Following is the fifth in a series of interviews that shaped the narrative of my next book, VoiceS Unearthed: The Impact of Early Intervention on Those Who Continue to Stutter. (Names of interviewees have been changed for reasons of confidentiality.) This past Tuesday, I featured 41-year-old Courtney. Today I feature Courtney again, along with her parents, John and Linda, for a broader perspective of this experience.
John and Linda – parents to 41-year-old Courtney
The only goal on their radar was fluency. Courtney and her parents were desperate for the stuttering to stop and were willing to go to great lengths to make that happen.
Mom: “I stuttered and I guess I was one of the 20% who just stopped. Our daughter’s older sister also had some disfluencies and she stopped so I thought, okay, that’s what happens. I didn’t think anything of it at first and the pediatrician suggested we wait, but it got to the point where I had seen her suffer enough and we started taking her to therapy. As a parent you think there must be something that can be done. I needed to actively do something to help them.”
Dad: “Our initial goal was to help make it go away.”
Mom: “Eighteen years later, in 2004, she was in college and we went to our first National Stuttering Association conference. Our daughter was a new college graduate. I remember looking through the program thinking ‘God forbid we miss THE talk that was going to cure her.’ I can picture this – it was so heartbreaking. We were in the hotel room. She opened up for the first time and told us how horrible it made her feel when we took her to therapy knowing that we wanted to fix her and it wasn’t working. It was as if she was disappointing us.”
Courtney: “We were all sold the wrong story. I WANTED to be fixed and the therapist said you SHOULD be fixed and we COULD be fixed.”
Dad: “It was not geographically convenient to us at all but someone must have told us that the therapist we went to was the best – that would have been our MO.”
Mom: “Here we are – the distraught, unknowing parents. We didn’t know what to do or how the hell to help them. This therapist told us she had grown up stuttering and had developed a machine that she said worked for her. She was fluent – so I thought, “OKAY! Here we go.’ The machine measured the movement of the diaphragm. We bought one of the first Apple computers in order to use this machine. Courtney practiced and practiced. Sadly when you’re parenting, you don’t know what you don’t know. You throw a dart in the dark and hope the dot you’re picking is the one most appropriate for the issue. You have no context to provide some degree of assessment.”
Dad: “Could I have done more – or something different?”
Mom: “When you stop therapy, you feel like you have now failed your child.”
Courtney: “It’s your fault Mom, you talk too fast.”
Mom: “We were told you talk too fast.” (laughter)
A turning point:
Dad: “The iceberg analogy* was like a light bulb going on for me. The disfluencies were the tip of the iceberg and when our daughter engaged in activities focused on desensitization, the iceberg got smaller. The therapy she received as an adult with Vivian Sisskin at the University of Maryland focused on avoidance reduction. For sure – the focus on fluency did more harm than good.”
Mom: “You’re just setting the child up for emotional stress, failure, depression. We need to help our kids to have the most joy out of their lives. In America, everything needs to be cured. How many years do they dupe their patients before they say, ‘this is not working.’ Most clients just peter out or blame themselves.”
**https://www.stutteringhelp.org/blog/sheehan-stuttering-analogy