Suitcase + Addiction = World Congress

Anita 50About 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, board member, 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 keynote 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@gmail.com

Suitcase

My life has been a journey. I was born in a big city in the Netherlands. When I was nine years old, we moved to a small village near the German border, where my stutter suddenly appeared. In previous ISAD online conferences I told you about my challenged youth, with heavy bullying from teachers and classmates, the abuse from therapists and about me trying to “check out” on life, so if you want to know more about that journey, do take a read through past online conferences. Luckily I lived to tell my story. I found Mr Right and moved to Sweden; and there I found… my Stamily (stuttering family)! It felt as in the movie Ice Age, where they thought they were the only ones, and suddenly they found their whole tribes. This made me shout out loud screaming NO MORE! No more shall I cover myself with silence. No more shall I accept that other people don’t know we exist.

I took my handbag to a local chapter meeting. Wow, people who sound like me! I took my suitcase to a national meeting. Wow, people my age were having fun and telling each other jokes, with stuttering and all! I took my suitcase to a European meeting. Wow, people were stuttering in different languages! I took my suitcase to a World Congress. Wow, people were stuttering everywhere in the world, in all countries, and all ages, with all kinds of employment.

The number of worn-out suitcases is huge, because they have travelled all over the world, to local and national meetings; to the European Union (EU) in Brussels and to Nordic seminars. (Next year in Finland, the land of lakes and saunas, which are even on the program. J) I have been to ELSA European meetings; to world congresses and to countless speaking occasions. From sitting on the floor with pre-school children to giving international keynote speeches, of course talking about stuttering. My promise, to myself and to the world, to stop people who stutter (PWS) thinking they are alone, has turned me into who I am today:

Addiction

An addict . A stuttering junky. The day I got my first shot of people who “get it” when I was 27 (!), I was hooked. From that moment on I wanted to know and learn about stuttering, and to pay forward what I’ve learned and experienced in my past. My addiction needs to read and write about stuttering. (Why oh why did Hangouts, blogs, Facebook, Instagram, Twitter and even Pinterest come into my life as ways to communicate about stuttering!) My addiction needs to talk about stuttering, from my poor family members, the person next to me on the train and the airport customer (“You are going to a what, Ma’am?”), to politicians and all possible media. My addiction needs to learn about treatments and it made me try so many of them, from regular speech therapy to acupuncture, healing, wearing stones, you name it. But even more, my addiction needs to meet PWS.

My addiction gets nourished by people who get it. By parents talking about their battle to find the right help for their child who stutters (CWS) while tears cover my face. By feeling my heart explode when a young PWS talks into the microphone with pride on his/her face, stuttering and all. By those devoted Speech and Language Pathologists (SLPs) who cry for joy seeing their clients on stage. I need to meet those strong PWS and role models who changed so many lives. By those PWS who have never met or spoken to another PWS before. By the latest treatments and research that may give some answers. By seeing people hug, sing and dance, speak with everyone, share their deepest emotions and become friends for life. By reading afterwards how big an impact meeting other PWS have made on a person’s life and how that has been a changing moment to expand their comfort zones and make life changes. By knowing they are sharing their knowledge and experiences and paying it forward. By hearing that more and more people stand up and speak up. By knowing that the butterfly effect is making more and more people know we exist and that more and more PWS come out of the closet.

Luckily I’m not the only one who’s addicted and I must admit, we try to get other people addicted too. We have our secret meeting places on the internet, we meet at coffee tables in the corner of the dining room and we suddenly pop up in social media and try to get more people to get their dose of the stuttering outreach virus, just to directly take them in private and fill them with information on how to pay it forward. And when people want out, we desperately drag them back inside the scene by painting the picture how dark and lonely life is outside the stuttering scene.

It’s hard work to keep my addiction fed and unfortunately I now need to skip parts of my kicks and take it slower (who, me?) for health reasons. It’s so extremely hard, so instead of going cold turkey, I try to exchange some of my hard-core kicks with more adjusted ones. Such as making bracelets with stuttering quotes, all from thoughtful (such as “F*** stuttering” and “Proud stutterer”) to funny (“Wait for it” and “Keep calm and stutter on”). Even many of the books I fold have a stuttering theme and one will be available at the auction at the World Congress next year.

World Congress

Yes, congress. Stuttering congress. World congress. In Atlanta, USA, 5-10 July 2016. It is arranged for and by people who stutter, their families, friends, therapists and all other people who want to become a part of our “stamily”. Imagine a thousand people who “get it”. Where you simply enter the door just to find people coming towards you to say Hhhhhi. Where you hear languages you’ve never heard before. Where public tears and hugs are just as normal as a cup of coffee. Where all information on stuttering, personal stories as well as the latest treatments and theories, from all over the world, are all gathered in one place.

A world congress is THE place to start, and maintain, your addiction. But for you newbies, some words of warning.

  • Book your trip and your stay well in advance, because other addicts might have taken your seat and bed already.
  • Do drink a lot of water, as tears, hugs, talking and drinking will drain your body liquids.
  • Get your sleep before and after, as you won’t get much during the congress.
  • Train your vocal cords before you go, so you won’t get a hoarse throat when talking, singing and cheering.
  • Do not bring any books or other activities, as you won’t have time for that anyway.
  • Don’t bring uncomfortable shoes, as the social outings and long dance nights might hurt your feet.
  • Bring headache medication, as those kids and teens workshops may result in young PWS who go from quiet to loud.
  • And bring your camera to capture all those best friend pictures, dressed in Cannes outfits, at the gala dinner.
  • If you are a social person, don’t disturb those who sit in quiet corners, sharing and making new friends. Or join them and find out what’s deep inside a person.
  • If you’re not a social person, don’t go to the many social events, as they might convert you into having an amazing time.

There are many more words of warning and this amazing place is still a secret to many, but, as you’re still reading this, I guess you’re one of us and you now have our blessings to read and spread the news coming from the two hard-core organisations who together organize this event: the International Stuttering Association (ISA) www.isastutter.org and the National Stuttering Association of America (NSA) www.westutter.org.  Combining the heart-warming and encouraging NSA conference with the ISA world congress bringing together PWS from all over the world is a true paradise!  So if you want people to get that all-time-high kick together with you, start recruiting now!

I don’t want to get rid of my addiction and I hope the world congress will bring new stuttering junkies to the scene, to have and to hold, from this congress forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part. And may my last words be “Keep talking”.

Anita S. Blom

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Comments

Suitcase + Addiction = World Congress — 34 Comments

  1. Welcome to my paper! As you can see I’m very passionate about meeting people who stutter, in person as well as online, so I’m looking forward to read your comments and get to know you better. Feel free to ask me any questions you like. If you want to know more about me, do read my previous papers, which will tell you about my journey on this real life roaller coaster. And as I like to write proper replies, some even lengthy, do also read my replies to other comments, as you might find a lot of information already there. Happy ISAD and I’ll hopefully meet you in person at the next World Congress in Atlanta! 🙂

  2. Hi Anita,

    I am not a person who stutters, but I am an aspiring Speech Language Pathologist in graduate school learning about Fluency disorders, in particular stuttering. I know exactly what you mean when you say you have an addiction and you must talk and learn about it in every way you can. My question for you is, You mentioned you tried so many different types of therapies that are different from a ‘normal approach’ to stuttering, was there one that you thought worked surprisingly well even though it is out of the box or unconventional?

    • Hi Korie and thanks for your interesting question. I both tried and learned about lots of therapies. From regular therapy and McGuire technique, to acupuncture, carrying a stone, to singing my words and waving my hand while speaking. It didn’t help and I felt, and looked, stupid. But still, I think that everyone should try what he/she thinks could work, as we all are different. But with an open mind. And to stay away from any theory that promises a quick fix for a lot of money.

      Breathing excercises did nothing to me, as I play the saxofon and can control my breath pretty well. It did make me dizzy and stressed. Relaxing as well. Reading out loud was no problem to me, neither was speech training in the therapist room. But again, all of these might work for other people, just not for me. What did work for me was a mix of become a better speaker (articulate, body language, voice training etc), confidence (fighting my demons and doing the things I was afraid of doing) and Mindfulness + NLP (to let go and realize many hurdles are only in my mind, which lots of other papers here are about as well).

      That’s why it’s so important for SLPs to get to know the client and not get stuck with regular therapy, as for some, it doesn’t help. So to learn more about different, and alternative, ways to have more suggestions down your sleeve and see what fits with this client. We both own pieces of th puzzle, so the thing is to try and find which ones fit. 🙂

      Happy ISAD!

      Anita

  3. As always I loved reading what you had to say, you are an inspiration to us WWS. I never taught back 4 years ago when you accepted me to go to my first Elsa meeting that I would become addicted to the next time I could pack my case to meet all the amazing people I have since.I have now become an addict like you and can not wait to experience my first World Congress with you and our many old and new friends to be made.I never understand the saying Don’t Let Your Stammer Stop You Doing What You Want To Do “DLYSSYDWYWTD” until I met you and helped me see that my stammer is a gift and not a burden.

    Karen

    • Thanks Karen. Your journey has been an inspiration to me. I have seen the transformation in you, the way you look, act and think, which makes me happy every time I see you or hear from you. You personify the DLYSSYDWYWTD! Being your friend is a true joy and I’m so happy you’ll be joining us for yet another conference to feed our addiction. 😉 Hugs to you and keep talking!

  4. Hi Anita — LOVE your enthusiasm!! My friends and family also glaze over when I start talking about my advocacy work and Voice Unearthed. So glad we have online forums to help satisfy our addiction. Planning to make it in July so hopefully we’ll meet in person…looking forward to that!

    • Dear Dori. It would be such a pleasure to finally meet you in person! I don’t always reply, but I do read your posts and I think I speak for the whole “stamily” (the stuttering family), that we’re proud and thankful to have you on board, as you’re a true role model who stands up for children who stutter. Enthusiasm and persistence is what will make the ISA vision come true: a world that understands stuttering. Happy ISAD and keep talking!

  5. What an experience you’ve had! I’d like to thank you for sharing your story because it was very interesting to learn more about PWS through it. I imagine that everyone’s journey is different, and I have a question about the first chapters, and perhaps the less supportive ones, of your journey. Have you been back to the Netherlands and back around those in your first environments that were’nt supportive of your stutter? If so, how did it go? Did you feel that you’ve reached a place where it did not matter anymore that they once didn’t understand stuttering and weren’t the best to have around? And if not, would you want to go back and have them see the happy and addicted PWS that you’ve grown to be?

    Ani

    • PS – It’s interesting that you call your need to interact with PWS an “addiction”, especially because the word is usually used for a negative reliance of too much of something, whereas in your case, these doses have clearly been a positive outlet in your life. If I may, I have a second question: Although this addiction has allowed you to interact more with people who understand, relate, and accept the normality of stuttering, do you think it is possible that it may alsolimit someone from interacting with PWdon’tS?

      Thank you

      • Thanks for your insightful questions that show you got the deeper meaning of my paper, Ani, and yes, you may ask as many as you want. 🙂 Yes, everyone’s journey is different. Both how we are treated by the world around us, how we see stuttering, how we stutter, what works and what doesn’t, etc. I stuttering wasn’t accepted at home, I didn’t speak about stuttering from students and teachers, nor the bullying, nor the suicide attempt, nor the sexual from one and the mental abuse from the other SLP, until I, as the age of 27 (!), found out I wasn’t alone. From that moment on I never stopped talking. At first my parents didn’t get it, but after a poem I wrote at the age of 40, they finally opened upand became my biggest fans. I spoke to the teacher who bullied me the most and she told me she did it because she didn’t like my father. And today I travel the world to speak about stuttering. My major highlight was being the keynote speaker at the last World Congress, in the Netherlands, exactly 40 years after onset. My circle was round. Today I am proud of who I am, what I’ve done with the my dark experiences, as I see the difference I make amongst your people who stutter at youth camps and being there for them throughout their lives. I see the difference I make when talking to classes and teachers, to politicians at all levels, to everyone I meet. I’m known as the woman who stutters, have been in every weekly magazine and on local and national radio and tv, as I chose to be the voice and face, and to speak up for those who are still silent. And all because what has happened to me. Not because I want to be a VIP, but because I want to prevent others from having to go through what I’ve been through, and to have to wait for 27 years to finally find another person who truly gets it, even without having to explain.

        An addiction is not always negative. My chocolate addiction totally isn’t. 😉 A healthy addiction to the gym isn’t. Some people cannot see a crossword puzzle without solving it. It’s someting you need to have to make you feel good, something energizing that brings a smile on your face and makes you want to have more of that. But like any addiction, it shouldn’t get out of hand. I have a life outside the stuttering scene and I don’t get a loan to get to all possible stuttering events. I even cut down on all FB activity in the many groups I’m in because of other activities I’m involved in. But I haven’t missed a world congress since my first one in 1995, because meeting PWS from all over the world and unite, simply because we have this one thing in common, is such a joy! So to answer your question: in the beginning I was totally absorbed with the stuttering society, as I had so many questions and such a need to meet other pws, I was like a dog in a human world, where every other dog made me jump for joy. I was on every chat, went to every meeting etc, simply because I had such a third for knowledge and acceptance. Today stuttering is a part of my life, but not the meaning of life. So stuttering always turns up during conversations, simply to wipe off that “what-is-she-doing-question-mark” on their faces, but stuttering today is A PART OF MY LIFE, and no longer MY LIFE. In fact, I was diagnosed with another illness, called ME/cfs, and as I never even know it existed, I once again made the journey to find people who live with the same illness, go to meetings learn and talk about it etc, but this time the journey was so much shorter. As the illness demands a total change of lifestyle, which other people cannot even start to imagine, it’s so good to meet those who have ME/cfs. But I am not my stutter, I am not my ME. I am a person who happens to have these things, otherwise I am a person just like anyone else and would like to meet, greet, hug and talk to anyone else.

        I hope my long reply answers your questions. If not, do let me know. Happy ISAD and keep talking!

  6. Anita,
    I am currently a graduate student studding speech pathology and taking a stuttering course. My professor has told us that one of the best things we can do to help a client who stutters is show them articles like this. Knowing they are not the only one out there that stutters can help ease the feeling of isolation. This message was reaffirmed after I read your article. I am so happy that you found your “Stamily!” Thank you for sharing this and I wish you the best!

    • Many thanks for stopping by, Geena. Glad you liked my article. I truly hope that you not only show your clients articles, but that you also inspire them to meet up with other PWS, get into chats and social media groups. Reading an article is great, but actualy hearing other people stutter is such an amazing feeling, a feeling of belonging. Even those who refuse and are in denial might completely change that attitude towards stuttering by meeting others and hear their stories. And of course, you, being an SLP (student) are most welcome too. We all have pieces of the puzzle. Together we can make a difference.

      Happy ISAD and keep talking!
      Anita

  7. Anita,
    I’m so glad that you found your stamily! Thank you for discussing the importance of having a support group of PWS. It is important for individuals who experience stuttering to understand that they are not alone in their experiences and feelings surrounding stuttering. I am not a PWS but I am a graduate clinician in SLP and I have worked with clients who stutter and I have always felt that it is important for them to know that they are not alone in their struggles. It sounds like your experiences in participating in events for PWS have really had a positive impact on your life. Thank you for sharing your perspectives and experiences!

    Natalie Schulz

    • Thanks for your kind comments, Natalie. Knowing I was not alone was litterally the difference between life and death. There are lots of social media groups, chat rooms and other information on stuttering nowadays, but nothing is so overwhelming as coming to a group meeting, a national conference or a world congress, and meet people just like you, who GET IT. Whether you want to talk about nothing else but stuttering, or not want to talk about it at all, they GET IT! You might be scared the first time, but once you come inside that door and people welcome you and… they too stutter, you’re a part of your new family. I’d highly recommend it to SLPs as well. To interact with PWS outside the clinic room, not as clients, but as friends, and to see what these gatherings are all about. You will not only find PWS, but also devoted SLPs who once came and never left, as they too feel that enormous energy and cry tears of sadness and joy when they hear real life stories of battles and victories. You are so welcome. 🙂

      Happy ISAD and keep talking!

      Anita

  8. Hi Anita – as usual, great paper. You have so perfectly and eloquently summarized the feelings you get when attending stuttering events and meeting other people who are part of the community. I, too, feel addicted to the conferences and can’t imagine missing one of my national events. It is still my goal to one day physically go to one of the international conferences and get that experience as well.
    I like the suitcase analogy very much – I always bring home so much more than what I started with. I find I have to find room to pack the good feelings, compassion, empathy and support in my suitcase for the return trip home. I noticed an interesting question from someone above, who wondered if such immersion in the stuttering community limits our connections to people who don’t stutter. What do you think? Are more of your friends stuttering friends or fluenters? – Pam

    • Thanks, Pam. Like you, I speak from the heart. You explain it so well, to bring home a suitcase full of emotions, but there is alwas space for that, as other people take a piece of you to put in their suitcases.

      As you can see from my reply to Ani, who asked the question you refer to, I do have lots of friends who stutter. But as I was diagnosed with ME/cfs, I got into that “scene” as well and now have lots of friends there, as they GET it, when my energy level is low, and together we spend time under a blanket on the sofa drinking tea. 🙂 Still, like any addiction, life is more than those that box of chocolate. You also need a healthy dose of fruit and veggies. And while PWS GET stuttering, but other people GET other things. I have friends from my band, friends from the cinema I sometimes help out, friends from the school we’ve been to together, the etc. The key thing is to do different things, with different people, for different reasons, to talk about and experience different things. But yes, I believe there are PWS to whom other PWS are their whole world, simply because they are afraid to open up to other people, which is such a pity, as they have so much to give to so many other people as well. Because we AREn’t our stutter, it’s just something we do. One thing of many. Looking forward to share my addiction with you next year, dear Pam. Happy ISAD and keep talking!

      Hugs, Anita

  9. Hey Anita! I loved your story! Thank you for sharing! I appreciate the humor you incorporated. I also love the word “stamily” it is so catchy! I am a Graduate student studying Speech Pathology at Appalachian State University. I understand that you did not get ‘hooked” until you were 27 so I’m curious what your feelings of stuttering were before then? Thank you!

    Amy

    • Thanks Amy. Humor is the best way to deal with any challenge, as it helps you to put things in perspective. I hope you checked out the papers from Nina G and other stand-up comedians who stutter. 🙂 I got hooked at the age of 27, simply because that’s when I finally found out I was not the only one. During my first 27 years, I was told at home I was doing something wrong, that it was my fault and I was told to be silent on family occasions. In school I was bullied by classmates ( I was first hit and called fish, as I couldn’t talk, but as the youngest of 7 I knew how to fight back, so I was then totally excluded from any contact with any other student) and teachers (I wasn’t allowed in one class as I took too much time to talk and was forced upon oral exams in front of the class (being the only student who had to), simply because, what she stated afterwards, she didn’t like my father.) I was told not to study languages, as I wouldn’t go anywhere anyway. I was even told not to study at all, as I would never be able to get a job. I was, in fact, told I couldn’t get my dream job because I stutter. I was also sexually abused by one SLP and mentally abused by another SLP. Needless to say I tried to commit suicide. (All this is to be read in my previous papers for different ISAD online conferences.) And than, at the age of 27, I received a broschure about the stuttering association. What??? I got very angry noone had ever told me there were others, not even the SLPs and swore to myself to become the face and voice for PWS. Do search for my name + stuttering and you see I have been true to my promise ever since. I now dedicate my life to PWS, especially children and young people who stutter and travel the world (me, who wouldn’t go anywhere anyway) to talk about stuttering. So my burdon has become my assett and I’m proud to say my story has changed other people’s lives. Feel free to ask me anything you like, including to come overseas and speak to SLP students. 🙂 Happy ISAD and keep talking!

  10. Hi Anita! I really enjoyed reading your story, as you write with such enthusiasm! I loved your Ice Age reference, and I know that must have been such a defining moment with you. I was wondering now that you have had to adjust the way you feed your addiction, if you’ve picked up any new ways to feed your addiction (other than the bracelets)? I was also curious what, if any, type of therapy you found really beneficial for you.

    • Hi Liz and thanks for your interesting questions. My struggle with my stuttering journey (please read my reply to Amy above this one), has helped me to cope with my new struggle to cope with my illness, ME/cfs. It taught me not to be ashamed of it, to talk about it and educate, to find people like me and to share struggles and accomplishments, to focus on what I CAN do instead of what I cannot do, and to find new ways of turning life into joy. I’ve had major use of NLP and Mindfulness, than and now. NLP helped me to focus on facts, instead of what I, and other people, think. That I myself can change my mindset and look at life in a positive way, full of possibilities, filled with enthusiasm and laughter, which takes me through hard times and dark moments. Mindfulness has helped me to make decision. To ackowledge the problem and to decide whether to do something about it (and DO IT), or let go and move on. It helps me to no longer alter the what if’s and the could/should have’s. Both NLP and Mindfulness helped me to let go of the past, enjoy the moment and look forward to the future. Yes, I do struggle, get frustrated, feel incapable and even unworthy sometimes, but these tools help me to get back on track and make me focus on what I CAN do. Bracelets, I learned book folding and fold books with a stuttering theme. I still help out with whatever I can, although in my pace, such as joining this conference and help out with the Swedish website. Our local chapter has meetings not only talking about stuttering, but also to teach each other things, so last months I had a presentation on stuttering and social media. I can still travel, although it takes much more planning, so I’m planning for the next WC in Atlanta. 🙂 (I have been the keynote speaker for the NSA and for the last WC, so that’s off my bucket list. 🙂 ) And of course I can make my voice heard. There is no person in my environment, at work, in private, online and offline, who don’t know I stutter and who haven’t heard/seen me talk or write about it. I still contact the media, I still speak to that person next to me on the train about stuttering. It took me 27 to find out there were other people like me and it almost killed me. That’s not going to happen around me! That’s why I’m surprised so many people still feel that shame (and why, as stuttering is not our fault!) and don’t talk about, not share a single link on their social media, not join a meeting. So I share my addiction and try to get others to join me to create the butterfly effect. Stuttering awareness is life changing. If not for me, than hopefully for someone else. I hope you, Liz, can help us to spread the word and may we see each other in Atlanta next July. 🙂 Happy ISAD and keep talking!

  11. Thank you so much for sharing your story. I’m glad you overcame so many obstacles and emerged as someone who loves life and helps others find purpose and encouragement. I love the idea of your suitcase as representative of your travels and the many things you’re learning. I was wondering if you had any counseling from SLPs, and what might be helpful for therapists to know. Thank you!

    • Hi Vicky and thanks for your question. My private story is a horror story, which I wrote about in the many previous papers I wrote for the ISAD conference. At home I was not allowed to stutter and it was “my fault and thus my responsibility to get rid of it”. In school I was bullied to silence by classmates and either not accepted or bullied by teachers. I was told to not continue my studies. I went to an SLP in my mid teens who sexually assaulted me. I went to another one in my late teens who, as I wasn’t successful, told me it was my fault I stuttered. Needless to say I tried to commit suidice. My life changed when I met other pws at the age of 27. I learned to accept myself, to fight for my (and other pws´s) rights and started speech training with a group of pws who practice a mix of stutter-free speech and public speaking. The first years I learned the techniques, but couldn’t apply them. Until I got a job in school (yes, stuttering teacher!) and I finally found out how, and why, to implement these techniques. As I learned communication is the key thing. So many fluent people cannot communicate, while pws can win Toastmasters competitions over fluent people. So, a mix of techniques to stutter more easily, public speaking skills, overcoming fears and working on self esteem and self image, meeting other pws, bringing parents and friends into the therapy room (or even get out of that room, as the room is like watching Magnum in Floriday and than having to get out in a snowstorm and get a gun to your head) and try to find our where your client is, that day, that moment and have a big box full of different approaches for that very state. Yes, it’s hard to be a SLP, but what a challenge and how rewarding! 🙂 So with guidance of an SLP with an open ear and mind, who listens to what the client wants and needs, asks a lot of questions and is willing to try different things, I’m sure the client will make progress. I also hope you will guide pws of all ages as well as their parents (and yourself!!!), to go to meetings, camps etc. And also join chat and social media groupd. And the therapist might need to work outside the book, focussing on what might work with this very child. That’s why it’s good to specialize in stuttering and the different approaches, and maybe even learn more about psychology, to get the child to talk about what’s inside the heart and mind. And I’d also highly recommend SLPs to join a children camp. Just to observe, play with the kids, talk to the parents and to ask questions, to learn BUT NOT TO TREAT. My fluency comes from being me plus a mix of stutterfree speech, public speaking, NLP, Mindfulness and expending my comfort zone. And not focusing on the goal, but to enjoy the journey. 🙂 We need to ackowledge ourselves, find out who we are, where we are and what we want. I learned to not let stuttering define me. Stuttering is not who I am, it’s what I do. I am so much more. I also learned not to blame all on my stutter, but to examine myself and accept that some things are due to my personality. I also learned to filter advice, as people don’t know me nor my situation. So, as wise men say: walk with me, not in front or behind, just beside me. And to my stutter I’d say: I don’t like you, but at least you keep my fire up and take me to amazing people. 🙂
      Happy ISAD and keep talking!

      Anita

  12. Anita, Wow! Thank you for so passionately sharing your story and advocating for PWS. From your experiences around the world and with such a diverse community have you experienced a difference in how PWS are viewed in different countries or cultures?

    • Hi IMS. Thanks for your comments and interesting question. My stuttering was ignored because it was some kind of punishment from above, for something my parents had or had not done, according to them at least. In some countries PWS are posessed by the devil. In some countries treatment consists of hitting yourself with the lung of an animal or eating crickets. And in some countries stuttering is ok, and thus there is no treatment available. You might like to Google for IPATS (International Project on Attitudes Toward Stuttering)by Kenneth O. St. Louis. There’s some amazing (and scary) data that might interest you. That’s why it’s so important to find answers. Although research is slowly moving forward, there are still so many question marks on the why’s and how’s of stuttering, treatment and the role of society. So if you want to challenge yourself, we’re the perfet target group. 🙂
      Happy ISAD and keep talking!
      Anita

  13. Anita,

    Thank you so much for sharing your experience! I am so glad that you found your Stamily, and absolutely love that word! I love that you discussed the importance of having a strong support system around you and realizing that there are other people who are experiencing the same thing that you are. I am not a PWS, but a graduate speech-language pathology student. We often talk about how crucial it can be for some individuals to connect with others so they can realize that they are not alone. I hope that PWS can also feel comfortable enough with their SLP (if they have one) to be open and express how they feel; however, I realize that just being a resource can often not be enough. I hope you enjoy the World Stuttering Congress! It sounds like an amazing experience that I wish I could attend!

    ~Chelsea McKinnis

    • Hi Chelsea. Thanks for your insightful comments. Just as it’s important for you to meet other SLP (students) and exchange thoughts and experiences, it’s important for PWS to meet others. but not just us. Parents need to share their questions and experiences with other parents. Sibblings to CWS need to join a children camp and (maybe for the first time) not be the one who’s talking the most. Grandparents might need to meet with PWS and share the thoughts they cannot share with their children about their grandchild who stutters. PWS and SLPs should meet in places where they are anything but therapist/client, but simply enjoy the same things, including a drink at the bar, share tears of pride and joy, ask each other questions they could never ask in the therapy room and have fun on the dancing floor. We are all a piece of the puzzle, and those missing people are not only to be found in books and numbers, but IRL, by real people. So if you have a chance, do join a local and/or national meeting, a children camp or an international gathering, where there are PWS “in the wild”. You might get addicted too. 🙂
      Happy ISAD and keep talking!
      Anita

  14. Hi Anita,

    I love your message! Your zeal for meeting and connecting with PWS is inspiring. As a graduate student in Speech-Language Pathology, my education in stuttering supercedes my experience with PWS, which I realize is doing my future clients and myself a disfavor. Like you’ve so passionately stated, connecting with people who “get it” is addicting and such an important support to have. Though I may never fully “get it,” your post has reminded me that reaching out, learning about, and connecting with people can make the world of a difference. This applies specifically to my profession and working with PWS, but also to life in general. Is there any particular advice, beyond attending camps, organizations, meetings, etc., that you have for speech-language pathologists or other professionals that work with PWS?

    Best wishes,
    Alexa

    • Hi Alexa and thanks for your reply and important question. The way you reply shows you do GET IT and your clients will be thankful to have you as their SLP.

      My advice is multiple.

      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.
      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.

      And 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. 🙂

      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. 🙂

      And as I wrote to Chelsea, just as it’s important for you to meet other SLP (students) and exchange thoughts and experiences, it’s important for PWS to meet others. but not just us. Parents need to share their questions and experiences with other parents. Sibblings to CWS need to join a children camp and (maybe for the first time) not be the one who’s talking the most. Grandparents might need to meet with PWS and share the thoughts they cannot share with their children about their grandchild who stutters. PWS and SLPs should meet in places where they are anything but therapist/client, but simply enjoy the same things, including a drink at the bar, share tears of pride and joy, ask each other questions they could never ask in the therapy room and have fun on the dancing floor. We are all a piece of the puzzle, and those missing people are not only to be found in books and numbers, but IRL, by real people. So if you have a chance, do join a local and/or national meeting, a children camp or an international gathering, where there are PWS “in the wild”. You might get addicted too. 🙂

      Happy ISAD and Keep talking!

      Anita

  15. Anita,

    I think your take on stuttering is very inspiring. I love that you whole heartedly embrace it. I haven’t had a chance yet to look at your past online posts but I was wondering if you feel like the bullying you faced was based on a cultural basis or a something that was just less accepted at the time? Also, do you think that children who stutter now face the same ridicule that you did? Thanks again for sharing your story!
    Best Wishes,
    Megan

    • Hi Megan and thanks for your interesting question.
      My private story is a horror story, which I wrote about in the many previous papers I wrote for the ISAD conference and in many keynote speeches. At home I was not allowed to stutter and it was “my fault and thus my responsibility to get rid of it”. In school I was bullied to silence by classmates and either not accepted or bullied by teachers. I was told to not continue my studies. I went to an SLP in my mid teens who sexually assaulted me. I went to another one in my late teens who, as I wasn’t successful, told me it was my fault I stuttered. Needless to say I tried to commit suidice. My life changed when I met other pws at the age of 27. I learned to accept myself, to fight for my (and other pws´s) rights and started speech training with a group of pws who practice a mix of stutter-free speech and public speaking, but also NLP and Mindfulness. So, a mix of techniques to stutter more easily, public speaking skills, overcoming fears and working on self esteem and self image, realizing I am not my stutter but simply something I do, meeting other pws, took me to where I am today: a piblic speaker, travelling the world THANKS to my stutter! Unfortunately being a leader of children and European Youth camps, I still hear horror stories. Where I live waiting lists are over one year for a first consultment. Bullying and the way people treat us is still beyond belief. The advice people get and the knowledge of SLPs about stuttering still makes me sad. That’s why I do anything to get the word out and I am so happy SLPs and SLP students are willing to learn, both at this online conference, but also coming to gatherings where PWS meet. To get to know us “IRL”, ask questions and not as client/therapist, but to take that chance to learn more. As we are all parts of that puzzle. I truly wish you would help us to bring people together. PWS, SLPs, family members, teachers etc. And why not even take them inside the therapy room? I’d also advice you to check out the IPATS project with Kenneth St Louis. And if you want to do research on stuttering and bullying, that would be MOST helpful!

      Happy ISAD and Keep Talking!

      Anita

  16. Hi Anita,

    I am a graduate student working towards an M.S. in Communication Sciences & Disorders. I love that you found inspiration in your interactions with other PWS as I am a huge advocate of reaching out, specifically in finding strength through adversity and the realization that you are not alone. However, I’m curious about the onset of stuttering for you at the age of nine and what you think the major contribution(s) were. Can you speak to this at all?

    Thank you,
    Candice

    • Hi Candice and thanks for your intreguing question. I started stuttering at the age of 9. I probably inherited the stuttering gene, as I (later) found out other family members stutter as well. By that time we moved from a big city to a small village, where they spoke a strong dialect. I tried to learn, but that made them laugh. And it made me stutter. Which made them laugh even more. And the bullying started… My private story is a horror story, which I wrote about in the many previous papers I wrote for the ISAD conference and in many keynote speeches. At home I was not allowed to stutter and it was “my fault and thus my responsibility to get rid of it”. In school I was bullied to silence by classmates and either not accepted or bullied by teachers. I was told to not continue my studies. I went to an SLP in my mid teens who sexually assaulted me. I went to another one in my late teens who, as I wasn’t successful, told me it was my fault I stuttered. Needless to say I tried to commit suidice. My life changed when I met other pws at the age of 27. I learned to accept myself, to fight for my (and other pws´s) rights and started speech training with a group of pws who practice a mix of stutter-free speech and public speaking, but also NLP and Mindfulness. So, a mix of techniques to stutter more easily, public speaking skills, overcoming fears and working on self esteem and self image, realizing I am not my stutter but simply something I do, meeting other pws, took me to where I am today: a public speaker, travelling the world THANKS to my stutter! Thanks to all this, my stutter mostly is minor, but it can rapidly change (like in the radio interview, where I litterally stuttering on every word, with complete blocks, repetitions, tics aso). But hey, my message was about stuttering. 🙂 Thanks for stopping by, happy ISAD and keep talking!

      Anita

  17. Hi Anita,

    I am a speech pathology grad student and I really enjoyed reading your article. I strongly agree that for a PWS, having a sense of community is not only lessens the stutter, but strengthens their self esteem. How would you recommend I create this community in a small town elementary school with only two students who stutter? I am worried about one of them in particular because he rarely speaks, and seems angry when I try to get him to. I think being around other kids and adults who stutter would be wonderful for him, but I’m at a loss for how to make that happen.
    Thank you!
    Aileen

    • Hi Aileen. A small town and only two students who stutter. Yes, that’s tough. Teens and early twenties are a tough group to reach, as there’s so much going on in their lives and bodies as it is. Stuttering is a nuisance and people commenting on what they should and should not do, as well. You must make them want to make that step, which is hard work. I too live in small village and have a hard time to get these youngsters to come to our meetings. Still, my advice would be to try again. Do these two have speech training together, as in group therapy? That might make them bond. When I speak to students, I try to show them how much fun our camps are. Pictures, stories, movies, showing the fun, the parties, the cool kids. I don’t know if you are a therapist, teacher or parent. Try to not directly confront him, but leave leaflets on his private please (bedroom, toilet) where he can read in peace. Watch a movie on stuttering yourself, without asking him to sit by you, and show you’re happy. Leave a website on youngsters who stutter open on your computer, when you know he will pass by. In short, try to reach out indirectly iso directly. As a teacher, you might bring up the subject in class about how great youth camps are and give examples and show material from youth camps, incl disability camps etc, without focusing on stuttering in particular. May Dec 3 is a good opportunity, being the International Day of People with Disabilities. I wish you all the luck. If you have more questions, google on my name and you’ll find my contact information. Thanks for caring. Keep talking. Anita