Researching Selective Mutism

When Maggie was diagnosed with Selective Mutism it was as if all the puzzle pieces started falling into place. Although the diagnosis felt like a crushing blow at the time–we had already been struggling with her Apraxia of speech for several years and now we had another diagnosis to grapple with–in another way it was a relief to finally have a name for what we had been dealing with all along. As I read through the symptoms I was not surprised at all by the diagnosis. In many ways, getting this diagnosis lifted a huge burden as we could finally begin to work on a cure. Up until this point I didn’t know if she would ever be able to make a friend or take a ballet class or speak to her aunts and uncles–all things that most kids take for granted.

I joined a Facebook group for Parents of Children with Selective Mutism and began reading and researching. It was so valuable, and I gleaned so much information about her condition and about how to help her. The doctor at the IAC told me that she would need lots of opportunities to practice “exposure therapy”. She suggested starting out by walking down the road and waving at the cars. Eventually we might progress to speaking to a clerk at the grocery store. It sounded like it would take a lot of time, and be difficult to implement in the midst of our busy schedule. I was overwhelmed and vacillated between hope and despair. Things went on that way for about 6 months. We did not change much in Maggie’s life. We continued to work on speech therapy–at home. We knew what we were dealing with now and it had a name, but we didn’t really know how to cope with it. I think I was still in denial as I believed it would be something we could handle on our own.

Over the course of the next 6 months I researched and read as much as I could. Through my Facebook group I found some extremely helpful videos from Dr. Steven Kurtz about Living the Exposure Lifestyle, among others.

I began to try to implement some of his strategies and I also recognized that Maggie would need intensive therapy to overcome her Selective Mutism, so I began researching intensive programs and interviewing doctors.


Diagnosed with Social Anxiety and Selective Mutism

Maggie could not handle speech therapy with her trusted therapist unless she was in our home, but I thought little of it. She had always been triggered by institutional environments and I assumed it was orphanage trauma. At that time, she had been speaking at home for less than a year, and it seemed normal that she would only speak to her family and to her speech therapist since her articulation was so poor that others couldn’t understand her.

It was obvious that she didn’t feel comfortable speaking to peers. She often stood at a distance and watched as her sister played with friends but she was afraid to join in. Sometimes she followed silently but she was uncomfortable with group games like tag and would never join in. She would not speak at our home school co op except to occasionally whisper to me. I had been used to communicating on her behalf for years, since she couldn’t speak much at all before she turned 5 years old. Everyone in our church and home school community loved and accepted Maggie, just as she was. No one pressured her to speak and we all just accepted that she struggled with speech and was “very shy” about it.

International Adoption Clinic
In September 2018 I took Maggie to the International Adoption Clinic in Birmingham. We go there every year for an evaluation. She gets to see three specialists who only treat children who were adopted internationally. The expertise of her IAC pediatrician, occupational therapist, and family counselor have been a priceless resource over the past 6 years since we brought Maggie home. They have helped us navigate orphanage trauma, problems with sleeping, motor planning struggles, and a variety of other struggles brought on by Maggie’s difficult start in life.

This visit is always combined with our Cleft Team visit, where she sees multiple specialists from University of Alabama Birmingham, including a speech therapist. Maggie’s speech had never been evaluated by the UAB speech therapists since she would never speak to them. I began taking videos at home and showing them to the therapists at our annual visits so they could hear her speech progression, and I continued to assume the hospital environment was one more institutional trigger for her anxious behavior. Not only did she refuse to speak to the doctors but she didn’t want to speak to me either, and she would try to crawl under my skin, it seemed, in her efforts to avoid them.

Diagnosed with Selective Mutism
It was at the IAC in September 2018 that I first heard the term “Selective Mutism”. The pediatrician listened as I told about our failed experiment with speech therapy at the school, and about how Maggie refused to speak to anyone outside of our family. She was, by this time, speaking well enough at home that we knew she was capable of speaking to friends and other adults she knew well, but she wouldn’t. She couldn’t ask for a cookie at the grocery store. She couldn’t say “Hello” to her Sunday School teacher at church. She couldn’t say “Yes” if a classmate asked her to play.

She had nonverbal signs of anxiety as well. She struggled to look people in the eye when she was not in our home. She cried when people asked her a question unless I jumped in immediately to answer for her. In fact, she cried any time attention was directed toward her. I think this is one reason it was so hard for her when anyone corrected her, as it meant she was the focus of attention. Even positive attention brought on tears as she didn’t want any one outside of our family to notice her or speak to her. She relied on her sister to speak for her in every interaction with peers. She could not bring herself to give someone a high five or even to wave goodbye. I had to remove her from the classroom at our home school co op every week during the final 30 minutes when the class played review games, as the stress of unpredictable games like hot potato and duck, duck, goose were overwhelming to her. She did not want to participate and didn’t even feel comfortable watching others play.

The IAC pediatrician has been following her for several years but at our last visit Maggie had just started speaking at home. By this time it was obvious she was capable of speaking but could not bring herself to do so. I had assumed that her unwillingness to speak was a choice, but at this life-changing appointment I realized for the first time that Maggie was struggling with a crippling anxiety disorder. She needed help to be able to break free of it. This began a period of much research as we began to learn about Social Anxiety and Selective Mutism.

Afraid to speak at school

With all of that going on, I always assumed her quietness around strangers was due to this strong shame core. She wasn’t talking much at home for years, so it didn’t seem too out of place when she wouldn’t talk in public. Still, everyone felt like they were walking on egg shells around her. Even the slightest thing could embarrass her deeply, and she would dissolve into tears.

By the time she was 6 years old she was finally speaking at home, in full paragraphs. Although we home school Maggie receives speech services through the public school, due to her disability. She had been with the same school appointed speech therapist for 3 years, working with her 3 times a week in our home, and the authorities at the public school decided it was time to try speech therapy at the school again. Our dedicated, amazing therapist had been coming to our home after school hours for 3 years so that Maggie did not have to go to the school building. We had tried it before and Maggie wouldn’t speak in that environment. I thought the school reminded her too much of the orphanage since institutional environments seemed to trigger a lot of stress.

At that time, she was not speaking to anyone outside our family besides our speech therapist–that was the only other adult that she trusted enough. She hated speech therapy and often expressed animosity toward the therapist! She would say “I only talk to her because you make me.” Progress in therapy was very slow, in part because her articulation disorder and apraxia are both severe, but also in part because she was so unwilling. I had to be her primary “speech therapist” as I was the only person she would willingly work for.

Speech therapy at the school building
Beginning in August 2018, we went to the school for speech three times a week for 2 months. Maggie never opened her mouth during that time, refusing to participate in speech at all. It was frustrating, as she desperately needed speech therapy services! We tried meeting outside the school on the playground many times, and on a bench out front of the school, but nothing worked. Eventually the therapist said this was ridiculous and that she would come back to our house. The moment she walked in our front door Maggie started chattering away, just like she always had. Our suspicions that the school was an anxiety trigger were confirmed, but I still assumed it was due to orphanage trauma. It never occurred to me that it could be anything else.

Orphanage Trauma

I am having to paint with a very broad brush since I let this blog go for 3 years! Lots has happened that kept me too busy to care about blogging, but it has been incredible to see how the Lord has worked during these years!

When Maggie was 4 years old she could barely speak two words together, due to her Childhood Apraxia of Speech condition. This neurological condition made it hard for her brain to tell her muscles what to do. At 2 years old she finally learned to walk. She was 3 1/2 before she learned to crawl. And at 5 years old she was finally beginning to speak a bit–but only at home.

A strong shame core
I knew from the time we brought her home that she had severe fear of strangers, but I didn’t know what to call it. I thought it was just orphanage trauma and a strong “shame core”. These are words we hear a lot in the adoption community. I remember grocery shopping with her shortly after we brought her home. She was probably about 18 months old. I put a carton of eggs in the cart and she reached out to touch them. A stranger smiled at her and said “be careful!” She immediately broke down sobbing for at least 15 minutes, as she was so deeply afraid of doing anything “wrong”. For years it was hard to tell her “no”, or anything that even seemed like a ‘No’ without her falling apart. Even warning words like “be careful” made her feel very threatened, especially when coming from someone she didn’t know and trust. A word like “No” was very traumatic.

When she could finally speak, if we corrected her, she would say things like “You hate me. You hate me because I hit my sister.” We worked very hard to help her with her shame core, and to get her to a place where she could hear that she had done something wrong without jumping to the conclusion that she was intrinsically bad and therefore hated. I say this in a few words but this battle took years to win–in fact, we are still fighting it. Over the course of months and years we progressed from inconsolable crying to refusing to sign or say “I’m sorry”–since that was an admission of guilt–to “you hate me because I am not perfect” to her asking “do you love me?” many times every day (both when she had done nothing wrong but even more so when she had).

It’s hard when you can’t be perfect
We are finally at a point where we can correct her when needed without her falling apart. Keep in mind she rarely needs correction as she still tries very hard to never do anything wrong. And it is still very hard for her to admit guilt if she has done anything wrong! Yesterday our dog threw up a piece of salami, while Maggie was eating salami at the table. I asked her, “Did you give a piece of your salami to Bristol?” and her response was “What will happen if I did?” I replied, “Nothing will happen. But someone gave her a piece of salami and I want that person to know it made her sick. If it was you I will tell you not to give her salami any more. If it was someone else I want to tell that person so no one gives her salami. Was it you?”

Her response was “I don’t know. I can’t remember.” Discipline, for Maggie, typically means nothing more than being told “That was not the right thing to do. Don’t do that any more.” But it is still very scary for her to hear those words! I was pretty sure it was her, but she still struggles to say “I did it.” I changed my question and said it a different way. “I am not sure if she got the salami yesterday or if she ate it today. I think you are the one who gave it to her. Did you do it yesterday or was it this morning?” Now the focus was off of “who did it–was it you?” to “when did you do it?” and she was able to say “I gave it to her this morning.”

It is hard to imagine what she experienced during her 13 months in the orphanage. One of my criteria in accepting a referral was that I wanted the child to be “as young as possible” in hopes of minimizing the loss and trauma they would have experienced. With all of my other babies I felt extreme stress if they had to cry for even one minute before I could get to them! I have been told that in Maggie’s orphanage the doors were closed at night and never opened again until the morning. I can’t imagine the terror of being in a room with 25 other babies, many of them crying unattended during those long lonely nights, with no one there to comfort them. Even though we adopted her shortly after her 1st birthday she somehow learned that she had to be perfect in order to be loved. We will likely spend a lifetime undoing the trauma of those 14 months.

Communication Device for Childhood Apraxia of Speech

Life got busy and I haven’t added anything to this blog since January 2016. As I write we are knocking on the door of 2020.

When I last wrote, Maggie was 3 1/2 years old and still struggling to say her own name. Apraxia hit us hard and speech therapy was very time consuming. I would love to go back and add some of the videos of Maggie’s progress if time allows, but for now I wanted to post a fast forward recap.

Low tech communication tools
I started by asking the school to help, but they just gave me a low tech option (some laminated picture cards). We tried to make cards with some of the foods Maggie likes, the people in her life, etc. and she could point to things like “milk” or “TV”, etc. to communicate her wants. This was helpful but not nearly powerful enough, and we had to keep making more cards if she needed more words. It was hard to keep all the cards together and carry them around so we were mainly using them at predictable times like meal time to give her food choices.

Pediatric Assistive Technology Center
We were able to get a private evaluation at the Pediatric Assistive Technology Center in Atlanta through Children’s Healthcare of Atlanta (CHOA). They were amazing to work with. They helped us pick the right device and “language”, and provided a lot of support in terms of how to set it up, tweak it along the way, etc. They also advised on some apps we could use in the interim while we waited for her device, but the app they recommended was pretty expensive and not covered by insurance. We were trying to decide if we should spend a few hundred dollars for something we would only use for a couple months while we waited for the device but ultimately the clinic loaned us a device to use. I am so thankful they let us borrow it as the insurance process took many months before it was approved!

Getting a Communication Device
She was allowed to borrow a Samsung Galaxy (?I think) tablet with the NovaChat program. Within minutes of being handed the device she was saying complicated things with it that she could never say verbally. It was an incredible window into her mind.

A window into her mind
Two memories stand out from her initial evaluation, which was held on March 25, 2016. At that time she was 3 1/2 years old. The initial evaluation was meant to decide whether she was smart and capable enough to handle the device or not.

The therapist was prompting her with questions and trying to get her to select icons on the screen so the device would speak for her. They were trying to get her to touch buttons to make it say “I want the (color) marker”. The SLP gave her a choice of 4 markers (blue, gray, pink, and yellow). She was supposed to touch which color she wanted, and she kept refusing.

Thinking she didn’t really understand the SLP selected the pink marker and held it out for her, saying she could have it if she would just touch the “pink” button. Maggie picked up the device with a twinkle in her eye and selected the icons to say “I want two orange markers”! Which wasn’t one of the options, LOL!

Another time they were trying to get her to use it to say what she wanted to do…play kitchen, color, read a book…she selected “go home”. Yep, that girl has spunk.

As you probably know, dear reader, Maggie is adopted from China. Her sister is a blue eyed blonde. During the initial evaluation the therapist got out a doll for Maggie that had blonde hair and blue eyes, and offered to let her play with it if she would use the device to say “want doll”. Instead, she used a combination of sign language and the device to say “yellow hair, sister happy, where is a doll that looks like me?” Be still my heart. I later wrote to a friend, “I am so excited to see how this will open her world. She has so much she wants to say!”

It is incredible to think that although she was 3 1/2 years old at the time of the evaluation we learned more about the workings of her mind during that one hour evaluation than we had up to that point, since she had no language ability to tell us what she was thinking beyond the most basic concrete thoughts. I love this little girl so much, and am constantly astounded at how deep these quiet waters run.

Lengthy insurance appeal process
Suffice to say, we knew within minutes that not only could she handle this type of device, but it would open a new world for her. We brought the loaner tablet home and began the very lengthy process of getting insurance approval for her to have her very own. The programming on a communication device is expensive, and the price tag was around $10,000 at that time. We had to appeal–twice if I recall–and provide lots of documentation. It was tedious and time consuming but in the end we won our appeal and Maggie got her own device, after almost a year-long appeal process.

Incredible and Immediate Results
The day we brought her loaner tablet home we experienced something incredible that we never could have anticipated. Yes, she was using the tablet to communicate for her but somehow it also opened up her own speech abilities in a way that nothing had ever done before. Within a few hours she started speaking in simple 3 word sentences. Up to that point it was hard for her to put three syllables together, let alone to speak in a sentence. She loved playing on my iPhone and would frequently say “iPhone” to me. Within a couple of hours of using her tablet she came to me and said “want play iPhone”. Within days she was using pronouns for the first time. Research has shown that communication devices can help people not only to communicate electronically but also to develop greater speech abilities. We knew this was true but had no idea that it would be so effective and so quick. Her speech began to improve daily, as if she realized for the first time that she could affect her world with her speech.

Her Apraxia was still an issue and she struggled to get the words out verbally, but for the first time she began putting words together and although the tablet helped her immensely she quickly realized it was faster to say things with her voice instead of the tablet. Somehow the tablet catapulted her to a place where she was more able to use her voice. I wish she could have gotten speech therapy for her tablet. She did get sessions every few months from the clinic that prescribed the tablet. Our local school system has a therapist for augmentive communication devices, but we had to choose between that therapy and speech therapy and of course we had to pick speech therapy. She was not allowed to split her prescribed therapy between the two. At that time she was getting speech 3 times a week from the local school and we decided to keep plowing forward with speech in hopes that one day she would be free of the communication device. We hoped it would not be a permanent solution but one that would buy us time and a window into her mind while we worked on speech.

Using it for Show and Tell
We have been involved for several years in a home school co op that has a public speaking component. Even when Maggie could speak well enough at home to do a show and tell style presentation she seemed light years away from being able to do one in that setting. For two years she would dictate her presentation to me and I would type it into the device. For her presentation she would press a button (and eventually several buttons, to replicate speaking individual sentences) and the device would give her presentation to the class. This enabled her to participate in an important part of class that would otherwise have been completely inaccessible. It was very tedious and time consuming for her to explain what she wanted to say verbally, even to me, and no one in her class would have been able to understand her, even if she could have tried to tell them. It also helped her begin to form friendships with others in the class, as they had never heard her voice and had no idea what she liked. She could put her witty personality into her presentations using the device to communicate what she wanted them to know.

We eventually were able to phase out the device at home, after a year or so, as she became more fluent in speech. During the time we were using the device she went from only putting 2 or 3 syllables together to speaking in entire paragraphs at home. As her speech became more complex and more abstract we would use the device when we couldn’t understand her. The more she spoke, the harder she was to understand. When she was talking about her breakfast, which was right in front of her, I could always understand what she was trying to say. She wanted milk, not juice! But once she started telling about dreams and feelings–abstract things which had never been possible before–it became almost impossible to understand more than the gist of what she was trying to say. That was very frustrating for her and for me. The device was often able to serve as a bridge to communicate an important word when I could not grasp what she wanted to say. The device was only as good as what we programmed it with, though, and there were many times were she had to say “forget it”. She often had to circle around what she was trying to say, unable to tell exactly what was on her mind either verbally or with the device. When learning to speak German and Hungarian I experienced the same things…not knowing a particular word meant I would need 10 other words to try and communicate the concept. It is possible but frustrating!

Still working on expressive speech
Now, at 7 years old, that still happens. Sadly, there is still so much she wants to say that we can not understand, so we are still working constantly on articulation! She is saying so much more and we understand so much more as her articulation continues to improve. She is very smart and a very deep thinker, though, and many of those thoughts cannot be communicated even today. Sometimes it shows up when she can’t explain what she was thinking. Often she can’t express her feelings and resorts to saying “I am never playing with you again” when she wants to say “I feel jealous” or “you hurt my feelings”.

Selective Mutism Intensive Therapy: Days 3 and 4

Day 3

We had decided that on Day 4 we wanted Maggie to take a class with some other kids and give a show and tell style presentation to a small group of adults,in order to replicate what she is expected to do at co op every week. Therefore, a big part of Day 3 was spent working toward those goals.

Maggie and I had prepared her presentation the night before but on day 3 she spent time giving her presentation to Katelyn and talking through what that would be like to give the same presentation to a group of Katelyn’s friends the next day.

She also practiced it in the room where she would be giving it, and we saw what that room looked like. She had another “speech therapy session”, this time with a different counselor posing as a speech therapist, and that also went well.

We went to the park and practiced initiation by asking some other kids to play. One of them seemed to have SM as well, since she would not speak. They did manage to play some Eye Spy, and the therapist tried duck duck goose again but with the same lack of success as on the day before.

We went back to the office and Maggie spent time making some difficult FaceTime phone calls to our Pastor and to her Uncle, speaking to both of them for the first time ever. She actually enjoyed it!

Martial Arts Private Lesson
At the end of the afternoon we went to the martial arts studio where Maggie and Katelyn got a private lesson in Karate from Master Brandon. Maggie was a little nervous but she participated and did everything Master Brandon asked her to do, including reciting/repeating after him some of the rules of the studio, and bowing, making fists, punching, etc. Her favorite part was breaking the practice board, even though she wasn’t able to break the real board. This was a big step for her and I was really nervous for her as she was both excited but also a bit scared. She did it though, and it was great!!

Brave with an unusual communication partner
That night after therapy Maggie and I drove about 30 minutes to a shopping center to go to Barnes and Noble and also get some “comfy princess dolls” at a Walmart there (we can’t find these in our area). She spoke to one of the workers at the Walmart, and later that evening she spoke to a woman at the restaurant while we waited for our to go order. We sat at the bar at the restaurant, since there was no other seating. There was a woman sitting beside her who had very black hair and a lot of rings and tattoos, and very long fingernails.

This woman would have been challenging for Maggie to talk to even a few days prior to that. She was nervous but she wanted to ask the lady about her rings, and she did! We used the same type of techniques for fading in and me prefacing it so the person would understand what she was saying. The lady was very kind and it was encouraging.

Stages of Grief
That night Maggie went through all the stages of grief as she came to terms with the fact that the next day she was going to have to take another karate class and this time there would be other kids there. She was really stressed out about that. She started with denial, insisting that she would NOT be doing a class the next day. Then bargaining—could we go home a day early? We don’t need to do this any more. Then came anger—she was SO mad at Katelyn for making her do it. She kept saying, “She is going to say No, you HAVE GOT to do it. You HAVE GOT to do it!” After anger came depression, and she cried off and on for at least an hour about having to take the class the next day. It was sad and I was really wondering if we should skip it, as I thought we were pushing her too far.

Finally depression gave way to acceptance and she started asking questions like “What if I cry in front of the class?” and we were able to talk about what could happen and how to handle it. She was also able to practice jumping jacks that night and Simon says, and push ups, which were all things that Master Brandon had prepared us to expect the next day. I went to bed relieved that she was taking steps to prepare, and had accepted that the next morning we would start the day with a karate class.

Day 4:
Maggie was very scared about going to the karate class that morning. She was so nervous, and so was I. I had downloaded some “brave songs” and made a play list so we listened to that and I prayed for her on the way to class. We got there early to give her time to adjust to the environment. I was encouraged that the spot where we were told to put our things had Chinese characters for “hope, faith, and love”. Love was Maggie’s Chinese name, and I pointed out to her that there was a picture of her Chinese name on the wall. It was really encouraging and I knew the Lord had gone before us.

Some kids started showing up before the teacher. They introduced themselves and asked Maggie if she wanted to learn a karate kick before class. They were so kind, and one little girl thought she already knew Maggie and adopted her as a friend. It was going so much better than feared, and Maggie was able to conquer each part of it, one bit at a time. They took attendance and she said she was here. The kids asked where she was from and she told them, and one was interested because he had family in Georgia. They started the class, and Maggie often had to look to Katelyn for reassurance or to know what to do, but she was able to hang toward the back and do everything. They ended class with a game. Maggie was having fun and playing, and even about to win but at the last moment she was put out of the tag-style game.

She started crying and I had to take her out of the room. I think part of it was the pent up anxiety of the whole thing, and part of it was the fact that she struggles with losing unpredictable group games so she always avoids them. She may not have even realized she was going to have to play a game but she had hung in there and done it. Once she realized she had lost it was all too much and she broke down in tears.

She was so embarrassed that she cried and for days afterward when I said she was successful she wouldn’t admit it, as she thinks that her crying made it a failure. But she did great for 55 minutes out of 60, and when she was done crying she was able to go back into the room and make her bow and thank the teacher, so she recovered and did what she needed to. I felt it was a great success!

She decided that she doesn’t want to take a karate class but she could possibly do gymnastics or ballet now that she knows she can successfully navigate a class.

After class we went to the cat café to celebrate. This cafe was an amazing place where rescue cats wander around as people eat their lunch, play board games, take yoga classes, etc. This was very low key and was a reward for Maggie. She loved it so much that she wants to go back to Michigan to have her birthday at the cat cafe!

Maggie spoke to some of the people at the café and she enjoyed following the cats around. It was a practice in initiating but also the most fun she had all week, so a fitting celebration. She also got to Facetime with her co op teacher, and with her adult sister in law while we were at the cat café. These were two very important people in her life whom she had barely spoken to before.

Show and Tell
After cat café we got lunch and went back to the office. She talked with Katelyn a little bit and got ready to give her presentation to the group of adults. After making it through the Karate class it felt like nothing would be too hard for her, and she sailed through the presentation with seeming ease, including answering their forced choice questions (which we had anticipated, scripted and practiced ahead of time).

After that we had a time of wrapping up (me and Katelyn) and talking about goals and plans for transitioning back at home. Then Maggie and I headed to the airport. At the airport I wanted to go into a store to ask about a product and Maggie asked if she could be the one to ask them. What a turn-around!! She has continued to make amazing progress since our return home.

Following Up From Therapy
We got back from Michigan on a Thursday night. I was able to arrange to have a special meeting of her co op class the following Tuesday, even though in Georgia we were already on summer break. Her teacher was willing to teach and Maggie’s classmates attended (all but 1).

We set it up for her to practice all the things she had not been able to succeed at before. And she was able to do everything! She was able to repeat the verbal memory work, try some hand motions, do a hand motion by herself when called upon, roll the dice for a review game and participate in the motions like marching, jumping jacks, etc. during memory work time.

We also did presentations and she gave her whole presentation on the gray catbird, verbally!! I asked her before class if she wanted me to write out forced choice questions on index cards to hand out to her classmates for the question and answer time, but she said she would just let the kids decide what to ask and she would answer whatever they asked her. And she did!

Then we did art and her teacher asked her to tell about her picture, and she was able to do it. This was the activity she had failed at just a few weeks prior, when we had left class crying after what had been her “best day ever” at that point. How far she had come!! Everyone was absolutely amazed and many of us moms were teary-eyed.

After that we had an unpredictable game (hot potato) and when she got the potato she had to recite her x10 facts, and she did that by herself as well! All the moms were holding their breath, but she did it! It was amazing. Afterward we went outside on the playground for group play. I wanted her to initiate playing with other kids by asking if they wanted to play or if she could join them. She was able to do that two times and had a successful time playing. Then the class went to Chick fil a and had lunch, and she ate with the other kids and also played there on the indoor playground.

When lunch was done we came home and had a private swimming lesson to cap off the day, and she did everything he said to do—including jump off the diving board to his arms! What a brave day. I was so incredibly proud of her!!

I am dating this post June 2019 but in reality it has been over 6 months since our time at Thriving Minds. Maggie continues to make breakthrough after breakthrough. This school year she is taking ballet and participating in a once weekly drop off co op class. She has friends and is acting like a normal child. I no longer cry when she does these things, as it has truly become part of our “new normal”, but I do sometimes stand back in awe at how much she has changed. It is hard to believe it has been less than a year since our time at Thriving Minds. It feels like a lifetime ago in some ways, and I will always be thankful we found the time and money to go. It was truly the best thing we have ever done and the best money we have ever spent.

Selective Mutism Intensive Therapy: Days 1 and 2

When it became clear that Maggie’s selective mutism would best be treated through several days of intensive therapy I began looking for a clinic that specialized in SM. There were not many in the United States, and none at all in the southeast (there is one in Miami but that was even further away from my home than the midwest). I called three clinics and was able to speak to three different doctors about Maggie’s situation. I was very impressed with Dr. Shelley Avni in at Child and Adolescent Anxiety Practice in New York City, and with Dr. Shipon-Blum at the SMART center in Pennsylvania.

Ultimately, I decided to take Maggie to Thriving Minds Behavioral Health in Michigan for a variety of reasons. I had read excellent reviews about all three places but Michigan was more affordable from a travel standpoint, and it felt more accessible to me. I am from the midwest and could easily imagine myself renting a car and driving around Michigan. New York City felt much more complicated.

We arrived in Michigan on a Sunday night and went to A and W Rootbeer. Maggie was already feeling braver and wanted to order her own food and say Hi to the waitress at A and W.

Day 1: Evaluation and Warming Up
Day 1 was spent getting her evaluation and warming up to the therapist, and talking with me through goals and plans for the week. The person who did the evaluation was able to fade in without much trouble, I believe in large part due to the groundwork I had been laying over the previous few weeks. After her evaluation the therapist (Katelyn) was able to fade in.

Maggie was talking to her so well that they were able to do a scavenger hunt in the office that day in which she was asked a series of forced choice questions by various staff members (such as which kind of ice cream is your favorite—vanilla, chocolate, or something else?) etc. She did well with that also.

How Scary Is It?
Then we had some education time. Maggie and the therapist made a scale from 1-5 and talked about different events. Maggie had to rate from 1-5 how scary an event would be. She gave a lot of 4s and 5s (talking to mommy was a zero, it didn’t even rate a 1, but many things were very scary). The scariest thing for her was the idea of taking a class with other kids (something we tried in the past and had no success with). She said that would be 100 million hard. The therapist said 5 was the highest so Maggie started chanting the number 5 many, many times.

Before every brave encounter the therapist would ask Maggie what number she thought it would be, and after every brave encounter the therapist would ask Maggie what number it turned out to be. For the rest of the week, every activity ended up being easier than she thought it would be. Maggie expected it to be a 4 but it was a 2, or she expected it to be a 5 but it was only a 3, etc.
That evening we went out for dinner and she ordered for herself with the waitress, and spoke to the owner of the Air BnB where we were staying.

Day 2: Exposure Therapy at Target
On Day 2 we started the morning at Target, where she was doing another “scavenger hunt”, and this time instead of being asked a question Maggie was the one asking the questions. The therapist Katelyn helped her out quite a bit in the beginning, and it was interesting to watch how everything was scaffolded.

They started with a fade in type scenario where Katelyn would plot with Maggie out loud within earshot of an employee or shopper about what they were going to ask. This helped the person know what to expect (that they were about to be interrupted and also so they could understand since speech is difficult still for Maggie). Katelyn said most of the words at the beginning, such as “Excuse me, my friend has a question for you. We are trying to find the “ and Maggie would supply one word (hair bands, for example) and the therapist would chime in, “Yes, the hair bands. Can you tell us where the hair bands are?” and then we could find them and put them in the cart. We asked for a bathroom a couple times and for many items and by the end Maggie was asking the entire question by herself.

The fade in would be with the therapist saying, “Remember, now you are going to say Excuse Me, where is the bathroom?” within earshot of the employee and then Maggie would ask. Everyone was extremely helpful and she even got to pet someone’s dog and get a picture with it, which was a nice treat for her. She did a great job and it was reassuring that she could do it and everyone was welcoming and helpful. That was a great step!

Talking to Peers
The next step was to head to a play area and hope to find kids who wanted to play. We had bought the game Head Bands at Target (she had done well with that game the day before when we faded in the therapist). We went to a big indoor playground and there was a group of home school kids having lunch. Using the same fade in techniques as at Target the therapist set the stage for Maggie to ask the kids if they wanted to play with her.

Talking to peers is harder than to adults for her, so this was a step up. The kids said they would when they finished their lunch. We started playing head bands at the next table, within earshot of the new kids, and as they finished the kids trickled over to watch and eventually join our game. This went very well and the therapist was even able to transition Maggie at one point from sitting at the table while playing to standing up in front of the group when it was her turn (another level of difficulty as everyone was looking at her).

A Bridge Too Far
After Head Bands we tried to play Duck Duck Goose (competitive, unpredictable games is a big trigger for Maggie). This did not work well, and although the therapist was committed to giving Maggie some kind of success (no interaction was ever allowed to end in complete failure) it meant the therapist had to walk around with Maggie and help her touch people’s heads, and picking me as the Goose so she would not be caught even though she refused to run. She was like a puppet in a way, as she didn’t want to comply with any of it. That was really hard.

After that some of the kids had to leave and we had to get lunch. Maggie went to play on the playground in free play with a couple little girls from the group, and that was good to see since she normally doesn’t play with other kids at all. She typically just watches and complains that no one will play with her. It was encouraging. After playing she ate lunch in the car as we had to head back for the afternoon session. She got some more education from the therapist, in which the therapist explained that our minds play tricks on us and tell us something is going to be a bad experience but often it isn’t. We talked more about the 1-5 scale and how she thought things would be vs. how hard they really were. We also talked about what would happen the next day and Maggie had some free play while the therapist and I talked about revised goals since things were going well and she answered questions for me.

Fake Speech Therapy Session
Maggie also did a speech therapy session with a behavioral counselor posing as a speech therapist. One of our goals was for her to be able to start with a new speech therapist here so we scheduled two therapy sessions toward that end. Maggie has one trusted speech therapist who comes to our home, but she needs more therapy. The school system will only allow her 30 minutes per week and we want her to get additional private therapy but up until now all money on speech therapy has gone down the drain since she won’t speak to any therapist except the one she has had since she was 3 years old.

Her first “speech therapy” session was on Day 2 and started with more fade in, using a game. It went well and at one point Katelyn and I were able to leave and Maggie continued working alone with the “speech therapist”. We came back and Maggie was willing to show what she had been working on, to all three of us. This was significant as she had froze earlier in the week when her own therapist tried to get her to tell me and her sister what she had been working on and she couldn’t do it. I made a mental note to give her another opportunity to succeed at this back at home in a similar scenario with her regular speech therapist and her sister.

Pushing Herself
That night she and I went to the park to relax and do some birding. She thought it was boring until we saw a lot of baby geese. We also saw a gray Catbird and that was fun for both of us since I had never seen one before. She started showing real initiative in wanting to talk to people. She saw someone with a bike and asked him how his bike ride was. She saw one woman and 2 men with fishing poles and asked them if they had caught anything. She practically chased down a man walking 3 dogs, saying “hurry up mom, he is getting away!” so she could ask him about his dogs. The therapist had worked some on initiating on day 2 (as opposed to just responding), and it was really coming into play. It was incredible to see her zeal to talk to people now that the dam had broken. Before this she had been particularly uncomfortable about speaking to a man but now she wanted to approach them to ask her questions!

We went and got food again and she was able to order for herself again. That night we talked about what her presentation should be, as she had to share it with Katelyn on Day 3. One of our goals was for her to prepare a show and tell style presentation that she could give to her home school class. Up until this point she has always used a communication device for her weekly presentations.

She decided to do a presentation about our birding and about finding the Gray Catbird, so we practiced that at home that evening and she got comfortable with what she would say the next day to Katelyn.

I also spent time that day and evening again trying to find someone who would give her a private lesson and enable her to be part of a class. We tried ballet and gymnastics with no luck, and that afternoon I had the idea to try martial arts. I was able to find a teacher who was willing to give her a private lesson at his martial arts studio at the end of Day 3, and he also arranged for her to take a class with a homeschool co-op on Day 4. That was exactly the schedule we were hoping for so it was perfect.

Thankful for homeschoolers
I was thankful again and again during this therapy week for our homeschool “community”. We were from out of state but I posted something on a local home school facebook group about looking for opportunities where she could practice during business hours. This seems like it would be a hard thing to find, as most kids activities are in the evening during the school year,but the therapy sessions were during the day. The homeschool community came to our rescue with many suggestions, and it was homeschool families that we found at the indoor playland and a homeschool co op that opened their doors for her to join the Karate class on day 4. I was reminded again that we can travel anywhere in the nation and be welcomed with open arms by our broader home school community. What a blessing these strangers were to us!!

For more on our week at Thriving Minds, see my next post on days 3 and 4.

Preparing for Selective Mutism Intensive Therapy

I have written some posts about what we did before and during Maggie’s intensive therapy but here is a more comprehensive report about her road to overcoming Selective Mutism.

This post is part 1: Preparing for the Intensive

Laying the Foundation
A huge breakthrough came in February when I showed Maggie a segment from World of Dance, in which a girl with Selective Mutism participated in the show even though she could not speak. There was a brief segment about her. Maggie was really excited and inspired by her, and she decided she wanted to record a presentation for her class about the girl. She was excited and nervous when the day came, but it went well!

Just acknowledging to her classmates that she has selective mutism, and knowing in her own mind why she felt as she did, was very empowering for her. She had her best day in class to date that day. Soon thereafter we decided to try some fading in, which is a technique I had learned in my research on Selective Mutism. Much of my knowledge at this point had been gained from Dr. Steven Kurtz’ You Tube video called “Living the Exposure Lifestyle” and some other parent training videos that his practice had made available for free online.

Fading In
The process of “fading in” involves a familiar communication partner (me) talking to the child with SM in front of other people so that they hear the child talking. Eventually a new partner (in this case, her friend) came closer and spoke to me but did not yet engage Maggie. She spoke about what we were doing (playing trains) and asked if she could add some tracks and joined our play. After a bit, I asked Maggie another question and she responded aloud to me in the direct hearing of her friend. I had directed her friend to ask her some forced choice questions (do you want the red train or the green train?) and we waited for what felt like awhile for Maggie to answer. If Maggie didn’t answer I nodded to her friend to ask again, and we waited again for Maggie to answer. When it was clear I wasn’t going to answer for her, she answered the forced choice question. Her friend continued to ask forced choice questions and soon I “got a phone call” which took me out of the conversation for a bit. I was still close by but was suddenly not available to participate any more. Her friend continued asking forced choice questions and Maggie continued to talk to her, and eventually I moved further away and a new communication partner had been established! She was speaking to a friend for the first time!!

The fade in worked great and Maggie talked to her church friend a lot that day. Later that week we invited her best friend from our home school co op over to the house so Maggie could have one on one time with her. We did another fade in that day also, and Maggie started talking to her best friend and did not stop! They had such a great time, and it was a huge catalyst for her. Up to that point she had really never spoken to anyone outside our family. She had spoken very minimally to my sister, but never to her other aunts and uncles. She had spoken a bit to her cousins and more freely with her grandmothers but never to her grandpa or to anyone in her class, nor to any other adult.

Scripted Conversations
The next day I took her to the popsicle shop and we tried a scripted conversation where they asked her if she wanted a bottled water or popsicle. I had written some questions down on a white board. They said “Do you want a popsicle or bottled water? Do you want lemonade flavor or caramel?” We practiced the questions at home before we went to the popsicle shop, and practiced again outside and once more inside the shop within earshot of the worker.

She was nervous when it finally came time for the server to read the questions off the white board, and it took a few times of them repeating the questions, but eventually she was able to answer them. I chose this particular shop because it is quiet–not busy like Starbucks–and we were the only customers at that time so there was time to practice.

Later we went to her brother’s soccer game and she was able to do another scripted conversation with forced choice questions at the snack stand. I started writing forced choice questions on index cards and handing them out at church so she could practice speaking with people there. I even asked her at one point what she thought would be good questions. We wrote things like “Did you go to your grandma’s yesterday or to your cousins? Did you eat an orange for breakfast today or a banana?”

She was still using her device for presentations at class but I wrote forced choice questions out for the question and answer time afterward. We practiced the answers and handed out the cards so she could start answering them verbally. She did a few more practices while running errands and we went to the nursing home and she spoke to her grandpa for the first time, to her aunt, and more to her cousins than she had previously.

These were all a great warm up to her week at Thriving Minds in Michigan, where she would get several days of intensive therapy for Selective Mutism. In some ways I almost felt we didn’t need to go because she was making progress but in other ways I could still see how anxious she was and that there were many goals she could not attain. Her warm up at home enabled us to push her harder and further once we got to Thriving Minds.

Selective Mutism intensive: Day 2

We flew to Michigan this week so 6 year old Maggie could do an intensive at Thriving Minds. It is going really well!

I started doing brave talking exposures with her at home about 6 or 8 weeks ago to prepare for this week and she had already come a long way, but her therapist here is finding ways to up the ante every day and she is growing in confidence as she meets each challenge.

Today was our 2nd day and at the end of a day full of brave tasks we went to a local park to bird watch and decompress (so I thought). But she saw many people there that she wanted to speak to! At one point she was practically chasing someone to catch up to them so she could ask to look at his dogs, and she was worried she would not get to talk to him and was hurrying me along!

We also played on the playground and had a fun time but she said her favorite part was talking to the people. She asked some fishermen if they caught anything and asked a man if he enjoyed his bike ride, and asked to look at 2 different people’s dogs and whether she could pet them. Two months ago she had never spoken to anyone outside our family!

She has never been able to participate in any extra-curricular activities because of her fear so we lined up a private karate lesson for her for tomorrow and she will attend a class with other kids the next day. When we talked about that just this morning she said it was a “6” on the “1 to 5 scary scale” (off the chart scary) but tonight she said she can’t wait for her karate lesson, and she is so excited! I know it will still be scary for her but she is learning that she can do scary things and she is getting the joy that comes on the other side, which is motivating her to push herself further.

I am so glad we made the effort and spent the money to come! And I have been so thankful that Thriving Minds allowed us to have so much input on specific goals for her. She is doing things that are unique to her situation and which will really help her back home, such as replicating “speech therapy” so she will be brave enough to speak to a new therapist and playing group games like Duck Duck Goose at the playground, since she is very fearful of unpredictable situations with peers. Taking a class is one of our goals as she would love to take gymnastics or ballet class but she has been too afraid.

All of this was scaffolded with other smaller tasks along the way and every time she is surprised to find that nothing has been as scary as the thought it would be at the beginning.

Living the Exposure Lifestyle: Update

We have been “living the exposure lifestyle” for the past two weeks, and today was our first day back at our home school co-op class. Six year old Maggie blew our socks off by repeating memory work in class, doing hand motions for songs, speaking aloud to classmates, answering the teacher, and answering forced choice questions which I had written on note cards (and we practiced at home) for her show and tell. She has always used a communication device to give her show and tell but this time I wrote down questions about the presentation and offered her two answers. She gave the presentation by telling the answer she chose.

These are all things she had never done before, as she has never spoken at class before. It was an amazing day! Until the end…I stepped out to answer an important phone call from a doctor while the class was silently coloring. Everything was going just fine and class was almost over.

But when I came back a few minutes later it had all fallen apart. The teacher asked her some forced choice questions about something she was drawing and she froze. She couldn’t answer and was so nervous and ashamed. In hindsight, I think the teacher tried to say something like “Is that a dog or a cat?” and the answer was “something else”, but I had not told the teacher to make sure to include that as an option. Since neither answer was correct she didn’t know what to say, and she just froze. When I came back in the room and she saw me, she burst into tears and it took a long time to get her to stop crying. I felt terrible and so did her teacher.

I have told her many times today how proud I was of her and how amazing she was today but she kept saying “I didn’t do good. I cried.” And she was worried her friends wouldn’t like her any more because she cried.

I felt like a huge failure for thinking I could step out for a few minutes. BUT I am still claiming this day as a victory, and I believe we can continue to build on it and have another great day at co op next week. I told her tonight that she had her best day ever and that I was the one who made a mistake. I shouldn’t have left her.

I think the emotion and anxiety of her big day was just all too much and when I stepped out she crumbled. But tonight she has been able to say, “I had my best day ever but you had your worst day ever, mom.” I’ll take it!