Parents Know Best
By Janice Westbrook, Ph.D
Staff was a newsletter published by Aaron's Associates, a non- profit organization devoted to the support of children who stutter. Nine issues were published during the school year, Sept.-May. Staff is not copyrighted. Board of Directors of Aaron's Associates and editorial staff of the newsletter: Joan Babin, Ellen Bennett, Sally Bowman, Betty Clark, Janice Lougeay, and Janice Westbrook (Staff Editor). The following article from Staff appeared in the February 1995 issue and was sent to me by Gerald Johnson.
When It Comes to Assessment
Parents Know Best
by Janice Westbrook, Ph.D.
Parents, did you ever wonder how Speech- Language Pathologists decide whether you child's stuttering is "severe", "moderate", or "mild"? Clinicians, are you asked by your employers to provide such rankings for childrens', disfluencies? Are you sometimes confused about how to do that?
Well, everyone who is confused by such terminology is in good company! Experts often debate how to judge the severity of a child's stuttering. In truth, "severity" is a subjective term. What is "severe" to one family or person, may not necessarily be "severe" to another. In most cases the term reflects the degree to which stuttering interferes with a child's life. It also implies a prediction of chronicity.
On pages 2-4 of this issue, an assessment tool is shared which has served me well for years. I first designed it to be used with preschool clients because I believed other tools gave undue preference to clinician observation, and did not adequately value the opinions of parents. Through the years, I have come to use it as a guide for elementary schoolage children, as well, and my confidence in parental report has steadily increased. Parents see their child every day, and what's more important, any parental concern is a clinical concern. To serve children who stutter one must serve the entire family. (Further discussion Of the rationale for the rankings is provided on pages 5-7 of this issue ).
I use three Meetings to conduct this assessment. The first is with parents before I meet the child, and it is vital that both parents, if living in the home, attend. This is a long meeting. I have never been able to conduct it in less than one and one-half to two hours.
Before the second meeting I ask parents to conduct three sets of observations for 2-3 days each. They use as a guide pages 46-48 of If Your Child Stutters: Questions and Answers by the Stuttering Foundation of America (1-800-992-9392). I ask them to describe times their child-stutters, times they do not stutter, and the effects of basic environmental modifications.
The second meeting focuses solely on the child. It is a getting-acquainted time, a time for the child to look me over. At the third meeting, the child's linguistic, phonological, and oral motor development are assessed.
Counting of disfluencies is not a part of this assessment. It has been my experience that frequency counts, while necessary for research, are misleading clinically. I have treated hundreds of children whose stuttering was severe, but frequency counts were low. I do not trust such information. I have found parents to be the most reliable judges of a child's fluency.
I have never been able to help a child who stutters without parental assistance. I tell parents this the first time I meet them, and I remind myself of it constantly.
Janice B Westbrook, Ph.D.
Fluency Specialist, Staff Editor
PARENT-CLINICIAN FLUENCY ASSESSMENT
by Janice B. Westbrook, Ph.D.
A - Indicative of "mild" stuttering;
B - Indicative of "moderate" stuttering;
C - Indicative of "severe" stuttering Circle A, B, or C according to which most closely describes the
answers given by parents. Add clinician observations if they
are in the direction of greater severity. Never rank an item as less severe than parent perceives it. At the end. summarize and discuss results with parents. 1. Tell me what concerns you about your child's speech. A. - They repeat, start over
- They sound like they might be starting to stutter
B. - They stutter
- They talk too fast
- I don't want them to be teased
C. - I'm afraid they will start stuttering and won't stop
- Stuttering will handicap them
- It worries, frightens me
2. When did you first notice this problem?
A. - Less than I month ago
B. - 1 to 3 months ago
C. - Longer than 3 months ago
3. Does the stuttering come and go, or has it been persistent
since you first noticed it?
A. - 1 to 2 episodes, less than 1 to 2 weeks in length, with
fluent interludes between
B. - 3+ episodes, less than 2 to 4 weeks in length, with
fluent interludes between
C. - Periods without stuttering are less than 1 day in length
consistently over a period of more than 1 month
4. Is there a history of stuttering in your family?
A. - No
B. - Yes, distant relatives
__maternal grandparents
__paternal grandparents
__maternal aunts, uncles etc.
__paternal aunts, uncles etc.
C. - Yes, immediate family
__mother
__father
__brothers
__sisters
5. Has your child had any unusual medical problems?
A. - Normal problems
B. - Serious illnesses, but unrelated to speech
C. - Serious illnesses which could be related to speech
6. Have you had any unusual family Problems lately?
A. - Normal problems that are being managed and do not disturb
consistency and security of the family
B. - Some problems which interrupt routines necessary for
linguistic and emotional development
C - Serious problems which may damage the child's social,
emotional, or linguistic growth (e.g. punishment, ridicule
for stuttering)
7. How does your child get along with other children?
A. - They have other children to play with and only have
normal problems occasionally
B. - They have no other children to play with or have some
difficulty getting along with playmates
C. - They are extremely shy when around other children or have
a lot of difficulty getting along with them
8. Is your child difficult to discipline?
A. - No, just normal
B. - They are sometimes a little more difficult to handle than
other children in the family
C. - They are very difficult to handle
9. When did your child first begin to talk?
A. - Between 1 year and 18 months of age
B. - Between 18 months and 2 years of age
C. - After age 2
10. Tell me about the way your child gets you to do what they want.
A. - They tell me, or point
- They persist until they get what they want
B. - They point or start fussing
- Sometimes I can't tell what they want
C. - They seldom ask for anything
- They just cry, and won't say what they want
11. How often does your child ask questions?
A. - Very often
B. - Not very often
C. - Hardly ever
12. Describe your child's favorite play activity.
A. - They have a favorite activity
- Description of play is normal
B. - They either don't have (or parents do not know) about a
favorite play activity
- description of play is restricted
C. - Description of play activities suggests language delay
- Description of deprived environment for language
development
13. Does your child start activities or conversations with
others?
A. - Yes, often
B. - Not very often
C. - Hardly ever
14. If strangers have trouble understanding your child, do you
think it is because of the stuttering?
A. - No
B. - Sometimes
C. - Yes
15. When does your child communicate best?
A. - When they are relaxed and comfortable
- When they are not hurried
B. - When they are alone with someone
- When they have someone's complete attention
C. - When they are by themselves
- When they are playing with a pet
16. When does your child have the most trouble communicating?
A. - When they are anxious
- When they talk to a stranger
- When they are in a hurry
B. - When several people are around
- When they don't have someone's complete attention
- When they are explaining something
- When they have to ask for something they want
- When they ask questions
- When they have trouble thinking of what to say, or how to
say it
17. Do you think your child is bothered by the stuttering?
A. - No, I don't think they are aware of it
- They do not seem to be
B. - Sometimes I think it does, but they do not say anything
about it
C. - Yes, they have told me that it bothers them
- Yes, I can see that it bothers them
18. How does your child normally react to their stuttering?
A. - They just keep on talking, with no comment about it
B. - They sometimes start over, or look frustrated
C. - They give up talking
- They look away
- They use unusual ways of speaking
- They use movements/sounds to start speech
- They express frustration, cry
19. Has anything happened which makes you think the stuttering
is keeping your child from talking?
A. - No
B. - I think it may be
C. - Yes
20. What worries you most about your child's speech?
A. - That they am having trouble, and I wish I could help
B. - That I am having trouble understanding what they say
C. - That their stuttering (or talking) gets on my nerves,
worries, or embarrasses me
- That I believe the stuttering makes them feel bad
21. Has anyone ever teased your child about stuttering?
A. - No
B. - This may have happened a few times, but not very often
C. - Yes. This has happened often (or several times)
22. Has anyone ever called your child a stutterer"?
A. - Yes
B. - This may have happened a few times, but not very often
C. - Yes. This has happened often (or several times)
23. When you watch your child stutter, how does it make you feel?
A. - I feel sorry for them, and wish I could help them
B. - I feel frustrated, anxious or worried
C. - I feel angry
- I think they are doing it out of habit or to get attention
24. Tell me some things that you have done which seem to help your child when they stutter.
A. - I look at them when they speak, and wait for them to
finish
- I tell them to slow down
B. - I tell them to think about what they are going to say
- I help them say the word
C. - I tell them to take a deep breath before talking
- I tell them to wait, relax, or quit being nervous
- I tell them not to talk like that
25. Have you ever known a person who stutters?
A. - Yes. We have a family member who stutters
- Yes. I've known a few people who stutter
B. - I've only seen people who stutter, I've never really
known them
C. - I've never even seen a person who stutters
At this point in the interview, the clinician should demonstrate
different types of disfluencies to parents, and allow them to
report which their child has exhibited. The clinician should
begin with more severe behaviors so parents can, hopefully, have
the relief and joy of reporting "Oh no! We've never seen
anything like that." In this way, the clinician educates parents
about stuttering, and models objectivity, openness and confidence
- attitudes she will want to help them adopt.
26. Let me describe to you some kinds of disfluencies. Tell me
if any of these are similar to your child's disfluencies.
(Demonstrate)
- Silent posturing with lip pursing
- Silent posturing with open mouth, ending in abrupt voice onset
- Prolongations with pitch rise
- Tense, disrhythmic part-word repetitions with use of schwa
vowel
- Tense pauses
- Combination of part-word, whole-word, and phrase repetitions
- Easy, rhythmic part-word repetitions without use of schwa vowel
- Easy, whole-word repetitions
- Phrase repetitions
A. Disfluencies will be characterized as follows:
No struggle
No awareness
1-2 Repetitions per instance
.5 to 1 second in length
Even and rhythmic
___Phrase Revisions
___Phrase Repetitions
___Interjections
___Word Revisions
___Word Repetitions
___Syllable Revisions
___Syllable Repetitions
B. Disfluencies will be characterized as follows:
No struggle
No awareness
3+ Repetitions per instance
1-1.5 seconds in length
Even and rhythmic
___Interjections
___Word Repetitions
___Syllable Repetitions
___Pauses at ungrammatical junctures
___Easy prolongations
___"Runs" of disfluencies
3+ types per instance
(e.g. "uh I I d-don't I don't want to.")
C. Disfluencies will be characterized as follows:
- Struggle
- Awareness
- Uneven, disrhythmic (with or without struggle)
- 1.5+ seconds in length (with or without struggle)
Respiratory disruptions
___Vowel glide
___Vocal fry
___Intensity/pitch disruptions
___Aphonia
___Insertion of schwa vowel
___Facial tension/grimacing
___Fixed articulatory posturing
___Body/limb movements
SUMMARY OF RELATED ASSESSMENT PROCEDURES:
27. Parental speech models:
A. - Parents use a slow rate and simple language
B. - Parents use a fast rate and complex language
C. - Parents' speech is difficult to understand
28. Oral peripheral examination:
A. - Normal for age
B. - Mild-moderate problems
C. - Severe probe
29. Respiration:
A. - Abdominal, rhythmic
B. - Thoracic, rhythmic
C. - Thoracic or clavicular, disrhythmic
30. Receptive language proficiency:
A. - Within 6 months of chronological age
B. - 6-9 month delay
C. - 9+ month delay
31. Expressive language proficiency:
A. - Within 6 month of chronological age
B. - 6-9 month delay
C. - 9+ month delay
32. Articulation/phonological proficiency:
A. - Normal forage
B. - 6-9 month delay
C. - 9+ month delay
33. Rate of speech
A. 4-5 syllables/second
B. 4-5 syllables/second (plus or minus one)
C. 4-5 syllables/second (plus or minus two or more)
34. Connected speech:
A. Intelligible, smooth, phrasing coordinated with breathing
B. Intelligibility somewhat impaired jerky, short phrases with
mild breath discoordination
C. Intelligibility seriously impaired, serious disruptions of
smoothness, short phrases with serious breath discoordination
35. Voice:
A. Normal for age
B. Disorders of quality, pitch, or resonance
C. Cleft palate, vocal nodules
Discussion of Rankings
1. Tell me what concerns you about your child's speech. Parental concern is very important, because parents set the tone for how stuttering will be addressed in the family. Many parents grieve over the fact that their child stutters. They waste time and energy in placing blame for it, feeling guilty. A good clinician can usually bring them out of this quickly by explaining that the therapy process requires as much positive energy as a family can muster. It will not benefit the child who stutters to see his parents trying to blame stuttering on someone. What must be conveyed is that together the family intends to address the problem.
2. When did you first notice this problem? Most periods of "normal" disfluency last no longer than a few weeks. Although experts differ on the length of time one should wait before worrying, I am conservative in this regard. The quality of disfluencies must be considered. With children who are having tense prolongations and struggle, I start worrying immediately. No child should have to struggle for even a month before someone worries.
3. Does the stuttering come and go, or has it been persistent since you first noticed it? The variability of stuttering is a good key to severity. "Normal" disfluencies tend to come and go. They are not consistent. Periods of disfluency which tend to be consistent are a greater cause for concern.
4. Is there a history of stuttering in your family? Children who have no other relatives who stutter (unless there is some linguistic or motoric problem) generally recover from stuttering more readily than children who possibly have a genetic predisposition. The more distant the relatives, the less troublesome is the genetic component. Having immediate relatives who stutter means that the child is very likely to have inherited the tendency, plus the child may be in an environment where stuttering is the norm. Such a child deserves immediate intervention. They are not doomed to chronic stuttering, but careful clinical management is certainly advised. This is especially true for the male offsprings of females who stutter.
5. His your child had any unusual medical problems? There are prenatal, natal, and postnatal factors which could contribute to the instability of a child's linguistic and motoric development. Children with physical challenges often require more direct intervention and for longer periods of time. This does not necessarily mean that these problems caused a child to stutter, but they could be important in determining the skills the child will bring to the task of coping with stuttering.
6. Have you had any unusual family problems lately? This is often the first question relatives (and clinicians) ask parents when investigating a child's disfluency. Popular myths have always emphasized the role of emotional and psychological factors in the development of stuttering. While studies have demonstrated that, taken as a whole, people who stutter are not remarkably different from other people psychologically or emotionally, common sense would tell us that any problem (stuttering included) can be aggravated by social and psychological issues. In addition, regardless of etiology, stuttering is itself taxing to the mind and heart. It is borne more easily by a person who is supported by stable relationships. For these reasons, it will always be important for a clinician to know if there are unusual stressors which may affect a child's progress in therapy.
7. How does your child get along with other children? A child's social skills and their ability to be assertive in communicative contexts plays a very important part in the progression of stuttering. A child who is by nature prone to avoidance and seclusion will need more help. Children can be taught coping skills that will promote, rather than impede, fluency development.
8. Is your child difficult to discipline? Control issues often surface as a family deals with stuttering. Parents can sometimes conclude that a child is using the problem to obtain extra attention or favors. Children are human and this could happen, but a young child is unaware of their role in the drama. Children are practical. They use what works for them. It will be the task of the clinician and parents to make sure that non-productive behaviors are not rewarding.
9. When did your child first begin to talk? Children whose overall language development has been timely and normal stand a better chance of overcoming stuttering. Children who were late to begin to talk or have linguistic challenges will need extra help. It is important that a clinician investigate this, and incorporate such help in intervention for the stuttering.
10. Tell me about the way your child gets you to do what they want. Assertiveness and persistence in meeting one's needs are necessary for normal linguistic and fluency development. When a child is having difficulty doing this it may be a reaction to stuttering, or the child may lack necessary linguistic skills. In either case, therapy can help. This is an area that requires close cooperation between clinician and parents.
11. How often does your child ask questions? This is another pragmatic indicator of a child's communicative ability. Young children are supposed to drive adults crazy with questions. This is normal! It a tool they use to acquire knowledge about the world. Bereft of this tool, children's language development does not progress normally. Adults should encourage young children to ask questions, even if they stutter when doing so!
12. Describe your child's favorite play activity. Play is serious business to children. It is an indicator of cognitive, linguistic, social and psychological development. In healthy parent-child relationships, parents cherish and encourage initiative and spontaneity in play. Much can be learned about a family by listening to the way parents describe the play of their children. Do they notice and value personal preferences? Do they ensure their children's safety? Do they oversupervise? Adults who are controlling in play will probably need help in establishing communicative boundaries, as well.
13. Does your child start activities or conversation with others? People differ in the degree to which they initiate interactions, or follow the lead of others. Stuttering has an inhibiting effect on everyone it touches. A child who is inhibited in the first place is at an even greater disadvantage if they stutter.
14. If strangers have trouble understanding your child, do you think it is because of the stuttering? A great many children who stutter also have articulation problems which impair intelligibility. This additional challenge can be troublesome. People are confused if they do not understand you, and irritated if you keep them waiting. When a child has to consistently endure encounters with listeners who are confused and irritated, this is a "severe" problem.
15. When does your child communicate best? Everyone communicates best when they are relaxed and unhurried. When a child's fluency is so fragile that extraordinary attention is necessary before they can speak without stuttering, this is not encouraging. Such children will have few times that they can be fluent, because normal communication requires turn-taking. Monologues are not communicative.
16. When does your child have the most trouble communicating? There are circumstances which tend to interfere with quality communication. This is normal. When ordinary tasks such as speaking around several people or relating common events triggers disfluencies, a child is placed at a real disadvantage. If a child has to be preoccupied with the mechanics of speaking, communication loses its naturalness and the child loses the attention of listeners. This aggravates stuttering and creates feelings of helplessness. Therapy can disrupt this helplessness, and teach better ways to cope.
17. Do you think your child is bothered by the stuttering? This is possibly the most important question parents can answer for a clinician. Many young children can appear to be casual about their stuttering, especially when talking to a person like a Speech-Language Pathologist. But parents know their children. They have seen their faces when they stuttered in front of friends. They have read the sadness and disappointment in eyes lowered when asking dad for a favor, or a playmate for a toy. They know their children like no one else, and if a child is bothered by stuttering, therapy is definitely needed.
18. How does your child normally react to the stuttering? This question allows parents to describe how they know whether of not their child is bothered by their stuttering. The more bothered the child, the more severe problem must be rated.
19. Has anything happened which makes you think the stuttering is keeping your child from talking? Even children who might otherwise appear to be unbothered by stuttering may begin to avoid speaking situations. They may tend to play by themselves too often. They may use gestures instead of words. They may tag along after a sibling, rather than venturing forth by themselves. Clinicians should help parents become aware of subtle signs of communicative difficulty, and these issues should be addressed in therapy.
20. What worries you most about your child's speech? This was the first question asked, but the word used was "concerns." This question should be asked again, using the word "worries", and the clinician should listen closely as parents speak about their fears. By this time in the interview, parents begin to sense that they can be frank. They begin to trust the clinician, and a bond is formed. The bond needs to be strong. Any distrust between clinician and parents will interfere with the child's progress.
21. Has anyone ever teased your child about stuttering? No one ever really recovers from teasing. It stays with you forever. It always damages. Every adult in the life of a child who stutters must work together to end this cruelty. Much of the work will be done behind the scenes, to avoid further embarrassment to the child, but the problem should definitely be confronted.
22. Has anyone ever called your child a stutterer? No child should be called a stutterer. A stutterer is what the child will become if we are unsuccessful in helping them. Let the rally cry of every adult who knows the child be, "Not if I can help it!"
23. When you watch your child stutter, how does it make you feel? This is another question that allows a clinician to listen closely to what parents say. This time, the clinician asks them to focus specifically on feelings. One does not have to have a counseling degree to engage parents in such a discussion. Adults discuss feelings with each other all the time. Parents need to know that the clinician appreciates that this is a heart-wrenching problem. This is an excellent time for the clinician to express her feelings, her fears about helping this child. Stuttering frightens everyone it touches!
24. Tell me some things that you have done which seem to help your child when they stutter. No matter how a parent answers, a clinicians response must be "Did it help?", 'Tell me how you came to choose that particular advice.", or "I'm sure you wanted to help, and you probably felt like you had to do something." In other words, parents must be taken seriously, and absolved of any guilt which might keep them from joining the therapy team. Whatever was done, is now in the past. What is important is the future. Sometimes advice clinicians have taught is "wrong" turns out to be helpful for a particular child. No parental method of dealing with stuttering should be automatically discounted unless it involves abusive behavior.
25. Have you ever known a person who stutters? I encourage parents to interact with adults who stutter so they can see that many individuals have either overcome stuttering, or have learned to cope with it. Encountering adults who stutter can inspire parents to work hard to help their child. Parents must become experts on stuttering so that they can serve as their child's advocate.
26. Let me describe to you some kinds of disfluencies. Tell me if any of these are similar to your child's disfluencies. This is a very important part of assessment because it allows the clinician to observe parental concern, observational abilities, and understanding of stuttering. The clinician can explain language and speech production, and its relationship to development. Hopefully, parents will be able to see that their child's problem could be worse. If their child's stuttering is already severe, this part of the session will need to be handled with great tact and sensitivity. It would be helpful for clinicians to read the excellent books now available which describe stages of grief. Denial, anger, sadness, and fear are not unusual feelings for parents to portray. Therapy goals can be set at this time, so that parents can feel an integral part of the steps that will be taken to help their child. This will ease their pain.
27. Parental speech model. When parents slow and simplify their communication with children who stutter, something very helpful happens. Professionals still quibble about exactly why this is true, but all agree that this basic environmental alteration is the closest thing we have to a magic pill for stuttering. It is possible that as the communicative atmosphere changes, parents are more attentive. We do not really know, but this should not keep us from taking full advantage of the phenomenon.
28., 29. Oral peripheral examination/Respiration. Some children who stutter exhibit signs of oral motor weakness or discoordinated breathing patterns. It will be important for a clinician to know this, as therapy is planned.
30., 31. Receptive and expressive language proficiency. No clear guide can be given as to how language delays affect fluency, because this is an area still being investigated. Clinical experience has shown that children who face multiple challenges will more surely need therapeutic intervention. In addition, children who stutter can sometimes have subtle, discrete language problems, such as impaired word retrieval.
32. Articulation/phonological proficiency. Many children who stutter exhibit delayed development of articulation. Some have difficulty with phonological processes. These additional challenges mean that the child will need even more support in therapy and at home.
33. Rate of speech. Children who stutter may sometimes speak rapidly in order to hold a speaker's attention, or they may slow their rate excessively in an attempt to attain fluency.
34. Connected speech. Some children can "pass" structured assessment procedures and then become disfluent in informal conversational tasks. A good assessment will consider a range of speaking tasks.
35. Voice. Disorders of voice can precede or follow the onset of stuttering. For many children, fluency therapy resembles voice therapy. A voice screening is an important part of fluency assessment.
