Cody Mutch, 11, leans back in a rocking chair in his bedroom as he listens to some international music.
He becomes irritated by the buttoned-up shirt he’s wearing and starts pulling at it as he utters sounds of frustration.
“You don’t like that shirt, Cody? Hold on. I’ll get you another one,” mom Corinne Martens says in a quiet, calm tone.
She reaches into the dresser in Cody’s room and pulls out a T-shirt that is softer to the touch.
There is a bit of a struggle as Corinne helps Cody change out of the shirt, but she remains unflustered. Situation resolved, Cody focuses back on his music.
There was a time when Corinne might have lost her patience during chaotic moments, but she has experienced a “shift in perspective” that she is sharing with others through a website, codysstoryforchange.com.
Corinne hopes to inspire more acceptance and understanding of people with disabilities, particularly in countries – such as Russia and Romania – where institutionalization is common.
Cody is blind and autistic. He is unable to speak and communicates his needs through sounds and movement.
Although there are daily challenges that Corinne could never have imagined, she feels that raising Cody is a privilege.
“He teaches me so much about what it is like to be courageous, resilient, patient … to be adaptable … I learn so much from him,” she said.
Abbotsford News readers might remember Cody from his early years. The News first wrote about him in 2004, when he was the local New Year’s baby, born to Corinne and her then-husband Jonny.
The celebration was tinged with heartbreak when the couple learned that Cody had been born with extremely underdeveloped eyes – a rare condition known as microphthalmia – and would be blind for life.
As he grew, the couple shared their story about adapting to life with a child who had unique needs. How would Cody learn to crawl or walk when he didn’t have visual cues to motivate him?
How would he learn to sleep through the night if all he experienced was darkness and had no concept of daytime?
How could they get him to stop taking out his prosthetic eyes and throwing them on the floor?
Further challenges arose when Cody was diagnosed with autism at age five, after he gradually lost his ability to speak and was exhibiting behaviours such as repetitive movement and impaired social interaction.
But Corinne and Jonny – who divorced in 2010 and also have a 14-year-old daughter, Jessica – have been determined to give Cody as many experiences and opportunities as possible, along with the support of her new partner, Dan, and Jonny’s wife, Rachel.
A note on Cody’s bedroom door states, “Don’t do for me. Do with me.”
He attends North Poplar elementary, where he is tasked with taking the class attendance record to the office on his own. His mobility is aided with the use of a white cane – Corinne calls it his “independence stick” – for which he has had special training.
Cody learns to get around new environments by repeatedly walking around an area until it is “mapped” in his head before he adds to the route. He has done this in new homes his parents have moved into and when he started school.
Walls, furniture, counters and other items serve as “landmarks” for him to follow. This is demonstrated when Corinne asks Cody if he wants to go into the backyard.
He is gently guided by Corinne, but mostly finds his way on his own, running his hands along the railing of the patio stairs, which lead onto a trail of paving stones he can feel on his bare feet. The stones lead to a swing set where Cody likes to turn a “steering wheel” attached to the wood frame.
From there, he walks back along the stones to the patio and runs his hands along its length until he comes to a trampoline at the end. Stairs lead up, and a cable extended across provides Cody with a support to grip as he gently bounces.
Cody is also involved in recreational activities. He particularly enjoys swimming and horseback riding – which he first began privately and now does through the Valley Therapeutic Equestrian Association in Langley.
He also recently began playing with Challenger Baseball, a newly formed division of the Abbotsford Angels Hardball Association. The team is for kids with disabilities who are paired with buddies to help them swing the bat and run the bases.
Corinne prepared Cody for the new experience by reading books about baseball with him and having him feel the pieces of equipment, but initially he was overwhelmed with all the noise and the new environment.
Corinne took him back to the park when nobody was there. They sat in the dugout and she had Cody run his hands along the chain-link fence, and run the bases. His next game with the team went much more smoothly, and Corinne anticipates continued improvement.
Over the years, Corinne has learned to better adapt to the challenges Cody faces and to not feel burdened as she sometimes did. She sees Cody – and other people with similar challenges – as brave and strong.
“Now, I can honestly say it’s a privilege to be his mom, and I would never say it’s a self-sacrifice or a burden … I hear people (who have children with challenges) say it’s a life of self-sacrifice and that just does not sit well with me.”
Corinne, who recently completed her diploma in library and information technology, currently works part-time at a local public library and as a bookkeeper, and is seeking a more permanent library position.
She receives some government respite funding to pay for Cody’s care when needed – such as when she is working or in school – as well as speech and occupational therapy costs related to his autism diagnosis, and a child disability credit due to his blindness.
Corinne hopes her website reaches out to others, and she wants to become an advocate for change in countries where government funding and community support is lacking, resulting in many parents feeling as if institutionalization is their only choice.
“If the life of just one child living in an institution is improved because of me sharing Cody’s story, I will consider this endeavour a great success.
“Maybe one mother will be inspired to fight for their child – to go to the institution and carry their child back home.”
SUPPORT FOR FAMILIES
More information about autism and support for families is available at the following resources:
* Fraser Valley Autism Society – fraservalleyautism.com
* Autism Society of B.C. – autismbc.ca
* Autism Support Network – autismsupportbc.ca
* Autism Funding in B.C. – asdfunding.com