| about 'Oral motor Therapy' |
| (August 14, 2000) (by Sandy Goodwick) ANYONE (from infant through adult!) who (1) has Moebius syndrome and (2) experiences eating difficulties (incomplete lip closure, poor tongue mobility, weak jaw musculature or (3) experiences speech misarticulation ('muffled speech', etc.) NEEDS TO READ THIS! I went to Sara Rosenfeld-Johnson's workshop ("Feeding and Speech Clarity Issues in Moebius Syndrome") thinking I would find information useful for me as a teacher (I work with preschool kids affected by physical disabilities - frequently my students have trouble eating and are g-tube fed, etc.) I was 'blown away' by what I learned! Not only was this workshop BY FAR the BEST I have *EVER* seen or heard re: feeding/speech issues, it was of great value to me as an adult with Moebius! If you did not attend the conference, please check out the website - http://www.oromotorsp.com ("Innovative Therapists International"). I have NEVER, EVER seen such a well-designed plan for working with kids that have feeding or speech 'issues'. Not only have I ordered the books to use in my own classroom, I will also be ordering a whole array of materials because I have (through the state of California) access to "low incidence funds". I suggest that ANY of you parents whose kids have speech or feeding concerns check with your local educational agency to see whether your child qualifies for any special funding. If you have an IEP (or IFSP for kids under 3), the document may mention that your child qualifies for a particular type of funding source. But if there's nothing listed on the document, call up the administrator (hopefully he/she is knowledgeable re: special funding) and ask. OR, contact your state educational agency. I would INSIST (it's worth a try!) that you ask for (and get, on the IEP) training in methods as detailed by Innovative Therapists International. AND insist that your child's speech therapist/occupational therapist be fully trained in the techniques. OK, .... now for all of us adults with Moebius. We have gotten accustomed to what we think is facial "paralysis"... AHA! - WE MIGHT *NOT* HAVE A FACIAL PARALYSIS BUT RATHER A FACIAL *PARESIS*!!!! (WEAK muscles but NOT paralyzed ones!) When I heard this I was 'blown away' (again!) - So we need to get Sara Rosenfeld-Johnson back at the NEXT conference and do a workshop ENTIRELY for KIDS, TEENS AND ADULTS WITH MOEBIUS! In other words, we may be able to "clean up our act" with better lip closure or speech production! (And you thought all that stuff was 'kid stuff'! HA!) |