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.
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.
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
As we continue our volunteer appreciation throughout the year, we want to reiterate: Volunteers are so important to March of Dimes Canada. Thanks to them, we’re able to do the work we do.
What is their favorite part about volunteering with MODC?
Inspiring the patients they see and giving them hope.
What are 3 adjectives that they use to describe themselves?
Outgoing, Persevering, Insightful.
What is their favorite hobby?
She loves to read.
What is their favorite TV show?
Outlander.
Why are you nominating this volunteer?
Stroke recovery is like climbing a mountain. It takes hard work, perseverance and patience. But the view from the top is spectacular. – Lara
Lara’s positive attitude and awareness of the challenges that someone goes through after experiencing a life changing event, enables her to really touch the hearts of the patients she visits at Toronto Rehab as part of Peers Fostering Hope (PFH). The individual Lara supports in the community as part of the Community Visiting pilot for PFH has taken steps to get out into the community more than she would have without Lara’s assistance.
According to Paul Asselin, the Social Worker she reports to when she volunteers at Toronto Rehab, “Lara has made some terrific contributions and offered a lot of support to our patients over the years. I remember not long after she started here, one patient referred to her as an angel. She has received similar compliments such as: ‘Reassuring, good to hear it from someone who’s been there,’ ‘She gave me confidence.’ etc.
What strikes me about Lara in particular is that she finds the strength to come in, even when there are so many other things going on in her life. Through all of these life events, some good and some challenging, she manages to stay focused and present when she is visiting.”
Lara exemplifies what it means to be a PFH volunteer based on the feedback she receives from patients at the hospital. I would also support what Paul Asselin has said above. She is extremely dedicated even when she has a lot of other challenges going on in her life. She also is eager to get involved in new opportunities such as when she decided to be a part of the Community Visiting pilot. Outside of MODC she is involved in many other community projects. As a UHN Patient Partner, she has served on several committees, providing the patient perspective on various initiatives. She also co-founded with stroke survivor, Dr. Howard Rocket, Rocket Ride 4 Rehab in 2015. This static cycling event raises money for the Rocket Family Upper Extremity Clinic at Toronto Rehab. Lara is very deserving of recognition. She is also respected among her peers.
– Rebecca Phinnemore, PFH Coordinator
How long have they been an MODC volunteer?
Since 2014
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
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.
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
Our Learning Independence for Future Empowerment (L.I.F.E.) Program has made a difference for many of its participants. Instead of us telling you the many different ways, we thought it would be best said from the participants and parents. Over the next week, we’ll be sharing testimonials through these blog posts!
Jaipal’s mother, Satpal Dhanjal writes:
“For me this program is amazing! Oh my god! Jaipal especially is really enjoying the program. We were talking earlier as we prepared dinner and he just kept going on and on about the program.
Jaipal can’t wait to get going in the morning to avoid being late to the L.I.F.E. program. He gets up, washed and dressed independently to avoid being late.
To be having this lengthy conversation with my son shows the difference the program has made. My son no longer ignores me, there is no more swearing, he treats me with respect, we have conversations, he seems genuinely interested in me and grateful for the things I do as his parent – I feel appreciated.
Tomorrow I am meeting with the agency, Mike Bennett Edge, that referred us to the L.I.F.E. program and I can’t wait to discuss how far my boys have come since attending the program.
There is really so much more to say such as how independent my son has become, taking the public transit to all the events L.I.F.E. attends in our community. I have also attended a few of the community events and watched her at work and she is amazing with the participants! They try everything and do many activities. I just can’t say enough.
Thank you!”
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:
In May 2016, I had a Lt Hemorrhagic Stroke. Prior to that, I had been quite physically active, hiking, going to yoga , working out at our local YMCA and snow shoeing in the winter. I did the Terry Fox Run every year. After my stroke, I couldn’t do any of those well loved activities.
Initially, I had in-home therapies through CCAC, to improve my speech and walking skills. In late August, my walking balance had improved and my OT (Occupational Therapist) asked if I had ever heard of Urban Pole Walking. I had several friends who had bought poles, with the intention of pole walking in the summer, so they would be ready for snow shoeing in the winter. However, they had never used them. I got the contact name from my therapist and called the contact person for our local March of Dimes Canada Urban Pole Walking Group. This also led me to Orillia’s Stroke Survivor’s and Caregiver’s Support Group.
When I commented that I was “pretty tippy” and another person said “ We’re all pretty tippy here” I didn’t feel so alone.
My friends started taking me to our local mall on Tuesday mornings for pole walking. It was a challenging, but wonderful experience. I was able to connect with people, who were experiencing the same struggles and successes as I was. When I commented that I was “pretty tippy” and another person said “ We’re all pretty tippy here” I didn’t feel so alone. I had never met other people who had survived a stroke before and it was wonderful to talk to them over coffee, get tips and talk about shared experiences.
Carol Agnew describing her experiences with Urban Poling – (Video to come!)
The first day of pole walking was really hard. I couldn’t get my poles and my feet to work together. I certainly couldn’t walk & talk!
However, as the Tuesday mornings went by, I was able to go longer distances and soon discovered that I could pole walk while talking. I was improving my both motor skills and endurance, as well as having a social experience with other stoke survivors and my friends.
..I have gained much more. My motor skills and endurance have improved as well as my speech. I have also made several new friends. Going out weekly for a fun activity has made me feel less isolated.
My initial goal for joining the pole walking group was to improve my walking skills, my balance and my endurance for physical activities. However, I have gained much more. My motor skills and endurance have improved as well as my speech. Just as important is that I have also made several new friends. Going out weekly for a fun activity has made me feel less isolated. I have gotten new links to community resources from other survivors, as well as the wonderful volunteers and Pauline Berry from March of Dimes Canada. An unexpected bonus for me was that last weekend, I was actually able to go snow shoeing. That was something I had thought I would never enjoy again. I certainly didn’t go far- just to the fence & back, but I was out enjoying winter again with my friends. Every small success is really a huge accomplishment for a stroke survivor.
In the lead up to World Stroke Day on October 29, 2017 we’ve partnered with UrbanPoling to help promote keeping an active lifestyle through a simple but effective activity – walking! During all of October, Urban Poling will donate 10% of online ACTIVATOR™ pole sales to our Stroke Recovery Canada® (SRC) Program. Take a look at the ACTIVATOR™ poles specs & the benefits of using them: http://bit.ly/UPACTWSD17
If you’re near a participating Guardian & IDA store (http://bit.ly/MODCWSD17) & decide to buy an ACTIVATOR™ Pole in person, donating $10 to SRC will also get you a free set of snow baskets (for your poles in Winter!).
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
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.
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 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.
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
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.
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!
Here’s a fantastic example of an outcome influenced by public opinion and concern. It goes to show that you should always try and let your voice be heard!
Niagara Specialized Transit Users Win Reprieve of Proposed Fare Increases
Written by Rhys Evans.
Hello my name is Rhys Evans I am currently a 24 year old Niagara College student currently enrolled in the Social Service Worker program. I am also a graduate of Niagara College’s Recreation and Leisure as well as Recreational Therapy programs. I value staying involved in my community by doing things like representing the town of Pelham on the Joint Accessibility Advisory Committee and participating in wheelchair basketball.
The Region of Niagara recently awarded BTS, a company from Vaughn, the Niagara Specialized Transit contract for transporting people with disabilities to medical appointments, school or employment. Part of the agreement was a proposed fare increase for riders, many of who are on fixed or reduced incomes. In some instances the increases would have been as great as 300%. I got a letter in the mail along with other users to inform us of these changes.
I was unhappy with the lack of any consultation, or any transparency in how this had been done. l was also angered by the proposed increases that would further limit people’s independence. I firstly contacted the Mayor of Pelham, Mr. Dave Augustyn with my concerns. I also used social media, letters to the local paper and spoke to the Joint Accessibility Advisory Committee (that I am a member of), in order to urge the council to reconsider the proposed increases.
Regional Council of Niagara discussed the concerns voiced by users like myself that were presented at their June 28th meeting, and made the decision to suspend the increases, and revisit the issue in 2017.
This date was chosen because the Accessibility for Ontarians with Disabilities Act ( AODA ) will have enacted the Transportation Standard that will provide a clearer framework about what fare charges should be. The expectation is that fares will become more affordable for Ontarians with Disabilities.
Whatever the outcome, it is hoped that there is full consultation with the user group before any final decision is made, because no such consultation occurred this time, and if things had remained unchallenged many users may not have been able to continue with this vital service.
In the meantime those using the system are grateful to Regional Council that they can still attend medical appointments, therapies, and school or work at a reasonable cost. As a user and member of the Joint Accessibility Advisory Committee, I shall continue to monitor the progress on this issue and make the public aware of any future developments.
Bob Hallett (Great Big Sea) and Valdy have joined 13 singers from Spectra Talent Contest to record “I’m the Lucky One” – a charity single in support of March of Dimes Canada, Easter Seals Canada, and the Spectra Talent Contest (a non-profit organization that celebrates diversity in music).
“I’m the Lucky One” is a song about finding your soulmate, a rare and transformative experience. Written from the perspective of an able-bodied person who falls madly in love with someone with a disability, this powerful love song addresses ableism and accessibility issues.
Spectra Singers 2016
Spectra Singers 2016
Spectra Singers 2016
According to Ralph Hamelmann, RACA Executive Director and song co-writer, the inspiration for “I’m the Lucky One” came several years ago. “At the time, I was a part-time Independent Living Assistant at Tobias House and had invited a couple of their Consumers to my home for a Christmas Eve gathering. When another guest found out I had invited people with disabilities, they said ‘Oh! They’re so lucky to know you!’ To this, I replied, ‘Not at all. I’m the lucky one!'”
Hamelmann adds, “From my experience, a fair number of people with disabilities experience isolation, which can lead to low self-esteem. I wanted to write a song that celebrates the beauty and authenticity I’ve witnessed firsthand in this community.”
This song is part of Spectra’s social media campaign #AllAbilitiesAreSexy, which aims to end the stigma around disabilities and is supported by Margaret Trudeau. See more about this and you can also purchase “I’m The Lucky One” here: http://thelucky1.ca/
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.
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.”
March of Dimes Canada Community Blog 