Selective Mutism Awareness - Marie's Contribution

October is Selective Mutism Awareness Month, along with all the many other causes that share the world's attention this month.

Our daughter, Marie, has Selective Mutism, which I've made brief mention of in the past. It's a big part of our lives, but not something I really talk about here since we firmly believe that it should be Marie's place to share if she'd like, not ours to speak about for her. Recently, though, her desire to share has surfaced quite a bit in many incredible ways, and I am honored to be able to use this platform to help her share as she wishes.

In the past, we hadn't really put a name to the condition when talking to Marie about her challenges, because it simply wasn't relevant yet. As she's grown and learned about the world though, her curiosity and thirst for knowledge have resulted in more involved discussions and a greater depth of understanding of her condition. So over the past year, we've taught Marie the term Selective Mutism, what it means, and that there are other kids in the world who also have Selective Mutism and who are also working hard to do brave things every day. To help this process, at the start of the school year I ordered a fantastic children's book called "Can't Talk? Want to Talk!" written by one of the mothers in my UK-based Facebook group, SMIRA, which stands for the Selective Mutism Information & Research Association. (Thus far, most of the research and studies for intervention/treatment has been done in the UK). Marie read the book herself as part of her homework reading assignment, and has asked a few times already throughout the year about sharing information with others so they can understand Selective Mutism, too. Marie also explained Selective Mutism to an older student at school one day during a break, because she said she felt comfortable enough in the moment to teach the student about it when the subject of her not talking came up.

I was extremely impressed with her desire to advocate for herself and spread awareness, so a few weeks ago I asked Marie if she wanted to do anything special for Selective Mutism Awareness Month. Her response? She wanted to make a diagram showing what happens physiologically to someone with Selective Mutism, and have her teacher tell her class about it. She also requested that I share it with Facebook. I searched high and low to see if there was any such diagram out there, and I could find nothing. So we created it together--though really, she did most of the work. She also gave an interview, which you can read below.

One thing that I've learned is that even when kids with Selective Mutism sometimes can't speak, they are not necessarily shy. This is clearly true in Marie's case. If she has something to say, she is determined to find a way to communicate her message, and she's not afraid of doing the hard work to make it happen.

If you had asked me before I became a mother what my proudest moment might be, never in a million years would I have guessed that this was it. Now, I'm so glad it is, and I wouldn't trade it for anything.

World: this is what our 2nd-grader, miss Marie, would like to teach you about Selective Mutism.

AN INTERVIEW WITH MARIE ABOUT SELECTIVE MUTISM

What is it like to have Selective Mutism?

"Embarrassing. I can't talk when I really want to say something, especially like on the first day of art, when kids got a piece of candy for answering questions right about the rules and I couldn't say anything even though I wanted to."


When is it most comfortable to feel like you can talk in school? 

"When I'm around my friends and no one is embarrassing me."


Why is it easier to talk to your friends? 

"I'm way more comfortable around them because they act nice and funny around me and they help me and treat me the same as our other friends."


When is it hardest to be comfortable and what makes it too hard to talk?

"When I have to stand right in front of the class and they want me to talk. When someone is rude about trying to make me talk or tries to get me to talk. It makes me want to walk away and I never really feel like I can talk to them."


What do you want the world to know about Selective Mutism?

"Not to tease about it. Just ignore them [not talking]. And it will be easier for the person to talk if you ignore it."


Interview by Marie. Questions by Marie’s Mom.

Winterpalooza

Last month before Christmas, (another late post--imagine!) the kids participated in their very first Winterpalooza at our gym! The program was staged as a competition, where the students in the recreational programs (who don't normally compete) have a chance to perform routines on the different events, and experience some friendly competition with scores and medals and ribbons and jazz. 

I was coaching my own class during the event, so I didn't catch Marie and Erik's routines in their entirety, but I was able to sneak a few peeks while waiting to switch events...I caught lots of smiles and at least one good wipeout!

Wipeeeouttt!!
(I got to witness it first-hand!)

They did four events-vault, bars, beam, and floor:

(He did awesome on his second attempt!)

And I found out that I make some pretty awesome faces while spotting:

Full credit goes to Peter, who took on the task of snapping lots of pictures in my place (you know how painful that can be for non-picture-takers) which made me happy since I got to see on the camera what I missed in person. Also many thanks to Gran, Granddad, and Ethan, who were present to cheer on the kids during the competition--all four hours of it.

Both kids had a blast, and Marie even chose to get on the podium for a photo-op after the gym had cleared out, and begged to take her medal to the pizza place (the clear lunch of choice following any Winterpalooza) and school the next week to show it off to everyone she saw.

The whole program showcased the many reasons I am so thankful for our gym. With all the years I spent in a gym, I've seen many different environments, and it's clear that this isn't just any old gym--it's got something special going on. I appreciated the fact that they concentrated on the little things at the Winterpalooza (a personalized score card and ribbons for everyone, scoring so that every child could stand on the podium at least once, handmade 'bouquets' made of Dum-Dums just like the bouquets of flowers Olympians get)--but even more than that, I am so encouraged by how much they care about each and every gymnast. As I watch my own kids in this environment, it's obvious how both are just flourishing in the programs and gaining confidence to help overcome their unique challenges. We weren't sure that a certain someone would even participate in the program because it was so performance-related, but we all agreed to give it a try; and aside from not wanting to receive an award on the podium, it was all smiles and full-out participation. That, in itself, was monumental for us. I'm so thankful for the accommodations and understanding of the kids' coaches (one of whom is the owner), and their ongoing willingness to work with the kids and adjust to their needs, regardless of how much out-of-the-box thinking it may take. As an staff member, it's a great feeling to be a part of. And as a mom? It's priceless to know that my kids have a safe outlet where they are comfortable, loved, cared for, and understood. It's the best thing ever to watch them overcoming obstacles and gaining confidence, one accomplishment after another!

I loved the look on Erik's face when he was presented with his medal--and we had to coax him
off of the podium because he was so busy showing the crowd his very own bouquet of candy!

Yet another one of those little things about our gym: the owners are constantly decorating for the current holiday--Halloween, Thanksgiving, Hanukkah, etc.--and as Christmas rolled around, they set up a tree and made little stockings by hand with the name of every child in every class, which they got to hang on the Christmas tree prior to Christmas. Then they filled the stockings with candy canes before the last class of the year so the kids could take them home. It was fun to participate in the tradition with my class, and awesome to watch my own kids delight it it--especially Marie!

They're very bummed that they have to wait a whole year until the next Winterpalooza. But in the mean time, Marie has grand schemes to have her birthday party at the gym, and we spend lots of Saturdays at open gym where Ethan also gets to bounce and flip around.

I'm currently searching for fail-proof ways to protect my eardrums from all the shrieking and cheering that happens when I remind them it's a gym night. But truth be told, I have the same reaction whenever it's my night to coach. It's funny to think that none of this was even on our radar at this time last year, but turns out it's exactly what we all needed most!

Selective Mutism

A few months ago we discovered that our sweet girl was dealing with a pretty uncommon condition called Selective Mutism.

For her sake, we're keeping personal details out of the public eye. But since I had such a tough time finding information and figuring out where to even start to help her, I've compiled this page of information in case there are others out there in the same boat.

For those interested in more detailed information, I'm recording our personal journey on a private blog. For an invitation to follow it, please contact me by clicking here. 

I also know how frustrating it can be to run into dead ends seeking treatment or to have questions that remain unanswered. We still have a long road ahead of us, but we've come a long way in just a few months So if you have any questions (or advice to offer!), I'm all ears. Just click the contact link above.