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.
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.
A reader of my blog asked the following questions, that several of you asked about.
Her comment was: How old was your son at the time of this testing? I believe with all my heart that my daughter is gifted as well as having the selective mutism (along with some SPD issues). She’s only 4.5 and has started reading without real prompting. She’d hit the ceiling the non-verbal portions on a kindergarten readiness test (The McCarthy Scales of Children’s abilities), which is considered a bridge between developmental and IQ tests. She has a language comprehension of a 7-year-old. I don’t know how well she did on the visual-spatial parts, but I think she did quite well. I’ll know for sure next week.
I feel that a gifted with an IEP designation will be the way to go, and seeing how it worked out for you confirms the idea that I need to push for it.
But one question remains – how did your son test so well on the private test, but not well on the school’s test? What did the private tester do differently?
My reply: My son was 7 when after three years of trying to figuring it out and being tuned down and not passing 3 years of the school version of gifted testing, did we have him tested outside. I think the second grade is a good time, since at that point he gap between this advancement and the teaching level, left us no choice. His second grade teacher called saying after 6 weeks from the start of school to tell us that he was done with second grade and what did we want to do with him? Now we had that happen also in first grade, but at least it was after the xmas break. My answer was teach him at his level. That was not met with agreement. Thus the outside testing was our only option left, besides leaving the school and that crossed my mind many times.
The private testing is done one to one, not in a group setting. It is not in a school setting, this is very good for children with selective mustim like mine who may not be able to speak at school or have anxiety issues around school setting or children from the school.
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.
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.