First Person: Helping Sofia Speak Up

When 3-year-old Sofia started preschool, her parents, John and Kandi, found out that she wasn’t talking in class — not at all. When it happened again the next year, said John, “we started realizing that Sofia was quote unquote a different kid in the school environment.” Kandi and John talk about Sofia’s treatment for selective mutism and her participation in a week-long intensive program called Brave Buddies.

Kandi:  Prior to starting preschool, before age 3, Sofia was always very shy when someone tried to talk to her. It was with family, as well as friends, as well as strangers; it was with pretty much everybody. There was a small group of people who she was more comfortable with, one or two family members she would open up to and finally start talking to them. So then, she turned 3 and started preschool in September, and didn’t talk at all in class. Not at all.  If they asked her a question, she didn’t nod, she wouldn’t do anything. We continued to think that she was just extremely shy.

Kandi: In the early spring, they said, “We think you should have Sofia evaluated by the Child Study Team at the school.” We brought her into the school, and the speech therapist got her to talk. She sat on the floor with her and got her to interact with her, playing with the trains. Not a big conversation, but they did get answers from her. So they told us that she did not qualify for special services at that time.

We finished that school year, and we just had high hopes that when she was four and she started her new class, things would be different. So September came and she started school. The new teacher got her to respond just once, with one or two words. And then it stopped.

 “When we took her to school, as soon as we walked through the doorway, she would stop talking. I would ask her a question, and she wouldn’t even respond to me.”

John:  At that point we started realizing that Sofia was quote unquote a different kid in the school environment. But even at home, whenever family or friends came to visit, she was different. Even the way she interacted with us, she just shut down when others were present. So that was a turning point for us.

Kandi: When we took her to school as soon as we walked through the doorway, she would stop talking. We could just step into the school building, and I would ask her a question, and she wouldn’t even respond to me.

John:  She was overwhelmed with anxiety. Poor kid. It worsened so much that she appeared not just nervous but actually scared.

Kandi: And even birthday parties and play dates: She wouldn’t interact with the other kids. She would go in the corner to play or she would sit by me. She would never leave my side.

John:  That was rough.

Kandi: So right after the holidays, January or February, her teacher called a conference with me, and she said, “Have you ever heard of selective mutism?” And I said, “Yes, I’ve heard of it.” But they had evaluated her when she was 3, and I thought, “Oh, no, she doesn’t have it; she’s fine.” I guess we were in denial partly and hoping she would grow out of it.

And she said, “I think you really need to have the Child Study Team reevaluate Sofia, and have them come to the preschool to observe her.” So that’s what I did. I called them up, they came out to the preschool, and they observed her there, and then they finally recognized that there was something going on.

Kandi: Yes, but the day before she was supposed to start the special ed program, we found Dr. Steven Kurtz. John spoke to him on the phone.

John:  He said, “I want you to hold off starting her. I’d like to come out to the school first.” He wanted to make sure that we started the relationship the right way with Sofia and her new teachers.

Kandi: We all met the Child Study Team, and talked about how to phase in her new teacher. We went there every day and little by little we phased the teacher in and got to the point where Sofia would interact with the teacher one-on-one. And Sofia was responding to the teacher. She was very nervous, but she was responding softly. And we were using the term “brave talking,” giving her praise when she spoke. So once that all started and she was getting rewards for her brave talking, she was responding.

John:  She made progress. She wasn’t anywhere near where she would be if she didn’t have selective mutism, but she definitely made significant progress.

Kandi: They made a reward chart for her where she’d get her five stickers and then she would get a reward. She got to pick the reward. It was something simple like she would get to play in the play-kitchen in the classroom. That really made a difference for her.

“Even though she wasn’t speaking at normal volume, and so on,  we could see her anxiety decreasing significantly. She was slowly desensitized to the things that were major triggers of her anxiety, which was huge.”

Kandi: Yes. Dr. Kurtz was there for that IEP meeting, he thought everything sounded good for her. So we signed her up for Brave Buddies that summer. And with her kindergarten teacher, we did the phasing-in process again, very carefully.

Kandi: I remember when we first went in to work with her Brave Buddies counselor, Melissa, we were playing Go Fish, and it was just very intense for me. I thought, oh gosh, she’s not going to talk. I was very nervous. But Melissa was really relaxed; she had done this before. Sofia did great. And then at Brave Buddies, she whispered. Sofie used to talk like a ventriloquist, without moving her mouth. She did that a lot.

John:  Oh yeah. But it was great progress.

Kandi: And then I think she talked in a whisper the whole week at Brave Buddies—I don’t know that she ever spoke at a normal tone. But she did great. I mean, she went to Dunkin Donuts and ordered her doughnut, and she asked where something was in the bookstore. She earned her reward every single day.

John  And, you know, even though she wasn’t speaking at normal volume and so on, comfortably, we could see her anxiety decreasing significantly. She was slowly desensitized to the things that were major triggers of her anxiety, which was huge. I think that really set the stage for the big progress she made subsequent to Brave Buddies.

Kandi: By this time we were consistently praising Sofia when she spoke, saying “great brave talking,” and we were doing it in public, and we went to stores and restaurants.

“By the New Year, she was getting in front of the class and doing show-and-tell! Absolutely incredible! We started getting a lot of comments: family, friends, neighbors, teachers were saying, “Wow! She’s a totally different child.”

John:  Yes. That reinforcement by the family members made a huge difference. When you don’t know about selective mutism, there are things that you do that you would think, “It’s no big deal,” yet it really is. It can really have a huge negative impact on the kid.

Kandi: Like for example we hired a babysitter, and normally someone would come in the house and be like “Oh hi, what’s your name?” right in her face. And then, “Oh, why won’t you talk to me?” As soon as they make an issue that she’s not responding to them, forget it. So we would tell the babysitter: Say hello to her, but if you don’t get an answer just go about your business. Start playing with her, interacting that way. Sit down, play something with her. Melissa had said, “Be a sportscaster,” and that’s a big thing. Like, “Oh, Sofia, I see you’re playing with that doll, that’s nice.” Talk about what she’s doing.

John:  All these little techniques add up.

Kandi: And eventually she would be at ease, she would be comfortable. And then eventually she would talk. As long as there wasn’t that extra pressure placed on her. That sportscaster tip was really helpful.

John:  Yeah, and another excellent technique was making sure to give Sofia plenty of time to respond. And when I first heard that, I thought “ehh,” but then I tried it, and was amazed how it makes a difference. It’s important to wait and give the kid a chance to respond. So all these little techniques, using them together, makes a big difference. It has a significant positive impact. The cumulative effect of it being done correctly, by the school and then at home, by the parents and by the other family members, and even extending it, as Kandi mentioned, to the babysitters, I think that was really the clincher.

John:  She’s made huge progress. By the New Year, she was getting in front of the class and doing show-and-tell! Absolutely incredible! We started getting a lot of comments from people: family, friends, neighbors, teachers were saying, “Wow! She’s doing great. She’s a totally different child.” We’d go to a birthday party and off she’d go with the other kids playing, as opposed to being wrapped around Kandi’s leg, totally scared, nervous, worried and silent. Night and day.

Kandi: At her IEP meeting at the end of the year they said she was ready to be fully mainstreamed, no more special ed.

John:  Now she’s talking and interacting with other students, she speaks to the teachers, she’s doing great. And as a matter of fact, not too long ago, we commented to her that we are so proud of her and all the brave talking she has been doing…

Kandi: Yeah, I almost cried. Sofia said, “I don’t brave talk anymore, Mommy. I just talk.”