Monday, August 24, 2015

My Child Has Special Needs and I Am Tired of It! Living With Selective Mutism.

My oldest child was born with Selective Mutism.  She was not diagnosed until she was in Junior high school, because just like many pediatricians, doctors, teachers, and even therapist, I had never heard of Selective Mutism before. My daughter just seemed overly shy while out in public places. Selective Mutism is a severe anxiety disorder accompanied by social phobia and mutism.  For some reason I have a hard time using the word "disease" or even "special needs" mostly because some days everything seems "normal".  As a family we play board games, go camping, have dinnertime conversations.  Inside the comfortable bubble of our home we are a big happy family.  The problem is letting this big world coincide with ours.  At the time we try and mix the two worlds it becomes hard, depressed, quiet, and overwhelming!

My daughter just started high school this year.  High school should be fun!  You know the stuff!  Sports, and homecoming, dances, and first kisses.  High school has clubs, and peers, and a new drivers licences.  For a child with Selective Mutism none of this is on their mind!  a child with selective mutism is roaming the high school hallways shoulders curled in, not making eye contact, and dreading the moment someone tries to get them to speak.  A simple, "hello, how are you?" is dreaded and brings on an overwhelming fear of actually having to TALK.  Oral reports are an automatic F grade, and walking across a crowded classroom to turn in homework is a no go!  My daughter will sit in her room working on her homework every night only to have Selective Mutism make it impossible for her to turn it in.  We have went to conferences hearing she hasn't done her homework only to find it all tucked away in her desk.

As a mom of a teenager with Selective Mutism I am tired!  I am tired of the constant need for parent teacher conferences.  I am tired of the constant emails telling me my daughter is failing, when just stepping foot outside our front door is an accomplishment!  I am tired of trying to pick her brain as to what may be causing her anxiety at any given moment.  I am tired of the looks I get from people who don't understand and think she is just acting out.  I am tired of people coming to me for answers when I don't have them myself.  I am tired of the blank expressions and when she closes up on me.  I am tired of all of our family pictures looking so sad, when I know it was only in that moment when she had to make eye contact with the camera.

I love my daughter with all of my heart.  It hurts me to see her struggle day to day.  It makes me MAD that God thought I was strong enough to handle this.   Some days I just want to hide in the shower and cry.  I am tired of having to be strong. Selective Mutism is Real!  The struggle is real!  As a mom of a child with selective Mutism it is exhausting!  It is exhausting because there is not enough awareness.  Our school systems and teachers need to know more about this debilitating disease and work on  a way to help these children.  So I beg of you please.  Pass this on to your teachers, principals, recreation departments, churches.  Help me get the word out.  Help me educate people, so our children can get their voices back!  We are tired.

 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 in situations or settings where they are comfortable, secure, and relaxed, such as at home.  More than 90% of children with SM also have social phobia or social anxiety.  Selective Mutism is not brought on by a tragic event, the child is born with it.  Studies have shown selective mutism may be genetic and the child often has a family history of anxiety.  This disorder is quite debilitating and painful for the child.  Children and adolescents with SM have an actual FEAR of talking and of social interactions where there is an expectation to speak or communicate.  It is common for children with SM to have a blank facial expression and never seem to smile.  Many of these children have stiff and awkward body language when in a social setting and seem very uncomfortable and unhappy.  Some will turn their heads, avoid eye contact, curl in their shoulders or completely withdraw into a corner or away from the group seemingly more interested in playing alone.  Studies vary a little bit but it is said about 7 in 1000 children suffer from selective mutism in the U.S.  This is a very sad disease that needs some awareness!!  We need help to break the silence and give our children their voices back!  Thank you for reading and have a wonderful day :)


  1. I have a teen who was diagnosed with SM at 5. I stopped everything to do the conferences and promote awareness too. Still, her kindergarten teacher told her that if she didn't speak she wasn't going home on the bus, and she made her watch the bus drive away when of course, she couldn't. Another teacher tried hiding to catch her speaking. At 8 she shut her voice off in all settings. She is turning 17. For nearly 9 years she hasn't spoken a single word. She is failing too. I don't understand how they can expect her to learn when she's in a constant state of fight-or-flight because they can't be bothered with her IEP accomodations . I see, all the time, things saying what to tell a teacher if your child has SM. What I don't see is where to find help if the teacher doesn't comply. Did I mention that I am a Speech therapist? They still won't help. I have no advocacy info due to lack of awareness. I understand the frustration.

    1. Kari, it is so hard! My daughter is now being homeschooled.