Troy Media – By Judy Monchuk
Frank Rosica’s mother was pulled aside on his second day of preschool with the kind of teacher’s comment that sends a chill through every parent: “We have a problem.”
Little Frankie wasn’t paying attention, but in a way that was different from other children. The teacher thought that the actions she saw in the precocious four-year-old fit the symptoms of autism.
“I started bawling,” says Sandra Rosica of that autumn day in 1997. She went looking for information and found almost nothing. Her favourite parenting book had one paragraph on autism. The Internet, a relatively new source for data then, was of little use.
The developmental disabilities that fall into the category called autism spectrum disorders all affect how the brain handles information.
About one in 165 Canadian children has autism conditions that affect how he or she communicates with others. Some don’t speak. Others make blunt statements that are wildly inappropriate. Many fail to make eye contact, and some don’t like to be touched.
Sandra’s family doctor referred her to a pediatrician who quickly had Frank booked in to meet with an assessment team of specialists at the Calgary Children’s Hospital. Every day for a week, the little boy spent hours with a clinical psychologist, a speech therapist, an occupational therapist and a physiotherapist. By the spring of 1998, he was diagnosed with the type of autism called pervasive developmental disorder–not otherwise specified, or PDD–NOS (see page 16).
While far more is known today about autism than when it was first labeled in the 1940s, there are still more questions than answers. Families with an autistic child face a confusing, emotional and expensive road.
Today Sandra and Sergio Rosica are the parents of two high-functioning autistic teenagers —Frank, 16, and his 13-year-old brother, Robert. While life these days is relatively settled for the family, it hasn’t always been that way.
When Frank was diagnosed, autism was believed to affect one in 100,000 boys.
Autism diagnosis feared
The Rosicas immediately worried that Robert could also have autism too. Nurses teased the couple that they had better chances of winning the lottery. Within a year, the odds were revised to about one in 1,000 — and have grown even greater since. Sandra’s third pregnancy ended in miscarriage, but doctors told her that if she had given birth to a third son, his chances of being autistic would have been one in three.
Robert’s autism proved to be very different from Frank’s. He liked to roughhouse and cuddle, but there was lot of frustration within the small child. Where Frank was very vocal in English and Italian, Robert spoke only a handful of words. Then one day, he stopped speaking and started screaming.
Both boys liked order and detail. Pillows on their beds needed to be arranged in a certain way. Toilet paper could only go over. Rows of Hot Wheels cars were lined up in specific patterns: Frank’s cars would all be placed at the same angle facing the same direction; Robert’s cars would also face one direction, but would include groupings by colour. He would line up dozens of dinosaurs at a time and could immediately tell if one was missing.
Searching for a diagnosis
Although Robert could not be officially diagnosed with autism until he was four years old, he was only three in late 1999 when he began the same battery of tests and assessments that his brother had taken. This time, though, both boys also went to see a geneticist. They went through blood tests and CAT scans to see if there was some other information that could help a medical diagnosis. Doctors found nothing except that both had brilliant blue eyes, an oddity since Sandra’s eyes are brown and Sergio’s are green.
At age four, both boys were extremely low functioning when they were first tested for comprehension. Frank was at one percentile for his listening and communication abilities, meaning 99 per cent of other children were having an easier time with comprehension. Robert’s test scores were in the two percentile range.
The Rosicas soon had boxes filled with test diagnoses, interviews and prognoses. Both boys were placed in intensive preschool programs designed for autism spectrum disorders. Robert had child development specialists come to the house three days a week. But the search for anything that might switch on an inner light had just begun.
Naturopathic remedies tested
Sandra and Sergio tried naturopathic remedies, special vitamins, new soaps and new detergents. There was a steady stream of new diets that cut out dairy products and anything with red dye. A gluten-free regimen was particularly unpopular in the household and triggered months of dinner battles. Nothing helped.
“Oh, the money we spent,” says Sandra. “We did everything but swim with the dolphins.”
Without many guideposts from the medical community, looking for answers can be a quest in a black hole. In 2000, the Rosicas tried “auditory aerobics” — $5,000 for two weeks of intense, twice-daily sessions using sound waves that try to stimulate the brain.
It sparked a breakthrough with Robert. Within weeks, he had gone from screaming and being unable to communicate to speaking clearly enough to be understood, a boon when he returned to preschool and celebrated his 4th birthday. But the therapy made no impact on Frank. A second session the following summer also produced no improvements.
“I don’t regret any of it,” says Sergio, who works for Calgary Transit, the city’s bus/light rail transit company. “In the back of your mind you always think, ‘This one will do it.’ You don’t know what’s going to help them. How can you not try?”
Skills to live independent lives
Like all parents, the Rosicas wanted to ensure that their boys had the tools to live independent adult lives. And that meant attending mainstream school. A bubbly woman with a ready smile, Sandra developed a tough skin battling for Frank and Robert. She fought and cajoled to get classroom aides who could provide structure for her sons in Calgary’s Catholic school system.
Yet the move wasn’t smooth. For years, the Rosicas attended school events involving all the students while one or both of their sons were off to the side, not following anything. “It was almost as if they’d dissolve into the background,” says Sandra. “They didn’t know how to play as part of the group.” As Sandra’s eyes well up with tears at the memory, Sergio reaches over and gently takes his wife’s hand.
Raising one child with a learning disability is hard on any relationship. Two makes it even more stressful, and many couples see their marriage dissolve under such strain. The Rosicas hit their rough patches, too, at one point alternating between fights and stony silence. Sandra wrote her husband a letter saying that if he didn’t want to cope with the struggle, she wouldn’t hold him to it. He wrote back that he wanted to be on board and be a team.
Yet Team Rosica’s challenges continue. Since 2005, Sandra has faced multiple sclerosis, a neurological condition that attacks the central nervous system and often leaves its victims disabled. The disease is in remission, kept in check by daily medical injections, but instances of tingling in her arm are a stark reminder that she is facing too much pressure.
That pressure has built up through the years. When Sandra visited her sons’ classmates to explain autism and the actions that might make others uncomfortable, she was often peppered with questions that would open up a whole new realm of pain. Had she done something during her pregnancy to cause autism? Did she drink? Had she fallen? Had the baby fallen? And why would God do this?
“The kids would end up feeling sorry for me,” she says softly.
The journey has often been lonely. A cause for autism has yet to be discovered. In the 1940s, the medical community blamed it on bad parenting: “refrigerator mothers” whose uncaring style forced babies to retreat into themselves. Later, it was believed that childhood vaccines played a role, or the choice of food given to children. All of these suggestions have been debunked completely or questioned.
Music teacher Michelle Goyer marvels over the changes in Frank from the time she met him at the beginning of Grade 4 to the end of Grade 9. In his later years at St. Gregory school, Frank made great strides. “In grade 4, kids tolerated him. By the time he was in grade 9, it was, ‘This is Frankie, this is who he is, and we like who he is.’“
Frank plays first trumpet
Frank became “a presence” at the school. He played first trumpet with the concert band and did anything that needed to be done for whatever team or sport was playing on any day. His efforts were recognized with the Spirit Award, which is presented to a student who shows incredible caring and has realized his potential.
“It’s pretty inspiring to see a student who has autism rise above the ranks and succeed,” said Goyer, who presented Frank with the accolade. “Those kids gave him a standing ovation when he got that award. They saw the changes, too.”
Robert, now in Grade 8, has also made great strides. An honour student with a social personality, he has overcome outbursts and most of his repetitiveness issues. He interacts with his classmates and can make eye contact.
As the boys move through higher grades, aide hours have been cut back. They are down from as many as 30 hours a week in the early elementary years to 15 hours a week now for Robert and none for Frank, who is in high school. Frank’s marks are approaching the honour roll. He is on student council and plays trumpet in the school’s jazz ensemble and big band. He recently joined Junior Achievement, and for the first time, his parents didn’t mention his autism. While Frank can still be socially awkward and interrupt conversations, he is quick to apologize if his actions are pointed out.
A good future
The mountain of effort that the Rosicas have made to help their boys has paid off. When the Rosicasy look into the future, they see that Frank and Robert have a chance at regular lives — to live on their own, to have careers and families. Both boys are focused on finishing school and say they plan to go to university.
“When Frank was little, doctors said there wasn’t much hope,” said Sandra. “The best part is seeing the gains and knowing they have a future.”
I was fighting all these years for a diploma. I know now they will do something.”
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