Tommy and Melanie sat up front going through a well-practiced performance of questions and answers. Tommy, now nine, answers almost of the questions. He is used to answering for Melanie – he’s been doing it his whole life.
It was questions about Melanie that prompted Tommy and his mother, Nathalie Wendling, to write a book. Melanie and Tommy have two pet rats and one syndrome is superficially about the siblings and the adventures they get into while doing household chores. Really, the book is Tommy’s way to explain to people that his sister, who has Cornelia de Lange Syndrome, is a wonderful person and lots of fun.
CdLS is a chromosomal disorder that means Melanie has limited speech and significant developmental delay. For her first eight years, she was in excruciating pain from life-threatening reflux and eating issues as well as severe ear and sinus infections, pneumonias and behavioural problems. During this time, she had 11 operations. The whole family’s existence focused around finding a doctor who would believe Nathalie and her husband, John, about Melanie’s problems.
This was the world Tommy was born into. Growing up, he played with Melanie, helped with her care, patiently worked with her to increase her vocabulary from 20 to 500 words.
When Tommy started at school, he was deeply hurt by people making fun of how Melanie did her school work, wrote her name and wore diapers. He didn’t understand why they didn’t accept her the way he did.
The book was his answer to this. It was his way to show everyone else how great Melanie was. It doesn’t whitewash their lives. It talks about Melanie needing medicine, her hearing aids, teaching her to speak and that Melanie will always be smaller than Tommy.
Since self-publishing the book – publishers said a book with “syndrome” in the title wouldn’t sell – the family has done more than 35 presentations to schools and community groups. They have received extensive media coverage. Tommy is very clear on why he does this: to help people like Melanie be accepted.
The family – and the rats – recently did their presentation as part of Holland Bloorview Kids Rehabilitation Hospital‘s speaker series. It was a sympathetic and appreciative audience who listened to Tommy and Nathalie answer questions and speak about their lives. Tommy is a bright, precocious kid who doesn’t shy away from the spotlight.
Maybe that’s not surprising since usually his family’s attention is focused on Melanie. Siblings of disabled kids have to find a way to cope with waiting, missing experiences and from an early age, comprehending issues with which all of us struggle.
Nathalie said Tommy spent much of Grade 1 and 2 crying because of the way people reacted to Melanie. She also said there have been times he has acted out – demanding help getting dressed because Melanie got help or generally expecting to get the same treatment as his sister.
We are all taught to be fair, to treat all people the same way, that things should be equal. Siblings of disabled kids have to square those rules with an existence that is neither equal nor fair.
Nathalie acknowledged that there is no way she can give her two children the same amount of attention. When Tommy is upset, she said she “gives him a hug until he cries and everything comes out. Hugs fix a lot of problems.”
My daughter shares Tommy’s experience. She is the younger sibling of a disabled child. Her whole life has been adapted around how slow Deane eats, where we can go with his wheelchair and what he wants to watch on TV. This is her reality. She has never known any other way.
The day after I heard Tommy and his family speak, I sat at the table as my daughter made Deane laugh uproariously which, in turn, made my husband and me laugh. She is patient, helpful and, at times, frustrated, but nothing makes her happier than making her brother laugh.