Blog on Selective Mutism


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.