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?

Views: 170

Reply to This

Replies to This Discussion

My son, Sam, who is 6, has been receiving ST since he was 20 months. At that time he had no words at all, his twin brother was pretty much right on track. Sam now has a full vocabulary, but has a lot of trouble with articulation. There's also many times in class and in public that he just won't speak because he knows he doesn't/can't say it "right". It was a very slow process at first, but has gotten better. We seem to be at a bit of a plateau right now, even with increasing his ST sessions at school.

I would just keep at it. Does he receive any ST outside of school? Not sure what your insurance covers, but you might want to look into a little extra outside of school.
Ryan tells us what he wants through gestures. He pulls our arms or hands in the direction of what he wants. If he wants a drink, he takes us to the fridge. If he wants to eat, he goes and stands next to his chair at the table. I guess we anticipate what he needs or wants. He cries and screams when we don't understand right away, or if we make a wrong guess. We are trying pictures as a way to communicate and he does know the sign for "more," but will only use it occassionally.
Are you teaching him sign language until more answers can come to you? My oldest doesn't have DMD, but he didn't start talking until he was almost 2. We did teach him sign language and it relieved sooo much frustration. We bought a book called Baby Signs. It isn't necessarily for babies, but it just teaches simple signs. Mostly the ones a child would use on a daily basis. I'm sure he must sometimes get frustrated and it sure doesn't help what you're going through.

Alexander is now 10 and has a huge vocabularly, but an occasional stammer. I came home one day when he was not quite one, he said, clear as bell "Hi, Daddy," and really not much of anything else for another year or so. He really did not start speaking sentences until he was four, and we almost held him back from kindergarten because his verbal skills were so limited. Like everything else about his motor skills, he kept improving steadily, just more slowly than his peers. I think this is just part of the deal.
I hope it does get better. This disease is hard enough on him. I know if he had the ability to communicate, it would definetly be a little easier on him. We jmust really haven't seen much progression. If anything, he has actually regressed since our move from NC to FL.
My son also had speech and language delays. When he started preschool at age 3 he hardly talked. One word here, another there. I remember just wanting him to tell me about his day but he couldn't. I look back and now know why he was such a winer when he was little--he was frustrated not being able to communicate properly and his body fatigued more easily. He was not diagnosed until age 5 so we had no idea what was really going on. Now he is nearly 7 and talks all the time! He still has Speech therapy but just for articulation now. He also gets OT, PT and receives special ed.
I imagine the move for your 3 year old has created some amount of stress for him due to the big changes in his life so perhaps that has to do with the loss of words. His speech will come, it may just take a little longer than a typical kid. From what I understand, speech delays are an early indicater (along with the physical stuff) of DMD. Hope that helps.
Jennifer, James was delayed in speech and communication. In fact, this was how we had him diagnosed, but that's another story. Anyway, we took him to a wonderful speech therapist and she told us, amongst other things, to pretty much "force" james to use his words as he had become a little lazy with his speech. We knew he could say these things, as he had said them previously, but at 2 years of age he was suddenly quiet and didn't like to sound out any new words. So we forced him to talk. By this, I mean that whenever he wanted something he had to use his words. He hated it at first, as it meant he couldn't get what he wanted, but bit by bit the words started coming and new words started forming. Now, we can't shut him up and we love it!!
My son Lucas is 3 1/2 years old. When he was 1 1/2 years old he started speech therapy, by the time he reached the age of 2 1/2 he was diagnosed with autism (and still only had 20 words--that he rarely used). Once he was diagnosed with autism, he switched to a speech therapist who specialized in in children with autism--she was amazing. She had really good ideas and things that I could work on with Lucas between appointments. Within 6 months he had well over 100 words and now he is starting to talk all the time and is using small sentences. We are so happy with his progress, hopefully things will fall into place for you as well.--Jennifer
Hi Jennifer,
Ryan is 3, and how many months?
My son Alec started speech therapy through the school at 2yrs+8mos. I think he was saying maybe 2 words. He recieved some speech therapy through the summer. No change then. He started pre-school the next year and by the end of the year he was saying some words, but still not putting them together. (this was at 3yrs+9months). So, he recieved more help that summer. His teacher said that someday things will just click and he will start talking a lot more. During the summer I was constantly counting how many word he could put together. By his 4th birthday he was putting together 3 or 4 words. Finally!!! He is now 4+ 4months. He is saying full sentences and repeating everything I say. Correct me if I am wrong, but I think he was so focused on trying to walk, and keep his balance, and all of the other physical things that he is behind on, that his speech just came last. He is still quite delayed with his speech especially with the articulation. I think one thing you could try is a new toy like a Little People's bus, or farm or something that would spark his interest. Bring it out for a special one on one time. Keep the people in your hands and when he says a word give him one person to play with. Let him play a minute and take it away and try a new word. If he says it give him a different person. When you are done with the "word game", hide the toy. When you bring the toy out the next time, he wil l be excited to see it again, and a little more apt to working with you. Oh, another thing is the way he is sitting. Have him sit in a chair, at the table with his feet on on the floor. This way he can focus on the toy, and not on his balance. Getting Alec to talk was so hard at first so try not to get too worried, it will come in time. Alec turned 4 in July, and people are finally understanding what he is trying to say.
Wow, I didn't realize how many of us have gone through this. My son now 9 will be ten next month also went through that same experience when we moved from Georgia to Florida when he was three. The move was a mere month from the doagnosis of DMD. He barely spoke at all and never responded to his name untill he went to preschool. He had an awesome teacher that year. By his fourth birthday he made up so much ground in his speech it was amazing. This paticular preschool teacher was also able to potty train my son. Her name was Mrs. Hill and i will always remember her. Christian has DMD and has also been diagnosed with autistic tendencies. Coincidently our speach therapist that he had before we moved was the key to getting the DMD diagnosis.
Yes! Matthias had quite a bit of trouble. He started making word like sounds at about 1 1/2, but then stopped in frustration until 3. However, Matthias could communicate clearly with me through pointing and grunting noises. At 3 we lived with some other children for a couple weeks, and he realized they weren't going to listen to him unless he spoke their words. So he made an effort, and started adding a couple words per week. At one point a couple years later we went on an exciting trip, and he started stuttering badly. A friend told us to give it time, if we listened patiently and didn't rush him, it would straighten out on its own. She was right! Don't worry, Ryan will eventually talk to you again! At 9, Matthias can communicate quite well when he wants to (though not always when I want him to). He still struggles with writing, but his reading is coming along now. All the best!
Hi, My son Francis 10 was diagnosed with DMD in 2007 and this past August 2008 he was diagnosed with Autistic Spectrum Disorder (ASD). Francis has been going to school since he was 31/2 after being seen by our school district special education department. They found that he had developmental delays across the board so at age 31/2 put him on a bus to go to pre-school. He has had alot of behavior problems/issues and I felt for the past few years that something was being overlooked like a huge elephant in the room that no one noticed. I then took him to a Neuro Psychologist and he then was diagnosed with ASD. I now all the pieces of the puzzle and am starting to learn how to help him better, I'm not perfect, but I'm trying. I just wanted to suggest that if you are having concerns that maybe seeing a Neuro Psychologist might be something to look into. I'm not saying it is the answer, but anything that comes your way might be worth taking a look at that will benefit our boys. The best of luck to you and your son.

Reply to Discussion


Need help using this community site? Visit Ning's Help Page.



© 2022   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service