Our daughter’s selective mutism journey

Here’s a post about how we came to suspect my middle daughter had selective mutism when she was 4.5.

The Silence Within – is my daughter a selective mute?

We took her to a pediatric neuropsychologist in April 2008, who was very good at what she did and very thorough.

This is what the testing looked like for her

Initial screening

First Testing Session

Second and third testing sessions

Testing sessions are over

Meeting with the Neuropsych for the results

Official diagnostic report

She pointed me in the direction of what is going on. 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 that is right or wrong. I always kept that option (homeschooling) open myself.

Does a child *need* 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, but will accept ANY kind of nonverbal response and eventually hopefully 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.

This is a great handout you can give to teachers while you try to work on the SM.

SELECTIVE MUTISM SUGGESTIONS FOR TEACHERS

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 there.

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

1. sensory OT
2. using visual pictures as much as possible – get picture books depicting moods and emotions.
3. get a behavioral plan and IEP – she’s going to need help easing into school.
4. 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.
5. 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 $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:

So what has worked for her selective mutism?

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 dd2 (dear daughter who is my second child) in the state preschool intervention program if we desired.

So, last year, after much deliberation with dh (did we really think dd 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.

Intially things were 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 -

November 2008
Partial progress in November

PT conference from heck

Results of advocating for my child after PT conference from heck (ie having to play hardball)

January 2009

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).

March 2009

And an update on how she was doing in March (huge improvement!)

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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.

An addendum:

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:

So is she no longer selectively mute?

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 – Reading assessments

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.

For more information see these links:

Selective Mutism Group – (has a forum you can join).

American Speech Language Hearing Association

Selective Mutism Center

Selective Mutism Foundation