Monday, September 14, 2015

The Face of Selective Mutism


When you look at this kind, smiling face you may not think you see anything but a normal kid in a school uniform with a bright smile.  Innocent and carefree.  He is a prisoner in his own world, that is what you cannot see.

You would not know that he suffers from a severe anxiety disorder debilitating him on a daily basis. Doing normal things like speaking to answer a question or giving an order of food at a restaurant is extremely difficult. He speaks in a quiet, monotone voice so low that even a mom cannot differentiate what he is trying to convey.  He gets so frustrated when you ask him to repeat what he has whispered to you that he completely shuts down and cannot answer you at all.

He does not understand jokes, he takes words very literally.  Things are very black and white.  He gets annoyed that you're laughing about something he does as he does not understand that you're not making fun of him but laughing about the situation. "He is just shy," is what most would believe.

He does not like to be touched, or hugged.  This behavior is not welcome.  He has problems transitioning to a new activity so we have to give him warnings before hand so that he knows it is coming.  He hates not knowing where we are going and he needs explanations for everything you do, everywhere you go and why you need to go there.  It's a safety mode for him.  He cannot have a phone conversation at all.  Which is scary as he is at the age where he might need to dial in an emergency yet he cannot speak.  I have done drills with him for calling and speaking to me is okay with him but no one else.

He lives in a world much the same as you and I but isolates himself playing video games for hours because in that world, he finds comfort and solace where there is no one questioning his voice or lack thereof.  He will not speak at all and is not being judged by anyone.

When he does speak, most days we have to ask numerous times for him to repeat or speak louder.  We find ourselves frustrated with each other and he often just shuts down and goes to his room or continues what he is doing and lets his questions go unanswered.

When he is able to speak and tell a story, he is quite meticulous and very mature.  He has a wonderful personality that shines through with a kind hearted nature of compassion with whatever subject he is passionate about.  I often wish he could share this with others.

We get excited with him just to hear the joy in his voice.  His laughter is infectious and he genuinely wants to be heard, but this disorder holds him back from doing what comes natural to most of us.

Early on in his life, his father and I had divorced after 16 years of marriage and four children, all his older siblings as he was six years behind them.  At first, we thought maybe it was the trauma of divorce.  When he was very young, he would just point to things and never say a word, we didn't think much of it as he was the baby of our family and everyone loved him so much that his wish was our pleasure without question.

We had spent years off and on in and out of several Doctors' offices by the age of six. Something as simple as asking for a cup of water was difficult. We knew something was not right, but we had no answers.  He was having difficulty expressing himself in school, and making friends and communicating with teachers was a daily struggle as well.

The elementary school staff had recommended a specific doctor to do some testing for Autism.  Aspergers was a disorder I was not familiar with but had to be ruled out as well.  His intelligence is above average and he has tested above every grade level for academics.  He is brilliant and does not have any learning deficit whatsoever.  He speaks fluently and has a wonderful vocabulary beyond his age level.  Now if only we could hear him.

The diagnoses at age seven was difficult to hear as he was put through test after test, from the doctor that the school had referred us to.  She is a specialist in this field and we were sure to get the answers we needed to help him live a normal life.  It was SEVERE ANXIETY.  That's it? So we thought we could work on it.  We spent time reading and working on workbooks for anxiety and giving him little tests in public, I tried everything I could.  Yet, it wasn't working.

By the time he hit fifth grade I knew that could not be all.  Still no progress, he was still doing things exactly the same way and we still struggled to communicate with him.  I decided to do some research of my own. Jr. High right around the corner and how the heck is he going to go about his day with several teachers and not be able to use a voice loud enough to understand his needs.

Researching and being pro-active about the issue of his anxiety was hour after hour on the computer and time sitting on the floor of the local bookstore looking for a link to the symptoms (for lack of a better term) matching the ones my son was dealing with and experiencing above and beyond yet within the parameters of anxiety and on the autism spectrum as well.

The first day of digging and I found a website on the back of a book with the information on selective mutism.  I quickly gained insight into this disorder and how little people were informed about it.  The more I read, the more excited I became.  I knew I had found the answers.  I soon went back to the original Doctor who had diagnosed with Anxiety and asked her if she could please test him.

The results were unanimous. We had answers. Now we could begin to fine the avenues to help him. Or so we thought.

Sadly, he was now past the age for the workshops they held at the local University.  He was one year older than the cutoff for these courses.  The only other groups and meetings I could find were in Chicago and places far away.  Jaydon has a fear of flying and a fear of everything pretty much so this only complicated matters.

Resources were limited.  I continue to read and follow up on everything new on this disorder.  He entered Jr. High this year and with a lot of love and understanding, we all do our best to help him feel as normal as possible.  We have created a 504 that suits his needs within the school district.  It helps the teachers to understand more about him and what makes him tick.  It helps him to feel at ease as he does not have to get up in front of the class to give a presentation.  He would freeze and you would see the tears roll down his cheeks.  He simply cannot get the words to come out.

The resources have since grown immensely and you can now find a plethora of information and support groups along with books and valuable insight online to help you reach an informed conclusion as to whether or not this might be something your loved one suffers from.

He continues to grow every day. I know in my heart he will be just fine.  Time and patience invested with him and he will succeed.  He will speak louder and more confident than ever.  I hope to bring more awareness to this issue and help others understand the "quiet" "shy" "anxious" child they may have.  Together with hope, we can shed light on this disorder, they call "Selective Mutism."

Resources: A great place to start. You will find books, camps, conferences, resources and so much more.



What is selective mutism?

Selective mutism (formerly known as elective mutism) usually happens during childhood. A child with selective mutism does not speak in certain situations, like at school, but speaks at other times, like at home or with friends. Selective mutism often starts before a child is 5 years old. It is usually first noticed when the child starts school.

What are some signs or symptoms of selective mutism?

Symptoms are as follows:
  • Consistent failure to speak in specific social situations (in which there is an expectation for speaking, such as at school) despite speaking in other situations.
  • Not speaking interferes with school or work, or with social communication.
  • Lasts at least 1 month (not limited to the first month of school).
  • failure to speak is not due to a lack of knowledge of, or comfort, with the spoken language required in the social situation
  • not due to a communication disorder (e.g., stuttering). It does not occur exclusively during the course of autism spectrum disorder, schizophrenia, or other psychotic disorder.
Selective mutism is described in the 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition (DSM-5: pp.195–197).
Children with selective mutism may also show:
  • anxiety disorder (e.g., social phobia)
  • excessive shyness
  • fear of social embarrassment
  • social isolation and withdrawal

How common is selective mutism?

According to the DSM-5, selective mutism is an apparently rare disorder that affects fewer than 1% of individuals seen in mental health settings.

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