Autism is a complex neurobehavioral condition that may include impairments in social interaction, developmental language and communication skills. Because of the range of symptoms, this condition is called autism spectrum disorder.
According to a 2018 data released by the World Health Organisation, one in 160 children lives with the disorder worldwide. The condition is a life-long neurobehavioral condition that causes speech impairment and affects social interaction.
Oftentimes, parents whose children are diagnosed with the life-long neurobehavioral disorder, initially grapple with shock, fear and denial of the condition. This is usually followed by drastic lifestyle changes to meet the special needs of the children.
PUNCH writes on the journey of two parents faced with the onerous demands that come with parenting special needs children and how they have remained resilient at repositioning them to face the future.
Kanyeyachukwu Okeke could hardly talk like his peers at the age of four. Physically, he was alright but communicating his needs and wants was a major challenge.
His mother, Dr. Silvia Tagbo-Okeke, was greatly disturbed by his non-verbal ability at the time. Her worries and inquisitiveness made her to consult a paediatrician and at first, her fears about the boy having a developmental challenge were dismissed.
“I discovered that when Kanyeyachukwu was about four, he wasn’t meeting his milestones in terms of speech. Other milestones were perfect. Of course, I was worried and took him to see a paediatrician.
All the while, it never registered in my mind that something was seriously wrong with him because the paediatrician kept saying he was still a boy. Other people also said he would talk and that I should not worry.”
Kanyeyachukwu, fondly called ‘Kanye’ by family and friends, was later evaluated and diagnosed with Autism Spectrum Disorder.
The Abuja-based ICT Engineer further shared:
“The first thing that hit me was a creeping fear because when you Google the condition, you see no cure, it’s life-long. As a parent, you are afraid.
First, you try to see reasons why your son should not be on the spectrum. It is an overwhelmingly sad emotion. For a parent you have to pick yourself up for the sake of your child and say, I need to look for a solution.”
Coping with an autistic child
After coming to terms with her son’s condition and the fact that it can only be managed and not cured, Dr. Sylvia, said she enrolled Kanyeyachukwu at The Zeebah Place Abuja, a therapy and preparatory educational facility in Abuja.
She said that taking the decision was a harsh reality that she embraced. She recounted,
“Mentally, as a parent, you have to say this is my reality; my way of life. You don’t have any choice. These children have been placed in your hands for you to take care of them.
You have to start looking for solutions and interventions from people that will help, and schools that will accept your son. You start talking about your son so that others will know that being different is not bad.
You go on groups on social media to find people with the condition. You do a lot of reading because autism is a spectrum. You carry out research because what works for Mr. A, may not work for Mr. B, and you have to talk to people who have gone through the process.
All of these involve a whole lot of work. You also have to get experts to work with your child, like a speech therapist and a whole lot.”
Kanyeyachukwu’s mother recalled how she went on an extensive search for the best therapy centre for her son and decried the low availability of centres across the country. She added:
“In Lagos and Abuja, we have quite a number of them coming up, but when you go to states like Ogun, Osun, Edo, Adamawa and Katsina, it is a challenge because those people don’t have resources at all.”
Over the years, Kanyeyachukwu, now 12 years old, has picked up some obsessive behaviour that the family had to put up with.
According to his mother,
“Kanyeyachukwu’s trigger was only the speech. He wasn’t talking and for autism, the behaviour was not constant as they pick up other behaviours along the way. They can start without Obsessive-compulsive disorder, then, maybe when they get to 10 or 11 years, they will pick that up.
There are low days when they are just depressed, they throw tantrums. Something may trigger it, so you have to find out what it is and try to make them comfortable. He cries and laughs for no reason.”
Dr. Sylvia said since there was no blueprint to follow, she had to keep changing as her son did, adding that Kanyeyachukwu’s siblings also had to continually make adjustments. She said,
“I talked to them about taking responsibility for Kanyeyachukwu because I won’t be there forever. I will have to leave them one day. I have to prepare his siblings as well. People like him are very vulnerable and innocent. Society needs to protect them. That’s what I tell his siblings.”
Breaking barriers to becoming a wonder artist
In every challenge lies a blessing in disguise. And this saying played out in the life of Kanyeyachukwu, who despite his autism status was able to excel as an extraordinary artist.
Kanye started painting at the age of 5 and was awarded the prestigious “Flame of Peace Award”, a recognition given to him by the Association for the Promotion of World Peace, an Austrian non-profit organisation.
Within the past few years, Kanye has hosted two exhibitions in Abuja and Lagos, and has had his works displayed at several exhibitions abroad.
Kanye’s mother said, beaming with a smile:
“Kanye practically told us what he wanted to do. He kept drawing everywhere. He just started it. That is the unique story of Kanye. Luckily someone saw his artwork and realised that it was really good and advised us to support him all the way. That’s how it started.”
She, however, said he finds it difficult to focus on any other thing apart from painting. She added:
“When you put a palette, knife and pen in his front, he can paint for hours and would remain focused. For Kanye, art is a way he expresses himself; he speaks loud and clear through his art.”
The Okekes are optimistic that Kanye would grow up to be a renowned artist. She further said:
“I just want to see him improve every day in his art, speech and social interaction. I want him to be able to have self-help and to be able to do things independently. Every day is a miracle for him.”
Helping others seek help
Motivated by the success story of their son, the Okekes set up ‘Kanyeyachukwu Autism Society’, a non-profit organisation dedicated to help meet the demands of autistic children.
The organisation developed a software application that helps parents navigate the process of getting special needs schools for their autistic wards.
Dr. Sylvia said,
“When we started, we wanted to have a centre and we found out that we will only cater for people where the centre is located. So, we thought of how to cater for any child anywhere and came up with this application that matches schools to special needs children and donors.
As a donor, you just click on the school and it gives you the number of children within two to three kilometers of the school. Some children may not be able to afford transportation to the school.
We just started with Abuja. We have some schools and we are just taking on children. Daily, we take on new children because we need parents to come. We are calling on parents to come; only parents that cannot afford therapy.”
I want my son to work with me — Father
Just like the Okekes, Mallam Ibrahim Mohammed, also found out that his son, Ilaan, was on the spectrum at the age of four.
The Abuja-based visual design entrepreneur said he discovered that his son was not really responding to any verbal communication. He said,
“He wasn’t very responsive. He doesn’t respond to his name or sounds. He doesn’t say any word and wasn’t really picking up at all. We did the evaluation and found out that he was on the spectrum.
We noticed on time because he has an older sister. So, when we compared him to his sister, we could tell that there were issues.”
Mohammed said he was initially shocked and struggled to accept the reality that Ilaan was different. He added:
“You will be in shock, almost in denial, because you will be like, I am not the one that would put up with this. It is not a one-off thing. It becomes a lifestyle.”
Meanwhile, part of the decisive steps taken by Ilaan’s parents was to withdraw him from a conventional school to a therapy centre.
Speaking on the lifestyle change that accompanied the discovery, Mohammed said,
“It’s something you almost immediately have to accept. Something as little as sleeping, and feeding, changes it all. Your lifestyle becomes about him. He is not like the regular child. He has violent tantrums and insomnia.”
The father also told PUNCH that it recently occurred to him, to help Ilaan build a career path in the same field. He said:
“He is ten now. I want by the time he is 20 or 30, he would be independent. I need to build a career path for him. I would like him to work where I am presently.”
This, according to Mohammed, is for close monitoring and to help him develop as a person.
“We are six years into the diagnosis and we have learnt to live with it. Some days are better than others. It is a gift and it’s best to live with it. It is not a burden that we have him.
Some days, he is the man of the moment and does special things that we are grateful for. At some point, he would fulfill his destiny,”
Mohammed said reassuringly.
Parents live in denial, confine autistic children to their home — Expert
Kanyeyachukwu and Ilaan are lucky to have parents who are keen on helping them get the best out of life. However, some don’t have the same opportunity,” the Director of Zeebah Foundation, Mrs. Marilyn Omuabor said.
She noted that some parents confine their children to a room, rather than help them get a treatment plan. She said,
“For these parents, their lives have been dented by this member of the family. I also feel it is some level of helplessness. As a parent, you feel pity for your child, knowing that the condition has no cure, and you are clueless. Thoughts like these are fueled by some wrong notions that people harbour in their minds.
I mean, it is really bad when you even have people attribute it to something you did wrong in life, a payback or something that you took while pregnant. There are so many wrong notions.”
She reiterated that children like Kanyeyachukwu that received support over the years are doing much better than those who have received no form of help.
She encouraged parents whose children are undertaking therapy to be patient as it takes time and may defy their expectations.
Mrs. Omuabor said,
“As much as it is difficult to see at the beginning of the journey, be hopeful. We have had children from our centres go to main school and today, they are excelling. But we do believe that all it takes is a bit of patience.
Parents come with high expectations and sometimes, they expect so much to happen in so little a time frame. However, the truth is that every child differs.
We can’t be at par intellectually. Some of us are smarter, sharper and better outspoken. It is a tough line. It is tough on parents and caregivers, but when you are able to get consistent support, there is always light at the end of the tunnel.
We have non-verbal children that came to the centre and today, they are speaking, writing and can relate. That is the first thing every human being should be able to achieve; communication and interaction with other people.
They don’t all have to be grade exceptional students, but even when they excel in certain subjects, they surpass the neurotypical kids.”
Leaving no one behind
The United Nations has set aside April 2, to be commemorated as World Autism Awareness Day, and this year’s theme is “Inclusive Quality Education for All”.
According to the UN,
“Panelists in last year’s event emphasised how crucial it is to foster inclusive quality education for people on the autism spectrum, so that they can fulfill their potential and achieve sustainable success in the labour market.
In this respect, inclusive education is the key to the transformative promise of the Sustainable Development Goals, to LEAVE NO ONE BEHIND.”
Speaking on this year’s theme, the director of Zeebah Foundation advocated for massive support for autistic kids, noting that the awareness runs throughout the month of April. She said:
“The main goal is for them to live independent lives and they can only achieve this by being supported intellectually and academically. So that in the long run, they go back to main schools.”
For a Registered Behavioral Technician, Oluwadamilola Alawode, no two autistic individuals share the same condition and that the disorder covers a large spectrum of symptoms and levels of impairment.
“The disorder affects information processes in different ways. One of them is the fact that it presents itself in the communication aspect of an individual where they are either unable to speak or have limited speech.
They are unable to initiate social interaction like others. They also have some challenging behaviours ranging from inflexible behaviours to inappropriate behaviours. These are various ways through which autism affects a child.
For some people with autism, you will find out that there are different levels of impairment. One of them is communication skill. We also have the social interaction skill and the behavioural skill.
In the communication skills, some will have words but are not functional; not able to use words. Some will have no words at all. They can communicate using gestures and eye movement but not vocally.”
Regarding social interaction, Alawode said it is hard for many of them to relate with their peers. The expert added:
“They engage in repetitive behaviour which is not functional. They do things over and over again without being creative about it.”
Asked about the exact cause of the disorder, Alwaode said it remains a mystery, despite a wide array of research works carried out on the condition.
“Different researches are ongoing on what is actually responsible for autism. There are studies saying it could be genetically related or it could be a condition that took place during childbirth.”
The behavioral technician, however, explained that the condition is not hopeless if the child gets the required treatment plan early enough.
“I have come in contact with some of them who are able to transition to a mainstream school. The important thing is early intervention and management. With that, they can function in the larger society,”