PPMD Community

Speech and Communication Delays

My son Ryan is three years old. At present, he has no verbal communication and very primitive non-verbal skills. We moved from North Carolina to Florida in June, and since that time, the 10-15 words that he did have, have completely vanished. Now as I said, he has NO words. The neurologist assured us that this was part of the DMD. He said that because dystrophin gene is so large, it can affect speech and communication as well as affecting him physically. Ryan is in a special needs preschool environment through our county public school district. He is receiving speech therapy, occupational therapy, and physical therapy at school. And OT and Speech through a private rehabilitation facility outside of school. He really hasn't made any significant gains in the area of speech.
My husband and I are really worried that he may never regain his words...and that we may never hear his sweet, little voice. I have searched through the message boards, and have not really seen any other posts on this topic. I was wondering if any of your boys had significant speech, language, and communication delays. And if so...what else can be done?

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Permalink Reply by carrie on December 4, 2008 at 1:00am

Our son had significant speech delay like many of yours. he started speech therapy at 2. He is now 7 yrs old and is a chatterbox, some problems with pronunciation/articulation but very minor and everybody can understand him. He is not on the autistic spectrum and no longer gets speech therapy. Dont worry, his language will come.

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Permalink Reply by Karen Barnett on December 4, 2008 at 1:27am

My youngest son who does not have DMD had significant speech delays as well. I got him services from the age of 2. Also tubes put in the ears. He is 3 now and his speech has made huge strides. He never shuts up now and is quite the chatterbox. I agree, the speech will come. I have gone through this with 2 boys now. It gets better but is terribly frustrating, especially in the beginning.
Karen

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Permalink Reply by Jennifer Collier on December 4, 2008 at 6:22pm

Thank you so much for all your input and advice. It really helps to know that some of your little guys had speech issues when they were little as well. At least I know we're not alone, and that Ryan is in good company. :)

Jennifer

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Permalink Reply by djamel fathi on December 4, 2008 at 7:09pm

hello it zahia fathi my son mohamed he is 7 y he has dmd ,he has delay in his speech befor i don;t understand what he say when he started pre school we don;t know he has deseasse ,but when he has lot trouble in his speech we think because it the secand language ,but know he is doing lot better we can anderstand what he say,but he steel has therapy speech in school
your son does he have freinds around him because he can learn the speech from another kids same age of him,whith a nother kids he can pay attention he can listen to them more he listen to adult,i learn that with my son when he is whith me in home he don;t learn anything just when he started to play with other kids,i hope so your son he get better and you listen every day to his sweet speech

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Permalink Reply by Carolyn Morrison on May 9, 2011 at 4:10pm

I am wondering if speech problems are directly related to DMD? I saw in another post that someone's neurologist said speech problems are related to DMD since the dystrophin gene is so large. My 8 year old is still in speech (now end of 2nd grade and this is his 3rd year). His speech therapist told me today that he has made no progress in the last 6 months. She wants to give up. I said, well, in the big picture, who cares, he will out grow it. She then told me no, he will not outgrow it, and his speech will never get better with his L and Rs if he doe snot put effort into it. I am not sure what to do? Anyone have these problems as well?