Stuttering awareness starts with YOU! (Anita Scharis Blom)

About the author: Anita Scharis Blom, born and raised in the Netherlands, is living in Sweden. She worked as an operation manager for the Workers’ Educational Association. She was 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 was a national and international keynote speaker on stuttering and had her own stuttering consultant company. She was 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

 

Peter who stutters comes to a stutter camp for children who stutter (CWS) and their parents. He meets other children (and adults) who stutter, play games, go to the zoo and eats loads of ice cream and forgets all about his speech. He is so happy to find out he is not alone, he now wants to talk about stuttering to his classmates and teachers and he knows he can get help from his Speech and Language Pathologist (SLP) and from his local stuttering chapter.

Grace, mother to Latisha who stutters, also comes to a stutter camp. She thought it was her fault that Latisha stutters because of the divorce. Now she meets other parents with the same questions and fears and she hears that no one is to blame for stuttering. She learns about the rights of her child and is now ready to confront the principal to gain knowledge and information material on stuttering for the whole staff, knowing that the parent network and the Stuttering Association where she lives is there to support her.

Catherine, a grandmother, and Jim, a brother to a CWS, come to a family camp, together with Carl who stutters. They have a blast meeting other families and children who stutter. They are stunned to see all these CWS order from the ice cream bar with the 300+ flavours and have a great time playing games with the other families. Catherine and Jim both learn what stuttering is about and what to do and not to do to help Carl. It’s hard for Catherine to learn she too has to adjust the way she speaks and hard for Jim to realize that the CWS are in the centre of the attention this time, but at the same time they both are so happy to see Carl thrive and grow as a person.

Barry is best friends with Felix, who stutters. Barry goes to the SLP together with Felix to also learn about stuttering and what to do to help. This way Barry can help Felix to explain to others what stuttering is about and together work on Felix’ speech training and assignments out on the street and they both have a good laugh when Barry tries to stutter in a shop.

Mandy is going to a European Exchange for young people who stutter. When she meets others her age who also stutter, she comes out of her shell. A week filled with workshops on public speaking, mindfulness, meditation, rights and values, changes the way she feels about herself and makes her realize she herself can make the change she has been waiting for. She never slept so little and laughed so much, even the toilet cleaning and the cooking chores are a joy. When she comes home she decides to go for her dream job and also joins the theatre group.

Sheila is married to Chris. When Chris comes home from a stuttering event, he’s always on a high. He calls his friends “stamily”, he is active within the stuttering community and if he’s not at an event or a board meeting, he’s online writing letters and in chat groups. Sheila was not very happy with it at first, as she felt redundant as he changed from being shy and at home, into being confident and “all over the place”. Not to mention the time and money that is spent on his activities. So Sheila decided to join him and see what was going on and who he called his stamily. Afterwards she realized why this group is so important to him and supports him to support others. She does not always join him, as she feels he sometimes needs this time with his friends who “get it”. He’s happy she has become a part of his world and she’s happy to spend time with her friends while he’s away.

Mike and Kate are at a world congress for PWS. They are having the time of their lives! Keynote speakers and workshops giving an insight on therapy and the lives of PWS from all over the world. For Mike who stutters it’s an amazing experience and a challenge to stutter in different languages. Kate finds it inspiring to meet other spouses and hear their experiences. To find out the fears and challenges from both PWS and non-PWS is for both an eye opener, as they find out they have more in common than they thought. To see Mike open up and share things Kate never knew, while seeing her husband challenging himself at the open mic, took their relationship to a new level.

Mohammad got a scholarship to attend an international stuttering event. He became so inspired by both PWS who stutter no matter what, and by SLPs who stand by their clients, providing them the best care possible. He returned to Africa and wrote an ad in the local newspaper where he was searching for other PWS to meet. The local radio station read the ad and asked him for an interview. The interview was heard by an SLP who contacted Mohammad. Today there is a local self-help group and they are aiming towards becoming a National Stuttering Association and, together with the association for SLPs, raising awareness against old-fashioned remedies that are of no use.

Lynn is an SLP. She not only works with her clients who stutter in the therapy room, she also goes to some of their meetings and events. As this is where they are no longer therapist-client, but they are all there for the same reason: to learn and share. She finds it amazing to find out what it’s like to stutter through the eyes of a person who stutters (PWS) and she gladly helps out at stutter camps.

Mia knows what it’s like to stutter, which gives her a benefit when she meets PWS in her therapy room. She knows the struggles and the victories, even though all of her clients’ stories are different. She meets both parents who don’t really believe in her because of her stutter, but also clients who feel they can trust her, as she’s been-there-done-that. She also knows there is much more to stuttering than speech, so she works together with therapists in other fields, such as a Mindfulness teacher and a Qigong instructor, a CBS and a NLP specialist, a choir leader and a theatre group, and lots of others she can refer her clients to.

Jack is a head-hunter and sitting in front of Larry who wants to become the CEO for a major company. Jack observes that Larry has a stutter and as he doesn’t really know so much about stuttering, he asks Larry about stuttering and Larry’s thoughts about being a CEO who stutters. When the interview is over, Jack contacts the National Stuttering Association and reads the information he receives. The impression he got from Larry was all good and Larry was highly qualified for the job. Jack also learned that stuttering doesn’t have to be a problem, as Larry has good communication skills, important management skills, a great sense of humour and deals with his stutter really well, so he decides to hire Larry.

The European Parliament sometimes opens its doors to disability associations. People with different disabilities get to speak to their Members of Parliament and also get to address the whole Parliament for 3 min each. The building is disability-friendly, with disability toilets, no carpets, sign languages interpreters etc. Karen, who represents the stuttering society, finds herself discriminated, as no adjustments were made towards her stuttering, so she contacts the Parliament. Also, to not exceed the strict 3 min deadline, she made three variations of her speech: one if she would stutter a lot, one if she would stutter as usual, and one if she would be fluent (which sometimes occurs when she is giving a speech). When it’s Karen’s turn, she suddenly hears “The next speaker is Karen and she gets four minutes because she stutters”.

Saida is a refugee. In her native country helping people who have been wounded is far more important than helping PWS. Stuttering is also seen as something wrong and shameful there, so it’s hard to find a job or a husband. And as women who stutter (WHS) are a minority, she has never met other WWS before. When she found a brochure from the local self-help group, she decided to take a take a look. The overwhelming feeling of meeting other PWS, other WWS, gave her so much pride and joy, she is now helping out to translate the information material on stuttering into different languages.

Claire is 7 years old and they just moved to a new village. Her mother Amanda is feeling uncomfortable to meet the new neighbours, her daughter’s new teachers and the parents of Claire’s classmates, as she stutters.  She had worries about her stutter already when they were talking about having children, as Amanda didn’t know if she could read to Claire, speak up for her child or having to explain her speech to Claire’s friends. Claire understands that her mother is just as worried about the first day of school as Claire herself. She makes a beautiful drawing for her mother, and gives it to her mother at breakfast on Monday morning. When they arrive at school and the teacher introduces herself and shakes both their hands, Claire says “I’m Claire and this is my mommy Amanda”. Soon Claire is off to the playground and Amanda gets all the information about the new school.

Lisa is a teacher. She didn’t understand why Robert never raised his hands in school and never seemed to be playing with the other students during recess, while on the other hand he seemed to be interested in maths, geography and sports. He had good grades when it came to written exams, but at oral exams he seemed to not have done his homework, or happened to be ill. She decided to talk to Robert’s parents and learned Robert has a stutter. After reading material on stuttering and speaking to an SLP, she talked with Robert and he gives her some useful tips, such as giving a special sign when he knows the answer, but is not able to say the words, or to record himself instead of giving a live presentation. He is also allowed to use his DAF device is he wants to. Together they decide to ask the local self-help group to come and give a talk to the students and teachers.

Eliah never liked his stutter, but he doesn’t like the way people react to his stutter either. He decides to buy a t-shirt and buttons with proud, funny quotes, such as “I’m worth waiting for” and puts them on his coat, for all to see. That way he doesn’t have to worry about people who don’t understand why he sounds and moves like he does, as they now see he just stutters. It also makes it easier for people to approach him and ask questions about his speech.

Ben is a covert PWS. He has been hiding his stutter for years, but he feels he is losing himself, as he, in fact, is a very overt and outgoing person. But that’s that not all he’s hiding. When he reads about the stuttering convention being in his city, he decides to register. He gets a name tag with a ribbon that says PWS, but as the hotel lobby is full of people, he quickly hides the name tag in his pocket. In his room he reads the program and the adrenalin suddenly rushes through his veins when he reads about Passing Twice, an organisation for LGBTQ people who stutter. He decides to wear his name tag and enters the lobby with a smile.

There are so many real-life examples on how each and every one of us, can teach the person next to us, what stuttering is all about. What can YOU do?

Keep talking

Anita S. Blom

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Comments

Stuttering awareness starts with YOU! (Anita Scharis Blom) — 23 Comments

  1. Hi Anita – what a great idea for an ISAD contribution. These real stories are something we can all relate to and really shows the power of raising stuttering awareness. This collection of stories would be great to share at stuttering support meetings and I’m thinking even as a resource for the ISA. You continue to show what a great advocate you are for the stuttering community, year after year. Thank you for all that you do.

    • Thanks for your kind words, Pam. As you yourself know so well, it’s so important to educate, as there are still way too many people who don’t get it. Unfortunately many of us think “I can’t do a blog like Pam’s amazing blog about Women who stutter”, “I can’t write to a politician” or even “I myself can’t make a difference. But think of that one mosquito that can keep people awake. 🙂 Everyone can do something, however small. F ex write to a magazine “Me/my child stutters, where can I turn to?”, when if you yourself already know the answer. But the question will be printed and the answer given, for all (who also wonder, but never dated to ask) to read. Together we can make a difference!

      Keep taking! 🙂

      Anita

  2. I really enjoyed reading your variety of stories/scenarios, Anita! Very creative and very true. I especially liked the mention of Eliah’s button 😉

    • Thanks, Daniele. We can’t change the world by ourselves, but if we all do something, however small, we can create the butterfly effect. Your buttons, your book, your podcast, they are all amazing tools. But I hope that my paper is an eye opener also to those who think they can’t make a difference. Together we can.

      Keep talking and happy ISAD!

  3. I liked how in this article I really got to see how many different people experience stuttering and how it affects each one of them differently. I like that reading this article you could find at least one story you can relate to. At the end of you article you mention ” what can you do”, if you were to give one piece of advice to a future SLP what would one of the biggest things to teach someone who may not be familiar with stuttering?

    • Thanks for your kind reply, Ava. As stuttering is still the black sheep of disabilities, there are still so many false rumours, kids still get bullied and it the media still thinks it’s ok to project stuttering as something funny and ok to mock, it’s incredibly important to raise awareness. And we all can do something to raise awareness, however small. For that we have to communicate and listen, teach and learn, as we’re all a piece of the puzzle.

      And the answer to your question would be just that: listen, learn, teach and don’t just go by te book. You, as an SLP, have the knowledge on how the speech system works. Me, as a PWS, am an expert on my own stutter. As soon as we share what we know, we might come up with solutions that are not to be put in one box. Listen to your client, not just to his speech, but to what he’s actually saying, and not saying. Stuttering is so much more than speech and as such, so for that client you meet today maybe plain and simple speech training is the thing. For the next one, stuttering itself might not be the hardest part, but the social problems that come with it. For one the people around him can be the problem, the other might have the greatest support group at home/school/work, but need self confidence. One might benefit from breathing exercises, yoga, Mindfulness, the other might benefit from Speaking Circles / Toastmasters to get that extra push. Some people need one-on-one therapy, others benefit from group therapy. For some having a parents in the therapy room is helpful, for others a close friend might be the key to inspiration to do the tough exercises. No two pws are the same, so think out of the box. And trust the client to have some things to teach you as well. 🙂 Together you can find the answers.

      You visiting the online confernce, and asking an important question like this, shows you’re going to be an amazing SLP!

      Happy ISAD and keep talking!

  4. Thank you for your paper to encourage PWS teachable moments to others and to create change in how general public views stuttering.

    Kindly,
    Michael

    • Thanks, Michael, for giving birth to this beautiful baby called ISAD. Together we can create the butterfly effect.

      Happy ISAD and keep tallking!

  5. Thank you for posting these little snapshots! They’re all so unique and realistic. As a graduate student studying speech-language pathology and learning about stuttering, I enjoy learning about how stuttering impacts individuals in their every day life and learning beyond the physicality of stuttering. Reading these stories is such a heartwarming experience because it’s a good reminder that there are many positive outcomes people who stutter encounter. I like how a lot of these stories were about reaching out and connecting to other people who stutter and about educating those who are unfamiliar with stuttering. I connected with the story about Lynn, the SLP. I hope I can get involved and be as impactful to my clients as she was when I am a future SLP!

    Thanks again for sharing!
    -Kelly

    • Thanks for your thoughtful reply, Kelly. All of the examples are from my own experience being a PWS and having been active within the stuttering world for over 25 years. Yes, you too are an important piece of the puzzle. You can not only help your clients by teaching them techniques, you can tell them about the self help groups, (you can even join!), you can include parents, friends and other family members in therapy, you can help your clients to explain what stuttering is all about to their class mates and teachers, leave broschures, plan activities for the ISAD together with the self-help group nearby, and if there is none, maybe help them to start up one. You can make a difference!

      Happy ISAD and Keep talking!

  6. Thank you for sharing such great real-life stories, Anita! It is nice to hear so many positive outcomes for people who stutter. As a student studying stuttering in graduate school to be a speech-language pathologist, I feel that small stories like this could be helpful in counseling people who stutter that I may encounter for treatment in the future. The simplicity of each of the stories provides real-life positive outcomes that anyone can relate to. Your post is truly inspiring to me as a future professional!

    Thanks for sharing! -Kaylee

    • Thanks Kaylee. There is so much positive about stuttering, but it can be hard to see it, as speech and the way people react to it can seem so hopeless some days. And that’s where you get in. 🙂

      I’d like to copy my reply to Kelly in yours as well. Kelly. All of the examples are from my own experience being a PWS and having been active within the stuttering world for over 25 years. Yes, you too are an important piece of the puzzle. You can not only help your clients by teaching them techniques, you can tell them about the self help groups, (you can even join!), you can include parents, friends and other family members in therapy, you can help your clients to explain what stuttering is all about to their class mates and teachers, leave broschures, plan activities for the ISAD together with the self-help group nearby, and if there is none, maybe help them to start up one. You can make a difference!

      I hope you can help us to turn the coin and see that, yes, we do something different,that doesn’t mean we’re doing something wrong. Years ago wearing glasses was shameful. Today it’s fashion. I ws the odd one out, the lazy one, when I was one of the first to buy a suitcase on wheels. Instead I was a pioneer! 🙂 We do something that is truly hard, every day, all day. Yet we do it. Does that sound weak? No that makes us super heroes!!! 🙂 If you want to learn more about my journey from being bullied and suicidal to being an international keynote speaker, THANKS to my stutter, check out my papers from previous ISAD online conferences. Sure I stutter. What are you good at? 🙂

      Your comment shows you’re going to be a great SLP.

      Happy ISAD and Keep talking!

  7. I enjoyed reading all the different experiences that you have shared! It is great to see all the different perspectives of individuals who stutter. I love seeing all the positive outcomes these individuals are encountering. I like how a lot of these stories were about being surrounded or reaching out to other people who stutter, letting people know that they are not alone! As a future SLP, I plan on helping my future clients find others who stutter and help build their support system as much as I can. I enjoyed reading Lynn’s story about how she not only provides therapy in the therapy room but supports her clients outside of therapy by attending events and meetings. I hope to make a positive impact on my future client’s life and support them as much as possible inside the therapy room and outside of therapy.

    • Thanks Elizabeth. There is so much positive about stuttering, but it can be hard to see it, as speech and the way people react to it can seem so hopeless some days. And that’s where you get in. 🙂
      I’d like to copy my reply to Kelly in yours as well. Kelly. All of the examples are from my own experience being a PWS and having been active within the stuttering world for over 25 years. Yes, you too are an important piece of the puzzle. You can not only help your clients by teaching them techniques, you can tell them about the self help groups, (you can even join!), you can include parents, friends and other family members in therapy, you can help your clients to explain what stuttering is all about to their class mates and teachers, leave broschures, plan activities for the ISAD together with the self-help group nearby, and if there is none, maybe help them to start up one. You can make a difference!
      I hope you can help us to turn the coin and see that, yes, we do something different,that doesn’t mean we’re doing something wrong. Years ago wearing glasses was shameful. Today it’s fashion. I ws the odd one out, the lazy one, when I was one of the first to buy a suitcase on wheels. Instead I was a pioneer! 🙂 We do something that is truly hard, every day, all day. Yet we do it. Does that sound weak? No that makes us super heroes!!! 🙂 If you want to learn more about my journey from being bullied and suicidal to being an international keynote speaker, THANKS to my stutter, check out my papers from previous ISAD online conferences. Sure I stutter. What are you good at? 🙂

      Your comment shows you’re going to be a great SLP.

      Happy ISAD and Keep talking!

  8. Hello Anita,

    I really enjoyed your post. The creativity allowed for many perspectives in understanding the importance of stuttering awareness. Stuttering awareness can help people accomplish so many things whether they are a PWS, a parent of a CWS, or an SLP. As a future SLP, I see a theme of commitment and support that is necessary when working with our clients.

    Thanks for an insightful post,
    Karyn

    • Thanks for your comments, Karyn. If we want the world to understand stuttering, we need to start talking. And asking questions. If we break the taboos around stuttering, people will understand that stuttering is simply another way of speaking. We can teach people how they can help. And we can show children who stutter that they are Super Heroes, doing something that is hard and freightful, but doing it anyway! You, as an SLP, are a very important cog in that wheel. Please read my reply to Elizabeth on how YOU can make a difference!

      Happy ISAD and keep talking!

  9. Thank you for sharing all these wonderful real-life stories about PWS. I also love how you make stuttering a positive aspect in your life. They say confidence is key, and you are the epitome of this. I am studying speech-language pathology and we are learning how important it is to advocate for PWS. I attended a NSA meeting and I was so thankful to be able to learn more about stuttering form the perspective of the PWS. So many people are mis-informed or un-informed about stuttering and it is awesome to know that there are people like you to change this. As a future clinician I aim to educate PWS and their family about stuttering and their rights. I also hope to build their confidence and perception about their stuttering and encourage them to make connections with other PWS.

    I noticed you had a stuttering consultant company, on top of your many other wonderful accomplishments, and I was wondering if you had any advice for a future SLP or if there was one thing that people should know when working with PWS what would it be?

    Thank you for your insight,
    Brittney

    • Thanks Brittney Lee for your thoughtful comments. I’ve had a tough journey myself. Being bullied by teachers and students, not accepted at home, abuse, suicidal, until I found out I was not alone at the age of 27! (More about my journey in previous ISAD online conference or browse for my name.) I then promised myself to become the face and the voice of PWS, locally, nationally, with inspiring children and young people who stutter being my main goal. I was told not to study, so I became a teacher. I was told not to study languages, as I wouldn’t go anywhere anyway, so I became an international keynote speaker.

      I’m so pleased to read you’re going to the NSA conference, as that’s where we, SLPs and PWS, are all the same. We laugh together, cry together, share together, and inspire each other to reach new levels and find new ways. Also this ISAD online conference is the perfect place for PWS and SLPs to meet and ask each other questions you wouldn’t ask in the therapy room.

      I’m also very please to read you want to do more than just helping your clients to find a better flow, and want to educate about rights (parents often have no clue their children have rights!), help them to find the Super Heroes within themselves (we do things that are scary and hard, yet still we do them!) and guide them to the NSA, FRIENDS and other forums where PWS and parents to CWS meet.

      In all my replies to all my ISAD papers there’s always the same advice I’d like to give SLP students: There is no one-size-fits-all. Listen, learn, experiment (wisely) and don’t just go by te book. You, as an SLP, have the knowledge on how the speech system works. Me, as a PWS, am an expert on my own stutter. As soon as we share what we know, we might come up with solutions together that are not to be put in one box. Listen to your client, not just to his speech, but to what he’s actually saying, and not saying. Stuttering is so much more than speech and as such, so for that client you meet today maybe plain and simple speech training is the thing. For the next one, stuttering itself might not be the hardest part, but the social problems that come with it. For one the people around him can be the problem, the other might have the greatest support group at home/school/work, but need self confidence. One might benefit from breathing exercises, yoga, Mindfulness, the other might benefit from Speaking Circles / Toastmasters to get that extra push. Some people need one-on-one therapy, others benefit from group therapy. For some having a parents in the therapy room is helpful, for others a close friend might be the key to inspiration to do the tough exercises. No two pws are the same, so think out of the box. And trust the client to have some things to teach you as well. 🙂 Together you can find the answers.

      Your reply shows you’re going to be an amazing SLP and I thank you for that.

      Happy ISAD and keep talking!

  10. I loved each and every one of these short snapshots into PWS’s lives. I really enjoyed how you truly portrayed the individual differences in each person’s story. One thing that I will take away from these short stories is how to look at a person who stutters as an INDIVIDUAL and design my therapy sessions around them and their unique differences. Also, it was great to be reminded about how connection between people who are experiencing similar situations can be so beneficial, whether it be a PWS, parents who experience guilt, siblings…etc, having opportunities to connect with others is very valuable.

    • I really enjoyed this piece and also realized the importance of individualizing therapy. Reading about each experience showed how vastly different each PWS is. One technique may fit perfectly with one client but be a disaster with the next. I hope to one day be a competent SLP that provides therapy tailored to each client. Thank you for sharing these experiences!

  11. Anita,
    This was great to read as it really helped me realize 1) just how much stuttering can interfere with people’s lives and 2) how important it is to take time to come to terms with your stutter.
    I think it can be all too easy for speech pathologists to focus on overt aspects of stuttering. But you reminded me of how crucial it is to start therapy by addressing the impact that stuttering is having on a person’s every-day life.
    Thank you for writing this in such a beautiful way. Your message came across loud and clear, but you did it in such a touching and quietly powerful way.
    Thank you.

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