Many of you remember Tommy Glatzmayer (left) and the book he wrote with his mom Nathalie Wendling: Melanie and Tommy have two pet rats and one syndrome.
Nathalie just sent me this exciting update on her daughter Melanie (right), 11, who has Cornelia de Lange syndrome. For years, Nathalie has tried to toilet train Melanie. This summer it happened. Nathalie tells us how:
Over the summer, I desperately tried to toilet train Melanie -- as I do every summer.
She has not worn a pull-up since 2005, but we needed to bring her to the washroom every two hours. She would have a few void accidents weekly, but most of her bowel movements were accidents. In August, I decided to duct tape a night-time potty training buzzer mechanism to her underwear during the day. She would wear a normal pair of underwear and then the second pair would have the duct-taped mechanism, so it would not touch her skin.
At first, I was very depressed, as the device was ringing all day. I was convinced her brain was not capable of sending the signals. But I decided to leave the mechanism there anyway. It was relieving some stress from my life. I didn't have to force her to go to the washroom -- the buzzer was doing my work. After 15 days, Melanie was completely toilet-trained. Suddenly it was September and back to school.
I tried meeting with the teachers to explain about our success and the buzzer, but no one had time to listen. No one wanted to listen. I was made out to be some kind of crazy mom with a crazy agenda.
The staff continued to bring Melanie to the washroom every two hours and they wouldn't stop. It was confusing her brain and she was having many accidents.
We pulled her out of school at the end of September and set up a meeting. Our team consisted of a psychologist and a speech pathologist with some medical evidence written by a doctor that Melanie was physically capable of knowing when she needed to go to the washroom. Both professionals have known Melanie for over six years and believed she was capable of requesting to go to the washroom
What we discovered was that Melanie was terrified to let people at school know she had to use the bathroom. She didn't know how to interrupt the teacher or interrupt her friends. Melanie can barely communicate, never mind find the confidence to interrupt.
After a few meetings, some professionals from the school board got involved and the board said it would make a plan of action for all staff to follow by the end of October.
We sent Melanie back to school last Monday on the condition that they follow our plan of action until their plan had been formulated. It was so difficult for Melanie. She was so stressed. We rehearsed and rehearsed and rehearsed every single scenario at home. I spoke about fear, friends, teachers. I spoke and spoke and spoke. I wondered if Melanie understood any of it.
I had not slept in two months. I knew this was my last chance of ever training her. The school board could decide that Melanie wasn't ready and order her back to the washroom every two hours. This was it. The time was now. I could smell, feel and taste Melanie's success. I knew she was ready, why would no one believe me?
This was a very important week in Melanie's life. Melanie had to find the courage: the courage she never had before, the courage she did not know she had.
October 17 - Melanie went to the washroom once.
October 18 - Melanie went to the washroom once.
October 19 - Melanie went to the washroom once.
October 20 - Melanie went to the washroom four times.
Ocotber 21 - Melanie went to washroom five times.
Melanie found the courage and she loved it. What a show off! She was so proud. We are so proud.
Is it finally my turn to walk out the front door with no diaper bag? Has that time finally arrived for me? Is it real? Is it really happening?
My advice to other parents? We have tried three different buzzers. The best one is available at Costco pharmacy. It has a rubber tip (this part is taped to underwear). You must order it at pharmacy counter and it is ready for pick-up next day. I would recommend doing this intervention during the summer as the students and staff at school found the buzzer to be very distracting and apparently even psychologically disturbing.
Please learn from our mistakes and schedule a big meeting with all school staff before introducing the buzzer in the class environment. All staff and students need to be properly informed and prepared.
I am convinced we would not have had success without the buzzer. I desperately tried everything for so many years. The buzzer enabled Melanie to make the connection.
We took this picture this morning. The buzzer is kept in a little pouch (cell phone holder). The pouch is pinned to her pants with a large safety pin.
Melanie was very excited to take this picture today. She understands and is proud of her accomplishments.