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.
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….
This day and this photo, the only photo I have ever posted, shares our joy and his journey from selective mutism to graduating highschool 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.
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.
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.
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.
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 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.