Shenae Davis' children are everything to her and her husband, Keven Davis Sr. Their son Keven Jr. is their "bundle of joy" and a child with an infectious smile who displays his affection daily; their daughter Aneja is a precocious, shy child who aspires to be a special needs teacher. Both Keven Jr. and Aneja have special needs. Keven Jr., a five-year-old, falls on the autism spectrum as having pervasive development disorder. Aneja, 10, has a seizure disorder and dyslexia.
During April, internationally recognized as Autism Awareness Month, the Davis' encourage parents to know their children, and not wait for someone to tell them that something is wrong with their child. And, if parents think something is wrong with their child, the mother encourages parents to not be embarrassed.
"Nothing is trivial when it comes to your children and their wellbeing, so I would encourage parents to seek help early," she said.
Autism is a lifelong developmental disability characterized by difficulties in social interaction, verbal and non-verbal communication and repetitive behaviors. It is a spectrum condition. While all autistic people share certain difficulties, it affects them in different ways. The most obvious signs and symptoms of autism tend to emerge in toddlers between two and three years of age. The disorder is five times more common among boys than girls, and there is no one cause of autism, just as there is no one type of autism.
While specific numbers are not available for The Bahamas, autism affects one in every 68 children, according to the United States Centers for Disease Control and Prevention.
Davis said Keven Jr. met his early milestones, but she noticed that something was going on with her son around the two-and-a-half year mark.
"He just stopped playing with his peers. He started to isolate himself. He stopped talking," she said.
She recalled being told that she was paranoid because of what had transpired with Aneja (who was born premature at six-and-a-half months) and her developmental delays. Keven Jr. was also born premature at eight months.
"Persons didn't think as a young parent that I was qualified to discern that there was something going on, because the child looked so 'normal' and acted so 'normal'. Everybody was telling me that boys don't advance as fast as girls do, and to just give it time."
As a parent, she said she knew something was wrong and sought to have Keven Jr. evaluated. Medical professionals told her that he exhibited some of the autism spectrum disorders. To date, he has not had a full evaluation for the simple reason that he's only five.
Keven Jr., who cannot be characterized as a high or low functioning autistic child, falls in the middle. He has some speech and can manage to talk. He does not have any sensory issues. Most of the disorders that affect him include hyperactivity, social interaction and communication.
Dealing with an autistic child, coupled with another child who has seizures in her sleep and who they have to remain alert during the night to check on has made life less than easy for the Davis' coupled with maintaining their marriage and having to work 40-hours a week to support the family.
Challenging
"It's not easy. It's a challenge," said Davis. "You have a hyperactive child who you have to keep entertained and keep busy, and you have a child who suffers from epilepsy who has seizures in her sleep, so you have to be somewhat alert at all times to be able to deal with that at home."
Aneja is also on medication that slows her brain waves down to control the seizures, but which has resulted in dyslexia.
Davis said dealing with two special needs children means that daily they are faced with existing and new challenges. With limited resources in the country, the family often find themselves at a dead end as far as helping their children; issues include deciding who should get the help on one particular day, who should receive medication or who should get to go to school. She is also grateful that the populace is becoming more aware of the fact that autism is prevalent in the country and promoting its awareness is important.
"I think in The Bahamas we generalize special needs. I think everybody that's a special needs child they consider them to be mentally retarded more or less."
It's because of this misconception that she is grateful for REACH - the non-profit organization that, for more than 15 years, has been promoting autism awareness and education in The Bahamas and providing free services and resources for children and families affected by autism.
"We always point to the negative and don't look at the positive aspect of things. So while help is limited, we are receiving some help, and I would like to say thanks to the REACH organization and to encourage parents who have children they think may have a disorder - it doesn't have to be autism, it could also be other challenges related to autism - to come out to REACH and support REACH," she said.
In response to the need for autism training, REACH has historically devoted its resources to hosting programs that teach parents and caregivers how to provide quality care to those with autism. This year, the organization shifted its focus from training to therapy. With only four speech therapists employed at the Ministry of Education, and a long waiting list of children who need speech therapy and are unable to receive it, REACH hopes to raise funds to employ a full-time speech therapist and increase the availability of therapy to individuals who need it but cannot afford it.
"REACH is the only place where we get to be normal, because it's a meeting ground for parents who share similar experiences," said Davis. "We exchange advice; they provide us with resources as it relates to autism and related challenges. I know a few kids have been able to get screened and get therapy through the REACH program. They also assist with us learning and promoting the awareness of autism, because people need to know what it is and need to be able to deal with it," she said.
Prior to her son being diagnosed with autism and the diagnosis of her daughter's seizure disorder, Davis said she had never had any interaction with special needs children. Like all parents, she had to go through the denial phase to get to acceptance.
Denial and acceptance
"For every parent, the initial stage is denial. We all go through that denial phase where we question and we deny that there is something going on with the child. The second phase is acceptance, after you accept what is going on with the child," she said.
She said she is grateful also for the support system for her children from both her and her husband's family and Keven Jr's. teacher, Terri-Gaye Vassell, at Willard Patton School Pre-School's autism unit.
Davis is currently in a dilemma as she tries to identify a school for her son to attend with the advent of the fall school term. With the units at government schools filled and children having to be wait-listed, the mother said she and her husband have looked at a private institution for their child, but have found the prices exorbitant -- from $975 to $1,025 per month.
The tuition does not include additional therapies that Keven Jr. would require. She said it is money the family can't afford in its budget. But they have written to private entities in hopes that someone would offer sponsorship to her son. Uncertain whether Keven Jr. will get a place in a government school program, she said they just have to wait and see.
"We wait ... that's all we can do."
And in the meantime, she said she and her husband simply continue to love their children.
"Keven is my bundle of joy. He has an infectious smile. His energy level is out of this world. He does his best to express and show love to his family every day, and that is what I appreciate most. A simple hug or kiss can go a long way, especially for our children. My son displays his affection every day.
"Aneja is a precocious, shy individual. While she suffers from dyslexia, she has a sharp brain. You would think the seizures would cause memory retention, but my daughter, if you have a conversation with her, you would never know she has a reading disability. She aspires to be a special needs teacher, and I think it's an attainable goal. It's going to take her longer than that average child, but she will get there," she said.
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