Selective what?! Yeah, this isn't the most popular DSM diagnosis, and actually, not one I have studied much more than a week or two in grad school. However, it recently hit me right in the face. An article came out in my parents’ local newspaper about a child diagnosed with selective mutism and her and her mother’s mission to inspire others to be brave in overcoming such adversity. Upon further investigation of this amazing story, I found the child’s mother was none other than my old studio dance teacher and one of my biggest mentors when I was a child. I immediately reached out to her and asked if she and her daughter would be willing to share more about their story. She immediately agreed.
The current DSM defines selective mutism as: “Consistent failure to speak in specific social situations in which there is an expectation for speaking (e.g., at school) despite speaking in other situations. This disturbance interferes with achievement and communication.” - Great, very helpful DSM (please note sarcasm). Let’s unpack this a little more.
First, this diagnosis is only attributable to children. It does not exist for adults. Rather. there are other diagnoses that can be used when adults change their vocal communication. It can also be pretty broad. Selective mutism can take place with other children or with adults. It can take place at home, at school, or other social functions.
Selective mutism often goes hand-in-hand with social anxiety, i.e., the function of the child’s anxiety is staying mute during specific social interaction. For some, this may come off as excessive shyness, but for others, it can be totally debilitating. Some children with this diagnosis are able to use nonverbal cues or even small grunts to get things through, but other children are completely stunted in communication in particular situations. This gives parents, teachers, caregivers, even doctors a hard time in diagnosing children with selective mutism. You might think, well just give the kid an intelligence test or record them talking with a parent at home. Not that simple. The child’s anxiety may exhibit itself when they know a camera is on or when taking a test (hello, test anxiety! It’s a thing too). Although there are cases where language difficulties result in selective mutism, this is not always the case, as we will see with Nika. If it were the case, many of these children would be diagnosed with a different communication or learning disorder. However, selective mutism is most commonly co-morbid with anxiety disorders. Selective mutism is only diagnosed in .3-1% of children at this time, making it super rare, and difficult to find research and preventative treatment. Most research currently states that children “outgrow” the mutism, though other symptoms of social anxiety will remain.
Real Life: Jana & Nika
Meet Jana. She is a proud wife, and mother of a college freshman, high school junior, and seven-year-old Nika, who was diagnosed with selective mutism, social and generalized anxiety. As I mentioned before, she ran (and continues to run) a local dance studio I attended for at least 10 years as a kid. There are about 100 different songs that anytime I hear them, remind me of Jana (mostly songs by our local favorite: Prince). Jana is, and has always been, insanely creative, supportive, energizing, and inspiring. Going to dance classes was one of my favorite parts of my daily childhood routine. No wonder she is so open to sharing her and Nika’s story with me.
I met with Jana and her daughter Nika at a local coffee shop one sunny summer Sunday. While talking about our own lives and catching up, we talked a lot about Nika and their experience as a family. While our conversation lasted an amazing three and a half hours, Ill try to sum up the important parts.
Me: Hi Nika.
Me: How are you?
Nika: I’m good.
She seemed to respond as if it was a learned conversation.
Jana, to Nika: Do you want a hot cocoa? You can come with me to order or you can sit at the table with Angie. What would you like to do?
Nika: Come with you to order.
Jana: OK, it’s totally up to you!
Nika was very soft spoken, but seemed expectant of me to approach her. I could already tell that Jana tries to meet Nika’s needs while creating balance of her being a kid and not swooping in to save her. This was so great to see. Not that it surprised me at all.
Jana: Alright Nika, remember, Angie wanted to ask you some questions about camp and your rock project. Is that okay?
I asked Nika a few questions about her newspaper story. One aspect of the story was her camp experience. Nika and her family attended The Brave Bunch, a camp held by the University of Miami for children with this diagnosis around the world, a camp Nika and Jana fondly refer to as “Brave Camp”. The second part was Jana and Nika’s project,This Life Rocks, where they and others paint rocks with inspirational words and sayings, and hide them for people to find.
At first Nika is soft spoken, but once her mom joins in the conversation her sassy adorable self comes out.
Me: What was your favorite part about Brave Camp?
Jana poses a new question: What did you like the least about Camp? What was the activity you hated?
They proceed to tell me a funny story about basketball.
Me: What is your favorite part about painting the rocks?
Nika seems to be a little more warmed up now: When people find them, she smiles and replies.
Me: That’s so great! Who came up with the idea of the rock project?
Nika giggles and points to her mom.
Jana laughs and points back to Nika. Jana tells me that Nika has always been into crafts and projects, and they would paint rocks now and again. So really, Nika came up with the project; Jana just suggested they hide them for others to find. With the help of some friends from the Spread Sunshine Gang, it became bigger than maybe they were expecting.
After a few more funny stories I notice a few things: 1. Nika is hilarious, has an infectious laugh, and seems to have a great memory; she loves telling funny stories. 2. She looks up to her mom, a lot. Just like any other seven-year-old daughter, but not just for approval; Nika needs a lot of reassurance that she is right. This is part of her diagnosis that Jana and I talk about later. 3. Jana is so in tune with Nika. Again, no surprises. She was in tune with 50 seven-year-olds during our dance recitals.
Nika’s dad and Jana’s husband, Rico, comes to pick up Nika so Jana and I can talk in more detail. I thank Nika for talking with me, she says Thanks, smiles. She takes her dad’s hand holding a still full cup of hot cocoa, the whip cream now missing, she licked that up first. A girl after my own heart.
So Jana tells me more:
Nika was always a shy kid. She was clingy with her parents, and even as an infant, loved to be held. But she wasn’t the kid who would cry when her parents left her at pre-school (that was me, for the record), rather, she would sit in the corner, totally silent. Sometimes she would shake, but she rarely, if ever, said a word. If she did engage, it was only after a teacher asked her to. This is an important aspect, Jana pointed out. Someone has to ask Nika, with just the right verbiage, to get her to engage with them. Nika would often sit alone on the playground, until one day, a boy came up and asked her: Do you want to play? Can we be friends? Apparently this was the right thing to say because Nika was really excited to have a new friend.
During Montessori school, Jana had the thought that maybe she could homeschool Nika like she did for a short period with her older children. Nika can talk, but she looks like she’s about to throw up anytime someone else talks to her, Jana explained. Kids literally introduced Nika to their parents as the kid who doesn't talk at the open house. Jana was torn as she wanted Nika to socialize, but didn't know how to help.
Things like this are what set Jana off to discover what was going on with Nika. She wasn't shy - she loved to play and sing and dance and talk. But in a new situation she would freeze up. Jana explained this as a “deer in headlights” look. When a teacher would ask Nika a question, she would just stare at the teacher and not answer. Jana was frustrated too because she knew Nika knew the answer. When Jana asked Nika about it, Nika would say: I want to talk, but it won’t come out - my body won’t let it.
Jana first heard the term ‘selective mutism’ at a dance function (where else?). She was judging a completion when a fellow judge said she had to go outside and take a call from a friend’s daughter who has selective mutism.
From there, Jana starting looking up more information online; the more she learned the more confident she became that this is what was affecting her playful child. After searching for a child therapist (there is only one selective mutism specialist in MN and she has a wait list), Nika was diagnosed with selective mutism and anxiety, and Jana felt relieved to have an answer.
Though networking and research, Jana found out about The Brave Bunch camp in Miami. She described it as a wonderful opportunity for her, Nika, and the whole family. It was an intense intake process. Jana had to play with Nika with an earpiece telling her what to do every second while therapists watched through a two-way mirror. Eventually multiple therapists would come in and slowly interact with Nika. One of the requirements of the camp program was that Nika communicate with at least two of the camp counselors, which she did.
The Brave Bunch camp, a day camp at Florida International University for children diagnosed with selective mutism, proved extremely helpful for Nika. She learned skills to help her anxiety, like “pizza breath”, slow breathing like you are smelling a pizza, and “chipmunk breaths” where you hold your breath and let it out really slowly. They learned nighttime meditations that they still do today (Nika makes sure of it). And every day Nika would need to say three things she was proud of. This is what was most challenging to Nika.
As I mentioned when I was talking with Nika, she looks to her mother a lot for validation. Jana echoed this: she has a hard time seeing her own ideas as valid. Jana had anxiety as well, so it was easy for her to empathize with those symptoms, especially the physical ones, but this was hard for both of them. At one point during the interview Nika sneezed. I probably wouldn’t have even noticed, but Jana immediately praised her, Great job Nika! Gave her a hug, and pulled out an app on her phone so Nika could add one brave point. Jana later pointed out that Nika never sneezed before camp. This adorable, fun-loving, sweet girl didn’t even see her own sneezes as valid.
At the end of camp, Nika received an award: most sophisticated speaker. The whole family went to Harry Potter World after the week long camp to celebrate. Immediately Jana noticed a difference in her daughter: she was actually asking her parents for things she wanted, rather than just staying silent. The camp proved helpful for the whole family.
Heading back to our small Northfield town, Jana was nervous: Would Nika just go back to how she was before camp? Should we get her in a different school? Will she continue to driving to the cities once a week for therapy? These are still questions they are trying to figure out the answers to, but for the most part, Nika is unashamed of therapy, has a great relationship with her new teacher, and is doing really well!
Along with the skills she learned at camp, Nika brought home a love for scavenger hunts. On the last day, Nika and the other kids went on a scavenger hunt in the mall. Nika brought this idea home with her and sends others on hunts for her rocks (see her Instagram: @thisliferocks). Her mom still sends her on scavenger hunts around town as well. Nika has to ask the librarian or police officers questions to get her next clue.
Nika: Do you have a clue for me?
Librarian: Yes, but first can you tell me what your favorite book is?
Nika: Yes, it’s Puppy Place.
Librarian: Thank you! Here’s your clue.
Nika is learning more social interactions here than just a clue.
Jana goes to great lengths like this every day to help her daughter, so of course I had many questions about her feelings as well.
Me: How did you feel when you first noticed things were hard for Nika?
Jana: I felt like a failure when she was younger. I spent my whole adult life telling kids how awesome they are, and now I can’t do it for the one person I love the most? I know it was irrational, but I would ask myself: Is it me as a parent? Is it my parents? Does it matter what I say to my kid? It’s totally heartbreaking that this might be out of my hands. It’s never hard to reach out for help, but it’s hard to see Nika with this much anxiety.
Me: What are you scared of most?
Jana: I’m scared for her teen years. My goal is to just give her as many coping skills as I can: therapy, exercise, creative outlets, eating right. This has made me a better parent. I see other kids and see what really matters. I have more sympathy. There are days that are tough, really tough, but she’s a good kid and now I understand more. She used to throw horrible fits and now my family and I remind each other: Nika isn't angry - she's scared; she's acting out of fear and frustration.
Me: And what is normal anyway? . . .
Jana Laughs: Exactly.
Me: What is the challenge right this moment?
Jana: I’m still trying to find the best way to give Nika faith in her own ideas. Just look at what she did when you asked her about the rock project, she pointed to me. I want her to take credit and be proud. She knows that she needs to keep working and she does, but we still have a code for when Nika really can’t talk, and I trust her.
Me: I wasn't sure what to expect, but I am so glad Nika spoke with me briefly. How did you encourage her to do this?
Jana: Since the day you asked me (about two weeks ago) I have been prepping her: Angie wants to help people; can you talk to her too? Every day I reminded her that this was going to happen and this morning explained why again. I think this helps her a lot. Had we just run into you at the coffee shop, I don't think she even would have said, Hi.
Me: So what is your take away from all you have learned throughout the last year?
Jana: To tell Nika: It’s OK if it’s not easy for you. My goal is not to mow the grass for her, but say, Yep, the grass is high. Get your shoes on; we can do this. Sometimes I feel judged for taking my daughter on crazy scavenger hunts around town, but then I remember, this is for her, not me. Not only do I love her, but I'm responsible for how this person learns to cope and see the world - not fully - they are who they are - but you have some obligation along with that love. We do our best. We’re only human. Nika has helped me see the important things in life.
Jana and Nika had a lot of inspirational one-liners like this. As a take-away from this interview, we all want to share them you:
You’re part of the world, and the world is a good place.
You’ve done this before, you can do it again.
You were made to do hard things.
Jana and Family’s Blog:
Diagnostic and Statistical Manual of Mental Disorders. Copyright 2000, American Psychiatric Association.
Selective Mutism Foundation. Copyright 2017. SelectiveMutismFoundation.org