So what has worked for her selective mutism and anxiety

My 5.5 year old daughter who was diagnosed with selective mutism is going to attend kindergarten in the fall. She was diagnosed last year in May.

I wanted to post the things that specifically had a positive impact for my daughter’s anxiety and selective mutism. When we got the diagnosis, we also had a list of recommended therapies to help her. It was a really good plan of action, but when I added it up, I saw that essentially what would happen is that we’d spend a lot of money and time running to therapies.

So, uncertain as to how long she would need therapy and how little my insurance would cover, I decided to find out what my local school system had to offer. This is when we took our evaluation and got my daughter enrolled in the early intervention (special needs) preschool under a communication need at the school she will attend for kindergarten. I was uncertain what they would have in the way of sensory OT, especially when it wasn’t written into her IEP that way.

It turns out that she got some informal sensory OT anyway. She had access to a trampoline, they had messy play and art activities, and also access to the outdoor playground on warmer days.

Fortunately for my daughter, the special needs teacher and staff were really warm and engaging for her (even if I did butt heads with the teacher once), and they just seemed to have a way with her.

At home, I researched. A lot.

Here are some posts or links about what I found:

  • Information regarding selective mutism and retained primitive reflexes.
  • Books by Sally Goddard (a researcher who studied the role of primitive reflexes in learning and behavior and who was recommended by my daughter’s neuropyschologist for me to read):
  • The Well-Balanced Child (summary here)
  • Reflexes, Learning and Behavior: A Window into the Child’s Mind : A Non-Invasive Approach to Solving Learning & Behavior Problems.
  • Information regarding SPD
    Sensory Processing Disorder.com
  • Example of a Sensory Diet
  • Here’s a list of downloadable handouts and presentations from Dr. Cheng from his practice of child, adolescent and family psychiatry in Ottawa, Ontario, Canada. Included are some really informative handouts regarding anxiety, selective mutism and sensory processing disorders, which I’ve found to be really helpful in understanding things.
  • Also, I gained an understanding of my daughter’s emotional regulation difficulties through reading the Explosive Child book by Dr. Ross Greene.
  • I used sensory activities at home too,too, used the park a lot in the warmer months (especially the park adjacent to the elementary school she will attend) and enrolled her in ballet.   We invested in a mini trampoline.  It triggers the speech and language centers of the brain and it provides strong vestibular and proprioreceptive input.
    Creating a Sensory Diet at Home 

    Inexpensive Purchases for kids sensory diet at home

    The ballet took the place of a therapy called feldenkrais, because not only was I uncertain that I could get the insurance to cover it, the nearest place I could do it at was 45 minutes away, gas was up to $4 a gallon back then, and I had to figure out what to do with my youngest child who wasn’t in school yet, and get there and back between the middle child’s preschool times. It just wasn’t going to happen.

  • I also bought a Yoga cd set, Yoga for Kids, from Target. It’s about $20 for a 2 disc set (ABC’s and from Silly to Calm), and my daughter does that too.
  • We also finally bought a mini-trampoline in early January, and all the kids actually use it. One of the things we found out was that jumping on a trampoline is sensory activating, and it helps to activate the speech centers of the brain. I got that bit of information from the book, the Out of Sync Child Has Fun from Carol Stock Kranowitz.
  • And of course, in the warmer months, we’d spend at least 3 times a week at the park. Can’t beat the free sensory therapy there with all the wonderful climbing, swinging and running. Some parks actually had great new items for balance and even zip-lines.
  • I also created a Problem Solving Binder for the emotion coaching and my middle daughter really has really liked to see the pictures and read the stories with me. She also likes the book Mad Isn’t Bad. That is a concept that we had to work on a lot. It’s okay for her to be mad, but we had to work on the expression of that anger.

Sometimes I wish I had the time and the money in order to have professionals take care of the details, but in a bigger sense, I’m grateful to have been able to work this out on my own because in addition to saving money, I’ve learned so much by doing things on our own and see first hand that it’s working. Plus, the therapies are not forced and contrived and removed from her natural environment. She gets them as a normal part of her day and they are a part of her play.

At school, she is speaking now in both her early intervention preschool and at her regular preschool. They are also preparing her for the transition into kindergarten, complete with sending her on little errands with the speech therapist in the school so she can become familiar with the building as well as introducing her to the kindergarten teachers so that when it comes time to do the kindergarten developmental screening test next month she will have met the teachers who will screen her.

It’s working. Her confidence is building, and she even has started making headway in public settings. She responded verbally to the waitress when she asked what type of pizza she wanted at my other daughter’s birthday party, and then actually asked to buy a bottle of water at her ballet class last Friday. These are HUGE steps for her. I can’t believe the progress she’s made in a year.

I still haven’t figured out how to keep her from talking non-stop at home. Of course, that’s been the most ironic part of this whole journey. She never runs out of things to say at home. I do worry that in time, she will be the chatterbox at school, and then I’m going to have the opposite problem on my hands. But I guess we’ll cross that bridge when we come to it.

In my thinking and the neuropsych’s opinion, a lot of the standard approaches for SM (which in and of themselves are good ones) fix the symptoms but does not go to the source of the cause. This is what the neuropsych wanted to make it abundantly clear about. She knew of the techniques used in the field for SM (all the strategies employed for stepwise movement from non-speech to speech and the supplementary strategies of reduction of anxiety) which are all good ones to use WHILE working on the underlying problem – (which is the developmental delay in the limbic system – the retained primitive reflexes), but they aren’t going to the source. She strongly felt, if you catch it early enough, you can actually change the source of the problem, so that once it’s fixed, it’s fixed, and you don’t have the lifelong challenge and you don’t have to adopt a persona just to cope (as has been suggested by some that acting classes can help SM). You can be authentic without fear.

That’s what I feel is happening with my daughter. She is just so much more CONFIDENT than she was last year. That’s why I feel her changes are going to be permanent. If I didn’t really do my research about it, and actually SEE the drastic changes I’ve seen, I wouldn’t have believed it. I was hesitant and doubtful last year when we started this journey, but I am really convinced of it now.

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18 Responses to So what has worked for her selective mutism and anxiety

  1. jennifer says:

    It is great to read the update.

    Your comment of “These are HUGE steps for her.” rings so true with me. Other parents of “normal” children don’t realize that magical moment we feel when they respond to a waitress and order their food for the time. Congratulations on your continued success.

    I am happy to report my daughter is a chatterbox at school to match her personality at home. She was discharge from special ed before the holidays. The road we traveled from preschool to here (2nd grade) was long, but amazing. No more meds, no more therapy, just her….

  2. raisingsmartgirls says:

    Jennifer, that’s wonderful news! I know my husband and I are so in awe of hearing the words come out. I am so happy for both of us.

    Little by little she’s blossoming with confidence! I know there are some pretty tough cases out there where it takes so much more time and effort to see progress – fortunately, we weren’t one of them. We were so lucky we caught it early.

  3. el burro says:

    Sounds like you’ve been doing everything that would have been done in therapy, and sounds like it’s working! It’s so great that your daughter has a mom like you to help her manage her extreme temperament, and it’s so, so great that you’ve been able to help her sort out what she needs before she started “real school”.

  4. raisingsmartgirls says:

    Thanks el burro. I do have to give the ultimate thanks to my mom, because without her pointing me in the right direction, I’d probably still be fumbling around in the dark. I really had no idea what was going on and I don’t think I would have had a clue where to look.

    Her extreme temperament is mellowing a bit, and I’m so grateful. We had such rough days I thought I’d never see the end in sight , but fortunately they are now few and far between. We still have some minor issues, but meltdowns are less intense and her recovery time between disappointments is a lot shorter. What a world of difference!

  5. cha says:

    Hello. I am a 20-year-old girl struggling with selective mutism and I saw your blog while researching about SM in the internet. Have you seen this site — http://www.torey-hayden.com/research/interventions-in-EM-study.pdf ? I wanted to share it with you. It might help your daughter.

  6. raisingsmartgirls says:

    Cha – thank you so much for the link. I think that’s the first actual research paper I’ve seen on it and I appreciate that you linked it.

    I am glad for the internet to find such good information regarding something I knew nothing about a year ago.

    I wish you well with your struggles. I know it’s harder to treat SM when you are older, and I always worry about regression. I hope, since we have caught it early, and she has made major strides with her preschool class this year, we will see a continuation of progress next year too.

    It really breaks my heart for some who haven’t gotten help early enough. I know it is a very painful experience for young adults, and some feel so alone and depressed. I wish I could do something for them.

    I hope that by blogging about my little girl, I have helped others find information too.

    Peace,
    Casey

  7. Sydsmommy says:

    Hello, my three year old daughter was diagnosed with Sm this year. I figured it out through research and our pediatrician and private pyschologist also gave the same dx. She spent all day at preschool frozen and blank. She never spoke.

    It makes sense that the moro and fear paralysis reflex are still in play. I’m not sure what sort of treatment will get to the root cause.

    I am also dealing with extreme rage tantrums, refusal or inability to sleep at night and a sensory sensitivity to certain noises. Honestly some days I wonder how I am going to make it to bedtime. She is also very bright and very creative.

    Currently she attends a small (6 kids total) special ed class and she does speak a bit and go along with the class. I have an IEP in place.

    If you could direct me to a source that could help rewire the reflexes that would be so great.

  8. raisingsmartgirls says:

    If you were to read the and “Reflexes, Learning and Behavior” and “The Well-Balanced Child” books by Sally Goddard (Blythe). you would specific information there (check your libraries for them or you can order it online from Amazon.com). In the back of the first book, she details how SM is related to the retained primitive reflexes. In the second book, she talks about each primitive reflex, and what can go ‘wrong’ if they are retained, and then goes on to talk about what helps. She also recommends listening to certain types of music (like Baroque classical music – she mentions Mozart in particular) to help as well.

    What I think re-wires it is plenty of gross motor play – really, those things that input sensory information to the brain to help the child be aware of their bodies. Climbing, balancing on things, crawling through tubes, spinning on tire swings, ballet, yoga.

    These types of things promote that mind/body awareness/connection and balance. There seems to be a lot of overlap (at least for my daughter) with her SM and sensory regulation issues, so a lot of the things that you would find in The Out of Sync Child Has Fun book for vestibular/proprioreceptive activities have been great for her (tire swings, jumping on a trampoline, etc).

    You could do formal OT, or use something like Feldenkrais movement therapy (which we ended up not needing to do), or you can get these kinds of activities at the park or by doing ballet or yoga for kids (either classes or getting videos of them).

    I really truly believe doing all this – spending plenty of time at parks, doing informal SPD therapy at home, along with having understanding teachers that help by using things like stimulus fading and shaping – really helps. Here’s a link: what I mean by stimulus fading and shaping.

    Time is also a factor. I mean, you caught it early enough, so that is wonderful, but it still will take about 12 months – 18 months or so to see a permanent change. But all the while, if you are working on it, once the change starts, it should carry over and be lasting.

    Good luck to you on your journey to help your dd.

    I emailed this same info to you so I hope you get it soon.

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  10. Lara says:

    Hi,

    My daughter Ava was diagnosed with SM, OCD and Sensory integration issues (disorder) about 15 months ago. She is almost 5 (will be 5 in January). I’m so glad I found your blog. We have someone we can “shadow” through the school process. She has been receiving services through early intervention in our school district for about 14 months in speech therapy (it’s not really appropriate in the traditional sense, but it’s one of the only avenues available) and OT.
    She is in a full time K-4 program this year and continues to receive those services. We are in the process of visiting schools in the district in anticipation of applying to them after the first of the year.
    We have yet to have any huge breakthroughs. Although she loved her therapists at her preschool last year and like your daughter once she starts to talk, you can’t get her to stop. However – she has yet to talk in a classroom setting or to any other adult. (My mother and family have yet to hear her speak. My husband’s family has heard her speak in limited circumstances of 1-2 people)
    I have my concerns for next year in that it will be her third new place in three years. Knock on wood we will have made the right choice in schools (and the school system will have listened to our request) and she will be there through 5th grade.
    Anyway – I’m looking forward to learning more of your story and following up on your links.
    Lara

  11. raisingsmartgirls says:

    Have you gone in to observe exactly how they were interacting with your daughter?

    Does she bond with any of the children in the class? Sometimes if you get play dates with one of the children in your daughter’s class outside of school it helps them while they are in the school.

    I wouldn’t give up hoping. I think, especially because she is just now 5, and she has been getting some therapy already, that perhaps her development will start to grow between 5 and 6. I am not certain of that, but I think, based on the fact that she is reading already (based on the other post I read first), that what else is going on is asynchronous (uneven) development. In gifted kids this means that one area, say cognitive development, is far in advance of emotional development and it causes problems.

    I’m wondering about the sensory issues. Is she OVER-sensitive or UNDER sensitive to noise, bright lights, touches? Does she have vestibular issues (a good indication is if she gets easily carsick)?

    And the OCD issues, what specifically are they?

    I’m purely speculating right now. I think there is a HUGE link between selective mutism and giftedness (some kinds of giftedness, anyway). OCD is a way of dealing with the extra stimuli and the anxieties too.

    I would love to explore this, and see the incidence of giftedness among selectively mute individuals. Not that giftedness causes SM, but that the traits of giftedness contribute to it. You can’t be so “switched on” to the world around you without it being overwhelming at times, you know?

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  13. karen robson says:

    i need help!!!

    my daugter is comming up to her 18th birthday and still hasnt been told she has sm,but has gone though all her school life not talking at all or even to family members.what treatment should i try and how is this availeble?

  14. raisingsmartgirls says:

    Well, I might direct you to Meagan’s vlog and ask her, since she is in her 20s. She might have some insight for older children. Or your daughter might at least be able to email her and “talk” with her about it. Maybe the two of them can brainstorm some ideas.

    http://www.youtube.com/user/maehb

    Your daughter is old enough to research a little about her condition. Maybe ask her to help you come up with a plan. I would take a look at the selective mutism websites and then share them with her. Don’t make any plans to “fix” her because she’s not “broken” but work with her to find something to reduce her anxiety.

    http://www.selectivemutismfoundation.org/

    http://www.selectivemutismfoundation.org/

    http://www.selectivemutism.org/

    I’d take a look around there, because most of my suggestions work best for younger kids because the mutism hasn’t become a part of their habits.

    The most difficult aspect about selective mutism is that the longer it persists without intervention, the more likely therapy and possibly medications *might* be necessary because the mutism becomes ingrained. Still I wouldn’t give up hope.

    Has your daughter had sensory issues too (sensitivities to noise, crowds, lights, tags)?

    I know something that has worked sometimes for younger children, but I don’t know about older children. Jumping on a trampoline activates the speech centers of the brain. I found that out from the Out of Sync Child has Fun.

    The other thing might be Yoga and Tai Chi classes. These are gentle movement exercises. It won’t actually make her talk, but what it would do is give her ways to reduce her own anxiety naturally. She might be able to transfer skills to social situations.

    Lots of time outdoors if she isn’t already. I know this sounds weird. But fresh air, hiking, getting in tune with nature.

    Lots of love and gentle support. Your belief that she can talk when she’s ready to.

    I think if you focus on treating the underlying anxiety and not worrying about the speech, you might find she finds her voice.

  15. Caroline says:

    Hi,
    I also read your earlier post on your daughter2 🙂 and not speaking in school….

    Apparently, my teachers were very worried about me in kindergarten. I didn’t say much or talk to other kids for half a year…just observed everything. I kept that trait. Every new school I went to, I’d be checking things out extensively before engaging…to the point of truly worrying the professionals. It’s funny now, but it’s been quite a path. So, I think I can relate in ways. It always worked out in the end, from what I can remember it’s just that I needed to process all the intricacies of the environment before I could decide on what I wanted to do? Kind of like, studying the tribe 🙂 Now, that I’m “all grown up” all that observing comes in really useful. Most social settings I can categorize really quickly, and I understand the deeper dynamics a lot better than most do because I’ve taken my time to study them before. I’ve really grown out of any of those social issues I had, I’ve even worked as a teacher, so it all turned out well in the end 🙂 I remember when I was about 16, I was fine talking to people I knew and listening to strangers…but I couldn’t figure out how to strike up a conversation with new people. I actually spent about 1,5 years of intense social-training bar-hanging bootcamp 😉 My mum didn’t like me going out, but seriously, it was the best social training I ever had, meeting people all the time and needing to find a way to have engaging conversations with them. I’m pretty good at it now. It’s a skill is all.

    I’ve read some research suggesting that for Visual Thinkers…it’s harder to keep our minds clear, because we store things in pictures (and pictures take up loads of space). I know I can still work myself up into a state when I “know” something, but it’s a kind of picture of sorts, and not something I can talk about (yet), that can feel VERY frustrating, (and think it explains some of my childhood tantrums). The only way to deal with it for me is to paint. I’ve always done art & crafts and it’s always been an outlet, and more, a way to process understanding. And then, once I’ve painted it, I can usually get my thoughts straight too. (I tend to paint intuitively, and play around with shapes until it “feels right”, and then, there is always a sense of huge relief! Pretty much how kids paint 🙂 )

    You know, sometimes I think, for those of us who have the ability to truly listen, it can be really hard to speak up..there are just so many people who wish to be heard but are not willing to listen and I think, especially when you’re little, breaking through the dynamics of that takes lots of impressive steps. People will tell you to speak up etc, but often, they don’t really want to hear what you have to say.

    I think it’s really great you found loads of DIY solutions. That way, you’re daughter is learning how to take care of herself, in her own environment as you say, and develop tried n true solutions that work for her.

    Anyway, thought this might be helpful, since I feel I was a lot like your daughter when I was little, from how you write about her anyway.

    Nowadays, I write about strategies for grown-up HSP’s over on my blog, any requests on topics are welcome and I’ll give them a think 🙂

  16. raisingsmartgirls says:

    Caroline –

    Thank you for your lovely reply. I quickly took a peek at your blog and I’ll be back to look at more.

    I’m on my way out the door, but I wanted to thank you for your reply. I’ll be back to comment further, because I do agree that art is a great way to process experiences, organize thoughts, and express feelings.

    Casey.

  17. Annie says:

    My daughter turned nine this year, and still completely mute in school, boy have I got a lot of reading to do in the next few weeks and Thank God for finding this page along with a very interestin link fron Cha… (Torey-Hayden.com) I will surely read all of this info and will look into the book and therapy suggestions….Thanks so much for this!!! I am also sharing this info with my daughter’s school tommorow morning….God bless!!!!

  18. agneslzh says:

    Reblogged this on If you could touch lives… and commented:
    I’m glad I stumbled upon this blog entry when I was doing my extra research. Very insightful!

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