What I Wish I Had Known

holte.jpeg About the presenter: Dori Holte lives with her husband and three sons in Chisago City, MN. Her 8-year old, Eli, is a KWS (kid who stutters). Eli started therapy when he was three years old and is currently taking a break. The time Dori used to spend taking him to therapy is now spent on writing a book for parents with children who stutter. The focus is to educate parents and help them become more effective advocates for their child. Dori has been writing for the non-profit sector for the past 10 years, enjoys creative writing, and facilitates writing classes for homeschooled kids, including her own.

What I Wish I Had Known Then

by Dori Holte
from Minnesota, USA

At the beginning I was blissfully ignorant of what was ahead. I did the waiting room thing, catching up on the latest issue of "People" and occasionally striking up conversations with other moms. This stuttering problem, I was sure, was nothing but a blip on the parenting radar. It would soon be behind us and we'd be on our merry way. That was five years and five therapists ago. His stuttering has not improved, but my understanding of what we're up against has. Blissful ignorance has been replaced with informed confusion.

It seemed each speech therapist had a different approach, and often their advice was, at least to a lay person, contradictory. One would say "never ask him to repeat himself," the other would say "show him you care about what he has to say by asking him to repeat himself."

I was told it really wasn't my fault, and promptly encouraged to change my speech patterns, make better eye contact, become a better listener, talk more slowly, de-stress the household, and don't hurry him. I'm not opposed to these suggestions, as these are behaviors all parents should aspire too. But I'm a mom. When these suggestions are so closely connected to my son's stuttering, I feel guilt. It's my job. I do it well.

He was told to watch his listener's face closely to gauge whether or not he was being understood. You're asking an eight-year old who is struggling to get out his words to, at the same time, interpret the facial features of his listener? I'm 49 and fluent and I can barely do that.

I was told I should praise him when he is fluent. Then I was told I shouldn't call attention to his stuttering but just focus on what he's trying to say. And I should never never tell him to "slow down," " take a deep breath," or "think about what you are going to say before you says it." His last therapist's entire approach was based on these three suggestions.

Contradictions exist everywhere and in every discipline. This is healthy and dynamic and keeps things moving along. I am not opposed to contradiction as long as there is context. Without context it is confusing and frustrating. It was becoming clear that this was going to be a life-long issue for my son and not just a blip on the radar. It also became clear that we, as his parents, would have to start making some sense of these contradictions in order to become effective advocates for his journey. But the biggest contradiction of all was how this realization compared to what little effort was put forth to provide resources and educate parents by the direct service providers.

Parent education can't just be about changing speech patterns and talking about feelings. Parents need real information that will help them navigate through the various approaches and philosophies with a sense of direction and empowerment. They need so much more than one hour at the initial assessment and a few minutes between each session. (It's hard to initiate an in-depth conversation when you know you're cutting into another kid's therapy time.) Parents need referrals to online and print resources. They need to talk to other parents. Most importantly, they need significant time built in for meaningful discussions, to freely ask questions with time available for real answers, and to gain more than just a superficial understanding of what's going on with their child.

My transition from waiting room fixture to informed advocate began when we were on our second speech therapist. Although the stuttering had subsided after first round of therapy, it was back, but this time it was like taking your car to the garage for the faint knocking sound. It just wouldn't happen for the mechanic. The therapist insisted that Eli really needed therapy for articulation, which, I suppose, was possible. Apparently the previous assessment by a former therapist, a tape of his stuttering, and mom's concerns just were not convincing enough. I remember feeling confused. I had that vague feeling of "something's just not right here" but figured she knew best. I asked if I could sit in on the therapy. She was adamant that this would only distract him. So for the second time I was relegated to the waiting room.

By the second to the last session his stuttering had returned with a vengeance. I called this to her attention (I think she was trying not to notice). She replied brightly, "oh, you've been through therapy for that before. You know what to do."

I do? I remember nodding amicably. As a native Minnesotan, amicable behavior is somewhat ingrained. I took Eli's hand and started racking my brain as we walked down the long hall to the clinic exit. Maybe I just missed something. Think think think! Okay, it was all starting to come back to me. Talk sloooowly, talk sloooooooly, taaaaalllllllkkkk slllooooooowly. And stop whatever you're doing and listen, listen, listen aaalll the time and make eye contact, continuous eye contact, just keep staring even when he's so stuck you want to stick your thumb into his forehead and scream "RESET!" Yes, that's what I'll do!

My determination to change my wayward ways lasted all the way to my parked car. Then I just broke down and cried.

Within a week I was beyond the amicable and crying stage and way into mad as hell. Fortunately my anger coincided with access to Internet in my home and I started doing research. Two discoveries stand out:

  1. That because of my son's age (then four), we were within a window of opportunity that could close within a year or two, and
  2. some speech therapists actually specialize in and are certified to treat people who stutter. (I figured a speech therapist was a speech therapist was a speech therapist.)

I knew I needed to find one of those folks and quickly. My first call was to our local university. I was connected with a clinic not too far from me who had "fluency specialists." Within a month I was back to twice-a-week therapy but this time I smartly insisted on being "part" of that process. The new therapist agreed to let me sit in once a month and observe. She also encouraged us to have "special time" at home by playing games while incorporating the techniques he was learning into our conversation. The time was indeed "special" as long as I didn't make him do all that speech stuff and we just played the game. Otherwise it became, let's say, not so "special."

During this period it was starting to dawn on me that my comprehension of the conversations the therapist and I had after Eli's sessions was minimal. My understanding of the terminology and therapeutic process was superficial at best and downright pathetic most of the time. After one session, the therapist said something like "Eli was having a lot of "schwa" sounds today but he seems to be doing better with his prolongations." On the way home I listen intently for Eli to say "schwa," but I just couldn't hear it! I'd have to let her know that next time. I was sure she'd be impressed with my astute listening skills and my dedication to Eli's therapy experience.

There are many more examples, but quite frankly, it's too embarrassing to go on. Although I don't make excuses for my ignorance, I feel strongly that it just didn't need to be that way. So what do I know now that I wished I had known then?

Just because someone is a speech therapist, doesn't mean they know how to treat someone who stutters. The good ones will tell you that up front and help you to find appropriate resources. The therapists who are a little less secure will let you figure it out on your own.

There are many different facets of stuttering and approaches to treating stuttering. What may work for one child might not work for the next, and for some, it may be the therapy isn't going to help, at least for now.

Chances are it will be the parent that will have to make the call as to continuing with one approach, trying a new therapist, or discontinuing therapy altogether. You can only make those decisions if you are empowered with real knowledge, both about the specific details of your child's therapy and how it fits into the big picture.

So what do I wish would have happened five years ago? In an ideal world I would have walked into a speech clinic and seen, right there in the waiting room, a library of information dealing with all facets of stuttering. A therapist would have walked me through this library, pointing out resources that were most relevant to our situation.

I would have been shown a quiet room where I could watch videos relating to stuttering and read over materials from the library. (Don't get me wrong, there still would have been a "People" magazine lying around, just to break things up a little.) The therapist would also have referred me to organizations like the National Stuttering Association, Friends, and The Stuttering Foundation of America.

The speech therapist would have incorporated at least a half hour each month to explain to me what she was doing, how my son was doing, and how it all fit into the big picture. There would be plenty of time for me to ask questions and get meaningful answers. She also would have encouraged me sit in on the sessions as often as I liked, as long as it wasn't disruptive to the therapy process.

Then even if therapy weren't working, having a greater understanding of the context and language would have helped us to explore options and positioned us to make appropriate decisions for our son. If things had been this way, I would not have spent so many years muddling through in a state of confusion, fear, and frustration. I would have spoken up when something didn't make sense. I would have asked questions when I didn't understand. And I would have walked sooner when things didn't feel right. As the old cliche goes, hindsight is 20/20.

My final message to parents - do your research, not necessarily to find answers, but to come up with the right questions. To therapists - don't let your parents become fixtures in your waiting room. Work with them to become empowered partners. Listen to what they have to say, encourage them to speak freely, and build in time for meaningful conversations. These courageous little heroes deserve at least this much from us. It's time to rise to the occasion.