The process towards diagnosis all began when the pair took the now soon to be four-year-old for his vaccination needle at 18 months.
The young boy was still not speaking, which lead the public health nurse to refer them to a speech-language pathologist at the Burin Peninsula Health Care Centre. After several months with little improvement, it was determined Tristan should see a pediatrician in St. John’s as well as the child management specialist in Burin.
Mrs. Hanrahan recalled that day as the first time autism – a neurological condition that affects brain functions and results in difficulties communicating and interacting socially – was brought up.
“It was kind of like, ‘Wow! No, it can’t be.’ We didn’t think it was anything like that. Then, of course, I came home, got on the computer and started researching.”
The more she researched, the more classic signs – among them handclapping, tippy toeing and lack of eye contact – the couple, who live in Little Bay, Marystown, recognized in their son.
“He didn’t respond to his name. You could say ‘Tristan’ a hundred times and he wouldn’t look at you. He wouldn’t really interact if he was around other children. He didn’t imitate. If you waved ‘bye-bye’, he wouldn’t wave (back).
“There was definitely enough there that we knew.”
In Dec. 2007, a team of health care professionals examined Tristan in St. John’s and a diagnosis was officially confirmed.
“The biggest thing was having to tell our family members because up to that point we were kind of keeping most of it to ourselves. We didn’t want him labeled before we were 100 per cent sure.”
As he approaches his fourth birthday next month, Tristan is still unable to talk and is learning to use the Picture Exchange Communication System (PECS), a visual aid containing a series of images allowing him to point to things he needs or wants.
Mrs. Hanrahan indicated the couple hopes and prays Tristan will be able to speak some day, but if not the system will enable him to communicate with them.
Unfortunately, Tristan’s instruction has been hampered on several occasions due to an inability to find a reliable home therapist.
Dad Derrick acknowledged most people don’t understand what the position involves and disqualify themselves prematurely.
“First when we got our diagnosis back in Dec. 2007, we waited right up until April and we got a university student that came home for the summer. Then we had another person that didn’t last very long.
“Then we finally got another person that lasted six months.”
That person left because she reaggravated an old injury – unrelated to working with Tristan, which Mr. Hanrahan indicated doesn’t require much physicality. It mostly involves a system of treatment known as Applied Behavioural Analysis (ABA), which uses a system of rewards and consequences to teach behaviour.
Mrs. Hanrahan acknowledged there’s a lack of understanding regarding the position, which, ultimately, is vital to Tristan’s development.
“A lot of people ask me, ‘oh, did you find a babysitter yet?’ and that really upsets me because it’s definitely not a babysitter.
“One of us has to be in the house at all times with them.”
Mr. Hanrahan explained some post-secondary or psychology is an asset, but is not a requirement and training is provided. Regular visits from the child management specialist in Burin ensure everything is running smoothly.
“It’s not something a parent can do because he’s with us everyday. Most kids don’t really listen to their parents as well as they would an outside third person when they know that this person is here to do these things with them.”
Mrs. Hanrahan indicated the next year is of utmost importance as Tristan is registered for the KinderStart school orientation program.
“Routines are really important to children with autism. Tristan gets used to seeing one person for a certain amount of time. Then all of a sudden this person is gone, the routine is up sought and his program is put on hold.
“You get frustrated. Everyone knows, pretty well, that Tristan is autistic. So, it`s not something that we’re trying to keep a secret-type thing. I don’t think people got the confidence and really know enough exactly what a home therapist does and they’re probably thinking, ‘Well, I can’t do that.’
“There has to be lots of people around in the area that I think could be able to do the job.”
The search for a home therapist has been just one of the challenges in learning to raise a child with autism on the Burin Peninsula.
Mr. Hanrahan acknowledged a support group for parents in the region would have come in handy when he and his wife were hit with the news.
So, the couple has decided to spread the word and is inviting other parents, grand parents or anyone who has a connection to contact them about participating in a regular meeting – informal to start, but with hopes of growing and expanding as time passes.
“ When we were first going through the process of getting Tristan diagnosed, it would have been nice to speak to other people that had either already had a diagnosis for the fact that when you’re going through all this stuff you really have nobody else to talk to.”
He explained what other parents might see as normal developments in their children can be landmark moments for those with an autistic child. He noted it was a milestone for the couple when Tristan started clapping his hands.
“Nobody else can really understand what you’re going through unless they’re going though it themselves. It’s harder to talk to other people about it that can’t clearly understand it.”
The Hanrahans believe the need for such a support group is present on the Burin Peninsula. According to Health Canada, approximately one in every 150 children in this country is born with autism. The couple said they’ve been told the rates in this a region are even slightly higher – one in every 135 children born.
“Even if parents of older children were involved, or if grandparents of a child wanted to be involved because they would all bring their own story to the table or a little bit of information that you could try that you might not have yet or a service that you’re not aware of that might be there.
“Basically, it’s just to have somebody to talk to and somebody to listen to you – our little group of people that know what everybody’s going through.”
Anyone interested in discussing the support group with the Hanrahans may contact them at (709) 279-0434 or via e-mail at ‘firstname.lastname@example.org’.