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.
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.|
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.
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.
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?
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.
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.