The Tribune

By JEFFARAH GIBSON

Tribune Features Writer

jgibson@tribunemedia.net

WITH only few avenues offering affordable care and educational support for children with autism in the Bahamas, parents of two-year-old Santahj Forbes are struggling to make ends meet while providing their son with the treatment he requires.

Autism, or autism spectrum disorder, refers to a range of conditions characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication, as well as by unique strengths and differences. There are many types of autism, believed to be caused by different combinations of genetic and environmental influences.

According to REACH, a local autism awareness charity, the disorder appears to be one of the "fastest growing" developmental disabilities affecting Bahamian children.

Since Santahj's diagnosis, his parents, Santana and Whittia Forbes, had to readjust their lives to provide everything necessary for the toddler's treatment, which has been an extremely expensive endeavour so far.

The family is now getting ready to host a medical cook-out on September 30 to assist with the therapy sessions and neurological evaluations Santahj was recommended to receive. It will be held at the Johnson Road Basketball Court from 12pm to 6pm. They are hoping to raise $15,000.

Santahj was diagnosed with autism on July 13, 2017 at the Emory Autism Centre in Atlanta, Georgia. Mr Forbes said he and his wife realised that something was wrong with Santahj when he was about 10 to 11 months old.

"We took him to a few paediatricians who all stated we should wait a while because boys take a longer time to develop than girls, and that we should just give him time because he'll eventually come around. My wife was not satisfied with their response so she decided to do some research on the behaviours exhibited by our son, and based on that research she came across autism spectrum disorder," said Mr Forbes.

"His mom noticed that he wasn't meeting certain developmental milestones for his age and he would exhibit behaviours that we both found weird, for example walking on toes, lack of eye contact or totally ignoring you if you would call his name."

A few months after his second birthday, Santahj's parents decided to get a consultation from the Seahorse Institute in Nassau. There, they were told that Santahj may be on the spectrum, but an autism evaluation was needed for a definitive diagnosis.

"Since then, we have been back and forth with paediatricians, an audiologist and an ENT physician to eliminate any possible medical issues that may contribute to his delays," said Mr Forbes.

After exhausting all avenues locally to find the right treatment and educational support, his parents came across the Emory Autism Centre in Atlanta, where Santahj was eventually diagnosed.

"Based on his diagnosis of level 2 autism, he was recommended to undergo 25 to 40 hours intensive applied behaviour analysis (ABA) and speech therapy weekly, 12 months a year. The only therapy sessions he has had was 10 hours intensive ABA therapy at the Emory Autism Centre last month. As of late, he hasn't had any ABA or speech therapy as they are all booked for months. Government-operated programmes for speech therapy has a waiting list for several months and we were told that they cannot state when they would even get to assist Santahj," said Mr Forbes.

The concerned father said they were advised that Santahj has a high chance of improvement as he is still very young and receptive to learning and interaction.

"In order for this to be possible he has to have regular therapy sessions and everything learned in therapy has to be reinforced at home. So its not just a quick fix. We all have to work together to help him, from the therapist to my wife and I, our older son, his school and our family," said Mr Forbes.

Juggling life's responsibilities, including raising their other son, six-year-old Santana III, and meeting the financial obligations of Santahj's treatment has been a major burden on the family. Currently, speech therapy averages $100 an hour while ABA therapy costs $70 an hour.

"It's hard to juggle your day to day life, utilities, basic care for your kids - which includes food, clothing and shelter - all the while having the burden of autism on your shoulder," said Mr Forbes.

"Marriages and families are hurting and struggling to make ends meet, and there is no relief; no assistance. In order to take our son abroad we had to host a fundraiser. My wife wrote to various companies and organisations for assistance and they all, except two, Arawak Port Development and Ronald Atkinson & Co, have hit us with that famous line, 'We don't sponsor individuals, only major companies'.

"This journey with our son has been a challenging one. When we returned home since his diagnosis in July, we have sought both ABA and speech therapists. They are booked for months, both private and public."

However, the Forbes family remains hopeful that Santahj will get the proper therapy and educational support he needs.

"We know it won't be easy; it was not not intended to be. Through it all, however, our son will prevail and he will overcome, because we won't give up," said Mr Forbes.