Wanted: friends

By Nathalie Wendling

I think having friends is the most important thing in life. No matter how bad my day is going, having a friend around seems to make it better.

Finding friends for my 14-year-old daughter Melanie (above right), who has Cornelia de Lange syndrome, has been an endless, exhausting and sometimes devastating, struggle.

In nursery school, the whole class was invited to a birthday party—except Melanie! In Grade 2, Melanie was invited to a party, but bullied when she got there. Girls took turns pulling down her pants and laughing. There were so many difficult moments and painful realities that I didn’t want to see.

In elementary school I figured out one-on-one play dates didn’t make sense. Melanie couldn’t communicate properly and had no idea how to socialize. So I'd invite a bunch of girls over at the same time. Over the years, these girls learned how to communicate with Melanie, understand her differences and even help with some issues like toileting. The girls were comfortable with all of it. They loved Melanie and loved coming over as a group. The hardest part was accepting that Melanie could never bond with the girls as well as they’d bond with each other.

By Grade 5, our local school couldn’t meet Melanie's needs. So we placed her in a special program 45 minutes away. The program was designed for children with special needs. We were excited and curious to see if Melanie would bond with other children with disabilities. 

Within two years, Melanie made a friend at this school. But she lived far away. We tried a few play dates but the distance to get together was absurd. We'd drive three hours for a two-hour play date. Melanie would cry. She wanted to see more of her friend. The two girls were very comfortable with each other. They'd spend hours on the phone, which was amazing because Melanie can’t really talk.  

Melanie seemed more at ease and confident in her new classroom as well, which was a program for 10 children with special needs (as opposed to the full integration with an assistant she’d had in our local school).  

Then, in Grade 8, Melanie had numerous health problems. She was absent from school for almost six months. It was awful, lonely and depressing. No phone calls, no visits, no cards and no friends nearby. Her new friend lived too far away. Melanie was alone all the time. She seemed depressed for the first time in her life. It was heartbreaking. 

“This is not a life,” I said to my husband and son Tommy. “Something has to change. Friends are so important. We need to figure something out. We need to find friends! We live in a small neighbourhood. Where is everyone? Everybody deserves at least one good friend!”

So we discussed some options. We decided:
-Melanie needs to attend a school with a special-needs program with some integration that is much closer to home (one exists in our neighbourhood for Grade 9) 
-Melanie needs to find friends, maybe peers with special needs, close by.
-Melanie needs to get out of the house to an activity in our neighborhood—not downtown where most of the activities are offered
-As a family, we need to find a common activity that isn’t TV! We can't ski, skate or go swimming together, so what else can we do? 
-As a community, we need something for everyone: children with and without disabilities, teens, adults and seniors. We need inclusiveness and integration. Melanie enjoys being around people of all ages. 

After months of thinking and intense discussions, we had a plan.

Last spring we started a hand drum circle in our basement with two other families—moms, dads and siblings. We found a teacher and bought some hand drums.

After six months, we moved the drum circle to the Legion in our neighbourhood. And the circle keeps growing. By February, more than 50 people will join: old, young, teenagers, those with and without special needs. Everyone in our community is invited.

The drum circles are a blast of energy and super social! We never imagined they would be this fun! Melanie and her brother Tommy have made new friends. My husband and I have made new friends (we needed some too!).

Melanie was able to reconnect with her elementary school friends from the community. Last week, we invited the group of girls who used to come to our house when Melanie was younger to the drum circle. Melanie was ecstatic to see them!

Melanie also gets to make new friends. One is Rob, who is 31 and has cerebral palsy (above centre). He attends the drum circles on a regular basis. He also comes over to our house for dinner and watches Tommy (above left) play hockey at the arena.

Melanie, Tommy and Rob have become good friends. They laugh so hard together that they can’t breathe! And that makes them laugh even harder.

Nathalie Wendling is happy to answer questions about her drum circle at nats.wendling@gmail.com. You can follow the family at 2 Pet Rats, the website they created when Nathalie and her son Tommy wrote Melanie and Tommy Have Two Pet Rats and One Syndrome.

Read More

No more accidents!

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.

Read More

Two pet rats -- and one syndrome

A delightful children's book landed on my desk today. It's called Melanie & Tommy have two pet rats and one syndrome.

It's narrated by Tommy, 6, and follows his adventures with sister Melanie, 9, 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 his sister, Melanie, who has Cornelia de Lange syndrome, a genetic condition.

Listen to this CBC radio interview or visit the family at http://www.2petrats.com/.

Read More