not speaking

I find myself at a loss of words when it comes to this post, which I guess is appropriate considering the topic for which I have no words is the Not Speaking campaign for Rett syndrome organized by Rettland Foundation. 

This October, many joined together and took a pledge to NOT speak for one hour in an effort to raise awareness for Rett syndrome. Other forms of communication were allowed, but no speaking. Stickers were provided for each participant to wear as well as cards to pass out with information about Rett syndrome. 

We had some family and friends sign up and support us, which we are so grateful for, but I was really touched when Leah's 1st grade class decided they would collectively not speak for an hour. 

Yes, 17 six and seven year olds NOT SPEAKING for an hour. Their lovely teacher had them begin during the last 30 minutes of instruction and then continue for the next 30 minutes as they traveled home. 

After the experience, she wrote an email describing some of their thoughts and feelings and her words are much better than mine. 

"I'll start off by saying my expectations were low when deciding to ask 17 six year olds to be silent for ANY amount of time. Let alone an hour. I just have a VERY chatty group this year, so I knew it wasn't going to be easy... Or so I thought.

They not only surpassed my expectations, but they shocked me! They really did 'not speak' for the full 30 minutes!! If only I could use this campaign every day! I'm not sure how they did once they left my classroom to head home, but they each worked so hard before dismissal. There were a couple of slip-ups and then others would take it so seriously and remind them to be quiet. I even heard a girl whisper "For Leah!" which completely melted my heart. It was amazing and touching and so cool to witness.

The next day we discussed the experience while sitting in a circle. Leah joined us so the kids could ask her questions as well.(Leah was also in the room for the "not talking") Many students said "it was hard" for various reasons, most being that they couldn't communicate what they wanted. One student, told the class the hardest part was when a friend couldn't read the card and his friend started thinking he was mad and didn't want to be his friend anymore. He used the word frustrating to describe how he felt, and he admitted he finally cracked and talked "just a little" to tell his friend the real reason he wasn't speaking. You could tell he was truly conflicted over it. It led to a great discussion about how frustrating it must be for Leah ALL the time, and when we asked her - she gave a very big YES! it is frustrating sometimes.

Some students shared things they did to help them communicate... Writing notes, using our mini whiteboards at school, or even hand motions. On student raised her hand and asked "But what does Leah do, since she can't really do those things?" Again, was a great point that we were able to discuss. Leah told us "yes" she can use her hands sometimes (with a switch or cards) but that it was hard.

When I asked what they learned, a student explained they learned more about what is was like to be Leah or any girl with Rett syndrome. We talked about how that was the point of this experience and hopefully others learned a little, too, when we "talked" to them.

We finished the discussion with a picture and I believe Leah LOVED every minute of the attention and celebration."

After their discussion, the kids in her classroom wrote about their experience. Here are some excerpts of what they said:

"It was hard I couldn't speak to my friend and my friend couldn't speak to me. It is not easy to be Leah."

"I learned it is hard. I had to write on a piece of paper."

"I couldn't tell my mom how my day was."

"At my house my friend came over and it was hard to ask which game he wanted to play. I used my fingers to tell my mom to help. It was pretty hard. I loved it."

"I had trouble on the bus because other kids tried to talk to me."

"I feel bad for Leah, but she is used to it. I am not."

"I think that it's hard for people that have Rett syndrome to do what they want to do."

"It taught me that kids that have Rett syndrome can not communicate how we can."

"It was hard! The frustrating part was when I had to ask to go to the bathroom, but I couldn't!"

"If you wanted to tell someone to stop, you couldn't and that was hard."

"It was hard, but also exciting because we got to know how it is to be Leah."

"Leah talks with cards. I learned that people talk in different ways."

To be honest, I find so many of these revelations so eye opening. But there are a few I really love. 

"It is not easy to be Leah."

That student is so right. It isn't easy to be her. And yet, more often than not, she makes it look easy-ish because of her attitude. I need to be continually reminded of how NOT easy it is to be Leah. 

"I feel bad for Leah, but she is used to it. I am not."

There is so much truth in this statement. She is used to it and there is something to be said about this life becoming Leah's and our family's norm. We have worked hard to adapt over the past six years and some things have become easier. Thank goodness for that.

"It was hard, but also exciting because we got to know how it is to be Leah."

It makes me so happy to know that other kids are excited to get a better glimpse into Leah's life and the things she struggles with on a daily basis. They are excited! They want to get to know her and wonderful opportunities like this make that possible. 

In the end, the gratitude I feel for those - old and young - who participated in the Not Speaking campaign leaves me a little, well, speechless.