Wednesday, August 01, 2007

What should parents do?

I often get asked by parents and relatives what they should do about their stuttering child.

Here is what I tell them:

1) 80% will recover naturally, so with a bit of luck it will go away.

2) go to the speech and language therapist to check whether any other linguistic or neurological issues exist that might create or enhance stuttering. But dont expect them to have a cure.

3) getting the child fluent might be unachievable but keeping the psychological and social impact of stuttering at bay is possible. Talk to the child openly about stuttering with avoiding negatives but also irrealistic positives (stuttering is no handicap at all, it's the others that make it a handicap).Maybe point to other relatives or friends that stutter and tell them that they are successful in life despite their stuttering.

4) get on the Internet and read about stuttering. So you become more knowledgeable and understand better what it feels like to stutter.

5) Re fluency treatment, I find it hard making clear statements. You can try speech exercises and they shouldnt hurt but how much do they help? You could follow a program like Lidcombe or others.

Any more ideas?


Anonymous said...

There have been 3 distinct times of improvement in our son's stuttering. 1. Early intervention: At four we took him to speech therapy and he improved from being unable to get out a thought when trying to negotiate play/peers, to stuttering, but able to communicate. (With his having some control/ input over the process) He did not want to continue therapy at 5years because he felt like they wanted him to be perfect. We had him go to a private school and the acceptance there seemed to instill a good self esteem at school. 2. Knowledge and Speech therapy: In third grade he wanted to go to speech therapy. There he learned that all people stutter some and how to hear his / others stuttering. (He really seemed unable to notice it unless it was a block). In forth grade and an insurance change he went to private speech therapy. He was in a group, but no others who stuttered. He planned speeches, and oral reports/ plays. He ended 4th grade fluent. We moved to another state, no insurance coverage and a private school that was an awful fit. His stuttering came back and has basically stayed with fluent periods, but any type of excitement, talking on the phone, with store clerks, speaking in public etc... with blocks and stuttering. We went to a nearby University with a SLT program, there they tried to have him monitor words per minute (we are originally NYers and speak fast). This was frustrating and did not make any change. 3. The ongoing process, Speech Therapy plus... We discovered the "Commission for Children with Special Health Care Needs" and a specialist who works there. The services are free, so we have not been constrained by finances and he has received speech therapy there for 2+ years. This year he began using Lexapro and has a Fluency Master. He does best with all three components, and even on stressful days can be as fluent as anyone else. This all depends on the fluency master working and no skipped days for the medicine and has come just when he is about to pick careers, schools, job interviews etc... It's been a "choppy" strategy that has really been more due to providence than planning, but the Internet and continuing to stay as informed as a parent can, is important too.

Ora McCreary said...

Tom - I thought you weren't a fan of Lidcombe. Or have I misunderstood your earlier postings?

Ora McCreary said...

Lynne - I've never heard of Lexapro for stuttering. It's fundamentally an antidepressant, and anti-anxiety drug, I think.

In your son's case, is it intended to affect his speech directly, or does it affect his mood so that he's not bothered as much by his speech difficulties?

Anonymous said...

He's a teenager who stutters and has an ADD dx (affecting grades only this year), so anxiety was the initial reason for the drug. The biggest effect has been with stuttering. Before he began Lexapro, the Fluency Master was effective, but not a real "cure" that he had hoped for. The combination has given him significant periods of speaking free from the blocks and stuttering. If one of the components is missing (because of the organization issues), there is a notable difference.
I had written before about my son and someone thought that his stuttering/ ADD could be due to a neurological event not genetic. Other than 4weeks premature/ my health (brain freeze re: the name--high blood pressure) there was nothing else wrong. Is that enough to have caused stuttering?
The disorganization is from his parents :-)

willme said...

To Ora: Lexapro is a close relative to Celexa (citalopram), also an SUI (see, and some success has been reported by J.P. Brady for the use of Celexa coupled with Xanax (an antianxiety drug) to improve fluency (Brady, J; Ali, Z., 2000, Alprazolam, citalopram, and chlomipramine for stuttering, J. of Clinical Psycholpharmacology 20, p. 287)

Olivier said...

Advice : if you are french parents searching information about stuttering scientific research, go to
"Un Olivier sur Un Iceberg"

: )

Ora McCreary said...

Hi Willme.

I tried to email you a couple of days ago at the last email address I have for you (our exchange of emails on roughly 6/12/07). But Yahoo reports there's no such address.

I had an article I wanted to send you on a topic Tom has sometimes posted on, and you and I have commented on.

Email me again with your current address and I'll send it to you.


Tom Weidig said...

To Ora,

you are mixing up things. I am critizing the trial on the Lidcombe treatment. In my view, the authors and everyone else are just deluding themselves on fluency achievements due to serious methodological flaws.

HOWEVER, that does not mean that I would not enroll my child in Lidcombe, BECAUSE I HAVE TO MAKE A CHOICE. I can either do
1) nothing
2) go to some therapist which some vague notions.
3) do the Lidcombe program.

So I guess I would do Lidcombe with him/her.

I would also do it because the trials have definitively shown NO negative impact!

And intuitively I believe that Lidcombe should be well set up to reduce secondary effects on behaviour, psychological and social impact, THINGS YOU CANNOT MEASURE IN A RANDOM CONTROL TRIAL.

Tom Weidig said...

Hi Lynne,

your son's story sounds familiar: lots of different approaches over the years.

You talk about three distinct times of improvement in your son's stuttering. However in your description, improvements in his speech and handicap associated did not really last, but the severity only seemed to fluctuate? Now he is more fluent while on medication and the Fluency Master. But this comes at the cost of being dependent on the medication and having to stick to using the Fluency Master. Can this be a lasting option for him??

P.S. One thing that might help him on a social level is to get in contact with young people of his age who also stutter. There a web chat rooms and also meetings/summer camps.

willme said...

I wouldn't worry too much about the "cost of being dependent on the medication" too much. The SRUIs are intended for long term usage. Of course, most medications have unintended side effects. For example, SRUIs are claimed to reduce sex drive (an advantage for a teenager?) and for some teenagers may lead to suicidal thoughts. Obviously, careful monitoring is required.

Alex said...

Hey, Tom--this is Lynne's son.

I suppose that when I look at this, I consider the options and known history of my stuttering.

From my point of view, I can: do absolutely nothing and put my face to the wind; continue traditional therapy; wear the Fluency Master; take Lexapro.

Obviously, doing nothing isn't an option for me. Even when I was undergoing traditional therapy, it was a struggle to speak fluently. At best, I blocked frequently and kept pushing through; At worst, I couldn't speak at all.

Traditional therapy has had its ups and downs. At some points, it's had no effect whatsoever--or even decreased my fluency. Other times, it's improved somewhat, but no lasting benefits came of the therapy (with the exception of the therapy in my early childhood). Therefore, judging on past history, it seems that this won't work well for me--in terms of long term achievement.

The Fluency Master is the only therapy that has ever prevented me from stuttering. Not only that, but when I wear the Fluency Master, I notice it improving my fluency. For me, that is huge. Granted, it doesn't work perfectly 24/7, and there are the occasional maintenance problems, but the point still remains. (Additionally, the Fluency Master has been shown to "cure" stuttering after years of use. Of course, this isn't a sure thing. So, in the meantime, I still view the device as an indefinite treatment.)

Concerning the Lexapro, as my Mom stated previously, I took it initially for anxiety. However, it has the pleasant side-effect of improving my fluency, which is very helpful when the Fluency Master isn't working quite right. The effect on my fluency isn't anywhere near as drastic as the Fluency Master, but it still has had more effect than years of therapy.

To answer your question as to weather or not dependence on the Fluency Master and the Lexapro should be a lasting solution...

I have stuttered as long as I can remember. I have stuttered through every breed of conventional therapy. During that time, it took significant effort to express myself--if I could manage it at all.

Taking all of this into consideration, this is what I think: I would rather be dependent and be able to function, rather than return to where I've come from.

MommaWriter said...

[Long time lurker, first time commenter...]
My son, who is only 5 could technically "outgrow" his very severe stuttering. I'd love for that to happen, but I'm not counting on it. His medical history is such that I imagine his speech problems are the result of some kind of neurological insult when he was a newborn (preemie). Based on what things are like today, I imagine he'll struggle much as Alex has. His previous speech therapist suggested his stuttering might be due to Tourette's and our pediatrician suggested starting him on Tennex (a hypertension/ADHD drug also used to control tics).

I was skeptical about putting him on meds, so we opted to send him to a Lidcombe specialist. I'd already read your comments about the controlled trials of Lidcombe, so I take them with a grain of salt, but I didn't see that we had too many other options and I figured it couldn't hurt.

We've been doing Lidcombe for a little more than a month now. I can't tell whether it's really helping or not. But one thing I really appreciate for having gone that route is that we now have a speech therapist who really specializes in stuttering. Our first one was really experienced, but she doesn't see *that* many stutterers. At least I feel like our Lidcombe specialist is really in tune with what's going on...even if she does give us the impression that our son's case is one of the most complicated she's seen! I'm hoping that even if he remains very dysfluent, she'll be able to help him cope with school and other situations...and help us to help him too!

Ora McCreary said...

Tom - thanks for the clarification.

willme said...

Tom said that 80% of children will outgrow their stuttering naturally. I'm not sure what this means. A more appropriate probability measure would be: What percentage of children who stutter at a given age will outgrow their problem? Thus, perhaps 80% of children at age 3 who have this problem may outgrow it, but only 10% of stuttering children at age 8 will. So the probability measure is conditional on age. The question is: Is there any age specific data of this sort?

Tom Weidig said...

Hi Alex,

thx for your well-written response! I kind of went through similar stuff, but I have never decided to move on to medication or the use of a Altered Auditory Feedback device. I will probably give medication a try at some point. Re AAF device, I tried it out but I dont like the background noise, and I did not hear good things about long-term use.

In any case, the best thing is just to try it out and see what's happening! Good Luck.

But one thing that I found useful was to meet up with others who stutter. The meetings were always great fun and interesting. You kind of temporary live in a world where stuttering is not a handicap for communication anyway but the means for social bonding. Once or twice a year, I'll do that.

Tom Weidig said...

To willme,

I was not making a mathematical statement, but rather a "popular-scientific" statement that everyone understands but makes no sense!

I meant that "Of the children who start stuttering about 80% will recover naturally". This is nearly equivalent to saying of all the children at age 3, because age 3 is the typical age of onset.

The 80% is a rough number. Once they see a clinician, the number goes down. Also depends on gender, And on age or time since onset. I think Ambrose did work on this.

My main message is that if your child stutters it is more likely he or she is to recover.

Anonymous said...

The AAF device may not be an AAf device. It detects when Alex is beginning to talk and makes a vibration noise directed into his (left) ear. I think it's supposed to be like his hearing his vocal cord sound and that is supposed to set the (muscle) tone for them not going into a spasm/ block. I should know how it works better than this--I guess that should be my next research task.
It does not have a choral reading effect at all, not with his voice or surrounding sounds. I've seen him dial up the buzz sound in noisy environments or when he's under more stress (phone etc...) and have seen it make a noticeable improvement in his not blocking or stuttering.
Is this what you tried?
Is this just a US item?


DDDmitriy said...

If this has been mentioned before I apologize, but going to conventions liked the FRIENDS Convention or the NSA Convention can be an amazing experience for anyone, including the child. It really is a good beginning step toward desensitization.


hiwa said...

I need some resource about the relationship of bilingualism and stuttering. can yuo help me?my e-mail adres is:

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