Tuesday, November 23, 2010

Summary of a discussion about technology being used to help children communicate

The following was posted on BLOOM, Holland Bloorview Kids Rehabilitation Hospital's blog. It was written by Louise Kinross, the editor of BLOOM.

Thursday, November 18, 2010

Technology: Hype or hope?

I listened to a fascinating parent panel hosted at the Bloorview Research Symposium Tuesday. It was called Assistive Technology at the Dawn of the 21st Century: Juxtaposition of Hype, Reality and Hope. It was noted that 25,000 children in Ontario lack technology that would allow them to communicate or access a computer.

Holland Bloorview biomedical engineer Tom Chau (above left) moderated a discussion between four parents whose children have tried various communication technologies. The session was facilitated by students and staff in Tom’s Prism Lab. A focus of Tom’s lab is called ‘body talk’ research. This involves developing systems to detect physiologic signals – changes in brain waves, breathing patterns or heart rate – and translate them into electronic communication for kids who are non-verbal and immobile.

I wanted to share some of the parent comments with you.

What do you think about the hype around technology?

Karen Castelane: When I think about hype I think of the positives. It grabs the attention of the general public, stops them in their tracks and makes them take note. It motivates scientists to work in this field, and donors to donate, and gives hope to parents and therapists. It shows that this population has value and endorses the notion that communication is a right for all. When I think of negatives, hype can backfire when we don’t have quick results and the technology doesn’t live up to expectations.

Donna Cappelli: When my son Julian was younger people would say: “Isn’t there all this great technology? In five years you’ll hook up something to his brain and he can do anything.” But part of me has to accept how Julian is. If things don’t happen quickly, Julian gets frustrated. As parents, we have to take pause. I used to want to jump on everything but now I want to assess it.

How realistic is media coverage about assistive technology?

Donna Cappelli: I think media coverage is important. Everything comes down to money. Some of these technologies are being marketed for gaming because gaming makes money. If the media can show that the technology can be used in these other ways, it’s good.

Christopher Hopper: It’s helping you (scientists) stay motivated and engaged and pushing each other, whether it’s coverage in the popular press or scientific journals…Early on I thought maybe this technology will solve my son’s problems. Over time I learned that maybe there isn’t anything to solve. There aren’t any silver bullets out there, no magic wands. But there are different things that we can bring to bear. Through a tablet computer with a communication software, our son has gone from a rudimentary ability to communicate in sign to saying “I want juice or water” to…surfing on his iPad on YouTube.

Karen Castelane: My son Max is a normal boy trapped within a body. There is no existing technology to facilitate his communication. He can’t reliably and consistently get his body to move to hit a switch. He has basic yes and no responses. He can’t make his thoughts and needs and wants known. People who work with him need to have absolute patience. I think a learned helplessness sets in because we have to interpret for him. When we heard there was technology here that didn’t rely on physical movement…that hope bulb went off and we were totally committed. But four to five years in, we aren’t any further ahead than when we started. It’s frustrating. Our expectations are diminishing that Max will have access in his lifetime.

Donna Cappelli: Julian is able to communicate verbally, but his teachers and others who don’t know him can’t understand him. We had high expectations for technology but one of the difficulties we’ve had is to find something consistent for Julian. And on the other hand, when we do find something, Julian may reject it even though it’s appropriate. For example, he has single-switch access through a throat sensor that allows him to turn the pages of an online book. But the books from the library that he wants to read aren’t available online. So he has the access but nothing to use it with. So everything else has to catch up with this technology.

What are your dreams for your child?

Marcy White: To find out what Jacob’s dreams are. He’s trying to tell us something. If I had to choose one thing – he doesn’t walk and can’t hold his head up and is tube-fed. But if had to choose one thing, I’d say it would be to be able to communicate. We recently began using an iPod and I’m able to see in a very short period of time very appropriate use by him. I want to find a way to open him up because I know he has a lot to say.

Christopher Hopper: My dream is that he will grow up to be happy and fulfilled. Through assistive technology, Ben’s life has changed from black to white. I have the same dream for all children who are locked in a box. Being able to express choice, preference, love – it’s universal and it is a right.

Photo by William Suarez

Wednesday, November 3, 2010

Published in Bloom Blog (from Holland Bloorview Rehab Children's Hospital)

Wednesday, November 3, 2010

A dentist with a different approach

A dentist with a different approach
By Marcy White (above with Jacob)

I took my eight-year-old son to the dentist. His appointment was the last one of the day, at 3:30. From the moment I woke up, I felt a ball of dread bouncing around in my stomach.

Taking Jacob to any appointment is an ordeal. Physically, it is difficult for me to carry him into the car. There is a lot to remember to bring with us, including bibs, a change of clothing, diapers and – depending on the time of day – pre-measured medication loaded into syringes, his food and his feeding pump. Emotionally, medical appointments are challenging because Jacob hates being examined. He yells, his only way to protest, for the entire duration of the meeting.

As much as I tried to put the day’s consultation out of my mind, it kept popping back into my consciousness and I imagined the sound of Jacob's angry screams reverberating in my ears.

His school bus arrived home at the usual time, 3:10. I immediately placed him into his car seat and clumsily heaved his 100+-pound wheelchair into the back of my van. During the 15-minute car ride, I told him where we were headed and reminded him that he was a big boy and didn't need to be scared.

I explained to Jacob that the reason we were going to a new dentist is because this is the dentist his sisters go to. Sierra and Jamie really like him and we thought Jacob would like him too.

For a child who’s fed by a tube inserted directly into his stomach, one would think that dentist visits were not necessary. Ironically, that is not the case because the act of chewing cleans teeth, in much the same way as a toothbrush does. Because Jacob doesn’t chew, plaque accumulates in his mouth at a much faster rate and he needs a dental exam every four months.

Until that day, Jacob had always seen an experienced dentist, a professional who rarely spoke directly to him. My son’s typical behavioural pattern was to start screaming uncontrollably the second his wheels crossed the threshold of the exam room.

Jacob's screams are incessant. They leave him soaked in sweat – as if he has just emerged from a shower. He chokes during the appointment because he cannot swallow all the secretions that his yelling causes. In short, the dentist visit is torturous for all involved, but it's hellish for my son.

Sadly, most of the medical professionals we've encountered over the course of Jacob's eight years have had virtually no social interaction with him. I cringe each time the doctors ignore my son – the patient – and speak only to me. When I inform them that Jacob understands our conversation, they still don’t interact with him. They often begin their examination without asking Jacob’s permission to touch him or explaining what they will do. I didn’t expect today to be any different.

As we entered the small, non-air-conditioned office we were told that the dentist would see us shortly. I wheeled Jacob into the waiting room and banged into a chair along the way because the aisle was not wide enough for Jake's wheels to pass easily. I sat down next to my son and reminded him about what would happen during the appointment. A few times his mouth contorted into the saddest frown that made me want to cry, but Jacob was able to compose himself. He was trying to be brave.

The room was hot and stuffy and I worried that the temperature alone would upset him. A friendly hygienist came up to us, crouched down and told Jacob that it wouldn't be much longer until it was his turn. Jacob looked at her and listened while she spoke to him. I can’t remember the last time someone at a doctor’s appointment thought to bend down and speak directly to my son. The simple act of conversing with Jacob, at his eye level, was enough to make me notice that so far this appointment was different from most of the other ones we've been to.

A short while later, the dentist, a tall, lanky man with a big smile, walked into the room and promptly shook Jacob's hand and said: “Hi Jacob, my name is Ed.” Instead of breaking into an ear-piercing shriek at the sight of this stranger, Jacob lifted his head to look at the newcomer. He was curious and willing to let this person speak to him. Ed sat down on his stool and explained, to Jacob, what he wanted to do during the appointment. He then asked Jacob if it was okay with him. Treating my son like a person was all it took for Jacob to listen and not scream. When it came time for the actual exam, my son was calm and co-operative.

My heart was racing; I was amazed by Jacob’s behaviour. I couldn’t believe this was the same kid whose screams are legendary at the hospital where we attend most of our appointments. I was so proud of my son and felt like giving the dentist a huge hug. I tried explaining how dramatically different Jake behaved and how talking directly to him made such a difference. I don’t think Ed fully understood the magnitude of this event and how it altered things for us.

Later that night, when I replayed the afternoon in my head, I felt a heavy sadness in my chest. I realized that during all the previous appointments Jacob was probably screaming for someone to explain what they wanted from him. It was terribly distressing to me that it took eight years to find someone who was willing to look past Jacob’s physical impairments to see the person in the wheelchair. I imagined how different the past eight years would have been if the doctors who had ignored my son had treated the whole person he is – and not just a body part.

Since that momentous day, Jacob and I have changed. At the start of medical appointments, I tell the professional that Jacob does not like being examined and doctors scare him. But if they speak to him and explain what will happen, he might be more co-operative. So far, it’s worked. Appointments are still physically difficult, but they are not as terrible as they once were.

And if you need a dentist, I can give you the number of a great one.

Monday, August 30, 2010

Thank you staff of Camp Yaldei, July 2010

This letter is written for everyone who was involved in Jacob's care at Camp Yaldei this summer. This includes his three counselors, two rotators, medical people, camp directors, the girls who formed a human chain to prevent our car from driving away and everyone else who helped him have such a super time:

When our van pulled up at camp on June 29, I saw a bunch of counselors gathered on the porch of the cabin. We stopped our car and I got out. I opened the side door and started unbuckling Jacob's car seat. At that moment, someone from the porch noticed who was in the car and yelled “Jacob's here”. The next thing I knew, there was a swarm of orange sweatshirts around Jacob and my son was yanked out of my arms by an excited staff member and whisked away.

Later, when his medications were unpacked and I finished reviewing his feeding and medical schedule with Mr. Friedman and the nurse, I went looking for my son. I found him lying on the trampoline with Sarah-Yitti. They were bouncing, singing and laughing together.

After we said goodbye, he went right back to his game and I heard his laughter as I walked away.

People have asked me if it was hard leaving Jacob at camp and they are surprised when I tell them “no, it was actually quite easy”.

Jacob clearly has medical issues that can be, and did prove to be, challenging and complex. As his mother, I could have said that I wasn't comfortable sending my son so far away and keep him at home, under my watchful eye. But I didn't. I chose to allow my son to experience what most kids love, and what he would have undoubtedly experienced had he not been born with PMD – going to sleep-away camp. I had to weigh the risks against the advantages.

During the four weeks he was away, I received a series of text messages from Bracha every night telling me about Jacob's day, followed by photographs of Jacob, alone and with others. In each picture Jacob had the most enormous smile. It was clear that he was having fun. And from the tone of her messages, it was evident that his counselors were too.

Jacob's unexpected seizure caught everyone off guard, including me. And it scared his caregivers. We debated bringing him home but Rabbi Whitman told me that as long as I was comfortable with him staying, and provided that Jake’s doctors concurred, the camp was willing to keep him in their care.

Although I am not fully aware of the lengths people went to in order for Jacob to attend camp, I do know that there were several counselors who came up specifically to help care for my son. I am extremely grateful and humbled by the generosity of these caring girls. And because of his medical situation, he required a disproportionate amount of the medical staffs’ time and attention. But all these people gave of themselves and all they wanted in return was to see Jacob’s smile and hear his contagious laugh.

The purpose of Camp Yaldei, from what I understand, is to provide Jewish children with an overnight camp experience that they would otherwise be unable to have. Jacob had the ultimate camp experience: he went swimming, played basketball, bounced on the trampoline and rode in a motor boat. But most importantly, he made a lot of friends and had a fabulous time.

Thank you to everyone who helped make his experience so special.

Sunday, July 18, 2010

Tuesday, July 6, 2010

Facts & Arguments Essay
My disabled son's first time at camp
(Original title: Jacob's Magical Summer)

From Monday's Globe and Mail Published on Monday, Jun. 21, 2010 12:00AM EDT Last updated on Monday, Jun. 21, 2010 5:22PM EDT

The decision was made. Part of me was terrified. During the week prior to Jacob’s departure, with all his clothes scattered in piles on his bed and across the floor, I packed for my seven-year-old son’s coming adventure.

To observers, I did all the things necessary to ensure his readiness for overnight camp. There were T-shirts and shorts, long-sleeved tops and pants, bathing suits and pyjamas in his duffel bag.

It was a typical precamp scene, one that many people were enacting at the same time during the last few weeks of June. But this scenario was different from that of our neighbours. In addition to his blue bag stuffed with clothes and bedding, I methodically packed a second bag with syringes, feeding tubes and various medications that Jake needs every four hours around the clock.

Jacob has Pelizaeus-Merzbacher disease (PMD), a neurodegenerative disorder that prevents him from walking, talking or sitting by himself. He is fed by a tube surgically implanted into his stomach. Although his physical abilities are severely limited, he understands what is said to and around him and he has an incredible sense of humour.

When asked by friends if I was worried about sending Jacob away for three weeks, I emphatically told them that he would be well cared for and I was confident this would be a great experience for him. I ignored the queasiness in the pit of my stomach that surfaced every time. Was sending my disabled child, whose needs are complex and constant, to camp the action of a responsible parent?

Jacob, my child with huge green eyes that sparkle when he smiles, has an ability to make people fall in love with him. There is something intangible that draws people to him and makes them want to be near him, help him and laugh with him.

Jacob’s people-magnet skill was first observed as an infant while he was in the hospital for a prolonged stay following his birth. The nurses would argue over who would be fortunate enough to have him on their charge list for the day. Our morning would begin with the lucky winner entering his room with a smile, ready to start his daily routine of medication administration.

Jacob’s charm was in overdrive when he joined a weekend activity group led by teenaged girls at a nearby high school. Jacob’s princesses, as his sisters referred to them, flocked to him and playfully fought over who would spend time with him each week.

Belle, Jacob’s favourite princess, convinced me to send Jacob to a camp for children with special needs. She selected two other princesses to accompany them. The three girls were breathless with excitement as they unveiled their plan – Belle would be with him during the day and the other two would be responsible for his overnight care.

We arrived at camp in the evening, two minutes before a thunderstorm. As the car slowed to a stop, my heart was beating quickly and my breath was shallow. It was really happening – he was going to stay at camp without me for several weeks.

An hour later, Jacob was sleeping soundly in what was affectionately labelled “Jacob’s Palace,” his room with handmade signs and pictures taped on the walls.

Unlike my son, I was not relaxed. Not at all. I was unpacking his medical paraphernalia and anxiously trying to share as much information as possible regarding his care with the camp nurse, a woman exhausted from a long first day of camp. The refrigerator, necessary for Jacob’s food and medications, was not in the prearranged spot. We were unable to locate electrical sockets in his room to plug in his nebulizer, a device needed to administer one of his medications.

After some running around on the part of the counsellors, things started coming together. With a few final reassurances from the camp directors that he would be safe, I reluctantly left my little boy in the able care of his doting princesses.

Daily reports from Belle were consistently positive: “Jacob had fun boating today.” “Your son is dangerously cute and had an awesome time on the trampoline.” And my favourite: “He’s my best friend in the whole world!”

Not content to rely solely on Belle’s updates, I visited Jacob partway through his camp session. As I walked across the lawn to the building where Jacob was, several counsellors came up to me and gushed about how much they love my son and how much fun they have playing with him.

Jacob was wheeled to me flanked by five caring counsellors and his new friend, Nosson, the nine-year-old son of the camp director who was always at Jacob’s side. As soon as I saw Jake, his huge gap-toothed smile was all the convincing I needed to know that he was in his element.

We toured the camp and met his princesses, whose number had grown exponentially. Jacob looked tanned, healthy and ecstatic. I was so proud of my little guy, and all the tension I had inside my gut evaporated.

He was excited to see me, as evidenced by the wet, sloppy kisses he kept giving me, but he was not ready to come home. As I was leaving, I asked if he wanted to come with me, to which he quickly replied, in his way, “No!” When I asked if he wanted to stay with his princesses, he didn't hesitate and immediately nodded his head “Yes.” After a few more hugs and kisses, I drove away with a sense of calm that had eluded me since the night we brought him to camp.

This month, as the school year winds down, Jacob’s clothes and medications are once again ready to be packed. Remembering his beaming smile and high-pitched squeal when I visited him last summer, I have no doubt that I am doing the right thing for him. I know that Jacob will, once again, have the time of his life. What more can I want for my son?

Thursday, June 24, 2010

Jacob's report card 2010

Jacob attended Ledbury Park Hebrew School for the second year in a row. He was in a class with kids his own age and had a great time. Each week, when the school bus would drop him off at home at 3:15, we would put him in the car and head up to the program for his after-school Hebrew program. When he started in the class last year, he often wouldn't make it to the end of the 2 hour session. But this year, he managed to stay alert and interested for the entire time. I'm not sure if it was the material that he adored, or simply being around kids his own age who would talk to him and be interested in what he was doing.

A few days ago, his report card came in the mail and it made me smile. The Comments section read as follows:

It was an honor to have Yaakov in my class this year. Yaakov shows a tremendous desire to learn and loves the kids in the class almost as much as they love him! Continuously throughout the day, the kids come over to Yaakov to look at his work, give him different things, or just to ask him different questions. Yaakov's two favorite times of the day are davening and music. During davening, the smile Yaakov gets on his face when all the children point to him when we sing his name in our song is unforgettable. The days that Yaakov was not there on time for davening, the children requested that we sing the song again once he arrived. Yaakov should be proud of what he has accomplished! It has been a pleasure teaching you and I will miss having you in my class.

He's already signed up for next year!

Saturday, May 29, 2010

"Can I have some alone time with Jacob?"

Watching friends' children interact with their siblings made me realize that my daughters don't have the same relationship with their brother that most kids have with their brothers or sisters. That fact wasn't really surprising to me but it did make me sad. Jacob's sisters don't run to hug him when he gets home from school and they have to be coaxed to say good morning when he's wheeled out of his bedroom at the start of the day.

But things are starting to change. It may be that Sierra and Jamie are getting older, or maybe because they see how many 'princesses' love spending time with him, or they are simply learning how to 'play' with him.

A few nights ago, as I was getting her ready for bed, Sierra looked at me and asked "can I have some alone time with Jacob?" She wanted to play with him by herself, something she has never done before. She asked that she be the only one in his room with him and wanted me to wait in the hall. She requested 4 minutes with him. My heart nearly burst with happiness as she walked into his room and asked him if she could play with him by herself. He smiled and I left the room.

Not to be outdone by her sister, Jamie asked for some time with him as well. A short while later, Jamie was running down the hall, pushing Jacob in his chair and making him squeal in delight. He was loving their games and his sisters were enjoying playing with their brother.

My daughters may not have the same type of relationship with their older brother that most kids have with their older siblings but they are developing a special bond with Jacob that was evident when he saw them enter his classroom at school and laughed so loudly that everyone in the room heard him.

Monday, May 24, 2010

Jacob's birthday parties

Jacob is 8 and had many great parties to celebrate.

His sisters, Jamie and Sierra, spent an afternoon with him in his class at school. Together they frosted cupcakes and he watched them eat their work. Sierra and Jamie were given the responsibility of handing out the carefully packaged loot bags to each child in the class. Jacob loves when his sisters join him at school and his squeals of excitement are heard down the hall when he sees them.

We had a family party at our home so that his grandparents, aunts, uncles and cousins could celebrate with him. For the first time in his 8 years, he seemed to enjoy a family get-together. Most people took turns reading to him, talking to him and playing with him. It was the first time he was comfortable at a large family get together and we loved watching him so happy.

The best part of his birthday celebration was the party with his friends. Unlike most eight year old boys, Jacob doesn't have many friends his own age. He has tons of friends but they are mostly teenage girls, affectionately referred to as Jacob's princesses since they always wear long skirts. On Sunday night, the weekend before his birthday, we invited his friends over to celebrate. He was the center of attention (as always!) and the girls kept jostling each other to hold and talk with Jake. He was loving every minute of it.

And this weekend, we had the fourth party for Jacob. It was a joint birthday celebration for Jacob and his girlfriend of almost 3 years, Taryn. Jacob is 10 days older than Taryn so they get together in between their birthdays each year. As they do every time they get together, Taryn kissed Jacob's eyeballs and he laughed.

Without a doubt, it was his best birthday ever!

Saturday, April 3, 2010

Jacob and His Sisters, Globe and Mail April 1 2010

Marcy White
From Thursday's Globe and Mail Published on Wednesday, Mar. 31, 2010 6:02PM EDT Last updated
on Wednesday, Mar. 31, 2010 6:07PM EDT
Jacob’s five-year-old twin sisters know their big brother can’t speak. They know he eats by a tube
surgically implanted into his stomach and they know he can’t move by himself. They also know he
understands what they say and he loves to watch them play.
Jamie, the lankier twin with curly hair and blueberry eyes, knows how to make her seven-year-old
brother laugh. Her off-tune, high-pitched singing always results in an ear-to-ear grin from her brother’s
gap-toothed mouth. The more he laughs, the more Jamie chants, and the more she chants, the more he
laughs. They enjoy their game, and I love watching every second of their interaction.
The decision to have more children after Jacob was diagnosed with Pelizaeus-Merzbacher disease, a
severe neurodegenerative disorder, was colossal. Was it selfish of me to bring a healthy child into a
family with a child who required constant care?
During the first few years of Jacob’s life, I lived as though I was in a bubble. Most days were spent at
home, fearful of exposing Jacob to simple germs that could be life threatening for his weak immune
system. My friends were welcome in my house, but their children were not. Aside from the unknown
viruses that kids harbour, it was too agonizing for me to watch healthy kids run, speak and eat,
activities Jacob was unable to master.
When Jacob was younger, life was excruciating. My son was in constant pain and each ear-piercing
scream was like a red-hot dagger slicing through my heart. There were no hints that he would ever be
comfortable and happy.
When I started exploring the idea of a sibling for Jacob, I thought it would be terrific for me. It would
allow me to re-enter the “normal” world and experience the joys of parenthood as a “typical” parent, a
mother who was fortunate enough to teach her child how to count to 10, ride a bicycle and hold a
crayon. My parenting experience had consisted mostly of medication administration, physical therapy
and frequent doctors’ appointments. It was easy to see that a healthy child would bring some much-
wanted normalcy into my life.
But late at night, when Jacob was in the care of a night nurse because he cannot be left alone, I wrestled
over what to do. What impact would having a disabled older brother have on a younger sibling? Would
a sibling detract from the attention Jacob needed?
I reasoned that Jake would have the opportunity to interact with another child, something he rarely did
but seemed to enjoy. The stories I heard from others led me to believe that Jacob’s hypothetical sister or
brother would not be negatively affected by growing up in our family. With proper guidance, he or she
had a tremendous opportunity to thrive and become a special person because of being his sibling.
When Jake was 21⁄2, he became a big brother to healthy twin sisters. The twins were a welcome
surprise, although twins aren’t rare in our families.
As infants , Sierra and Jamie were a handful in the way that all babies are, but it was so much easier
parenting these two girls than it was caring for their brother at the same age. I knew that if the girls
were hungry they would eat, if they were tired they would sleep, and if they cried they were not at risk
of choking. They never needed me to thread a suction tube down their throat to clear their airways.
It was evident that Sierra and Jamie were a welcome addition to our family. The increased activity in
our house pleased Jacob. He smiled when we placed him on the sofa with a sister on either side of him.
His eyes sparkled when he was positioned in the front of the double stroller listening to his little sisters’
babble, squished in the seat behind him.
As I watched my girls explore their surroundings, I had a mix of emotions running through me. I
wavered between awe at the ease with which Sierra and Jamie knew how to hold a rattle or turn the
page in a book, and soul-numbing sorrow knowing that Jacob was unable to hold his beloved guitar by
The girls were early talkers, and curious. As Sierra was nearing her third birthday, she asked me why
Jacob can’t walk. Her innocent question scared me. I knew that at some point they would notice that
Jacob was different from their friends’ older brothers. It was important to me that the girls feel
comfortable asking questions about their brother, and I was determined to give them honest and age-
appropriate answers that would help them understand Jacob but not scare them.
She was satisfied with my response that his legs don’t work the same way hers do, but I knew this
question would shortly be followed by other, more challenging ones.
When Sierra and Jamie blew out the candles on their Dora the Explorer birthday cake on their third
birthday, Sierra pushed her hair away from her face and asked if I could put some cake in Jacob’s
feeding tube so he could have some too. She knew her brother does not eat the same way she does, but
she wanted him to enjoy something she loves. As my eyes filled with tears, I told her that I was very
proud of her attempt to share her cake with her brother.
My family is not typical. Jacob still requires constant care, but making him an older brother was the
right decision for us. Jake’s younger sisters are happy, smart and curious girls. They have a special
brother with a contagious laugh that can be heard any time they try to tickle him.
Marcy White lives in Toronto.

Friday, March 12, 2010

The Sleepover

Friday, March 12, 2010

Our guest blog today is about a big event in every kid’s life – the first sleepover! It’s written by Marcy White, mom to Jacob Trossman, 7 (above, with his friend Batsheva). Batsheva also attends overnight summer camp with Jacob. You can read about Marcy’s work to raise research funds for Jacob’s rare myelin disorder at www.curepmd.com. Thanks Marcy! Louise

The sleepover
By Marcy White

My son Jacob, 7, had his first sleepover on the weekend. It was at a girl's house. Her parents were away for the weekend. And he had a great time.

Jake is not like most boys his age and can't do what most kids do. My little boy has Pelizaeus-Merzbacher disease (PMD), a disorder that affects all the nerves in his body. He can’t sit by himself, he can't speak and he can't use his hands to push a toy truck. But he understands conversations and has a wicked sense of humour. Physically, he is severely challenged. Cognitively, his sharp mind is trapped inside a body that doesn't work the way it should.

My young son with a smile that lights up his entire face has few friends his own age. Taryn, a girl 10 days his junior, is Jake's girlfriend. This incredible blond-haired girl with deep dimples on both cheeks donates all her tooth fairy money to PMD research so she can help find a cure for Jake's disease. Jake cracks up with laughter when she leans over to kiss his eyeballs. Another friend is Harry, a little boy who is seven-years-old and in the same class at school. Like Jacob, Harry is in a wheelchair and cannot speak. When both boys are placed on a mat on the floor, they hold hands and laugh together. When Harry's name is mentioned at home, Jacob grins.

But the majority of Jacob's friends are older girls—teenage girls—affectionately known as Jacob's Princesses because they always wear the long skirts favoured by orthodox Jewish females. These girls take turns holding my son and dancing with him. They complain about “Jacob withdrawal” if they don't see him for a week. So when one of them invited him over for a sleepover at her house, I immediately said yes.

Late Friday afternoon, with Jake's clothes, medications and liquid nutrition packed, his wheelchair and IV pole crammed in the back of the van, we set off for his latest adventure. During the car ride to his friend's house, I explained to my son that he was going to stay there for Shabbat (the Jewish Sabbath which runs from sundown Friday until after sundown on Saturday) and I would come pick him up the following evening. The smile on his face assured me that he was excited about this new experience. As I carried him into Batsheva's house, her warm embrace welcomed Jacob and allowed me to leave without a murmur of protest from my son.

Back at home, my house seemed different. It was quieter without Jacob. With both my daughters in bed by eight o’clock I realized that this was the first time since Jacob’s birth that I would be able to lounge around in my pajamas before going to bed. Emily, the night nurse, would not be arriving at 11:30 to tend to Jake's needs during the night. This would be the first time in almost eight years that my entire household was asleep at the same time. It was a normal situation for most families, but felt strange and unsettling to me.

The next morning was surreal. My typical Saturday craziness begins at 9 a.m. when Emily leaves. Within minutes, Jake is screaming and everyone is hustled into the car for a few hours of driving and time-wasting errands to Home Depot or Wal-Mart, until it is time for all the kids' swimming lessons. This particular Saturday was more serene. We stayed in bed and watched cartoons on television until mid-morning and gradually made our way to the pool in time for the lesson. It was a pleasant way to start the weekend.

But again, it didn't feel right. Jacob wasn't with us.

As the day went on, I noticed how quiet my house was. I wasn't glued to the clock to make sure I didn't miss a medication dose or run out of bibs for my chronic drooler. There was an element of tranquility in my home, a word that isn't usually used to describe our abode. But the calmer my life became, the more agitated I felt.

My mind kept drifting to thoughts of my son. I wondered if Jakey was having fun and what he was doing. Because he was celebrating Shabbat with his friends and the Sabbath rules dictate that they could not use the telephone, I was unable to get an update. As much as I wanted to, I could not get in touch with him, short of showing up unannounced at his friend's house. I reassured myself that he was in capable hands and if something terrible happened, surely I would be notified. I felt helpless but was trying to be strong so Jacob could have this incredible experience.

At 7 p.m. I went to pick Jacob up from his adventure. As I hurried up the front stairs and waited at the door, my heart beat hard with apprehension. Questions were swarming around my brain: Was he able to sleep in a new bed? Did he wake up scared and unsure of where he was? How was his day?

When the door opened and I saw my gap-toothed son sitting in his wheelchair in the middle of the living room, my racing heart slowed. When I was close enough to ruffle his thick hair and give him a big hug, I knew that he’d had a wonderful time.

My son had a sleepover at a friend's house. He had a fantastic time and by all accounts did not miss his mom. I, on the other hand, missed him terribly. But despite my internal struggle with his absence, I know I did the right thing in letting him go. Jacob has many medical issues that make his life more challenging than most. But he deserves to have regular childhood experiences and I will do whatever I can to facilitate them. Now if I can figure out a way for him to try waterskiing...

Monday, March 1, 2010


We were invited to Yaffi's house for Purim - all 5 of us. And we went. All 5 of us.

This might not sound unusual for most families, but for us it was a rare occurrence (being invited for Purim was a first for us too, but that's another story). And the stress leading up to the dinner was not insignificant.

Although a bit shy at first, Jamie and Sierra were great. I was not worried about how they would act, I knew they would love being around so many princesses. All it took were a pair of gigantic lollipops and lots of girls, their age and older, in beautiful dresses and they were having a ball. They were too busy to sit at the table and eat dinner because there were so many girls to play with.

Jacob, on the other hand, was a different story. His behavior in unfamiliar surroundings can be cause for concern, to put it mildly. In fact, if there are a lot of strangers and noise, Jacob's behavior is quite predictable - he screams. He screams and screams until his hair is soaking wet, his face is red and everyone is extremely uncomfortable listening to his heartbreaking cries. Then we go home and those who stay behind breathe a sigh of relief at the welcome silence and feel sad that Jacob did not enjoy the event.

When Yaffi invited us to her house to join her family for Purim dinner, I accepted. It never occurred to me to leave Jacob at home, but I did wonder how I could best prepare him for the anxiety that usually accompanies him to parties.

I told Jacob about Yaffi's invitation and asked him if he wanted to go. He said yes. I decided to bring Leazel, one of Jacob's nurses, along in case he needed to go into a quiet room away from the commotion or if he wanted to go home early.

As we were getting everyone loaded into the car, he started crying. Within seconds Jacob's cries escalated into full blown wet-hair-red-face screams. But we carried on. He screamed the entire drive to her house. We stood outside her house for a full ten minutes waiting for Jake to calm down before descending on Yaffi and her family, even though we were already late.

Standing outside the door, waiting for it to open, I silently hoped the evening would go ok, and that Jacob would stop crying.

Yaffi opened the door, saw and heard Jacob, bent down and spoke to him the way she usually does - as a typical 7 year old. And he stopped screaming.

I don't know exactly what happened next, but while everyone was sitting at the table, Jacob was there too, at end with all the kids. Partway through the meal, with the girls playing with their new friends and the adults still enjoying the incredible and countless dishes placed along the large table, I noticed Jacob sitting next to Yaffi at the table with us. He was happy, as evidenced by the enormous grin on his face. At one point he was playing with the balloon he was holding, laughing every time it escaped his grip and floated to the ceiling. He actually joined us at the table. And he was having fun, even when the conversation wasn't directed at him. He was watching us, listening to the conversations and really enjoying being part of the festivities.

Every time I looked over at him and saw him sitting across the table from me, I felt so proud of him. I don't know what Yaffi said to him, or what it took to get him comfortable, but this was the first time he spent an extended period of time at the table with anyone. And he was surrounded by people he had never met before.

Later that night, when Jake was in his pajamas and ready for bed, I asked him if he had fun and he nodded his head yes. I told him how proud I was of him and that I was so happy we were able to have this wonderful experience together.

Purim is my new favorite holiday.