I wrote this in June for another website. I’m reposting it here, in its entirety. It’s long, so settle in. Oh, it makes me cry every time I read it. You have been warned.
I have a daughter; her name is Emma. She is 11 and she is beautiful, smart and talented.
When Emma was five, she was diagnosed with Selective Mutism (SM), an anxiety disorder that robs a child not only of their voice but also of their self-esteem. A good way to describe it is like a fear of public speaking times a million.
I am not an expert on SM. I am writing this diary as a mother who struggled with doing the right thing for her child even when the right thing was not readily apparent. While SM impacted every aspect of Emma’s life, I decided to focus this diary on her journey in school since that was where she spent so much of her time and where key milestones were met. During the height of her treatment, we would drive 3 hours round trip at least once a week to meet with her behavioral therapist and/or her doctor.
At the time of her diagnosis, Emma talked to four people: me, her brother, Lily and her dad (in that order). Lily was her one “talking to” friend. They went everywhere and did everything together. I don’t know how she chose Lily or why but it worked. She didn’t talk to her grandparents, aunts, uncles, cousins, or neighbors. During a well visit, I mentioned it to her pediatrician and we agreed it was strange and would monitor it. We knew she could talk since she talked a blue-streak at home. Her language development was good and her vocabulary was age-appropriate.
Halfway through her second silent year at preschool, her doctor and I started talking and researching in earnest. It was obvious that whatever was wrong, intervention was necessary.
Intervention arrived in the form of Dr. Black, a psychiatrist who specializes in SM. Our first session was strange and uncomfortable. It was difficult to be taking our 5 year old to a psychiatrist but we were open and honest with the doctor and he quickly confirmed what we had already known – Emma has SM and a pretty severe case at that. We immediately set up a treatment plan, which included weekly behavioral therapy sessions as well as monthly sessions with the psychiatrist. Her main goal was to take people from her “Not Talking To” list and move them to her “Talks To” list.
Emma worked hard the summer before kindergarten with her therapy and made small gains. I had spoken with the principal before summer began and informed him of what was going on. Luckily, we had an established relationship with him since her brother was enrolled in school already. I discussed her condition with him and to his credit, he said to me: “I don’t know anything about SM but you tell me what she needs and we’ll make it work” and boy he kept his word over the next 6 years and then some!
Emma started school two days before the rest of her class. She was in the classroom while the teacher was setting up her room so she could feel more comfortable in her surroundings and could learn the lay of the land. We were incredibly lucky that for her, kindergarten meant a two room school house from the turn of the century that housed only kindergarten kids. I was able to be in the class as much as I needed to be for Emma’s comfort and read at least twice a week to the class. By the end of the school year, she had even added her teacher to her “Talks To” list. We followed that model the next year in first grade when she moved up to the “big” school.
The teacher was once again on board with me being in the classroom to read, although I spent less time in the class in first grade. Since she had some success in kindergarten she was able to move her teacher to the “Talks To” list and would speak privately to the teacher within the first few months and then in the classroom but only in a whisper. She worked on her volume but her voice never rose above a whisper that year. About half-way through first grade, we made the decision to start her on anti-anxiety medication and this helped. During the final month of school, when I was in the classroom reading, she would read to me a passage and I would then read out loud to the class. We took her progress as a victory and encouraged her to continue.
She met her two best friends during first grade, the twins – Abbi and Hailey who quickly became “Talking To” friends. Her friend Lily did not attend the same elementary school as Emma and I was happy that she was able to connect with school peers.
Second grade was more of the same but we introduced (with the teacher’s permission) a new technique. One day a week we would arrive to school early and I would read to Emma while the teacher worked in her classroom. After a few times, Emma began reading to me. Each session the teacher moved closer to us and eventually joined us at the table where I would read to them both. Emma would then start reading to us. After she was comfortable, I would start to move further away until one day it was just Emma and her teacher with Emma doing the reading. During the period of me backing away, we worked with Emma on her volume – I needed to hear her voice no matter where I was in the room; this took almost the full year. At the same time, I would be in the classroom one afternoon a week reading to the class. Emma would whisper the words and I would reread at an appropriate volume.
Kids are amazingly accepting of differences and Emma was accepted as herself, they didn’t care that she didn’t talk she was popular and was invited to play dates and birthday parties. That started to change in second grade as some kids started to exclude her and bully her a bit. We realized at that point that we had asked her peers to take a lot on faith and, with Emma’s permission, I shared her story with her class. After telling her story, I opened up the floor for questions. I was overwhelmed with the response of these second-graders. One little boy raised his hand and asked if Emma would feel more comfortable if everyone in class shut their eyes when she wanted to talk! Once they understood the problem, they were able to process it, and move on! Toward the end of second grade, I joined her small reading group at school to help her speak in front of a small group of kids and she did a good job. Her voice never rose above a whisper but she did it.
When Emma was preparing to enter third grade, I received a call from her third grade teacher who had spent the summer researching SM and how to effectively deal with it in a classroom situation. She was calling to invite Emma to tour her class in order to feel more comfortable and she wanted to speak with me so she could get on board with the current treatment and techniques. Third grade was incredible. I was out of the morning session within the first marking term; I still read in the classroom but limited my class involvement to one afternoon reading session a week. In the classroom, the teacher was working with Emma on increasing volume and by mid-year, the kids in the first row could hear her voice as she read with me.
Chorus also started in third grade and Emma loved it. We did the same morning routine with the chorus/music teacher and things were working great. She didn’t sing out loud during class but was determined to try out for a solo in the spring concert. This was a goal she set herself and I applauded her bravery. She tried out with the rest of her class and the teacher gave her a solo! She modified the initial solo into a solo in three parts and added Emma’s two friends. The other girls were prepared to sing her part in case she couldn’t do it.
The spring chorus had two shows, the afternoon show for the students and the evening show for parents and guests. I arrived at the afternoon show not sure what was going to happen but prepared for either event (or so I thought). About half-way through the concert, Emma was up. Standing at the microphone, she looked so scared and small and then she sang her two lines – clear as day. Let me tell you, there wasn’t a dry eye in the house; I’m tearing up as I write this. She sang it again that evening, although not quite as loud. The look of pride and relief on her face was unforgettable. I think that’s the moment when I knew, she would beat this!
For fourth grade, Emma asked to be placed with a certain teacher. Every year he organized a Veteran’s Day celebration and Emma wanted to participate. She also asked me not to do our morning routine with the teacher, that she wanted to try to acclimate to the classroom environment herself. I deferred to her wishes and the year started off fine. I was in contact with the teacher so he understood her treatment goals and I was always available if he needed to discuss things with me. Veteran’s Day presented itself and I was very excited to see what the students had planned. I wasn’t aware of Emma’s role or involvement since she was keeping it a secret. I’m glad she did because I was in for one of the biggest surprises of my life – Emma was the MC!
She was responsible for introducing the honor guard, the entire class, and each segment. By herself — in the middle of the auditorium — with a microphone and her determination and she did it! She was fine with an audience but she still struggled with personal relationships. She was still withdrawn and quiet, unless spoken to directly, with family and others but she could and would communicate, albeit grudgingly. Her circle of friends widened with two new “talking to” friends. Small victories and large, she was still on her journey and I still encouraged her, and cajoled her, and rewarded her.
By the middle of fourth grade we started weaning her off the anti-anxiety medicine since her doctor felt that she should try to do a year in her elementary school medication-free before moving up to the larger middle school environment. She handled the transition off the medicine with a few bumps but overcame them quickly and she really enjoyed the rest of fourth grade. By this time, she was answering in a more audible voice and participated in class discussions and other events. We were able to drop her visits to the therapist from once a week to once a month and with the doctor from every month to every three months. Needless to say, I was very proud of her and hoped that fifth grade would bring even more success.
Fifth grade arrived and again we skipped the whole routine of being in the classroom and she had a very successful fifth grade. She participated in class and she expanded her “talking to” friends to include almost the whole class and was really loving her life. She even did the morning announcements. We were able to drop her visits to the therapist to “as needed” and to see the doctor once every six months! She was still quiet and reserved most of the time and we figured that was her nature. She was able to communicate with the rest of the world without gripping fear and uncertainty, which was our main objective when we sought help for her. Her big test would come with middle school. Leaving the safety of elementary school and moving into the much larger world of middle school and everything associated with that move — the bus, older kids, teachers and staff that didn’t know her history.
I spoke with the adjustment counselor by phone and the elementary school counselor had made her aware of Emma. During our call, we decided to honor Emma’s wish that her “problem” (as she called it) not be common knowledge so she could start middle school without being known as “the girl who doesn’t talk”. She acclimated to the school fine; she liked the teachers and the work. She made honor roll her first term and was participating in class discussions and projects in a limited fashion. She was still quiet and reserved and began the annoying habit of hiding behind her hair. At Christmas, she got a cell phone and she became a texting machine! That thing buzzed all the time with names that I didn’t recognize. Her social calendar was filling up. She attended all the school dances. She joined the chorus. She really transitioned nicely.
In January, I noticed a new confidence. I let her experiment with makeup she had received as a Christmas gift. She had a light touch and, even though it wasn’t my initial plan to let her wear makeup in 6th grade, I allowed it since it gave her a boost of self-confidence and made her want to dress a little nicer. February and March flew by. One day in April she pulled her hair back off her face before school; she looked nice but I didn’t say anything. I was driving to school that day and when she got out of the car, she took it down before she went into school. Oh well, she tried. About two weeks later, she did it again. At that time I told her how pretty she looked and her response was “yes, I know, that’s what they told me in school yesterday”. I laughed and asked her had she put her hair up in school and she had.
All of a sudden, I had a giggling preteen girl concerned with her looks and her friends, and even boys! Her poise and confidence are stunning. She speaks to everyone freely and without pause. While my goal at the beginning of treatment was to give Emma all the tools and support she needed to become engaged and out-going, I always really thought she would continue to be quiet. I am overjoyed and awed to call her my daughter and she is my hero.
Reading over this diary it may appear that Emma’s journey was light and breezy. It was not. It was like a second job. Progress was frustratingly slow and anxiety-ridden. This was Emma’s battle and she won it. I was her guide and her advocate but she did the heavy lifting.
I have to acknowledge her brother, Dylan, older by 2-1/2 years. He made it easy for my husband and me to handle this. He didn’t complain when she was racking up the prizes for something he did as a matter of course. He was her voice when I wasn’t there. He stuck up for her and included her in everything. He would take no nonsense when someone decided she couldn’t be included since she wouldn’t talk. If it was an audible game, he made them change the rules. He is the most amazing brother and son in the world and I love him more than I can ever really express.
My husband, Pat, will tell you he did nothing. That’s a lie. He loved his daughter and supported everything no matter how little he understood it or how slow the progress.