Did you know that Selective Mutism affects nearly 1% of the general population? We often see SM in conjunction with Autism, Sensory Processing Disorder and ADHD. Recently, a friend of mine took advantage of her social media accounts to raise awareness about SM during Selective Mutism Awareness month and I learned that it is often a stand-alone condition. Thanks to Jennifer Pavelko for sharing the story of her family’s journey with Selective Mutism
In June of 2005, we welcomed a 6lb 15 oz beautiful blue-eyed boy. His hair was so blonde it was almost see-through. There was nothing abnormal about this pregnancy; no complications or concerns.
When I went back to work after my maternity leave, I was able to take him with me a few days a week. I completely loved this because I didn’t want to leave my first born in daycare. He was with me 3 days a week, so I was able to bond with him a little more. As he got a few months older, he was not happy if someone else tried to hold him. He would start to cry as soon as I tried to hand him to someone. I would hear “you must hold him too much” or “you are with him at work, so he is just used to you..” I didn’t think anything about it because he was my first born so of course I am going to spoil him.
As he got older, we noticed little things like he would not say, “Hi” to people he knew -- even family who he was very familiar with. We chalked it up to him being “shy.” It was not until preschool when teachers mentioned that he would not talk to anyone that we became slightly concerned. He talked fine at home, so we weren’t sure why he wasn’t talking at school. One of his teachers mentioned Selective Mutism. At first, I thought she was joking and thought to myself, is this like Selective Hearing? I started to research it and found that this was a real condition and every symptom that was listed matched my son’s characteristics.
We talked to the pediatrician, and they recommended a psychologist. She worked with him weekly, and we continued this for a few years. She found that when he was having fun he would talk. He would respond when she asked him a question. The anxiety wasn’t there at those times. This was a start, but he was not “cured” by any means.
I cried thinking of him going to elementary school. He would not talk to anyone. How would he let them know he had to go to the bathroom or that he was sick? There were several times that he did have an accident at school and I would have to take a change of clothes.
At his kindergarten orientation, I wanted to make sure that the teacher knew what was going on. I cried telling her. The teachers were not educated in Selective Mutism. No one knew what to expect or how to handle it.
We were eventually able to get a diagnosis from the psychologist: Selective Mutism with Oppositional Defiance. He wasn’t defiant, but in order for the insurance to cover our visits to the psychologist, we had to add that diagnosis because the insurance companies, like most of the population, don’t know what Selective Mutism is. Having the diagnosis allowed us to obtain an IEP for him at school. This gave him accommodations at school, although no one knew what would help. He was allowed to have a friend that could relay what he said to the teacher or use cards instead of speaking. We could video tape him at home reading out loud so that the teacher could see that he could do the things the other children could vocalize in class. He also met with the guidance counselor at first and then the speech therapist to get comfortable with another adult. There were baby steps in his journey that we could see but someone else wouldn’t even notice.
It wasn’t until 3rd grade when he started talking in class. This was because of his teacher that year. She was a family friend that babysat for us in the summers, so he knew her well. I give her credit for getting him comfortable at school. All the kids knew that he needed a friend to help him answer when he was called on, so they wanted to be his voice. She knew that he could be his own voice and he started answering questions on his own in her class. When it was time to review his IEP, although he was talking at that point, I asked to keep the IEP for one more year and hoped that his voice did not get lost. The school agreed and understood. Not all schools are as cooperative.
In 4th grade, he maintained his progress. He would answer questions when asked and the teachers were satisfied with his involvement in class. We agreed to not renew the IEP at the end of 4th grade. He has not had an IEP or any type of accommodations for the last 7 years. He is a junior in high school and has kept a 4.0 GPA so far. He loves all kinds of electronics and video games.
There have been huge improvements in his comfort level since he was a toddler. He is much better in a one-on-one situation, not a group. He dislikes drawing attention to himself. He now responds to questions, where before we would respond on his behalf. It is so hard as a parent to know that your child has so much anxiety that they can’t even talk. We can see on his face when he wants to say something, but the words just won’t come out.
Selective Mutism is an anxiety disorder. The person may seem extremely shy or withdrawn, avoiding eye contact and remaining motionless and expressionless. Selective Mutism affects less than 1% of children in the US according to raredisease.org (National Organization for Rare Diseases). Many people go undiagnosed or misdiagnosed.