Saturday, January 24, 2009

The dilemma of a stuttering parent

Every week I receive several emails from all over the world asking me all kinds of questions. The following email from a stuttering parent illustrates well the dilemma of what to do. I or we might disagree with claims of magic treatment for children and can live on happily, but as a parent you need to decide on the best course of action to take; even inaction is an action:



I have been stuttering since 4’ish. One of my biggest fears was the potential of genetically condemning my children to this disability. My brother’s daughter, now 15, is also a stutterer. I now have a 2 year old son, who is of course the cutest, smartest, and one of the best communicators... what else is a parent going to say!? But seriously, Reed has been speaking for more than a year and can communicate clearly and in full, thought provoking sentences. About a week ago he asked this simple question, “What are you doing?”, only this time he said, “What are youuuuuuuuu doing?”



Now, being a stutterer, my immediate reaction was definitely not my finest moment. I whipped around from whatever it was that I was doing with a look of sheer terror (I’m sure), and asked him if everything was ok. I asked him to ask me the question again, and he did, and he stuttered in the same manner. I asked him if he was having a problem saying “you”. At this point he recognized my concern and got defensive. I spoke to my wife shortly after and we agreed that we would not draw any more attention to it. I wish I could go back to the moment... oh well!



Anyway, I’ve been paying close attention to Reed’s speech since the incident and have not noticed this level of stuttering on any other word. It only seems to happen when he’s asking the same question, “What are you doing”!? Now, parental logic would say that my reaction caused this to continue. My stuttering logic tells me different. He’s started putting his hand over his mouth while the block is taking place. It even appears that he is frustrated by it?



My question is, should we try the “wait and see” theory that is the common response to this situation at his age? I also don’t want to jump the gun and draw any more attention to it (although the damage might be done).

21 comments:

Anonymous said...

Neither I or my husband stutter, and I was reassured by the Dr.'s suggestions to not bring attention to my son's stuttering (at age 2--when he began putting 2+words together). But when it began to affect his interactions with peers in the neighborhood, (they would leave him with his trying to get his thought finished) he began Speech therapy (age 4). It reduced his stuttering significantly at the time and his ability to negotiate through backyard games with the neighborhood kids was worth it. With a move, we selected small private schools, where he did well and really did not notice his own stuttering. In public school (middle school and beginning of High school), the secondary behaviors began, but with renewed Speech therapy, Fluency Master,a counselor and a smaller private school, he's back to being fluent enough most of the time.
I think that pragmatic decisions are worthy choices. If the improvement is important for mental health and the development of a healthy self-esteem, than that's what is being "purchased." In the long run, it may not be a cure, but short term, at crucial times in development it seemed like the right decision for us.
Lynne

Norbert @ BSA said...

Tom, what *are* you telling these parents who are contacting you?

Ora said...

The best response might be simply to point out that plenty of young kids stutter, and 9 out of 10 of them outgrow it. That's not just a reassuring comment - it's the truth. And it's also non-obvious; people generally are not aware of this fact.

Of course, this does not fully resolve the question of what should a parent do when they notice a child stuttering. Presumably, "watchful waiting" is the proper course of action, initially. But for how long? What is the natural "recovery" period of the normal stuttering child? When should a parent decide that the stuttering has gone on long enough and it's time to seek professional help?

Tom - your thoughts?

Anonymous said...

Imagine you belong to a tribe of pygmies in the jungle. Every tribe has a witchdoctor - a mystical magical individual who can cure all ills with a few magic potions and some chanting. By our standards, the witchdoctor's knowledge is pseudoscience and perhaps his success is due to placebo or just plain luck. But in your tribe of pygmies, he is the one who seems to know the most about treating illnesses. So, if you have a fever, you had better go and see your friendly neighbourhood witchdoctor.

This is similar to stuttering therapy in our society. SLPs have no idea of the cause of stuttering. They cannot tell us with certainty that 2-year-old babies actually stutter; the only indication they have of infant stuttering is subjective interpretation of baby-talk. But if a SLP tells you that he/she has evaluated your infant child's speech and recommends therapy, then you had better take the advice because the SLP seems to know the most about stuttering.

But in reality, SLPs know very little about stuttering. People like Mark Onslow and Susan Block are modern-day witchdoctors. The big problem is that these incompetent people have an iron-grip on stuttering research and, the longer they are in such positions of power, the longer stuttering research will remain stunted. This is bad for stutterers, but good for these witchdoctors who, in the case of Lidcombe, are making money from treating infants who may not even have a stutter, or are "curing" stutters that would have disappeared without intervention.

George

Andreas said...

My daughter (4) can talk like a waterfall what neither my wife nor I (stutterer) do. She is so cute. And she loves us reading books for her while my stuttering is no problem for her. She never asked why it takes so long sometimes to say a word, she is always patient.

Tom Weidig said...

To Norbert,

I tell them

a. I do not have a good clear answer, and no-one really has. If they do, be suspicious.

b. The majority (80%) will recover. So your kid is very likely to recover.

c. If it is a boy and there is a family history the recovery is less likely.

d. It might be a good idea to let your child be tested for other developmental disorders in case stuttering is really something else.

e. If he is OK, probably wait a few months. if it persist, go to a specialised speech therapist, and don't worry about what therapy they do.

f. Even if it is not effective, it won't harm.

g. do not react emotionally to stuttering but do not ignore it either.

Tom

Norbert @ BSA said...

Well, if they're in the UK you might want to invite them to contact the BSA helpline. Or the BV service in Cologne forGermans, or the NSA/SFA in the US?

Mary said...

Tom -

I have been harmed greatly by speech therapy. I know quite a few adults who stutter who know they were harmed as children by going to speech therapy. All you have to do to know this is go to a chapter meeting or conference of self- help, like the NSA. Parents at these meetings many times share their negative experiences about speech therapy. Do you go to any self help groups, or are you exclusively a "researcher"?

I believe you are wrong in you statement to parents that "if it is not effective, it won't harm." All one has to do to know this is a grossly inaccurate statement is go to an adult self-help meeting. I was at a meeting at FRIENDS where a group of parents shared with me they believe the number one reason for stuttering getting worse in children is the speech therapy there kids had received.

Where is your research that "it won't harm"?

Parents should consider this: specialized speech therapists are more than often advanced witchdoctors.

Tom Weidig said...

First of all, I wrote specialised therapist and not any therapist. They have more understanding of stuttering. And I know good ones.

Then, you are confusing a correlation with a causation. It does not mean that because kids went to therapy and the stuttering got worse that therapy causes increased severity in stuttering.
How do you know that they would not have gotten worse anyway.

Yes, there is research on fluency after therapy and it does not show more stuttering on the contrary.

Tom Weidig said...

Hi Norbert,


yes, I usually point them to the website of the respective association.

best wishes,
Tom

Ora said...

Tom and/or Norbert - I'm interested in your thoughts....

Several people have suggested that therapy doesn't help. But I believe that there IS a lot of research to show that therapy helps, isn't there?

Obviously the research and the claims have to be taken with all the normal caveats, such as:
- researchers may have a self-interest;
- treatment is often performed by therapists who have no expertise in fluency disorders;
- plenty of people make claims that are not well supported;
- selection bias due to the tendency to publish favorable studies and ignore the rest;
- difficulty in experimental design;
- treatment only helps some of the people, some of the time, not everyone all the time;
- etc.

But even after considering all that, don't you consider it well-established that speech therapy can help?

Jane said...

As a mother of a child who stutters, I agree with Mary.

Tom - Do you know they would have gotten worse without therapy? Please share your supportive research to prove your point.

I feel if therapy were so successful, there would be no need for self-help groups.

Help us as parents, Tom - Who exactly are the "good ones"?

Norbert @ BSA said...

Good therapy is very often highly successful and there is no evidence of children being harmed. If someone is making an argument that therapy for children is making these children's speech worse, then it would be up for those making this assertion to prove it.

On the contrary, we have found that what actually *harms* children who stammer is the therapist's fear of 'making things worse' by 'drawing attention to it' and their consequent hesitation in engaging in any meaningful therapy.

That's why an awful lot of children who stammer are still being put on review, as in telling the parent to "come back in three months time and see how he's doing" rather than benefit from therapeutic intervention at the optimum time.

"Who exactly are the "good ones"?"

The good ones are the ones who will look at the child's speech and assess whether there are any risk factors that would indicate that therapy might be called for. The good ones are the ones that reassure and involve the parents and who will monitor and, as necessary, modify their approach to take into account the circumstances of that particular child. The good ones are the ones who will collect data and follow their clients for a number of years after discharging them to see whether what they are doing has actually made a difference and, as a result, constantly review their practice.

All that takes specialist skills which, in terms of stammering therapy, are unfortunately not widespread. But they are out there and usually the national organisations in your country will know who they are.

Anonymous said...

Jane and Mary are wrong.

Therapy for stuttering never harmed any child. As evidence, I offer the millions of adults that had therapy as children who stutter openly and with extreme ease demonstrated by miniscule amounts of disfluencies in their speech. As well, the research supporting this - no, proving - is overwhelming.

Parents need to stop making their mistake of choosing poor therapists and therapies.

Here in America, ASHA has only good ones. The public schools are overflowing with therapists and therapy that offer success working with CWS. And the training universities, professional boards of self help organizations and the SFA have had tremendous success spreading good therapy and therapists across the land. Stuttering and negative outcomes for children in therapy are a thing of the past.

"Thank God Almighty we're free at last."

Oh- BTW - There is still land for sale in the desert...

Ora said...

Norbert - You wrote "The good ones are the ones who will look at the child's speech and assess whether there are any risk factors that would indicate that therapy might be called for."

I'm personally familiar with therapy for adults but not children. I don't know what you mean by risk factors. It's relatively straightforward to determine whether a person - child or adult - actually stutters. But what do the risk factors show - the likelihood that a child will develop stuttering? Or will continue to stutter and won't outgrow it? And how are these risk factors assessed?

Thanks.

Norbert @ BSA said...

They are risk factors that would indicate that the stammer might be more than a passing phenomenon. We know the great majority of pre-school children who develop dysfluent speech will recover naturally. The trouble is to find those who will require additional intervention and for that, therapists use risk factors. Some of these are
- has there been any stammering in the family?
- has the stammer continued for a long time?
- is it variable, i.,e, does it come and go? For example, a sudden, severe onset followed by a slow but consistent improvement might indicate a greater likelihood of natural recovery, whereas a creeping onset where there are good days and bad days might indicate a need for intervention
- is the child aware/concerned

These are no hard and fast rules - a differential diagnosis is very difficult but we tell parents that if just one of these risk factors is present they should seek a referral to a speech therapist.

Anonymous said...

Initially we sought out Speech Language Pathologists associated with a University Program. The results were good, and in hindsight, I suppose that the school had instructors who were specialists in stuttering.
Latter I stumbled upon a specialized certificate program for SLP who proved that they had passed a level of proficiency in offering therapy for individuals who stutter. The link is here:
http://www.stutteringspecialists.org/

There were only 2 in our state. We sought out both, but one was more effective than the other. Better rounded approach that resonated with our son. It was very helpful.
Lynne

Ora said...

Norbert - Thanks. I see what you mean now.

Dave said...
This comment has been removed by the author.
Dave said...

I've posted my testimony as a stutter, how I over came it and some suggestions for parents.

http://mikezelenka.wordpress.com/2009/02/01/stuttering-and-conversation-anxiety/

Sunday, 1 February 2009 22:59:00 o'clock CET

Anonymous said...

Dave -

A most sincere thanks for sharing. Most interesting! Glad for you!

A Stutterer