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.

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.

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.

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?

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?

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.

Selective Mutism and the play date.

The house was a buzz with neighbor children, my son interacting, playing and speaking to them as normal as could be.  Which was always the case that he could speak to his brother and the neighborhood kids.

They were playing tag and staying out of the living room.  Why stay out of the living room? All my good china pieces were displayed in there on a coffee table and the boys knew not to go near Mommy’s good things.

The children played and the door bell rang.  Surprise, surprise, …wink wink, … look it’s your little friend from school has come to play!

The children all came to see who had arrived, my son too.  Was this the moment that would be the break through?  I held my breath.  Oh, it ‘s XXX, why don’t you take him in to meet your friends?

My sons face began to change right in front of us. When he looked at the boy I could see it was clear he was happy he was there, but there where other aspect now overtaking him.  He took his hand and walked him into the group and then proceeded to be really be… selectively mute.  He spoke to his friends, but not to his school friend.  It was as though he lived in two worlds and could keep them totally separated even if they were together.  The little friend from school was so happy to hear him speak and not happy that he was not speaking to him. 

So we now knew the association with school triggered the selective mutism.

I would take my son to the grocery store and the same thing happened. Speak to the neighbors we ran into and not to the school families.  I found it frustrated and strange of how he could keep it all straight and not mess up the two.  But to him it was not a mess up, it was how he thought and the brain and anxiety must be a key as the doctors told us all along.

It was at the end of the school year, he would be turning 5 in a few months and we knew we could not send him to kindergarden , it looked like he would have to do a red shirt year at pre school.

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.