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

Malic, the superhero!

Words by William Shatner

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Malic was born in Dubai and was diagnosed with cerebral palsy as an infant when his parents noticed he wasn’t meeting important developmental milestones. They immediately found physiotherapy for him, and continued to maintain a similar structure for him at home, reinforcing what he was learning in his therapy sessions. Though steady, his progress was slow.

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Malic at the museum!

Malic’s parents had heard of Conductive Education® (CE), but it wasn’t offered in Dubai. After the family moved back to Canada, they signed Malic up for March of Dimes Canada’s Conductive Education Summer Camp where they learned that the sky was the limit for this bright and engaging young boy!

 

After their first assessment, the family walked away feeling hope and excitement! The great staff at March of Dimes Canada knows that it is important not only for Malic to believe that he can do anything and everything he wants to do, but that his family believes it too! Malic is continually given challenges that are outside his comfort zone, and he rises to the occasion every time! He is always quick to say “I can do it myself…”

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Those are words we LOVE to hear at March of Dimes Canada. Those words are why we do what we do.

He loves superheroes, but to me, Malic is the superhero!

Malic’s accomplishments are all 100% his own. He loves to dance, listen to music and play video games just like any other boy. He loves superheroes, but to me, Malic is the superhero! The love, compassion and determination he shows every day of his life exemplifies the March of Dimes spirit.

People like Malic are why I support March of Dimes Canada. I hope Malic’s story will inspire you as it has inspired me.

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I am also pleased to remind you that March of Dimes Canada has been accredited by Imagine Canada’s Standards Program for excellence in financial accountability and transparency, fundraising and governance. Learn more about our Conductive Education® Program by visiting the following link: http://bit.ly/ModcCEP

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!

 

"Maida de Stein has been canvassing for MODC for over 2 decades!"

Let’s Talk About: Maida De Stein!

"Maida de Stein has been canvassing for MODC for over 2 decades!"

Written by Tina Siegel

Maida de Stein has been canvassing for March of Dimes Canada for over 2 decades, just like her mother used to do, and she has it down to a science.

Every year, Maida gets out her lists of phone numbers and addresses, and calls ahead to ask for pledges. She keeps careful records, then only goes to the homes of people who have agreed to donate. It’s quick and efficient.

That’s one secret to Maida’s success: organization.

‘But it’s a chance to catch up sometimes, too,’ she adds. ‘I know everyone on my route. I have a personal relationship with them.’

Maida goes beyond her route, as well. She approaches relatives, friends, members of her book club and tai chi class – anyone who might be willing to donate, or who has donated in the past. This often takes her well beyond her assigned canvass.

That’s another secret: personal relationships.

Maida also gives as much as she gets. She’ll often propose an exchange – you donate this much to my charity, and I’ll donate the same amount to yours. Everyone wins.

And that’s the last secret to Maida’s success: mutual benefit.

The result: Maida is one of MODC’s most successful canvassers, raising about $1,500 every year for a total of nearly $12,000 since 2002. She’s the first to acknowledge that it’s hard work, but also that it’s worth it.

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Every dollar Maida collects goes straight towards supporting kids like Zachary (see photo), who are benefitting from MODC’s innovative Conductive Education® (CE) program. CE is designed to help people with neurological motor disorders like cerebral palsy or Parkinson’s to gain mobility and more independence. http://bit.ly/ModcCEP

‘It’s a tough job,’ she says, ‘but very rewarding.’

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!

Mark’s Strive for a Ride

By:  Tracy Lomond

I knew 7 months ago when we decided to start fund raising for a wheelchair accessible van for Mark that it would be a huge challenge. What I didn’t expect was that it would turn out to be like a full time job, one that would not only change me but other family members as well. It is funny to look back and see a family of very shy and passive people actually going up to strangers and asking for money, merchandise, and haggling prices at flea markets all in the name of making money for Mark. Mark is a 17 year old boy with severe cerebral palsy who is wheelchair bound and requires full time care. He is non verbal and for those of us who know him best you can either tell what he wants just from experiencing his daily routine, by his smiles for yes or shaking of the head for no or sometimes you can just see it in his beautiful blue eyes.  In the past two years he has had three hip surgeries and numerous treatments and appointments in Halifax, at least 9 in the past year. There hasn’t been very many months out of the past two years where we were not making a trip to the IWK. It’s heart breaking to see him go through so much. He has such a frail small body but a huge lovable personality. Once the hip surgeries were over and the chronic pain managed we decided it was time to take on the challenge of fund raising for the van. Not just because of the frequent trips to Halifax or the fact that the van we are currently driving will not see past this November’s inspection but because in February Mark will turn 18, an age when programs seem to expire as 19 is considered adulthood. The 9 trips I mentioned earlier, well those were not easy considering I had to borrow a vehicle to make the trips. I am scared to take the van I am currently driving the 22 km trip to his doctor, I certainly did not feel it could go the 400km one way trip to Halifax. So starts our journey.

One of our first fund raising ideas was selling tickets on a dozen of lobsters and 24 beverages. This was a hugely successful endeavor. Then I made up a sort of information package that I started e-mailing to everyone I could think of from local businesses to Ellen DeGeneres and Bill Gates. The information package included a flyer with Marks picture and a brief description of the purpose of the fund raiser, a letter from his occupational therapist supporting our efforts, and finally a letter from me describing in detail our situation and why we were doing the fund raising. I describe the fund raising as a full time job because it sort of took on a life of its own. We found ourselves at various malls selling tickets, gathering donated household items or clothing that we then sold off at flea markets almost every Sunday, a benefit dance, a merchandise bingo, personal donations, and even applying for any grant I could find on-line. I kept a journal of every e-mail, phone call, flea market, and a count of every book of tickets sold.

Through our personal efforts stated above and donations from clubs such as the Lions Club, the Kiwanis Club, the Royal Canadian Legion, Sydney Mines Seniors Pensioner Club and gift certificates for prizes from numerous local businesses we raised just over $12, 000. We were ecstatic to learn that we were approved for a $20,000 grant through the President Choice Children’s Charity. This was a huge piece of funding towards our goal and it definitely kept the family motivated. A huge donation of $5,000 was made by an anonymous donor. We couldn’t believe how generous people truly are. Then we won a contest through the March of Dimes and Pennzoil for $15,000 towards the retrofit (modification and conversion for wheelchair accessibility) of a vehicle. Global News Halifax picked up the story and we were on camera Nov 1st explaining our journey.

L to R: Mary Lynne Stewart, Travis Gunn, Michelle Watt, Tracy Lomond, Mark Lomond

That night at the annual Rock for Dimes concert, at the Cunard Arena in Halifax, we were presented with the contest winnings.  It was a trip that none of my family members that were able to attend will soon forget. Finally, an anonymous donor gave us the remainder of the funds approx $2,000 to complete our goal. What usually takes 1 to 1 ½ years to do, we have accomplished in six months. We are truly blessed to have friends, family, and strangers who supported our cause and allowed our journey to end with a new Dodge Grand Caravan modified with a wheelchair ramp. To say that having this van will change our lives is an understatement. It is crucial to have a reliable vehicle to travel back and forth to Halifax every 3 to 6 months (depending on the effect of the treatment) for Mark’s treatments. It is projected that these treatments will be ongoing for many years, if not for the rest of his life. With such health obstacles and life challenges, one realizes what’s important in life, and what I think I’ve learned the most is that we have to appreciate life. I believe it’s all about perspective; life is so short and frail. There isn’t a day that goes by that I don’t thank God for my family, friends and most of all my two children, Mark and Aaron. I cannot begin to express my gratitude to those who donated gifts, merchandise, money, their time and prayers. All I can say is, “Thank You, and God bless you as he has blessed me.”

I wanted to share my story, not because it was a successful journey in such a short amount of time, but because I wanted to inspire people to never give up or to be scared of a challenge… it is truly worth it in the end!

Sincerely,

Tracy Lomond