An SMD Success Story

Navigating the Roads of Rural Services

Parenting holds its share of challenges, but even more so when your child is born with a hearing disability…and you live in a rural area where support services aren't readily available.

Mark and Candace Wozniuk live in the town of Minitonas, Manitoba with their two daughters, Tawny (age 7) and Brooklynn (age 4). Neither Mark nor Candace's families had any sort of history of hearing loss. As a result, they were shocked when they found out their children had been born with a hearing loss…and even more shocked at how difficult it was to get an exact diagnosis.

"We didn't initially find out about Tawny's hearing loss and, due to the fact that she's highly skilled at reading lips, we really had to struggle to prove that she had a hearing loss," recalls Candace. "We had many doctors tell us that she was just spoiled and that she would come around. It wasn't until I finally made an audiologist turn their back and test Tawny that they realized that she was picking up on the body language and the lip movement and she wasn't hearing a thing."

Brooklynn was also difficult to diagnose, but for different reasons. Although they had Brooklynn's hearing tested at the same time as Tawny and found out about her hearing loss, there were other problems. Brooklynn was acting out around the house, hitting people, wrecking things and behaving in unusual ways. Because of her age, her parents couldn't even ask her what was wrong. The stress levels at the Wozniuks were rising and no one was sure what to do.

But perhaps the biggest frustration was that the Wozniuks often felt left out of the decision-making process when it came to their children.

"We didn't get a lot of information," says Candace. We were told, 'Your children have a hearing impairment. We're sending you to Winnipeg.' When the girls got tested there, the doctors said, 'Your children are going to be fitted for hearing aids. We're sending you back to Dauphin.' The lady fitted us, basically gave us the hearing aids and sent us home. And that was kind of the end of the involvement."

Then about two years ago, the Wozniuk family met Diane Maydaniuk..

Diane - who works at the SMD Parkland Office in Dauphin, Manitoba - originally began connecting the Wozniuks with speech and language pathologists through the Parkland Regional Outreach Therapy Program. But the relationship quickly grew as Diane became more involved in helping the family connect with different services.

"She got us set up to see an occupational therapist, physiotherapist and speech therapist all out of Winnipeg, out of the Society for Manitobans with Disabilities Communications Centre for Children," says Candace. "We went down there and spent a week having the girls evaluated. And basically, that's where our lives took a turnaround."

SMD helped determine why the girls had a hearing loss and diagnose their specific conditions. In addition, it was determined that Brooklynn was unable to speak and had Sensory Integration Disorder; a disorder causing children to react differently to touch and movement. This fact combined with the frustration of not being able to communicate was the root of the behaviour problems.

Working together with SMD, things began to change for the Wozniuks. The whole family learned sign language, enabling everyone to communicate. When her right ear went completely deaf, SMD petitioned the government to get Tawny a much needed new hearing aid. A Preschool Coordinator from SMD's Brandon office comes to the Wozniuks' home once a month to help Brooklynn with her sensory issues, offering ideas and advice that the Wozniuks can use on a daily basis.

The family is sharing what they're learning with the community as well. When Tawny started school, the Wozniuks worked closely with the staff, working on sign language and remembering to face the class so that tawny could lip-read. Candace - who is also currently taking Business Administration - also manages to find time to work with SMD to organize American Sign Language courses for the entire Minitonas community. As if that wasn't enough, she actively works with Tawny's class to teach sign language.

"Right now I'm in the process of doing two Christmas songs," says Candace. "We do one for my daughter's Christmas Concert in her school, plus we've been invited to the church Christmas Eve to do a song."

Candace says it's vital for parents to ask questions, push for answers and make their voices heard in making the decisions that affect their children. "If you don't advocate for your children, no one will," she says.

In working with SMD, the Wozniuks have found an ally in their advocacy; people who listen to them and keep them both educated and involved every step of the way.

"Diane was the first person that ever said to us, 'Nobody knows your kids better than you know your kids," says Candace. "My husband and I kind of looked at each other and went, 'Finally!'"

"Diane has been there all the way through and backed us on everything that we've ever tried to do or wanted to do with the girls. She's done what she can in her professional capacity to back us.

"I chose Diane to be our case manager because she's right on top of things. She knows what's going on and she's not afraid to dig. If you ask her a question and she hasn't got the answer, she'll find out who has. I just don't know how to explain her."

"Diane has always been there. I can even just pick the phone up and just phone and talk to her. Other than in her professional position she's been a shoulder to cry on at the same time. She basically knows everything that we've gone through in the last two years."

There are still challenges ahead. Babysitters who know sign language are still in short supply in Minitonas. Brooklynn will be starting school in September '05, and because she has no speech abilities and sensory issues, staff must learn how to work with her in a different way that they did with Tawny. Still, the Wozniuks continue to be optimistic, knowing that they aren't going to be facing those challenges alone. Diane - and SMD - will be there to help in any way they can.