Category Archives: Friends

Who I Run For – The Adventures of Team Jake

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“You’re having strangers stay at your house?” asked my friend tentatively.

“On their honeymoon?”

“Well, we’ve never met,” I said, “but they aren’t strangers.”

My friend was mortified.

I didn’t think it was weird, and I wasn’t worried, despite the fact that our only exchanges with this couple had happened on Facebook.

Kelly and her fiancé Kevin were part of Who I Run For, a Facebook group that pairs children and adults with disabilities with athletes to create a mutual support system. The athletes and their training and events provide excitement for those who can’t be as active, and the buddies with disabilities provide a new kind of purpose and motivation that power the athletes’ workouts.

My 14-year-old son Jacob was matched with Kelly, who lives in New Hampshire, in 2014.

From the day they were matched, Kelly posted messages to Jake about her running adventures. She almost always included photos from her runs and it became clear that Kelly had recruited her fiancé, Kevin, and her son, Nick, to run for my son as well. Together they formed Team Jake.

As time passed, our family got to know Kelly and her family. We saw photos of them holding homemade signs that read We Run 4 Jake along the routes of their runs and we shared Kelly’s stress around the wedding plans, including the last minute aggravation with her wedding gown!

Team Jake came into our lives around the time that Jacob’s health started to deteriorate. We didn’t know Kelly during the 12 years that Jacob’s health was stable and he was able to ski, attend sleep-away camp and be a full-time student. She wasn’t around when we fought, successfully, to have Jake attend a regular school and she missed the time Jake was invited to listen to his favourite singer, Andrea Bocelli, rehearse before a concert.

We were matched shortly before Jake spent almost a year living in the hospital. Kelly was in our lives when Jake was rushed to the hospital and spent weeks in the intensive care unit, hooked up to machines helping him breathe. She was around when he celebrated his Bar Mitzvah as an inpatient. Kelly and her crew stayed abreast of Jacob’s challenges and frequently sent notes of support and upbeat messages to us. She also sent Jake medals from races and t-shirts and other running paraphernalia that she, Kevin and Nick collected.

One cold Sunday morning, when my husband, Andrew, Jake and I were having our weekly coffee at Starbucks, my phone alerted me to a message from Kelly with the most exciting and unexpected news: she and Kevin were coming to meet Jake on their honeymoon.

They planned their post-wedding week so that they would arrive in Toronto on a Friday and we invited them to stay with us for the weekend.

How perfect would it be if the newlyweds and Jake could run a race together? It didn’t take us long to find a race that coincided with Kelly’s and Kevin’s visit. After a brief discussion with the race director, Kelly informed me that everything was set—they would run the race with their buddy and push him across the finish line.

It all sounded great in theory, but would Jake be healthy enough for the 30-minute drive to the race?

The run was scheduled to begin at 9 a.m., but my son hadn’t been out of bed before 11 in over a year. That’s because it takes a long time to clear his airway so that he can sit up in his chair without struggling to breathe. And just two weeks earlier Jake was so ill that he narrowly avoided an ICU admission.

But Jake being Jake, and one to never miss a party (except for his 14th birthday when he was so sick he slept for almost five days) or a chance to be surrounded by friends, we had to try. So we crossed our fingers and made the plans.

I was only a little surprised when I went into his room at 7 a.m. on race day and saw a pair of large green eyes, fully awake, ready for his latest adventure. He was excited and blinked his eyes to confirm that he was ready to run with Team Jake!

Dressed in a teal blue t-shirt that read Kelly And Kevin Run For Me, my son fit perfectly between his runners, who were wearing the same shirts with the banner I Run For Jake. As they crossed the finish line, the trio gladly accepted their medals and posed for photos.

Marcy White is the author of The Boy Who Can: The Jacob Trossman Story. You can follow her on her blog at Cure PMD. Marcy is a family leader at Holland Bloorview.

Will kids make fun of him?

“The kids in his class will make fun of him.”

I sat there stunned, until I regained my composure, caught my breath and calmly stated: “then maybe this is not the right school for Jacob.”M+J - May 15 2013

The setting: the intake meeting at the new school Jacob is registered to attend in September

The attendees:
the principal of the new school, his teacher for next year, his current teacher, his current nurse, his current speech therapist, several other “officials” from the Toronto District School Board and me, Jacob’s mom.

The question: when Jacob needs a position change, which positions does he like?

The answer: he sometimes likes to sit on an adult’s lap.

The response: middle school kids are a different breed – the kids in his class will make fun of him.

There were so many ways in which I could have responded, including suggesting empathy training for the staff and students and stating my hope that the special education teacher at the new school was underestimating the sensitivity of the children. It took a ton of self-restraint to keep from pounding my fist on the table and demanding,”what type of environment is this if the first thing that comes to your mind when you hear that my son, who has severe scoliosis and frequent back pain, among many other challenges, is that he would be ridiculed for wanting to sit on someone’s lap?”

This conversation happened a few weeks ago and I haven’t been able to get it out of my mind. I’m troubled by the fact that the “powers that be”, nameless, faceless bureaucrats at the TDSB, upon studying my son’s file, recommended this school as the best fit for him. Do they condone this thinking or are they so far removed from the front lines that they do not have a true idea about what goes on in the schools they manage? Or, as I desperately want to believe, was the teacher simply wrong?

The more I ruminate over this, the more agitated I become. As my son’s advocate and his voice, I want to ensure that the transition to his new school is trauma-free and successful. He had the most ideal few years at Elkhorn Public School in an environment that was warm, friendly and productive. It was the textbook-perfect example of inclusion. Unfortunately, Jacob is graduating from Elkhorn in a few weeks and this is what necessitated his move for the next school year.

When I picture his first day in the new school, I imagine how terrified he will be. A new environment, new teachers, new kids, nobody who knows that he loves funny jokes, being pushed in his wheelchair at high speeds and interacting with kids his own age. These images don’t get easier when the teacher’s voice echoes in my mind: the kids will make fun of him.

Jacob has many years of wonderful memories of meaningful interactions with his typically developing peers, at school, at extracurricular programs and over the summer breaks. To my knowledge, he has never experienced any negative comments from kids (I wish I could say the same for comments from adults, but unfortunately that would be a lie).

I’m re-evaluating Jacob’s school placement for September and I need your help: for those of you who have typically developing kids in middle school (grades 6 – 8) do you think your kids would make fun of a child like Jacob because his needs are different? For those of you with kids with special needs in middle school, are your children subject to ridicule by their peers?

Welcome home Felix!

Once upon a time there was a little boy named Jacob. Jacob had 2 cats that he loved but was terrified of all other animals. One of the only ways to stop Jacob’s incessant crying and screaming was to follow his cats around the house and always stay within sight of them. Hours and hours of this activity never bored this little fellow (the cats on the other hand….)

School trips to the zoo or a petting farm were disasters, as little Jake would spend most of the day screaming until all animals were out of sight and hearing range. He was so scared that if we were out for a walk and a dog was on leash heading towards us, we would have to cross the street to avoid the pooch. Jake’s fear was known to all who cared for and about him, and his scared, white-as-a-sheet face was something we tried to avoid by staying away from any animals other than his beloved Spot and Brother.

Fast forward a few years and nothing changed. Walks were still filled with plenty of dog-avoiding street crossing and in-home cat following.

Last year a friend started posting about the work her family was doing to get a service dog for their PMD son and I started thinking about how great a dog would be for Jake. I reasoned that if he had a dog of his own, it could be trained to stay with him and we wouldn’t need to follow Spot and Brother around the house. If Jacob had a dog, they could hang out together and maybe, just maybe, some of Jake’s screaming would subside.

Just one problem stood in the way….Jacob’s fear. I had to figure out how to show him that dogs are fun and playful, not scary.

Pictures of dogs were ok for Jacob, and so were stuffed animals that resembled dogs. Friends with canines helped us, by letting Jacob spend a bit of time with their pooches but only until Jake let us know he had enough. Gradually, he started warming to these familiar furry creatures until I noticed one day that Lola, Taryn’s Goldendoodle, was sitting on Jake’s feet and that helped calm his crying. That was when I knew Jake had become a dog-person!

Thanks to Chris and the incredible team of puppy raisers and trainers at National Service Dogs, Jake now has his own furry foot-warmer named Felix.

 

Advocacy Pays Off – CJN Article

 

 

 

 

 

 

 

Mom’s advocacy pays off: disabled boy attends class
Frances Kraft, Staff Reporter, The Canadian Jewish News, Friday, November 2, 2012

 
TORONTO — Two weeks ago, on Oct. 20, 10-year-old Jacob Trossman began to attend Elkhorn Public School three full days a week, after seven months of advocacy by his mother, Marcy White.

In late August, The CJN reported that the Toronto District School Board (TDSB) wouldn’t allow the youngster to attend the school more than one half-day a week, as he did last year for the first time. Jacob has Pelizaeus-Merzbacher Disease and can’t walk or talk.

His first week attending three days was “amazing,” White said. His friends at the school “just flocked to him.” One boy started to read him a book, and a group of boys asked to take him out to the playground after lunch, she said.

“From the first day, the kids were thrilled, and he was thrilled. For anybody that was concerned about a transition period, it’s been nothing but big smiles and lots of laughter,” White said.

“All I want is for my son to have the academic and social education he deserves,” White said in an interview in August. She added that there were no children his age at his cognitive level at Sunny View Public School, where he is part of a program that works on communication in partnership with Holland Bloorview Kids Rehabilitation Hospital. Jacob is at his age level cognitively, his mother said.

As well as the social benefits, White is pleased that Jacob is learning from a standard curriculum with his fellow students at Elkhorn.

She credited the TDSB’s Sandy Spyropoulos and her team for the new development. White said she’d been working with Spyropoulos and her team since the beginning of the school year.

Spyropoulos, who is chief academic officer for special education programs and student support services, told The CJN in an email she could not discuss individual student cases, but that she is happy that everything worked out.

The TDSB ensured that proper supports were in place at the school for Jacob, and no construction had to take place, White said.

At one point, she was told that Elkhorn needed a ramp in order for Jacob to attend the school. However, the school already had a ramp and even a disabled parking spot, she said in August.

Reflecting on her persistence in the past months, White said, “I kept persevering, because I knew it was the right thing for him.”

Article from the Canadian Jewish News in support of Jacob:

Parent fights to get handicapped son into school

Frances Kraft, Staff Reporter, Friday, August 31, 2012
Tags: Jewish learning News

0 Comments

Jacob Trossman, with Cheryl Libman, who taught him last year at Elkhorn Public School.

TORONTO — Marcy White has spent the last five months fighting for her 10-year-old son Jacob Trossman to attend Elkhorn Public School more than one half-day a week, but on Aug. 27 she was informed that the Toronto District School Board wouldn’t allow it.

Jacob has Pelizaeus-Merzbacher Disease and is unable to walk or talk. White feels the school meets his needs in ways that other schools can’t.

“There’s no way I’m letting this go,” she told The CJN after learning of the decision. She said she was not given a reason that Jacob would not be allowed to spend more than half a day a week at the school.

In response to a request to talk to Donna Quan, the board’s deputy director of academics, who made the decision, TDSB communications officer Ryan Bird said that, “due to privacy and confidentiality concerns, we cannot comment on  specific cases. However, I can say that whenever decisions are made with specific accommodations, the dignity and safety of students is paramount.”

TDSB trustee Howard Goodman has been an advocate for Jacob and – as he put it – a navigator/translator for White and TDSB staff since she contacted him for help earlier this year.

In March, The CJN published White’s first-person account about Jacob’s experience at Elkhorn, where he was integrated for a half-day a week last year. She wrote that it was an “outstanding” arrangement, and that everyone benefited from it.

White said that within a week of her article appearing, she received a phone call from then school principal Paul Farrell to inform her that the TDSB wanted the arrangement to end by Easter, but he arranged for Jacob to stay until the end of the school year, she said.

White would like her son to be at Elkhorn three days a week, or even five.

“All I want is for my son to have the academic and social education he deserves,” White said. “He’s been there for over a year. We should know that it works.”

She said that at his other school, Sunny View Public School, there are no children his age at his cognitive level, and the school doesn’t follow the standard curriculum, although the staff is “caring [and] loving.” He takes part in a communications program there.

White said that Jacob is at his age level cognitively, but that people are quick to assume he doesn’t understand, because he doesn’t speak and has trouble moving.

“He can understand things, and can respond and learn,” she said. At Elkhorn, there were also social benefits: for the first time, he had play dates with his schoolmates.

White noted that there were benefits for other students as well. In a letter she provided, Cheryl Libman – Jacob’s teacher at Elkhorn last year – said Jacob’s impact was “so significant that his peers ‘argue’ over who will sit beside Jake, walk beside him down the hall, hold his hand or help him during art or French.”

She also wrote that Elkhorn has been “an incredibly accepting and safe” environment for Jacob.

White said there have also been letters of support from parents at the school.

She said she was told that there needs to be a ramp at Elkhorn for Jacob to attend the school. But, she said, “there is a ramp. There’s even a handicapped parking spot in the lot.”

Here is a copy of a blog post from my friend Laura in support of Jacob.

End of your arm

Wednesday, August 8, 2012

The Toronto District School Board Has No Shame

Thank you to David Menzies from SUN TV for doing a story on my friend Marcy and her beautiful son Jacob. 

And thank you to all my blogging buddies who have posted the story: you are my partners in crime and I love you.

I’ve been trying to help Marcy get this story out there.

Why is it that a kid in a wheelchair cannot be accomodated, but yet there is the budget and ongoing support for Afrocentric schools and a public school in Toronto that has virtually become a Muslim parochial school.

There are arts schools, and alternative schools, but one disabled kid-who has finally made friends with regular kids cannot be accommodated?

But again, the question is how do you shame people who have no shame?

Why are they choosing to make life difficult and indeed-excruciating for this family. Why-when they can choose to make his life better, more enriched and more meaningful are they punishing him?

Hasn’t Jacob Trossman suffered enough?

Haven’t his parents already spent enough hours trying to get him the education that he deserves, and that he is entitled to?

Why shouldn’t their municipal tax dollars go toward an educational appropriate setting for a kid whose body has trapped him, but whose mind is working, curious, loveable and can learn a lot of things?

Why does the TDSB hate disabled children?

Are there any more families out there that are being punished by the TDSB?

Are there immigrant families who cannot deal with this situation? I bet this is the tip of the iceberg.

These people are supposed to be the “experts” and the “specialists”.

Of all the pedagogical disciplines they gravitated to Special Education. Nobody has forced them to choose a career dealing with retarded, disabled and sick children.

Is there something not incredibly sick about the way this family is being treated?

How can these people look at Jacob and choose to make his life harder?

OH RIGHT: They have never met Jacob.

They never have to look him in the eyes.

Shame on the Toronto District School Board-a despicable lot you are.

Please share this story.

Let’s shine enough sunlight on this story that they have no choice but to “allow” Jacob Trosser to attend the school that wants him, that can nurture his mind and spirit and that accepts him for who he is.

Check out Jacob’s web site if you want more information about PMD.

Let’s make a difference.

From the Toronto Sun Thursday August 16, 2012: TDSB must accomodate Jacob Trossman

TDSB must accommodate Jacob Trossman

By Farzana Hassan

First posted: Thursday, August 16, 2012 06:50 PM EDT | Updated: Thursday, August 16, 2012 06:53 PM EDT

The Toronto District School Board must do a better job of upholding its Equity Policy Statement by accommodating Jacob Trossman in Elkhorn Public School Toronto for three days a week as requested by his mother, Marcy White. This disabled grade 4 student has every right to receive the education he seeks and deserves.

But despite several appeals by White, the TDSB continues to deny her requests to accommodate her child’s special needs.

This is in obvious contravention to the TDSB’s policy of providing maximum opportunities to students, “particularly those persons with disabilities whose voices traditionally and systemically have been marginalized and excluded.”

It isn’t clear what the TDSB’s reasons are for disallowing Jacob from attending Elkhorn. Members of the board have offered a number of explanations, ranging from reasons as inane as the possible reaction of other parents to Jacob’s presence at Elkhorn, to the disingenuous explanation that the board is unable to construct a ramp for Jacob. It turns out the school already has a ramp for disabled children. Hence, in the event of a fire, Jacob would be able to exit the school as other children.

After many futile attempts to convince the TDSB, White has taken her story to the media, and was first reported by Sun News Network’s, David Menzies. Jacob is a bright student who is simply under-challenged at Sunnyview P.S. Counting the number of days he has been at school repetitively, five days a week, is hardly Jacob’s idea of an engaging learning experience.

At Elkhorn, where he attended class every Friday afternoon until June, 2012, he was exposed to various disciplines including French, Music and Art. Not only was he intellectually challenged, he was also socially integrated and made many friends including Kaylum, who according to his father Amir Karmally, was inspired to perform acts of kindness and civility out of regard for Jacob’s condition.

Other children were similarly influenced.

Furthermore, none of the staff, parents or children felt in any way burdened by Jacob’s presence. They expressed no concern whatsoever over the arrangement. In fact, Jacob’s teacher, Cheryl Libman, welcomed Jacob’s contributions at school and the two have enjoyed a fruitful teacher-pupil relationship all year.

With such positive outcomes, why would the TDSB come up with objections that appear more like excuses?

Jacob attended both Elkhorn and Sunnyview for more than a year, before things began to change for the worse. The TDSB was alerted to the situation, ironically after Jacob’s mother wrote an article in the Canadian Jewish News about her son’s experience at Elkhorn.

The child was subsequently barred from attending the school.

Is the TDSB’s refusal to accommodate the request of a loving and dedicated parent like Marcy White the result of intransigence over trivial issues rather than genuine concern for Jacob?

According to the TDSB’s own mandate, all disabled children must have equal accessibility to a well-rounded education. Clearly, that mandate has not been executed for Jacob at Sunnyview, despite the fact that the staff at that school is supportive and caring.

The TDSB must implement its policies in a more compassionate manner.

Children with disabilities must be given every opportunity to blossom through learning experiences that are tailored to their specific needs. And who is better able to decide what they are than Jacob’s own mother?

More on our TDSB struggles

For the first time in his life, 10-year-old Jacob was finally being invited to birthday parties and play dates and learning in a classroom with kids his own age, something we were very excited about. Unfortunately, the Toronto District School Board will not allow Jacob to increase the amount of time he spends at the school he had been going to for 1 afternoon a week for over a year. It is a regular school, with regular kids, where he has made friends and loves his teacher. But apparently that’s not reason enough for the TDSB.

The following is the radio interview that gives more details about the battle we’ve been fighting with the Toronto District School Board:

AM640 Interview August 9,2012

Jacob vs the Toronto District School Board

The Toronto District School Board (TDSB) simply doesn’t understand kids like Jacob, kids who have challenges but are still capable of learning along side their able-bodied peers. After my article Doors Open Wide appeared in the press, the TDSB officials wanted Jacob to stop attending Elkhorn, the school where he made friends and was exposed to an age-appropriate curriculum. They were afraid of the precedent that the arrangement might set. I wanted Jacob to be a more permanent student at the school.

So began a four month ‘discussion’ that included offers of Jacob spending time in the basement of a different school so he could “watch other kids participate in phys-ed”, questions about how Elkhorn parents might react to having Jacob at the school and safety concerns raised by a TDSB representative who never met Jacob and hadn’t been to Elkhorn.

The final decision was made on July 20. The TDSB refused to allow Jacob to begin the school year with 3 days a week at Elkhorn so I decided to share this story and let people know about the discrimination we have faced with the senior staff members at the TDSB.  They have chosen to ignore the recommendations of the professionals who have seen him at Elkhorn and witnessed how he interacts with the other kids and participates in the classroom. Instead, they have decided to put their bureaucracy ahead of Jacob’s needs.

 

  Trimox