‘Parents needed psychological help, too’

Taking care of children is not always a simple task, and it can be especially difficult when that child has been diagnosed with a developmental disorder like autism.

Autism spectrum disorder (ASD) is a complex developmental disorder caused by differences in the brain that impacts an individual’s social communication and interactive skills.

It has been an uphill battle for Kadian Bartley, whose six-year-old son, Ka’Shanie Lloyd, is non-verbal.

Young Ka’Shanie was diagnosed with ASD in September 2019 and is in need of speech therapy, a necessity that his mother, a teacher by profession, just cannot afford.

In a recent interview with The Gleaner, Bartley discussed how overwhelming it can be for parents to ensure that their young ones do not fall behind academically, especially those living in rural Jamaica, as it even more difficult to locate accommodating and inclusive schools for children with special needs.

Ka’Shanie also has a weaker sense of danger and tends to wander if not monitored and, as a result, requires a shadow while at school.

A shadow is a teaching aide who works closely with students who have learning differences in order to enhance their experience in the classroom.

Being a parent – according to the mother of two, whose first child is 19 years old – is a full-time job; yet she has managed to teach Ka’Shanie in her leisure time at home by incorporating picture cards, number cards, and storybooks, especially those with animals, which he enjoys.

She also frequently searches the web for instructional content and keeps abreast of autism-related information.

“A lot of the things that he’s doing [in school] is what we do at home. Daddy and I do a lot of things at home with him, and then we just share it with his teacher, [who] will try to accommodate him and she will set a different test for him,” she said of Ka’Shanie’s enrolment at an institution that lacks a special needs department.

Many parents, she noted, were unable to teach their kids in the same way that she does because they lacked education, resources, finances, and most importantly, the time to conduct in-depth sessions with them.

“It is very hard for us down here to find a place to send our children,” she said, while lobbying that more schools become equipped to accommodate autistic children and for an increase in the assessment of children who are classified as slow learners, as this may be an indication of intellectual disability (ID).

“There are about 30 of us in the [WhatsApp] group and everybody has school issues. Nobody wants to take the kids, and a lot of us in the group, we don’t have the money to spend to send our children to schools that can cater to these children,” she said.

Living in St Ann, Bartley said that the only institution in the parish that caters exclusively to autistic children is the Edgehill School of Special Education, which is located in St Ann’s Bay. The Ocho Rios Primary School, she said, was also the only public school with a special needs unit.

“I don’t think they put enough effort in us getting the assistance or even to check up on to find out if our children are in school and how our kids are coping,” she said of the education ministry.

Like several other parents, she is hoping that the situation will change as the disorder takes the spotlight in April, which is celebrated as Autism Awareness Month.

Speaking with The Gleaner last Friday, Verol Billett, clinical psychologist at Caribbean Tots to Teens, stated that parents are commonly encumbered by the psychological toll it takes to care for their children while also keeping tabs on their own mental well-being and remaining sensitive to their child’s needs.

He expressed that once a child has been diagnosed with autism, the parents typically begin to worry about how the child will cope and function independently in a world around them that views them as different and stigmatises them.

“Parents begin to think, ‘Oh my God! What am I supposed to do? Where will I get the help? Will my child get better? Will my child grow out of this?’,” he said.

This was true for Bartley, who admitted that at first, she had put on a brave face, but would be worried deep down inside.

But one day, while on the phone with a regional director who assisted her with getting her son into school, the tears began to flow.

“I said one word, and that was the day that the tears came for the first time. I literally bawled,” she told The Gleaner.

She said that she would never judge a parent for having a meltdown because she knows how hard it was, adding that parents needed psychological help, too, as “frustration will let you do bad things”.

Bartley admitted to having moments where she wished her child was neurotypical.

“I am human and I hurt, ... but then I look on the brighter side and I say, he’ll get there one day,” she said.

Christina Silvera is a licensed associate clinical psychologist, who started a social skills group for children between the ages of 12 and 16 who have been diagnosed with ASD level 1 and can communicate verbally.

She said that through her professional observation and research in the field, there has been a discernible rise in anxiety and sadness among adolescent girls who did not have any neurodevelopmental disorders. For the boys, there is a decline in motivation and an increase in aggression levels.

“And so, when you add the neurodevelopmental aspect of it, which is autism, I was seeing where there was an increase in these symptoms, so there’s more dysregulation, which is the ability to manage and work through these feelings and then there was, in high school, this feeling of loneliness and isolation,” she said.

She added that the group therapy session serves as a safe space for the teens to learn social skills, emotion-regulation skills, and how to cohabitate within an environment with people who have similar experiences.

asha.wilks@gleanerjm.com