Here’s a post about how we came to suspect my middle daughter had selective mutism when she was 4.5.
We took her to a pediatric neuropsychologist in April 2008, who was very good at what she did and very thorough. I have to add it’s not mandatory for an extensive neuropscyhological workup to get the diagnosis, but we chose that route because I knew they would provide a battery of tests to evaluate her strengths and weaknesses, even if it was rather expensive. In addition to selective mutism, I had also suspected a higher than average intellect and I wanted to be able to show the schools what I already felt was true for her.
This is what the testing looked like for her
She pointed me in the direction of what is going on behind the symptoms. Her theory (and after researching it a year and a half, I’m convinced of it too) is that there are primitive reflexes (predominantly the MORO reflex and the Fear Paralysis Reflex) that haven’t been integrated so that they fade into the background. They are in a state of “high alert” – you know, the flight/freeze/flight stress response. They are stuck in “freeze” mode. We have to help those reflexes integrate. This is easier when the child is young and the brain is more flexible.
One thing to keep in mind is that oftentimes anti-anxiety medications are prescribed for children with SM who have been struggling for years. The earlier the child receives help, the less ingrained the mutism will be and the less likely medications will be needed. After 8 years of age, it becomes more difficult to break the ingrained habits of SM.
It is often stated that it is necessary to keep children with SM in school in order for them to overcome it. Some parents are electing to homeschool their SM children. I can’t say for sure if that is right or wrong. I always kept that option (homeschooling) open myself.
Does a child *need* a brick and mortar school? Not necessarily, however, in the RIGHT circumstances, it could be beneficial. But it has to be the RIGHT circumstances. The wrong circumstances could be devastating to an SM child.
The wrong circumstances:
- The teachers trying to “force” child to talk.
- The teachers giving up on child if they don’t talk.
- Teachers trying to entice child to talk with rewards
- Teachers punishing child for not talking
- Teachers not keeping other kids from bothering child
- Teachers not using techniques to gradually help her make responses of *some* kind (sometimes SM kids will nod their heads for yes, or shake their heads for no, or can high five instead of say “thank you”).
The wrong circumstances will keep an SM child trapped or force her to retreat even deeper.
The right circumstances –
- Teacher has knowledge of what SM or is willing to learn.
- Teacher has the ability to make a comfortable environment within the classroom (good classroom management skills) so that child feels “safe” (being bothered by other kids is not a safe feeling).
- Teacher keeps pressure low but expectations high (meaning, the teacher understands how difficult this is, and will accept ANY kind of nonverbal response and eventually getting more responses out of the child – mouthing the words, whispering to the teacher).
The right circumstances will help prevent worsening of the condition. The most ideal conditions will help increase confidence and reduce anxiety.
I finally wrote a post on what my daughters preschool experiences were in the special needs and community preschool (how different they were in intent and result) and her IEP goals/accommodations in preschool and kindergarten.
This is a great handout you can give to teachers while you try to work on the SM.
(ah rats the above is a dead link, please leave me a message and I can email you the document if you are interested).
If the teacher is willing to learn about SM, you know you have a good teacher on your hands. If the teacher is not, then I wouldn’t send my child to that teacher.
For us…even though K’s community preschool teacher and the preschool director did not know a thing about SM, they were willing to learn and willing to help my daughter as much as they could even if it meant simply making her feel safe, accepted and loved (yes, there are some really loving teachers out there, believe it or not).
K’s second year of preschool was very different as a result of many factors that fell into place.
So, the “plan” of action to do next that was suggested was
- sensory OT
- using visual pictures as much as possible – get picture books depicting moods and emotions.
- get a behavioral plan and IEP – she’s going to need help easing into school.
- get into a movement program – specifically feldenkrais – to help with the mixed dominance issues – it will help coordinate her left and right sides. 8-10 sessions might do the trick.
- Family therapy to help all of us cope.
When I added up all the time and money it was going to cost to get specialists involved (and this was when gas prices were close to over $4 a gallon and everyone was at least 45 minutes away from us), I ended up looking for cheaper alternatives to things we could do to substitute that would have the same effect.
To see the things that we worked on at home, see this post:
The only thing “official” we decided to pursue is a preschool IEP. In our state, it was much easier to get an IEP at the preschool level than it would be at the elementary school level because the laws have changed and parents could no longer request intervention – it has to come through the teacher after RTI (response to intervention) techniques fail to work. It takes a lot longer and more red tape.
To get the preschool IEP, I went through the preschool state intervention program. In some states/school districts, it’s incredibly hard to get an IEP for SM. I anticipated a lot of difficulty. I was surprised at how easy it was and we were allowed to enroll my daughter in the state preschool intervention program if we desired.
So, last year, after much deliberation with my husband (did we really think she needed the special needs preschool?), we opted for dual enrollment. Dd2 spent 2 days a week at special needs preschool, and 3 days a week at community preschool.
If things didn’t improve at either place, I always held out the option of pulling her from one or both programs.
Initially she was doing much better at the special needs preschool (different teacher, different class, different kids, and we’d started ballet over the summer and spent lots of time at the parks), but minimally improved at the community preschool.
Rather than re-explaining the whole thing here, I’ll link you to the post about how things went.
Here is a summary of her second year at preschool –
And this is why life with a selectively mute child is hard (the stress of haircuts, dental visits, ballet recitals and all around social awkwardness and mama bear concern).
Someone on her IEP team went to a seminar in Chicago about SM that had a great impact on what they decided to do for dd.
January Progress (things are definitely improving).
And an update on how she was doing in March (huge improvement!)
So, yes…I do believe in the RIGHT circumstances, school can be very instrumental in helping a child make progress with SM. Unfortunately, from all the research I’ve done, what happened to dd was quite unique – because many parents around the internet hardly feel like their schools are doing enough of the right things to help their child. And on top of that, parents feel very intimidated by the school systems and have trouble advocating for their child’s needs.
August 4, 2009
Anticipating the school year with the selectively mute child
August 23, 2009:
So far, it’s only been 3 days into kindergarten, my daughter has had a very positive experience. This is how all the preparation and guidance for her last year came to fruition:
No, I do not think all her anxiety has evaporated – she still has lots of existential questions at only 5 years of age, but she made huge progress from 2 years ago, unmedicated, unhurried, un-“fixed”. Rather, she was gently guided from a place of silence to a place of expression. And just like her former early intervention preschool teacher said, I think she will be able to “shine like a star” now.
September 4,2009 –
One of my biggest concerns for her was how were they going to assess her reading ability if she won’t speak. She had two days of reading assessments where she read to the teacher and answered questions on leveled readers in the DRA reading program. She ended up at the end of the testing to be at a level 18, which indicates a second grade reading level. So, I guess I’m not going to have to worry if the teacher is going to tell that she’s a good reader, because she was able to show them herself. I’m so proud of how far she’s come.
September 29, 2009
You know, she looks normal (Or “What NOT to say in front of a child with special needs”).
September 16, 2010
From Selectively Mute to Student Council Representative
November 1, 2012
Five years later and still going strong.
April 19, 2013
For more information see these links:
Selective Mutism Group – (has a forum you can join).
For more personal accounts of selective mutism see these links:
Do you have a story about your selective mutism you want to share on my blog? Do you have a success story or update you’d like to share? We’d love to hear about it. Please send me an email at raisingsmartgirls at yahoo dot com to be included as a future post.