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.”

Visit us at http://www.2petrats.com/