I knew Wolf-Hirschhorn Syndrome involves significant speech delay but up until now I believed it was related mostly to developmental delay and that Brodie's ability to speak would be related to the degree of cognitive delay that he has. Only after another meeting this week with Brodie's geneticists did I begin to realize that there are specific neurological causes of speech delay in Wolf-Hirschhorn - they described a condition called speech apraxia which is an impairment of the brains ability to send signals to the mouth- it is not really related to cognitive ability- and this specifically is probably why Brodie's chewing function is so poor and why he knows so many words but cannot say anything but the shortest sounds of ba, ma, da and he imitates us in every way EXCEPT with his mouth and cannot repeat mouth movements he watches us make. I feel a little stunned with this realization and am surprised we didn't come across this understanding before with his doctors, I have asked so many language/speech questions and we've even had several speech evals at different places and never heard the term apraxia before now and it explains the nature of Brodie's speech development so far to a "t". But we are now advised to begin aggressive speech therapy with a therapist who specializes in speech apraxia or sometimes called dyspraxia- probably 4 days a week, 5 if we can find enough openings. His current therapists are changing their whole approach to address the apraxia. Are any of your children seeing therapists who specialize in apraxia? How many hours are they in speech therapy and what have been the most successful techniques for helping them progress? Also are your kids, if they are older, signing? using a picture system?
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