Difference vs deviance

Ben took this photo when we were walking on Blue Mountain in Collingwood the other weekend.

I thought these notes from a presentation inclusion author Cheryl Jorgensen sent me were food for thought (and I also get how referring to disability as simply a social construct minimizes the experience of parents raising children with significant disability and medical fragility).

Disability is a social construction, not a deficit located "within" a person. The degree to which disability/difference hinders a person's life is directly correlated with the level of accommodation in the environment for that person's differences and needs.

Disability is one kind of human difference: not deviance, not deficiency, not needing a cure, not needing charity or benevolence.

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To celebrate Zack!

We attended a lovely event at a farm in support of Zack's Dream Room at York Central Hospital today. Louise

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Gratitude

I'm grateful for some opportunities that I hope will result in a better school placement for Ben next year.

I sent information from a number of inclusion experts to our school board and trustee and the superintendent has agreed to a meeting in July to discuss whether Ben could be supported in a regular high school that has a unit for students who are deaf/hard of hearing (but typical academically -- and they are in the mainstream for some classes with interpreters). This is not where they would choose to place Ben, but I feel it is a better environment with more potential (and not a 45-minute drive from where we live).

Cheryl Joregensen, an inclusion consultant at the University of New Hampshire, has agreed to participate in the meeting by SKYPE!

Other good news. We were seen by a speech therapist at Holland Bloorview with the goal of getting Ben a better voice device and set-up of vocabulary. This is seen as critical to inclusion. We have never been able to find a reliable device that was intuitive and not clunky. The technology has always seemed archaic to me compared to everyday business software you'd use on your computer. It's so slow and difficult to navigate it's a disencentive to using.

And we are participating in Beta testing of WordQ -- a word prediction software -- on the iPad. Ben has used it before on a regular computer. It's helpful because it has speech feedback.

A retired teacher from Holland Bloorview is tutoring Ben in reading and I'm meeting with our local Kumon group because I've been doing some of the books that brother Kenold brings home with Ben.

Ben is going to overnight camp for four weeks this summer -- thanks to the generosity of a family member and a friend.

He's enjoying watching old Zoboomafu shows now that we have Netflix. Last night they featured a Duck-billed Dinosaur which he found hilarious.

I'd love to hear your good news! Louise

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Learning empathy by looking beyond disabilities

Check out this piece in the NY Times yesterday. Louise

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Learning to fly

Learning to Fly
By Meriah Nichols

Sometimes I wonder if parenting a child with a disability -- as a parent with a disability -- is as much about logistics and tools as anything else. That with the right, bright bits of click, it's no more nor less than anything else anyone else would experience.

Let me explain myself. I am deaf -- little "d" deaf. This means that I can hear but I have what is called 'cookie bite compressed hearing.' My hearing starts at 0 decibels (essentially what a grasshopper is said to hear), goes down to 70 or so decibels (moderate-severe loss), then back to 0. At 80 decibels things become too loud. It's like the giant blue hearing monster took a big bite out of my cookie then squashed it, that's what it is. Leaving me with the oddest hearing ever -- I might not hear you say hello but I can hear someone rustling plastic bags about a mile away.

I also went through the windshield of the car when I was 4, back when seat belts were a delightful accessory and car seats for children were probably an ungerminated idea from someone yet-to-be-born. My head was spectacularly torn open -- my face is criss-crossed with scars -- and shaken up.

Added to this little sundae of disability is my cherry of vision -- I am one notch under legally blind. I wore coke-bottle glasses of the variety that were so heavy that they left permanent grooves in my nose. You name it, I was called it at school. From the more exciting 'frankenstein's wife' to the rather mundane 'scarface' and altogether unoriginal 'four-eyes.' And everything, everything in between.

It took me about 30 years to get over it. To come to a place of not only acceptance of myself, but a place of pride. I am proud of who I am, who I have chosen to become. Of my life, thus far. I am of the opinion that my scars fit my face, or that my face fits them: either way, the point is, they belong together. My hearing (or lack of), is, I feel, a blessing not to be taken lightly in the wailing face of a tongue-wagging, tantrum-throwing howling toddler. How many parents have the option that I have, of turning OFF their child, staying calm and firm with them? Truly. It is a wondrous advantage.

Thirty years. And I was in a good place. Then they told me that my second child, my (unborn) daughter was going to have Down syndrome. That, somehow miraculously resolving the diffuse fetal hydrops that she had (right along with her heart holes), she was going to come with an extra chromosome. We were told she'd be a burden for life, one that we were encouraged to terminate.

In one swoop, rather like the feeling that a bucket of ice had been dumped over my head after I went through the windshield, my 30 years of growing to a good place was gone. Utterly, completely gone. I was back to being the little girl standing there on the playground, sobbing as someone eagerly seized his advantage in mercilessly teasing me. Back to that place of wondering what, as someone had later asked, could possibly be good about me when so much was wrong?

The choice to have the moxie to have Moxie was not lightly made. What cinched it was the sudden realization -- the gut knowledge, belief, whatever it is -- that all of our paths are precisely that. Our own. Mine was mine and is not Moxie's. Her way in life will be as she makes it. The pain and misery and depression and all the rest of it that I experienced is not hers, was never hers and will not be hers.
And so. My Moxie came, complete with her extra bit to love.

The biggest hurdle for me - the one of accepting her precisely as she is -- was jumped. As a parent with disabilities, I was left with, as I have said, the logistics of disability. How to hear her when I can't hear. How to check up on her. How to remember things like all of her appointments. How to stay awake when my narcoleptic bits get triggered because I am stressed out dealing with a stupid bureaucratic system. How to deal with the seemingly endless phone calls I need to make on her behalf...when I am deaf.

Perhaps parenting is a process, much like learning to fly. If you were born with -- or acquired -- a set of wings that fly differently from your flock, well, then you need to learn how to fly with what you have. And then when you look down and see that your little chick has wings that are also different from the flock, different from yours even -- then you need to figure out how best to guide and help your chickadee.

All the way, flying with the wings you have. All the way, loving your little one as best as you can.

After designing, implementing and spending the past 8 years managing an employment program for students with disabilities at UC Berkeley, Meriah Nichols is now a full-time Mom to two: Micah (3) and Moxie (1) in the San Francisco Bay Area. She also works part time in employment coaching, as a guest editor for the Assistive Technology Coalition. She tries to work on her urban homestead every day. She can be found on her blog at doozeedad.

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Happy Father's Day!

Check out the Terratrek all-terrain wheelchair we picked up for free from a man giving one away in Georgian Bay on the weekend.

Right now it's sized for a large adult, but hopefully we can get it modified. Ben needs it for overnight camp but we weren't able to source one anywhere.

D'Arcy googled it and came across an ad from a person who wanted to give one away!

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Freedom for my daughter






















I'm delighted to share another post with you from a parent member of Holland Bloorview's Family Advisory Committee. Louise


Freedom for my daughter

My daughter (above) is a fabulous, bright and fun little girl. She was born with athetoid cerebral palsy. She is affected in all limbs, as well as in her speech and overall control and balance. She will be six this summer.

Last year we began working with a doctor in a coaching role, to help coordinate our daughter’s therapies and organize our goals.

When she was four, she was seeing six different therapists and going to over 10 therapy sessions a week. At the same time, she was not making progress and anything new we wanted to try caused tension with the therapists we had.

With the help of the coaching doctor, we got focused and took control of the therapy program, working on measurable goals that were a priority for us and having all our therapists work together to create a plan for our daughter. There was improvement almost immediately – in our daughter’s strength and abilities as well as in our stress levels. It was and continues to be a challenge to get our therapists to communicate effectively, but it's worth the effort.

Last summer the doctor encouraged us to try it a water exercise program she had developed. We had never tried anything like this and were excited to try something new. We got our daughter a hydrofit wet vest -- a unique wet suit style floatation vest designed for athletes, so that she could do deep-water jogging three times a week. We hoped to improve her balance, encourage reciprocal motion in her legs, and build up strength and stamina.

The improvement was phenomenal. Our daughter had been taking swimming lessons for a year but it was a challenge because she had trouble controlling her body in the water. It seemed that when she went into water she became more spastic and had more uncontrolled movements than on land. Generally, she can sit well on a chair or bench, but when the swim instructors wanted her to sit on a table in the water with the other kids, she couldn’t keep herself up. Floats and glides were difficult even with a lot of assistance.

The wet vest changed all that. My daughter could sit easily on the table and float and glide on her back with minimal assistance. Needless to say, her swim instructor was pleased. The vest provided my daughter with just the right amount of input and floatation. It was so much better than a typical life jacket, which would just tip her right over.

When we first started with water jogging, my daughter had trouble keeping herself upright, even with the vest. It was a new experience and it took time for her to learn this new skill. She quickly progressed to being able to keep herself upright for two to five seconds before falling over to the side or onto her back. With more and more practice we saw this time improve. After three weeks she was able to stay upright and jog for 30 seconds consistently. After four weeks she could do a minute. By the end of the summer, she could jog on her own, easily, for more than 10 minutes at a time. I'm a good swimmer and 10 minutes of treading water is tiring for me, so I was impressed. Not only could she tread for an extended period of time, but she was doing it totally on her own, she had good form, was in control of her body and was having fun.

The improvement in my daughter’s stamina and strength was noticeable out of the pool too. Even though she had lots of therapy, before last summer she didn’t really have any cardiovascular exercise. She couldn’t run and play like other kids and tired easily. This is no longer the case. Her strength and energy improved greatly. This allowed her to walk longer distances in her walker and translated into an improvement in speech volume.

All that aside, the most amazing thing that came out of the water program was independence for my daughter. She is so physically limited that before last summer, she was never without an adult to hold or support her. Now, she has unrestricted movement in the water. She can swim on her own. We can swim together as a family, for fitness or fun. She began to wake up every morning asking to go swimming or saying that she had a wonderful dream that she swam to one place or another with one of her friends. I will never forget the look on her face the first time she jogged from one end of the pool to the other on her own.

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To Kill a Mockingbird -- revisited

When I first visited the segregated high school my son is in, I was told: There will be no reading of To Kill a Mockingbird in this school. The focus would be on practical skills, the guidance counsellor said, like reading road signs.

I don't know why, but it bothered me that I was being told my son would never read To Kill a Mockingbird.

Oddly, I was an English major and I myself had never read To Kill a Mockingbird.

Still, it irked me when I was told this was a standard Grade 9 text and my son would never read it. I don't want anyone telling me that my son will "never" do anything.

So imagine my surprise (and delight), when I wrote to a researcher in inclusion last week asking for practical examples of how curriculum can be adapted for different abilities and one of the examples she sent was To Kill a Mockingbird!

Cheryl Jorgensen is a professor in the Institute on Disability at the University of New Hampshire, and has co-authored a number of books on inclusion, including Beyond The Access Model.

I wrote to Cheryl after visiting a deaf/hard of hearing program in a regular high school here in Toronto. The students have some classes in their unit and are mainstreamed with interpreters into regular classes as well. Most of these kids are typical kids who happen to be deaf and are working at grade level or a couple of grades below. I wanted to know if there was any practical way that my son might be able to be served at this school.

My question to Cheryl was: How do you modify for a child nine grades below in a subject? In a way that meets their learning needs and doesn't ostracize them?

One of the resources Cheryl sent me was a powerpoint about adapting high school books, and one of the books included was To Kill a Mockingbird.

The first page includes the large image above and this text:

This is Scout Finch. Scout is a nickname. The story of To Kill a Mockingbird is told through her eyes.

Scout’s mom is dead so she lives with her dad and her brother in a small town called Maycomb, Alabama.

The presentation goes on to introduce each of the main characters with an image and simple description, and then talks about the four major lessons Scout learns. For example: 'Don't judge until you put yourself in another's shoes.'

This adaptation was done by using a website that analyzes content of books for older students. Here's their plot description of To Kill a Mockingbird.

There are 100s of books on this site and they all have plot summaries which can be used to quickly adapt books.

In responding to my question about how to modify a Grade 9 book to a Grade 2 level, Cheryl offered this advice:

All text needs to be provided to all students at their comprehension reading level. This is a law in the U.S. but perhaps not in Canada. Ideas:

Have the student listen to the text using a screen reader.
Have another student rewrite the text at the student's level.
Have a teacher re-write the text at the student's level.
Find an easier version of the same text. There are even comic books available for high school literature like Romeo and Juliet.

Providing different materials and individualized supports does not have to be ostracizing if teachers communicate to their students that 'fair' does not necessarily mean 'the same.' This doesn't even have to do specifically with inclusion of students with disabilities but is a principle of universal design for learning and differentiated instruction. All students need access to print materials/knowledge at the level of their reading and comprehension and there should be different options for students to 'show what they know.'

I hope to provide you with more resources that show how students of all abilities can access the regular curriculum over the coming days. Louise

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A short review of a dad's memoir

This is a thoughtful dad's perspective on what it's like to have a son with autism. The dad is Joel Yanofsky, a Montreal author and book reviewer. In addition to capturing the joys and frustrations of his relationship with son Jonah, we get a look at the impact of autism on a marriage. "Tantrums had become routine -- for Jonah and me," Joel writes. "He'd cry and rage, and I'd explode. I can't count the number of times I was exiled to the basement." "If you have to brood, brood there," (wife) Cynthia would say.

We follow Cynthia and Joel to counselling and through years of applied behavioural therapy. Joel gives us his take on a number of memoirs about parenting a child with autism, and interviews well-known writers and bloggers, including Estée Klar of The Joy of Autism and Emily Perl Kingsley, who wrote Welcome to Holland.

I found this book moving, funny, candid and ultimately hopeful. Louise 

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When people put social norms before humanity

I work with a lovely social worker named Laura. Her husband Keith used to work at the Globe and Mail, with my husband D'Arcy. Keith and Laura have two amazing kids: Connor and Bryson. This weekend the family had a painful experience during what should have been a happy occasion: a night out at a new restaurant.

During their meal, a staff person came by to ask the parents to keep their son Bryson quiet. Apparently, patrons at the other tables were complaining. Bryson, 5, has a rare genetic disorder and communicates through "songful, deep-throated vocalizations," says his dad.

"We were flabbergasted," writes Keith on his blog. "We pointed out what we thought was obvious – that Bryson has severe mental and physical disabilities and that we can’t just tell him to be quiet."

Read about how the night unfolded at My Father's Day Pledge.

And let us know if you've experienced times when people have attemped to 'silence' or in some way reject or ostracize your child in a public place because of his differences. Louise

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At Uncle Ian's garden

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'It's not what you see, but how you see it'

This is a fascinating piece about Dr. BJ Miller (above), a university student who became a triple amputee after an accident, then went on to become a palliative pain doctor running a hospice in San Francisco.

I was struck by this quote about what he's learned since acquiring disability: "It's not what you see, but how you see it."

I've written Dr. Miller to ask if he'd share his insights with BLOOM. Louise

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'He's teaching siblings that they can speak out'

I got excited when I interviewed Nathalie Wendling, mother of Tommy and Melanie (above), this morning, for the June BLOOM magazine. We are going to feature Tommy as a role model! You all responded so positively to the piece we just ran about the family's book: Melanie and Tommy have two pet rats and one syndrome that I couldn't 'not' share this with you. Nathalie touches on key points to consider about the experience of siblings of children with disabilities. It certainly made me sit up and take note. Thanks Nathalie! Louise

'He's teaching siblings that they can speak out'

Tommy Glatsmayer wanted to write a book. At first, it was a story about a boy, a villain, a car crash, and a pet rat that saves the day. Then the senior kindergarten student introduced another character: his sister Melanie, who has Cornelia de Lange syndrome, multiple disabilities and chronic illness. In 2010, Tommy’s book was published as Melanie and Tommy have two pet rats and one syndrome. Tommy now speaks at schools – with Melanie and their rats at his side – and has been interviewed widely by mainstream media. His mother Nathalie feels that the impact of disability on brothers and sisters of the affected child is often overlooked or minimized. “I think Tommy’s a role model because he’s teaching other siblings that they can speak out,” Nathalie says.

BLOOM: Describe Tommy.

Nathalie Wendling: Everyday is Christmas for Tommy. He wakes up super excited every morning. He loves to help people and is very social. He’s really easy going and doesn’t get upset often. He loves his pet rat. He loves to create things – like taking all the recycling in and building something. He loves people and having friends over. He likes sports and adventure.

BLOOM: How has Tommy been affected by Melanie’s syndrome?

Nathalie Wendling: I don’t think we understand, as parents, the extent of how siblings feel. I think they have a lot of stress socially. They can be embarrassed about their sibling in social situations. I think at home Tommy feels my stress as a parent. By the time I get to Friday I’m exhausted trying to get Melanie out of bed on time and he’ll have a five-course breakfast laid out for me! If Melanie’s having a bad day and I’m almost in tears, he’ll do something to lighten the moment.

BLOOM: So Tommy will compensate by being extra helpful?

Nathalie Wendling: Yes. At age five, he was cleaning the bathrooms and vacuuming. At age six he was making scrambled eggs and French toast. At seven he shovelled our driveway, the neighour's driveway and the whole court. At other times he might act up if he feels Melanie's getting too much attention. It takes me about 45 minutes every morning and night to get Melanie out of bed or to put her to bed. She needs ear drops, nose spray, hearing aids, her teeth brushed, to be dressed, and her medication. I started to notice that Tommy would misbehave then. It was his hardest time of the day. It’s almost like he wants his own 45 minutes of intense time with me.

BLOOM: Has Tommy ever spoken about wanting more attention?

Nathalie Wendling: No, he hasn’t articulated that. But last Christmas, when they saw their cousins, who are the same ages, I think it hit him how behind Melanie is in everything. “It’s so weird, if Melanie was normal she’d have an iPod and be doing this and that,” he said. But by the end of the conversation, he’d found a positive: “We’re lucky that Melanie has a syndrome because we never fight,” he said. He had noticed that all of the other siblings fought at this age and took the positive over the negative.

BLOOM: It’s obvious in the book that Tommy loves Melanie.

Nathalie Wendling: He always wants to participate in helping her achieve things. For example, recently he taught her about the planets. But he did it for three hours, five days in a row! It took three years for Melanie to learn the letter P and Tommy worked at it with her for almost three years. Melanie tends to want to play in her own world, and Tommy does everything he can to get into that world to play with her.

BLOOM: How did the book come about?

Nathalie Wendling: We wrote the book together. Tommy was in charge of the story. He wanted to make it funny enough to entertain his friends while still educating them about Melanie’s syndrome. In Grade 1, Tommy came home devastated because his friends were making fun of Melanie. We had never seen him cry so hard. He loved his sister and couldn’t understand why they were being so mean. As we were searching for solutions, we decided to self-publish our book right away. The book was overwhelmingly successful. We couldn’t believe it. We’ve sold more than 6,000 copies in less than one year. Their friends loved it.

BLOOM: It sounds like the book has given Tommy a way to shine with his sister?

Nathalie Wendling: During school presentations he loves being up on stage with his sister. He loves the recognition that they're doing something together. He’s helping children, gaining attention and inspiring others. They have their rats with them and it makes the kids laugh. It’s a fun way of creating awareness about Melanie’s syndrome, rather than talking about her 12 operations. He feels like he’s making a difference. Children come up to him afterwards with similar stories. Just this weekend we were at a fair and a teenager came to tell him: “I have a brother with autism.” There’s such a strong bond between siblings. The book is also a way for Tommy to be recognized. Melanie may hear “good job” 50 times a day, but we tend to forget to praise Tommy. For him, the book presentations fill so much of what he's longed for. He's making people laugh and smile and sharing special bonds with siblings, adults and seniors in similar situations.

Visit the family at http://www.2petrats.com/.

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Pick a wish

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On a different path

"It's so hard for him to learn," I told D'Arcy today.

I had hoped that Ben could benefit from the Kumon reading books his brother is doing. He did well circling or pointing to the answers with one of them.

But today when I tried to get him to do a second book, he couldn't focus and was disinterested. I could hear frustration mount in my voice as I tried to get him to do something he didn't want to do.

I felt defeated then and gloomy about Ben's future.

"He can learn, just not as fast as you'd like him to," D'Arcy said later.

It was a beautiful day with brilliant sun and we were walking through a wooded area. But I couldn't enjoy the sun -- or the lapping water or the frogs singing to each other -- because I was carrying my own black cloud around with me.

How can I be happy if my son can't read at a certain level? And express his thoughts through writing?

Maybe I can't push Ben's development forward, I thought. And maybe things like reading aren't important to him. Maybe he's on a different path, and who am I to force him down mine?

He is happy. So why can't I be happy for him?

I believe that happiness is a choice, one that can be chosen in any circumstance when we embrace life as it is, instead of fighting against it.

What do you think?

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Tommy explains his sister

A couple of months ago a new children’s book crossed my desk. It's called Melanie & Tommy have two pet rats and one syndrome. The book is narrated by Tommy (above right) and follows his adventures with sister Melanie (left) as they push their pedal car around their Ontario farm and rely on two pet rats to get them out of trouble. Tommy came up with the book idea when friends made fun of Melanie, who has a rare genetic condition. I’m delighted to share this blog by Tommy and Melanie’s mom, Nathalie Wendling. Nathalie writes about how the family's book came to be and the impact it’s had.

Tommy explains his sister
By Nathalie Wendling

Our daughter Melanie was born with Cornelia de Lange Syndrome (CdLS). There are only 100 diagnosed cases in Canada. Melanie is 11-years-old and has had 13 operations. She has vision and hearing problems, eating difficulties, chronic infections and developmental delays. Her speech is limited and she still wears diapers. Tommy, our son, is eight-years-old. Both children love their pet rats.

When Tommy was three we explained to him that his sister was different. We told him that most of us are made of peanut butter and jelly but that Melanie was missing the jelly. In kindergarten, we replaced those words with skin, blood and chromosomes. We said that most of us have 46 chromosomes and that Melanie only has 45 working chromosomes. He understood.

One day, Tommy came home and said he wanted to write a book. All of his stories seemed to revolve around the same ideas: a boy, a villain, a car crash and a pet rat that saves the day. After writing a few stories he said he wanted to introduce a girl to his adventures.

This is how the book ‘Tommy and Melanie have two pet rats and one syndrome’ was born. We wrote the book together. Tommy was in charge of the story. He wanted to make it funny enough to entertain his friends while still educating them about Melanie’s syndrome. I was in charge of making it informative and educational so it could be used to raise awareness about CdLS. I really wanted to focus on the word ‘syndrome.’ Many of the children’s friends had never heard this word before. I wanted to include questions and answers. I found that children seemed to have similar questions about Melanie and about their pet rats. Questions like ‘What is a syndrome?;' ‘How does it affect Melanie?;’ ‘What do pet rats eat?;’ and ‘How long do rats live?’

In Grade 1, Tommy came home devastated. His friends were making fun of Melanie. We had never seen him cry so hard and so long from emotional pain. We just couldn’t console him. He loved his sister so much and couldn’t understand why his friends were so mean. As we were searching for solutions, he started to calm down. We discussed our options, which included speaking to the principal or calling some mothers. But then we had a better idea: Why don’t we self-publish our book right away?

We announced the release of the book on the last day of school. I was terrified.

That morning as we drove to school I said to Tommy: “This could end two ways. Everybody hates the book and the situation will be much worse or everybody likes the book and understands Melanie a little bit more.” Without hesitation Tommy replied, “They will love it because I love it and I’m a kid and I know what kids like.”

I took a deep breath!

The book was overwhelmingly successful! We couldn’t believe it! We’ve sold more than 6,000 copies in less than one year. Their friends loved it.

Tommy’s friend Emily slept with the book for two weeks and wouldn’t share it with her siblings.

Erica said: “She’s not much different from the rest of us!”

Katrina said: “We think Tommy is so cool for sticking up for his sister.”

Aiden said: “I don’t think she’ll get bullied anymore.”

Clare said: “Melanie is the most famous person in Manotick because of this book!”

Parents understood her better and were finally comfortable enough to invite her for play dates and even sleepovers. How exciting!

By Grade 2, we were invited for a book reading at a public school. Tommy told me he really wanted to present the book himself with Melanie by his side and their two pet rats. During the presentation my husband and I were overwhelmed with emotion. The more the children laughed, the more our tears fell. We were so proud of Tommy. He demonstrated such courage. By the end, he walked towards me, grinned and asked: “What’s up with all the Kleenex? “

I couldn’t speak. He smiled and understood.

With so much of our attention focused on Melanie’s needs, Tommy has always been looking for ways to help and stand out. At four-years-old he was teaching Melanie how to count, play and laugh. At five, he was cleaning the bathrooms and vacuuming. At six he was making scrambled eggs and French toast. At seven he shovelled our driveway, the neighbour’s driveway and the whole court.

For him, the book presentations filled so much of what he had longed for. He’s helping children, gaining attention and inspiring others. He’s making people laugh and smile and sharing special bonds with siblings, adults and seniors in similar situations.

At one book signing a boy stood in front of our table, looked straight at Tommy and said: “Hi, my brother has Down syndrome.” Tommy smiled and replied: “Oh yeah, my sister has Cornelia de Lange Syndrome.” They shook hands and exchanged smiles. It was priceless.

A mom emailed to tell us that her son, Oren, was inspired by Tommy. Oren decided to make a presentation about his own sister’s syndrome to his friends at school. “I’ve never seen that side of him,” his mom said.

Educating people about Melanie is exhausting, repetitive and sometimes depressing. The rats and book have made it easier, more fun and even added some excitement. I keep a few copies in my bag and hand them out when I don’t feel like explaining her condition. For example, starting new sessions in gymnastics we meet new parents and children. When they stare at Melanie and figure out that something is different, I simply give them a book. It’s perfect!

We live in a small town called Manotick located near Ottawa, Ont. Last week we decided to venture out of our neighbourhood to a park further away. I watched from afar as Melanie was approached by a gang of Grade 6 kids on the play structure. After 10 minutes, I was surprised to see the boys teaching her how to climb to the top of the structure. Soon after they were integrating her in a soccer game with 12 other children. I was so confused. I approached the boys and said: “You know that she can’t really speak, right?” One of the boys answered: “Yes, we read the book.” Connor and Drew played with her for almost three hours. Wow!

Siblings of children with disabilities seem to live through an excessive amount of social pressure, guilt and family stress that parents don’t have time to deal with and don’t fully understand. This book has changed Tommy’s life in ways that we never imagined.

When one reporter asked Tommy what his favourite part of co-writing this book was, we thought he might say TV and radio interviews; having his picture in newspapers; his friends thinking he’s a celebrity; book signings in different cities; sleeping in hotels; receiving fan mail from the U.S.; or a standing ovation at the end of a presentation.

Nope.

“My favourite part is that no one makes fun of my sister anymore!” he said.
I think the best advice we have to share with other parents is that the more details you provide about your child’s disability to friends, family, teachers, neighbours and peers, the more your child will be accepted socially. At the same time, this will help reduce some of the stress and social pressure siblings experience.

Another strategy that has really helped Melanie be included with peers is that since kindergarten, we have always invited three to six girls over at a time (not just one!).

Melanie could only speak 20 words by the age of five, so play dates were difficult. But as a group, the girls have so much fun together and have figured out how to include her. When they come over, we always discuss Melanie’s syndrome, how it affects her and how they can help her. This has been a huge effort but has brought many rewards.

Melanie is now in Grade 4 at St. Leonard’s Catholic School and everyday those same girls who come to our house search for Melanie at recess and include her in talent shows, birthday parties and sleepovers. They have taught her how to love Justin Beiber, how to play tag, how to enjoy a manicure and how to stay up until midnight talking about boys.

The girls write songs and letters about how Melanie is like a sister they never had! They help Melanie go to the bathroom, eat, play, dress and so much more.

"Thank you girls! Because of you, integration is not just a myth, it has become real!”

Tommy also attends St. Leonard’s Catholic School. His kindergarten teacher once said, “Many of the children want to write books but I’ve never had a student who wanted to write a book about his sister. He’s one of a kind!”

“Thank you Tommy. You spoke loud enough to make a small difference around the world and a big difference in your school. We can hear you and we love you.”

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