Top 10 selective mutism teacher advice.

I am always so 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 accept 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 have put him on an IEP/ 504.  To force the school to educate him as needed, not as they wanted.

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Turning another page and not looking back. Now a college graduate.

The past 4 years have flown by.  College, fraternities, friends for a lifetime.  Graduating Summa cum laude, phi beta kappa. Fast forward 4 years and he has graduated college and is planning on going to go to law school.  He is grown and matured and has come into his own. He wants to use his voice in law, better the world or start the next Facebook.

It is so exciting to see him try to figure it all out, to make his way in the world and know he will leave it better because he cares, listens and speaks his mind.

 

 

His professor today lectured on Selective Mutism.

Today, I got a text from my son from college.  Freshman year is everything he hoped for and more.  He has pledged a Fraternity, taking honors classes and getting use to the riggers of college.

His text to us today caught my eye and would be relevent to this blog.

“My professor today in my colloquium had a lecture about selective mutism… apparently I’m like the only case to ever break out of it so young.”

Cannot wait to talk to him to hear about this one….

From Selective Mutism to Speaker at his Graduation

 

 

This high School graduation day shares our joy and his journey from selective mutism to graduating high school and speaking at his high school graduation as Student Body President.  A journey that at a blink of our eyes years ago would have seemed to far off and not attainable.

He sounded like a pro, no hesitation or fear.  Clear, concise and confident.  The teachers, councilors and family and friends all marveled, knowing where he started.

He has decided to study neuroscience and cognitive studies and perhaps his journey with selective mutism in some way helped shape that decision.  Perhaps someday, when he becomes a doctor, he will figure this all out for us.  Wouldn’t that be grand, one who had selective mutism, goes on to figure out how to fix it.

He was accepted to top colleges and will be attending an honors college in the fall.  All full steam ahead, not looking back.

For those of you just starting this journey with a child with selective mutism, we understand, we know the journey ahead and hold this day as a vision point, that your child too someday can stand in front of graduation and give a speech to his or her class.

 

For those reading this blog for the first time.  The stories in the blog works backwards, so start with the first posting and you can read forward today of you want to read the whole story.  This is our families journey story and we hope it helps others.

Meet the new student body president

The wonders of the junior year ending have now turned to thoughts of college and his first summer job. He came and told us  a few months back that he was going to run for historian. When we asked why, he said that there was a girl who thinks she should be student body president and he did not want to lose and be off student government next year.

My reaction was to say, he should go for it.  He won last year as Jr class president, why not try.  It was better for him to lose and know he lost, than to just win to be safe.  We had come so far, yet I still hold my breath, almost sometimes breathless, at what he attempts and does.

He was not going for it and I was worried.  The time for the election drew near, papers needed to be signed, signatures gathered. I kept my positive tone by saying you can do it and it is more that he tries then not try at all.

He decided to go for it… The election was held and he won student body president, and on the path to the vote, he had to speak to the entire school, speak to teachers, speak to the administration, basically state his vision for the school, knowing that he was to represent the school at district meetings, welcome the freshman, lead the student council.  However, I also learned that this position comes with the biggest speech of his life….which is at graduation, when he is one of three keynote speakers during graduation. Oh the places he is going, when there were days, years and times, I thought a single word was hope.

He is now going into Senior Year as Student Body President, my selectively mute as a young child turned student leader.  Still takes my breath away. Some of the students have been friends of his since the days he could not speak.  They sometimes remind him of  how far he has come. 

I have asked him to add to this blog, since he now knows it exists.  He says he has read it and wonders why I would do such a thing. I won’t repeat the word he call it, but at least it’s an expressive word….

 He says he will write for the blog and perhaps use what he writes for his college essay on overcoming adversity of having selective mutism as a way of defining himself and helping others.

Add Junior Class President to his resume, Selective Mutism did not define him.

Thinking back on the days he did not speak and could not speak at school, I am over joyed to update you on the progress and his accomplishments.  The child who could not talk when he was 3 to 5, now elected  junior class president.

For those who know him today as this very confident person, would not suspect that he could not speak 12 years ago.  Selective Mutism changed him, molded him, but did not define him.

He came to us a few weeks back after visiting Standford for a college tour and said he wanted to run for class president.  They were stressing that it was not enough to have top grades, sports, you needed leadership and give back to the community. I thought it would go in one ear and out the other.  The trip was worth it just for that.  He was willing to risk and go for it.

 He  plays sports, but never had taken a leadership role and one so visible.  He also told us he would be running against the homecoming queen.  As we have always done we supported his decision and held our breath.  This was a big step, public speaking, leadership, expression of ideas. 

Posters- check, T shirt vote for….,- check-  Speech- check.  Smile and hand shake and off he went to win an election.

The news that he had won was a victory in many ways far beyond the typical high school hype.  To us it was his passage not just to speak, but to anything he want to do.   I hope it inspires your child who may still not have made the journey that he has and have set a path to make it a reality for more.

Now he tells me he has to plan Prom and Homecoming…… for us this is a homecoming from Selective Mutism.  Now he has left me speechless.

Today a football player, 4.0 sophmore. No signs of selective mutism.

It has been a few years since an update.  Quite frankly there has been no signs of selective mutism.  He is a very social and talkative 16 year old. Not much verbal filtering, so that may have been lost during the time that other children learn to filter their words for the right occasion.  He is direct, almost too direct. Driving, talking on his cell phone, speaking and taking theatre. He even plays highschool football. Thing that when he was smaller would have not been considered or even thought possible .

I no longer worry if it will come back, or feel I need to tell the teachers to be on the lookout for signs that it is returning.

 Recently,  he is more interested in talking about “those days” and what he remembers. When he is ready, I will add those to this blog.

Selective mutism disorder blog is searched often, is it a disorder?

I have seen recently searches to get to my blog, the search string is ” selective mutism disorder blog”.  My concern is the word disorder, puts such a negative outcome adn on the present condition and what that means to others.  Selective mutism may be a condition, but  not a disorder to me, this tags it as something bad and wrong. It is not and it just is happening to many children, including my son who overcame the condition.  I am not sure  this is the best way to phrase it.

Perhaps unenlightened doctors or teachers think of it that way and it may be the correct medical term, but I don’t like the labeling.   I am sure a parent would not.  It is happening to their child and they desperately want to find a way to have it get resolved, to getcured or what ever it takes to make this condition go away.

Disorder places these children with lower learning students and this is not the case, they are most likely highly gifted.  If kept, placed or trapped in the system, they will loose their edge.  Yes it is harder to teach and interact, but never give up, do not allow them to be placed in lower learning and behavioural classroom and do not allow this labeling of 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.

Do you recommend group sports for children with Selective Mutism?

I got a question from a reader that asked: If I recommended group sports for my child who had selective mutism.  The answer for my child was Yes.  I did enroll him in group sports. Some group sports where better to try than others, for a child with selective mutism.  He did not speak at school, so as long as the children that he associated with at school did not participate, he spoke, if they were they were on this team he did not speak.  Selective mustim has a strange line of speaking and non speaking.  The coach was also part of the equation, a loud coach, he would not talk, a soft spoken coach, he would.

We tried all sorts of sports group and not group, in hopes it it would cause a break through with this speech.  It did not, but he liked doing the activity.

Group sports where he was on a team and running in a group worked well.  Soccer was our first try.  He got lost in the group. Tag football, he loved it.  Baseball, not so much.  He could not handle the spotlight of him stepping up to the plate and swinging.  Basketball was a good choice.  He never yelled to get the ball.  Lots of arm waving. Swimming not so much, same issue of the starting line focus was too much for him.  Running, did not like it, he was fast but could not handle when he lost. 

So all in all.  See what your child is comfortable with.  We started many seasons and did not finish. Others were great and he stayed all season and he grew a lot for having the experience.

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

• May 2008 (4)
• April 2008 (5)
• March 2008 (17)
• February 2008 (8)

The second grade is a good time to test for gifted.

A reader of my blog asked the following questions, that several of you asked about.

 Her comment was: How old was your son at the time of this testing?  I  believe with all my heart that my daughter is gifted as well as having the selective mutism (along with some SPD issues). She’s only 4.5 and has started reading without real prompting.  She’d hit the ceiling the non-verbal portions on a kindergarten readiness test (The McCarthy Scales of Children’s abilities), which is considered a bridge between developmental and IQ tests.  She has a language comprehension of a 7-year-old.  I don’t know how well she did on the visual-spatial parts, but I think she did quite well.  I’ll know for sure next week.

I feel that a gifted with an IEP designation will be the way to go, and seeing how it worked out for you confirms the idea that I need to push for it.

But one question remains – how did your son test so well on the private test, but not well on the school’s test?  What did the private tester do differently?

My reply: My son was 7 when after three years of trying to figuring it out and being tuned down and not passing 3 years of the school version of gifted testing, did we have him tested outside.  I think the second grade is a good time, since at that point he gap between this advancement and the teaching level, left us no choice.  His second grade teacher  called saying after 6 weeks from the start of school to tell us that he was done with second grade and what did we want to do with him?  Now we had that happen also in first grade, but at least it was after the xmas break.   My answer was teach him at his level.  That was not met with agreement.  Thus the outside testing was our only option left, besides leaving the school and that crossed my mind many times.

 

The private testing is done one to one, not in a group setting.  It is not in a school setting, this is very good for children with selective mustim  like mine who may not be able to speak at school or have anxiety issues around school setting or children from the school.

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.

Lack of eye contact, delayed speech, inflexibility with transitions.

I did look today at the Generation Rescue web site to see what other info could be learned.  I was stunned to see the passage below that was on their web site for Generationrescue.org.  As I read, I could check all of the things listed, and that I had chronicled in my blog that I saw and experienced  with my son with selective mutism. I have underlined them below.  This info below was written for autism, but all of them applied to my son with selective mustism.  I really do not know why this would be the case, but it is.  I will keep searching for answers.

Was there a detoxofication of my child that I was doing and not aware that it was of benefit.  I was very focused on this diet at that time, since I felt there may be a connection. I had at the time had the homeopath rule out mercury or metals. He did have him add flax oils to his diet.  Perhaps the pieces came together by accident?

This is a quote from Generationrescue.org:

Treatment: What’s Biomedical Treatment?

Childhood Neurological Disorders (NDs) are typically diagnosed by professionals with psychology and psychiatry backgrounds. Parents are often told that their children’s diagnosis is the result of genes and is psychological in nature. Typical “psychological” manifestations of these NDs in children may include delayed speech, lack of eye contact, impaired or non-present social skills, shyness, perseverative behavior (doing the same thing repeatedly), delayed gross or fine motor skills, sensory integration issues (sound and touch sensitivity, etc.), not responding to one’s name, inflexibility with transitions, and major, often unexplained, changes in mood.

Yet, the physical or medical issues that our children often share are rarely noted or discussed. Typical physical manifestations of children with NDs may include food allergies and eczema, general gastrointestinal distress, constipation and diarrhea, yeast overgrowth, immune system disregulation, and sleep disturbances. Typically, proper testing would also reveal high levels of environmental toxins relative to neurotypical children.

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.

 

The links between vacines, selective mustim and tourette syndrome.

There are so many unanswered questions in my mind, Was there a link or a tie between him later developing mild tourette syndrome and his earlier experience with selective mustim? I still think that ground zero for us was the immunizations and vaccines with mercury he was given at a year old and his change in behavior once having the shot and the then lack of eye contact. 

Even though the doctors said there was no tie at that time, I still think there was and that time will tell.  That from that time on some sort of receptors did not develop in his brain that should of due to the shots.

The idea that the three are threaded together or some how tied as apposed to three separate issues.  No one seems to have an answer or they are too afraid to look fearing law suits.

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.

If you suspect selective mutism, tell the mother or the father what you think it is.

It was several years later at a company picnic when a little girl came up to me and I spoke to her,but she did not speak to me.  I knew her mother from another department and with the interaction I had just had with the child and what the mother said I spotted it right away as selective mutism.

The mother told me not to bother that he daughter was shy and does not speak around strangers.  When I asked if this was the case a school, she said yes.  I then asked what the doctor said. She said she never mentioned it to him. I asked if she knew what is was and she said know what what is?

She had no idea that her child had selective mutism,  I told her what I thought it was and asked her to go on the Internet and do research and bring it with her the next time she went to the doctors and to the teachers.

It was about a month later that she came by my office and told me she could not thank me enough.  That indeed that is what it was for her daughter and that now that they all knew they were all working together on her selective mutism.

Sometimes, if you suspect it, tell the mother or the father.  She went on to say they suspected something, but they were too afraid to address it.  They just hoped it would go away or she would out grew it.

He made the leap and came out of his shell.

The potential we had hoped for to set the bar high, to have him make a leap into a first grade program with high academic and social standards was easy for him, harder for us.  He excelled at the program and within that year came out of his shell as the teachers described it. 

Pre school would of been a time for him to practice his verbal skills and without that time he did have some ground to make up.  What we where able to find out is my son actually thought the words just did not say them.  Thus it was just the act of speaking or speaking up that was needing practice.

 The interaction for us as parents was harder, since we were not practiced in the ways of the competitive elementary school parent society.  Actually it was a shock, since he did not make the school connections in the past. It was our first year of the social side of school that we had missed due to no one invited him or us in the past, since he did not speak due to selective mutism. 

In the back of our minds over the next few years, we worried that something would trigger it and the selective mutism would come back, it did not.  Were we just lucky? Was there divine intervention? Would it of happened naturally?

I now knew how to spot it early and helped another family who had no idea what was going on with their child.

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?