Selective Mutism -Parts 1 & 2
My son was born in 2002. He was our second (and last) child. My daughter was seven when he was born and we were all incredibly excited to welcome him into the world.
During my pregnancy, I had read everything Dr. Sears and attended La Leche League and Attachment Parenting International meetings because I had had my first child when I was much younger (19) and didn’t have support for what I only knew as following my instincts. I didn’t know that the way I wanted to parent was “called” anything or that there even WAS support for it until a friend of mine bought me a subscription to Mothering Magazine as a gift when I was pregnant. It JUST occurred to me that I never thanked her for that. I’ll do that after I finish this post. Anyway, I attended those meetings and did all of that reading because I felt supported in the way I wanted to do it “this time around”.
I won’t go into details about my birth experience in this post (will save it for another day), but I had a doula and wanted to do it “naturally”. Things didn’t quite turn out the way I’d planned, but all in all, he was born healthy and was at the breast before the cord was even cut. I actually even had milk, which was shocking to me.
I spent the next several months in a blur of nursing, co-sleeping, slinging and changing diapers. Almost from birth, I noticed that my son didn’t like to be held by anyone but my husband and myself. Ever. My first child (my daughter) was so different. She practically came out running toward strangers in a way that made us scared for her safety because she’d talk to anyone, sit on anyone’s lap, etc.
We went to a weekly LLL playgroup, which was really what I think kept me from sinking completely into what I was diagnosed with at ONE YEAR postpartum, which was Postpartum Depression. Sometimes that weekly playgroup was the ONLY time I left the house willingly except to take my daughter to school and pick her up. There were warning signs, of course. At my six week postpartum visit, I told the OBGYN that my mother and husband were concerned about me having PPD and that I cried all of the time. She finished her exam and didn’t say a word. I was a little surprised, but figured she must not be alarmed and what I was feeling was normal. Again, I could go into details, but I’ll save that for another post, too.
My son seemed very timid around our playgroup friends, even from an early age. He did have a period when he was between 15 and 20 months or so where he would climb on equipment, play with the other children, speak in front of other people, etc, but that passed quickly. When he was almost exactly two, we moved from San Diego, CA to North Carolina. I didn’t waste any time in finding things for us to do, mostly so that I could make new friends and I enrolled us in Kindermusik. From the get-go, he didn’t want anything to do with the instructor, who is now one of my very good friends or any of the people around us. He refused to participate willingly, but was happy to have me carry him around rather than dance. He wouldn’t hold anyone’s hand. We also enrolled him in a gym class that was basically tumbling and fun. Same story there. He wouldn’t participate and definitely didn’t want the instructors speaking with him. I had to be right by his side and I had to basically DO it all for/with him. At the time, I just figured he was a little shy and I was a little embarrassed because adults didn’t understand and seemed exasperated.
At this time, we were also still breastfeeding and he was still sleeping in our bed. Family and some friends insisted that this wasn’t “normal” and as it became increasingly obvious that my son didn’t want to socialize, I definitely felt like I was in the hotseat and seen as the culprit with my crazy attachment parenting antics that had caused him to retreat and only want to interact with us. At home, he was totally different. He even made friends with a boy that was a year older than he when he was three and they played beautifully at our house, their house and at the park. It just didn’t make sense.
When he was four, we decided to enroll him in a few hours of preschool a day at the local Montessori preschool because I really felt like maybe he did just need more social interaction. He hated it. He cried many days before school, but we felt like we had to keep sending him because one day, he’d turn a corner. Again, he made a select few friends, but wouldn’t address any of the teachers, even his own most of the time, and his body language was shoulders down, head down, eyes to the floor when spoken to or put on the spot. About halfway through the school year, his teacher sat down with me and told me that she’d never seen anything like it and that she was at a loss as to what she could do. This school went to age 6 and since kindergarten isn’t mandatory here, I suggested that maybe he needed to stay there for the next year instead of moving on to “regular” kindergarten. She informed me that they really didn’t have anything academically that they could do with him because his reading, comprehension, basically ALL skills were well above those of his peers and more like a second grader. His only weakness was fine motor skills and at that time, he couldn’t write letters or draw things that looked like anything. She recommended that he move on. She also recommended OT for the writing, which we decided to hold off on because I felt like it would come with maturity. It did seem to get easier and he seemed to hate it a little bit less than he did before. The hard part was that he seemed to be even more withdrawn with others when I was around, so I wasn’t around much in preschool.
We put him in the lottery for the local charter school because I felt like if I was going to send him to kindergarten, I wanted to do it where there were small class sizes and parent participation was encouraged. My daughter was already going to this charter school as a middle-schooler, so I was familiar with their philosophies and methods. He got in and we were so happy!
Over the summer, his kindergarten teacher scheduled a home visit, as they do for all kindergarten students and he refused to speak to her. When he left the room, I informed her of his “shyness” and all of that. She was very understanding and I instantly liked her way and her presence. I felt like he couldn’t have had a better teacher for the journey we were about to embark on. I was right.
I was very nervous on the first day of school, although I worked to try not to show it. He didn’t want to go, and we talked to him until he felt comfortable going. It helped that he had already met his teacher and that he’d already spent some time in the school over the summer since I was the PTA President.
The first day went well and although he didn’t talk to or look at anyone, he didn’t cry. On the second day of school, he cried. The teacher motioned for me to leave the room and I was a wreck. I looked back after I walked out of the room and she was sitting cross-legged and cradling him in her arms while she rocked back and forth. I was in tears, too. My friends stood there with me and consoled me. I reluctantly left him there.
His teacher and I agreed that it was best if, at least for the first six months, I didn’t spend time in the classroom as he seemed to regress a bit and clam up more when I was there. Gah! Maybe it WAS my fault!
Part 2
My son is 6 years old and he has Selective Mutism. This is the second part of my blog post about Selective Mutism and our journey to where we are now.
Around the time that he was finishing up preschool, I saw a report on Selective Mutism on ABC. Now I can’t remember if it was online or what, but it must have been. Anyway, it was like a “ZAP” feeling through my body. I felt this twinge of familiarity with the subject of the story and honestly? I still couldn’t pinpoint the fact that my son had Selective Mutism. I guess it was because he was so young.
My husband took him to a classmate’s birthday party. He missed the cake because he sat in the car with my husband trying to talk him out of the car for about 30 minutes. He even brought up the cake incident the other day, more than a year later.
We took him to a birthday party at a Chuck E Cheese type of place for a classmate and he refused to play games with his friends that he played with every day.
He seemed to do much better when I was not in the classroom or part of the social situation because he didn’t have me to talk “through”. A lot of the time when was answering someone or had something to say, he’d whisper and that was my cue to lean down, hear what he was saying and relay the message. There was no way to get him to say it himself, although even the whispering messages through me was an improvement because the previous year (preschool), he wouldn’t even do that.
The way it works at his school is that they start kindergarten with one teacher and they “loop” or stay with that teacher through first grade, too, then the teacher loops back down to teaching kindergarten. For us, this was a great thing because after having interacted with all of the kindergarten teachers, I don’t think that any of the others would have been as patient or caring or affectionate with my son.
Again, in 2008, I saw a report on Selective Mutism on ABC. This time the realization that this was probably what my son had or it was at least a very good possibility started to sink in.
At the end of the year ceremony and performances for kindergarten, they were supposed to sing Kool & the Gang’s “Celebrate” for the audience. He knew the words and would dance around the house singing them. When he got up there with his class, it was back to the usual posture of head down, shoulders down, no words coming out. It was really hard to watch because I didn’t understand it. I knew by then that that was “just the way he was”, but what WAS it? WHAT? My daughter (7 years older than my son) embraced public performances. In fact, we had to motion for her to stop being silly during them because she was always stealing the show with her animated facial expressions and dancing. It was cute. But so different from what we were dealing with with my son and I just wasn’t prepared.
During the summer, my daughter’s art teacher offered art classes for specific age groups. She said that if my daughter helped with the younger kids’ class, she’d get her tuition free. I went ahead and enrolled my son in that younger class. I thought it would make it easier if his sister was around and I wanted him to be able to have that experience. On Day 2, I had to pick him up about an hour into it because he was crying to go home and wouldn’t go back into the art room. I was just getting into the shower when I got the call. I felt so guilty that I went ahead and took the shower (very quickly) and went to pick him up. I felt embarrased that he couldn’t deal. I don’t know why. I knew that it wasn’t his fault. I knew that it wasn’t my fault, but my goodness it was tiring and embarrassing.
We missed the rest of the week because he didn’t want to go back. One thing I’ve learned about Selective Mutism is that there’s NO WAY to MAKE them do anything. I have a friend who I love a lot, but I know that she wonders why I don’t just “make him” do things. Isn’t it that easy? No way. If I could have, I would have.
We have several awesome parks near our home and we like to go there as a family or when we need a change of scenery. Things would be going fine until another child showed up and then I either had to play on the playground with him or we had to leave that area and find one where there wasn’t a child playing. Playgroups were out of the question although he had two friends that he could have playdates with at our house or theirs. He could even be there without me, but as well as we know them, he wouldn’t speak directly to any of the parents. They just got used to it and would talk through their kids to my son. It’s kind of funny if you think about it. Everyone just knew that was the way he was.
When school started back for first grade in fall of 2o08, we were back with his same group of friends and the same teacher. He seemed a little bit more confident, but hadn’t made much progress and didn’t really behave much differently. He still had the sullen-looking body language when someone other than his teacher or his friends would talk to him. About two months into the school year, I was asked to join the teacher and the “Exceptional Child” team to talk about my son’s fine motor skills. He still couldn’t write or draw well and when he colored, he had a hard time with control and staying in the lines or anywhere NEAR in the lines. We’ve never encouraged doing *anything* “in the lines”, but you know how that is. I am not the one evaluating my child in school. So I went to this meeting and we discussed simple “occupational therapy” techniques that we could try before referring him to a specialist. They got him a huge, chunky pencil grip bigger than any I’ve ever seen. They also suggested playing with Play-Doh and building with small Legos to help with it as well. They started to have him write all numbers 1-100 once a week. His progress was very fast. It was amazing how those small modifications improved the strength of his hands and the legibility of his writing. It was quite remarkable. By the winter break, he was “up to par” and kept improving. We were quite proud and so was he. He started to draw and color “just for fun”, which he had never done before. I suspect it was probably very tiring and discouraging before when it was so difficult.
I had been doing some research online about Selective Mutism and even joined a Yahoo Group full of parents whose children have or are suspected to have Selective Mutism. I had a difficult time finding a “specialist” in the area and the idea of going up to PA to work with the pioneer in the study seemed unrealistic. As I did my research, I noticed that over and over it was described as a social anxiety, childhood anxiety disorder…it all boiled down to anxiety when you read all of these studies and articles. I have suffered in my life with various forms of anxiety, so I could relate to that. It seemed less like some crazy, unknown disorder for which there was no treatment and more like something that he could possibly overcome if I could find someone who knew what they were dealing with.
Looking back now, I think part of the reason I was in denial about SM and the fact that my son probably had it was because through most of the studies and articles I read, medication seemed to be one of the main methods of treatment alongside therapy. I wasn’t sure if I wanted to go down that road with my six year old. My six year old who still has dimples in his knuckles and all of his baby teeth.
Our pediatrician has several children with special needs of her own, so I figured she might be a good place to start to see if I could track down a therapist in our area. I emailed her my concerns and suspicions and within days, she gave me the name of a practice right here in town where both the psychiatrist and therapist has at least SOME understanding of Selective Mutism, or at least childhood/social anxiety.
I wasn’t totally crazy about the psychiatrist. No pun intended. He was sort of loud and “in your face” and was all “hey buddy” and “what’s up dude” with my son. It reminded me of the girl at JCPenney who tried to take his portrait when he was 6 weeks old. She was trying to make him smile with her loud “ah GOO GOO” and waving the feather in his face to get him to smile. She was probably 17 years old. I told her that if she could get a photo my attached-at-the-boob six week old son NOT WAILING I was happy…forget smiling! Anyway, it reminded me of that.
Within an hour, we had a prescription for an SSRI (the most common medication successfully used with those with SM). I was reluctant because I didn’t think that he could possibly tell if my child, who barely spoke, would benefit from medication in less than an hour. I consulted our pediatrician about the dose, waited a few days and after crying and talking to DH about how final this felt, this actual diagnosis. Then we gave him 1/4 of the dose that the psychiatrist prescribed. The pediatrician said that it was okay to start out low if we were worried about possible side effects. We did that. Within three weeks, we “upped” it to 1/2 of the recommended dose.
A couple of weeks after he started his medication, we went to the therapist at the practice. We both liked him right off the bat. He was warm and kind and has a son a couple of years younger than mine. He asked me to leave the room so that they could play a board game. I’ve never left my son in the room with a “stranger”, so I sort of slowly backed out like when you’re trying to get out of the room with a FINALLY sleeping baby. I expected him to run after me, but he didn’t. I sat in the waiting room until they came out. My son talked about playing “Sorry” with Dr. Andrew all the way home. He was also excited to tell daddy about it when he got home.
We started to notice positive changes in him a couple of weeks after we started the 1/2 dose, so probably about six weeks into his drug and talk therapy. He calls “Dr. Andrew” the “talking doctor” because I had to call him that to get him to the first appointment so that he knew he was going to see someone LIKE a doctor that wouldn’t do anything but talk with him.
He started to talk even more at home, which we didn’t think was possible. He began to sleep better and we noticed that he wasn’t quite as afraid of things like slides and stairs (the heights fear) and I have a funny, true story for you.
There was a family picnic before spring break for Earth Day and his teacher was sitting at a picnic table talking to one of my best friends (and the mother of one of HIS best friends) and my husband. His teacher was talking about how her daughter is engaged and will be getting married. My son interrupted and said “um, you know what I think is funny? When a boy marries a boy”. Imagine their faces. 1) what do you say to that? 2) he has never spoken up in a group like that, particularly a group of adults. DH told me this story and I laughed and laughed. Then I was SO PROUD that he said that. Of course, we are convinced that we’re like the Keaton family raising Alex P. Keaton. We’re tree-hugging Obama campaigners and he insisted that we vote for McCain in the last elections. To this day, he’s sad that he didn’t “win”. I’m hoping that he means that it’s “YAY” funny when boys marry boys. I don’t know. Whatever, right?
He’s actually up to the full dose at this point. He looks forward to visits with Dr. Andrew and when I say we have to go there, he cheers!
I will list for you now (and try not to cry) the things that he’s done in the past few months that we NEVER thought would happen. I know these will sound very “normal” to most of you, but these are BIG FREAKING DEALS in our world. Earth-shattering.
- He let the dentist get X-Rays
- He didn’t run away when a group of about 50 summer camp kids charged the playground where he was playing and he even played WITH them
- He told the lady doing face paint at the neighborhood festival what he wanted her to paint
- He tried to swim on his own with the “pool noodle”
- He got into the ocean up to his waist
- He said that he’s not scared of flying in an airplane anymore
- He sang at the end-of-the-year ceremony this year. I cried and cried
- He went to a SLEEPOVER and although we “waited up” until 3am, he didn’t have to come home
There are probably more, but those are so incredibly major and it just keeps coming. It makes me so happy that he is not so fraught with anxiety that he physically cannot perform everyday “normal” activities or be in social situations. We’re so proud and I’m so incredibly glad that I found a group of parents who knew what we were going through, a fabulous and patient therapist, a beautiful teacher who lovingly guided him through kindergarten and first grade, accepting of his limitations and needs, and for having the courage to work past my fear of medication and therapy for my child to help him get to the other side. This story isn’t over.
