For each family who has a child with autism, life’s challenges present differently.
Two West Shore families have revealed there is not a ‘one size fits all’ route when it comes to raising a child with autism, and although there are parallel experiences, circumstances vary greatly for everyone.
Lindsay and Brent Wilson have been fortunate on their journey of finding resources and support for their six-year-old son, Eli, who is non-verbal.
A child with autism must first have a diagnosis before the family can receive financial support from the government, and this can take up to a year to get unless the family chooses to pay out-of-pocket and get a private assessment. Eli was diagnosed around the age of three.
“We were lucky, we knew he would be diagnosed before he was assessed, so we had already prepared and selected a team before he had the assessment done,” said Lindsay, noting they went the private route and hired someone to come and asses Eli, which took about a month. Within a week after the diagnosis, Eli began receiving therapies.
Now that Eli is in school, he has an education assistant with him at all times and receives speech therapy, along with at-home therapies and visits from support workers.
Brittany Standing and her partner, Corey Champagne, have had a more challenging experience finding and connecting to resources. The family moved from Alberta to Langford with their two daughters Brielle and Chloe about four years ago.
“We have not had good luck. It feels like when you have a child with special needs, you’re just a number and you’re left out to drown,” said Standing, who just got Chloe’s autism diagnosis in the past month. “Everything takes a lot of time. It is hard to find a doctor here that will give you the time of day. We are just slowly starting to get her support system built up, but it’s taken almost four years.”
Chloe, 4, is non-verbal and delayed in development, so Standing said she and her partner have had to carry their daughter everywhere. Both families noted there are a variety of other medical conditions that can come along with autism, such as epilepsy, digestive issues, disrupted sleep and so forth, but everyone will be affected differently.
“Chloe is very delayed, so although she is four, she is more like a one-year-old. When she was younger we were brushed off and told nothing was wrong, but she was not progressing,” said Standing. “She was having seizures at night, and when we finally got her referred, they found she is epileptic, but it was all missed. She then got medication and things started improving.”
Standing said she wished the process of getting an autism diagnosis could have happened more quickly, and that supports were more accessible. She is looking forward to when Chloe begins school in September, and can access resources through the school district.
“Now that we have the diagnosis and funding coming, she can receive therapies four times a week, rather than once a week, and will have an EA (educational assistant) in school. Just a lot more support is coming, so that is really exciting for us,” said Standing.
Though the two families have had vastly different experiences with respect to finding support, there are also some similarities in experience. Both families say raising a child with autism has made their family stronger, and they have all become more compassionate, understanding, and loving people because of it.
Standing added that Chloe has been a great teacher for her family, and she wouldn’t want things any other way.
“Chloe is a blessing, she brings so much joy and happiness, and my other daughter is the most amazing big sister,” said Standing. “It has been physically and mentally difficult, but has changed our family for the better overall.”
Lindsay said Eli has a twin sister, Ava, who is neuro-typical, and can understand her brother better than anyone. The family is glad the two siblings have each other to lean on.
“Ava and Eli will often play in the presence of each other, but do their own things. Eli seeks out Ava, he likes to be close to her, and she is always watching where Eli is to make sure he’s OK. Eli gets joy out of interacting with Ava. She cracks him up, she’s funny and goofy as heck, you can see the engagement on his face, and the fun he has when they play,” said Brent Wilson.
Both families also highlighted their child’s deep connection to nature. Standing said Chloe has always been infatuated with trees.
“She will go up and hug every tree as if it were a human, as if she can feel energy from it,” said Standing with a laugh.
“For about a year of her life, I would have to take her outside to feel the trees all throughout the day. We would have to close the blinds, because she would cry until she could be near the trees. When my husband would come home from work, he would take her out to touch the trees again.”
The Wilson family emphasized Eli’s love for playing outside as well. He particularly enjoys going for walks through parks, swimming and going for drives.
“He loves anything in motion, the feeling of wind, or the sound of moving water,” said Lindsay.
“We will take the kids to Goldstream Park or to the beach, and Eli will stand there with his eyes closed listening to the water.”
The families both said a major challenge is not always knowing what their child is trying to communicate, such as when they are sick or hurt. And both of their biggest concerns were for the future of their child, hoping to ensure that they receive enough support throughout their lives.
“We have learned early on in the process that we are playing the long game. It’s a slow, steady journey that requires patience, consistency and perseverance. We want to ensure Eli has all the tools and resources to make consistent progress, and that he can enjoy his experience,” said Brent Wilson.
“Autistic children become adults, so we would also love to see more inclusion overall in the world. We would like to know he has the same opportunities to education and employment as others do. Everyone wants meaning and to contribute to society, it’s just a matter of finding a place where you fit.”
To read more about National Autism Awareness Month, go to goldstreamgazette.com/tag/autism-awareness-month.
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