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/.