Strangers in stores have tried to shame Renee Hardy's son.
They make comments or glare at her and her son, Nathan, because he doesn't behave like they think he should. Once an elderly man came up to them and started mimicking Nathan, Hardy said.
Nathan's socially unaccepted behavior is caused by autism spectrum disorder, but the people who watch him do not know this. He doesn't look like a child who has autism.
She knows where those strangers are coming from. It took time for her to accept her son's diagnosis.
"I fought the diagnosis," she said. "Everybody went into denial. I always thought autism was worse - no hugs, no touching; it seemed more wild."
Hardy found a group of families who understand what her family goes through on a daily basis. The North Dakota Autism Connection unites families across North Dakota whose children have an autism diagnosis. The 2-year-old organization will host its second annual Autism Awareness Walk on Saturday.
The walk is the organization's biggest fundraiser. Last year it raised $18,000. The money stays in North Dakota to help families afford treatments and therapies not covered by insurance and send parents to autism conferences.
Hardy's situation is at once unique and common for families who have children diagnosed with autism. No two children experience autism the same way. Even Hardy's own three children, all of whom have or show signs of autism, express it differently. Nathan, 6, has sensory issues, while Katie, 4, has seizures and Ryan, 2, is nonverbal.
Nathan's diagnosis changed Hardy's hopes for his future. It was like, "grieving all the dreams you have as a parent," she said. "You have to let a few go so that you can get to your real child. Everything just needs to be changed, not given up. You have to get there in a different way."
It sometimes means picking battles. Nathan is particular about texture and the way things feel, from the food he eats to the clothes he wears. He will only eat five foods: peanut butter, french fries, potato chips, chocolate pudding and chocolate chip muffins.
He's also particular about the food's packaging or where it comes from. For example, he only likes french fries from McDonald's, she said.
"It's not technically the food but the containers," she said.
She keeps McDonald's french fry containers on hand to serve store-bought fries at home. She also keeps a standing order with Sweetheart Bakery for chocolate chip muffins.
Every two weeks she leaves the bakery carrying a case of chocolate chip muffins. She wonders what people must think. Sometimes, people ask her if it's for a party. There's no party. Just breakfast for a 6-year-old boy who has particular tastes.
"You learn how to do things like that to make life easier," she said.
Now, she knows what some people might be asking: What mother gives her child muffins - with chocolate chips, no less - for breakfast? She's concerned about Nathan's health. They have it monitored by a doctor, who has blood drawn for analysis. He also drinks a nutritional supplement, which is something they pushed on him to drink. Luckily, he likes its cherry flavor.
Autism changed the Hardy family's dynamic. They can't hire a baby sitter, and play dates are rare. Even trips to the park are an ordeal because Nathan doesn't like the feel of grass or sand.
It takes a couple of hours to get her children ready in the morning, even after she's laid out clothes for them the night before.
Forget spending time alone with her husband, Will. They get 10 minutes every night to catchup with each other. Her husband works two jobs and attends school full-time. She abandoned a future in medical transcription to care full-time for her children.
"I always have to be an on-call mom," she said.
Her children attend therapy at The Enrichment Center on Main Avenue during the week. Each child spends four hours a day there. Most of the time is meant to help the children learn to socialize. Her daughter attends a half-day program at Bismarck Early Childhood Education Program and Nathan will spend part of summer vacation in Camp Edventure with the Bismarck School District.
Nathan will be in first grade next year at Northridge Elementary School. He did well in kindergarten without the need of an aide. He might need an aide in the future to help him stay focused. He tends to lose track of what he's doing, especially during transitionary periods, Hardy said.
The North Dakota Autism Connection gives Hardy an outlet for handling issues with her children. She's made many friends through the group, and she's become passionate about raising awareness about autism, she said. The group meets every third Thursday of the month at River of Hope Church.
The walk is at Horizon Middle School on Saturday. It is a free-will donation. Registration begins at 8 a.m. and the walk starts at 9 a.m. For more information, visit www.ndautismconnection.org or call 425-6151.
(Reach reporter Sara Kincaid at 250-8251 or sara.kincaid@bismarcktribune.com.)
Posted in Local on Sunday, June 14, 2009 7:00 pm Updated: 12:20 pm.
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