"Adele has become very social and enjoys making friends."

Adele’s “Yes, I can do it!” attitude!

"Adele has become very social and enjoys making friends."

Words by Adele’s mother, Minna

My heart was filled with love—and worries! Realizing that my three-month-old daughter Adele was having difficulty holding her head up and barely making use of her right hand was truly frightening.

Today, thanks to March of Dimes Canada’s Conductive Education® Program, at age five, Adele is enjoying her first year in a regular Junior Kindergarten class in a public school. Working hard in this program has allowed Adele to develop the ability to navigate the playground safely, master uneven surfaces, run and jump. She has become strong and has even conquered going up and down the stairs. This is a tremendous milestone for a child with challenges like Adele’s.

My daughter was born and diagnosed in London, UK. The medical findings were complex, but the primary challenge Adele faces is called hemiparesis syndrome. As a baby she needed lots of support to learn to use her right hand and how to crawl. From her first step to walking independently, it took a full year. She works on balance issues to this day. What comes easily for most children takes a great deal of time and concentrated effort for Adele.

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Adele and mother, Minna

When our family was preparing to move to Canada I was concerned about finding proper resources for Adele. We asked the organization we were working with in the UK for guidance and were overjoyed to find out that March of Dimes Canada was there for us!

Adele has been thriving in the Conductive Education® Program. The comprehensive curriculum seems almost tailor made for each participant. My heart explodes with joy as Adele gains more and more independence through her lessons including self-care skills like taking off and putting on her own clothes.  Her academic achievements now include learning the alphabet, recognizing short syllables and words and even spelling her own name.

March of Dimes Canada is helping her gain confidence and bloom in so many ways.  Adele has become very social and enjoys making friends because learning is done in a safe and nurturing environment among her peers and friends. For Adele, the program does not feel like therapy or arduous work because the wonderful teachers make it so enjoyable for her. The conductors do such a wonderful job of working with all the children to ensure they reach their full potential.

Adele has become fearless in her “Yes, I can do it!” attitude.

Thank you for letting me share my story with you about Adele and if you have the opportunity, please support March of Dimes Canada.

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If you’d like to help other children like Adele receive the support and resources they need to reach their full potential, please visit: www.marchofdimes.ca/DoubleMyGift

Volunteer Spotlight: Joan Winter

Volunteer Spotlight: January 2018

Volunteer Spotlight: Joan Winter

Volunteers are so important to March of Dimes Canada and we are so appreciative and thankful for their continued support and work they do for the organization. It’s true – we really cannot do what we do without them!

We thought it would be a fun way to get to know some of our volunteers by spotlighting 12 this year; one a month and with a few fun questions. Check out Joan, our January Spotlight!

January Volunteer Spotlight

Name: Joan Winter

Volunteer Position:  Chairperson and Peers Fostering Hope Volunteer

How long have you been a MODC volunteer?  7 years

What is your favorite part about volunteering with MODC?  Being able to express that there is always hope and that people need to be determined towards their recovery, which will be rewarded.

What are 3 adjectives use would use to describe yourself?  Determined, dedicated and challenged.

What is your favorite hobby?  Grandchildren is number 1, Reading, and Toast Masters.

What is your favorite TV show?  The Young and the Restless and Big Bang Theory

Erica M. nominated Joan for a volunteer spotlight. Here is why she nominated her:

We have the pleasure of working with wonderful people who donate their time to this organization every day. I wanted to highlight Joan Winter as she is determined to beat the odds. She is her own advocate and works hard towards her recovery every single day. She doesn’t let disability become a barrier. She advocates for Tai-Chi and Toast Masters; two community programs that were instrumental in her recovery. These programs have given her both focus and balance. She doesn’t let stroke define her. She would say “that being the Chairperson for the Oshawa Stroke Support Group has made her stronger and has given her direction” she would also say that “if you think you can or can’t, you are right”.

In addition to being the Chairperson for the Oshawa Stroke Support group she is an active Peers Fostering Hope Volunteer, spending her free time giving hope to people who have newly experienced a stroke. Lastly, she also volunteers with the Living with Stroke program running it twice a year. She is truly remarkable and unstoppable! We want to thank Joan Winter for her time and positive energy towards helping other stroke survivors and caregivers realize that there is life after stroke.

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If you’d like to learn more about March of Dimes Canada’s volunteering opportunities, please visit this landing page from their site: http://bit.ly/MODCVol

Branden - The Impact of L.I.F.E. for young adults with disabilities

The Impact of L.I.F.E. – Branden

Branden - The Impact of L.I.F.E. for young adults with disabilities

When Branden joined the Learning Independence for Future Empowerment (L.I.F.E.) Mississauga Program, he wanted to learn how to take the MiWay Transit buses independently. Although he was comfortable using TransHelp buses and booking his rides by himself, he desired a method of transportation that did not require a booking process so that he can be more spontaneous and flexible in his outings. His goal was to take the MiWay Transit buses to get to the program instead of using TransHelp. He also wanted to expand his social circle and be more familiar with various places in the community.

L.I.F.E. Program Instructors determined that Branden could work on this goal by participating in the Transit Training component of the L.I.F.E. Program since he wanted to familiarize himself with the public transit system and learn how to plan trips using Google Maps. It was also determined that he would be a good candidate for social outings days as it would give him an opportunity to explore the community by attending various events with the program and spending time with other participants in social settings.

Branden Taking Miway - LIFE M
Branden taking a MiWay Transit bus

During Transit Training, Branden was the first to search directions to the destinations. His attendance was excellent as well. He attended Transit Training for one session and is now comfortable taking MiWay Transit buses independently. He also learned many new routes to his house from the program, as well as directions to various recreational sites in his community. Additionally, he reported having an easier time running errands and going out with friends ever since using the MiWay buses. Branden has been very comfortable using conventional transit to the point that he was able to use the Brampton Züm buses to attend an event on his own!

I learned how to take the bus by myself. I met a new friend Siu Fan…He is my new bestie. I am excited to look for and get a job.

– Branden

Branden reported he has expanded his social circle as he met new friends at the program. He shared that he goes out with those friends outside of program hours especially on the weekends, visiting shopping malls like Square One and watching movies together at the theatre or at one of their houses.

Branden at Sqaure One - LIFE M
Branden at Square One shopping mall in Mississauga

Overall, Branden has increased his community engagement by learning to navigate the public transit system, which allows him to explore his community, and he has met new friends at the program. Branden has also been selected as a candidate for the March of Dimes pre-employment program (PEP), and he will begin attending it in November. There he will begin to work on another area of independence.

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Our goal for Giving Tuesday this year is to raise funds to expand our L.I.F.E. Pilot Program in Calgary so that it runs longer than 2 weeks. It’s the first step towards our overarching goal of bringing the L.I.F.E. Program to empower other young adults with disabilities in other communities across the country! We’ve teamed up with Eric Howk from the band, Portugal. The Man, and Savaria to spread the word. Savaria will also be matching every donation dollar for dollar until Giving Tuesday on November 28. This means your donation will be worth twice as much! Please see our crowdfunding pages below:

If you’d like to donate in CAD ($), please visit: http://bit.ly/IGGLIFE

For our international donors, please visit: http://bit.ly/MODCLIFE17

Speechless, "L.I.F.E. Toronto's Thoughts on the Show!"

Speechless // L.I.F.E. Toronto Thoughts!

Speechless, "L.I.F.E. Toronto's Thoughts on the Show!"

During the last couple of sessions of our Learning Independence for Future Empowerment (L.I.F.E.) Program in Toronto, the group was introduced to a new TV show called Speechless. The show follows the DiMeo family as they go through life and the challenges associated with moving to a new town and starting at a new school.

We’re shown the experiences of every member of the family; Maya the overprotective, sometimes meddling mom, Jimmy the carefree dad, JJ the oldest son with a great sense of humor, Ray the brainiac, and Dylan the athletic daughter.

Speechless Cast
Speechless Cast

It’s heartfelt, funny, and quite realistic as many of the L.I.F.E. participants are able to recount similar experiences they’ve had throughout their lives. This show brings Cerebal Palsy into the mainstream in a big way! It also addresses a number of assumptions about disability in order to educate its viewers in a humorous way.

The reason for the title being Speechless is because the main character, JJ, has Cerebral Palsy and uses a communication device in order to speak. It begins with the family moving to a new town and finding a new aide for JJ. Throughout the episodes, there are humorous story lines that really humanize the experience of having a disability for its viewers, who may have no understanding of disability.

The L.I.F.E. Toronto group got together to think of anecdotes they’ve experienced that are similar to those shown in Speechless.

Speechless scene.

In the first episode, JJ walks into his new classroom only to be bombarded with classmates clapping and cheering for him and nominating him for Class President. Participants in the L.I.F.E. program have experienced similar reactions from people in the public when we are out on social outings, “people come up to us and congratulate us on being out and doing activities.”

In another episode, Maya calls JJ over and over again because he failed to show up for his physiotherapist. The group can empathize with JJ on this one and share their similar experiences; Marissa says that she often ignores calls when she is driving her chair because she is staying safe and attentive – whilst also recognizing that not answering her phone may cause people to worry about her.

In the first season, JJ meets Claire, an avid gymnast who is in a wheelchair while she recovers from a gymnastics injury. They become close and JJ decides to tell Claire that he has feelings for her, despite his fear of being rejected. The L.I.F.E. participants can relate to the fear of rejection; rejection from schools, sports teams, programs, and jobs. Jess told the group about her college experience. She made a few good friends throughout the program, but they stopped talking to her near the end of the school year. Jess felt like she had been taken advantage of, she felt they had been her friends to look good for the teacher. The experience caused feelings of rejection for Jess as she left college feeling as though she’d been used.

Jess and Marrisa, participants of our L.I.F.E. Program in Toronto.
Jess and Marissa

We thoroughly enjoyed the Speechless episode called HERO. This episode talks about “inspiration porn.” When Kenneth asks what that is, Ray explains, “it’s a portrayal of people with disabilities as one-dimensional things to only exist to warm the hearts and open the minds of able-bodied people.”

In this episode there is a speech competition and a student who hardly knows JJ decides to write a speech regarding how JJ is his hero.

The L.I.F.E. Toronto group has had similar experiences where people have treated them as if they are “inspirational”. Jess has had some interesting experiences where new PSWs show up at her house and talk to her as if she is a baby. Once they see her college diploma, their tone immediately changes to, “Wow, you went to college!”

Another participant had an acquaintance say to her, “my husband and I could learn some things from you. We think that we have problems and are depressed but then I look at you and realize we don’t have it so hard and shouldn’t complain.” This comment really hurt the participant.

“[inspiration porn] is a portrayal of people with disabilities as one-dimensional things to only exist to warm the hearts and open the minds of able-bodied people.”

Evan shared an experience where his PSW called the attendants at his old apartment “angels”.  L.I.F.E. Toronto staff have also had strangers approach them during outings to compliment them on what a great job they are doing. These types of compliments are quite silly, as the staff are just doing their job. Complimenting staff for no reason can also send the negative message that you assume that people with disabilities are somehow exceptionally difficult to work with.

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Evan

In another Speechless episode called CHEATER, Maya and Jimmy learn that JJ has been cheating on his exams and that most of JJ’s teachers have been knowingly letting him off the hook. The L.I.F.E. group can relate to this, as some of them have had similar experiences where they forgot to pay their fare on the TTC but did not get questioned or reminded to pay by TTC drivers and fare inspectors.

The L.I.F.E. Toronto group has really enjoyed watching the first season of Speechless. The participants and staff all agree that the show has done a great job in portraying the experiences of persons with disabilities and their families, while dispelling disability-related stereotypes in an empathetic and often hilarious way. The group is eager to continue watching Speechless as soon as the next season becomes available.

Want to learn more about some of the important, fun, social, & general life skills we aim to provide young adults with disabilities who are transitioning to adulthood? Check it out here: http://bit.ly/modcLIFE

Madison. ".. it wasn't long before she was able to start standing on her own." - New Community Blog Post!

Let’s Talk About: Madison!

Madison. ".. it wasn't long before she was able to start standing on her own." - New Community Blog Post!

Last summer, we met little Madison. In just one short year, she has opened the doors to a world of independence with hard work, and your commitment to help!

Madison’s family found March of Dimes Canada’s Conductive Education® (CE) Program after discovering that Madison wasn’t meeting her developmental milestones as a baby. Her parents worried that she would be facing a lifetime of frustration and challenges. But, because CE is one of the only programs available to very young children in Canada, it was a perfect opportunity for her to start facing those challenges with a supportive team right beside her.

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In her first CE session, she learned to sit independently! It wasn’t long before she was able to start standing on her own, and learning to walk with her walker.

Now, a full year later, Madison is a girl on the move! She’s a bright and confident child who loves learning how to jump and how to use her quad canes. She is working on stamina, core strength and balance, controlled breathing and purposeful movements of her body. She is able to figure out for herself how to change positions and stand independently. Most importantly, she has found her voice – she advocates for herself, she makes sure she is heard!

Check out this video explaining our Conductive Education Program, which also features Madison!

She swims! She plays with her friends! She rides her horse! She can conquer ANYTHING that life puts in front of her. Today, she takes charge of her world like the little fighter she is! Way to go Madison!

CE® is also one of our donor funded programs, partly funded by our Door-to-Door Program, which runs from November to late March. If you’re interested in volunteering as a canvasser for this year or the following, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!

 

Andrea Luciani - picture of her smiling - "..I like to use the word ABLE when it comes to my progress."

Let’s Hear From: Andrea Luciani!

Andrea Luciani - picture of her smiling - "..I like to use the word ABLE when it comes to my progress."
Written by Andrea Luciani

I was born with cerebral palsy and I assumed from a young age that my parents would always do everything for me. I never thought that someday I would grow up and live an independent life, despite my disability.

But, thanks to March of Dimes’ Conductive Education® (CE) Program (http://bit.ly/ModcCEP), I have been able to turn my disabilities into abilities! I’ve been a part of the CE® Program since I was 6 years old. I am now 23 years old and the climb  hasn’t been easy. Cerebral palsy has affected all aspects of my life, including my mobility, coordination, posture, and my ability to do daily living activities independently.

Today, I like to use the word ABLE when it comes to my progress. I am able to sit down and get up independently. I am able to walk using single point canes. I am able to get from room to room on my own in my house. Every day, I focus on what I am able to do!
The CE® Program has been instrumental in my life.

Andrea Luciani screenshot

March of Dimes Canada’s CE® Program is designed specifically for people with neurological motor disorders and offers an alternative group setting approach to rehabilitation. CE® didn’t just give me tools to help my mobility; it also provided me with a voice. Instead of my parents or others speaking on my behalf, I learned to advocate for my own needs. I may need special accommodations to aid in that process but I make sure I am heard!

Thank you! Because of your generosity, and my wonderful teachers at CE®, I have grit! I have learned to never give up, keep trying, keep learning new ways to do something, and always strive to conquer! If wonderful programs like CE® did not exist due to lack of funding, many of my accomplishments would not have been possible. You have literally changed my life! I hope that CE® can continue to have a profound and lasting effect on every participant’s life.

Thank you for taking the time to read my letter.

CE® is also one of our donor funded programs, partly funded by our Door-to-Door Program, which runs from November to late March. If you’re interested in volunteering as a canvasser for this year or the following, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!

Life’s a beach for more people now at Lakeside Park

by Lorraine Nadeau

Access to the beach has taken on a new dimension at Lakeside Park in St. Catharines thanks to the addition of a Mobi Mat. A Mobi Mat is a portable walkway that sits on top the sand and creates an accessible path down to the water. While Lakeside Park is a regular destination for P.E.T. outings, this past trip was highlighted by the fact that our consumers using wheelchairs and with limited mobility were able to stroll out onto the beach and sit at the water’s edge.

P.E.T. Consumers Liane Roberts and Sarah Hamlin on the Mobi Mat

 

Pictured here are Liane Roberts and Sarah Hamlin, two P.E.T. consumers who have never been able to go out onto the beach before.  They were all smiles and enjoyed being able to easily wheel out onto the beach for the first time.  While we were there, it was clear we weren’t the only ones enjoying the beach’s new feature. The accessible pathway was also actively being used by other beach goers including seniors, children and moms with strollers, all of whom were just as pleased with the ease of access.

P.E.T. Consumers Liane Roberts and Sarah Hamlin on the Mobi Mat enjoying the water at Lakeside Park

A first for the region, the city wants to add other Mobi Mats to its beaches, and is looking for community partners to help support some of the costs. In addition to the Mobi Mat, the City of St. Catharines is stated to renovate the out-dated washrooms with increased accessibility and build a new pavilion so our future visits will be even more enjoyable.

The Personal Effectiveness Training Program (P.E.T.) is a therapeutic day activity program designed to enhance the quality of life of adults with disabilities and/or acquired brain injuries.  The program provides structured activities that promote the development of social, cognitive, physical and emotional skills that will lead to increased independence and community integration. The program is delivered in partnership by March of Dimes Canada and Brain Injury Community Re-Entry. For more information visit: http://bit.ly/MODCPET

Jamie’s thoughts on the Federal Election Forum on Accessibility and Disability

On Tuesday, September 29th, one of our L.I.F.E. Mississauga Instructors, Jamie Hutchins was able to attend the Federal Election Forum on Accessibility and Disability. Below are his thoughts on how the forum went:

“Yesterday, there was a forum concerning issues of accessibility and disability. Federal election candidates from various Toronto ridings were present to discuss their party’s platform regarding disability and accessibility.

Mike Sullivan represented the NDP, Arnold Chan. the Liberal Party and Sharon Danley, the Green Party. The conservative party was contacted, but no member volunteered to come and speak to those issues.

 

Federal Election Forum on Accessibility and Disability
A snapshot of the crowd at the forum on Accessibility and Disability
As for the discussion itself, there were several key points that I found intriguing. Primarily, all parties insisted that the largest adversary to the disability/accessibility movement is the Conservative government. Each federal representative said that the largest obstacle to adhering to the UN Convention on Rights of Persons with Disabilities has been the Conservative government.

 

All parties, except the Conservatives, have vowed to fulfill its international (and ethical) commitments. Furthermore, the NDP and Green party explicitly stated that they intend to create a national policy on accessibility and disability (Canadian Disabilities Act). Although Arnold Chan also expressed a desire to legislate such an act, he was not able to comment whether it was on the executive’s (Trudeau and his potential cabinet) agenda.

 

Secondly, I was astounded at the depth of the questions. To be clear, this discussion was specifically designed to appeal to persons with disabilities. Some of the questions designed covered topics including a Canadian Disabilities Act (CDA), physician-assisted suicide, a national housing strategy, disability representation in the HoC, adherence to the UN conventions and an increased pressure on provincial governments to administer better services.

 

Each speaker outlined his/her party’s policy concerning the aforementioned issues. Many candidates repeated old adages of “equality of service”, “reducing poverty”, “more consultation with community agencies and persons with disabilities”, “more adaptive equipment” and “an attitudinal shift”. However, both Sullivan and Danley offered more substantive policy changes should their parties be elected. Sullivan expressed his party’s commitment to enact the CDA within a year. Furthermore, the NDP is the only party to have a committee set up to constantly critique the party’s direction. The committee’s job is to meet with community agencies, listen to their advisement and consequently “hold the party’s feet to the fire”, if they alienate stakeholder rights. Alternatively, the Green Party has advocated to design a national equipment fund so that people with disabilities can exercise their right to live independently.

 

Thirdly, I was impressed by the turnout and audience participation. Peoples with disabilities were very well-represented and their questions were very specific to their disability. It was exciting to see such human agency from the group. Such a high attendance of persons with disabilities helped solidified the rights and equality rhetoric that accompanied most of the discussion. There was a wide representation of the disability community including persons who are blind, deaf, using mobility devices, having episodic disabilities, cognitive disabilities, learning disabilities, etc. This stressed upon me the importance to try to remedy the current situation regarding persons with disabilities. As a political party looking to get elected, it not only makes sense to move forward because it is proper (and moral) to have disability rights enshrined in legislation, but also because persons with disabilities represent such a large portion of the vote.

 

Lastly, Ryerson did an excellent job hosting. The adaptive devices allowed for all members of the crowd to participate. In conjunction with the captioning service provided, there were multiple people using both SLQ and ASL to communicate effectively with the deaf audience members. Student volunteers were constantly in the right place to help those with blindness find their seats. There was also one large aisle that allowed mobility devices to go back and forth. Also, I was impressed with the live tweeting of the discussion as this allowed questions to flurry in from Alberta.”