Persistent And Caring Mother Arms Herself With Knowledge To Help Special Needs Child

When Sasha Hill noticed her three-year-old daughter, Dejanae Gayle’s diminishing vocabulary, her maternal instinct told her there was a problem.

She said among the noticeable factors indicating there was an issue was the fact that after birth, she was not hitting her milestones as the “normal” child would.

“What was significant was that she started to hit her milestones at a reasonable time, but then she started to regress, meaning that she stopped speaking. She began to lose her vocabulary, she started to lose her words, until there were eventually no words,” she tells JIS News.

By age four, Dejanae had stopped talking. Her mother recalls a two- to three-year gap during which her daughter did not speak at all.

“As a mother, it is quite concerning because I knew that she had vocabulary. I knew that she had words and it is quite frightening to get up one day and find out that your child is not able to speak any at all, among other challenges that she would have had,” she says.

Ms. Hill tells JIS News her daughter was taken to several specialists in an effort to diagnose her condition.

“We were told she was just delayed, she was just slow, she wasn’t progressing like everyone else, but it was not something for us to worry about,” she says.

Dissatisfied with this prognosis, Ms. Hill embarked on a relentless campaign to get to the root of her child’s condition.

“I knew in my heart that something was wrong. Something was not adding up and I wanted answers, because without those answers I would not be able to help her,” she says.

“Perseverance is really what kept me going because I thought to myself she needed a champion and, outside of me, there is nobody else who could understand or would take up that mantle to help her,” the devoted mother adds.

Through extensive research, she discovered that through the Ministry of Education, Youth and Information’s Special Education Unit, the Jamaica Council for Persons with Disabilities (JCPD) and the Nathan Ebanks Foundation she could access professionals who were able to help her to come to an understanding of her child’s condition.

At age 12, she was officially diagnosed with Level one Autism and Attention Deficit Hyperactivity Disorder (ADHD) – Inattentive Type.

ADHD is a neurodevelopmental disorder most common in children and adolescents. Neurobehavioural means there are both neurological and behavioural components to the disorder.

In Dejanae’s case, her symptoms presented as extreme focus on time and dates, socially distant, lack of engagement with other children, refusing eye contact and cessation of speech.

“Knowing what to call it and knowing what it was, gave me a handle on the situation and [gave] me direction. Now I can find the information I am looking for to help her, because I now understand what it is I am looking at, which is the challenge she is faced with,” she explains.

Through sustained efforts by her family, Dejanae has made significant strides in regaining her speech. She is also excelling in her studies as a fifth-form student at Belair High School in Manchester.

This year, she will be sitting four subjects in the upcoming Caribbean Secondary Education Certificate (CSEC) examinations. These are Human and Social Biology, Information Technology, Mathematics and English Language.

She will also be sitting English Language and Mathematics in the City and Guilds examinations.

Dejanae will also be participating in the Human Employment and Resource Training (HEART)/NSTA Trust three-week HOPE Youth Summer Work Programme to gain work experience.

Ms. Hill is urging other parents not to label their child with the disability, as this puts limits on the child and the potential that can be achieved by children with special needs.

“I believe these children are here to teach us how to be humble and to really stop and open our eyes to really seeing the person… . There is so much potential and ability in these children. All they need is for someone to understand what they are going through,” she says, noting that children with special needs are no different from other children.

She is also encouraging parents to use every opportunity to inform themselves about their child’s disability and to advocate on behalf of their children.

“Accept that nothing is wrong with your child. They just need different help than another child. Acknowledge the situation and really advocate for not just your child but also other children with special needs,” she says.

Ms. Hill is the Founder of the ‘Super Parents’ support group, which provides access to resources for parents of children with special needs.

She is also a Board member of the Nathan Ebanks Foundation and public relations officer for the Central Autism Action Group.

Special emphasis is being placed on children as the nation celebrates May as Child Month, under the theme ‘I Strive to Overcome Adversities with Resilience (ISOAR)’.