Back to the Future

blomAbout the author: Anita Scharis Blom, born and raised in the Netherlands, is living in Sweden. She works as an operation manager for the Workers’ Educational Association. She is chairperson of the local stuttering chapter, international contact and former chairperson of the Swedish stuttering association, vice chair of the European League of Stuttering Associations, and member of the advisory board for the International Stuttering Association. She is a national and international speaker on stuttering and has her own stuttering consultant company. She is also a leader of national and international children and youth camps. She has stuttered since she was 9 and had a troublesome youth, now inspiring people who stutter of all ages, they can make a difference.” Her device is “S-s-sure I s-s-stutter. What are you good at?”scatsis@hotmail.com
scatsis@gmail.com

The movie with the same name was produced in three different parts. The first movie was quite surreal. Part two was just as surreal, but we now recognize the style and the characters. In part three we felt we had been there, done that, and just enjoyed the ride.

My life’s part one is called: Stuttering. It’s about my stuttering journey, from being a talkative and happy child until the age of nine, to a girl with a heavy stutter and a truckload of difficulties coming with it. No acceptance at home, no understanding from the people around me, no future to look forward to. Bullying, sexual and mental abuse, you name it, all connected to my stutter. I learned that what I did was wrong, I was faking, I was an idiot, I should not study, there were no jobs available for me and my life was over. Me, the stutterer, the outcast, the weirdo, the fish. Me, the outgoing girl, now withdrew from all the fun things in life and was hiding inside my home, inside myself, keeping all my pain and struggle inside myself. There were no answers, no treatment and I felt so alone. I gave up on life itself, but (luckily) I failed also there.

But suddenly things changed: I found the stuttering community at the age of 27. By working on myself, with the support of my newfound friends, I could now go back to my past, face and deal with my pain, and go back to the future. I again became the person I was as a little child: happy, outgoing, although this time with a stutter. I not only learned to deal with a life with a stutter, I did something with my experiences. I became active on the local, national, European and International boards. I travelled the world, THANKS TO my stutter, talking about stuttering. Me, who was told not to learn any languages, as I wouldn’t go anywhere anyway. I talk, to children, teachers, politicians and to the person next to me on the bus. I talk to the radio, tv, newspapers and magazines and am all over the social media and internet, always talking about stuttering. My biggest goal in life is to pass it forward, to give children and young people who stutter a voice and inspire them to not let anyone shut them up anymore. (If you’re interested to read more about my stuttering journey, please check out my previous online conference papers.)

My life’s part two is called: ME. When I gave birth to my lovely daughter, my pain started, growing steadily as years went by. I changed, from being a happy, wild and crazy women, with so many jobs and projects people got tired even hearing what I do, into a person who says No. No to all the things I used to say yes to, before the question was even finished, as eager as I was to jump on a new band wagon. For 18 years I tried to hide my pain from the outside world, pretending everything was ok. The only people who knew were my closest family members and the medical world, just to hear there was no treatment. I didn’t know who to talk to, how to explain, so I shut up. And because of my silence, I got no acceptance, no understanding, and lost faith in the future. I was faking, lazy, boring. And felt so alone.

But suddenly things changed: I finally got accepted to a special clinic. I learned that the reasons for my pain were many and they all had a name, names I already read about, so I knew what was in store for me. But imagine my surprise when I received a diagnosis of something I did not know existed? ME is an acronym for something I can barely pronounce, there is hardly any treatment, there is almost no research on it, it is surrounded by many myths and misconceptions, and I had never read or heard of it, even less met anyone who has this condition.

Hey, I have been on this journey before!!! It’s the same “movie” all over again, but with a different theme! Once again I’m finding myself looking for information, learning about how tough life can be, but also learning about how people deal with it in order to live a life as normal as possible. What I feel is real. It has a name. Again I face people who believe it’s “just a fashion thing that I should just stop doing that ” and of course they know exactly how to do that… Again I find myself choosing whether I should try to explain or to simply move on. I am no longer treading water, but can, again, move forward with the new insight and knowledge. Once again I’m searching for associations and expertise and once again I stand up and start talking about it, which leads to personal encounters with people who have the same condition and people who haven’t “come out” yet.

The difference between part one and part two of my life’s movie is that this time I quickly found what I was looking for, thanks to the internet. From self-help groups to Facebook, from personal stories to research, or lack thereof … (And again, I am asked to become a member of the association and want to be on the board, but alas, as my heart and time is devoted to the stuttering community . J) I am still at a state where I’m thrown between hope and despair , recognition and denial , but as I’ve already gone the same way thirty years ago , this time it only took a month before I started talking about it, with friends and family , with my boss and my colleagues. They still don’t understand it, but they now know there are things that are hard for me and that I need adjustments and their acceptance when I don’t live my life like they live theirs. What if it had gone so smoothly for me and many others in terms of stuttering?  I would not have found the self-help movement, treatment , friendship and understanding, or found the guts to talk about it to help and get rid of all the myths and shake off the shame stamp. Our symptoms are real. We didn’t choose this. It’s not “between our ears”, but a neurological problem.  Our struggle is severe, but that turns us into fighters. We face the fears and hurdles and do it anyway. Away with the shame and forward with pride!

So why is this story about something completely different from stuttering ? Is it really that different?  Both are surrounded by myths, shame and silence. It is difficult to get the help and understanding from the outside world, it’s hard to find proper treatment and research, but there is a large network of both patients and therapists. And best of all, my life is enriched with new, powerful and positive friends. I also learned that my stuttering journey is not my own, nor just related to stuttering. There are many people with different conditions, making the same journey. So if we learn from each other, unite and together raise our voices to claim our place in society, we can make a difference. One butterfly hardly moves the air. A world full of butterflies can create a hurricane! I am happy I went through part one, as otherwise, I wouldn’t have been ready for part two.  Now I know that even these new challenges will enrich my life and as with stuttering, make me stronger and more determined . I am now looking forward to part three. The sequel.

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Comments

Back to the Future — 92 Comments

  1. Great paper Anita! As usual, you dig right in and share your own personal story and journey to help others. I remember when I first found the stuttering community and began reading about others who were experiencing the same as me. It was so exhilarating to learn I was not alone. It meant a lot to me to have other people put into words what I was not able to do yet.
    It has also meant so much to me to eventually meet in person many of those individuals, such as yourself, who dared to share their personal story.
    Thank you for having the courage to share from your heart.
    Pam

    • Thanks Pam. It’s so important for a person to find others in the same situation. But also for parents, to meet other parents, partners, to meet other partners, etc. We often think we’re alone and fight the battle alone, or even worse: hide. Thanks to the internet we now have accessto so much information and it’s so much easier to find information and support. but the step to join a group is still big, so I’d love to have some kind of a buddy system to get people cross that line. So the more we tell our stories, the more people might dare to seek contact and cross that line together with us.

      Keep talking!

      Anita

  2. Hi Anita! Good to read your paper! I remember meeting you for the first time in Vienna and enjoying Vampire with you! I’m proud to call you my friend and continue to be impressed with your wonderful advocacy for people living with stuttering. Finding support groups is important for LOTS of issues! I’m glad you found good support for your new diagnosis, too. If ME is what here in the States is usually referred to as chronic fatigue syndrome, I’m wondering if you have noticed differences in your fluency as a result?

    Judy Kuster

    • Thanks my dear friend Judy. Yes, I too remember the vampire. it scare the you-know-what out of me, but at the same time, cured me from my vampire fear! And maybe that’s what support groups are all about: to face your fears together with people who understand and to hopefully conquer them. I’m so happy we have the internet now, with loads of information and online support groups. I now found the reumatic association, the fibromyalgia association and the ME association (yes, it’s cfs, but it’s so much more than just being tired). I have not joined all of them, as I might wind up becoming active there :-), but simply meeting these people, recognizing, no need to explain, simply knowing there are people out there who I can contact, is making it easier to cope. And I’m also happy for organisations such a FRIENDS for young people who stutter, and more and more sub groups are popping up, for ex parents to children who stutter, therapists who work with stuttering etc, and I’m hoping for (more) groups for partners, teachers etc. They too have their questions and their worries.

      My fluency differs when I’m tired, stressed, in pain, just like anyone else I guess, but I found that working on mental state (trying to cheer me up when my physical state is not all that) does help. But on the other hand, i stutter and that’s ok. For what I say is worth repeating. 🙂

      Keep talking!

      Anita

  3. Hi Anita! Thanks for the wonderful paper. Your writing is exactly what people who stutter need to read to be encouraged to get out there, and share the Journey with us. It’s a wonderful Journey, and I’m fortunate to be sharing it with you.
    Hanan

    • Thanks so much, Hanan. We all have a journey and we might be surprised how many share that journey, if we’d only dare to talk about it! Meeting a person who understands what you’re talking about is like coming home. You, if anyone, knows that. To be able to talk for hours about it, or to not talk about it at all, it doesn’t matter, as they understand you anyway. To always have people to pick you up when you’re down, and to share your joys with. Sharing sorrow deminishes it, sharing joy doubles it. Isn’t friendship amazing! 🙂

      Keep talking!

      Anita

  4. Hello, Anita. And thank-you for all that you are doing especially for women and girls who stutter to recognize and embrace their power to be who they are because they can turn to look at you and see you are! Best, Ellen-Marie

    • Thanks, Ellen-Marie for your kind words. Other people have (or choose) to live with us for parts of our lives. We have to live with ourselves every minute of the day. So we might as well love ourselves, just the way we are. And many of us think we’re all alone, feeling, looking or acting in a certain way, while, if we dare to talk about it, we might find out people like us are just around the corner, or maybe even already in our friend group! We should embrace ourselves and pet ourselves on the back for coping and still standing strong. And paying it forward, so that many more find that love, that strength, that united feeling we are all looking for.

      Keep talking!

      Anita

  5. Anita,
    Thank you for your powerful story. As an aspiring speech-language pathologist I find people with your strength and positive outlook to be so encouraging. Your story has proven the importance of support and determination. Even when times have been so low, you have been able to bounce back up and continue to inspire those around you!
    Thanks,
    Rachel

    • Thanks so much, Rachel. Your reply shows you’re not only an aspiring SLP, but will also become an inspiring one! I hope you will help us to bring together people who stutter, as well as their parents, partners etc, to exchange questions and emotions, so we can all share our ups and downs, and together lift our heads. There’s so much energy when working together. Bringing a child’s friend to the therapy room, might they can do speaking exercises together. Have group sessions for not only people who stutter, but also for their parents or partners. Being together, working together, sharing together, so that we can lift each other up and laugh together, working togather towards different goals, is what true power is all about. Your help is most welcome. Thanks for working with us. .-)

      Keep talking!

      Anita

  6. Hello Anita! Thank you for your amazing story and your willingness to use your journey as a way to help others find the same confidence that you have found! I’m studying to be an SLP, and I am wondering if you have come across people who stutter in your work who are too shy or afraid to seek support from communities or self-help groups. In your experience, how would you suggest that a therapist encourage someone who is afraid to step out of their shell to seek this type of support? It seems to be such a huge part of helping someone who stutters move forward and find the strength to be themselves!

    Thank you for your input!

    Allison F.

    • Thanks for your kind comments, Allison. The answer to your question is unfortunately Yes. Becoming a member of a support group, an association or a chat group means you have to admit to yourself that you stutter. That on itself is a huge step. By joining you also show others you stutter. Yet another step. So you have to start by accepting yourself as you are and accept the situation you’re in. Now that doesn’t mean you stop working your way towards a speech you feel comfortable with. It just mean you have to learn to live in the now. Mindfulness. You cannot change the past and wish for your stutter never to have occurred. You don’t know yet what’s ahead and cannot focus on a goal that’s too far ahead, as you might give up on the way. If you only focus on “my life will be perfect it I would get the magic pill”, you might be disappointed. Look around you. Are all fluent people happy and perfect? You have to take a moment and look at your situation TODAY. If I come to you, there is a reason for that: I stutter. And as I use to say “Stuttering sucks, but life doesn’t”. 🙂 Many people have a partner, a study, a life, kids and most of all: fun! So to find out how they do it, how they cope with life, is to try and get them to see all the positive sides of meeting others who have been there, done that. Sure, you might think we all are successful, happy people. Wrong! We still stutter, we still struggle, we have been through hell and back. But we have found people who GET it and who pushed and pulled us through situation that were hard, and who walk beside us on that bumpy road. If you want to be you, we’re with you. If you want to work on your speech, we’re with you. We help each other with speech training, we eat and dance together, we are desperate, angry, laugh and cry together. If your clients are children, try and convince their parents it’s not just important for children to meet other children, and adults (!) who stutter, but also for the parents themselves. And partners. And siblings. And others around us who join our path. And we’re happy to join first timers to their first meeting or conference. Maybe even you, as an SLP, would like to come and see what it’s all about. It’s life-changing for so many. And you’re all so welcome!

      Keep talking

      Anita

  7. Anita,
    Thank you so much for sharing your personal experience and for being so brave. It makes me sad to hear that people who stutter still have negative experiences in theirs lives. I believe stories like yours are essential to expanding and enlightening the perspectives of everyone,fluent speakers and people who stutter alike. Personally, I find this especially important for my own knowledge for my future career in Speech-Language Pathology. I will never be able to understand what it is like to be a person who stutters, but your story helps me gain a better understanding. What do you feel is most important for clinicians to focus on in therapy?
    I admire you and wish you the best as you continue the rest of your journey with a renewed sense of hope! Thank you again!
    Kelli S.
    Idaho State University

    • Thanks Kelli for your support. Do read my reply to Allison above. And also remember stuttering is so much more than a speech problem. So be creative and learn more about other therapies such as KBT, NLP, Mindfulness, maybe even about relaxation, yoga, Qigong, gym etc. That way you can guide the client to ALSO try these methods to work with mental and physical luggage many of us carry with us. Be creative. Try group therapy, add friends, partners, family members and teachers to the therapy room. Bring fun into the therapy room: song, music, jokes, role play. Use modern media and record exercises in mp3 or video and ask the client to do the same. Also step outside your therapist role and simply use your gut feeling and ask yourself “Is this really working for this very client or can we step outside the box and do something completely different?” Put yourself in your clients shoes. Would YOU do the exercises you ask the client to do? Why not ASK the client what he/she wants to work with and give options. Go to a self-help group and meet people who stutter who are not your clients. That way you can learn more about stuttering in real life and ask questions you might not like to ask your clients. We’re here for you too. 🙂

      Keep talking!

      Anita

      • Thanks for sharing your experiences, your emotions, and your treatment advice with us. I too am an aspiring SLP in graduate school at Idaho State University, and I’m amazed by your strength and honesty! You are an inspiration to all people who are struggling, not just with stuttering!

  8. Anita,
    I can imagine how difficult it must be to have a ‘mysterious’ medical diagnosis on top of a stutter. I appreciate your spirit and conviction to continue being a strong individual for yourself and others! I have been doing some studying on stuttering and understand that there can be a familial tie for individuals that stutter. My question is did you ever have any doubts or fears for your child(ren) as far as a stutter was concerned? I personally do not stutter, and so cannot imagine how it must be, but I am curious and was touched by your story.
    Thanks so much,
    Daniel Carnley
    Idaho State University Graduate Student

    • Thanks, Daniel, for your comments. (Does that mean we have a male SLP here? 🙂 ) Also thanks for your interesting question. Yes of course I was worried, but my daughter doesn’t stutter. That doesn’t mean we can breath out, as both I and her boyfriend’s mother stutter, so there is a big risk they will have a child who stutters. She already told me she hopes her child won’t stutter. But not for the obvious reason. Because “mom, you will be a dread as you know it all and will be on my back the whole time with your advice”. 🙂 She’s probably right, as I know it can go both ways, the road of determination, success and happiness, no matter what, but also the risks, the long road for help and understanding, the laughs and the tears. But as least we know what to do and where to go, so at least we can be there to help and support.

      Keep talking!

      Anita

  9. Anita,
    Thank you for your amazing and honest story. As a current speech therapy clinician, I am overloaded with much information of diagnosis of various disorders, treatment plans, insurance information, dozens of sounds, etc! Through all my classes, I’ve come to find it would be impossible to teach us graduate students how our clients may feel. That’s why I am so happy to read your inspiring post. Trying to get a understanding of how a person who stutters may feel, instead of pretending like I do because I was in school for 6 years, is eyeopening. You are an inspiration, and I think it is amazing reading about all the groups and organizations that you are a part of. Thank you for sharing your beautiful story.
    Monica

    • Thanks Monica, for your valuable and honest thoughts. Yes you have a truck load of diagnoses and stuttering is not he easiest one, as so much is still unknown. And yes, it’s not easy to learn and understand how we feel. That’s why it’s so important to meet people who stutter an ask! You are experts on treatment, but we are experts on our own stuttering. So feel free to ask, both your clients and us who stutter. We’d be happy to have you at our meetings and in our chats and social media.

      Keep talking!

      Anita

  10. Anita,
    Thank you for your paper and telling your story. I think it is so uplifting to hear success stories from those who stutter. As a future speech-language pathologist, I think it is important to remember the bad times and the good things that can come from then. What specific advice do you have for those who may still be in “part 1” of their journey? Again, thank you for sharing your story and I wish you the best with “part 3”!
    Kortney

    • Thanks Kortney for your important question. To my fellow travellers I would give the following advice. Learn as much as you can, so that you are prepared for what is happening in your body, what you can do to make your situation less a problem and know your rights. Also find people who understand and who can travel with you. In person, in chat groups, on social media. Don’t feel ashamed for something that is not your fault nor your choice, and don’t hide it. For why should you? If you go for therapy, do it for you, not for anyone else. Look up to the sky, aim for the stars and focus on what you are good at. Love yourself, as you are one living with yourself 24-7. Nobody is perfect and you accept others who aren’t, right? Use humor, although that is hard sometimes, but you might as well prepare for the first punch line yourself, before others do it. Stuttering sucks, life doesn’t.

      Keep talking!

      Anita

  11. Anita,

    Thank you for telling us your story! I can’t imagine having to work through the troubles that you have had to face over the years. Was there anything you heard, maybe another person who stutters’ story or quote, that particularly resonated with you when you were feeling down? Something that sticks in your mind to this day that gave you courage?

    Thanks,

    Luke Heckly
    Graduate Student
    Idaho State University
    Pocatello, ID

    • Thanks, Luke, for your interesting question. (And another male SLP! Yay!) where do I start… So many people have said so many things that made sense. Pws, slps, Dr. Phil, you name it. And I’m a big fan of quotes and have found a lot of them about fear and courage, loving yourself and feel pride. It can be a small plant breaking through the pavement. We can find wisdom everywhere around us. But we have to open our eyes and open our minds to really see the possibilities that ly ahead. And are willing to give it a try. My favorite quote I heard is “it’s ok I stutter, for what I say is worth repeating”. And my very own: “Sssure i ssstutter. What are you good at?” I have both as buttons, to open up the conversation and take away that question make on people’s foreheads when they hear me stutter. Perfect ice-breakers. 🙂

      Keep talking!

      Anita

  12. Hello Anita,

    Thank you for sharing the story of your inspiring journey with us, and also for giving your valuable perspective on using creative therapy techniques. My question for you relates to attitudes towards stuttering. As someone who grew up in the United Kingdom but have resided in the USA for the past few years, I tend to notice a great deal of cultural differences particularly relating to attitudes. With all the travelling you have undertaken over the years I’d be very interested to hear, from your personal experience, if there are any regions in particular you feel have made the greatest progress towards promotion of positive attitudes and acceptance of people who stutter amongst the general populous, and what factors would you attribute this to?

    With very best regards,

    Jane Bernert
    Idaho State University Graduate Student

    • Thanks Jane, for your kind words. It’s hard to answer your question though, as I have traveled a lot, but also during many years. And during these years, the situation is changing. Slowly, but still. Information is increasing, understanding is growing, people are uniting and speaking up. And that’s why I cannot really compare. Still there are regions where stuttering is a curse from God, been “treated” by eating crickets and not accepted in society. But there are also regions where stuttering is totally accepted, but… as such not being treated. It’s all about knowledge. That’s why it’s so important we all speak up and educate. PWS, SLPs, parents etc. I would recommend you to learn more about a project called IPATS and contact Kenneth St. Louis.

      Keep talking!

      Anita

      • Hello again Anita,

        Thank you for your reply, to be honest I wasn’t sure it would be a very straightforward question to answer, so I appreciate your input. It is certainly surprising to hear there are regions where stuttering is accepted yet untreated, very interesting! Thank you for the information on IPATS, I will look into the project.

        Best regards,

        Jane Bernert
        Idaho State University Graduate Student

        • Thanks for revisiting. Not many people do that, so I appreciate that. And the only question I don’t like, is a question not asked. 🙂 Asking questions will make you a great SLP.

          Keep talking

          Anita

  13. Anita,

    Thanks for sharing your story. It was truly powerful. As a graduate student and future speech-language pathologist, I enjoy reading stories such as yours. It is important for me, and others in the field to recognize that it is not always about finding the “cure,” but to help our clients learn to accept and embrace their role in whatever condition they are facing. Recognizing that we are all in control of our lives and our “conditions,” and choosing to be a voice rather than a statistic is so essential to helping ourselves and others in our journeys through life. Stories such as yours are simple reminds to guide not only therapy sessions but life in general, with acceptance and positivity.

    Thank you again,
    Alyssa

    • Thanks Alyssa for your observations. It’s true, there’s more than speech therapy to treat a PWS. Please check out my replies to Kelli and Rachel and others above, on how to add a different perspective to the therapy room. Yes, we all want fluency, more or less, but we all want to love ourselves and feel proud, PWS as well as non PWS. “Sssure I ssstutter. What are you good at?” 🙂

      Keep talking!

      Anita

  14. Anita,

    As a future speech language pathologist, I feel as though my primary focus has been on the act of stuttering and the emotions that surround that particular situation. Your personal story has opened my eyes to the reality that stuttering does not in fact exist in a vacuum as it may seem to in text books. It is essential that SLPs understand the true complexity of the life of someone who stutters and all of its “parts.” Your strength during part one and part two of your personal story is undoubtedly remarkable and is truly an inspiration.

    Thank you so much for sharing your story.
    Chelsey Marcelini

    • Thanks so much for your understanding, Chelsey. You’re so right stuttering should be seen in a larger perspective. We carry a huge luggage, not just because of our stutter, but also because of the cause and the reactions and results of our stutter. That’s why it’s so important with early intervention. The longer you wait, the more risk stuttering is “growing inside”. Finding ways to deal with stuttering, but also with the physical and mental parts, as well as meeting others in the same situation, is SO important!

      Keep talking

      Anita

  15. Hi Anita,

    Thank you for sharing your journey thus far! I am currently a second year graduate student pursuing a masters degree in Speech-Language Pathology. Your outlook on life is truly inspiring, and it is encouraging to hear how your stutter actually empowered you and led you to advocate for others who stutter. You wrote that when you discovered the stuttering community, you found your voice and were able to address the past and make plans for the future. My hope is to empower my clients to find their voice as well. Could you provide a specific example of how the stuttering community showed support and helped you accept your stutter (i.e. through listening or by sharing experiences)? Looking forward to your response!

    Thanks so much,
    Kerry

    • Thanks Kerry, for your interest. A typical example was when I went to my first national conference. I found people my age, who told jokes. Now when you stutter, jokes is a no-no. Because when you come to the funny ending, people already get it and laugh, stop listening och simply walk away. But here, they all waited, all laughed at the end and the jokes get worse and worse. :-)So what is so special about our self help group? Nothing really. We do what most other groups do. We mix interesting lectures with local and national speakers and speech training with different methods, with doing fun things together, such as bowling, go out and eat, see a movie, cycle ON the railroad with special bikes and picnic out in the open or go to the pool. Some of our members have special education or skills, which we gladly learn more about, such as massage, tai chi, flower arrangements, games etc. We also have meetings together with other local groups. Sometimes just over the day, sometimes weekend meetings or even longer.

      But, the most important reason why I go to my chapter meetings is that we do it together! When we buy a ticket to the movies, we all stutter. When we practice our speech, we all struggle. When we tell a joke, everyone listens until the other is finished. When I have a bad day, I write or call my stutter buddies, as they understand. When I find a job I write or call my stutter buddies and they cheer with me, as they understand. They taught me how to survive, how to get back on my feet again and how to become stronger and when I trip, they are there to break my fall. That’s what self help groups do. And that’s why I know I will always have friends.

      Keep talking

      Anita

  16. Anita,

    Your positive attitude and inner strength is inspiring. It was wonderful to read about how you used your painful experiences and struggles as stepping stones to become the person you are today. Was there a specific person, or message, or event that acted as a turning point for you? Also, how do you feel about fluency shaping and are there any techniques that you find helpful while speaking?

    Thank you,
    Zisel

    • Thanks, Zisel, for you kind words. My turning point was my first boss telling me I did a good job. At the age of 27 someone gave me a brochure about a self-help group for people who stutter. A what??? For who??? I sent on the form and got a phone call and was invited to a chapter meeting. It happened to be a spring meeting with a nature walk and a picture, which for me was the perfect start, as it all came so natural. And they all stuttered!!! Wow. . . From that day on my life changed. I now knew I was not the only one who stuttered, I was not a jerk, it was not my fault and I would give my life to spread this wonderful news to others. Needless to say I do voluntary work for the local chapter, the national association and even internationally(the experience to hear people stutter in all the world’s languages is indescribable!).

      To me, I needed to find myself, before I could benefit from speech therapy. I had learned some fluency shaping from a group of PWS who were speech training, but couldn’t use it. Until I had accepted myself and found my own space. Than I suddenly were able to understand and use fluency shaping techniques, combined with presentation techniques to become a better speaker. Combining voice, body language etc with Stutter Free Speech has been very helpful. I still stutter, some days more, some days less, but at least I now have tools to use in different situations, and the self esteem to choose to simply stutter and still feel good about myself.

      Keep talking

      Anita

  17. Anita-
    I did so enjoy reading your quotes and sayings! The “treatment” of stuttering has changed so much, I think in great part due to the influence of the internet and social groups that support PWS and their friends and families. When I was getting my undergrad in Communication Sciences and Disorders in 1995 there was little to no focus on treating the PWS as a whole person with fun and joy in their life. I am (very belatedly) now in graduate school and our professors have done us a great favor by encouraging us to explore the ISA website and “meet” PWS. Evidence based treatment is now much more focused on the needs of the PERSON who stutters as opposed to just changing the stutter. Thanks for enlightening us all.
    Christine

    • Thanks Christine for your observations. Yes, treatment has changed and not just that: pws have also found ways to help each other, both through gatherings and online, but also through group therapy, some even without a therapist, to help each other to keep on working on your speech. In Sweden, and I heard even in other countries, we have speech training through Skype and Google hangouts. not instead of therapy, but to help each other not to give up and to train more than once a week/month. Maybe something to think about for therapists as well, for people who live far from a therapist, people with other disabilities etc. The new media is extremely helpfull! There is so much of us attached to our stutter, so speech training, yes, but also relaxation, massage, NLP, Mindfulness etc, to give us a safety net when having a “bad day” and to make us continue to love ourselves and do the things we want to do, no matter if we are fluent or not. That’s why we’re no longer stutters, but people who stutter. 🙂

      Keep talking

      Anita

  18. Anita, I again have to thank you for your contribution. Thank you for being so open and honest about life. You have and you still are inspireing so many people, both worldwide, in Europe and in the Nordic countries…
    Best wishes from Hilda

    • Tack Hilda. 🙂 The only wish I have is to inspire people who stutter to speak for themselves. To tell people around us what it’s like to stutter, without feeling shame, tell teachers and employers about our needs, but also about the skills we have THANKS TO the fact we stutter, to find our inner strength to feel pride and live the life we want to. Because the fact that we speak in a different way, can just as well mean we’re a strong, cool bunch, interesting enough to get to know us. 🙂 Because who else would do something he/she is afraid of, every single moment of the day?

      Keep talking

      Anita

  19. Hi Anita — thank you so much for sharing your story — all aspects! I am the parent of a 17-year old who stutters, author of “Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter,” and author of “The Right Time to Break Out the Stickers” in this conference. Your story brings tears to my eyes, as well as your incredible accomplishments. Our son has been reluctant to connect with others who stutter. He has lots of friends including an adorable girlfriend and insists he doesn’t want to hang out with someone just because they stutter. I guess that’s fair, but I do think he would benefit from talking to others his age. We have attended conferences in the past (FRIENDS and NSA), but he still has little interest. Maybe someday… So while he pursues other interests, my life’s mission is to provide a parent’s perspective to the stuttering journey and hopefully bring about changes to how we treat children.

    Thanks again Anita — you tell your story beautifully and I know you have helped so many others!
    Best,
    Dori Lenz Holte

    • Thanks Dori, for your kind words. And also thanks for your devotion as a supportive parent to your son and for being active in getting the word out. I didn’t know there were other “idiots” (as I saw myself back then), until the age of 27. My life totally changed. (Even my husband says I’m no longer the women he married, but he loves me anyway. 🙂 ) From being quiet, I started talking, and never more shut up. From introvert, I’m now extrovert. My stutter changed from not being able to say my name and being called “fish” (as my mouth would open, but not a word came out), into being a public speaker with a highly social job and my stutter is not half the way it used to be. All thanks to the support I got from support groups, online and offline. Almost all my closest friends are within the stuttering world.

      But on the other hand, if your son feels good the way he does, has friends and a girlfriend and has the support from the people around him, that really makes me happy! I know others (mostly guys) who completely turned their back towards the stuttering world, simply because they don’t want to be defined as people who stutter, but as “Jim” and “Harry”. Which is fine, as long as they are happy with their lives and proud of who they are. Another guy, who is now completely fluent, told me he wouldn’t even tell his future wife and kids he stuttered, as that’s a door he forever closed. Which is a pity, because stuttering has been a mayor part of his life and because of that, he chose his path in life, his job and his future.

      So if your son is happy where he is now, that’s great. And if he wants to meet people who stutter, he knows where to find the support, thanks to you. And also thanks to you, other kids and parents have found and will find their way to the NSA and FRIENDS. I myself have been blessed to have been a part of the NSA conferences and my dream is to visit a FRIENDS convention, so I hug you for being the fantastic parents you are. I know, from our children and youth camps, this is not always the case. So your comments mean a lot to me.

      Keep talking!

      Anita

      • Thanks Anita for your wonderful reply! And I’m glad your husband stayed around — we wives are just full of surprises :-)!

        You are so right about Eli — he’s happy and connected. I too often second-guess myself. It was good to hear your take, I so appreciate it.

        And WOW!! You are such an inspiration, seriously! We have been to both NSA and Friends throughout the years and those support organizations provide a wonderful service to kids and families. Can’t say we always see eye-to-eye, as I’m on a mission to extract sm and fs from therapy for school-aged children who stutter. rebel rouser…
        But I’ve always had a good time and enjoyed meeting everyone. I’m planning on FRIENDS in July 2014. Can’t do NSA because my son is getting married that weekend…suppose I need to be there 🙂 Just kidding, I’m thrilled…

        Anyway, thank you so much and keep up your great work!! I have no doubt that you’ve helped so many by putting yourself out there — and never shutting up. Never ever shut up. As I say, let’s focus on keeping them talking!

        Best,
        Dori Lenz Holte

        • Thanks, Dori. I guess my husband is happy too he stayed around. 🙂
          We all wish the best for our children, but sometimes what we wish is different from what they wish, so just stay around and listen to his needs. If he doesn’t have needs, just smile and watch him live life to the fullest. 🙂

          I so love to work at children and youth camps. To see them grow, to make them think and see the change on their faces, from shy and scared, to outgoing and wanting to change the world. There’s nothing like it! Therepy is important, but we also need to give them the tools to cope with life itself. And to be proud of who we are and what we accomplish. Every day!

          I guess you’ll have enough to do preparing for the wedding. Congrats and may their love lasts a lifetime and more.

          And don’t forget to celebrate today. Let’s use this day to educate and spoil ourselves. 🙂 The media loves us. let’s use them!
          http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

          Keep talking!

          Anita

  20. Hi Anita,

    I wanted to thank you for sharing this inspiring personal story. The way that you paralleled your experience with stuttering to your life’s “second part” was enlightening. It can be applied to so many parts of people’s lives (not just stuttering or even medically related). You admitted how hard life was for you and I appreciate how open and honest you were about your experiences and feelings. I can see how you grew and learned from your stuttering and it’s a lesson to others who are suffering. There is hope and there are resources out there, and I think everyone should remember this. Your story gives hope and I can see how your part one gave you hope and prepared you for your part two. You were able to turn your negatives into positives and learn later.

    I wanted to ask you if there is one part of your life that you find you have learned the most from? Was it your stuttering journey that turned your life around? Also, how is everything now? Was there a point that you felt you were finally content? Or do you feel that you are still learning and coping?

    Thank you again,
    Eva C.

    • Thanks Eva, for your insightful comments. I found the stuttering community at the age of 27. Before that, I thought I was the only “idiot” (as I saw myself back then) in the world. When I first met other people who stuttered, in person and online, I learned most of them have a partner, a family, a job and a great life and dreams they were persueing. That made me come out and see myself as a whole person. I was ok. I just stuttered. From that insight I became angry at people who told me I couldn’t. Couldn’t get a partner, a job, a life, a future. So I decided to speak up and never hold my peace. I have been travelling the world since that. Spoke to pre-schoolers, teachers, government, even the EU, the media and people who stutter. I changed from being introvert and hiding, to an international public speaker, telling people that stuttering is ok, but that we too need the attention and the help we rightfully should get (school, job, technical aids etc, ut most of all understanding and respect). So yes, meeting others who stutter, realizing I was ok, completely changed my life.

      Today I am content with my life. I have a loving husband, a grown-up daughter with a loving boyfriend, and a stepfamily I love. I also have a highly outgoing job and am a stuttering conference junkie :-). I was told not to learn languages as “I wouldn’t go anywhere anyway”, while today I’m travelling the world, being a speaker, THANKS to my stutter. I was the keynote speaker at the world congress in my birth country, which closed a circle, and recently spoke at my father’s funeral, also there a circle closed. So yes, this year has been a very special year to me and I am content with my life and me as a person. But learning and coping? I have my bad days of stuttering where techniques won’t take me anywhere, am still very sensitive to some comments that bring me down again, still feel the need to do more, be better, struggling for acceptance and approval. I think I will feel that for the rest of my life, as my life’s start has been such a tough one. but on the other hand, I see it as a challenge and I try to share my walk of life with others who still are trying to climb that mountain, to show them it is possible, if you only believe in yourself.

      Now that was a long reply to a short questions. 🙂

      Keep talking

      Anita

  21. Anita-

    Wow! Your story is amazing! I am currently a graduate student in Communication Sciences and Disorders and we are constantly urged to connect theories and experiences from our studies to other aspects of our education. The way you paralleled your experiences with stuttering to the “second part” of your life was incredible. I feel that many lessons you have learned throughout your journey can be directly related to aspects in my life.

    I was wondering what was the most powerful and significant thing you learned during your therapy for stuttering, and how you were able to related it to your journey of coping with ME? Is there something you learned when coping with ME that in retrospect, could be directly related to your stuttering therapy?

    This paper is truly inspiration, thank you so much for sharing!

    Erin Greger
    Graduate Student
    Communication Science and Disorders
    Western Carolina University

    • Thanks Erin, for you comments and your interesting question. Yes, we learn lessons every moment of the day and as long as we allow ourselves to experience them, we learn so much. From life, from others and from ourselves.

      I have been unlucky with speech therapists (won’t go into that here) but when I found the stuttering community, I also learned from a group of people who stutter, who practice themselves, using a mix of stutter free speech and public speaking. I learned so much from that, but somehow couldn’t use the skills in real life. I was working hard to find myself and there was no space for, as I felt back then, “changing my personality” through speech training. Life has been very tough on me and I needed time to heal and thanks to the stuttering community, I did. Than I needed time to become stronger and fight my ghosts from the past. That resulted in a job as a teacher and a lot of public speaking, not only about stuttering. And NOW I got it! I finally understood that what I learned in this group, I could use in real life. It was like maths. You need to understand how to use it, before it makes sense.

      With ME I’m still struggling. I learned how to deal with it (slowing down my pace and medical treatment), but I’m not really ready. I’m not ready to adjust my life just yet, although I know it will help me tremendously if I practice what I’ve learned, but it takes time to accept it and to “change my personality” from being “all over the place”, to “pacing”. But again, with the help from people who’ve been-there-done-that, I will again learn to deal with it.

      What I’m trying to say it, that sometimes it might seem hopeless, being an SLP. The client is learning, but not practicing it. But it might do still go down, it might just be that the client is not ready just yet. Combining one on one therapy with group therapy might help.

      Your question show you’re going to be a great SLP!

      keep talking

      Anita

  22. Anita,
    As you have heard from many of your previous followers, your story is truly inspiring. I have been blessed not to have such hardships in my life, but based on your encouraging advice I will be prepared should life throw me a curve ball. I am a graduate student studying Communicative Disorders, and hope to be someone’s support system in areas such as stuttering, among other speech-language disorders. From reading your story, and others in the ISAD conference, I understand how important it is to not only be the speech therapist, but to be an overall “listener” for my future clients. You commented that support groups have helped you deal with your past and allowed you to go “back to the future”; do you think you would have benefited from being a part of support groups with peers who were going through other speech disorders as well? I ask this because, in my future as an SLP, I think a support group would be a great opportunity but don’t know if I would have enough clients on a caseload with similar situations. In your opinion, would being in a group with peers who have speech disorders, in general, be beneficial for the coping process?

    Thank you for sharing!
    Chelsea Nigbur

    • Thanks Chelsea, for your willingness to learn from all of us presenters. This is the perfect place to ask questions you wouldn’t ask your clients. 🙂

      Yes, I think it would be helpful to meet others, especially if we have things in common such as speech problems, age, etc. Than you can discuss issues like school, dating, work, hidden disabilities etc, things we all would have in common. I did find that it’s hard to get understanding from people with other disabilities such as wheelchair users, people with sight problems etc, as than you suddenly get a “fight” about which disability is “worse”, so it should have things in common. Another strength of the stuttering community is the mix of ages. When children hear me stutter, they are surprised and happy, as most of us have great lives no matter what. When young adults who stutter meet older PWS, they get tools to cope and hope for the future. So yes, great idea! Be flexible and think outside the box. And don’t forget to ask the client what he/she wants. 🙂

      Keep talking

      Anita

  23. Anita,

    Let me first say your title attracted me immediately to your story because I am in love with the Back to the Future series. Your unique story has not only touched me but made me feel more compassion for those who do stutter. I was happy to read that throughout your journey you had many ups and triumphs that have outweighed the bad in your life. You are truly an inspiration to not only the stuttering population but to people in general! As a current graduate student in the field of Communication Sciences and Disorders I now have a bigger view of the overall picture of stuttering throughout someone’s lifetime.

    Thank you for sharing your story,

    Corinne Williams
    Graduate Student
    Communication Sciences and Disorders
    Illinois State University

    • Thanks for your comments, Corinne. In many support groups, online and in person, people ask “What would life be if I wouldn’t stutter”. There is no answer to that, as we cannot relive our lives or the situations we’ve been in, to be able to compare. Just as in the movie, if one thing would have changed, the following life will change with it. But what we can do is to teach the young ones about what we would have done differently if we knew than what we know now. That everything in our lives, the good and the bad, made us into the people we are today and colored our lives. I have a friend who no longer stutters and who refuses to look back, or even mention his stutter to his future wife and children. That’s a pity, as his stuttering youth turned him into the adult he is today. Our past is our future. And if we close our eyes to our past, NLP treatment might be the tool to go back to our past and to change our future. Back to the future. 🙂

      Keep talking

      Anita

  24. This was a very interesting and motivating paper for individuals learning about stuttering and living with stuttering. Your story about being a fun and enthusiastic young girl turning into someone that became and outcast makes this story so relatable for people that I have met that stutter. It also shows how tough it would be to be a person who does not stutter to end up becoming a person who stutters at the age of nine. You overcoming your negative feelings about stuttering and turning those feelings into something productive is so strong and inspirational. What advice do you have for teenagers in high school that stutter? How do you think they can take life by the horns and take control of their life?

    • Thanks for your comments (don’t now your name). yes, it was tough to suddenly stutter and through the people reactions to my stutter, turning into an introvert person, after having been extrovert. Like being inside a bubble. So happy I’m out there again. And there’s no way to shut me up anymore. 🙂

      My advice to teens and young adults is: stuttering sucks, life doesn’t. You are not a stutterer. You are a person, with a personality, skills and a lot to be proud of, who just happens to stutter. It’s not your fault you stutter, so why feel ashamed? Why let people tell you to stop stuttering and go to therapy? Would they tell a person in a wheel chair to simply get up and run? Yes, therapy is a great tool, but you have to do it for YOU, not to please others. Focus on the whole you, show people who you are and work on the the things you’re good at. If you show you’re pride of you and that stuttering is simply something that’s in your luggage, people will see you as you are and take your stutter as a part of you. Go for your goals. Sure, it might be tough with stuttering and all, but who says you can’t? We just need to fight harder. Just because we do something different, that doesn’t mean what we’re doing is wrong. It might be something cool, as we’re facing tough situations during all of our waking hours, but we still do it! We kick *ss! 🙂 Find ways of replying to stupid and hurtful comments, by practicing what to say in advance. Be first commenting on your stutter, because as soon as people understand, they will loose interest and find it normal. Use it for oral presentation in class. (You’re the expert, right?) Use it at a job interview, as stuttering has made you stronger, more determined. There will always be people who don’t get it, so be prepared. I wear two buttons saying “It’s ok I stutter, for what I have to say is worth repeating” and “Sssure I ssstutter. What are you good at?” Takes the pressure off of me when having a block, makes people understand and is opening up for a conversation. But most of all, be proud of who you are. Someone once told me: people get what they can carry. And what I got to carry, shows I must be a h*ll of a strong person. 🙂

      Keep talking

      Anita

  25. Hi Anita!
    Thank you for sharing your story! You have a very amazing and inspiring story! It is so empowering to read about how you dealt with your stuttering and grew throughout your experience and acceptance. Your story is very inspiring to all individuals going through a rough time, particularly fellow individuals who deal with their stuttering every single day. I am a graduate student currently studying to be a speech-language pathologist. I was wondering if you had any general advice for working with individuals who stutter and helping them accept their stutter? We have been discussing in class that you can do this by talking to individuals about their feelings concerning their stuttering (both good and bad). Do you think this is something that is helpful in the acceptance process? What aspects of your support groups did you find most helpful that might be incorporated into any therapy approach?

    Thank you so much for sharing your story!
    Brittni

    • Thanks Brittni, for your kind words. Accepting stuttering is hard, as stuttering is still in the shade, with so many people being ashamed. And why? What is so wrong about stuttering? We can talk, it just takes longer time to get the word out. And maybe that’s the key point: stuttering is so dramatized, so combined with old sayings there’s something mentally wrong with us, and the media showing pws as being funny, nervous of even violent! That’s why we need to speak up and come out, so that people understand we’re just like anyone else, but with some extra luggage. Just as intelligent, just as extrovert, just as much fun as others. But how would people know how to react and deal with our stutter, if we don’t tell them? DO read my reply to the person above, PKLTbuds4.

      Important for SLPs is to not give assignments you yourself wouldn’t do. If you would have had your breast removed, would you tell people? I guess that depends on the person you are and the people you talk to. So individualize therapy. What works for one, might not work for another. We are different personalities, with different experiences. You’re like a personal trainer, so the more ways of training you can offer, the better the result will be.

      The strength of the stuttering community is the understanding. You can talk about stuttering for days, or not talk about it at all, they will understand. And you can find people who’ve been-there-done-that, from who you can learn a lot. You can also bring your family and friends to conferences and meetings. And that’s something I would like to see in therapy as well, to bring your support group (family member, friend, peer stutterer) to the therapy room and to (also) have group sessions. It’s so tremendously important to feel you’re not alone, that there are people who understand! Stuttering is one of few disabilities that change all the time. When you’re deaf, you’re deaf. When you’re blind, you’re blind. But stuttering differs, all the time. You can never prepare. It changes from the person I meet to another, with my health, with the weather etc. So when speech therapy works one week and not the other, it’s not a fallback, it’s simply another day. But most of all, that there is life with stuttering as well. That speech therapy is an important tool, not with the goal to become 100% fluent, but to be able to communicate in a way that’s understandable and acceptable, while acceptance (and the stuttering community) is important to help you to cope with life itself.

      Keep talking

      Anita

  26. Anita,

    Your story is truly inspiring to others. As a future speech-language pathologist, it’s very important to gain a perspective on how individuals who stutter deal with their situation. A support group is a wonderful opportunity to discuss and get advice from others that are experiencing similar situations. Do you think a face-to-face support group is more beneficial in the beginning than a support group online? Also, what is the number one thing you suggest to a future SLP working with individuals (adults and children) who stutter?

    Thanks,

    Jamie S.

    • Thanks Jamie, for your kind comment.

      I absolutely applaud therapists using different kinds of therapies, such as face-to-face, group therapy, bringing friends, family and peers into the session room and offering different kind of additional therapies, such as NLP, KBT, yoga, massage, singing, presentation techniques etc. Whether face-to-face is more beneficial in the beginning than a support group online, depends on the client. What kind of person is he(she). What are his experiences with self help groups or the social media. Maybe even both, to have him meet others both in person and online? Some people would directly go to a support group after removing a breast, some people won’t tell anyone for years after the operation.

      That brings me to your second question. Be flexible. Don’t just learn about the client’s speech, but also learn about the client. Who is he, what is his background, experiences, skills. Don’t just go by the book, but use your common sense, that little voice inside, that gut feeling. And learn about different methods and try different angles. Stuttering is so much more than a speech problem. If you’re interested in people, you’ll find pws to be the most intriguing and lovable clients. 🙂

      Please read my comment to Brittni above and to other SLPs earlier in this thread.

      Keep talking

      Anita

  27. Hi Anita,

    Thank you for sharing your paper! I love the honest and raw depiction of your life. I enjoyed reading about your struggles and how you were able to overcome them time and time again. You are truly a strong woman! You mentioned a few times that you were “faking it.” Could you please elaborate so that I have a better understanding.

    Vickie Woodall, Graduate Student
    California State University, Fullerton

    • Thanks Vickie, for your comments. Yes, it was a tough struggle, but we get what we can carry, so I must be a very strong woman. 🙂

      I was told I was stuttering (and pretending pain and tiredness etc) to get attention. To simply “get a grip”, kick myself in the butt. If I would go to therapy or support groups and didn’t stop stuttering, it was my fault. (TV shows where people stop stuttering after just one weekend, or by simply using a device, aren’t very helpfull…) If I stuttered less one day, or was angry, talking to animals, or was singing, see, I was faking it.

      Later on, when I gave presentations that were kinda fearful, I was so scared, I didn’t stutter, f ex in front of the EU parliament. That was a problem, as I was making a point on stuttering. So this time I DID have to fake my stutter to get my message through. 🙂

      It’s also a problem when I’m giving a presentation while reading, as than I hardly stutter. So in the beginning, I only read my papers, but that gave the wrong message, talking about stuttering but being fluent (during reading at least…) so I try more and more to just use notes and talk around it, to turn back into my stuttering self. 🙂

      Hope I made myself clear. If not, please let me know.

      keep talking

      Anita

      • Anita,

        Thank you for clarifying that and explaining it with great detail. This is an issue I never really thought about. I’m guessing it’s something a lot of PWS have to face on a daily basis. I’m sure it’s already too much to have to deal with the struggles that come with being a PWS, but having to worry when is a good/bad time to stutter should not be added on to the list.

        As a future SLP, I was wondering if there is anything we can do to help with this issue. Is that anything that could be addressed in therapy to maybe help with the feeling of having to “fake it?”

        Vickie

        • Thanks for coming back, Vickie.

          This is a huge problem for covert PWS who want to “come out” and tell others they stutter. They are not being taken seriously. “They don’t stutter. They are fake.” But their struggle is so much harder, to never show, to always protect it from coming out, while denying their own personalities, denying their stuttered words to come out.

          Some therapists want us to do voluntary stuttering. For some people, especially cover pws, that’s a way to “come out”. Also for other pws it’s a way to accept stuttering. Others, like me, hate it. I already stutter, why also fake it? So again, try to have an open mind and try to find out what your client’s stuttering and personality is all about and what is helpful or not.

          The basic thought is to help the pws to be him/herself. As a stutterer, as a person. So we don’t have to fake to stutter, and not have to fake not to stutter. Noone wants to fake something that is such a struggle, other than people who like to make fun of us. So prepare them by giving them a liner such as “You can’t imitate me / I don’t fake it. I’ve been doing this for so many years, I’m an expert.” 🙂

          Happy ISAD!

          Anita
          http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  28. Anita,

    Like everyone else, I am so glad you shared your story with us! You were so honest and straightforward with your struggles and that is so inspiring to read about. I, too, am a graduate student, and am in the beginning stages of evaluating a school-aged child to determine eligibility for services. The child does stutter, though that is not the reason for referral. The parents, however, are very concerned about it. From the perspective of a parent, as well as a person who stutters, what could be said to parents to help them put their child’s stuttering into perspective?

    Thanks!

    • Thanks, Jessica, for your kind words and for sharing your case with me.

      You touch something that is very important. Sometimes you need to reach out to the parents instead/before the child who stutters. A child who sees a parent worrying, might think he/she’s doing something “wrong”. And as a child wants to please the parents, it’s learning to hide or change the behavior. The parents know the problems that can arise for the child and are worried. Of course. But my father taught us a valuable lesson: don’t be scared, be careful. So tell the parents what stuttering is about and help them to explain it to others, not blame themselves and not feel ashamed and hide the child. Give them tools to help the parents create a friendly environment for the child and help give the child a positive self esteem. Remind them their child isn’t a stutterer, but a child with so many skills and such a personality, who just happens to stutter. Show them where the self-help groups are so they can meet other parents to children who stutter, while the child can meet other children who stutter. Also for them to meet adults who stutter, so that they can see life can be tough, but not hopeless.

      Your question shows you really care and see the problem. That makes you a good SLP. Thanks.

      Keep talking

      Anita

  29. Hi, Anita!

    WOW! Thank you so much or sharing your story! I am currently a graduate student in North Carolina pursuing a career in Speech/Language Pathology, and I am very interested in working with Non-Native English Speaking clients and those of Culturally and Linguistically Diverse backgrounds. I am SO inspired by how far you have come after being discouraged from learning any languages. I was wondering if there is any advice you can give me or that you think is important for working with and encouraging clients (specifically clients who stutter)who are trying to learn a new language?

    Again, thank you!

    • Thanks (don’t know your name) for your kind words.

      Stuttering is so diverse. Some people who stutter stutter less when speaking another language or a dialect, others stutter more. I stutter less in English, more in German. Maybe because I have to think more about the grammar, who knows… I myself stutter less on stage, with a microphone, playing a role. There is a Swedish guy who stuttered as a child and learned to use different voices to get through school. He is now the most famous voice imitator in the country. 🙂 So my advice would be to try and work with the specific sounds every language has, and maybe work with a change of voice, articulation, theatre practice, public speaking, to promote a different way of speaking while using voice and body.

      Good luck and happy ISAD!
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

      Anita

  30. Hi Anita!

    Thank you so much for sharing your story! I always find it interesting to hear about the trials and triumphs that everyone faces. Your story was very inspiring. Throughout your story, it seemed like each time you were able to stop “hiding” and begin talking about what was occurring in your life, you were able to face your fears and become more accepting of what was going on. Did you also find that the more open you were about talking about these things the more accepting others were as well, such as your family?

    Thank you!

    • Thanks Shauni (?) for observing my key point here. Once I stopped hiding, I could finally release all my emotions. I learned to finnaly express my anger, relief, happyness, fun, and later on, pride! Fighting my demons, doing all the things I was afraid of and held me back, getting rid of my shame, helped me to once again become the person I am, and to show that person to everyone. I went back to school. I started speaking in public, not just about stuttering, started to open up in the media, started to speak to decision makers. Spoke to pre-school children, teachers, politicians and to pws from all over the world. This opened up my Pandora box, as I had hidden so many things, even to myself. But This also made me realized how far I’ve come, and I could feel pride and persistance to never hold back anymore. This helped me to chose the job I wanted, instead of holding back because of my stutter and finally, all of this helped me to turn my very severe stutter from being a monster that totally blocked my speech, into a mild to moderate stutterer. it also helped me to talk to my family about my youth, something I couldn’t bedore, as stuttering was such a taboo, and we finally found each other again. I was a keynote speaker at the world congress in Holland earlier this year, and had the speech of my life talking at my father’s funeral this autumn. Two circles closed. What a year…

      Keep talking and happy ISAD!

      Anita
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  31. Hi Anita!

    Great Scott! 🙂 I love that you related your journey to the Back to the Future series, 1) because I love all three of those movies and 2) it gave me a new way to look at how people who stutter can view life. Not only people who stutter but anyone who is facing adversity. I am a student in the speech pathology field and it’s always nice to read and learn different ways people cope with adversity because it may help me understand better as well as retell and share those same stories with some of my future clients, hoping that your story and the others I read, can apply to their journey. It’s just like you said at the end about the butterflies, people need to know they are not alone because the support of others is really powerful.

    Thank you for sharing your story!

    Kelsey Williams
    SLP Graduate Student

    • Thanks for your comments, Kelsey. In many support groups, online and in person, people ask “What would life be if I wouldn’t stutter”. There is no answer to that, as we cannot relive our lives or the situations we’ve been in, to be able to compare. Just as in the movie, if one thing would have changed, the following life will change with it. But what we can do is to teach the young ones about what we would have done differently if we knew than what we know now. That everything in our lives, the good and the bad, made us into the people we are today and colored our lives. I have a friend who no longer stutters and who refuses to look back, or even mention his stutter to his future wife and children. That’s a pity, as his stuttering youth turned him into the adult he is today. Our past is our future. And if we close our eyes to our past, NLP treatment might be the tool to go back to our past and to change our future. Back to the future.

      Keep talking and happy ISAD!

      Anita
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  32. Hello Anita,

    Thank you for sharing your candid experiences as a woman who stutters. I am moved by your story, and I loved your quote “away with shame, forward with pride!”… It is a great way to sum up embracing an issue such as stuttering. I feel as though takes a lot to simply own up to difficulties with oneself, let alone the word wide web. I know that I, as well as many others, have learned through your story, and your life will continue to inspire others. Thank you.

    I just read Pamela Mertz paper “What Women Who Stutter Want to Talk About”, and learned about the power of vocalizing emotional obstacles with other people who share similar experiences. This article explained the benefits of groups of women who stutter having the opportunity to talk about topics such as “esteem, confidence, socializing and dating, vulnerability, parenting and work.” You have explained how that through the use of the internet, self-help groups, personal stories, and research, you have been able to seek out opportunities to grow. I would like to know if you’ve ever been a part of a group with women exclusively, discussing stuttering-related emotional issues? What types of supports have you found the most beneficial to you?

    Thank you so much!

    Kaylen Alford
    SLP Graduate Student
    Appalachian State University

    • Thanks Kaylen, for your insightful comments. Pam and I share many experiences. We both had a troublesome youth where stuttering played a big part, and we both came out of it, stronger than before. Pam has a fantastic podcast, in which she interviewed me as well.
      http://stutterrockstar.com/2010/07/01/proud-of-me-finally-episode-11/
      She also introduced me to the women workshop when I was at an NSA conference, and I’m proud to have been a co-host for a women workshop at the world congress in Holland earlier this year, together with Christine Menzies and Pam (who was with us through Skype). As there are four times more men who stutter, it’s good to discuss private matters that are just for us. All from stuttering and menstruation, relationships, male bosses etc. I am a leader of a European youth meeting and i try to support many girls both during and afterwards, to find their way through life, with stuttering and all. And I think that has been the most benificial part of my life: to share. To learn from each other, to support each other, to look up and to lift up each other. Stuttering is a tough job and most of the day we have to face it alone. So to have people to share your journey (and even your therapy!) with, is so helpful. We also have a group of PWS who do speech training through Skype. It’s a great addition to other speech training, as we support and understand each other. We work with a combination of SFS and public speaking, to me the perfect match. 🙂

      Keep talking and happy ISAD!
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  33. Hi Anita, thank you for your generosity in sharing your heartfelt story; you have been similarly generous with the energy you have put into responding to everyone’s comments and questions this month! As a graduate student, aspiring SLP and current SLP Aide, I have found your piece to be particularly insightful. It has provided a valuable reminder that although we may go into this field motivated by a desire to “fix” people’s problems, treating our clients may be more about addressing some of the less obvious symptoms of their disfluency and helping them accept who they are. I am so glad to hear the positive role support within the stuttering community and various self-help groups has had on your life. Your powerful sense of self makes me want to go and find my own self-help group of some sort. Thanks again.
    Natalie Volcko
    Idaho State University Graduate Student

    • Thanks so much for not only your comments, Natalie, but also for your time to read my previous replies! Most students don’t even return or comment to a reply. That, to me, shows you are a devoted SLP-to-be and I envy your future clients!

      Sure, we too want to be “fixed”, but as nothing is forever, it’s important to ALSO have a backup. To find courage and strength from within, when therapy and friends are not always around. You can crop a tree to make it carry more fruit next time, or make the most beautiful bonzai tree, but when the roots aren’t strong enough or when it’s not watered, it will eventually die. So we need the whole package: speech training, additional help (relaxation, social therapy) and also what we call our “stamily”. These will nourish, crop, push and pull us to strong oaks, who will stand tall in any weather and will give shelter to those who seek so.

      Keep talking and happy ISAD!
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  34. Thank you for sharing your amazing story! I believe hearing stories from PWS encourages other PWS to overcome and face their fears. A SLP cannot just simply “fix” a PWS. Reading and hearing stories from individuals is a good technique to help others.
    Thank you!
    Jamie Heiberger
    Idaho State University Graduate Student

    • Thanks Jamie, for your insight. You’re so right, we all need people like us. If it’s people who stutter, parents to children who stutter, but also other people with the same disabilities, problems, lifestyles, jobs etc. We can both help and heal each other. But we have to start talking. Start telling people we need help and start telling people we can help. So don’t hesitate to come and visit self-help groups, in person and online, start group therapy and bring friends and family into the therapy room.

      Keep talking and happy ISAD!
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  35. Hi Anita!

    Thank you for your awesome story and sharing with everyone your amazing attitude about your stutter and life in general! I couldn’t imagine going through the things you went through and still maintain such a positive and optimistic attitude in the end. Hearing your stories and others like it truly inspire me in my day to day life. Thank you for your courage and for sharing that courage with others.

    -Christian Keil
    Idaho State University Graduate Student

    • Thanks for your uplifting comments, Christian. I love Americans say aaawesome. :-)It’s positiveness that keeps people going. People who stutter, people in pain, relatives etc. If we give up, we might as well start digging first. But we need to look up, focus on the things we CAN do. A rope dancer is never looking down or backwards. He’s always looking forward. And you as a student can be that teacher to help us get to the other side. Quite a challenge, right! 🙂

      Keep talking and happy ISAD!
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  36. Thank you for sharing your story Anita. As a graduate student in Communication Disorders it is so helpful the hear the stories of people who stutter. I think it gives future clinicians such an insight and advantage to have so many different perspectives so we can share and encourage clients.

  37. Hi Anita,
    Thank you for sharing your story! It takes me back to that old saying that addresses how we should treat everyone with kindness, because we never know the struggles they may be going through. It’s sounds like you were a composed woman and mother who successfully hid your pain for many years. I find myself burying complications in my life only to find them still there, unaddressed. While my story is much different than yours, I can truly appreciate the accomplishment you have overcome in delivering yourself from this stronghold of stuttering. Your daughter must be so proud of you! I appreciate your positive view and determination to accomplish great things with your life. You are an inspiration!

    Marika R
    ISU SLP Graduate Student

    • Thanks so much, Marika, not only for your reply, but also for your personal touch. The words “Don’t judge me until you’ve walked a mile in my shoes” is so true! There is often a hidden reason why we are and act as we do. The story you read is not even the top of the iceberg. The bullying, the sexual and mental abuse by people close to you… There will be a book one day including al this. But also including so many happy moments. moments of love and pride, over others and over myself. Like this very year, while walking the unknown road to learn about my disease, I also was a keynote speaker at the world congress in Holland earlier this year, and had the speech of my life talking at my father’s funeral this autumn. Two circles closed. But you have to start somewhere. When I found out there were others, all my cropped up emotions came out, which helped me to make the first step to make a change and to finally close the wounds. there are still scars, but they remind me of my journey. My final words, Keep talking, are there for a reason. Don’t keep those wounds open, Marika. The only one who’s left with the pain is you. Do contact me offline if you want. scatsis@gmail.com

      Wishing you rays of sun and someone by your side to help you adress whatever is making you heart heavy.

      Keep talking and happy ISAD

      Anita
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/
      (Translation: Stuttering made her want to kill herself)

  38. Hello Anita-

    Thank you so much for putting together this well-thought out piece. You are a very resilient person to have gone through this much and still come out on top. This piece was very inspiring and it sounds like you have reached many individuals in your travels. You must give many others hope when they hear of your story. Again thank you for posting.

    Sincerely,
    Sarah Schrupp

    University of Wisconsin-Stevens Point Graduate Student

    • Thanks for your comments, Sarah. Yes, life has ups and downs, but as long as you can focus on what you CAN do, there is a way of living with whatever is making your trail a heavy one. Every stepback can be turned into a new challenge, every victory into a new goal. Life does suck sometimes, and I’m the first one to moan 🙂 but knowing what I’ve already been through, makes it easier to get up again. But the most rewarding thing is to walk my path with others by my side. So do come and visit the self-help group near you. It’ll be worth it. 🙂

      Keep talking and happy ISAD!

      Anita
      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  39. Anita,
    Great article! I am a huge Back to the Future fan, so was instantly attracted to you article. Thank you for sharing your story about your own, personal, real experience with stuttering. It is encouraging to hear how your experience with stuttering, even though it was so difficult, prepared you for another struggle to come, and because of that difficult time, you were better equipped to cope with your new struggle. It is encouraging to think that though the troubles in your present days may be so great, it may be preparing you to be able to overcome a future struggle. I take great comfort in that idea.
    I thank you for voicing the notion of not needing to suffer alone, and that one should seek out support, “shake off the shame stamp”, and not longer be silent about our struggles, in an attempt to find the support that we may need. I hope that you will continue to encourage many more through your work and your inspirational story!

    • Thanks so much (don’t know your name) for your uplifting comments! Life itself is so much easier with people by our side, no matter if there’s sun or dark clouds, not matter for what reason. Sharing sorrow dimidiates it, sharing joy doubles it. But that means we have to open up. Those who need help, should speak up. Those who can carry someone else’s weight, should also speak up. We’re all good at something, all strong in our different ways. Sharing strength and weaknesses makes us a great team. 🙂

      Keep talking and happy ISAD!

      Anita

      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  40. Anita,

    Thank you so much for sharing your story. Trying to support a person who stutters is somewhat intimidating to me as a young clinician due to the fact that I age never experienced what it is like to live with a stutter. I love your idea of attending stuttering support groups and just meeting and talking to people who stutter. I think getting to know someone can provide confidence even if I will never have my own experience with stuttering. I am excited to get to know other people who stutter, hear their stories, and relate as much as I can to living with a stutter.

    Thanks for your encouragement to aspiring clinicians.

    Haley Lounsbury
    Idaho State University Graduate Student

    • Thanks Haley, for wanting to be a part of our lives! We highly appreciate people’s effort to not just learn from books, but to really get to know us. Our challenges, our fears, our conquers. It’s hard for a person to understand what’s going on in our bodies and minds, while at the same time there is still so little known about stuttering, so i understand why many therapists are not so keen on treating us or even wanting to get to know mote. That’s why I appreciate all of you students visiting the conference. Your interest shows you’re going to be a great therapist and I envy your clients!

      Keep talking and happy ISAD!

      Anita

      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  41. Hi Anita!

    What an interesting paper! Thank you so much for sharing your story. As a current SLP graduate student, I found your story inspiring and enlightening! I am so fascinated with the fact that your experience with stuttering helped you to overcome other obstacles in your life. In that aspect,you are such a wonderful role model for not only people who stutter, but also their clinicians. What you shared with us is such a wonderful life lesson for everyone! Learn from the past and use it to help overcome your current obstacles. Your story motivates me to equip children (and adults) who stutter with skills that will not only help them with their stuttering, but also prepare them for life after therapy. I think being involved in organizations or support groups is important for anyone going through a hard time in their life and I firmly believe it truly helps an individual cope better than therapy with someone who isn’t in their shoes ever could. Thank you again for sharing your story!

    Megan Hester

    • Thanks, Megan, for your insightful reply. You are so right, fighting one problem can equip you to fight other problems, no matter whether it’s about stuttering or other matters. So, also the other way around is helpful to take a look at. If you have managed to fight against other problems, realizing that might help you to deal and live with stuttering. Fighting my fear for certain situations concerning stuttering, by doing the things I was afraid of, helped me to cure my dentist anxiety! 🙂 So yes, have an open mind, don’t just see and treat stuttering as being something only vocal, but use life as a tool as well. Helping people who stutter is tough, but giving a person life tools as well as fluency tools, can do the trick. 🙂

      Keep talking and happy ISAD!

      Anita

      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/

  42. Anita,
    Thank you for sharing your personal story and for your dedication to advocating for others. I love seeing that when someone is faced with a struggle in their own life, they are forced to advocate for themselves, but choose to advocate for others. I am not a PWS, but as an SLP graduate student it helps me to better understand those who stutter a little better by reading your personal stories. I understand that each PWS is very unique but you also share things in common that are important to collaborate on. Technology, the internet, and social medias are an amazing way to build this communication with other PWS as well as to educate others. I, like many others, appreciate you sharing and I hope it can help me in serving PWS in my profession. Thank you,

    Christy Baltazor
    Idaho State University, Graduate Student

    • Thanks Christy, for your comment that made me think myself.
      We are not forced to advocate for ourselves, which, in a way, is a pity, as so few do it for us… I wish we would advocate for ourselves as much as we advocate for others! How many would put something on their facebook wall about breast cancer, which most of the people posting don’t have, and how many pws, slps, friends and family will post something about stuttering, even if they stutter or have a relation to someone who stutters? That’s why we have the ISAD. To make stuttering normal. Or why not even tough or sexy? 🙂 We meet hurdels every moment of the day, and still we keep on going, running, jumping, pushing to make our way through the day. Instead of taking away the hurdles. Or have friends and family help us taking away the hurdles. The internet and social media are such amazing tools, where we all can hold hands and advocate, support, like and share. Please help us to not only get speaking tools, but also the support, pride and social skills to make us the strong and proud people we are deep inside.

      Keep talking and happy ISAD!

      Anita

      http://www.expressen.se/halsa/stamningen-gjorde-att-hon-ville-ta-sitt-eget-liv/