First Person: Finding Josh’s Voice

First Josh stopped speaking in pre-school, and then he stopped speaking to his family. Concerned and confused, his mother Dylana sought help and found the Child Mind Institute’s Brave Buddies program. Over the course of the intensive program, Josh found his voice and is today making progress that seemed impossible just one year ago.

Dylana: I first noticed that he had issues with talking when I enrolled him into preschool. On Joshua’s first day of school when I went to pick him up the principal pulled me to the side and told me that he didn’t speak to anyone. I was really shocked because Joshua has always been known to be very verbal at home, so we thought maybe he was just a little anxious. We decided to give it a few more days and he would say I don’t like school and I don’t want to go. We gave it about two more months and throughout that time, nothing. Not a word to anyone. Although he would play with the kids and show expressions, he would not speak with them. And then we knew there was a serious problem when he came home from school and he woke up from a nap and he stopped speaking at home. So then he would periodically stop talking at home and then at that point we figured that there’s something serious going on and we pulled him out of school.

Dylana: I was devastated. All things started to run through my head. Is this autism? Is there something really wrong with my son? How was this going to affect his academic career and his social career? How is he going to learn and build relationships?

“The principal pulled me to the side and said Josh didn’t speak to anyone. I was really shocked because Joshua has always been known to be very verbal at home.”

Dylana: I think a lot of educators have heard the term selective mutism but they don’t really know what that means and how to deal with children with selective mutism. So even though the principal was familiar with it, I don’t think she knew how to deal with him. In speaking with her, she was questioning if maybe he was just being a little manipulative because he did not want to be in school. Not really understanding that it was something much deeper going on with him.

DYLANA: In the beginning when he wasn’t speaking at school, he would come home and he would speak with us fluently. About two months into this, we noticed he would wake up from a nap and he would just start pointing for things. And when I would try to ask him direct questions. I was almost trying to demand him to speak to you but with selective mutism, it actually makes things worse. It heightens the anxiety. Because then with his grandparents and everyone who usually speaks to him were really wondering what’s going on with him and why isn’t he speaking. So when he stopped speaking to me and my husband and his brother, that’s when we really started to seek help and we found the Child Mind Institute.

“It was heartbreaking for me to see him like that and not know what to do to help him.”

Dylana: When he wouldn’t speak at school he seemed himself. When he stopped speaking at home you could see his frustration. And almost like a depression. He would cry and he would be sad. I even looked into child play therapy for him and when he would go he would draw with darker colors. This was affecting him emotionally as well. It was heartbreaking for me to see him like that and not know what to do to help him.

Dylana: They are very supportive. My mother, my in-laws they were very supportive. They just didn’t know what was going on. There was a lot of explaining. Once I became educated by the specialist at the Child Mind Institute, I had to then educate my family so that they would not aggravate the situation unnecessarily. And then for people who didn’t understand then I had to keep him away from them.

Dylana: Absolutely. When he stopped speaking at home because I felt like I am probably the closet person to him. I was a very safe place for him. When he stopped speaking to me I knew something was wrong. That is when I decided to pull him out of school. He was not in school for several months because at that point we were working with the Child Mind Institute getting him assessed. At that point he did get a diagnosis for selective mutism. And then I had to find the right school environment for him. I researched so many different schools. I had to actually go and see if it was a good fit. Because I knew that the school he was in was a great school but it was not a good fit for Joshua. Several months later I found a school that was really a safe haven for him and a good environment for him to thrive.

Dylana: Initially, it was a lot of meetings with the specialist to be educated on what selective mutism is and what it’s not. The skills and the techniques that that will help him to feel comfortable to verbalize and to communicate. To me that was priceless because then I was able to use those skills with his teachers and with people who I knew he would spend time with. I needed to be empowered so that I can really help him wherever he went.

“What’s wrong with my son? Will he get better?”

Dylana: I learned that if Josh is in a new environment, one thing  someone should not do is to question him within the first 10 to 30 minutes, depending on his comfort level. Instead of questioning him you would just reflect on things he is doing. You can compliment him or you can tell him how nice he is looking. You can talk to him about what he is doing or his interests and maybe tell him that you are interested in some of the same things without asking him direct questions.

Dylana: It is empowering because it works. When he first went to school, it was hard because he would kick and scream because he didn’t want to go, he wanted to stay with me. I would just pull away and leave. He would have a bad day. We figured out a strategy. Me, Josh and his teacher would meet on the rug in the lobby for five minutes and he would bring a toy. I would talk to him in advance that we would talk to Ms. Richards about Scooby Doo and he would be okay with that. We would play and I would talk with him and then I would include her into the conversation and that would allow that warm-up, that comfort and then he would eventually speak with Ms. Richards right there on the rug. When I said good-bye he was already communicating with her so then she became that safe person when I had to leave.

“When he stopped speaking to me and my husband and his brother, that’s when we really started to seek out some help.”

Dylana: Giddy, happy. It was great. I saws that the skills were working. It is definitely something that works. When I saw Josh talking, I felt hopeful, extremely hopeful. I felt that things are going to continue to get better and better. People are going to see that this little boy has a big voice, a very big voice.

Dylana: I want him to be confident. I want him to be secure. I want him to know that he has a great voice and he has great ideas and thoughts and that they should be shared. He should not feel fearful to speak and to voice how he feels. If I could record him you might be shocked to see how verbal he really is.

Dylana: I would tell myself that no matter how bad things get there is always the light at the end of the tunnel and there is always a solution to every problem. And always keep the faith because out of something bad always comes something great.

“I want him to know that he has a great voice and he has great ideas and thoughts — and that they should be shared.”

Dylana: There definitely is a stigma around mental health. It is definitely more acceptable if something is physically wrong with you opposed to mentally wrong with you. However I think because I don’t hold a negative stigma toward it when I communicate what’s going on with Josh to people. I don’t feel that either. I take it for what it is. Maybe also because I am in graduate school and I’m working with special education.

Dylana: It was a total relief when I got there. The specialist I worked with is amazing. One of the first things that she said was “when” Josh starts speaking. And one of the first things she said was when he starts speaking and I said okay. And it took about one or two sessions that she met with Josh and he spoke with her. Based on who he was and her assessment of him, she was very confident that Josh would start communicating and he did really quickly. Taking him to Child Mind Institute was a safe place for him. It’s a place where he can have fun, where he can verbalize and can communicate and he walks out and seems more confident and more at ease. I’ve had a great experience at the Child Mind Institute and they’ve really helped to change our lives.

“Always keep the faith because out of something bad always comes something really great.”

Dylana: When they have the Brave Buddies program, you can do a one or five day. They have a parent session, which is like a training. All the parents get together and talk about some of their experiences. It could be a negative experience in school. Some kids only speak to one teacher. Some kids only speak to other kids. Some kids only speak to teachers. Exchanging stories is really helpful because you learn little tricks and ways to bribe the kids. Bribing is not always a bad thing. Certain things like giving them brave bucks which is a reward system so that when they do communicate they get rewarded with brave bucks and when they get enough brave bucks they can go get ice cream or get a treat. In addition to that, you learn how to communicate with your child. They call it warming them up. You reflect on how they are doing before you start asking them open-ended questions or choice questions.