Autistic kids can survive, chart great career paths, parents say
Often, parents whose children are diagnosed with autism, a lifelong neurobehavioral disorder, initially struggle with shock, fear and denial about the disease. This is usually followed by drastic lifestyle changes to meet the special needs of children.
ALFRED OLUFEMI writing about the journey of two parents facing the heavy demands that come with parenting children with special needs and how they remained resilient in repositioning them to face the future.
Kanyeyachukwu Okeke could barely speak like his peers when he was four years old. Physically he was fine, but communicating his needs and wants was a major challenge. Her mother, Dr. Silvia Tagbo-Okeke, was greatly disturbed by her non-verbal ability at the time.
Her concerns and curiosity led her to see a pediatrician and at first her fears that the boy had a developmental problem were dismissed.
“I found out that when Kanyeyachukwu was around four years old, he wasn’t achieving his speech goals. The other milestones were perfect. Of course, I was worried and took him to see a pediatrician. All this time, I never thought that anything was seriously wrong with him because the pediatrician kept saying he was still a boy. Other people also said he would talk and I shouldn’t be worried,” she told PUNCH Healthwise.
Kanyeyachukwu, affectionately referred to as “Kanye” by family and friends, was later assessed and diagnosed with Autism Spectrum Disorder.
The condition is a lifelong neurobehavioral condition that causes speech impairment and affects social interaction.
“The first thing that hit me was a creeping fear because when you google the disease you don’t see any cure, it’s all life,” said the Abuja-based ICT engineer.
Continuing, she said, “As a parent, you are scared. First you try to figure out the reasons why your son shouldn’t be on the spectrum. It is an extremely sad emotion. For a parent, you have to stand up for the sake of your child and say, I have to look for a solution.
Autism is a complex neurobehavioral disorder that can include impairments in social interaction, language development and communication skills. Due to the range of symptoms, this condition is called autism spectrum disorder. according to data published in 2018 by the World Health Organization, one in 160 children lives with the disease worldwide.
Dealing with an autistic child
After accepting her son’s medical condition and the fact that he cannot be managed and not cured, Dr Sylvia said that she enrolled Kanyeyachukwu in Zeebah Place Abuja, a preparatory therapy and education facility. in Abuja.
She told PUNCH Healthwise that making the decision was a harsh reality that she embraced.
She said: “Mentally, as a parent, you have to say that’s my reality; my way of life. You do not have the choice. These children have been placed in your hands for your care.
“You have to start looking for solutions and interventions from people who will help you and from schools that will accept your son. You start talking about your son so others know that being different isn’t bad.
“You go to groups on social media to find people with the disease. You read a lot because autism is a spectrum. You do research because what works for Mr. A may not work for Mr. B, and you need to talk to people who have been through the process.
“All of this involves a lot of work. You also need to hire experts to work with your child, such as a speech therapist and many others.
Kanyeyachukwu’s mother recalled how she conducted an extensive search for the best therapy center for her son and decried the low availability of centers across the country.
“In Lagos and Abuja, we have quite a few, but when you go to states like Ogun, Osun, Edo, Adamawa and Katsina, it’s a challenge because those people don’t have any resources at all,” she said. added.
Over the years, Kanyeyachukwu, now 12, developed obsessive behavior that the family had to put up with.
According to his mother, “the trigger for Kanyeyachukwu was just the talk. He did not speak and for autism the behavior was not consistent as they adopted other behaviors along the way. They can start without obsessive-compulsive disorder, and then, maybe at 10 or 11, they’ll pick it up again.
“There are low days where they are just depressed, throwing tantrums. Something can trigger it, so you need to know what it is and try to make it comfortable. He cries and laughs for no reason,” she added.
Dr Sylvia said that since there was no plan to follow, she had to keep changing like her son had, adding that Kanyeyachukwu’s siblings also had to make constant adjustments. .
She said, “I talked to them about taking responsibility for Kanyeyachukwu because I won’t be here forever. I will have to leave them one day. I also have to prepare his siblings. People like him are very vulnerable and innocent. Society must protect them. That’s what I tell his brothers and sisters.
Break down barriers to become a marvelous artist
In every challenge lies a blessing in disguise. And this saying played out in the life of Kanyeyachukwu, who despite his autistic status was able to excel as an extraordinary artist.
PUNCH Healthwise learned that he started painting at the age of five and received the prestigious “Peace Torch Award”, an acknowledgment given to him by the Association for the Promotion of Peace Global, an Austrian non-profit organization.
In recent years, Kanye has held two exhibitions in Abuja and Lagos, and his works have been exhibited in several exhibitions overseas.
“Kanye pretty much told us what he wanted to do. He kept drawing everywhere. He just started it. It’s Kanye’s unique story. Luckily, someone saw his artwork and went realized that she was really good and advised us to support him until the end. That’s how it started, ”said his mother, beaming with a smile.
She, however, said he found it difficult to concentrate on anything other than painting.
“When you put a palette, knife and pen in front of him, he can paint for hours and stay focused. For Kanye, art is a way of expressing himself; he speaks loud and clear through his art,” she added.
The Okekes are optimistic that Kanye would become a renowned artist.
“I just want to see him improve every day in his art, his speech and his social interactions. I want him to be able to help himself and to be able to do things on his own. Every day is a miracle for him,” his mother said.
Help others seek to help
Motivated by their son’s success, the Okekes created the Kanyeyachukwu Autism Society, a non-profit organization dedicated to helping meet the demands of children with autism.
The organization has developed a software application that helps parents navigate the process of obtaining specialist schools for their autism services.
Dr Sylvia said: ‘When we started we wanted to have a center and we found that we would only treat people where the center is. So we thought about how to support any child anywhere and came up with this app that matches schools with children with special needs and donors.
“As a donor, you just click on the school and it gives you the number of children within two or three kilometers of the school. Some children may not be able to afford school.
“We have just started with Abuja. We have a few schools and we only take children. Every day we welcome new children because we need the parents to come. We call on parents to come; only parents who cannot afford therapy.
I want my son to work with me — Father
Just like the Okekes, Mallam Ibrahim Mohammed also discovered that his son, Ilaan, was on the spectrum when he was four years old.
The Abuja-based visual design entrepreneur said he found his son really doesn’t respond to any verbal communication.
He said: “He wasn’t very responsive. He does not respond to his name or his sounds. He said nothing and didn’t answer at all. We did the assessment and found he was on the spectrum.
“We noticed in time because he has an older sister. So when we compared him to his sister, we could tell there were issues.
Mohammed said he was shocked at first and found it hard to come to terms with the reality that Ilaan was different
“You’ll be in shock, almost in denial, because you’ll be like, I’m not the one who would put up with this. It’s not a one-time thing. It becomes a way of life,” he added.
Meanwhile, part of the decisive action taken by Ilaan’s parents was to remove him from a conventional school to a therapy center.
Speaking about the lifestyle change that came with the discovery, Mohammed said: “It’s something you have to come to terms with almost immediately. Something as little as sleeping and eating changes everything. Your lifestyle becomes about it. He is not like the ordinary child. He has violent tantrums and insomnia.
The father also told PUNCH Healthwise that it recently occurred to him to help Ilaan build a career path in the same field.
“He is ten years old now. I want him at 20 or 30 to be independent. I have to build him a career plan. I would like him to work where I am now,” he said.
This, according to Mohammed, is for close supervision and to help him develop as a person.
“We are six years after the diagnosis and we have learned to live with it. Some days are better than others. It is a gift and it is better to live with it. It is not a burden that we have it. Some days he is the man of the moment and does special things that we are grateful for and at some point he would fulfill his destiny,” Mohammed said reassuringly.
Parents live in denial, confine autistic children to their homes — Expert
Kanyeyachukwu and Ilaan are lucky to have parents willing to help them get the most out of life. However, some do not have the same opportunity,” said the director of the Zeebah Foundation, Ms. Marilyn Omuabor.
She noted that some parents confine their children to a room rather than helping them get a treatment plan.
She said: “For these parents, their lives have been turned upside down by this family member. I also think it’s a certain level of helplessness. As a parent, you feel pity for your child, knowing that the disease is incurable and you have no idea. Thoughts like these are fueled by certain wrong notions that people hold in their minds.
that, they can function in the wider society,” Alawode added.
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