Mother finds a voice in struggle with special needs daughter

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

She stated that, among the noticeable factors indicating there was an issue, was the fact that, after birth, her daughter was not hitting her milestones as the ‘normal’ child would.

She added: “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.”

By age four, Dejanae had stopped talking.

Her mother recalled 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,” she said. “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.”

The child 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,” the mother said.

Dissatisfied with the prognosis, 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 reasoned.

“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.”

Through extensive research, Hill discovered that she could access professionals through the Special Education Unit at the Ministry of Education, as well as through the Jamaica Council for Persons with Disabilities, and the Nathan Ebanks Foundation.

Her daughter, at age 12, was diagnosed officially with level one Autism and Attention Deficit Hyperactivity Disorder (ADHD) – Inattentive Type.

The child’s 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,” the mother said. “Now I can find the information I am looking for to help her, because I now understand what it is I am looking at.”

Through sustained efforts by her family, the child 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.

She, this year, will sit four CSEC subjects administered by the Caribbean Examination Council (CXC). Those subjects are Human and Social Biology, Information Technology, Mathematics, and English Language.

Dejanae will also sit English Language and Mathematics in City and Guilds examinations.

She intends to gain work experience by participating in the government’s three-week HOPE Youth Summer Work Programme.

Her mother, in the meantime, urged other parents not to label their child with the disability, adding that such label places 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…” she commented.

“There is so much potential and ability in these children. All they need is for someone to understand what they are going through. 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 said.

Hill is now 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.

Editorial Note: The information in this story was provided by the state-owned Jamaica Information Service.

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