About the Author:
Doreen (Dori) Lenz Holte is a writer and mom to a 25-year old son who stutters. Her first book, Voice Unearthed: Hope, Help, and a Wake-up Call for the Parents of Children Who Stutter was published in 2011 and is becoming even more relevant as the focus of therapy for children continues to shift away from fixing. Dori is working on her next book project – unearthing parent and adult voices around the impact of childhood speech therapy for those who still stutter, due to be published by year-end. She is also the founder and administrator of the Facebook group – Voice Unearthed – the largest parent support Facebook group for stuttering in the world. Please join us! Dori loves time with her family, games and cards, reading, puzzles, and relaxing with a good TV show or movie. She is enthusiastically easing her way into the more mature stages of life.
“Speak the change you wish to see…”
That’s pretty much all I’ve been doing over the past fifteen years. I was dissatisfied and heart-broken over the impact of six years of childhood speech therapy on our son (now 25) who stutters. All that effort accomplished was increased silence and withdrawal. This led me to write my book..
I’m at it again – only this time I’m giving others the opportunity to speak the change they wish to see. I’m interviewing parents of children who still stutter and adults who still stutter to better understand the impact of childhood speech therapy on their quality of life. What did they feel was helpful? What did they feel was harmful? What type of change would they like to see?
Over 50 individuals have shared their experiences, giving of their time and hearts, for my next book project. Some experiences are difficult to hear and damage is still being done. Others give me hope – and admiration for professionals and leaders in this field who are leading the charge for change.
In the meantime, there seems to be a chasm as large as the Grand Canyon when it comes to what some professionals are proposing and what today’s parent of a three-year-old who has begun to stutter is most likely to experience. I’m hoping that sharing this array of stories helps move us more quickly towards eliminating that chasm and providing safer, more effective approaches to treating children who stutter. Here’s a sampling:
Mom of a five-year old:
Our daughter started speaking fine and then the stutter started. It was really bad, very extreme. We started speech therapy at two and one-half and continued up until a couple of months ago. Two plus years of doing speech therapy every week and by this time I was so tired of it. We mostly did Lidcombe – went through five SLPs. The last one finally acknowledged that Lidcombe wasn’t working. I could only say “smooth talking” so many times. It was getting hard on my mental health as well. Under the advice of a new therapist, we tried another method – trying to get her to talk like a robot. Fifteen minutes a day our daughter was supposed to talk robot. It wasn’t good for either one of us.
It was a battle and she refused to do it.
You want the best for them and the professionals mean well. All the information is so conflicting and there’s no one to turn to. The family doctor says the only hope is speech therapy. Been there – didn’t help.
Then I found out that an SLP doesn’t necessarily have to have knowledge about stuttering. Our daughter’s stuttering goes up and down. I don’t know if it was the speech therapy or if this is the way it is. As far as I knew at the beginning, Lidcombe was the only thing out there. The first SLP we used didn’t have any experience with stuttering and was using Lidcombe text-book wise. I was doing Lidcombe all the time, every day – taking 15 minutes for special time and catching her throughout the day – “oh, that’s smooth talking.”
Since I just totally stopped everything to do with speech and language therapy, it seems to have gotten better. My husband and I were just talking about it – it seems like there’s less stress. You’re the first person I’ve talked to who has given me a different perspective and told me about other options. I say to myself, “accept the way she is, this is the way she’s going to be.”
25-year old adult who stutters:
I have an early memory around 2nd grade about something being off with my speech but I don’t remember if I was stuttering or not talking because of my stuttering. I’d gone to a couple of different therapists who were about fluency-shaping and fixing it. I didn’t like group therapy because I didn’t like hearing someone else stutter. Do I sound like that? I didn’t want to identify as someone who had a stutter. I didn’t want to relate to others who stuttered.
My next memory is late middle school. I got pulled out of school to see a speech therapist. It was definitely a fluency-shaping therapy. Weird exercises, take a deep breath, vocal stuff, one point where she massaged my throat – put on gloves, got lotion, had me talk. I kind of looked forward to it because it was relaxing and the lotion smelled good. But I look back and think, what were they doing? Who would think that would fix my stutter?
I quit seeing her, but saw two more therapists at that same office. More fluency shaping but not the weird exercises. They had me taking a deep breath and exhaling and counting as high as I could. I could count pretty high by the end but I’m not sure how much that helped my stutter. After that I would just talk. She would have me read and tell her about my day all while she was counting my stutters. It was good when I only had a couple of stutters but it did not stick. Speech therapy worked temporarily, but it didn’t change anything internally. I only felt good when I didn’t stutter.
In college I heard about avoidance reduction therapy for stuttering. It was a group therapy experience and it took me a while to buy into it. I didn’t want to be in a room with other people who stuttered,hear them and be judged by them. As I peeled away the tricks and started to show my stutter, I became more comfortable. Early on a guy in the group walked up to me, made eye contact, and stood there and got it out and it seemed like he didn’t care. I remember thinking, “that would be cool if I could not care about my stutter.”
I wish I would have been introduced to ART (avoidance reduction therapy) earlier because it helped me to not feel negative about my speech. The reason I wanted to cure my stutter was to not feel so negative but if I don’t feel negative about it then I don’t have to want to cure it. The feelings I had were worse than the stutter – way worse. I had all of these tricks to try to not stutter, but the tricks made it so much more noticeable and prominent and now if I just let myself stutter it’s quicker, it’s not as tense, I don’t feel as bad about it and I’ve learned the people don’t care if you stutter. No one really cares. If I had come to that realization in my tweens, it would have been a lot better. I would not have had as much anxiety about presentations, about meeting new people in groups and parties and things like that. It would be nice if kids who stutter could experience that earlier on.
———-End of Samples———-
These interviews have provided a wealth of insights creating urgency around the need for change – the need for a therapy option for children that doesn’t focus on fixing. Also needed is expanded opportunities for parent education and empowerment. Many of the parents I’ve interviewed conveyed assumptions made in the process of seeking out a therapist including:
- Fluency is the primary goal of therapy.
- Any speech therapist can treat stuttering.
- All speech therapists have education, training, and experience treating stuttering.
- The treatment provided by the therapist available to you is the only treatment/best treatment.
- The therapy would do no harm.
The change many parents want to see is more information and transparency up front – in order to dispel these assumptions. Changes I would like to see include:
- Educating parents about the potential of negative outcomes of a therapy focused on fixing including increased silence and avoidance behaviors.
- Providing speech therapists and students of speech therapy with expanded educational opportunities and training around recognizing and addressing the emotional and psychological impact for both the parents and children.
- Helping parents to understand, up front, that there are a variety of therapies with varying goals. Also giving parents unbiased information on what those therapies look like and how goals can influence outcomes.
- Increasing parent’s capacity to address the emotional and psychological aspects of stuttering, (bullying, self-confidence, etc.), to become their child’s best advocate, and to infuse joy, fun, and acceptance into their world.
Shifting from a focus of fluency to one of quality of life is not an easy shift for a parent, a child, or even an adult to make, but it is an important one. Here are several powerful quotes from adults I interviewed:
“I am no longer pursuing a dream of fluency of speech. Instead it’s a dream of fluency of life. And guess what? Dreams do come true!”
“In my late 30’s, I realized that my definition of a good day was one when I do not stutter. I shifted to defining a good day as one where I do stutter, especially in front of a stranger. Ultimately I became a trained public speaking coach.”
I want children and their families to be empowered with support that enhances “fluency of life” and defines “a good day” as one where our kids communicate joyfully, regardless of whether or not they stutter. The change I want to see is support that results in keeping these kids talking and engaged in the world around them.
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