Liberia: Parents of Autism Kids Urge to Care for their Children
Monrovia – Benita Carter has a little boy living with autism; this three-year-old kid cannot talk, sit, stand or walk as other normal three-year-olds do.
Report by Mae Azango, [email protected]
Benita looked surprised when she entered the Peace Café, and saw mothers with children, who have similar conditions as her son. All of them had gathered to get knowledge as to how to help their kids.
“My son was not born with this condition. Six months after his birth, he got very sick with high fever and started conversing. We took him to hospital; he came through but turned out this way. We took him to another hospital and were told he was born with autism. I was still not convinced; I was sent to a rehabilitation clinic in the Du Port Road community, I was again told that my son is an autistic child,” she narrated.
There is no statistic on the number of children born with autism in Liberia. Benita and those mothers are among many parents, whose children are born with the sicknesses, including Down syndrome and they do not know how to deal with their kids.
Benita stated how difficult it is providing care for a child or children with such conditions; adding: “Sometimes I feel downhearted and want to give up. He cannot walk, sit or talk; I do his feeding. JFK registered him in chronic care and gave me drugs after every three months to stop the seizures.”
She had to stop at the junior level at a university just to pay more attention to him. According to her the hospital encourages her to be patient as she looks after him.
The person behind the gathering at the Peace Café is Mrs. Agnes Fallah Kamara. Mrs. Kamara had studied autism in order to deal with such cases. She filmed a movie — the Rain Man — for the parents, to help them live with their kids.
She pointed out that autism and down syndromes are disabilities, too, but people ignore they exist.
She narrated that her interest for kids living with autism and Down syndrome became heightened when she met a Kenyan lady who had a son living with autism. At that time, she (Anges) was attending a Hilary Clinton two-year fellowship in the USA.
“I did not know what autism was in 2014, so I read about it to be able to help my friend. When I came back to Liberia and saw so many people living with autism, I decided to go back to the USA to study autism to raise awareness. I have found out that many parents do not have support system to train their kids living with autism and they do not have a facility to carry them; they face the burden,” she stated.
To help these mothers deal with their children, she has established an eight-to-nine-hour program for the kids while their mothers do other chores.
“We will have a support group doing once a month training for the mothers so that when they go home, they can be able to deal with their kids. Every kid with this disability is not all the same; we have the low and high severity. We are going to teach each and every mother depending on their child’s disability,” she promised.
According to her, even though there are no known data on the number of kids living with autism in Liberia, in the Paynesville area, alone, her organization interviewed at least 25 mothers. She indicated that going across the country will overwhelm her program.
She disclosed that the funding for the present autism classroom was provided by Vice President Jewel Howard Taylor and Mr. Nathaniel Barnes, whose son, the classroom is named in honor.
The class will be conducted at the Abundance Grace school, located on the GSA Road.
The school is fenced, which is good as the kids won’t wander outside.
Mrs. Kamra looks to UNICEF, the Ministries of Health and Education for more support for the special-needs children.
She added: “I have gone around trying to see both Education and Health Ministers, but it is difficult.”
Her reason for wanting to see them, according to her, is because the Disability Act does not have autism and Down syndrome in it, but only the physical aspect. “I will be asking them to include them into the Disability Act,” she added.
Also speaking, Mr. Nathaniel Barnes, who is a former Finance Minister, disclosed that he has a 28-year-old son, Zwannah Milton Barnes, who lives with autism. He noticed Zwannah having speech impairment when he was two.
“It is very difficult to work with a child living with autism because they take up much time of the family and community. Zwannah is highly functional but his biggest challenge lies in his speech. Children living with autism can be useful, too. When our son was here, he went to the AMEU library three times a week to pack books and work on his laptop. I came to share with people who live with children with autism. There is light at the end of the tunnel once you learn to cope with the child,” he advised.
Mr. Barnes, who was also Liberia’s Ambassador to the US, further said autism is common in Liberia and it is treated as societal taboo in the country. According to him, because of ignorance, people refer to these kids living with autism as witches.
He believes that it will take a lot of awareness for people to accept children living with autism and down syndromes.
He praised Mrs. Kamara for starting a classroom for autistic kids and their parents, who would be trained.
Barnes said autism comes in different forms and spectrum, so there are signs people should look for to detect if their kids are autistic.
“You have to listen to their speech; most especially when they are at speaking ages. You will also notice that they do not make direct eye contact with people. At times, they are caught in minute details. For example, I have seen a kid with autism, who was trying to count the grains of sand and put it in order. They are just obsessed with these kinds of things,” he further explained.
He and his wife have decided to put all of their support behind Mrs. Kamara, whom they believe put in energy in what she is doing.
Other speakers, including Cllr. Yvette Chesson Wureh also shared their testimonies of living and managing autistic kids.
“My son is autistic and I nearly fought a doctor who suggested I let him die instead of spending so much money and many hours of surgery to save his life. I told the doctor to allow his own daughter to die, but not my son. Now, he is 40 and doing great. If I had listened to that doctor, would I have my son today? So I say to you parents, do not value money more than your child’s life,” Cllr. Wureh explained.