I want to share with you today something that I've not spoke much of to people outside of our family or our close circle. Really only our family, closest friends, and son's teachers know that he was diagnosed about a year 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 with people becoming aware of this anxiety disorder. Many think because it has to do with talking that it is a speech and language disability, however it is a severe anxiety disorder. This is why today I've decided to share with you the struggles my son faces to start bringing awareness to others, but also (as always) I want to share with other parents. 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. 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 gut. Which now I'm regretting, 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 you're thinking "what about the Selective Mutism?" Well you see it came a bit later. Zachary 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 much. 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 a 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 is was the missing piece. This was what my gut was telling me.
After seeing the specialist for Zachary's evaluation he was diagnosed. This then started our journey in understanding this piece of our child and helping others know how to work with him. Many think that Selective Mutism is a speech and language disorder but it's actually a sub category of anxiety. Selective Mutism is defined through the Selective Mutism Association as "Selective mutism (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.
Zachary with our support has begun to feel more comfortable in certain social situations. Last year he had an amazing teacher that worked well with him and accommodated him throughout the school year to build up his confidence in speaking in larger groups. She was open to learning about his needs and listening to suggestions. This made a world of difference for Zachary and us. Which brings us to today. 2 months ago Zachary started karate classes. 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 past 2 months Zachary has been working so hard. I've seen a passion in him for this sport that I've not seen before. He was first so nervous to talk or "Ki I" when they punch or kick, but he now has started to develop a voice and a new sense of confidence. He's becoming more in control of his body, and learning so much so quickly. Just last week he had his first belt test where he was tested on the 5 combinations/skills he's 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 stand 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 forseen this 2 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.
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 down the road. I sometimes feel that it's more difficult having a child with a disability that is invisible to the eye because people often 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.
~xoxo
Mrs. L
