Selective Mutism and the Search for a Special Tool

In the Trenches is pleased to welcome Amy Anderson as a guest poster. Amy is the co-founder and co-editor of the fabulous Mamazine.com. She's been teaching writing to native and non-native speakers of English at a local university since 1995. She's stepmom to Vincent and mama to Henry and Josephine, and she lives in Sacramento with her husband and kids. This post first appeared at Mamzine.com in September of 2005.

This week has been a tough one. Henry started first grade, and while he has a warm, experienced teacher (the kind you just want to be hugged by yourself at the end of a long day), new routines are always a little harder for Henry than they are for our other two kids. The baby who didn't figure out the whole breastfeeding thing until he was three weeks old, and even then didn't seem convinced life outside the womb was all that cool, is still in the "slow to warm up" category, which means changes are greeted by irritability and tantrums.

In the past few years, we've started to figure out some of the reasons behind our early conviction (like two minutes after he was born) that Henry is a bit more emotionally intense than many kids. After two years of preschool, when he still wasn't talking to his teachers or to many kids, we realized that the funny, strong-willed, talkative little boy we knew seemed like a delusion to many who knew him. When I'd tell stories of funny or frustrating moments with Henry, even close friends would stare at me, puzzled, and say, "I just can't imagine Henry saying that." After a while, I realized they were right—how could they, when he never spoke around them?

I asked our pediatrician about Henry's silence around others. "Oh, he's probably just shy," was the answer she gave—and the one I wanted to hear. Made sense to me, a shy kid who, as a fifth-grader at my second new school in two years, spent every lunch period in the library reading. So I told myself to calm down, to let Henry be Henry, and to stop looking for problems all the time. After all, I'd noticed that white, middle-class, educated moms like me are often judged for being too quick to label and even to medicate their kids if they're just the slightest bit different from others. Surely a wait-and-see approach was the best response.

After a conference with his preschool teachers at which they told us they'd never, in their many years of teaching, seen a child like Henry, however, I realized I was going to have to get some answers. Like a true bibliophile, I went on Amazon.com and typed in "shy children" and scanned the results, noting that several titles with the term "selective mutism" had appeared. I Googled "selective mutism" and found out it's one of the ways anxious kids show their true fears—by shutting down and not talking. All the descriptions of kids with selective mutism fit Henry: a frozen appearance and silence in many situations, normal language development, a distinct difference between his relaxed, talkative behavior with some family and close friends and his silent, almost catatonic behavior with most others. I read for hours, and then I turned off my computer and tried to forget what I'd read.

Reading the term "selective mutism" scared the hell out of me. Sure, relatively speaking, an anxiety-based disorder isn't the worst thing that can happen to a person. All the families whose kids have physical disabilities, or autism-spectrum disorders, or serious illnesses are facing far more difficult daily struggles than we are. But having a label attached to my kid terrified me. So did the fact that I'd been the one to find it. Wasn't someone more expert than me supposed to be pointing these things out? Oh, god, I realized. I'm supposed to be the expert here, the all-knowing and wise Mother. Fuck.

Fortunately, Henry's pediatrician came across an article about selective mutism in a medical journal and sent us a copy, with a note saying this seemed to explain Henry's behavior. Armed with a medical expert's opinion, I moved into action, doing hours of research, buying books, downloading current research, and putting together information for his teachers. In short, I tried to be in control.

No one, however, had told Henry that I was now in control. Or, to be more exact, no one had told that part of him that greets the world with anxiety that All-Powerful Mother was on the job and the anxiety needed to leave. In fact, my own tension about Henry's inability to talk at school and in most public settings only exacerbated his anxious behavior. "Do you want to wave goodbye to your teacher?" I'd ask in that straining-to-be-nonchalant voice he saw right through. In trying to help, I became almost the worst person for him to be around. The two of us together were one big ball of anxiety, which the rest of the family stepped cautiously around.

A year after his official diagnosis, things were slightly better. I got better at being calm, at least on the surface, when he wouldn't speak to someone. I gave up caring if someone thought it was enabling when I said hi for him. I figured I'd model appropriate social behavior, and he'd know what to do when he got relaxed enough to do more than wave at his friends. (What a relief it was to find, in the most recent study of kids with selective mutism, that the parental behavior many criticize as enabling is actually a much-needed way of helping our kids manage their anxiety when well-meaning adults persist in trying to talk to a petrified kid.) Thankfully, when he was engaged in playing with other kids, Henry could talk (and yell) like the rest of them.

He made it through kindergarten, too, although not without a lot of intervening and advocating on our part. Despite the letters from his doctor and packets of information about selective mutism we provided his teacher and school, we still had to spend hours convincing his teacher that he is not, in fact, autistic or simply stubborn.

When kindergarten started, he didn't talk in class at all at first, too petrified to even say, "Here!" when the teacher called attendance. When it was his turn to be the Special Helper, his teacher skipped him because he couldn't stand in front of the whole class and state the date and day of the week in complete sentences.

He became obsessed with completing his written work perfectly, which meant he never finished it at school. "Perfectly," in Henry's mind, was just like the teacher-made model she showed them as they began each assignment. He came home and cried about being the last one to finish every day, yet when his teacher told us about it herself, she said he clearly didn't care about finishing, that he sat impassively when she told him to take it home to finish. When I tried to tell his teacher that this obsessive-compulsive behavior, like his mutism, is a way of trying to control his anxiety, and that all the readings we'd given her about selective mutism state that kids like Henry look their calmest when they are most anxious, she told me she wished she could see him the way I did. I wish she could have, too.

We asked her to modify the Special Helper activity for Henry and allow him to point to the day of the week until he was able to vocalize in front of the class. She wouldn't. We asked her to find other ways to evaluate Henry's academic progress since him reading aloud to her wasn't going to happen any time soon. She refused.

We never did convince her that maybe teaching all kids exactly the same way, with no exceptions ever, might not be the most effective approach. But when she told us to get him evaluated for special ed eligibility and then, and only then, would she consent to modify her evaluations of him, we did. Good thing, too, as that's how we met speech therapists, a school psychologist, and special education teachers who reassured us that any other teacher would have made the modifications Henry needed—and that he'd get one of those teachers in first grade. While Henry didn't qualify for special education services, he did qualify for a 504 plan, which gives us the legal right to ask for accommodations for him, such as having a parent administer oral evaluations of his reading skills while a teacher listens.

It didn't hurt, either, that the tests the school team had administered showed that his math and reading abilities were above grade level. Despite how much I detest standardized testing in the schools, after months of report cards and conferences in which his teacher told us she couldn't measure his abilities and would need to give him low scores in reading and math, I couldn't help wanting to wave the test results in her face. "See?" I wanted to ask. "We weren't lying to you. See how these adults used kindness and patience to get Henry to talk to them? Would it have killed you to give that a try?"

I wanted her to promise not to doubt her future students the way she doubted Henry. I wanted her to say she'd give these four- and five-year-olds she's been working with for over thirty years a bit more compassion, a little less antagonism. Her attitude isn't personal, though. It's reflective of the larger school culture, which teaches the "normal" kids to be more normal and can't figure out what do to with the rest.

When I asked who Henry's first-grade teacher would be before his kindergarten year ended (something the special ed team had assured us we could find out, as it would help us get a head start on getting him used to the new teacher, as well as give the teacher a chance to prepare for working with Henry), the school principal's response was, "No way." I swallowed my pride and begged him, arguing that Henry needs more time than most kids to get used to changes.
His reply took my breath away. "Look, do you know how many parents come in my office telling me that their kid is special?" he ranted.

Stunned, the only response I could think of was, "No, how many?" "Ten to fifteen a year," he said.

That seemed like a remarkably small number for a K-8 school with several hundred kids. I sat silent, then stuttered, "I don't know what your point is. Are their needs less special simply because there are fifteen of them?"

And then I cried, furious and humiliated to have been beaten down by the ignorance of this school administrator. After a year of trying to work as an advocate for my kid, I was exhausted by the lack of compassion I'd seen. Didn't this man understand that no parent wants to come in and argue that their kid is special? Didn't he have the slightest clue how painful it was to even ask for special treatment? My kid couldn't talk at school, even to ask to go to the bathroom. Did this man think I really wanted to be here, dealing with this? I'd obviously trade Henry's "special" status in if it meant he could face school without fear; since that wasn't an option, I was here, trying to smooth the way for Henry a bit and instead finding myself on the verge of being sent out of the principal's office.

Really, of course, what I wanted most was for this teacher and this principal to be the reason Henry had a hard time last year. The reality, though, is that while they certainly played a role, they're only a tiny part of something he'll be struggling with for his whole life. That's why I want to focus my anger on them; it lets me forget, for a minute, that we'll have to repeat this process of education and, I hope, compromise with teachers for many more years as Henry makes his way through the school system.

Being mad at the school distracts me from my own guilt as well. After all, on a genetic level, it's my (and my husband's) fault that Henry is who he is. Having been raised in a culture that says mother is always to blame, I can't help but wonder during some of those 3 a.m. sessions of worried insomnia that the books I always dismissed as crazy for saying if you worry during pregnancy, you're more likely to have an anxious child are true. I worried that my anxiety during my pregnancy (fueled in large part by those same books) may have somehow affected Henry at some formative prenatal stage. In the daylight I can say, "Well, duh. Of course a woman who was more anxious during pregnancy than most is going to have an anxious child. Not because she passed her worry through the placenta, but because she's probably got a genetic predisposition to worry slightly more, and those same genes got passed on to her baby." But in the wee hours, everything seems to be something I could have avoided, if only I'd tried harder, been more selfless, been more than I am.

We could have moved Henry to a different school, for instance, except that getting our three kids to their three different schools was already challenging enough—and Henry's school is right across the street from our house. Plus, he knows almost all the kids in his grade from preschool or playgroups or other neighborhood activities, and taking him away from friends he is able to talk to seemed downright cruel. At 3 a.m., though, I doubted every decision we'd ever made, from where we chose to live to my continuing to work at a job I loved, since that commitment meant I couldn't get Henry to faraway schools that might work better for him. My limits as a mother, always apparent to me, haunted me even more during my predawn hours of worrying.
Maybe, as Henry moves through the grades, he'll get more of the accepting and nurturing variety of teacher, and we won't have to repeat the hellish scenes from last year. Maybe I'll get better at stating his condition and needs calmly and unemotionally. Maybe those needs will gradually disappear as he grows older and better able to manage his anxiety.
This past week, I've been calling psychologists daily, trying to find one who has experience working with kids with selective mutism (and who our health plan will allow us to see). When I broached the subject of meeting someone who has helped kids like him feel better about talking to people, Henry lit up.

"Does he have a special tool?" he asked excitedly.

Puzzled, I asked what kind of tool he meant.

"You know, to open the cage and let all the words out."

"Oh," I said, as the image he'd come up with dawned on me. "The words you want to say?"

"Yeah! He'll open the cage and millions of words will fly out!" he said, showing me, with a sweeping gesture, how it would look.

All I want is that special tool. Lacking magical powers, I'll use the tools I have: my anger and my love.