Blog on Selective Mutism


He graduated Jr. High with a 4.0 today.

I think a milestone should be added today to this blog.   My son graduated Jr. High, will be a freshman next year and had a 4.0.  For a kid who could not put two words together during pre school, this is a milestone. 

He talks, he talks too much, he is popular, words that if you had asked me 10 years ago, I would of said how, he never speaks a word to any of his class mates. He has tons of friends today.  The selective mutism never came back, but there are still hangovers to those days.  He is a perfectionist and it is his way or the highway. 

He will be a teacher, lawyer or preacher when he grows up, his word are so spot on.  The kids at school call him  Dr. >>>>, like Dr. Phil since he can tell them what in their life is not working and get them on the right track.   Parents call him the voice of reason.  They always know they can go to him to find out what really went on.  Words are a big part of his life.  He is a very good writer. It comes easily to him. Sometimes I think for all the early struggles, it should be easy.  Time will tell.

I  still sit in amazement at how far we have come and how many paths we went down.  Always fearing every grade that it would re-appear, luckily it did not.  How many teacher I had to train on what it was. How many feared it and tried to put him in a ” special class”.  How many were annoyed that they would have to have a child with Selective Mutism who turned out to be gifted.

So instead of going down the path they wanted him to go, I had to bully my way up.  I mean fight hard for him, fighting with the school administration, talking with state administrators who did not want to fund his alt test. Funding it ourselves and finding out we were right all along. 

The point was he was not mute and dumb, he was selectively mute and brilliant.  People have to learn the difference.  Einstein did not speak until he was 5.  That piece of info carried me through many a dark day. Helen Keller was blind deaf and mute, but not stupid.  My son did not speak at school, but did at home, so I saw different child then they say everyday.

So my advice and why I wrote this blog was to help others, since I had no road map.  Do not give up on your child, Dont’ ever give up, follow your gut, and do what you can do to make it right.



Top 10 selective mutism teacher advice.

I am always to grateful to see how our families story with selective mutism is helping other families.  I noticed that I have a lot more teachers coming to the site looking for advice for teaching a student with selective mutism.  It seem more and more common these days.  Here is what I wished I had known and been able to tell teachers of how to interact with a selective mute child.

So here is my top 10 for teachers.

1: Believe the parents when they tell you the child has the condition.  It was so important to have people who were helping, than those who were convinced it was something else.

2: Try many options. Try parallel play.  Take a speaking child who does not care if the child does not speak and let them play side by side.  Do not try to have them interact, that is too stressful for the selectively mute child. Patterning play side by side seemed to work well for my son.

3: Have lots of play dough or things for the child who is mute to interact with.  My son played with play dough every day for hours.  It made him happy.  He was listening to everything going on around him, including teacher class lesson, but was not able to sit and do regular sit and be taught process.  He would tell me what the teacher said that day when he came home.  The teacher was always surprised to hear how much he had retained, since she thought he was just over in a corner playing with play dough and was not paying any attention to her.

4: Tell the child that you know they are answering you, just in their head.  My son actually told me he answered every question, just in his head. So do not assume they are incapable of answering you or they are not paying attention. 

5: Try having them write out or act or signal out what they want.  My son would do anything you asked him to except he was unable to speak in the school setting. So don’t give up assuming they can’t and won’t.  There were certain words even with me he could not say, so he would spell the word instead of saying the word or use another word. We learned what his signal was for “I am uncomfortable”, for him  it was that he would pull on his eye lid.  This gave us, teacher included, a heads up and was able to take steps to lessen the stress of the situation for him. Be sure to tell them in advance, if there is going to be a change of routine. Don’t spring things on these children, they do not adapt well. Such as a change of teacher, sub, going to another room for testing.  He would retreat even more, if changes were not told to him in advance.  I would have the teacher every morning, go through the day, verbally with him.  If the teacher was going to not be there, I would tell him in the car and outline the day. If he was told in advance he was fine, if not it was a terrible upsetting day for him.

6: Find out if and when the child will speak, my son could speak very well when in the house.  So I would take the work each day from the teacher and do it with him verbally, so it would be reinforced.

7; Don’t assume the child is developmentally delayed or autistic. Actually, most are very to highly gifted.  Remember Einstein did not speak until he was five.  That statement kept me going for many years when he had the condition.

8; The condition can and will go away in most cases or at least diminish.  Give it time, it is on their clock as to when this will change and not yours. It can take many years.  So don’t think you are going to “cure” them.

9: The selectively mute child hears everything you say, so careful what you say and to whom you say it to.  Do not talk in front of the child  as though they are not there, they are not deaf.

10: Recommend the child be placed on a 504 plan/ IEP and be tested for gifted and explain to the parents the advantages and disadvantages. These children need more exposure, not less. This was not done for my son and I wish it had.  We have one now for my older son with Tourette even in High school, he is an honor student, but still needs accommodation and services to support.

10/09 update:   I want to add a clarification to being put on an 504 / IEP.  This does not mean pull the selective mute child  from classroom and put in a class with lower learning identified.  This means making accommodations in a main stream classroom and higher.  These students need more and faster, not less and slower.  As soon as we got the gifted designation, we had him moved to classes for the gifted on subjects they offered it in and then he went back to a regular class for all other subjects.  This gifted class worked well since it was a smaller class number and he was being taught at an appropriate level. 

That was always a battle with the school, since they only taught one year above class level even in a gifted level.  They indicated that the class curriculum strings were wider for the gifted program and thus covered the extent they needed to under the law.  My point was teach to his level, not to the minimum you are required to do for gifted students. That is why I looking back I should of put him on an IEP/ 504.  To force the school to educate him as needed, not as they wanted.



Should we remind our son that he had selective mustim?

I have written this blog to chronicle for others the paths we took with our son who had Selective Mutism, it starts at the bottom of the posts and reads up.  I have recently asked my son of what he remembers about the condition and would he remember at all that he was selectively mute?

It turns out he does remember and he remembers it in pieces, but not all pieces.  He remembers not talking in school, but not that we took him to a psychologist. He remembers that we tried a lot of things, but is not sure what we did. He remembers teachers coming to visit at the house, but he did not remember that we had a family member who was a school teacher come to observe him in the classroom setting.  It is a real patch work of memories.

I also came across a picture of him with other students in his preschool the other day and the blank look on his face was clearly there, and he was participating by hitting a pinata. This was so typical of a selectively mute child to participate but in silence.  His face changed dramatically from happy engaged child driving to school to a blank expressionless zombie face every day he was in pre school.

He remembers it as the way he was, he remembers clearly when the mutism broke.  He remembers when the things broke on the table and from that time on he could speak.

I will ask him to chronicle it from his remembrance when he is older. Someday I will ask him to add to the blog. But at the moment he is not looking back and his future is very bright.  He already in jr. high knows he wants to go to college at Standford or Harvard and we know he has the will, the brains and the voice to get there.

When I started this blog I never imagined it would have as many who seek it out or that I would have so much to tell on the subject.

 

So yes we did remind our son that he had selective mutism and he was not bothered in the least.

 

Be sure to start at the beginning of the Archives in Feb and read forward by month to get the full picture of selective mutism, what happened and how it was overcome. 

  • Archives



  • The IEP that was written with a gifted designation made all the difference.

    The next day with gifted letter in hand, I cautiously went to drop it off at the principals office.  Since I had already had many meetings that were fruitless with her,  I was sceptical, but hopeful.  I handled the letter stating he was designated gifted and she looked at it and said, OK we will have him moved into the gifted class tomorrow and your will have a IEP written and to you within the week.

     

    It was so sweet music to my ears, after all the years of no’s, all the …we will not move him, we cannot move him, we will do nothing more.  To hear yes…. and with action steps. The hours and hours, the meetings and the delays were finally worth it.

     

    The parents who told me to think of the gifted and IEP designation as Ruby Red slippers was correct.  It was exactly what he needed.  He moved classes and he did great. He did more than great, he thrived instead of dying under a system of bureaucracy. A system that is focused on no child left behind, was failing since they were leaving my child behind and it did not seem to phase them, since he was above grade level they felt it was not needed.  He was smart, he just had anxiety and had selective mutism in his younger years.

    The question was, once he spoke at school, if we should push him up to higher class in the same grade level and would he revert? It was what we thought he needed, not what the school policy was. We were right, our gut was right.  We did act and give him the chance to succeed and we did push and it was worth it for him.  Trust your gut when it comes to your child.

    The push was the right move. The expense was worth it.  He was pulled out for reading and math and non verbal and continued in his regular class room.  He was still way above grade level.  There was a gifted only school in the district, that they suggested we look at sending him to.  We felt it was better to have him be socially comfortable.  This also proved for him to be the best combination. Once you have the designation, you stay the program, unless the grades or behavior deems that they will not place them the next year.  He was placed in the gifted program every year.  The Gifted IEP that was written with accommodations made all the difference.

     It was suggested that he skip a grade and be moved up a grade to be taught at that grade level.  We rejected that as an option, since he needed to be with his own age group for social aspects.



    Outside testing for gifted designation

    We finally decided the only thing left to do and not loose another year was to have him tested privately for gifted designation.  It was very expensive, over $1200.  We reluctantly asked my parents for the funds to have him tested, since this could of turned out to be spending good money and a lot of it and not have him qualify for gifted. After all that we had been through and all the dollars we had already spent on the paths with selective mutism, it was a risk we needed to take.

    I learned there are three areas that a child can be tested designated gifted and each one qualifies for different services.  The first is verbal.  ( Reading ) Second is quantitative, (math), the third is non verbal, (spacial). The leap for our state was an 97% or higher to qualify in on any of three areas.  Under 97% you do not qualify. This means that he needed to pass the test in the top 3 percent, he could be designated in all three, only two or just one.

    We asked around and found several councilors that would give the tests, some at the university and some centers that treated conditions such as ADD and also tested for gifted.  I also had to figure out how many of the test they were qualified to give, if the state would recognized their administering of the test and it turned out to be that only one that fit all my criteria and could take us within a short time frame. Many of these centers where booked up for  6 months or longer.

     

    The councilor was a Phd and wisely insisted on a couple of session with my son and one with my husband and myself before administering the test. She openly told us, that since he did not pass the schools gifted test that she say many that had to do what we did and have him tested privately. There was no guarantee he would pass or qualify. 

    He went into the room to take the tests, it was 2 hours before he returned.  We where told he has passed in both verbal and quantitative.  There was a great deal of satisfaction to know we where correct all a long. To have it validated was so gratifying.  It made all the barriers, and all the brush offs fade away.  We knew he was gifted, we just could not get the school to agree and make the correct decisions, they were so clouded due to his past selective mutism issues and would not do anything without that piece of paper and passing a test. We were given a letter and told to give it to the school, that they would immediately need to accommodate.  Was it really the  “Ruby slippers” to his educational needs? The next morning I would find out, here I come with the letter in hand.



    Teachers were not recommending a 504 or IEP for selective mustim.

    I think one of the areas that we relied  a lot on teachers advice for was on the question of should he have the work up and qualify for an IEP or 504 plan.  I heard from parents that have children with disabilities or other conditions that they were put on a 504 or IEP depending on the condition.  The parents called it the “ruby slippers” to getting the educational needs met of their children. Basically it gave them the legal standing to make  or in some cases force accommodation and educational tailoring with in their school for their child.

    What the teachers failied to tell me when I asked about 504 or IEP,  was that I was asking for the wrong accommodations.  My son was very bright, he was a good student in their mind, so thier advice to me was why label him, and therefore they recommended nothing should be done. They would make thier own accompations in the class room. That is what I heard year after year, teacher after teacher.  Oh no … you really don’t want to do that, don’t label him, he is too bright.

    In the spectrum, I learned in most cases the IEP and 504 are for lower performing or those needing accommodation.  What I  finally learned is that I should of been asking for was a gifted evaluation. Why the teachers did not say anything is interesting. I learned later they don’t like to loose their brightest students out of their classroom and wanted the opportunity to teach him.  But it just was not working and he was not getting the education at the right level.  Now he was so bored and we where loosing his attention.

    I talked with other parents to figure it out.   I later learned you can be designated gifted and also have an IEP and or a 504. The issue was education path.  If he was first designated gifted, they would provide the right level of education, then apply the IEP to allow accommodations.  If not the accommodation would be in a lower learning room or in the class room.  Those programs are to slow the process down for learning not accommodate a high learner with additional needs.

    Once I asked the right questions, the test was given and with his anxiety he did terribly on the test, as I expected.  Put him in a new room with a strange teacher and he  would not pass any test, let alone a gifted test.  So they said he does not qualify, we could reapply in a year. Dead end.

     The teachers later explained that the testing for gifted given at the school was only one test format and the goals was to keep the number of children who qualify down, since they do not get the funding to the levels needed for these program. The other area is they are not equipped, nor do they want to have a mixture of a high class level of students and a child with accommodations.  I think it was a fact that they would need to change the way they teach and did not desire to do that.

    They did give me a clue, that there were 10 total tests that the state would recognize, the school just would not give them, they chose the hardest one to pass to keep the numbers down.  Nor would they pay the $1200 to test him privately.  They basically said again, if we could afford it we should try that route.  If not, he would not be accommodated.

     So this put us in a world of he is so advanced, but the tests that the school needs a grade on says he did not qualify …so your basically stuck.

     Should we invest in the tests outside? Why would the school not offer the other tests?  It lead me on another road in this long journey to figure out how to get the right education to my child that fits for him, not the school district process.  I had ideas, armed with options and wanted to not let this go. I call the state education board and learned some interesting facts…..

     I would ask each year the teacher if this was something that should be done for my son.  Their answer was, oh you don’t want to do that.  He is far too smart and you really do not want  him labeled. 

    Now this was confusing to me.  In the end we did have him tested outside at great cost and he was tested as and designated as gifted, it was needed for him to be in the right setting for a selectively mute child to excel, not what the school district dictates for main stream students. This designation put him on the correct path and he excelled.  It took a lot of our effort and our money, but it was so worth it.



    A flyer from Generation Rescue caught my eye at my doctor office.

    I had just finished my last blog on selective mutism and my gut feel that vaccines may be ground zero, when I was checking out from my chiropractor’s appointment. As I was at the check out there was a flyer taped up on the wall that read, “Are we poisoning our kids in the name of protecting their health? ”  Now this caught my attention and I asked if she would make me a copy.  It was from Generation Rescue, which I know nothing about and have never heard of before.  www.generationrescue.org. But it laid out the case for autism rate in 1983 of 1 in 10,000 with 10 shots required. And in 2008, 1 to 150 with 36 shots required. In small print at the bottom was a thank you to Jim Carrey and  Jenny McCarthy for their support of this organization. I had just seen her book on Autism at the Barnes and Noble when I was trying to find a book on selective mutism.  Could we both be on the same path for different conditions?  This info caught my attention.

     

    I wonder has anyone looked at rates of selective mutism pre or post the vaccine increase?  Is there a celebrity who had or child has selective mutism who can lend a face to this condition? The flyer talked about neurodevelomental disorders.  Could selective mustim be part effected by vaccines? 

    Perhaps the autism focus and research will lead to answers that will gain traction with selective mutism? I know that my sons tourette sydrome acts up after vaccines are given, so why would it not create the issues with selective mutism that would prevent speech?

     

    I also spoke to a gentleman at the airport who enlightened me that the sense of smell goes directly to the back of the brain is not influenced by areas in the front part of the brain.  Thus my sons heightened sense of smell would not be influenced with his language part of the brain, that was effected be the select mutism.  It is all small pieces of the puzzle I am still trying to put together.

     



    Books on selective mutism are hard to find.

    In adding value to this blog I decided to visit my local Barnes and Nobels to see what books to add and recommend on selective mutism.  There was a big table with Autism books and Autism awareness month.  I thought great, they will have books to look at on this topic.  When I could not find any, I asked and was told they had one. When he brought it to me, I realized that it was a fictional story that one of the characters had the disorder.  No help.

    I then went to look at the autism section and looked at different books.  There were books on what it is, books for children, books on group activities. It was mass merchandising of autism on a large scale.  I hope it gets the word out and their message spreads.

     

    So I do not have any recommended books, first person or clinical at this point to add as resources to this blog. I will have to add them as I find them at a later date.

     

    But it did show me that disorders are now big business. Book deals are make on them, people must be buying them, other wise they would not be available. So in the mean time, my blog is chronological. Start at the first entry and read up and you will get the full story and all the paths we took and the successful outcome we had with our son who had selective mutism.



    Talking with teachers about Selectve Mutism.

    If there was an area that we should of done better, it would be with his teachers.  They experienced first hand the condition of selective mutism and even after it has been diagnosed, they did not know what to do for it.  They wanted to help and were not trained how.  How to help? None of us knew. 

    They did try, but all were within the speaking world teaching methods, which I feel are not effective. They tried various methods like flash cards, did not work for my son. They tried incentives of candy and treats, no go. We sent others into the class room to observe.  No help. Came for home visits, he did not speak to her at home. We video taped it in hopes that if he saw himself it might do something. Ditto, no change.

    The question is DO SOMETHING, or is it better than ignore it?  For months we ignored it at the school level, working on an outside solutions.  We were ill equipped to work with his teachers. I learned over many years to be well prepared.  Articles in a notebook to show the teachers it was an actual condition. I always did a meeting during the morning of the first day of school. I would show up one hour early to introduce him and to talk about selective mutism and what to expect.  Some of his teachers where very open and glad I had come by, others looked at it as a bother and something else they were going to have to deal within their classroom. 

    I could always spot those teachers since they asked about an aide.  An aide??? He does not speak, he will do everything you ask except answer you or speak to you or the other students.  He would not answer the aide, so what good would that do. Will you be in the class room, they would ask.  I can be there as much as you like, but it will not make a difference. How can we mark his progress if he does not speak? You will have to find creative ways to interact with him.

    I just did not have the words myself to describe selective mutism to them in all its aspects. Does he have behavioral issues?  No. Can I or other children catch it? No. What caused it?  Something in has brain is shut down in the school setting.

    The questions were endless. I had very few answers that were in detail.  Once the selective mutism had been resolved the conversation with the teachers were almost disbelieving that he had selective mutism.  We wanted to make them the early warning system to pick up on any behavior that would indicate it was coming back. They would always report at the parent teacher meeting how well spoken he was and how smart he was. They said they would like him to participate more.  More …. to us it was great that we were even having this discussion about more participation. 

    They were more concerned that he was finishing the school year ahead of the other children and wanted to move him ahead a grade or move him to another school for the top gifted children,  They got a big resounding NO from us on both accounts.  But that was the issue that would be the crux of the issues for grade 1-6. Once he has his voice back, how much change do we want him to have?

    I learned a lot and if a child is one grade above the school level the school in not obligated to teach the child at their level.  That is a sad fact in our school systems today.  They just expand the strands of learning. Thus we had to choose in our minds between keeping in place and speaking and getting them to teach him at this level. I never thought we would have to make that choice.

    What was the school was willing to do? To them he seemed fine and advanced, so they just want me to go away.  We had come so far and I would not give up. So what was next?



    The early signs of Selective Mutism we missed.

    Just as the woman who I worked with missed the signs with her daughter, so did we.  Even as an infant, my son would not make the same kind of eye contact that his older brother was doing at the same age.  We talked about it and decided he just did not like to look or focus on our face, like his older brother did.  He would look focus at us and then divert his eyes or turn away. When he a little older, he had a thrusting motion with his tongue, that became a clue to us when he was in preschool that he was anxious.

    Thinking back, I should not have written off that simple turn of the head.  It made us think he was shy. So for the first two years, we had already made assumptions about him, we should not of.  We thought about perhaps he had sight or hearing issues and had those checked out. 

    He had the loudest cry and piercing scream as a baby.  We use to say it made us sweat when he cried.  Again reassured that it was just a different child than our first and not out of the norm.

    I talked and compared with other mothers. It lead me down a path to accept as normal things that should of been the first signs of anxiety or selective mutism, when you look at them in total.

    When the preschool teacher came to ask  us how long he was developmentally delayed, it was a shock.  We were clueless, we had missed the cues we saw to give us a hint of the things to come that he did not speak in school came as a total surprise.  How did we miss it?  He was not delayed at all,  but when he was in school without speaking he was to them.

    I write this blog as a way of helping other families that may starting on the same roads that we traveled.  If it helps one other family, my time writing this will have been worth it.



    A current note: my son who over came selective mutism is now 13

    I got a response to those reading the blog to remind those as I said in the beginning, that this blog is a chronicle of our families journey with my son who had selective mutism.  It traces all the paths we took and all the things we did and the roads we tried to help him overcome this condition.  Start at the beginning of the blog entries and read to current day to get the full picture.

    He had the condition of selective mutism from 2 to 5 years of age. He is now 13 and has had no sign of the condition since age 5.  Read the blog entry on the “If there was ever a time to say your sorry” and the one on “Glass breaking” to find out how we had a break through and he began to speak.

    Today, he is the typical mouthy a teenager as you can get.  And I love every word… to his friends, all the times he is on his cell phone talking, when he talks back to a teacher…. When he talks back to me.

    He loves to bargain and haggle with merchants, he loves to give presentations. He is an old soul with a wonderful way with words. His gift now is truly his words.  We say when he grows up,  he will be a preacher or a teacher or the best lawyer.

    On vacation he told us ‘This is too much paradise”… his friends call him “The voice of reason”.  His voice and his words are a wonderful thing.  You can read the blog in total from bottom to top at peermentor.wordpress.com  I hope this news of our success gives other families just starting this journey hope and advice that it can have a great outcome, as hard as it seem going through it.



    Would his selective mustim history stand in his way of his full potenial?

    Kindergarten first day was an anxious for us as it was for him.. Actually I think he did better. We spoke to the teacher on the first day, told her of the situation and asked that she tell him ahead of time what they would be doing, watch for any anxiousness on his part and crossed our fingers.  Was the selective mustim gone or would it reappear in this new school setting?

     

    The teacher said he was quiet, but did interact and did speak to her and to another child.  Good news…day one. The school year progressed and he did very well, still very cautious and somewhat shy but he was speaking and interacting.  The teacher was hoping for more interaction and participation, but with all that had gone on for the past 3 years we were thrilled.

     

    One day his teacher called in sick and he had a set back, and was very upset, but other than that, the I’m Sorry stayed verbal and so did his words.  When she returned so did the words.

     

    He completed kindergarten with flying colors.  My desire was to move him into an accelerated program for first grade that the school offered.  He had not been accepted on the first round. I am not sure why, but he was not, so I asked his kindergarten teacher to keep and eye out and if an opening happened, we would want to put him in this learning family class.  This would be a huge leap for him to come into his own.  These were the brightest children in the school and the most aggressive and highly participatory parents.  I hoped that this would be the next step in having him reach his full potential.

     

    We knew he was bright, we just did not know if the pressure of setting the bar higher would make him soar or retreat into his world of selective mutism.  As I have all along this journey, I wanted the best for him and for nothing to stand-in his way.  Could I expect the same from him as I could from a child with out this condition?



    He developed a heightened sense of smell. His early warning system to anxiety.

    Time did tell that his selective mutism did not return when he went back to preschool.  Some aspects of his control of life did change and became complex.  His need to plan the day and his sense of smell became heightened in certain situations.

     

    Planning the day became a big deal in the house. We needed to tell him each morning exactly what was to go on that day. This seemed to give him comfort and if the day turned out to be has we described, he was fine.  If the day turned out to be different and not as he would of expected, he would be very anxious and unhappy.

     

    We dropped him off as pre school one day and the teacher got sick and a sub came in.  He withdrew and cried. He came home very mad that we had not told him of the change. For years after I would tell his teachers to prepare him in advance for change, if they did not that it would cause him issues.

     

    Another day he was put into another classroom without preparation and that was very unnerving for him.  He seemed not to be able to function if the plan changed without some advance notice.

     

    We went on a play date to his friend’s house that had played with him all those years when he did not speak.  His friend was delighted he now could speak. We went to his house for the first time.  The plan was for me to stay for a while and then leave, to see how he would do.  I told my son the plan and he want not happy about me leaving.

     

    We get to the friends house and they greet us.  My son walks in and says, This house smells.  Mom, I can’t stay, the house smells.  I am embarrassed, and I tried to say, oh no there is not smells is this house.  At least I could not smell anything.  Our friends were horrified, as he continues to say, we have to go, this house smells.  After that time, if he was anxious he would tell me it would smell, as a way to tell me he was uncomfortable.

     

    He completed his red shirt preschool year with flying colors, speaking up and now fully participating.  The teachers were so pleased with this progress. Kindergarten was now weeks away and all that made him safe and secure to speak was about to change, new school, new friends, how would that effect the fragile hope that the speaking would continue. Was his selective mutism really gone or would it return?



    When the glass broke, it broke the selective mutism silence.

    The next morning was filled with anticipation,  would he say I’m sorry again or would it be a one day exception.  Would it effect positively effect his selective mutisms? We held our breath.

    He came bounding down the stairs, had breakfast,… and spilled his milk.  A typical morning with a 5 year old. Then the words, Mommy, I’m sorry, I’ll clean it up.  My husband and I stood there stunned. What, he said it in such as normal tone, like he had spoken that word all along.  From that day forward it was like a light switch had been turned on and that word Sorry was no longer an issue.  Nor did he after time remember that he could not say the word Sorry.  We once we realized he did not remember not speaking the word, we did not speak of it again, since we were afraid he might revert.

    Preschool started next week, and the teachers had already begun to set up their room.  We planned a visit to the school that week to see if it has any effect on his selective mutism.  He had not spoken a word at the school for over three years.

    We went into his last years teachers class room and she was so delighted to see him.. Oh,xxx how was your summer?  She immediately answered;  since she knew the drill.  Oh I bet it was great. 

    He then said, Hi Miss R, I had a great summer.  The teacher dropped to her knees, my husband and I cried. It was the words we had hoped for him to speak  He looked at me as said, mommy what are you crying?  We just could not believe our ears.  Something happened when the glass broke that broke the silence.

    I just sat their watching my son and his teacher on the floor, he was sitting on her lap and he was speaking full sentences to her.   She reminded him about the butterfly key chain and that if he spoke she would give him more keys.  She called it his key to speaking.  She went to the draw and pulled out some more old keys and told him they where his.  She later told us, she had practically given up and was going to give them away.  My son still has those keys.  It was a ground-breaking day.

    But how long would it last, would he speak to the children in a new class this year.  We waited for Monday for school to start overjoyed at the miraculous progress. Our selectively mute son had a break through of huge proportion.



    The gift of saying the words I’m Sorry, changed his life and his words for ever. The selective mutism was gone.

    My son looked shocked at what had happened.  I calmly took him into the living room and started showing him the shards of glass and pieces of bowls. I told him if there was ever a day to say you’re sorry- this would be it.  He started by spelling out S_O_R_R_Y, mommy, I know I should not have done that, mommy. His brother came in to find his clay art project that we so proudly displayed also in smashed pieces.  He was not happy and his brother knew it. S-o-r-r-y , s-o-r-r-y, he spelled over and over again.

     

    There was something in me that wanted to push the issue at this time.  Perhaps if he would not speak at school, perhaps we could gain closure on the I’m sorry speak at home issue. I started by talking to him and telling him how sad I was, picking up the shards of glass and letting them fall through my hands.  I kept calmly telling him that if there ever was a time to say you’re sorry this was it.  An hour went on, we cried, discussed the incident, and discussed why he could not say he was sorry. This looked at though it was going to be another dead-end.  My husband came in and said that I was pushing him too far and that I should stop and let it go.  I did not.

     

    Another hour went by and no progress, then just when I was about to give up… my son started to say something.   In a very low tone, not in his own voice, it came out, slowly,  I-I_mmmm, s-ooorrrreee in a very deep voice.  What what did you say?  I could hardly believe my ears; did I hear what I think I have just heard? M husband came into the room in time to hear him say again in this very deep voice and very slow as if it was difficult to get it out,  I—mmmm Soorr–eee.

     

    We were overjoyed. To hear I’m sorry, said in words, it what we had waited to hear for the past 3 and a half  of his 5 years.  There it was, he said it.  We praised him, and asked him if he could say the same thing to his brother.  His brother came in and this time he said, I’m Sorry, I broke your art project,…. it was clear and distinct now, in regular speech page and in his own voice and tone.  He brother was amazed; hey mom, he said it, finally a break through.

     

    If you ask me what I think happened, I think the trauma of breaking the crystal caused some connection in his brain to connect, that were disconnected.  It was like a switch was finally connected and information was now flowing normally.  But for how long, would this be a one-time event? Would it affect his selective mustim.  It was late and tomorrow would tell us more.

     Good night Mommy, I’m so sorry for breaking your things. It brought the biggest smile to my face in a long time. To me it was worth breaking everything we owned to have a day like that. The words I’m Sorry Mommy was a gift that was finally here.



    If there was a time to say your’re sorry, this is it!

    It was a weekend and the house was a buzz with activity, family has come to visit, cousins for the kids to play with. The drill was to remind everyone, to be careful in the living room, since all my good crystal and such was on the coffee table and that this a no touch, no play zone.

    It was something I had set up when the children were small to protect the nice pieces and still have them displayed and for the past 5 years it had worked well with my older son and my younger son just followed along and we never had an issue.  I also felt it was important not to hide good things and have them around as they grew up.

    There was a tiffany pitcher, decorative plate collected from a Japan trip, other gifts of crystal that was given to us at our wedding.  All in all pretty pieces that each meant a lot.  All family and friend knew that these were collected and prized. My sons knew to avoid and not play around these items.

    The adults were in the kitchen talking and the children playing and chasing when all of a sudden the loudest crash and glass sounds, children screamed and ran to get us. We went rushing in to see my son laying near a very heavy glass table that was now flipped over and crushed and smashed every piece of china on the coffee table.

    My first thoughts were of his safety, and he looked fine, but dazed. He had been chasing a cousin when he fell, hit the top of the glass coffee table, flipping it over and spilling all the pieces onto the floor, only then to be crushed by the glass coffee table now falling on it.  Luckily when he put his hand on the table as he fell, he fell one way and the tabletop went the other.

    Once all was found to be OK with my son and no one was hurt, the guests cleared out quickly. I think they knew it needed to be cleaned up and I did not want help.  I knew at that moment that today was the day if I could ever get him to say the word sorry from his lips… today would be the day.  This was something that he had never been able to do, even at home and was somehow tied to the selective mutism. What happened over the next two hours would change his and our lives forever.



    Our son lived in both worlds of speaking and selective mutism

    There comes a time when you just have to accept what was going on.  My son lived in two worlds, the world of the speaking, and the world of being selectively mute. He did not seemed as bothered as we were that he did not speak.  He seemed very happy. The summer was filled with his talking and growth. Neighbor children came to play, he went to play, so normal, so regular, so talkative. Go to a school friends house, no talking, parallel play, so different.

     

    He was about to turn 5, and we decided not to send him to kindergarten and to give him the gift of another year of preschool to see if this all worked out.  He still could not say his was sorry; without spelling it, he was talking to us about why he thought he was not speaking.  He just said, I can’t or the words just don’t come out.

     

    The use of medications to treat option was returning as the only next choice, with all the other paths we had followed not finding a solution. We were still resistant. No protocol for children of this age, side affects TBD.  It was just not the desired out come.  The more we reviewed this with the Dr. the more the message was clear.  Do you know what potential this child has and that you as his parents are preventing this from happening. 

     

    We felt awful.  We felt as though there was not one else in this world that was bucking the system and saying no.  We finally agreed, if nothing changes by the time he was to go back to preschool we would reluctantly consider medication options.  Hope for it to work itself out naturally was fading. Just like the long days of summer coming to an end, the school year loomed just two weeks away.



    Our next stop, the Cranial Chiropractor.

    The big day arrived to seek more alternative options for selective mutism and we went to see and visit the cranial chiropractor.  We arrived at the office and it looked more run down than I would expect and more like an accident treatment center.  This had been a big debate to take this next step.  What happened if the doctor cracked his head, like they crack your back and something happened?  All sorts of concerns buzzed in our heads.  How would they move his plates in his head and how did they get moved in the first place.  Or do heads even have plates at his age. It was all a blurr.

    We were all taken into a room, asked a series of questions, whoever we did not most the questioning as to how this works, had he done any other selective mutism cases…..well no….but it is a proven method for many symptoms like his.  We hesitantly agreed to proceed.

    Head x-ray, clear… we could stay in the examining room for the treatment.  Quite music was put on the lights dimmed slightly and the doctor begins to rub his head like a scalp massage.  A scalp massage is what we are paying all this money for……

    The one thing we did notice is my son really enjoyed the light touch message. Which help us allow this to continue. At the end the doctor said he had done some adjustments and we would need to come back for a series of sessions to see results.

    Results!!! Well maybe, lets see if we see an improvement and call you for another appointment.  It did nothing and we never returned to the cranial chiropractor.

    It was another dead end.  After telling our neighbor who was a school teacher about the days events and no talking progress, she told us that the school district is mandated to provide speech therapy and pre school for children like my son and I should look into it.



    Aunt B finds on the web an answer. It was Selective Mutism.

    Six months went by with no change at school, not a word.  It was just the strangest thing.  In the house playing with his brother or with friends, it was the son we knew. Chatty, happy and engaged.   A far cry from what we were told and what we were not observing.  A child in school so removed, so withdrawn, it would break my heart everyday.

    I had thoughts that he was just stubborn and that it would pass, but as the months went on. We slowly began to ask our family members if this was something that was in the family that we did not know.  Still having no idea that there was a name for this randomness.  It was faceless, perplexing and as new parents, not prepared for.

    It was an email from my Aunt B that gave us a direction and a course, or at least something to follow up on.  It was an article describing things very similar to what we where seeing and experiencing with our son.  They called it Selective Mutism or Elective Mutism. It described the silence or called it shy, it also said it was a form of anxiety and very rare.

    OK … what we were expericenting with our son….it had a name Selective Mustism. but does he have it?   How do we find someone to tell us if he has it?  What is is and why does he have it?

    The first place we turned was to his family doctor who gave us the name of a child phycologist and suggested we start there, since he had never heard of it.  Something our Doctor has never heard of??? Something we did not know if is was short term or long term or life long?

    We called the next day… an appt in 6 weeks. … 6 weeks..  I could not think to wait that long, but we did not know where else to turn.  Would the new Doctor believe us? Would he talk with the doctor? He liked to talked to his own doctor.  Which made it look like we were really over the top parents, since it was like your car with an engine ping, when you bring it in you cannot get it to do it in front of the technician.  Since the Doctor saw a perfectly normal child  who could speak, and I suspected he thought we as his parents where just too high strung.

    So thanks to Aunt B and her Internet search the puzzle pieces fit.  It felt good, if only for a moment.  He was finishing up the year at preschool and still not a word, still blank in the face while there.  How and if or should we send him next year to kindergarten?  Is it better to send him next year… mute, or wait and sit him out until he can speak someday?  Perhaps he would forget over the summer and just start talking? Perhaps he would never speak. I felt very alone.

    No one else I knew had a child that was doing this. Why would he be different?  Still not able to talk to the teacher or point to colors like all the other children. Not making friends except for one boy who did not care if he did not play with him or speak to him.  The other children knew he was different.  At a time when we did not want him to be different, he was.  We wanted him to be normal and speak.  He was not speaking in preschool and we would have to wait 6 long weeks to find out if this was what was happening.



    Selective Mutism our families story.

    After reading the People magazine on Selective Mutism and having a son who not only had the disorder but overcame it due to a particular event that I will tell you about that caused a break through. 

    He did not speak one word while at pre school. He is now 13, a champion speech contest winner, straight A honor student and very popular. 

    Thinking back, I only wish I had heard such news when we first found out that he did not speak at school when he was 3 to 5 and diagnosed with Selective Mutism which was also described as elective mutism. 

    I plan to cronical through this blog the many paths we took, the dead ends we were lead into and what ultimately happened to have the break through we hoped so badly for.