ELSA – A very special week. No, an indescribably beautiful week. No …

mistyAbout the author:  My name is Misty van de Mortel from the Netherlands, 20 years old and a student. Always learning about the most interesting thing in life, communication. I study Speech-Language Pathology and Audiology at the University of Leuven (Belgium). I have stuttered for as long as I can remember. Sometimes my speech seems to be fluent, but in recent years I learned that fluency isn’t my goal; communicating with other people is way more important. This summer (2014) I was a participant of the ELSA Youth Meeting (European League of Stuttering Associations), a wonderful experience.

It is easy to write or say the ELSA (European League of Stuttering Associations) Youth Meeting 2014 was the best week of my life. However explaining why is a lot harder. It is almost as difficult as saying your name fluently during a round of introductions. Or as difficult as ordering a b … b … b .. bun with b… .b … .b … brie at the b … b … bakery.

The b that is above often causes me to stutter. Stuttering was actually the only thing I was sure about beforehand. The ELSA YM would be a week with a lot of stuttering (and hopefully with nice people and interesting topics).

Challenges are there to be taken on. I will try to write down what was so special about a week with people who stutter from Europe (and Israel). Put them together in a meeting at a converted farmhouse in the Dutch village of Loosbroek and many special moments arise.

Listening

First, the fact that everyone had a stutter made the week special. You could expect stuttering from everyone. From the cooks when they told us what we were going to eat to the workshop leaders and the ‘camp mom’ Anita, when she sat at the table next to you. Stuttering was the norm, therefore it soon became much less difficult to listen to it. Everyone had time for each other and watched one another’s faces carefully for signs of possible stutters. I think it was great that everyone listened to each other. Even if someone wanted to take their turn to speak but stuttered on the first word. In contrast, when I was back in the ‘normal’ world, I found it difficult to have to fight for my turn when the first word was not fluent. The fact that I was back to needing four attempts to ask a question in a group (of fluent speaking people), made me realise that the patience and willingness to listen during the ELSA YM was special. However my self-confidence grew so much during the week that I actually took the four attempts and I did not let the stutter stop me.

Interesting Workshops

Second, all kinds of workshops and lectures were given with opportunities to try and ask many questions – good practice. We were introduced to public speaking; how to be assertive vs. the passive attitude we often have; the rights of people who stutter; and how to run a stuttering association. With all this new information, we worked on a fictional project: setting up our own youth group for people who stutter. In between there were also games workshops, social activities, movies and breaks to chat and to take in the busy programme. Personally I thought everything was interesting so I always looked forward to the next part of the programme. At the workshop on assertiveness in particular, I kept writing more and more. I realized that I too behave more passively than I’d like to. During the week I noticed some progress towards the assertive Misty. Realizing that you do something is often halfway to finding a solution.

The Safe Environment

Third, stutterers rule number one: do not put people who stutter in front of a group for a speech. Sounds logical. You would think that most people who stutter do not find it fun when you ask them to speak before a group. However the environment during the ELSA YM was so safe that almost everyone got up voluntarily in front of the group. At the beginning of the week I think that was very difficult, what’s more for me the strange English language raised the bar even higher. During the week I felt the bar was lowered and by the end of the week I realised that the sweaty hands were gone. When the workshop leader asked me to stand up in front of the group, I was not fully relaxed but the ‘help-I-want-to-run-away-very-quickly’ feeling had disappeared like snow in the sun.

Stuttering

Fourth, I’ve already written about the English language as the official language. For me English and stuttering always come together. And I mean I stutter ten times more than usual (or maybe thirty times more). Luckily I was not the only one for whom it was like that. Together we stuttered a lot! Because it was the norm, nobody cared that much about stuttering. I heard stutters of all shapes and sizes but no one made ​​an issue of that. We had the time. Just having to put no effort into speaking fluently was great! I didn’t know that this could feel so good. I think that it is clear that this makes the week special.

The ‘Sect’

Fifth, with participants from sixteen different countries we were one big family. Anyone could have a chat with anyone else and words in different languages ​​were exchanged. Also, cooperation in smaller groups went well. Gradually more personal stories came up and that strengthened the attachment. The only word that I believe in this context to be correct is a ‘sect’. A sect whose faith is: “I ​​stutter. So what?” This solidarity resulted in nobody wanting to leave one another. The parties kept going on later and later and whilst saying goodbye, we were fighting against tears that we could not all keep in.

Time Flew

Sixth, it was really special that time flew. As I said, we had a busy schedule with lots of fun activities. Here I have to mention that I normally cannot handle all the fuss that well. Usually I long for my own bed and a quiet environment. In contrast to what I expected, time flew for me as well, which I regretted terribly when I suddenly realised it was already Thursday, the last day. Why was this special week not seven days longer?

Facebook

Seventh, after a long journey home, the first thing that everyone did was share on Facebook how fantastic the week had been. I wrote on Facebook that I had learnt a lot in the last week and that I had met special people. One of the other participants wrote to me that she filled the emptiness she felt, from missing everything and everybody, with the messages that appeared online. That was, in my opinion, perfectly described. I am still doing that after a week. Is there anything new about the week posted on Facebook? What beautiful memories will come up with the new photos? Is there another new message from one of those lovely participants?

Trying in Vain

With these seven reasons I have tried in vain to describe the ELSA Youth Meeting 2014. In vain because it was more special than words can express; in vain because it was more special than you can possibly imagine; and in vain because it was better than anything you can imagine. I simply cannot explain why the atmosphere of that week touched me that much. I cannot explain how much good it has done for the confidence of all those people who stutter but I can add – as a final point – it has broadened my world. Literally and figuratively.

I’ve seen how powerful people can be; how much stuttering can unfortunately ruin but also how many beautiful experiences it can provide; how stuttering can drive people to extremes in positive and negative ways; and how stuttering can connect people. Participating in the ELSA YM is one of the best choices I’ve ever made. Now the meeting is over, I hope to connect with other participants, with other people who stutter, and with people who are fluent. Who knows, some day it might be possible to put other young people who stutter in touch with each other – a good plan. Assertiveness suits me better than that extremely passive attitude. I stutter, so what?! After the week I pinned the badge with that slogan proudly on my bag. No more hiding. Challenges are there to be taken on.

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Comments

ELSA – A very special week. No, an indescribably beautiful week. No … — 30 Comments

  1. Hi Misty,

    I really loved your article, especially the last two paragraphs they were very touching. Being a former ELSA participant, I know what ELSA is like and what it can do. You leave more empowered in yourself than ever before to live your life… but also kinda heartbroken by the fact you are leaving. Challenges are there to be taken on! I am interested to hear how they are going? How did people respond to you wearing the badge?

    Best wishes,

    Patrick

    • Hi Patrick,
      Thank you very much for your touching words. It’s true.
      My challenges are going really well. Last week I mentioned that I had asked all my questions during a internship day (instead of being quiet and asking nothing). I was happy with that. And there is a new voluntary job. I love to do the work there and off course there are more assertive plans for the next year. I really believe that I can make them happen. Did the ELSA YM changed that much for you? I’m thinking about and experiencing what it changed almost every day.

      I have never had a reaction when people see the badge but I am still wearing it, so if people will respond, I will tell them about ELSA and stuttering.

      Best wishes,
      Misty

  2. Misty,

    I enjoyed reading your post. I also think it’s great that attending ELSA YM has transformed your passive attitude into an assertive attitude. In what ways do you think this change in attitude was possible?

    • Hey Stefanie,

      Sorry that it took that long to answer your question. I think the change was possible because I saw how much pws can reach, how good they can express himself without talking fluent and most of all because I saw that it is okay to stutter. I don’t have to pretend that I speak fluent and I was that passive because trying to be fluent takes so much energy!
      Is that a answer on your question?

      Best wishes,
      Misty

  3. Misty,

    Thank you for sharing this positive experience! It seems very empowering in many ways.

    I am currently a part of a research group who is exploring the dynamics of support groups in stuttering. We have found common themes among the subjects interviewed that their group experiences have been of much help to them, much like the safe environment you had explained above. I am curious to know if you are involved in a stuttering support group or have thought about getting involved in one?

    Thank you,
    Megan

    • Hey Megan,

      I was never in a stuttering support group. I think I never was because I thought stuttering didn’t affect me that much. I thought I just had to ‘survive’ in the fluent speaking world. After the ELSA YM I know that that wasn’t true. It is good to have a ‘stuttering world’ besides the fluent speaking one.

      I am curious to your research. Can you maybe tell me a bit more about it? Is that advantage for all ages?

      Best wishes,
      Misty

  4. I am also studying speech-language pathology! I was initially intrigued by your article because we are learning that communicating effectively with other people is a more functional goal than being fluent. Even people who are “fluent” have many disfluencies! You have really opened my eyes to how powerful people are and to how stuttering can bring people together. I am so happy that you wear your badge with pride and have chosen to be more assertive rather than passive. How is this working better for you? I would like to refer you to another article I read on ISAD – “Be Memorable” by Pamela Mertz. She also talks about embracing your differences and never apologizing for being who you are. She points out that she feels she is lucky to be a person who stutters because she is able to travel, meet new people, and stand out from everyone else. Everyone has differences, it’s how you embrace them that makes you unique and memorable! Your have such meaningful words, especially in the last two paragraphs. Thank you for sharing them with us!

    • You’re true. Even “fluent people” have many disfluencies. It is important for everyone to know that they may be different but aren’t judged for that. It is something I will take with me in every part of my study and hopefully in my (or our) future work.
      If you don’t think about talking fluent it is easier to talk. The talk of Pamela Mertz is wonderful. She really shows that it is possible not to hide yourself, you may be memorable. It’s exactly how it is.
      I’m glad that I could tell you a bit about my experiences and I’m curious to yours. How do you think the students around you think about ‘being different and powerful at the same time’? Most of my courses are focussed on changing the ‘problem’ instead of accepting things how they are. I think, sometimes you have to do that.

  5. Hello Misty!
    Thank you for sharing your incredible experience about the ELSA Youth Meeting. I am overcome by the strength and confidence that you have! I know how tough it can be to be put in a social situation, especially if you are not fully comfortable. New experiences, especially confrences, always make me nervous! However, I applaud your strength to “step out of the box” and am happy to hear that the ELSA YM was an amazing experience for you. I hope that this is just the start of more amazing communication experiences for you!!
    I do have a couple of questions regarding your life and life after ELSA. After leaving ELSA, what techniques or thoughts from the conference did you carry over to your professional and personal life? Is there anything in particular that you have studied in the Speech-Language Pathology program that you have found useful with your own disfluency? I am also studying to become a Speech-Language Pathologist. Do you have any suggestions for working with children and adults who are disfluent?
    Best-
    Kristin

    • Hey Kristin,
      In my study (professional life) I use the presentation skills that we learned and I am able to talk more with fellow students. The assertive attitude helps me to arrange things I really want. In my personal life, I think a lot of de powerful strength that I got that week and that helps me through difficult situations.
      I can’t use that much from what I learned that is useful with my own disfluency.. That’s because I haven’t had the subject about disfluent speech (I will get that subject at the end of this year and I am really curious!!). Because of that I haven’t that much suggestions. The only thing I can add about that is that my study is really focussed on remedying the problem. In my opinion it is really important to work on acceptance as well. Focussing on the whole person and their life can give people a lot more tools to handle difficult situations. For example the ELSA YM. There were no ‘lessons’ about fluency but only lectures about confidence and public speaking. That gives me so much more than the fluency techniques.

      Best wishes,
      Misty

  6. Hi Misty,

    I loved reading about your experiences at the ELSA YM. I am a speech-language pathology graduate student and am currently in a fluency class. I am trying to gain as much knowledge as possible from people who have experienced things that seem to work. Was the accepting atmosphere what made the week comfortable and relaxing? And also, what is going to help you in the coming days and months to continue to be assertive?

    Thank you so much for sharing,
    Emily

    • Hey Emily,

      Yes, the accepting atmosphere was what made the week that comfortable. Because nobody was the stuttering exception like we are in normal life. It was also really comfortable that everybody was watching each others face and when they saw that you stuttered on the first word of your sentence, they waited and didn’t take your turn.
      Thinking back of the confidence I had in my speech during the meeting really helps me to keep that assertive attitude. I love thinking back about that wonderful week. I still wear the badge and wristband to remember myself of the positive thinking and things I can reach. That helps my in other situation.

      Thank you very much for your reaction. I am curious about what you learned in the fluency class your writing about. What form that class is for you the most important?

      Best Wishes,
      Misty

      • Thank you for your reply Misty. I have a great fluency professor who in fact stutters himself. He has really taught us about how important helping our clients have that positive attitude so that they realize that their stuttering doesn’t negatively define them as a person but instead makes them who they are and we are just their to help in that acceptance. Another important idea my professor has also taught us about is self-discovery. As speech therapist, its easy for us to tell people what to do and how to do it in order to communicate more effectively, however, standing back and just giving support to a PWS can have better results and help the client discover what works best for them which is empowering for them. I hope this answered your question. If not, I will be glad to discuss further.

  7. Hello Misty,

    I enjoyed reading your article and learning more about the ELSA Youth Meeting. Before reading this article I did not know anything about the ELSA Youth Meeting. It is awesome that people from all over came and participated. When you first stated that everyone had a stutter, I only assumed people who were attending camp stuttered. To have everyone including the leaders, cooks, and camp mom stutter is very powerful. I enjoyed reading about your journey.

    Alissa

    • Thank you Alissa. That everyone stuttered really was that powerful and it definitely added something extra to the meeting.
      Misty

  8. Hello Misty,

    Thank you for your article, I enjoyed reading it and getting even a small glimpse into the world of pws. I am a speech-language pathology graduate student learning more about pws. You said that your focus is communication not simply fluency but I was wondering if you use any fluency strategies? Also, do you feel like you will teach your clients fluency strategies after you become a speech-language pathologist? Since I am a fluent speaker I would love to hear your opinion on these strategies as a pws and a future speech-language pathologist.

    • Hey Rebekah,
      Thank you for your kind reaction. I don’t use that much fluency strategies. I know them (because I have had speech therapy till two years ago) but it don’t give me that much more. It take a lot of energy to use them. That also is because I can speak almost fluent so most of the time it is not necessary.
      I haven’t had the lessons about fluency disorders but I am really curious to them. After the lessons I can form a more complete opinion. Now I only can say that there is so much more than fluency strategies and for me that other side was important (I focussed on confidence and techniques at the therapy and only on confidence at the meeting). For other people it can be really important to have those strategies so I think I will teach people the strategies in combination with focussing on acceptance and the person in their life (with and without strategies).
      Is that what you meant? I am really curious to your opinion about this!
      Best wishes,
      Misty

  9. Hi Misty,

    I am glad you broke down the ELSA Youth Meeting into different categories. Prior to reading your article, I did not know the layout of this meeting. It must have been a great experience to meet other people who stutter as well as to now be able to connect with them through Facebook.
    In your bio section, you said that you are a speech-language pathology student. Are you taking classes on fluency or stuttering? If so, have you found that they have helped you with your stuttering in any way? Do you ever find it difficult to be in your speech-language pathology program being a person who stutters?
    Thanks!

    • Hey,
      I haven’t had the classes jet. But I am really looking forward to the lessons about fluency disorders. (I will get them at the end of this year). I expect that I can’t use that much for my own fluency because I don’t stutter that much but maybe I am wrong. In any case, I am curious to everything that we will learn about it and about forming my own opinion with the knowledge from the two sides.

  10. Hi Misty,

    You don’t know how much your article, as well as the other articles about the ELSA Youth Meeting, does to me. The feeling you describe is exactly how the week should be experienced and what we aim for in setting up the program, selecting location, searching for social events and last but not least the volunteers!
    Also I’m glad we convinced you to participate in this meeting. I believe you had your doubts in the beginning… ;).
    In another article on this conference I noticed the meeting to be called a ‘Stammering Bubble’ and now the world ‘Sect’ even is used. Nice to see nobody uses the term ‘boring’ or ‘uninteresting’ 😉
    Looking forward meeting you again and have a good chat about life after the ELSA meeting.

    Richard Bourgondiën

    • Hi Richard,

      Thank you very much for your reaction. It is special to read what I can cause with only writing about my experiences. It was a wonderful week and the organization was definitely successful.
      Yes, I had my doubts but afterwards -like I wrote in the article- it was one of the best choices I ever made.
      I hope that you will organize this meeting for more young people because everyone deserves this special experience.
      I am also looking forward to meet you again!

      Best wishes,
      Misty

  11. Hi Misty – thank you for sharing your experiences and for breaking them down into the different aspects that you did.
    I read in your bio that you’re no longer looking for fluency as a goal, rather that you’re really more interested in communicating with others. How do you plan to carry that over to your work with future clients when you finish studying to become a SLP?
    Also, wondering if you’d be interested in being a guest on my podcast “Women Who Stutter: Our Stories?” I’d love for you to share your story with my listeners, who are international. If you’d be interested, please feel free to email me at pamela.mertz@gmail.com

    -Pam

    • Hi Pam,

      I hope that during SLT I can always keep in mind that acceptance is really important. It is not everything off course; techniques and practicing on the speech is often the fist goal of the SLP but there is more. How I can do that exactly, I am not sure about. I don’t have any experience at this moment (first internship will be next year) but my own knowledge about stuttering and communication will always be there, I can’t turn it off and I hope that I can use it to imagine the point of view of the client in the best possible way.

      I have heard some of your podcast and feel honored you ask me. I will think about your proposition and send you an email when I am sure. Thank you!
      Misty

  12. Misty,

    Your description of the ELSA week was very beautiful and eye-opening. It was eye-opening to the importance and power that a conference like that can have on a person. Though I am not a person who stutters, I am a person who struggles between the passive and assertive voices inside my head. I often find myself playing the passive role, when there is a side of me that wants to “shout out.” I think that getting together with other people who have similar stories or not so similar is very helpful and therapeutic. Are you keeping in touch with the friends you made at the ELSA week? I hope so — at least we have facebook, I bet that helps to stay connected!

    I hope that although ELSA was only a week long, you will take the feelings and sentiments that you garnered there with you for the rest of your life. And I think it is so cool that part of the ELSA week was educating you all on how to start up groups on your own. I think this could be very beneficial to some youth in your community who weren’t able to go to the ELSA week or didn’t know about it.

    I also admire the fact that you are studying to become a speech language pathologist! How do you think your history with stuttering will help you in your future as a speech language pathologist?

    Thank you so much for your story,
    Marcella

    • Hi Marcella,

      Thank you for your reaction. Yes, I still have contact with some other participants. With Facebook that’s not difficult to stay connected.
      Like I said to Pam, it is difficult to predict how my own experiences will affect me as a SLP. Till now I haven’t had any internship but I hope that I can use the knowledge I gained during ELSA, before and after, to imagine the point of view of the client in the best possible way. I believe it can also be a disadvantage but I have to find out in what way that is and how I can try to turn that as positive as possible.

      How do you find the strength to change your passive role to an active? Do you have a way to influence the voices? I think the active and passive role of a PWS isn’t different from a fluent speaker that feels the same even when a SLP will link it to stuttering or another speech problem.

      Thank you for telling me about the way you read my article.
      Misty

  13. Hi Misty,

    My name is Kayla, and I am a graduate student studying speech-language pathology. I enjoyed reading about your ELSA experience and the impact it has had on you. Prior to reading, I was not familiar with ELSA, but your outline and description provided me with some helpful information. I especially loved your ending statement, “Challenges are there to be taken on.” Our field of study is challenging in general. We are constantly pushing ourselves to learn new things and help others in the most beneficial ways. Constant challenges await every speech-language pathologist. As a person who stutters, do you think this career will be additionally challenging for you? Also, do you believe that your experience as a person who stutters will benefit you in anyway as an SLP? What are some goals that you have for yourself as a professional?

    Thank you for your story and your time,
    Kayla Wooten

    • Hi Kayla,
      Have you already worked with PWS? I am curious to your experiences!
      I just tried to answer the questions of Pam and Marcella and your question is like their so difficult to answer. I will have a try.
      Yes I think the career will be additional challenging because of my stutter. But here again, not impossible or too hard; Challenges are there to be taken on. It is more difficult because you have to improve your professionally even when you stutter and we know that the credibility of somebody with a speaking disorder/problem is affected. I hope I can turn that positive through my experiences and make it a benefit. Actually I still don’t know if that is possible. The future will show me if it is or not.
      My goal is to help people with their communication as an SLP of Audiologist, that can be by learning techniques, by working on acceptance or in a different way. My own goal is to stay in my active attitude and make that my comfort zone because I think I only can help other people from that place. I hope that answered your questions a little bit.
      Thank you for reading and reacting.
      Best Wishes,
      Misty

  14. Thank you very much for all the reactions. Through all of you and all the impressive articles I have learned a lot. You challenged me and made me think in different ways about stuttering, ELSA YM and SLP. It was a challenge again. Thank you for leading me through it.

  15. Dear Misty,

    Your description of your experience at ELSA YM was poignant and informative. Especially your discussion of returning to the “normal” world and having to fight for a turn in conversation. So many people take for granted that they will be heard when they speak. As a student clinician, I am still learning about the perspectives of people who stutter.

    Can you provide any advice on how to work with young people who stutter? I am currently working with a very young (preschool age) person who stutters. The parent is extremely worried and anxious and wants to fix his child’s speech. What advice can you give to a clinician who is helping a parent manage their expectations for their child’s ability to speak fluently.

    Thank you,

    Anne

    • Hi Anne,

      I’m not sure if I still can reply, but I will try to answer your question. For me that’s a difficult one. I can’t answer it for the perspective of my study because I haven’t had the course about fluency disorders yet and I am not a professional.
      I can imagine the parent is worried about the speech of the child it would be good not to conclude that the speech will always be influent because there can still change a lot (without ‘fixing’ it). I think the most important is to reassure them.
      I don’t have any general advise for working with young PWS. Maybe it is better to ask a speech therapist with more experience with that target group. I only can tell you that for me, working on acceptance (in a lot of different situations and with different people) helped me more than fluency techniques. But off course that’s for everybody different.
      I’m not sure I answered your question (of even if I can answer your question), if you meant something else or if you have more specific questions you may email me (I think this conference will be closed so we can’t discuss here).

      Misty (misty@vandemortel.eu)