism. Her report:

The beautifully decorated hall of Habour Point, Wilmot, Victoria Island, depecits the mood of the event. A moment to celebrate outstanding people even in their condition.

For Oti Osasere-Adams, Osato, whose son, will be four years next March 15, it was a good evening for them and a way to share tips on how to get results for an autistic child.

According to him, everything seemed normal about his son’s birth and delivery. His delivery was ok and he weighted 4kg, and when he was about seven months, his wife discovered that cannot hear, which was the first red flag. So he decided to do hearing test. They were referred to the Military Hospital, Yaba, Lagos. That was the first time the issue of autism was suggested to them. It wasn’t easy for them because they set out for a simple ear screening, and from that moment, they started the journey into autism management.

Before clocking seven months, Osato had a consultant paediatrician, who allegedly had no clue of what he was dealing with. Thinking that the consultant knew what it was and how to go about same, the parents kept going to him with their son. And sadly, Osato kept falling ill. And before he clocked a year, he had gone on admission about four times, spending about four days on the average in the hospital. To obtain the vein of a child that young was hell. He screamed and that alone racked Osasere-Adams’ gut.

They eventually got to Lagos University Teaching Hospital (LUTH) and the female doctor enquired on what they were feeding Osato with. Thereafter, proper management started. The doctor  told them not to feed their son with noodles, wheat or anything that contains gluten. Practically, everything a child of his age should eat was forbidden. Osasere-Adams felt slighted and at a stage, insulted the doctor.

His wife stepped in, encouraged him and thereafter, they followed the doctor’s advice. The results were encouraging. There was a significant and encouraging change. Further assessment revealed Osato wasn’t glactose and gluten intolerant, and he could not walk. So Osasere-Adams and his wife realised that nutrition played a major role in his improvement.

As a couple, they were lucky to find family members that gave them the support. They also got the support of Guaranty Trust Bank (GTBank). It was about the time that they were trying to figure out what autism is that that they got information about the bank holding a conference on autism. They attended. And all the professional advice and consultancy they got were free, courtesy of the GTBank.

Though the couple live on the mainland, they contacted TLP Special School, Lekki. Their son’s condition was evaluated and they were told it is from a spectrum. The specific condition of the spectrum was picked up and they were counseued to seek professional management through a good school.

At the GTBank conference, they had heard of St Patrick Speech and Language Centre, and they felt that as a centre for autism, they could talk to them on the way forward. Though it was a bit expensive, they decided to go for it, for they realised that it wasn’t easy for the woman to have set up the place without support from anybody.

Osasere-Adams thought he could leave the scene for his wife to manage, to get money to keep his son in the centre, but surprises awaited him. He was told that for impressive positive results, both parents must be involved.

The reality of the management weighed on them emotionally. Financial management was no issue as they had the target amount to be paid and worked toward same. Emotional journey was a different kettle of fish – it was difficult. For all sorts of things could spring up – feeling low that his first son turned out this way, this is not how he planned his life’s journey, over reacting to issues in the home, nobody saw it coming, among other weighty issues. The feeling of blankness was also constant – routine antenatal was done, and no quack doctor was contacted.

Osasere-Adams considered himself lucky for not involving spiritual people to manage his son, but not after contacting a cleric who asked him for money to ‘cure’ Osato, just as he has to pay his house rent. As a couple the GTbank conference helped them realised, early that their son’s condition was not a spiritual matter. The early detection of the condition at nine month’s was good because the couple got to know that for the child to fit in to the larger society, the parents must accept to seek scientific interventions, so Osato can have a normal existence. “The acceptance gave us as a couple 70 percent solution to Osato’s improvement. And the support from family took 20 percent,” Osasere-Adams said.

There are some cases not discovered early, and which goes into adulthood, finding it a real challenge to adapt to the interventions. That gave Osasere-Adams an insight into one of his uncles, “who I now realised was autistic. Nobody mentioned a word of it to me while growing up. But experiencing it with my child, it dawned on me that that was what my uncle lived with- the puzzle of his behaving one kind fall in to place.”

Osasere-Adams realised his son’s talent of creativity and interest in the art that reaffirmed that there is no difference between him and other kids. “So, despite his being autistic, we disciplined him the way an average child of his age should. St Patrick specifically told us not to indulge him because of his condition. So, when he needs to be scolded, we do. I am the one that even do that discipline more. That could be responsible for his not calling me ‘daddy by now. He only calls his mummy, cousins and everybody in his world but me. I took it in my stride because discipline is a form of communication- he must know why I am disciplining him. We both understand each other as father and son.”

Another aspect of communication with their son is understanding his toilet needs, when angry with a development or a thing.

Osasere-Adams’s message to families with an autistic child is to first accept the child.

“Apprehension- how will he behave in church, fit-in in school; rejection- from neigbours, extended family members, friends and colleagues; depression and other issues will be 50 percent dealt with. Acceptance does not mean accepting defeat, or saying there is no solution. Acceptance is simply identifying with the reality and looking for solutions within that reality. The other 50 is getting the right information and support. My mother may disagree with my wife on any other issue but never on the situation of our son,” he said.

Osasere-Adams said his family and in-laws  dare not accuse his wife of giving birth to an autistic child or refer to his son as abnormal. “The support starts with the husband as the head of the home. Once you accept the situation, it is alot easier for the wife to deal with same. I have heard of husbands leaving their wives, but as for me, I have accepted Osato as my son and a project that I must work on and we are getting results from that resolution,” Osasere-Adams stated.

Osasere-Adams suggested that those with autistic children should seek for information from credible source – centres, support groups, the Internet, families and GTbank. His experience on this revealed that many people in similar situations are shy to bring it up and “wrongfully apply interventions that are counter productive. Whenever I talk about this, some are surprised about how freely I am on the subject and, then, they are encouraged and open up. They then get information on the role of nutrition, which takes a larger role than drugs. Supplements are even better than certain drugs,” Osasere-Adams said.

Osasere-Adams believes the Western world has an edge over Nigeria in the management of autism except inacceptance. “We have heard people tell us that our son should migrate to Canada or the United States. I tell them there is no care anybody wants to receive there that is not provided here. They are even better integrated due to our community affiliation. Autistic children stand a better chance here than overseas where everybody minds his business.

“The difference is acceptability. Overseas, the society takes cognizance of such people, even on the street and there is a policy on infrastructure for them. The school curriculum takes care of them; road builders take them into consideration, the health policy provides for them. That is the edge foreign countries have over us. Here the government has no notable policy and support. Only groups and the corporate organisations help out. It is wrong for somebody to shut up your child at the church for making a noise. All because the person is not aware of the child’s condition. I sometimes wonder what will become of my son  if I or the mother is not there. Ordinarily elsewhere, the government has a policy for such people but not here,’’ said Osasere-Adams.

Mrs Oritoke Aluko-Olokun is a retired radiographer with the Lagos State Civil Service. Her child, Seun, is the oldest at Patrick Speech and languages Centre. She appealed to the men to support women who have autistic children.

Mrs Aluko-Olokun, who said Seun would be 37 this month, discovered her child was autistic when he was about two and half months old. And without any support even from husband, she resolved to ensure that her son becomes the best.

Mrs Aluko-Olokun’s journey to Patrick Speech and Language Centre started when she read a magazine that featured her. She copied the contacts and was very hesitant to trace same out based on the notion that it could be expensive.

But one day, she summoned courage and was at the centre with her son. She was told what she required to enrol her son in the school. A  a civil servant, she knew it was beyond her reach. Annoyed, she left the centre with her son. Almost at the gate, the unexpected happened. Mrs Dotun Akande emerged, running after them.

“She invited us back into the building and promised to look at ways we could be helped. And that was how my son got enrolled at the centre till day. He is the oldest. Even the teachers call him uncle Seun because he is older than most of them. They relate with him with respect,” Mrs Aluko-Olokun added.

Mrs Aluko-Olokun wants the society to accept an autistic child as a part of them. “We all cannot be the same. Variety is the spice of life. Let us respect and love them for who they are. Love can make them turn to wonder to behold. Being autistic can influence their destiny badly. Mrs Akande took me in. Seun is enrolled in that centre and since day, she has not collected a dime from me. It is highly an emotional issue with me and I always wonder why I am a recipient of such a kind gesture. Mrs Akande said I must have done something really good some time back,” she sad.

Seun is an artist and his works were auctioned at the fundraiser.

Mrs Aluko-Olokun said she was so elated when Mrs Akande mentioned her son as the artist and “without her even calling my son upstage, merely hearing his name, we all saw how he walked proudly to the stage. That was great. I am so happy. I am full of joy. He has really improved over the years,’’ enthused Mrs Aluko-Olokun.

Mrs Aluko-Olokun wants the government to be concerned about the condition of people living with disability generally. “If given the chance children with autism can excel and make the country proud. We have them studying abroad even to Phd level. We have a child studying Mathematics in the university overseas. Let the government provide an enabling environment, especially from Patrick Speech and Languages Centre. Parents should be highly observant and should never lock such children up when they are discovered, but rather look fo a centre to enrol them,” she said.

For Mrs Akande, establishing the centre is a divine call because as a mother of an autistic child, whose condition was discovered when he clocked two, “and got results when we started treatment and saw improvement, as a couple, we knew there are some others out there with similar condition that must be helped.”

In the last ten years, it has been a struggle running the centre but for benevolence. “We can see what has transpired tonight. The children were fantastic.  And that nothing is impossible. I personally feel fulfilled. It’s been a struggle and yet beautiful managing the centre with almost no money. That shows that with the right therapy, right people caring for them, there are always positive changes. Getting the right professionals, especially speech therapists, or training others is really expensive.  Funding, that is the challenge,” said Mrs Akande.

Mrs Akande appealed to parents and families with autistic children to believe in them. She said: ”They need to love these children unconditionally. We can do much more with private sector, government funding and individuals’ as well. Government and private sector assistance is slow in coming. One cannot even readily explain what is wrong with such children to people when they come visiting.  We are holding this event to showcase what we’ve done in the last ten years and what we can do in another ten years, with adequate funding and support.”

To her, the first step in addressing the issue of autism in a child is to acknowledge the condition and not lock same child up. “They should be enrolled to acquire skill by believing in them. It is from their behaviour  that one can deduce that something is wrong in a child with-it is the intellectual capability and cognitive skill that need to be developed. The private sector intervention is changing the autism landscape largely. There are many centres now across the country that are enjoying their support so a larger number of families can bring out their children.

“But then a larger role must be played by the government by formulating policies that are all inclusive- all children must be educated under all circumstances. So that when parents come to a place like St Patrick, children can enjoy some form of scholarship. And bit by bit all affected children are reached.

“Many children with the spectrum have their own mind. They think out of the box and they are highly creative. They just need support and enough space to express themselves. So, at St Patrick, we can make do with another location. We have exhausted the 40 people we can accommodate. We can do with human capacity as well, so the task is to raise N100million for our permanent sight,” Mrs Akande added.