Wednesday, June 19, 1996

Stuttering in children of PWS's

I think we have a HUGE opportunity to do something here. The following points have come out loud and clear:

1. The idea that early intervention may be the best opportunity to prevent stuttering seems to be one that both "psycho-environmentals" and "organicists" (I am one) can agree on.

2. Most parents who don't have experience with stuttering tend to follow the advice of pediatricians and "just wait"... This makes pediatricians happy since being right 90% or so of the time is pretty good track record...

3. A small percentage of the same parents will bring a child to a stuttering clinic and simply trust that the treatment will be appropriate.

4. Ironically, parents who stutter aren't in the mood to either trust the pediatrician (we were the 10% that got stuck with stuttering) or the clinic (real competence with stuttering has seemed all too rare for adults - present list excluded - ... will it be easier to find for our children?).

Is it any wonder that parents who stutter(/ed) are tearing their hair off?

Just to relate my own experience: I have a 4 year old. About 1 or 2 years ago he started having occasional whole word repetitions, seemingly without effort or frustration. In one instance, however, the repetition seemed to go on forever... He still seemed to take it in stride, but my wife looked at me and my heart sank to my feet. I was bracing for a rough going from that point on, but instead he settled into his previous occasional effortless repetitions. I sought advice from an SLP on this list (to whom I will be eternally grateful).

His advice included things I could do (and which I did, although fortunately the need seemed to remain relatively rare) and the notion that the approaches different therapists will take to dealing with children indeed vary, and he could not endorse them all.

So here is the rub. It's not just a matter of PWS trusting or not trusting SLPs. If you put 10 SLPs in a room and asked how they would deal with your child your would get ...well probably not 10 substantially different answers, but at least a couple of "camps" with fairly intense disagreement. Now, this is only natural and should come to no one's surprise. As adults we have the "luxury" to try out what works for us and there are members of this list that would swear by one camp or the other. The problem is that with children, we are told, the "window of opportunity" closes rather quickly, and all therapy "camps" are buoyed by the high success rate due to spontaneous recovery.

By this time I have little hair left... SO WHERE IS THE OPPORTUNITY I mentioned at the beginning? These I my suggestions:

1. Stuttering organizations should conduct an "all out" educational outreach to parents and teachers.

2. SLPs should make their approaches and philosophy regarding treating children as explicit and clear as possible. If "labels" are possible all the better, but this information should be made available in a national directory. The idea is that parents should be able to look at this directory and make an informed decision on the type of therapy they want their children to undergo. Again, there is no time for trial and error here... so, we need to know as much as possible in advance. Of course if all SLPs could agree on what's best and possibly create a specialization area in childhood treatment, that would be great too!

Fundamentally parents ought to be told not only that it's a good idea to bring children to therapy ASAP, but also WHAT types of therapy are available, WHO is doing it and where (Ira would surely add "how good it is" but I am sure that would be too much to ask of any humans...).

To end on a happy note, my child continues to talk quite happily. At this point he shows some occasional very minor mid-word hesitancy (as if he needed to catch his breath to finish the word) and no repetitions. He talks non-stop sometimes even in Italian (which I speak to him constantly). I keep being alert, but my worry has considerably lessened.

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