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….
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.
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.
The cranial chiropractor visit was one we really debated about. Should we, should we not. My feelings were that we owe it to our son to go down as many paths and as many dead ends until we find a solution for this. So we agreed we woud go down this path next.
We already had tried looking at diet, watching what he ate, tried to get yeast out of his diet. This did nothing.
We did get the homeopath to say from his findings that he did not think it was from lead poisoning, or vaccine relatead from a vaccination, like is tied to autism.
Or was it somehow tied? We have tourette syndrome in our family, could it be tied to that? No one had the answers we were looking for. Each time we some it opened up more questions than solving anything.
Months have gone by and many thousands of dollars have been spent. He is not speaking at school and the teachers see no change. Just his love for play doe.. and a boy that will play next to him for hours and not mind one bit he does not speak with him. What a blessing that little boy was. A friend perhaps if we have him to the house they will speak.
I arranged a play date for next week and see the cranial chiropractor on my to do list for next week.
My voice is now partially back and perhaps that is the subject of today’s blog.
Since regular medicine was not working on my son with selective mutism, we started to look at Alternative Medicine Our journey out of regular medicine to hopefully find a path to his recovery. At least we hoped.
At first, it lead me to read a lot on the web site in what was known about the condition. We called and got an appointment with a homeopath who was very well referred. It again took 6 weeks to get an appointment. No insurance taken and cash paid We arrived not knowing what to expect. I was so hopeful, my husband was very hard headed and thought this path was going to be a bunch of crock. Perhaps we were both correct.
The waiting room was full and there was a room off to the side that seemed to be an area where the formulars for healing were being dispensed. Many would come to the window, they would mix up a special liquid, place it in a brown glass bottle and they would leave. Humm
We met Dr. B and he asked all the normal questions. After about 20 minutes, he said lead us to his work area and said, lets get started.
Get started, what did that mean? We went to a chair where he asked me to sit down and put clay beads around my neck. Placed a probe on my finger and asked me to hold my son. WHAT!!!
He explained that the beads would neutralize my energy and my sons energy would come through and he could register the voltage based on putting the probe in different bottles he had and come up with a diagnosis.
I was still hopeful, my husband had checked out mentally at this point. My husband looked at this a quackery, I looked at it as a chance we had to take. I was measured and tested and after 15 minutes asked us to join him in his office.
When we got in there, we asked him did he know of selective mutism. No… in my mind I said, a bad sign
He did accurately told us us our son had a respiratory issue and suggested for the selective mutism or unknown issues we were having with our son, the paths of regression hypnosis and cranial chiropractic. HUH.. What … regress my son back to a past life?… yes.. he said, or a head chiropractor. Yes correct.
What will that do? I think the plates covering his brain are pressing causing the issue. OK and who does this? A cranial chiropractor. I had never heard of such a thing.
He then gave us a whole bunch of info that was written on a paper bag and filled the bag with assorted herbs to try with this issue.
Since I did not want a child of 4 going to be regressed into a pass life of who knows what, we opted for the cranial chiropractor. It would be another 2 weeks until we could get in…
Months went by and no progress. I thought we could wait him out. In fact we could not. So we tried some experiments. If he would not talk to children in class and would talk to neighbor children, if we invite the child to our house, would he speak to them? No.
OK, then lets try it at their house. No.
OK, lets try the teacher coming to our house. No.
But there was a small win, we took the teacher into the other room to talk to her and he must of thought she left. What do we hear and what does she hear for the first time. His voice! She was shocked and said, you were not kidding he is articulate. He speaks in full sentences. Yes, we told you that was the case. She said, I know, but I just did not understand the level was as high functioning as a 1st or second grader. I have never heard him speak a word. I didn’t know.
This made this teacher, Miss R, even more determined to get him to speak in class. She felt he was missing out on so much and so did we.
When we arrived in school the next day, she had a butterfly key chain with all sorts of old funky keys. She gave it to our son as a gift and said these are your keys to speaking. I give them to you to unlock your talking. She told him it was to be used when he wanted to speak. Just open the door of his mind with the key. It was a wonderful gift, one my son has to this day. I had such hope it would be just the key needed to open up his world.
Unfortunately, it did not open the door to his speech, nothing changed. The school year was winding down and we knew we could not send him to kindergarten this way. There must be more options. We must be more open. What the keys turned out to be were more of a symbol for us, to open our minds to the keys that may solve the silence.
We stopped going to the Dr. for the play dates which is what it had become. He was still spelling S.O.R.R.Y , but he had return to his bad, instead of sleeping on the floor at our bed.
Medicines must not be our only option, but yet what.. what is the next step? How blind we felt, going on gut and faith that we would find an answer.