Friday, June 19, 2015

Two Pet Rats and One Syndrome

Tommy Glatzmayer and his older sister Melanie are from Ontario, Canada. Melanie was born with a rare syndrome called Cornelia de Lange Syndrome (CdLS). CdLS is a chromosomal disorder that has just 100 confirmed cases in Canada. Melanie has vision and hearing problems, limited speech, and significant developmental delay.

When Tommy was just six years old, he wanted to write a book. He wanted to teach his friends about his sister's rare condition, so that they would understand why she was different. Tommy and his Mom, Nathalie Wendling wrote the book together. He was in charge of the story, making sure it was funny enough to entertain his friends. She was in charge of making it informative and educational so that it could be used to raise awareness about CdLS.

In grade one, Tommy came home from school crying because his friends were teasing his sister. He said they were teasing her about her work and how she can't see and can't write her name well. Tommy was very upset and said that he couldn't stand it anymore. He wanted them to stop making fun of her, and so his Mom decided to self-publish the book immediately.

Tommy and Melanie have Two Pet Rats and One Syndrome” was born!

Since then, Tommy and Melanie have been presenting their message of acceptance to audiences all over North America. They have visited all ten provinces in Canada, and have distributed over 10,000 books to individuals, schools, hospitals and libraries.

In Grade 3, Tommy realized that his presentations and books were helping all of the "Melanie's" out there. They were introducing children to the concept of disabilities and differences, and encouraging children to help others. Tommy says, "If you see someone different, smile and say hi."

"Staring is rude. But if you are going to stare at someone for a long time, wave, smile, say hi, then smile again! If the person can't speak, they are usually accompanied by someone who can. Smile, smile, smile. Smiling is not rude!"

Tommy and Melanie just completed their cross-country tour with their final stop in St. John's, Newfoundland. They presented to a group of families and health care providers at the Janeway Children's Health and Rehabilitation Centre, where Brennen and I were thrilled to meet the duo.

Here is Melanie meeting another little girl with Cornelia de Lange Syndrome.

And our sweet friend Graysen, who also has CdLS.

"If you see someone different, smile and say hi", is a message that really hit home for me. So often, we encounter people who don't know what to say to Brennen, or don't know how to act around him, but it is really just that simple - smile and say hi! 

People stare because they are curious, but curiosity can turn to cruelty if children do not have advocates. I think every parent of a child with special needs has at least imagined, if not experienced, a moment where their child was made fun of or left out because they were different. My heart breaks just thinking about someone at school being mean to Brennen, or calling him names. I can't even bear the thought of people making fun of him or picking on him because of his disability.

We should all be teaching kindness and acceptance to our children, so they will have compassion and not turn into bullies. We need to talk about differences. We need to ask kids what they want to know and provide them with the information that will erase the lines of discrimination. Every child is unique and special and we should celebrate that fact! Though some children, like mine, bear extra titles like "special needs", every child is special and each one has unique needs.

Tommy and Melanie, I want you to know that I love what you are doing. Opening up to audiences of children, teachers, and parents makes my job as a Mom a whole lot easier. You are changing perspectives and celebrating differences. You are raising awareness and breaking down barriers, and your work is appreciated. It was a pleasure meeting you both, and I wish you continued success and happiness!

Tommy says, "I want to continue this project and hope that we make a difference in this big country. It's not just adults who can make a difference. Kids can too."

For more information about Tommy and Melanie and their two pet rats, visit their website at 

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