Comments

What are some feelings that PWS experience upon first starting speech therapy? — 1 Comment

  1. Thank you for the interesting questions, Gayle!

    I first started in therapy for severe stuttering when I was 3 or 4years old, and don’t remember anything about it, except for a home exercise which I thought then (and also think now) was foolish – blowing bubbles in a glass of water through a straw.
    I was in some sort of therapy for stuttering every year of my life from age 4 (possibly earlier) to age 23. And for a while (first through fourth grades), I was in multiple therapies at once – both through school speech therapists, and through a community clinic.

    My early therapies (before age 17) were – without exception – totally useless. My speech did not improve during that period, and indeed it gradually worsened. The basic problem, looking back, was that my speech therapists (they weren’t called SLP’s then) just did not understand stuttering. (This was from the late 1950’s to about 1970.) School speech therapists placed me into practice groups with kids with articulation disorders, to practice sounds I already knew how to make – simply because they had no idea what to do with me, a child with very severe stuttering. I also remember conversing with therapists about my life activities and interests, and being read stories to, for some reason. (I thought this latter activity was really ridiculous, since I knew how to read from the age of 3.)
    To get to your first question: During my elementary school years, even though I found speech therapy really boring and useless, I nevertheless didn’t mind going. I liked the time off from class – which I also found boring, since I was substantially ahead of the other kids academically. And I guess that deep inside, I was hoping that SOME therapist would know what to do to actually help me with my stuttering. (But during those years, none did.)

    I finally received my first real help for stuttering when in high school, as a speech pathologist (the term was coming into use by then) introduced me to traditional strategies such as pullouts, reducing secondary symptoms, and reducing avoidances. My block lengths reduced substantially.
    Initially I was very skeptical that there actually was such help available, and I had been getting tired of useless therapies. A teacher of mine told me that he knew of someone who could help me with my speech, and had actually asked her about me. The message from the therapist was: “Yes, tell him that I can help him.” I told this teacher that I had gone through many therapies, and none were of any help at all – and I was skeptical that any could. But he insisted that this particular speech therapist knew how to help me. So I went. And he was right.

    The help I received then (though partial – I still stuttered severely) rekindled an enthusiasm to try more therapies, and different kinds. Deep inside I was hopeful to find some kind of therapy that would “cure” me. After starting college, I was becoming increasingly worried about how stuttering would impact my future, so I was willing to try anything that sounded promising.
    During the next six years, I tried a variety of therapeutic approaches, including three fluency shaping programs. These resulted in substantial fluency improvements, but only temporary ones. Typically I would experience much fluency for months, but each time my speech completely collapsed after a while, and I returned to my severe stuttering.

    What I found especially exasperating – in retrospect – were the CLAIMS of clinics offering fluency shaping programs for a huge fee. I heard or read of claims such as “98% of our clients are completely freed of stuttering for a lifetime”, or “this technique has a 92% cure rate for stuttering”; or “if you follow our instructions, there is a 94% chance you will never stutter again in your life”.
    Like many others, not knowing any better at the time, I believed these claims – and managed to get the money together to take these programs. I kept wondering: “Maybe THIS program is the one that will cure me! Who knows? I should give it a try!”
    And sure enough, there was always some improvement that lasted for a while. But nothing lasted in the long term, despite vigilant and dedicated efforts on my part.
    It was always a bitter disappointment when these clinical programs eventually failed with me, and I realized that what they promised was just not reality.
    I also came to know that I wasn’t alone in this. Years later, through the self-help movement, I met many PWS who had similar experiences.

    And this brings me to the second part of what you ask.
    From my own experiences, and the experiences of many other PWS who I have known, this is an important rule that I hope all SLP’s will adhere to: Never promise more than you can deliver! NEVER. Don’t tell clients statements such as: “There’s a 90% chance that what I teach you will bring you to the point where you will never stutter again, as long as you follow my instructions, and you work hard enough on your speech.” I have heard that, in slightly different wordings, from quite a few clinicians in fluency shaping programs. That sets the bar of expectations extremely high, and when those expectations come crashing down – as they almost always will – there will be disappointment and heartbreak. And with that type of wording, there is also a placing of fault on the client’s shoulders. When relapse occurs (and it almost always does, based on my knowing hundreds of people who stutter), the feeling that “it’s my own fault” adds greatly to the burden that a PWS faces in those circumstances.

    To continue my story:
    At the age of 30, I tried again with a fluency shaping program, “Precision Fluency” (originated by the Hollins Communications Research Institute, Roanoke, Va.), in which I experienced more success than with any other program. After three months of intensive daily practice following the three-week program, I achieved consistent fluency everywhere, in all situations. For me at the time, it was a fantastic dream come true. I thought I was totally cured!
    But eventually, after quite a few months, my fluency disappeared. For years I kept going back for fluency refreshers, hoping to bring the old magic back. And each time, the magic came back – for a while. But each time, after a period of weeks, or sometimes months, the fluency disappeared and my stuttering returned.
    I came to realize that I could only maintain my fluency gains with intensive daily practice of an hour or more, coupled with careful monitoring of techniques in every conversation. Sometimes I did this, but the efforts required for this maintenance were enormous.

    After about 15 years of such off-and-on fluency, I decided to simply accept myself calmly and peacefully as a person who happens to stutter. And I experienced increased life happiness, and less pressure on myself, as a result. That change in attitude occurred about 20 years ago.