October is Selective Mutism Awareness Month

October is Selective Mutism Awareness Month

She talks. A lot. Sometimes.

Sometimes she can’t speak at all.

This communication disability is called selective mutism. It’s really an unfortunate term for the condition because the word “selective” sounds like a choice. It’s not a choice. There are times when she cannot force words to come out of her mouth.

selective mutism awareness month

I haven’t talked a lot about my daughter lately, and especially not about her mental health issues. I’m very careful about violating her privacy, especially since she reached the teen years. But this time, she came to me and asked me to write about this issue, and her experience.

“Most of the time,” she said, “It would be easier for me to just speak than it is to deal with people who get mad when I don’t talk to them. I don’t want to be mute.” Teachers, principals, even friends get angry with her when she doesn’t respond to them with spoken words.

Old friends she hadn’t seen for a while insist they know she can talk and get irritated with her silence, often even assuming that she is mad at them, or even that she thinks she’s too good to talk to them.

So, what is Selective Mutism?

Selective mutism is a rare disorder, a communication disability, affecting less than 1% of kids. It is related to anxiety disorders, and often co-occurs with autism and hyperlexia. There really isn’t a lot of information on this condition, but it is one in which an intense anxiety reaction causes a freeze response and prevents the individual from speaking aloud. Sometimes this situation can prevent communicating altogether, but more often sign language, gestures, and writing can be used to respond.

This becomes especially problematic when others become angry and demand a verbal response, which amps up the anxiety even more and makes the problem worse. Traumatizing someone for having anxiety wont reduce their anxiety.

Selective Mutism keychain and other items available at my Zazzle shop. These items allow non-speakers to convey their communication disability.

How can I help?

Interacting with someone experiencing selective mutism can be very much like interacting with someone with a stutter. The most helpful thing you can do is to exercise patience. It can be frustrating, I know. It’s very difficult to remain calm while you’re waiting for a response, but the more demanding you are, the more frustration you demonstrate, the more you behave as though they’re being defiant, the worse the situation gets. Allow them to respond on their own terms and you’ll actually get more information than if you demand that they speak.

  • Be kind.
  • Be patient.
  • Pay attention to their non-verbal behavior.
  • If you think you understand but you’re not sure, you can ask. “I think you’re saying you want to go home. Is that right?” Then they can nod or shake their head in response. Based on that response, you can ask more questions.
  • If you have writing implements available, you can offer those. My daughter keeps a pad of sticky notes and a pen with her at all times. When people allow her to respond that way, they get the most complete and accurate response.
  • Share this story. The more people understand what selective mutism is, and how they can help (or at least not make the situation worse), the more it makes the world a little kinder and helps people living with this condition.

The simple act of being aware of selective mutism and understanding that this communication disability is not a choice, makes a difference, even if you do nothing else.

Making Friends with My Grief

Making Friends with My Grief

What was my grandpa like?

I wasn’t expecting the question. I paused the TV and thought a moment. It occurred to me that I haven’t told her much about my father. He died from cancer before she was born. The proximity of his death to my own cancer diagnosis made it even harder to talk about.

I told her about how he always laughed at his own jokes, that his belly laugh made his whole body bounce up and down. And if he was sitting, his feet stuck straight out in front of him for the duration of the laugh.

I told her about how he loved to play guitar and sing to us, and he made up the most ridiculous songs.

I told her how he was often considered the smartest person in whatever room he was in.

I told her how we used to tease him about being short, and how he would tell his friends I was 4’20” rather than an inch taller than him.

I told her how he embraced our interests, how he dove in head first to whatever we were doing. When we got into theater, he memorized Shakespeare right along side us. When we played soccer, he trained to become a linesman. After my brother married a woman from Russia, my dad learned to speak Russian. He was all in.

I told her how he loved sports, how when I went home for a visit in ’99 I found him in his ref uniform watching the US Women’s team trounce China in the World Cup. I watched him flash a yellow card at China on the TV.

I told her how he was one of the Palmer High School football team’s most loyal supporters. Long after all his kids had graduated high school, he was still the keeper of the Moose Gooser, a cannon fired each time the Palmer Moose scored. He even took that cannon to away games.

She asked me if her grandpa would have liked her. “Oh, my, yes,” I said. “He would have loved you. He would have enjoyed your wit and your laugh. He would have loved playing chess with you. He would have loved that you’re learning French and Russian. He would have marveled at the amazing young woman you are growing into.”

My dad cared deeply about a number of things, threw his energy into a lot of things, but I suspect that, out of everything, being a grandpa was his favorite.

My girl and I laughed and cried at the stories. She snuggled and held me tight. We both grieved his loss and the fact that they never met. But mostly, we experienced my Dad.

She wanted to know how he died, and I told her about how his friends came over with banjos and guitars and played the bluegrass music he loved so much. I told her about how they played “I’ll fly away,” and how that song was even more special at that moment.

I’ll fly away, oh glory I’ll fly away, in the morning when I die, hallelujah by and by I’ll fly away

Then when his friends said goodbye, he got tired and went to sleep with my mom and brother sitting by his side. In the morning, he flew away.

Sharing this moment was a gift for both my daughter and I. We haven’t talked a lot about death or grieving, and this opened the door for some deeper conversation. This process was healing for me too. I’d forgotten how it can feel good to talk about someone you lost.

My father has been gone for 14 years, but for a few moments last night, he was right there with us. I felt like, in a way, I got to introduce them to each other.

The grief of losing him is still there, but it’s different now. The time helps, the talking helps, too. The grief is something that I carry forward with me. It has helped shape me. I’ve grown since his death, and that grief was a part of the growth. I would be a different person without it.

That’s not something I would have been able to hear or contemplate shortly after his death, and please don’t say that to anyone in the early stages of their grief.

I shed many tears last night. I cried again after G went to bed. I do miss my dad, I miss the relationships we might have had. But the tears were bigger than sadness. There’s beauty in this story. I experienced a sense of awe when sharing this story with my daughter. It was moving, it was deep, it was the same kind of tears we experience when watching a masterful performance, or viewing great art, or hearing a story of profound kindness. It was healing and transcendent. I’m not done grieving my father, that’s not something you finish. But I’m no longer afraid of the grief. I’m making friends with it, and that starts with talking about my dad.

A conversation with my daughter about the grandfather she never met helped us both heal.
Here’s to the Moms – a Celebration of Motherhood

Here’s to the Moms – a Celebration of Motherhood

To the mom who brings her child their own cup cake to a kid’s birthday party:

I know you get looks from the other parents, but I understand.

Food sensitivities are nothing to mess with.

I know you stayed up late working on that cupcake. You made it extra pretty.

You brought it, not because you were trying to make your child feel excluded, but just the opposite, you wanted her to be a part of this party, and you wanted her to have a treat, just like all the other kids. But you had to make it safe for her.

It’s not easy to see your kid on the outside, and I promise you, I will not take your kid’s special diet lightly.

To the mom who’s wondering when she will start to feel like a grownup and have all the answers:

I’m sorry, but we only have all the answers about how other people should parent their kids.

The moments of feeling like a grownup are rare, but most of the time you have the bills, the responsibilities, the mouths to feed, the guilt about your own shortcomings, and conflicting advice from all the usual suspects, but not so much with the answers.

You feel like you haven’t quite arrived at being a grownup, until one day you wake up and realize you’re old.

Of course, feeling old is no guarantee you’ll have the answers. Same old questions, new arthritis.

To the mom of the toddler throwing a tantrum in the middle of the grocery store:

I’m sorry I was staring. I promise I wasn’t judging you; I’ve been there, and I was reliving it. The world is full of people who think the wailing and kicking are because the parents always cave, but I know that that little fit was because you didn’t cave.

Or maybe it was just because the store was out of Spiderman toothbrushes and the Incredible Hulk just wouldn’t do.

I’ve encountered so many people who believe children should be seen and not heard, and for that matter almost never seen except for when they’re being perfect and adorable. They would never admit they believe this, but they give themselves away… “why don’t they just take the kids home when they fuss?” people wonder.

But I know.

I know you and your children would starve if you took the kids home every time they threw a fit.

To the mom who is tired:

The mom who will go to bed soon, but first she has to make sure the clothes make it from the washer to the dryer before they sour, load the dishwasher, and get the kid up for a midnight potty so she doesn’t wet the bed…

I know you’ve been told before that you need to take care of yourself first, so you have the strength to take care of the kids.

I also know you’re just going to keep doing what you feel like you need to do.

I hope, sometimes, you get the rest you need.

The kids will grow, and soon they’ll be able to pour their own bowl of Cheerios. They’ll destroy the kitchen in the process, but at least you’ll get to sleep in for 20 minutes or so.

To the mom who is living with cancer or another life threatening or chronic condition:

I’m right there with you.

I know what it’s like to wonder how much time you have with your kids.

I’ve listened to my baby cry, unable to pick her up and waiting for someone to come bring her to me, feeling helpless and maybe a bit useless.

I’ve had those dreams that ended with someone else raising my child.

I’ve wondered if I was enough.

I’ve wondered if I could hang on long enough that she would be old enough to have memories of me. I’ve wondered if it would be easier for her if I didn’t.

I worried that I was letting her watch too much TV, but let me tell you something, TV is awesome. Besides, SuperWhy taught my daughter how to read.

Now I worry about my relationship with my own patchwork body, and how I can help my daughter develop a healthy body image when I still feel like my body betrayed me. My husband and I joke about my million dollar body, but I still miss those missing parts, I’m still anticipating the next body part failure.

To the mom who apologizes to her kid after losing it:

Thank you for showing your child that adults make mistakes too, that making mistakes and learning from them is part of being human.

Thank you for teaching your child that what you do after a mistake is often as important, if not more important than the mistake itself.

Thank you for modeling that behavior. It’s so awesome for kids to have a real live example, so they know what a meaningful apology is supposed to look like.

To the mom who is lonely:

I’m lonely too.

We’ve got the kids, but there’s only so far I can follow a conversation about My Little Pony or Minecraft before I really need to talk to another adult, and my husband doesn’t get home till late.

How do you connect with the parents of the other kids at the playground? Even when your kids hit it off and you have a nice conversation, there’s that awkward moment where you work up the nerve to ask about a playdate.

Sometimes you’re just not able to work up the nerve at all, but when you do, It feels like you’re asking the mom out on a date. You give her your number and wonder, will she call?

And they don’t always call.

Sometimes you meet up and it’s awesome, up until it’s time to go home and then your kid is the one who throws the epic tantrum that can be heard from 3 blocks away.

But every once in a while, you make a friend.

To all these moms, and to all the other moms out there:

Let’s stick together, lets have each other’s backs. Raising humans is hard, it’s exhausting, and it’s often a thankless job so let me just take this moment to say thank you.

I hear you.

I see you.

Thank you.

Listen to Your Mother

I originally presented this piece at the inaugural Listen to Your Mother show in Seattle, 2015.

You can catch the video here.

Creating fun

Creating fun

My girl has a knack for creating fun wherever she goes.

There are several different play structures at this park, but where does she want to play?

Bike Rack - creating fun

on the bike rack.

bike rack at the playground - creating fun

I love this playful, joyful approach to life. I relish in it. It makes me happy to see her explore things in new ways. I love things like bike racks being used for other than their intended purposes. This is where creativity and invention kicks in.

bike rack at playground - creating fun

She’s getting so big now – taking on more challenges, like tree climbing.

tree climbing - creating fun

She’s growing so strong, so tall, so confident…

stripes and tree - creating fun

I hope she doesn’t outgrow her sense of playfulness and whimsy. I hope, in the life before her, she continues to find creative ways (but not too dangerous, I’m still a mama bear) to have fun.

The habit of stress

The habit of stress

My To Do list for today has 32 items on it. This is ridiculous. I know there is no way all 32 items will get done today. I also know that I will spend an unreasonable amount of time fretting about the items that will not get done today.

If I really power through and don’t lose my focus too often, I might get 12 of those items done. Maybe. But many days I spend more energy figuring out HOW I will get things done, more energy stressing about getting things done, than actually getting things done.

Relax release the stress

Worrying plays a big role in the amount of stress I carry around. I worry about whether the cancer will come back, I worry about the well being of my child, I worry about how we will pay the rent. But worrying only increases the amount of stress that I carry, and it does nothing to help solve the problem. Sometimes I think I’m just worried and stressed because I have become accustomed to being worried and stressed. (more…)