There was a time when, if your child was born with autism, a learning disorder or cerebral palsy, they would have a very good chance of ending up in an asylum or in jail or on the streets as an adult. But, with greater and greater education about ‘special needs’ kids has come the tools to not only help these children survive but to help them function as normally as possible within society’s parameters. This is where paediatric occupational therapy comes in and how the Caribbean Kids and Families Therapy Organisation (CKFTO) has become a lifeline for many special needs children and their families. “In 1996, the Ministry of Education’s statistics showed that 32 per cent of children in our school system are behaviourally and physically challenged,” said Elizabeth ‘Liz’ Aleong, CKFTO’s chairperson. “The World Health Organisation also says that 10 per cent of any country’s population is living with disability. And we’re still just talking about this.” She shifts often in her chair, leaning forward for emphasis across her calmer colleague and vice-chairperson, Sofia Figueroa-Leon; clearly excited to get the word out about the hope that special needs children now have.
Harry Potter star Daniel Radcliffe has dealt with sensory perception disorder all his life, Aleong said, but is managing after his parents made sure that he’s had rigorous therapy for most of his life. Stephen Spielberg is autistic; Agatha Christie had dyslexia. All these successful people managed to work past their disabilities and do great things. But here in T&T, both public and institutional awareness of special needs persons and how to help them is incredibly low. According to Aleong and Figueroa-Leon, there are no paediatric occupational therapists in T&T’s public health care system, although there may be one adult occupational therapist, so that the public health care system is ill-equipped to diagnose or to treat persons with special needs, if these statistics are correct. Up to press time, despite official requests, the Ministry of Health Media and PR department did not confirm or deny these assertions.
“So it doesn’t matter what strata of the society you come from. Our health care system is not equipped to handle this. Parents of children with special needs still have to come to us,” Aleong said. The CKFTO recently moved from a borrowed space in Petit Valley to its own offices at Vidale Street, St James. This expansion happened just in time for the NGO to provide more a modern assessment and occupational therapy for approximately 70 special needs children per week. There is also a small satellite centre in D’Abadie using part of the Autism Society of T&T’s facilities where another occupational therapist works.
CKFTO’s child clients have a wide range of conditions: children with cognitive delays (delays in learning and thinking compared to others of the same age), with autism, with vision or hearing impairment, to children with Down’s Syndrome, dyspraxia (The brain's inability to plan muscle movements and carry them out) and those who use wheelchairs all come here for therapy.
Under Aleong and Figueroa-Leon, the CKFTO intends to push public awareness and education about special needs through outreach. The NGO also wants to become multi-disciplinary; right now, clinical director and occupational therapist Sara Stephens uses two fully equipped gyms and a smaller workspace to help children learn gross and fine motors skills, to practice coordination and communication among other skills. For example, the ball pit helps children who can’t process touch properly because it immerses them in stimulation. But the CKFTO wants to include other kinds of therapy and make them available to their clients, like music, animal, water and equine therapies.
Teacher training is also on the agenda, since in many cases, it is in school that special needs issues become apparent. A child who can’t seem to sit still, or is very easily distracted or can’t get those numbers and letters right may be special needs, and teachers who have not been trained to pick up the signs can relegate that child to the ‘slow’ or ‘undisciplined’ pile without ever realising that that child needs specialised help.
In fact, it’s easy for parents themselves to miss the signs that their child might be special needs, especially if he or she looks ‘normal’. Aleong’s second son, Allastair, did look normal; but he was always unusually hyper-active and couldn’t talk or make eye contact by age two. But everyone told her that he was just mischievous and would settle down eventually. It didn’t go that way, especially since she was juggling the toddler and a new baby. “One day I almost had a meltdown. The house was trashed. Everywhere he went he’d pull down things. And because he couldn’t communicate with me, he’d throw tantrums. So I was just following him around with a baby in my arms, trying to stop him from destroying the place and I finally said to myself, ‘I’ve had enough. This isn’t normal.’”
And it wasn’t, according to Aleong’s paediatrician and according to the psychologist who later evaluated Allastair. He was diagnosed with sensory perception disorder or dyspraxia; his brain couldn’t always communicate with his muscles to tell them what to do. Picking up a piece of birthday cake to cram it into his mouth, something that most two year olds have no problem doing, was a hit-and-miss exercise for Allastair. And talking was nearly impossible, as was non-verbal communication. A year of intensive speech therapy sessions in Canada, as well as occupational therapy at CKFTO has transformed Allastair into a talking, interactive five-year-old today.
“Once we knew what it was, we could deal with it,” Aleong said. “It was a relief to finally understand and then to figure out how we could help him. You should not ignore your instincts as a parent; you have to check that your child is passing his or her milestones.” Figueroa-Leon’s story is different; her 21-year-old daughter has cerebral palsy and has been confined to her bed all her life. But since she was born in Venezuela, a myriad of therapies, including music, equine and speech, were available to her, her mother said, even though not much progress has been made. Since moving to Trinidad, Figueroa-Leon became part of the Hispanic Women’s Organisation of T&T and then part of CKFTO because people need to be made aware that children and adults with special needs are not throw-aways.
“Just because I can’t walk doesn’t mean that I can’t think,” she said.
“I would love to be able to see my daughter make progress as Liz’s son has. And so many other children out there have that chance. My dream for Trinidad is for us to have an enormous clinic with a pool, five therapists for every child, with music, a petting zoo and equine therapy.” To do this, both public and private sector help is needed. Private sector donations have made it possible so far for the CKFTO to function; the new premises were donated and renovated for them by Palm Tree Investments. New gym equipment was provided by the United Way and assessment tools donated by Repsol. And JB Fernandes provides the services of the satellite therapist in D’Abadie. And since persons who want to study occupational therapy cannot do so anywhere in the Caribbean, the CKFTO is on a drive to educate people about the field, get them qualified and back home to T&T where their services are desperately needed.
Support groups for parents and siblings of children with special needs are part of the package. And they’re also planning for a visit from the Count Me In disability puppet programme from Minnesota as part of their public awareness campaign. The life-size puppets all have certain disabilities—cerebral palsy, autism, in a wheelchair—and teach school-age children about how to include special needs friends. “We would love to have satellites in San Fernando and in central Trinidad,” Aleong said. “But we’re just a small piece of the puzzle.”
