May 31, 2008
A group of Canadian University students visited Samagra for four weeks. One of their Inquiry themes is Disability. They were shown two movies about stammering: 'Unspeakable' and 'Courage to Speak'. They were taken to local schools where they interacted with a group of children with special needs, many dealing with speech issues. They have developed an understanding of the issue and plan to serve such children back home. Before leaving India, they will be giving a brief presentation, among other things, on what they have understood of stammering and related issues.
Samagra is a charitable public trust working in the foothills near Dehradun, both as a place for spiritual sadhana and meaningful social work.
Pictures above, First: the group undertaking a 'trust walk' to experience disability first hand. Second pic: a scene from John Paskievich's 'Unspeakable' – a movie which documents how stammering affects people- deeply and diversely; and ways forward.
May 29, 2008
But by the way, the 3rd Chennai meet at Marina beach is on 7.6.08 and not on 31.5.08. This change is due to heavy holiday crowd at baech...
We just heard from Mr Manimaran, the coordinator for the Chennai group..
The group plans to interact with local media too. Great! We are waiting for pics now!
May 28, 2008
StutterTalk is a website which offers you recordings (free of course) of interesting discussions on stammering as podcasts. Podcast is basically an MP3 file which you can play on your computer, MP3 player etc. Typical size is 20 mb which can take some time to download under Indian conditions. But once you download it, it can be fun listening to it, as if it were a radio broadcast. In cities, the size will not be any problem. Check it out, if you have broad band and some time.
And let us know, what you think of it.. p-p-please!
May 17, 2008
The first list of adult and family workshops for the NSA Parsippany/NYC conference is now available on the NSA website at www.WeStutter.org.
Click here for that listing.
As always, six weeks before the conference, this list is very tentative and subject to change without notice. However it will give you a good feel for what's available at the conference and how you should plan your days.
And looking at the registration numbers, this could easily be the largest conference in NSA history! We're waaaay ahead of where we were this time last year. The Yankee/Mets baseball game is already sold out, and several of the sessions (tours) are nearing capacity. So if you haven't already registered for the conference, it's time to get it in gear and do so IMMEDIATELY!
We hope to see you at the conference in less than six weeks!
972-881-1451 home, 972-489-6169 cell
My home page: http://www.RussHicks.com
NSA home page: http://www.WeStutter.org
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May 16, 2008
The second Chennai meet is to be held on 18.05.2008 from 6.00 to 7.30 PM at marina beach near Gandhi statue. I kindly request every Chennai PWS to attend the meeting and benifit themselves. Dr.Sachin has given a small booklet about stammering. I will give the booklet in the meeting.
Any body can call me to my mobile which is given below.
Mobile: 94450 61999
May 15, 2008
May 14, 2008
Stammering affects 1-2 % of adults and 5-15% of children under 15 yrs. It is commoner in men than women by 4:1 ratio. Medical research has not been able to pinpoint the cause. It seems many reasons could be involved: genetic predisposition and environmental factors. Stammering is present when we repeat syllables (part words) or words with struggle. In many cases it may manifest as an inner struggle associated with talking. Considerable negative emotions & suffering accompany stammering- anxiety, guilt, fear and shame.
There are no known “cures” but speech therapy can help to some extent. Modern speech therapy for stammering is prohibitively costly. So what can help thousands of sufferers across this vast country is self help groups(SHG), accessible & correct information, better social attitudes (acceptance- in homes, schools and workplace) and state interventions. State should provide Delayed Auditory Feedback (DAF- an electronic device that helps fluency) enabled telephones / mobile phones at subsidy to people who stammer (PWS). Speech therapy for children needing it, in schools should be mandatory and free. The media (film & TV) should stop portraying stammering in negative light.
TISA is an association of Indian PWS (people who stammer) from various walks of life, which will be working to promote awareness, research and documentation of relevant issues. It will be promoting self help group movement in India, both in urban as well as rural pockets. SHG movement in the field of stammering is quite old in western countries but is beginning in Asia only now. The reasons are: society and PWS have been reluctant to talk about it because of lack of knowledge and a sense of embarrassment. But times are changing!
Our motto is: L-L-Let's t-talk about it!
"A ship in harbour is safe but that is not what ships were built for" –
William Shedd, 19th Century author
Following resource material was gratefully adapted from a write up from
Michael Sugarman, National Stuttering Project, USA.
This article covers two related and important areas: how to counsel others facing speech issues? Second- how to conduct self help groups. Feel free to translate and adapt to your local situation and give credits to Michael Sugarman, please!
What is peer counseling?
Peer counseling refers to people who stutter helping each other by listening, sharing common experiences. exploring options and giving support. Peer counseling is based on communication, empathy and understanding. People who stutter can provide peer counseling in a variety of settings including one to one or in a self help group.
What happens in a self help group?
When people who stutter meet together in a self help group, it is often helpful to have a peer counselor who can help the group in a variety of ways. Even though self help groups are not meant to be led by anyone, the peer counselor can assist in creating a safe and comfortable environment, giving all members an opportunity to share and helping individuals better communicate with and listen to each other. A peer counselor assists in setting group goals, develops an agenda and keeps the members on track. He or she can also be a resource for referrals to community services and support networks when the support group is unable to handle a difficult issue or an individual member needs more in depth therapy or professional assistance.
How do self help groups and speech therapy work together?
Self help groups are not meant to take the place of speech therapy. While professionals may be able to assist people who stutter in becoming more fluent or developing coping techniques for stuttering, self help groups can provide a safe place where people who stutter are able to share their feelings and know that they are not alone. Self help groups also allow individuals to develop self esteem by helping themselves and others at the same time.
Peer Counseling Skills
Introduction: Each self help group is different. A peer counselor uses each members unique issues and qualities to make every meeting different and interesting. The flavor of the group depends on the personality of the peer counselor as well as its members'. However, there are some basic concepts and experiences that are common to self help groups. These are shared below.
Shared Experiences: Successful self help group involves shared experiences between the peer counselor and the member. A PERSON WHO STUTTERS is the expert on his or her experiences. motivations and feelings. The peer counselor has similar experiences that may help to explore stuttering behavior and personal issues.
Structure: Self Help groups should provide a safe and comfortable opportunity for all members to share ideas and feelings regarding stuttering. Members are encouraged to share their experiences. giving them a better chance to understand each others' feelings and concerns. In order to better facilitate participation. all members must be given an equal opportunity to speak without interruption. Consideration must also be given to the self help group's agenda and keeping on task.
Group Size: The maximum number is more critical than the minimum number for member sharing. FIVE TO SEVEN IS A GOOD SIZE; ten should be the upper limit. Ten members divided by an hour of group time works out to six minutes each--not much time for a member to talk about his or her life. However. even when a member is not sharing there is still much learning taking place. The peer counselor may decide to close the self help group meeting to "X" number of participants. Also. when a new member joins the self help group. the peer counselor must set aside time to inform him or her about the rules of the self help group. including confidentiality.
Peer Counselor's Role: Self help group facilitation is the approach taken which calls upon the peer counselor to follow the members' lead as they address issues. Peer counselor can open. maintain and close discussions, and if necessary, remind members that all must have an equal opportunity to share feelings. Peer counselors can also help members explore feelings and behaviors brought up in self help group discussion more deeply.
Information alone does not lead to behavior change: Behavior change is a complex process. Providing information as the sole or main intervention is generally not sufficient to lead to changed behaviors.
Neutral stance: It is appropriate for peer counselors to take a neutral stance when addressing ambiguous information from members and to maintain a non-judgmental manner when discussing speech therapy or personal behaviors.
Within the structure of the self help group meeting some things are beyond the scope of the peer counselors experience. Peer counselors need to understand this and be confident he or she can refer the member to appropriate resources.
Recognize signals of stress while in the self help group such as feeling uncomfortably involved with a member's problems, over-extending yourself beyond the peer role, feeling hopeless or conversely more powerful in a situation than is realistic or appropriate or taking on commitments for members that are beyond appropriate tasks.
Listening and communication skills make up the major part of good peer counseling. Below are techniques to use which can improve your listening and communication skills and help you deal with problems which might arise in your self help group. The more you practice, the better you will get at peer counseling.
You will want to use open-ended questions to keep group conversation moving and probe deeper into topics and feelings raised by self help group members. A "closed" question can be answered with "yes" or "no" or a simple statement of fact. An open ended question requires other information to be answered.
Closed: "At what age did you first stutter?
Open: "What was going on in your life when you first started stuttering?"
1. Repeating words should be used sparingly This is not actually an active listening technique. Repeating does not give a person who stutters a sense of being listened to.
Person who stutters: "When I'm about to speak I get excited and stutter. It really upsets me."
Peer Counselor: "This just really upsets you."
2. Paraphrasing Saying what the person who stutters has said, using different words.
Person who Stutters: "When I'm about to speak I get excited and stutter. It really upsets me.
Peer Counselor: "It's very distressing."
3. Reflecting: Expanding on the topic, adding in an acknowledgment or exploration of feelings or unstated thoughts.
Person who Stutters: "When I'm about to speak I get excited and stutter. It really upsets me.
Peer Counselor: "Yes, I can see that and I wonder if you might be angry about it, too."
4. Interest: Expressing genuine interest in the circumstances of a person who stutters and inviting further disclosure.
Person who Stutters: "When I'm about to speak I get excited and stutter. It really upsets me."
Peer Counselor: "Help me understand what it is like for you when you go through this experience. Can you give me a picture of what a typical stutter would be for you--how you feel when you start thinking about speaking, what happens once you're aware of these thoughts or "how do you feel upset?"
5. Reframing: Offering an alternative way of looking at a situation, usually one that is more constructive and positive.
Person who Stutters: "When I'm about to speak I get excited and stutter. It really upsets me.
Peer Counselor: "Yes, you're miles ahead of someone who does not have those feelings and isn't willing to be aware of them. And being upset about your stuttering is a good sign because it means your instinct to take care of yourself is really kicking in."
6. Interpretation: Making some inference that has not been clearly expressed by the person who stutters. This is a more advanced skill, best left to trained professional therapists. Additionally. while interpretation is an important technique in therapy, it has less applicability in the self help group. Even skillful peer counselors usually don't know enough to make successful interpretations. Simply, don't analyze the motivations of others.
Person who Stutters: "When I'm about to speak I get excited and stutter. It really upsets me.
Peer Counselor: Perhaps what is really upsetting you is the guilt and shame you feel about stuttering."
7. Process: This skill involves listening. reframing. and expanding what the person who stutters said musing a question.
Person who stutters: "When I'm about to speak I get excited and stutter. It really upsets me."
Peer Counselor:"How come this upsets you?"
Person who stutters: "I feel stupid?"
Peer Counselor: "How come you feel stupid."
Person who stutters: "I really don't know when to start speech therapy?"
Peer Counselor: "You don't quite know how to begin....
Person who stutters: "I don't know if this group is worth it?"
Peer Counselor: "You feel?"
Person who stutters: "I don't know who is good as a speech therapist?"
Peer Counselor: "You're unsure of the kind of speech therapy you want?"
9. Summation. This is a combination of one or more phrases and includes a reflection of feelings. A peer counselor ties together content and feelings and tries to put things in perspective and identifies important trends, conflicts and possible decisions. Peer counselors must be aware of the biggest danger: DISTORTION. Therefore, check periodically with your member for accuracy. Also, be prepared to focus on the positive aspects of the situation and don't feed into the negative aspects.
1. Talk with the person outside of group about your feelings and perception.
2. Discuss options regarding how to maintain a supportive environment.
3. Come to a joint resolution on how each person is an important support to another
Referral: If your feelings are strong and interfering with ability to provide "good" peer counseling and after consultation the situation has not improved. Recommendation: Refer this member to another support group, seek professional assistance or ask members' from the self help group a consensus on the situation.
Let the members lead, and you follow. Check in with members as to how they are feeling or what they want to do next. Remember you are the facilitator not a group leader and do not need to control the conversation. As a peer counselor, ask questions that may increase knowledge of your members' concerns. Go with the flow of the conversation and avoid changing subjects just to fit into the agenda if the conversation is productive.
SELF HELP GROUPS
Suggestion: Self help support groups serve a variety of goals. Some of them are listed below. These can range from providing personal support and encouragement to providing advocacy, education and outreach to your local community. You can work with your group to set its own goals.
Confidentiality: It is essential that what occurs in the group remains in the group. In practice, there are many limitations to confidentiality, both individual and institutional. It is important that both the principle of confidentiality and the realistic limitations be acknowledged.
Commitment to Change: Work in the self help group is often most effective when it includes a commitment to action to improve oneself. Ask: "What can be done to change the situation?" "How can we help each other?" Where can we go from here?"
Meeting formats for self help groups range from loosely structured to more formally structured meetings. The following activities are common to many meetings and can be used as a guide for structuring your self help group.
Formal Opening of Meeting: At the agreed upon time, the meeting should be called to order by the facilitator. A welcoming statement such as, "NSP is dedicated to empowering people who stutter to share through self help in a safe and comfortable environment" should be made.
It often helps if the peer counselor has an activity or discussion topic planned for each meeting. Ideas can come from members or can be taken from the suggestions below. Some of these ideas can be completed in one meeting and others may need to be completed over a series of meetings. If you have other good ideas which have worked in your support group, please share them with TISA (this website).
Goal: Establish group rapport
Activity: Getting to know each other
Name, when or where you were born? What one word describes you best? How do you feel about your stuttering? What do you like about your stuttering or What does your stuttering show you? What bugs you about your stuttering? Ask members if they want to share what they have learned about the other person.
Topic: Stuttering History
Goal: Validate personal experience
Activity: Discuss my social history
Pass out a piece of paper and markers and give members an entire meeting to draw a chronological history of their lives --from when they were born to the present. This is a time line. Beginning with birth, describe some of your memories relating to your stuttering behavior, describing each situation noting on the time line when it occurred. Members share their time line in the group.
Topic: Personal Awareness
Goal: Increase personal awareness
Activity: Discuss my feelings
A. Begin the meeting by asking members to name as many feelings as they can--such as: A time I felt angry was; A time I felt happy was; A time I felt scared was; A time I felt guilty was; and A time I felt was, etc. and members share.
D. Homework assignment: Keep a journal for one week that focuses on how you perceive your stuttering in various situations. For example you might use a chart with the following headings: Day/Time; Situation/Setting; Activity; Reactions of other (5); My thoughts and feelings; and consequences. Have members share their experiences.
Topic: Stuttering Information
Goal: Discuss stuttering therapy
Activity: Group discussion about your experiences in speech therapy
B. Members share their understanding on the causes of stuttering. Use available resources in your community such as the library, another person who stutters, a speech-language pathologist, or your partner.
Goal: Identify how you protect yourself from being hurt
Activity: My other side
Topic: Self Esteem
Goal: Increase self esteem
Activity: Discuss me
A. Ask members to discuss their feelings about the following topics: What is my attitude toward and perception of myself? Of me in this group? What is my attitude toward my stuttering? What do I think of myself as a stutterer?
G. Group members discuss the concept of physical and emotional needs. Ask members to discuss what physical needs he or she may have including, such as food, shelter and clothing. Then discuss what human needs he or she may have in order to be emotionally healthy. These needs can include being loved, giving love, feeling appreciated, and being safe. Ask members to discuss: My own needs-- Met and Unmet.
You will receive a body You may like it or hate it, but it will be yours for the entire period this time around.
You will learn lessons. You are enrolled in a full time informal school called life. Each day in this school you will have the opportunity to learn lessons. You may like the lessons or think them irrelevant and stupid
There are no mistakes, only lessons. Growth is a process of trial and error and experimentation. The "failed" experiments are as much a part of the process as the experiment that ultimately "works".
A lesson is repeated until learned. A lesson will be presented to you in various forms until you have learned it. When you have learned it, you can then go on to the next lesson.
Learning lessons does not end There is no part of life that does not contain its lessons. If you are alive, there are lessons to be learned.
"There" is no better than "here". When your "there" has become a "here" you will simply obtain another "there" that will again look better than "here".
What you make of your life is up to you. You have all the tools and resources you need What you make of them is up to you. The choice is yours.
Your answers lie inside you. The answers to life 's questions lie inside you. All you have to do is look, listen and trust
You will forget all this. 3
Topic. Family Relations
Goal: Increase understanding of family dynamics
Activity: My family relations
A. Pass out a large piece of paper and color markers and ask members to draw expressive faces of each member of their family; partner, children, mother father and siblings. And then next to each face write down your feelings. Members share what they drew and wrote with the group.
B. Pass out a piece of paper and pencil and ask members to write a letter to parents and/or partner describing how they are affected by stuttering and what they need. These letters are not sent. However, the letters are destroyed in a ritualistic fashion. If members want to share their feelings--they can.
Goal: Develop coping skills about your stuttering
Activity: How to take care of me
A. Ask members to discuss as specifically as possible how their stuttering bothers them? Then discuss what strengths they may have developed as a result of stuttering. B. Ask members to role play situations when they did not say meant in order to avoid stuttering. Has anyone been in this type of situation before? Was it difficult or easy to handle? Try to learn to say what you mean. The peer counselor may ask members who agreed to role play to leave the circle to develop a skit for the group. Theatrical props can be used. After the role play members discuss how they can learn to say what they mean.
A. Discuss how stress affects your personal and career life and what activities you do to relieve your stress. Do you consider taking an aerobic exercise class, hiking, challenge yourself in hobbies, social activities or solitary activities? These are just a few. Have each member, who wants to, commit to do something for him/herself to relieve stress during the upcoming week and tell the group what it is.
Topic: Support System
Goal: Increase members support system
Activity: You are not alone
A. Pass out a piece of paper and pencil and make a list of your support system. "Who do I talk to if I have a problem?" "Relapse?" Share your list with the group. Discuss ways members can increase their support network.
Topic: Speaking Circles
Goal: Opportunity to practice speaking in public
Activity: Ask the members to pick up their buddy: anyone whom they trust and enjoy talking to. Let these pairs pick up a slip of paper from a box and go out and sit in a corner. The paper will have a topic to be discussed among the buddies for next 5-7 minutes (what happened on your last birthday party? Or Did you ever fail any exams? How and why? The topics chosen should be able to generate enough emotions and personal response). After the given period, everyone will come back and sit together in a large circle. Now, the pairs will briefly share in the larger group what they had shared earlier in a small group of just two. Their should be little compulsion for people to speak for a certain amount of time. But if someone exceeds 3 minutes upper limit, the facilitator should gently request them to allow sufficient time for others as well.
May 13, 2008
This is a work in progress. If you do not find here what you are looking for, send us an email (firstname.lastname@example.org, email@example.com). Following info has been collected from diverse sources. In particular we wish to acknowledge the following sources:
The Stuttering Homepage (Judith Kuster, Minnesota State University)
British Stammering Association
1. What is Stammering or stuttering?
It is involuntary repetition of part of a word (syllable) while speaking. It is caused by a rare neuro-physiological disorder of the speech nerves in the brain. It is important to understand its ‘involuntary’ and ‘variable’ nature. It may not be present while singing, whispering, reading with others, talking to pets, friends and under a variety of other conditions. On the other hand, it may strike under quite common situations like saying our name, talking over the phone, speaking while being observed, etc. There is considerable variety in its symptoms and factors which lessen or make it worse.
It is one of the truly ubiquitous health disorders. PWS are found in every socio-economic group, culture and region.
2. How many people stammer in India?
Over all, about 1% adults are expected to be PWS. They can be found in any caste, community, ethnic group or region. Therefore their number in India would be at least one crore (i.e. ten million). Some Indian therapists claim that their number could even be more- almost 3%. But due to cultural stigma and social attitudes, they may neither seek help nor accept their problem openly. It is more common among men than women by 4 to 1. About half of PWS may have a close relative with the same disorder.
3. How many hildren suffer from stammering?
Between 5% and 15% of children stutter at some point in childhood. These are ‘normal dysfluencies’ of the growing child. Many children recover spontaneously. Some children may persist with this manner of speaking due to certain stress in the environment - birth of a sibling or other stresses of the early family life. This stress could also be due to demands made by “Grammar”, which a child is just beginning to learn at this stage. Genetics also play a role, since about half of such children may have a PWS as a close relative. The sex ratio among children who stammer is equal but gradually becomes 4 men to 1 woman in the adult age population.
4. Why do people stammer?
It is simplistic (wrong) to believe that it is just a ‘bad habit’. There is an actual ‘neurological’ disorder which makes uttering some sounds (often consonants) or transition from one sound (syllable) to another difficult. When the nerve impulse for the next syllable fails to come from the brain, the speech system repeats the last sound, until it arrives. Sometimes no sound or air may escape- a block. PWS often describe it as locking up of their jaw, tongue or mouth. This leads to considerable struggle behavior- as if we are trying to force the word out of our mouths. Eye blinking, grimace, head nodding or movements of other parts of body may be associated with this struggle. At one time, we may have used it to get out of this ‘block’, and then they become unconscious secondary behavior.
5. How does stammering affect PWS?
A common problem faced by young PWS is job interviews. Stress is well known to increase the speech difficulties. The interviewers may mistake this for lack of confidence, lack of knowledge, nervousness or a chronic communication disorder. They may not realize that the same person may speak normally on the job.
The other problem young PWS may face is the difficulty to communicate their feelings, inner thoughts and develop enduring relationships, particularly with opposite sex. Since strong emotions make stammering worse, PWS may find expressing anger verbally difficult. Often such emotions are buried deep and result in feelings of self loathing, unworthiness and deep dissatisfaction. Without our knowing, these feelings may affect our attitudes, our view of the world, our choices of pastimes, career, relationships etc.
On the other hand, some PWS grow into diverse directions: they may learn diverse languages, become writers, singers, actors, IT professionals, doctors, teachers etc. They may even attribute their success to their stammer and consider it as a blessing in disguise. But many PWS are not able to acquire higher education. This is because educational institutions have poor understanding of this neurological condition. Few schools have a speech therapist on their faculty.
As they grow older, PWS may develop better insights into their problems. They may even become more accepting of their issues and problems.
6. Why do people react to stammering as they do?
Studies show that people (both PWS and those who speak ‘normally’) experience stress (raised BP, heart rate etc.) when they hear someone stammering. Studies also show that PWS experience considerable stress when they feel they have to be ‘fluent’. This is a dilemma. Who should have the onus of coping with their stress?
Ideally, the audience should work on their attitudes by developing more acceptance to the diversity we may have in our speech. The PWS also need to work on their overall communication and not worry so much about ‘fluency’. Both need to be aware of their sub/unconscious reactions (like looking away, shifting uncomfortably, etc), in order to be able to deal with them successfully.
How do I know if my child will grow out of her or his stammering?
As mentioned earlier, normal dysfluencies are a part of a child’s speech learning process. But the old practice of ‘wait and watch’ is no longer recommended. The following considerations may call for an early consultation with a speech therapist.
Does the child have a PWS as a close relative (uncle, cousin, father, etc)?
The child repeats sounds more than twice, li-li-li-li-like this. Tension and struggle may be evident in the facial muscles, especially around the mouth.
The pitch of the voice may rise with repetitions, and occasionally the child will experience a “block”—no airflow or voice for several seconds.
Normal dysfluencies come and go; but in this case, these are frequent and persistent.
If the child stutters on more than 10% of his speech, stutters with considerable effort and tension, or avoids stuttering by changing words and using extra sounds to get started, she or he will profit from having therapy with a specialist in stuttering. Complete blocks of speech are more common than repetitions or prolongations. Dysfluencies tend to be present in most speaking situations in such cases.
7. What can I do if my child stammers?
While direct therapy with the child will be conducted by the therapist, the family has a vital role in helping the child gain the new skills, habits and attitudes:
Talk about it openly, so that your child feels comfortable about this issue. Try not to be upset or annoyed when stuttering increases. Your child is doing her best as she copes with learning many new skills all at the same time. Your patient, accepting attitude will help her.
When you and others talk to her, talk in a slow, relaxed fashion.
- Use small, simple sentences. Speak slowly and clearly.
- Give a gap of a few seconds before you answer her questions
- Let there be small silent gaps between your sentences when you talk to her
- Never interrupt her when she is saying something; let her finish, wait for 2 seconds and then ask your question. Don’t ask too many questions.
- Never force her to say or talk when she does not want to: never force her to recite poems for a guest; if she does it on her own, welcome it; praise her. But never force her.
- Never interrupt her to say: Slow down; First think what you want to say; Take a deep breath, etc. These suggestions don’t help. These only make a child feel bad and ashamed.
- If you don’t understand what she says, say- ‘Sorry, what did you say?’ But don’t react negatively, either in words or through facial expression and body language
- Encourage her to talk in a louder voice.
- Slow and relaxed speech can be the most effective when combined with some time each day for the child to have one parent’s undivided attention. Set aside a few minutes at a regular time when you are doing nothing else but listening to your child talk about whatever is on her mind.
- Increase the situations in which your child is most fluent. If your child is more fluent during bedtime stories, extend this time by reading one more book at bedtime or provide other reading opportunities throughout the day. Success in one situation builds confidence and leads to success in more situations.
- Do not encourage your child to use ‘tricks’, such as substituting words or tapping a foot, to help her or him get through a moment of stuttering. These tricks do not really help and eventually become part of the stuttering pattern. In the long run, they can make the stuttering more conspicuous.
- Do not let teasing from siblings or friends go unrecognized. Take siblings/friends out of sight and sound of the dysfluent child and talk to them.
Every child excels at something or the other; Find out and praise her or his achievements in those fields. Help him to develop a strong and positive self image, but remember to keep the praise realistic and objective.
To help the child gain confidence, encourage her to excel at some hobby: painting, sketching, singing, playing some musical instrument, outdoor games, drama, etc.
An intelligent mind helps a PWS greatly by helping him to understand what is happening inside and outside; it helps him to acquire and master those small psychological / language skills which facilitate communication in spite of stammering. So, pay attention to his intellectual development.
Talk to his teachers (or principal) and explain to them that they must not give any negative comments to the child. That they must ensure that she is not bullied / harassed in the class room by other children. If some children do that, explain to them that the child is doing her best not to stammer, and that their mocking only makes the situation worse.
In the home, try to create an open atmosphere where the child can freely talk about his difficulty with talking. If you or other family members show your distress, pain or irritation when he stammers, the child will develop feelings of shame which might affect his personality.
8. What shall I do when I am talking to a PWS?
Listen to the content of the message rather than to how the message is coming out.
Keep natural eye contact with the person to show that you are listening and are interested in their message. "Natural" does not mean staring at the person; nor does it mean avoiding looking at the person. Pay attention to how often and for how long you usually look at another speaker and then try that with the person who stutters. Try not to look embarrassed or alarmed. Just wait patiently and naturally until the person is finished.
Let your posture, your facial expressions, your manner, and your voice show that you are listening and are interested and that you are not embarrassed.
You might be tempted to finish sentences or fill in words for the person. Unless you know the person well and have his or her permission, please do not do this. Your action could be taken as demeaning. And, of course, if you guess the wrong word, the difficulties multiply.
The person's stuttering sometimes makes it harder to understand what he or she is saying. If you do not understand what is said to you, do not be afraid to say, "I'm sorry, I didn't understand what you just said." No matter how much of a struggle it was for them to say it, this is preferable to your pretending you understood, or guessing what his or her communication was.
Refrain from making remarks like: "Slow down," "Take a deep breath," or "Relax." Such simplistic advice can be felt as patronizing and is not constructive.
Instead of telling the person to slow down, try using a slower, more relaxed speaking rate yourself. This may help relieve the feeling of time pressure and it will show them that you have time to talk.
Treat the person who stutters with the same level of dignity and respect as you treat other people.
Be aware that people who stutter usually have more trouble controlling their speech on the telephone. Saying "Hello," in particular, often presents a special problem for us. Please be extra patient in this situation.
People sometimes ask if they should ask the person questions about his or her stuttering. This is something we must leave to your judgment. But surely, stuttering should not be a taboo subject. If you have a question about it, the person will probably appreciate your interest. It is to your mutual benefit that it be talked about openly. You should be prepared that some people who stutter will be sensitive about it, but if you follow the rules of common courtesy, you should be fine.
9. I am a teacher. What can I do to help?
Meet with the child's parents before school begins to learn about their concerns and expectations.
Encourage positive communication skills in the classroom: do not interrupt someone when they are talking, talk for, or finish thoughts and statements for anyone else.
Avoid, as much as possible, treating the child with dysfluencies differently from others in the classroom. It is important that the child does not feel any differently than the other children by receiving "special treatment." The child who stutters should be held to the same academic and social standards as the other children in the classroom.
Commend the child when he or she participates in classroom discussions. Praise what they say, not how they say it.
If the child is teased by classmates, make sure to talk to the child first before confronting the teasers. Listen to what the child has to say, how he or she is feeling. If the child agrees that you speak to the teasers, pull them aside, away from the child, and tell them why their behavior is inappropriate.
If appropriate, it may benefit the child if you talk to the class about stuttering. It is important to get permission from the child. You may even help the child present a science project on stammering or how a DAF device helps PWS. (Read on for explanation of DAF under question no. 12)
Do not call on students in a specific order. People who stutter build up tension and anxiety when they know their turn is coming because they anticipate that they will stutter. It is best to call on the child early on in the process.
For oral presentations, encourage the child to practice the oral presentation requirements at home. It may even be helpful for the child to practice in the classroom to relieve some anxiety. Be sure to ask the child about how they feel about doing an oral presentation and what could be done to make it a little less frightening.
Most children who stutter are fluent when reading in unison with someone else. Rather than not calling on the child who stutters, let him have his turn with one of the other children. Let the whole class read in pairs sometimes so that the child who stutters doesn’t feel “special.” Gradually he may become more confident and be able to manage reading out loud on his own.
10. I am a PWS. What can I do?
Speech therapy is not affordable for everyone, nor is it available everywhere in India. But it does help. So if you can, go for professional help. But many PWS may not be able to do so. Here is what they can do on their own and with some help from family and friends:
1. Start talking about the problem with close friends or family members; this reduces the emotional isolation we develop over years. You may even start an interactive blog on the web. Here are two examples:
2. Prepare well for formal presentations - use PowerPoint if appropriate (or other AV aids).
3. Consciously plan and place thoughtful silences in your speech; use these silences to breathe deeply. It relieves stress and tension in speech muscles. Make your presentation or discussion participatory: ask questions and listen to others when they talk.
4. Smile whenever appropriate, while talking. Smile reduces your tension and the chances of stumbling over words also goes down.
5. Practice deep abdominal breathing and other relaxation exercises at frequent intervals during the day. While talking, remind yourself to switch into this kind of breathing instead of holding the breath unconsciously.
6. Volunteer to serve someone needing help in the neighborhood for example, a person with paraplegia. This takes your mind away from your own problem and generates good vibrations.
7. When sub/unconsciously, you talk to yourself- what kind of things do you say to yourself? PWS often acquire critical attitudes of the world around them and judge themselves harshly for every little failure or setback. The use of positive affirmations, religion, yoga, meditation, etc can help us change our self perception and attitude towards life.
8. Join a self help group. Start one if there are none in your neighborhood. A self help group can start with even two PWS. For ideas about how to run a self help group, return to this blog or get in touch with us;
You may even join a web based support group. Here are two:
There are many specific skills (like eye contact, slow onsets etc) to be acquired by constant practice and by developing greater insight into and awareness about what we do when we stammer. Which muscles tense up? Do we hold our breath or try to force it out against a closed throat? What happens before and after? This awareness helps us to deal with these, one at a time and over a long period.
Above all, do you have the will to change yourself? It is a long process with many ups and downs, but finally a very rewarding journey.
11. Is there a cure for stammering?
Drugs (like Pogoclone) have shown some promise but it is too early to recommend its general use. Among the electronic aids, Delayed Auditory Feedback (DAF) and Frequency shifted auditory Feedback (FAF) machines have been shown to help. These machines look like a hearing aid and play back the sound of our own voice in the ear with a delay of 40-100 microseconds. This is based on ‘choral effect’: PWS stammer less when speaking in unison with others. It also slows down the speech. Similar software can be used with some cellphones; it works even when we are not talking on the phone. But these technological interventions do not offer a ‘cure’ and beneficial effect tends to wear off after some months in some cases. As a part of wider exploration, it should be given a try. It could also be used as an adjunct to speech therapy. The software is available for free trial on a regular computer or palmtop:http://www.speechgym.com/
There have been some claims of cures but there have been no objective studies to confirm this. To many PWS, to be able to talk about their stammering without a sense of fear or shame is ‘cure’ enough. Yet they should continue to work on their ‘communication’ skills and strategies- as opposed to ‘perfect fluency’, which in any case is a myth.
Up to March/April 2006, several Indian people who stutter had contacted other National Associations (British, American) asking for help. These requests filtered to the International Stuttering Association. Keith (representing ISA and BSA) had joined various Internet groups of people who stutter who were looking for ideas, debate and to exchange information among themselves and SLPs/SLTs (the professionals who try to help pws). He was also aware of Indian people who stutter requesting help, requesting information, asking about different treatments and complaining that their therapies did not usually give good long-term results.
It also promoted Acceptance as a practical need, to begin the change; a first step in a long journey - and also as a spiritual act: accepting the present moment, instead of resisting and denying it. A series of workshops followed (Kolkata, Delhi). Mr Manimaran sponsored many workshops in Chennai (link). Later, experienced pws began running these workshops on their own (Lucknow).
Blog or website? Why not both?
While the blog had survived since May 2008, a simple (Joomla) website too was launched in Aug 2009 (link). While free blog could be managed easily by an individual, a website, however simple, needed annual subscriptions and a team to update and manage it. But many IT professionals thought that TISA deserved a proper website and it was set up. The website inspired many pws to share personal testimonies, contribute write ups, share photographs, announce events etc. Sometime in 2015, the site became inaccessible, ostensibly, because someone had forgotten to pay up the subscription! Anyway, after Goa conference, once again, the tech-savvy gang in TISA went in a huddle and launched a better website with the same url (stammer.in). Another group said: why not keep the blog going- as a sand room for the newbies to practice?
Other than the old blog and the new website, year 2016 saw a huge growth of whatsapp groups, started by individuals, SHGs, women and others - discussing stammering and myriad other issues and interests. Some volunteers organised Google hangouts while others played with skype conference calls. Interestingly, IT professionals outnumbered other streams (lawyers, doctors etc.) within TISA community. This amply reflected in the way we communicated, collaborated and the way we went about planning events like National Conference.
Do women stammer?
Of course not! Many Indian male pws sincerely thought that women can not stammer! But every NC brought out at least 1-2 women who stammered. Goa NC (2017) had about ten WWS (women who stammer). This was a good education for the community. If men suffered because of stammering, women who stammered, suffered even more (link). And still they took courage and stepped out of the closet, into the large gatherings. Some wws challenged themselves further by getting involved with setting up new SHGs and NCs. When they began joining whatsapp groups, we had to learn respecting privacy and treating women as equals. On the whole, presence of women in the movement has enriched and humanized the whole experience.
This has been possible largely because of constant fortuitous supply of volunteers and friends with diverse skills, who have steadily taken up various responsibilities - from fund-raising, media-blitz, maintaining the website to coordinating the movement itself. Dhruv (Mumbai) steered our first online fund raising effort in 2015. Manimaran, JP and Harish came forward at the right moment to fulfill a central coordination function. Many more friends have sprang up in recent years. Some have moved on; some have looped back after a gap. They continue to inspire and sustain this movement.
But certainly, there are miles to go yet and we can not afford to block or pause - for too long! Our hope for future is to create a movement which is truly Indian - which helps pws see themselves and others as inherently perfect Aatma (spirit), and serve one-another in that light - as a sadhana, as a celebration, as a Sewa.
May 12, 2008
May 9, 2008
Everybody talked about 10 min each. They shared their experiences. After the meeting they decided (their words):
"1.Every fortnight, let us meet at Marina beach.
2.Add more numbers to our group. For this, one member will give an
AD in Chennai Free AD giving both of our contact numbers and mail IDs.
3.Next time each of us has to tell a few jokes.
4. Cultivate more homour sense as this is very much lacking with PWS. Even laugh at our stammering.
5. After few meetings, we thought of a get together with our family members."
Friends, you are moving in right direction, of course! (TISA)