Hypotonia Support Group

Mine will be 2 in a few weeks & not a word. what's worse is she was starting to talk at 9mo, & stopped. A few other things stopped and have since come back, so we're hoping. Does he have any known issues besides low tone? Mine has delayed myelination, so we know what to try for, but her MRI hasn't changed much in a year.

Do you have Early Childhood services? They go until 3years old. Then in some places there is a program that allows kids with issues to go to preschool, where they can get speech for free. We just started speech, & I'm really hoping she catches on to it.

I do have a friend whose child had only one delay and that was speech. He had speech therapy and they read with him all the time. Nothing at all, until 4 years old he just started to talk. His brother had no problems talking.

ask about early intervetion

I would call your local school district and ask about he preschool program....my son was about three and a half before we were able to understand him...he was DX with apraxia at 2...we did speech for a year and when he turned 3 put him in the school districts preschool and with in a few months he was talking like crazy...the mix of kids talking and group therapy was the key for us...now he is going to first grade and is right on track with the rest of his class....we also did some OT to address some of the motor skill problems.....but it didnt take long....and now he knows that sometimes he has to work alittle harder to make some things happen but noone can tell that anything was ever wrong....good luck...and dont let it get you down...just start early and nip what you can in the butt.....

Thanks all. I have been out of town. We are in a preschool program, but the school didn't want to give Tyler speech. They said that his cognitive dev. is equal to his speech so there is no discrepancy. The neurologist was disgusted with this. He told me there is no way that is true. That would mean Tyler's cognitive age is under one....which it isn't. After much fighting, he gets speech through the school, but during the IEP meeting, the speech teacher felt the need to tell me he shouldn't be getting speech, but they were going to give it to him anyway. So insulting.

My insurance will not pay for speech. They only pay if there was speech and it is lost. I'm trying to get services for him, but failing miserably. I am really afraid that he will end up being non-verbal.

Thanks for the suggestions.

regarding the kids who dont have words....... at 17 months now and my son just started to experiment with sounds - da di, ba, bra, ma etc - so thats okay but what worries me is the total disconnect he has with using sound or gesture to help him help himself. i have been signing with him for a year and to no apparent feedback. he does not show dislikes or preferences for food or toys so we dont get to see him reject by turning his head away or spitting anything out (he eats EVERYTHING in his wake).
what he has is a high pitched scream which can mean "i really want this" or "i really dont want this" - not very helpful.
i know that shaking or nodding of the head or pointing is a form of expressive language as is using other signs or initial words. so far his language is this shrieking yell or smiles. he is getting evaluated for speech therapy next week so hopefully that will be good for all......
i am an immigrant to the USA and all through this process i have been so grateful for the services in my area (pacific northwest). not only are they free to all kids with DD under age 3 everyone i have dealt with has been so wonderful. i have often thought if i was back home that i would not get this quality of care for my son.
i am so sorry for those of you that have to fight tooth and nail to get what your kids deserve.

Your son sounds so much like Tyler. We tried the signs too, nothing. I think because it takes muscle coordination to do just as if they did talk. It took Tyler a REALLY long time to gesture, point, etc. He does a fairly good job of expressing himself now, just without words. I think the gestures will come. I wouldn't worry too much. I think Tyler was two or a little older before he really did much in the way of using other means to communicate. He does well now....I am just dying for words....there are a few, but I want more!!! I want mama. (Which he says and uses appropriately, but not consistently. Hang in there.

My son Brandon will be 2 in september and has only a few words that he uses consistently. We have him enrolled in speech therapy through early intervention which is a government run program so no insurance required. We have only had 3 sessions so far so I am not sure how well it is working but they have told me to give him foods that are tough to chew and to massage the insides of his cheeks with a tooth brush to stimulate the muscles in his mouth.

My little guy is 13 months and we've been told since birth that he would have speech delays because the hypotonia also affects their oral motor coordination. If your tongue muscles can't physically form the words, it's difficult to speak. How much we've learned. We haven't started speech therapy yet, but we are doing oral motor 'exercises' with his occupational therapist. We also have purchased some inexpensive oral motor therapy 'toys' to play with: the NUK brush which we dip in dry Country Time Lemonade at meal time, an electric toothbrush, a "Giggler" and I think the other thing we bought recently was called a "Grabber". Let me know if you want more suggestions as this is so tough to figure out and really hard on us parents.

PS: I have also heard that under 3 they are to receive services through early intervention and then after age 3 through their preschool. I have learned in the last 13 months that I am Jack's best advocate and the only one (besides his Dad) who can and will fight for him. So push back if you are not getting the answers that you want! Hang in there!

To Tylers Mom
You need to go back to your school and fight to have your son receive speech more than 1x a week
You also should know with my son who is 5 he did not speak until 3 1/2. I will tell you why. He was not walking and once he mastered that which was when he turned 3 he than started to speak.. They can only master one task at a time. Now I can't get him to shut up!! :) our next step is for him to write his name..