For the parent of a child with special needs in T&T, the questions are endless and support services are notably absent. After a child is diagnosed with a disability, the overwhelming responsibilities and the confusion which accompany them create a stressful time for a parent.
This is why the Caribbean Kids and Therapy Organisation (CKFTO) regards the services it offers as invaluable.
The CKFTO is a non-profit organisation founded in 2008 and aimed at providing support and therapeutic services to children with special needs from birth to the age of 21. It provides pediatric assessment and treatment for children with developmental, physical, communicational and cognitive challenges and offers subsidies to families that meet its criteria.
Among the services offered are occupational, music and aqua therapy, consultations, parental coaching and support for siblings of children with special needs.
Talking to the T&T Guardian at the CKFTO office on Vidale St in St James, chairman Elizabeth Aleong said the services it offers are desperately needed–especially in a country where ignorance and indifference about the disabled is very much commonplace.
In May of this year, the CKFTO in partnership with Repsol and the National Centre for Persons with Disabilities, launched its Social Integration of Persons with Disabilities Campaign. The year-long campaign is aimed at increasing disability awareness among all citizens–from the pediatric population to adults. Aleong said one of the objectives of the campaign has been to challenge people's perception of what a person with special needs looks like.
"We all have stereotypical images of what we think a disability looks like–someone in a wheelchair, someone who is blind. But I could have disability and you wouldn't know. This campaign really asks you to open your mind and to discover the ability in disability."
She said the CKFTO hopes to help create a T&T in which people with special needs are fully integrated into the workplace and schools and are allowed to participate fully in all that is offered socially.
Assessment andOccupational Therapy
The CKFTO offers one-on-one occupational therapy to children with special needs. This involves specific activities geared towards helping them to achieve a maximum level of independence and inclusion in everyday activities. Occupational therapist Christopher Ristic said when a child comes into the CKFTO, he evaluates his or her body movements, coordination and awareness as compared to what is developmentally appropriate for that age. Fine motor skills are assessed by observing how the child plays with small objects like buttons, playdough, building blocks, pencil grips and puzzle pieces. Fine motor skills generally refer to the small muscle movements of the hands, wrists and fingers. He then takes clients to the gym area where he assesses the gross motor skills that enable whole-body movement like walking or jumping. Ristic's clients include children with cerebral palsy, down syndrome, learning disabilities and other developmental disorders. After assessment, he prepares a report for the child's parent outlining the details of the evaluation and the objectives of the therapy sessions.
The CKFTO defines music therapy as a holistic technique that uses music as a tool to restore, maintain and improve a chid's physical, emotional, social, cognitive and psychological well-being. The T&T Guardian sat down in the music therapy room with clinical supervisor and music therapist Maya Chriqui who explained some of what goes into her sessions. She said music therapy helped children with special needs to work on their communication skills, focus, physical strength and self-esteem in a way that doesn't feel tedious.
"For kids with poor hand movements or weak fingers, playing the guitar allows them to work on individual fingers so in that way they strengthen their fingers while making music. So they're not really thinking that it is work. They're playing and have a good time."
Music therapy also helps children academically. While she doesn't teach them how to write, Chriqui said kids are much more motivated to hold a pen, pencil or crayon when they are writing their own songs. By playing the piano, the suspension of the elbows helps them to build the shoulder strength they need to write for longer periods.
She works with children with autism, learning disorders and cerebral palsy and teaches them communication skills through song.
She said: "Music is the pre-cursor to language and it stimulates all their senses at the same time. Kids will learn melodies and rhythms and this helps them to coordinate their oral-motor planning so their mouth can produce the sounds they need to make words."
Music also helps to stimulate cognitive development and improve memory skills through repetition and sequencing so Chriqui uses songs to help children remember their address, telephone number, or how to dress themselves. Each music therapy session starts with a "hello song" in which Chriqui and the child take turns singing hello to each other. The session closes with a "goodbye song". In this way, kids learn basic social skills as well as the concepts of call and response and taking turns. She said for children who are still developing their language, music is sometimes the only way of communicating their wants and needs.
"So if a child is playing something on the piano," she said, "sometimes I'll match the rhythm or the melody that he's playing and support him musically. Now he feels validated, he feels he is being heard and understood. They have instant gratification through playing instruments because now we can have an entire conversation through music."
Her therapy sessions last up to 50 minutes during which she says a child's hyperactivity is converted to relaxation and focus. Chriqui then talks to the child's parents and offers feedback before documenting her work.
Count Me In Puppet Show
The Count Me In puppet show is a CKFTO programme which features seven child-size puppets that portray children with disabilities. It is designed to clear up some of the myths and misconceptions about people with disabilities. The CKFTO bought the patent to the puppet show from the Parent Advocacy Coalition for Educational Rights (PACER) Center in the US which offers information and training to families with disabled children.
Puppet co-ordinator for the programme Natasha Babwah said the CKFTO has separate scripts for pre-schools primary schools. The pre-school script, which is 30 minutes long, features Asha who is blind, Mark who is deaf and Anna who has cerebral palsy as well as the main characters Sheldon who has a learning disability and Preeya who has epilepsy. The primary school script is 50 minutes long and features two additional puppets–Shane who has down syndrome and David who has autism.
The CKFTO has already begun taking the puppet show to pre-schools and primary schools around the country and Babwah says the response from students has been heartening.
"The teachers are always surprised that the pre-school children actually sit captivated for that length of time. It's so difficult to keep so many children quiet for half an hour. The first school we went to, there was just a burst of energy. They were so into the show and they were asking so many questions in between."
She said CKFTO had discovered that the puppets were an effective way of communicating ideas of inclusion and acceptance to young children. The Count Me In puppet show will be featured at many of the free camps hosted by the Sport Company of T&T this July and August.
For more information on the CKFTO, call 628-3268 or visit its website at www.ckfto.org