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From: Judy Butler
Date: 10/12/03
Time: 11:15:33 AM
Remote Name: 208.244.111.105
Dear John and Sharon,
I've met John via stutteringchat, so I really enjoyed finally meeting Sharon (his better half?) John, you know I am just kidding. I am an SLP who works with children who stutter. So I spend lots of time talking with Mothers (and I capitalize that letter M on purpose.) Sharon writes about the strain of having a child with undiagnosed difficulties and I see that strain on the mothers of the preschoolers I see. They hear their child stuttering and suspect that something is not right. But doctors and friends brush it off as something developmental that will pass. Even adult PWS tell them to ignore it. It is the Mother who often contacts me because she has the time and therefore takes on the role of researcher and advocate. Sharon says it took time to come to terms with the extent of Mattie's difficulties. I see this also. Unfortuntely, for a few, I watch the stuttering get worse as the years go by and the parents are learning about what stuttering is and what kinds of help are available. Then, by like 2nd grade, everyone has accepted the stuttering...but now I find it more difficult to treat. I see conflict between family members over the stuttering. And I try to help parents with John's comments that they love their child to deistraction but occasionally it can be hell. Most of the children I see have a parent who stutters and they feel guilty about the possibility of passing on this trait. I try to encourage parents to make their love very explicit so that child does not interpret parental frustration as anger toward the child.
I am looking forward to sharing this article with families because it addresses so many emotional issues. I especially love John's opening paragraph about the mobile. It is such a clear visual analogy.
My question for Sharon. Could you share some more about how you built and made use of a social-emotional support system? What was it like seeking help from family, friends, organizations for Autism, etc.
Thank you for this article, Judy