Bridging the gap
he simple joy of being recognised by his son when he walks in the room is something Brian Purvey is being robbed off.
His two-and-a-half year-old son Tristen has autism.
For Mr. Purvey there is a heart-breaking lack of communication and recognition from his own son, which makes it virtually impossible for him to even enjoy a game of kicking a ball around with Tristen.
As soon as the youngster's attention becomes distracted towards another object it is as though the ball and his father do not exist.
Similarly, when Mr. Purvey enters the same room as his son he is afforded no more recognition from Tristen than is given to any other stranger.
"I'm just another person. There seems to be no recognition, but I'm his father and it is very difficult. He is not communicating, that's the biggest problem between Tristen and my wife and I," he said.
"We are being robbed as parents of dealing with a normal child. I can't go out and kick a ball with him, all he needs is for something else to catch for his eye."
The Mount Saint Agnes Academy teacher and his wife Jenny will be among those taking part in a charity walk around the Botanical Gardens on December 11 to raise awareness of autism and to help build funds for the Island's support network the Bermuda Autism Support and Education Society.
The psychiatric disorder autism shows up in childhood as a marked deficit in communication and social interaction and a preoccupation with fantasy, language impairment, abnormal behaviour and excessive attachment to certain objects.
The Purveys spend around $3,500 a month to get as much therapy treatment as possible for their son, in the hope that it will make a difference to his early learning years and give him a chance to overcome the worst aspects of the autism disorder.
"A lot of it has to do with intervention, catching it early and learning what to do," said Mr. Purvey, who works two jobs to help the family afford therapy treatment for Tristen.
"We don't want to be the people at the end of the day who say 'what if'. We can at least say we have tried. It is unfair for those people who can't spend that kind of money on an autistic child."
The Purveys first suspected that something was amiss with Tristen last year. He didn't seem to react to sounds or people the way a normal child does. The phone would ring, a door would slam but Tristen would not react.
He had treatment in case it was simply blocked ears but that didn't make any difference and, with doctors in Bermuda believing it likely to be no more than a case of late development, the Purveys eventually travelled to the US where their son was finally diagnosed with autism last July.
While still in his formative years, Tristen should be able to learn how to overcome aspects of the disorder. But to do so it is recommended he has 20 hours of therapy treatment each week. In Bermuda the family has only been able to secure one hour a week of speech therapy through Child Services and a further hour of behavioural therapy.
By using their own money they have been able to secure a further 15 hours of therapy for Tristen, at a cost of around $100 to $120 per hour. This bill is set to increase with more specialist treatment.
"We are optimistic about what we are doing.
We have had to sacrifice a lot of things and not live how we would like to live per se in order would like to live per se in order to give our son the best opportunity to have a shot at a normal life, to communicate and socialise with others," said Mr. Purvey.
BASE founder Tricia Crow has three sons with varying degrees of autism. Like many, she initially had no idea why her children Geoffrey, Michael and Richard were showing unusual behavioural problems.
She set up BASE in 2001.
"There was a group of people with autistic children aged three, four and five but no one knew anything about it and no one was trained in it," she said. "We should have been able to go to a specialist on the Island to point us in the right direction, but that was not there."
Four years later the situation has not changed greatly, however knowledge about the disorder amongst parents with autistic children has increased as a result of BASE, the workshops it holds and by members clubbing together to bring visiting specialists to the Island.
There are not enough speech and behavioural therapists on the Island to fulfil the requirements of the 35 children of primary school age diagnosed with autism, and the further 100 or so aged from two to 18.
BASE has brought experts to Bermuda and helped to train many parents so they have hands-on skills and an understanding of how they can assist their autistic children to improve their behaviour and integrate more socially.
Keeping that momentum going is one reason the group has organised its first sponsored walk. If it can attract plenty of willing walkers ? and perhaps a few of those who are getting in some early training for next year's End-to-End event ? it could make all the difference for its future plans to hold a summer camp and train volunteers.
Emma Lopez' son Max has been diagnosed with a developmental delay of unknown cause which puts him behind his peers in terms of acquiring life skills. While Max is not strictly speaking an autism case, he has many of the same speech and learning delays as those with autism.
Mrs Lopez said: "Soon after learning of our son's special needs I searched for support groups on the Island and found BASE.
"Many of BASE's training programs and workshops over the past few years have focused on speech and language development with particular emphasis on a program called 'Verbal Behaviour'.
"From those courses I have learned important information that has been beneficial for enhancing Max's educational programme at school and at home. I credit BASE with introducing me to a program that has helped Max to progress in his speech and language development."
BASE founder Mrs. Crow would like as many walkers as possible to attend the December 11 Unlocking Autism Walk in the Botanical Gardens.
She said: "We'd like to run a summer camp for kids with autism that will provide all the therapies. We'll run the camp for the children and hopefully there will be some Bermudians who will be there and will want to be trained."
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