Selective Mutism

I wrote one of my earliest blog posts about my struggle with social anxiety disorder.  Anyone who has faced a similar struggle knows how painful that is, but it is probably even more painful to watch your young child suffer from anxiety, especially when no one seems to know exactly what’s wrong or how to help.  My daughter’s anxiety disorder is the biggest challenge I’ve faced so far as a parent.  My little family struggled for almost two and a half years before we even had a name for the problem.  As I relate this story, I’m going to refer to people outside my family by their last initials to protect their privacy.

Right around her second birthday, my oldest child, Kathleen, stopped talking to her grandpa (my dad).  Soon she was acting anxious around other members of our extended family.  She needed lots of time to warm up to her grandmothers and her aunts.  In fact, she would not even respond to cartoon characters who addressed her directly from the TV screen, and she got very upset if I suggested she should repeat a Spanish word after Dora or tell Daniel Tiger what she likes to eat for breakfast.  It was right around this time that I had baby Daniel and stopped working.  She wasn’t going to my parents’ house any more for daycare, and we were spending most of our time at home.  At her two-year well child visit, our family doctor, Dr. K., said that stranger anxiety was normal at this age, and she wasn’t concerned that Kathleen wouldn’t speak to her or cooperate with her examination.  This would have been in early August.

Kathleen on her second birthday

By the spring I was growing more and more concerned.  I spoke to the doctor about the behavior we were observing, and she recommended play therapy.  In fact, there was a therapist who shared office space with her medical practice, so she set us up with him.  Over the next few months, Kathleen slowly warmed up to playing with the toys in his office, but she didn’t make much progress with her anxiety.  She would not say “I love you” to anyone except her baby brother; she was attached to me at library story hour, and she HATED being complimented or applauded for a new accomplishment.

Speaking of new accomplishments, she resisted trying anything new:  sitting on a swing, drinking from an open cup, spitting out toothpaste instead of swallowing it, and most of all using the potty.  Oh my goodness, the battles we had over the potty!  There was only one new thing she grew to like the year she was three:  ballet class.  At first, she did not want to stay in the classroom without me, but after a few weeks, I was waiting in the hall with the other moms.  On the day of the recital I had a hard time convincing her to put on her costume but once we made it to the auditorium, she went out on stage and danced a little bit.  It was amazing.  She even let one of the volunteer moms take her to the potty before she went on stage!  (She was still wearing pull-ups all the time at this point.)

It was about two months after the recital that her therapist decided she didn’t need him anymore.  I was surprised.  Yes, she would now sit on her mat at story hour while I sat a few feet away, and she would even take a snack or a craft supply out of the story lady’s hand.  Yes, she would now sit on a swing and let me push her.  But she didn’t talk to anyone except a few close family members.  And he knew that.  He had been pressuring her to talk for months, insisting that speaking for herself was a life skill she needed.  He wouldn’t give her a sticker or a lollipop at the end of her appointment if she didn’t say yes out loud when he asked her if she wanted one.  She never said yes out loud.  We were approaching her fourth birthday, and she still wasn’t potty trained.  Well, she knew how to use the potty, but she chose not to do it.  She was supposed to start preschool in the fall.  And he decided she was done with therapy?

Dr. K. could also see that she was not “cured”, but she suggested that we see how preschool went and if that “brought her out of her shell.”  Luckily, she decided to start using the potty just after her 4th birthday, and she was able to start school.

School was another thing I had agonized over.  Should I send her to universal pre-kindergarten in our school district for free?  Maybe the routine of going five days a week would help her adjust?  But I just couldn’t see myself putting this little girl who didn’t talk on a school bus and sending her off for half a day.  I decided instead to send her to a little private preschool in a nearby town three mornings a week.  About two weeks before the school year started, our district announced that they had received a state grant and that UPK would now be full-day instead of half-day.  I knew I had made the right choice for my anxious child.

The preschool was wonderful.  The teacher and her assistant were caring and supportive.  They wanted to help Kathleen, but sticker charts and a promised reward of lunch at Wendy’s if she used her voice just weren’t working.  One day Mrs. S. pulled me aside and asked if Kathleen’s doctor had ever labeled Kathleen’s problem “selective mutism”.  No, I had never heard that term.  Mrs. S. had found it by researching how she could help my child.  That night I googled it and knew from what I read that this was Kathleen’s problem.

I found this website and started to learn about what was going on inside my child’s head and how I could help.  Dr. Elisa Shipon-Blum introduces selective mutism as follows:

Selective Mutism is a complex childhood anxiety disorder characterized by a child’s inability to speak and communicate effectively in select social settings, such as school. These children are able to speak and communicate in settings where they are comfortable, secure, and relaxed.

More than 90% of children with Selective Mutism also have social phobia or social anxiety. This disorder is quite debilitating and painful to the child. Children and adolescents with Selective Mutism have an actual FEAR of speaking and of social interactions where there is an expectation to speak and communicate. Many children with Selective Mutism have great difficulty responding or initiating communication in a nonverbal manner; therefore social engagement may be compromised in many children when confronted by others or in an overwhelming setting where they sense a feeling of expectation.

The first and most important lesson I learned was that pressuring Kathleen to speak would only increase her anxiety.  (You can imagine how angry I was at her therapist for using exactly the wrong strategy with her, but I’m trying to let that go now.  I’m working on forgiveness!)

The little girl in pink glasses who doesn’t talk

I gave myself permission to go back to speaking for her as I had done when she was a toddler.  If a friendly stranger complimented her dress or asked her how old she was, I modeled for her how to respond instead of waiting in silence for an answer that was never going to come from her.  So many people used to comment about her glasses that for about two years I felt as if my daughter’s identity in the eyes of everyone outside our family was “the little girl in pink glasses who doesn’t talk.” It bothered me so much that no one else could see a little person who loved to dance and sing and color and explore the outdoors.

But her preschool teachers saw her personality.  Even though she never spoke to them, she did speak to a few of her classmates.  When her class held a Christmas concert, she sang with the group.  One day her class played Musical Chairs and after she was out, she danced to the music while she watched the rest of the kids.  I spent these next few months checking in with Dr. K. while she worked on trying to find a local therapist who could help us.  She really wanted Kathleen to see a child psychiatrist who would be able to evaluate whether or not she needed anxiety medication.  I hated the idea of medicating a four-year-old, but I figured that a psychiatrist would know how severe Kathleen’s case was.  Ultimately, we weren’t able to find a child psychiatrist in our area who was accepting new patients, but at the end of the school year a social worker who visited the preschool regularly to work with another child put me in touch with a speech pathologist, who then connected me to a family therapist who was familiar with selective mutism and wanted to help us.

Kindergarten was looming.  Dan and I and six-day-old Rose went to parent information night for incoming kindergartners.  We had to sign up for a kindergarten screening appointment, and I thought, “What are we going to do?  Kathleen isn’t going to talk at her screening.”  So, I told the secretary that my child had selective mutism and didn’t talk to strangers.  She kindly walked me over to the the Assistant Superintendent for Instruction and Special Education and introduced me.  I told her that my daughter had not attended UPK in the district and that she had selective mutism.  Mrs. Sh. responded, “Don’t worry. We’ve seen this before, and we know just what to do.”  The tense muscles in my face and shoulders relaxed, and, especially with all those postpartum hormones swirling around inside of me, I almost cried.  She spoke to me for a few minutes and reassured me that Kathleen was going to be just fine in kindergarten.  She asked me to email her so that she could put me in touch with the speech pathologist at the elementary school, which she did promptly.  When I took Kathleen to the school for her screening the next week, I met with Mrs. A., the speech therapist, and Mrs. W., the school psychologist, and we soon had a plan in place for helping my little girl.

Over the summer Dan and I took Kathleen weekly to meet with Mrs. K., the family therapist we had found, who taught us all some breathing and stretching exercises for coping with anxiety.  I also took Kathleen weekly to visit the summer school class at the elementary school so that she could start to feel comfortable in the building.  She never talked to any of the adults or kids there, and she only whispered to me in their presence, but she did join in their games on the playground or in the gym and sometimes participated in their academic activities.

The speech pathologist had hand-picked Kathleen’s kindergarten teacher for us and when we met her in August at orientation, I was even more reassured.  She greeted each child with the warmest smile and seemed genuinely delighted to meet them all.  Mrs. G. was another God-send.  She had heard of selective mutism but had never encountered it before.  She researched and consulted with Mrs. A. and wanted to learn about Kathleen’s history.  One month into the school year a miracle happened:  Kathleen began to whisper to Mrs. G.  Then she had her first speech therapy session and whispered to Mrs. A., who was blown away.  By November the specialists at the school decided she didn’t need their services.  Slowly, whispering became talking quietly, and it spread to other adults in the community.  Finally, one day she spoke out loud to my dad.  That was the moment I’d been waiting for.  It took nearly three and a half years.

The family therapist, Mrs. K., wanted to take full credit for Kathleen’s success.  While I’m sure she played her part, I believe that a number of people contributed to her healing from this crippling anxiety.  Most importantly, she had warm and caring teachers in preschool and kindergarten who accepted her as she was and saw the person behind the symptoms.  God placed these people in our path.

Today Kathleen is almost seven and has just finished first grade.  She is soft-spoken but will answer adults who address her.  She still loves ballet and wants to sign up for soccer this year.  She enjoys reading, swimming, coloring, and playing with her dolls.  I still worry about her, and you can be sure I will email her second grade teacher before the new year starts to fill her in on Kathleen’s history, but I trust that she is going to be okay now.  Gratitude overflows my heart when I reflect on how far she has come.  She is one strong little girl.

Kathleen after her kindergarten graduation