Challenges and rewards
P.E.I. families say their children with autism show them ‘the beauty of the world’
MISCOUCHE, P.E.I. – Kerry Richard wants people to know that having children with autism isn't just about challenges - there are plenty of joys as well.
Kerry and her husband, Tyler Richard, from Miscouche, P.E.I., are the proud parents of six-year-old Michael, four-year-old Nicholas, and daughter Kyomi, one. Michael and Nicholas both have autism.
Kerry said she has not encountered many challenges with respect to her children having autism.
“Behaviours have come up, but my children have always been easily redirected," she said.
Their biggest issue has been Michael's running.
“My oldest son, Michael, has a hard time understanding danger," she explains.
"When he sees a flag, for instance, he runs to show me the flag, but he doesn't understand the road that comes before the flag is dangerous to run across. He is improving with time and patience though.”
ACCESSING SUPPORTS
There are supports available in P.E.I. - therapy from speech pathologists, occupational therapists, as well as
IBI (Intensive Behavioural Interventions) therapy - and Kerry notes that the Autism Society of PEI “is an amazing support for families and for creating a norm in our communities for children on the Autism spectrum.”
But wait times for therapies are frustrating, she said.
"Some therapies are a year wait times (or more now due to COVID). To see these wait times drop would be an amazing thing for other families that are still waiting for these therapies," she said.
Cara and Kevin MacCormack live in Charlottetown with their two sons, Luke and Landon. Nine-year-old Luke has autism.
For Cara, some of the challenges they face in having a child with autism are finding adequate support within the school system.
"Getting Luke an educational assistant (EA) at school was a fight as most children fall through the cracks," said Cara.
And, she notes, that EA time is more focused on behaviour opposed to learning needs.
“I have also asked a few times to have Luke held back in school as he is much further behind than kids his age in the educational sense. It’s not something that schools do anymore," she said.
Luke struggles with making and maintaining friendships.
“Loud noises and flashing lights are a big trigger as well," she adds.
SEEING THE BEAUTY OF THE WORLD
For Kerry and her family, the joy of their children far outweighs any challenges they experience.
“The joys, oh how do I begin?” she said. “I hadn't realized the beauty of the world I missed every day until my kids came into my life.”
This rings especially true for Kerry regarding her children’s response to the natural world around them.
“The trees are an everyday sight to see, but to my kids, they are so much more. One day, we laid in the shade on a warm day, my son pointed up and said, 'Leaf, Mommy.' I said, 'That's right, trees have leaves.' Then my boys began rhyming off the colours in the leaves," she recalls.
Each time they named a colour their voices got louder with excitement, she said, until they were shouting the tree had a rainbow.
"They found that joy in something so simple that we see all the time, yet we forget the joy we feel when we lay down and just enjoy seeing it," Kerry said.
"That's just one example of many, but it is one I often love to think back to.”
It’s not all challenges, adds Cara, who said that watching Luke overcome his struggles is so refreshing.
“He’s so kind and warmhearted too. Everyone who meets him loves his heart and smile," she said.
Cara feels that the most common misconception there is about autism is “definitely that autism looks a certain way.”
Much to her frustration, she and her husband Kevin are often told “he (Luke) doesn’t look autistic.”
THE WORD ‘ABILITY’
With respect to the most common misconception for children with autism, Kerry believes it all comes down to the word 'ability.' She points to her younger son, who was compared to his older brother and treated the same way, and the limitations many believed her kids would experience.
“I have cried many nights because my children were shown limitations. I was told one of my kids wouldn't talk, that he would forever use PECS (picture exchange communication system)," she said.
Kerry said the PECS system is a tremendous system for nonverbal children/people.
“I'm not trying to say it isn't an amazing system, but what bothered me was my child was limited to that being an only option. Who was to say he wouldn't talk? If I set that limitation on his ability, I'm not giving him the best chance to learn to talk," she said.
Advocating for children becomes a regular occurrence for parents.
“People hear 'autism' and they think that child has limitations on their abilities. But these children are only limited to what we limit them to," Kerry said.
"If we don't set those limitations on their abilities, these children can soar and learn whenever they please and that is what they deserve.”
Kerry said she has shown her kids that the sky is their limit.
“When they reach the top, they have reached the limit. They love to learn and explore, and my children are both talking and reading and so much more," she said.
"Was it my teaching them of the sky being their limit that accomplished this? I'm not sure. But showing them they had a limitation on their ability wouldn't have helped them in the least bit either.”