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?