Two Concerned

People kept staring, sometimes glaring at us, the other night when we went out to dinner. L's speech has been the worst yet over the last couple weeks, and right now when she speaks, her voice gets very, very loud when she is stuttering. Very, very loud. So loud that it interferes with other people's dining experiences. If she were just loud, we could shush her. But she's not loud when she's fluent, only when she's stuttering. Granted, she's stuttering almost all the time these days, so it was fairly consistently loud that night, and she right now stutters in a way that the average person might not recognize as stuttering. ("AHHHHHHHHHHH-AHHHHHH-AHHHHHHHHH-AAHHI WAAAAAAAAAAA-WAAAAAAAAAA-Want water." Did I mention she is VERY loud. And yet, it's not as if she can help it.

We just did the best we could, tried to ignore the looks others were giving us, tried not to let L see that we were flustered, and tried to keep the kids' behavior at its best so people wouldn't mistake her loudness for misbehavior, or our failure to shush her for bad parenting. The good news is that L seems to be completely oblivious to her stuttering now (although the SLP seems to think if she's getting louder, she is aware of the stuttering on some level, but she's not crying and asking for help at least). And honestly, I would much rather she be loud than frustrated or ashamed.

Now if we could just work on our frustration -- our inability to help her, the constant loudness of this family what with not only the very loud stuttering but also the very loud three-year-old who likes to make fire alarm noises and the very loud crying and the very loud electronic toys and the tendency of both kids to talk over everyone else even though we've been working on that, really, we have. I'm a stutterer myself, and even so, I am sometimes at a total loss for appropriate ways to deal with L's speech. I am surprised at my frustration, and ashamed of it. I confessed to my husband one night how frustrated I was. A look of relief washed over his face, and he told me he was terribly frustrated, too, but was ashamed to tell me. I can only imagine how lost and frustrated and guilty non-stuttering parents must feel when their kids stutter.

In the study of stuttering, there's a history of blaming the parents for the onset of the problem. These days the parents are blamed less (or at least less overtly), although they still might be held accountable for not providing a relaxing enough home environment for the child's improvement. My parents were blamed for my stuttering. A psychologist who had never met me told my father I stuttered because I was afraid of him. My father was understandably upset, and he spent years blaming himself. The research these days exonerates my parents. They didn't make me stutter, except in the hereditary sense. Their reactions to my stuttering might not have helped me to deal with it in the most positive or constructive manner, but they didn't cause the problem.

Now, as a parent myself, I am particularly sensitive to implications that the parents are at fault. A few days ago I began reading A Stutterer's Story by Frederick Murray, a stutterer and speech pathologist. The book was published in 1980 -- not so long ago, really, but far enough back that the parents were still getting lots of blame. And so we run across gems like this:

Sometimes, especially when there is a family history of stuttering, adults will overreact when a child is going through this normal disfluency stage. The danger then is that, by making an issue of his repetitions and prolongations, the adults will make the child self-conscious about his speech and actually encourage the development of abnormal speech problems.

So the thinking was that adult stutterers make their kids stutter by having a cow when little Johnny says a sound twice. It couldn't possibly be that the stuttering family members are the first to pick up on the subtle difference between normal disfluencies and the beginnings of tense/abnormal/stuttering-like disfluencies, could it? I'm convinced that stutterers have a radar for other stutterers. Sometimes I can pick them out before they actually stutter. Once, in a room full of speech pathology students, I picked up on the professor's stutter weeks before they did. They thought I was crazy until one day he blocked in class.

But back to the book. Only a few pages later, we have another gem:

Parents sometimes respond to the development of a child's stuttering by wondering what they have done to him to make it happen. This question is probably unjustified; furthermore, when it does arise, it can influence parental behavior that will work against the child's improvement.

Interesting. So even though the world of speech pathology is required to wonder if the parents are to blame, the parents themselves must not wonder such things, for such wonderings will cause more damage than the parents have already caused.

I am so glad when I read those passages that so much has changed since that time -- for example, the studies on biological children of stutterers who were adopted by non-stuttering parents and how those children were more likely to stutter than were other children regardless of who was parenting them; or the research by the Human Genome Project that found a very strong family tendency in stuttering despite the lack of any one particular genetic code for the disorder. I am glad to be raising my children in a more informed era.

And then I read the following from the handbook the SLP gave me on the program we will use with L:

[This program] accepts for treatment any child whose parents are concerned that the child is beginning to stutter. We do this for two reasons: One reason is that the parents are almost always right. We have only seen two cases where the parents were worried and the child was actually not at risk. But our second reason is that parents who are worried about their child's speech react differently to it. The disfluency may make them upset, nervous, angry, or depressed. These reactions are perfectly normal, in most cases, and usually stem from the parents' love and concern. But often, in spite of their good intentions, the way the parents react to disfluent speech communicates inadvertently to the child that disfluent speech is to be avoided at all costs. So the concern of parents may end up contributing to the problem, and we treat it as a risk factor.

It bothers me not so much because I disagree about the parental frustration being a bad thing for kids, but because on L.'s initial speech evaluation, the SLP wrote that I was "a concerned parent." Now, NOW, I know what that means: she didn't think there was a problem, but since I was concerned, she would humor me. It makes me angrier than it should. I realize they admit that "concerned parents" are usually right, but still, the implication is that if the child is showing only normal disfluencies and the parents show worry about it, then that could turn the normal disfluencies into true stuttering. The idea is still out there that parents sometimes create stutterers out of perfectly normal children.

And I admit I can't stop thinking of that label "concerned parent." I admit that I am thinking about how frustrated I felt at the restaurant the other night. I am thinking that maybe L saw through my feigned patience and maybe has been reading my worry and concern all this time and maybe, just maybe, I have driven her to stutter so severely. It makes no logical sense, I know, and I don't think I really believe it. I don't think my husband really believes he is at fault, either. But I know he thinks about it, too, and remembers the quiet, tearful conversation we had on the couch the other night, in which we shared our feelings -- in which we confessed our guilt.