St. Albert Gazette Spotlights Giving Every Child a Voice Project

Program provides assistance for children
St. Albert Gazette, Saturday, Apr 08 – By: Dayla Lahring

Toby Morris, 5, pushes a command on an iPad app, called TouchChat with WordPower. Morris, who has spina bifida and is non-verbal, uses the device to communicate with the world around him. DAYLA LAHRING/ St. Albert Gazette

An iPad app displays various images of animals, colours and days of the week. The device is fastened to a stand attached to the front of the wheelchair, an arm’s length away from five-year-old Toby Morris. Extending his arm, he pushes a picture and a female’s voice says “orange.” Smiling widely, he communicates his mother’s favourite colour.

“This is his voice,” says Toby’s mother, Andrea Morris, as she sits on the floor next to him. “It’s not just a device, it’s not just a play-thing. I feel like when he doesn’t have it, my heart breaks because it’s almost like he’s being gagged. He’s not able to say something if he wanted to.”

The app and iPad were provided to Toby through a program called Getting Ready for Inclusion Today (GRIT), a non-profit based out of Edmonton.

Through GRIT, Toby has also been provided a team of experts, ranging from speech pathologists to nurses, who work directly with him on a daily basis.

“He’s benefitted so much from it, his aide is really amazing,” she says.

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Digital Storytelling Captures a Journey of Inclusion and Healing

Lorna Lillo Jones and her son Kyle

This year The GRIT Program is celebrating its 35 th anniversary of supporting families and their children with developmental disabilities. As part of the anniversary, GRIT hosted a powerful workshop this past fall to help parents create their own digital story.

For many parents with children with special needs, they are often asked to “tell their story.” Sometimes it’s a reporter doing a story about the child’s medical condition. Maybe the family is asked to speak at a fundraising event. Or sometimes it’s a question from another parent with a child with similar needs. If the parent agrees to tell their story, they soon realize how difficult it is to tell their story well. Where do they start? What do they include or leave out? And afterwards, sometimes the resulting story doesn’t quite do justice to the enormity of the story.

GRIT Alumni, Lorna Lillo Jones, was invited not to tell her story but to attend a story telling retreat that would help her create and write her own story. The retreat was hosted by the GRIT Program, an Edmonton-based non-profit agency that supports pre-school-aged children and their families. GRIT had supported Lorna’s son Kyle many years ago when he was a pre-schooler.

She said yes almost immediately. She had created a blog a few years earlier that encouraged parents to never give up advocating for their children. It was a way to mark the 25 th anniversary of her son’s accident that changed everything. She thought the story telling workshop would be similar, just a different medium.

The workshop, facilitated by Karen Matthews and Judy Sillito of www.weaseltale.com, involved seven other parents and took place over three evenings and a weekend. The workshop was structured to enable each parent to reflect, share, write, edit, produce and screen a 3-5 minute video. There was barely a dry eye in the room when the videos were first shown at GRIT’s annual general meeting in November, launching their 35 th anniversary celebrations.

Lorna’s video story began with the sound of a child playing in water.

“My world turned black that day,” she said in the voice over.

When her son Kyle was just three years old, he was found unconscious at the bottom of a swimming pool ten minutes after arriving at a church gathering. He suffered serious brain damage, was put into a medically-induced coma, and spent the next seven months in Edmonton’s Royal Alexandra Hospital and then the Glenrose Rehabilitation Hospital.

Lorna’s video story entitled More Than a Five (www.youtube.com/watch?v=sfyagNboPZY), is a compact and emotional four-and-a-half-minute collection of pictures, music and spoken words expressing her feelings and frustrations as Kyle worked his way through the sometimes-bewildering healthcare system. In the video, she recalls asking the doctors what Kyle’s best and worst outcome could be. They said: “The worst, he will die. The best, is he’ll recover. Mostly likely – on a scale of one to ten –he will be less than five.”

While Kyle has progressed much further than those dark days following the pool accident, the years since have been anything but easy. After coming home from hospital, Kyle nearly died several times after catching pneumonia. GRIT’s educational team of occupational therapists, speech language therapists, educators and others provided in-home and sometimes in-hospital care for Kyle when he was four and five years old. Living in a community outside of Edmonton, Lorna found it hard to find a public elementary school willing to accept and support Kyle in school.

“We don’t take children like that,” a school official told Lorna.

But GRIT’s expertise at supporting families to advocate for their children’s meaningful participation in their community, was just the kind of support the family needed. Lorna has never forgotten how much GRIT contributed to Kyle’s recovery and accomplishments.

“They were very good at judging what he was able to do,” Lorna remembered. “GRIT just became part of my family.”

“At first we really felt quite alone… until we found GRIT and we knew we had found someone on our side. It’s important to surround yourself with people who believe your child has a place in society.” Today, Kyle is 31 years old, has completed high school and a Hospitality Management diploma program at NAIT, lives with a roommate in his own downtown apartment, takes karate twice a week and holds down a part-time restaurant job. He receives 24 hour a day support from Neighbourhood Bridges when needed. While he is unable to speak, he hears and understands everything, smiles, jokes and communicates through sign language and recently a computer voice generating device. “We just wanted him to be as included in life as much as possible,” she said.

Written by: Terry Jorden, 780-934-1152

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ASaP Expands Throughout Alberta

ASAP_expandingFrom the Resource Magazine For Families with Special Needs 2016:

GRIT Edmonton Goes Provincial
ASaP Continuum Project (Access, Supports and Participation)

The GRIT Program in Edmonton is growing! GRIT is a well-known early childhood education program for children with disabilities in Edmonton accessing Program Unit Funding (PUF). Today, we are excited to share about our exciting new work to support inclusion in child care and more!

Alberta Human Services has recently enhanced funding to expand our ASaP Continuum Project in several regions of Alberta. ASaP uses the evidence-based Teaching Pyramid Model framework from the Center on the Social and Emotional Foundations for Early Learning (http://csfel.vanderbilt.edu/) to increase the awareness of social and emotional development of young children.

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