Monday, June 15, 2009

Jacob's report card

Jacob attended Ledbury Park Hebrew school on Tuesday afternoons after school during this past school year. He was placed in a classroom with typically-developing kids the same age as him. He had a great teacher and enjoyed coming to class each week.
Contrary to the ignorant statement by a director of education at a local Hebrew school who believes that exposing young children to kids like Jacob is "too traumatic", Jacob's report card illustrates a perfect example of how everyone can benefit from being around my incredible son.
Morah Hadassah, Jacob's teacher, summarized Jacob's year in the following report:
"Having Yacov in our class really added to the learning experience. His bright smile and big eyes always brought joy to our class. Yacov's favorite part of the day was davening, whenever we came across the word "Yacov", all the kids would point to him. Yacov would get so excited each time and everyone enjoyed watching his face light up. Yacov shows an interest in learning about Judaism. Having Yacov in our class was more beneficial for all of us - the students learned from him and loved reaching out and giving to him. When Yacov was absent or late, all his classmates would ask for him. The students love Yacov and looked forward to his coming each week. I truly enjoyed having Yacov in my class. Thank you for the experience."
And I thank you, Faigel and Hadassah, for giving Jacob this wonderful opportunity.

Tuesday, June 9, 2009

Jacob and his Princesses - from Canadian Jewish News - June 8 2009

Jacob and his princesses
By MARCY WHITE, Special to
Monday, 08 June 2009
“Have you lost your mind?” Megan shrieked into the phone after I told her about Jacob’s summer plans. My friend did not attempt to hide her disapproval, which was heightened when I told her three Orthodox Jewish teenagers would be responsible for his well-being.

Maybe I did lose it, I’m not sure. And I started doubting my parental abilities, again.

Jacob, my green-eyed son, has Pelizaeus-Merzbacher disease (PMD) a degenerative neurological disorder that prevents him from sitting by himself, walking, talking and swallowing. It does not, however, impair his ability to understand conversations or affect his amazing sense of humour.

As a parent of a child who cannot speak or move independently, is it irresponsible of me to send him to Camp Yaldei, an overnight camp, with teenage caregivers whose lifestyle and beliefs are different from mine?

The first time I noticed the figures in black was when I was a child going to the bagel factory with my parents on a Saturday night in Montreal. The bagels were hot; the car windows would fog up during our drive home and filled the interior with the aroma of warm bread and sesame seeds. I remember watching the men dressed in black suits and black hats during the hottest nights of July.

Following a short distance behind these shadowy figures were the women, wearing shirts with long sleeves and long skirts, pushing baby strollers, older children holding the hands of their younger siblings. I watched these people and wondered why they chose to have so many children, why the women agreed to wear wigs, and I thought how awful it must be for the children to be raised without television.

When Jacob was 16 months old, I hesitantly enrolled him at the Zareinu Educational Centre, a school for children with medical, physical and developmental challenges. I was reluctant to take him to the program for several reasons, one of which was that it was run by the Orthodox Jewish community. I feared Jacob would not be accepted because our family was not religious; we did not even belong to a synagogue.

At first, I was uncomfortable in that surrounding. It was difficult being in a group with eight babies and toddlers with various challenges, but it was even harder when I realized that Jacob’s issues were the most severe and complex in the class. Nobody commented when I wore jeans to class instead of the long skirts preferred by the other mothers. When Jacob was engaged with a therapist, I had time to chat with the others. I learned a lot about their religious beliefs, and I started to realize how misinformed I was.

A few years later, I saw a flyer for a weekly program for kids like Jacob, children with special needs. Yedidus, which loosely translated from Hebrew means “friendship,” was held at Bais Yaakov High School, an Orthodox school for girls. I considered sending Jacob but was concerned that the lack of adult supervision in the program would expose my son to danger. My friends, Megan included, ardently supported my decision. They convinced me that I should not leave my defenceless little boy in the care of girls who some would consider children themselves.

The following year, when Jacob was four years old and I was desperate to find an activity for on the weekends, I enrolled him in Yedidus. The group was organized by girls dressed in long, dark skirts, their hair styled in identical ponytails. They were kids in grades 10 through 12 and ran the program every Sunday morning when most teenagers are still sleeping, tired from a night out partying with their friends.

This religious community gives their children more responsibilities at an earlier age than those who lead a secular life. They marry younger, have children younger and are taught to be charitable, financially as well as with their time, at a much younger age. A 16-year-old in the Orthodox community is much more responsible and more interested in helping a neighbour than a typical teen, who is more concerned with the hottest music and the latest trends.

Some of the most wonderful examples of compassion and love are showered on Jacob when these kids play with him, talk to him and spin him in circles to make him laugh. These girls, who dress in skirts that fall four inches below their knees, help reinforce Jacob’s younger sisters’ belief that princesses only wear skirts.

Jacob is a fixture at Bais Yaakov on Sundays and is adored by almost all the students at the school. At 10:30 on Sunday mornings, as I push his wheelchair into the driveway of the school, Jacob starts squirming. His obvious excitement when he realizes where we are is restrained only by the seatbelt and foot straps that secure his body to his chair. The chorus of high-pitched “hi, Jacobs!” erupts as soon as the first teenager spots us. As we enter the building, a counsellor affectionately whisks Jacob out of my arms and plants kisses on his soft cheeks.

Sarah, Jacob’s counsellor during his first year at Yedidus and his favourite person in the world, has seen Jacob at his best and at his worst. Just mentioning her name makes him smile. Hearing her raspy voice on the telephone is enough to stop him from screaming regardless of the cause of his upset. She has witnessed Jacob’s chocking episodes, seizures, hives, general discomfort, and more than one episode of projectile vomiting. She is extremely capable with Jacob, and I often forget she is a teenager.

Some of my family and friends shake their heads in disbelief (or is it disapproval?) when they hear we have no qualms about entrusting Jacob’s well-being to this group of girls. They look surprised (or is it shocked?) that these kids know how to feed him through the tube in his stomach, an activity most adults in my life are too fearful to learn. I imagine they would consider me irresponsible (or is it crazy?) when they learn about his latest adventure, three weeks at an overnight camp in a neighbouring province.

But I won’t let their opinions sway my decision this time. I know Jacob will have an incredible experience surrounded by people who love him and enjoy making him happy. I know he will be safe. And I know that I am lucky to be part of this warm and generous community.

Marcy White lives in Toronto.

Mother Knows Best - from Exceptional Parent - May 6, 2009

From EP Global Communications

Mother Knows Best

Posted in: Regular Story
By Marcy White
May 6, 2009 - 7:22:06 AM

“I’ve never seen anything like this before” were the first words I remember a doctor stating the moment my son was born, as I listened to the donkey-like sound my son made. From where I was lying on the delivery table, it looked like his ribs were made of rubber and folded in half with each noisy inhalation. With every breath he took, his ribcage would collapse. Of course the doctor had never experienced this. We learned, five long, agonizing days later that it was because both of Jacob’s vocal cords were paralyzed, something so rare that the specialists at Sick Kids Hospital had not seen in over 15 years.

Until then, my only experience with doctors had been for routine check-ups and the occasional sore throat. Doctors had the answers; they diagnosed the problem and prescribed the remedy. And it usually worked. Not this time.

It wasn’t until 10 months after I heard those frightening words that Jacob was diagnosed with Pelizaeus-Merzbacher disease (PMD), a rare, neurodegenerative disease. I was at home playing with my son when the telephone rang. The doctor informed me that one of the many tests Jacob took came back positive. He had PMD. I had never heard of this disease and did not know what it meant. When I started asking questions, I was informed that there is no cure and no treatment available. According to the medical professional, our only option was to treat each new symptom as it appeared. I would not accept that this was the only option. My role as a mother was to keep my son happy, healthy, and safe. I would not sit back and wait for the disease to destroy Jacob’s body.

I lived my first year of motherhood as if I were in a bubble. While other new moms were taking their babies to music classes and various “mom and tot” programs, I was at home, isolated from the rest of the world. Because of his weak immune system, a simple cold was life-threatening for Jacob. I was not willing to risk infection by inviting other children into our home for visits or taking him for a walk in the nearby mall.

Instead, as I held him for two hours at a time for his feeding, his tiny head would get so hot it soaked through the layers of blankets that were between us. Without stopping, I was uttering the same two syllables in slow motion: Jaaaacobbbbb, Jaaaacobbbbb for hours. My biceps were burning from holding his little body as still as possible as any movement might cause him to vomit. This process was repeated every three hours. My clothes were drenched and stank from partially digested breast milk that was painfully pumped for 20 minutes, seven times a day, month after month.

Being a mother took on a new meaning for me. Yes, I held my son like any new mother, but it was different. Very different. Nothing like I thought it would be. I had to make sure I did not dislodge any of the tubes that helped him live. Yes, I fed my son like any new mother, but it was different. Instead of holding him to my breast or placing a bottle in his mouth, I had to connect him to a feeding system that dripped pumped breast milk into a tube that was inserted into his stomach, bypassing his mouth. And yes, eventually I was allowed to take him for walks in his stroller, but it was different. We walked in the halls of the hospital, stopping occasionally so I could place a suction tube in his mouth to help him breathe.

This was not the way I visualized motherhood. Seeing a healthy child was so painful for me, I felt like I would collapse in tears. When I saw a baby that was the same age as Jacob, I had to look away. I couldn’t help thinking my son should be sitting like that by now; he should be able to smile, too. When I listened to a mother complain about her child needing glasses, I wanted to scream at her and tell her to be thankful for having a child who could walk and talk.

As we were given the freedom to venture farther away from his room, I started gaining confidence in my ability to feed him by myself and was beginning to overcome my revulsion at threading a tube up his nose and down his throat for the deep suctioning he sometimes required. I was terrified. I can still feel my inexperienced hands trembling as I snaked the tube in his nose until it reached the point where it would turn, move down his throat and clear the thick mucous that was impeding his airway. I was not enjoying this part of motherhood. Not one bit.

Then, all of a sudden, I realized that I had changed. Somehow along the way, in the midst of all the feedings, appointments, and isolation, I seemed to have stopped saying that I couldn’t handle it. I stopped feeling like I was going to scream every time we were told that there was nothing anyone could do. I stopped shaking every time I had to suction Jacob, and I stopped apologizing to strangers in waiting rooms for Jacob’s screaming.

Eventually I stopped saying “I can’t handle it.” I don’t know exactly when, but at some point, I realized that I can, and I had to.

It is well known that mother-bears will stop at nothing to defend their cubs. And that was me, I realized. Perhaps my child had disabilities, but still, I was a mother-bear. I had found strength and courage from reserves located somewhere deep, deep inside me. I started to question the medical professionals. I began to realize they did not have answers, and even though many were reluctant to admit it, I learned they knew little about how to help Jacob. But as time passed, as I became more comfortable with the tiny fighter who is my son, I realized that I could not depend on the doctors for the answers. Jacob is my son. I know him better than a doctor who examines him for 10 minutes, despite the plethora of degrees hanging on his office wall.

The doctors were doing their best, but I was the expert. During one of our many hospital visits, a doctor told me that he wanted to surgically remove a piece of Jacob’s skin for analysis. I asked why. I wanted to know if the results would lead to a treatment or if it was simply to add more details to Jacob’s voluminous medical file. At another appointment, a specialist suggested a second MRI. I weighed the potential benefits against the risk of not being able to remove the breathing tube required for the anesthetic. As my confidence grew, so did my voice. I decided that any medical test or procedure that Jacob would undergo must have the potential benefit of bringing us closer to a treatment. I would not let him suffer for the sake of gathering additional information that would be useful only in the context of academic publications about rare disorders.

Some of the professionals I’ve encountered have labeled me a demanding parent; others call me difficult because I don’t blindly accept what they say. I know what I am. I am a mother-bear who will stop at nothing to protect her cub. I will stop at nothing to make sure Jacob has the happiest, healthiest, and safest life possible. Because frankly, that’s my job.

For more information about PMD, visit

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