Overcoming Fears: Living with Selective Mutism

As parents we see the struggles our children face every day. We know our children best and see things that others don’t usually see. We know their personal inner battles that they need to overcome. Not only in my personal life, but in my profession as a special education teacher as well, I see children climb those mountains that are invisible to others outside their personal circle. However, nothing pulls at your heartstrings more than watching your child face struggles that are naked to the eye and knowing how hard it is for them. But then, that one day, that day that you watch your child finally climb that mountain and break through those walls is truly a feeling like no other. It’s indescribable!

I want to share with you today something that I wrote about in my previous blog. Our family hasn’t shared this much with people outside of our close circle. Really only our family, closest friends, and son’s teachers know that he was diagnosed about two years ago with Selective Mutism. Maybe because many don’t even know what it is. You’ll hear people say “oh well that’s just him choosing not to talk”, or “oh he’s just shy”, but in reality it’s so much more than that. Selective Mutism is just starting to break the surface. Selective Mutism is not a speech and language disorder, but it falls under the umbrella of anxiety disorders. Today I’ve decided to share with you the struggles my son faces to hopefully start bringing awareness to others, but also (as always) I want to share with other parents to hopefully help them become more aware of this disorder and help them find some answers to struggles they may be facing. I want others to know that we are our child’s advocates and that by being silent to “protect”our children in all reality isn’t protecting them. The more we talk, share, confide, and support one another it’s in return going to help our children. Awareness brings strength.

So let’s start by going back to the beginning.

When my youngest was in preschool I started having concerns about his activeness in school, difficulty sitting still, focusing, and sensory seeking behaviors. I would talk to others about this, however I always got the “he’s a boy”, “he’ll settle down eventually”, “he’s just busy” and all the other phrases I’m sure you’ve heard before too. However, deep down I knew in my gut that there was more. I for a while listened to others and didn’t go with my motherly instincts. Which I regretted for quite some time; however we did eventually get somewhere. Fast forward three years, many tears and stressful nights, OT evaluations, PT evaluations, hearing tests, doctor’s appointments, psychologist appointments, specialists, school evaluations, and referral meetings my son was finally diagnosed with ADHD, sensory processing disorder, and anxiety. I thought finally we have our answers and can start doing what is needed to help him. We tried for a while to go the no medication route, however he still struggled and was falling further behind in his school work and academics. My husband and I made the difficult decision to try medication. This….this was the hardest decision we’ve had to make to date. I cried….and cried…and cried. I did not want to give my son medication every day. He’s still so little. “Am I a horrible Mom?” I thought to myself. But what broke my heart was my child coming home, in tears, crying that school is too hard. That he was always getting in trouble. That he couldn’t do it. That he had no friends. When your child’s heart is breaking you have to do something. I thought for us…for him we had to try it.

After various appointments with his doctor, a therapist, and a psychiatrist we decided on what medication to try. After a few weeks he came home smiling. He was happy. He was starting to excel in school, and HE COULD READ!! I was so beyond proud of this little boy.

So I imagine you’re thinking “what about the Selective Mutism?” Well you see it came a bit later. My son had started doing well in school, he was in first grade at this point and just started medication. His teacher’s hadn’t thought too much of him not talking at school because he was so busy and unfocused. However, now that Zachary was able to focus better and had started to progress in his school work his teacher started noticing he wasn’t talking. We started discussing it at parent teacher conferences and monitoring it. We discussed ways to prepare him to share at show and tell, or I could discuss with him before hand what was going to happen at school to maybe help him prepare. None of this was working . He’d get all excited to bring in a show and tell and share at school but then when I asked him later on if he shared he would say no. I was then starting to put pieces together. I was noticing how at home he wasn’t talking to unfamiliar people that would come over, he’d not talk out at stores or restaurants, and he’d hide at birthday parties when there was a lot of people he didn’t know. So I than reached out to his doctor and a few other specialists. We were able to quickly get in to see a highly recommended neurologist. She referred us to a specialist in Selective Mutism. I started researching Selective Mutism and started to see this was the missing piece. This was what my gut was telling me. I had called my mother and explained all the information I was finding and said “I think this is it! I think this is what we’ve been searching for!”

After seeing the specialist and having the necessary evaluations completed he received the diagnoses. This then started our journey in understanding this piece of our child and helping others know how to work with him. Selective Mutism is defined through the Selective Mutism Association as “(SM) formerly called Elective Mutism, is best understood as a childhood anxiety disorder characterized by a child or adolescent’s inability to speak in one or more social settings (e.g., at school, in public places, with adults) despite being able to speak comfortably in other settings (e.g., at home with family).” Despite this definition stating that it is seen in children and adolescents it is also seen in adults. As we moved forward from finally having a diagnosis we met with his teacher and the special education teacher to adjust his 504 plan to reflect his new diagnosis and how within the school setting we can best meet his needs.

With our support our son has begun to feel more comfortable in certain social situations. He has had some amazing teachers that have worked well with him and accommodated him throughout the school year to build up his confidence in speaking in larger groups. They’ve been open to learning about his needs and listening to suggestions. This made a world of difference for him and us as his parents.

Seeing how much Zachary has grown since being diagnosed has been truly the best as a parent. With the understanding of his needs, not pressuring him, and allowing him to take the time he needs to adjust to new people and situations has made a huge difference. People often think that not speaking in school or public settings is a choice for young children, however their anxiety becomes so intense that they truly can not make the words come out. We had signed our son up for karate classes about a year ago. When he first started he was so nervous despite his excitement for his new adventure. We started with a one on one class to ease him into being in a larger group. I felt this would build his confidence and he could get adjusted to the surroundings and his new Sensai. Over the course of 2 months and his hard work I watched his confidence grow. He was first so nervous to talk or “Ki I” when they punch or kick, but he then started to develop a voice and a new sense of confidence. He became more in control of his body, and learned so much so quickly. I think back now to the day he had his first belt test where he was tested on the 5 combinations/skills he had learned. He was taken into a back room with the Master (whom he’s never met) and was evaluated on his skills. As I watched from afar through the window I was filled with nerves and had tears streaming down my face. I saw my little boy that has been so anxious over the years stood so confidently. A boy that was afraid to speak to others that are unfamiliar was speaking and performing with confidence and assertion. I could not have foreseen this over two years ago, but now he has found something that is helping him control his impulses and learning how to cope with his anxious feelings. The Selective Mutism hasn’t gone away, but we’re learning how to help him realize that he doesn’t have to be afraid. That he is strong, smart, confident, and an amazing little boy. Our son is no longer in karate, however I’ve seen what he learned from those classes carry over into soccer and relationships with his peers and teachers. It’s amazing to see how he’s continuing to grow.

As parents we are going to face many challenges with our children. We are going to be put in situations we could never anticipate. I never expected when my little boy was born 5 weeks early that I’d be facing these challenges today. I sometimes feel that it’s more difficult having a child with a disability that is invisible to others because often they look at them as misbehaving or naughty because they can’t see the struggles they are facing on the inside. I’ve learned that in these situations I need to be patient, speak with confidence to support my child and educate those that don’t know. I’ve learned how to be strong when I didn’t think I could be. I’ve learned to be an advocate for my children when others wont be. I’ve learned to trust my gut over the years when I knew there was more and others thought I was crazy. I’ve learned that my children will take me on one of the most difficult journeys in my life, but will give me the most incredible rewards.

(Original Post January 2021)

God Bless xoxo

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