speech

[Guest guest]

-----Original Message-----

>I thought when a child can't speak, he can't

>hear also. That they go hand in hand. Is it possible for a child

>to hear but not speak? What is causing them not to speak?

>What is done in speech therapy? Can the child be trained to

>speak?

>When you talk about devices to help with speech, what are

>these? When our children cannot speak, do they understand

>what is spoken to them? Thanks for your help.

Maribeth

Our Hannah can hears quite well, and this is evident by her wonderful

responses to sound and gives us a lot of joy. However, her cognitive

abilities are so delayed that she is non verbal and likely to remain that

way. She has widespread polymicrogyia on both sides of her brain, and many

aspects of her life are affected as a result. Learning and speech are just

two. On the other hand, she shows great pleasure in certain noises and

movements, and communicates her delight with fantastic smiles. Her cry for

pain is unmistakeable, and considering circumstances at the time, we can

also tell a cry that means she is bored, or cranky at being left alone for a

while.

In Hannah's case it was not predicted by anyone, but we knew she would

be severely delayed in many ways. The doctors were not prepared to guess at

what would or would not be affected, so we just waited to see how she

developed.

regards

- Melbourne, Australia; mum to Hannah, (3yo; polymicrogyria,

uncontrolled complex partial epilepsy,

ketogenic diet since 6/00, spastic quad.cp, cortical vision impairment,

possible hearing loss, swallowing and respiratory issues, non-verbal, global

dev. delays, bard button and a brilliant smile)

[Guest guest]

Maribeth

What great questions. I'm looking forward to hearing the " why "

regarding our kids not speaking, or in some cases speaking very

little. I was under the impression that since the cortex is the area

affected by the PMG and the cortex processes higher level functioning

like speech, that was why it is very difficult for our kids to

speak. This is a crude understanding of how it works and I would

appreciate hearing a more scientific version or more in depth

understanding of the process.

Not speaking does appear to be a very common symptom for kids with

PMG. has just recently showed us that there may be some

understanding through words. We have been repeatedly saying " Where's

Mommy? " " Where's Daddy? " and praising her when she looks at one of

us, even if it seems by chance. Now when we say those words, she

will perk up, become quite and look around. Not always finding the

right person but she is looking. It gives us some hope that she has

some verbal processing of language.

(mom to )

[Guest guest]

Maribeth-

I do believe the area of the brain affected has to do with the ability to

speak. But I would never say never. My son Sam (9 years old) has very

little speech, but it does continue to progress. I believe the main issue

in Sam's case is the lack of muscle ability and awareness in the lips and

tongue (the same way that he has difficulty using his left hand). I think

the most effective therapies for his speech have been the oral motor

exercises to help strengthen those muscles and make him more aware of them.

Sam now has many words which I can understand, and more words are getting

clear enough for others to understand as well.

It is entirely possible for a child to hear and not speak. Sam hears just

fine and understands what he hears, although he has always seemed to

understand better when sign language is used in addition to speech. (We have

no idea why that would be, but he is a very visual learner.) It can be very

frustrating for a child when they can understand much more than they are

able to express, so I think it is very important to give a child other means

of communication (sign language, communication device, etc.) Sam's main

form of communication is sign language, but he also has a Dynavox

Augmentative Communication Device.

The Dynavox is kind of like a portable touch-screen computer, and is

programmed to speak when Sam touches buttons on it. It can be customized in

any way to the child using it.

You will hear many differing opinions in the area of speech, mine is to give

your child as many ways to communicate as you can, and your child will pick

what works for him. I would highly recommend using sign language with your

son as much as possible, I know kids can start to pick that up from a very

young age.

I hope this is helpful to you; I wish you all the best!

Christie, mom to Sam (9 years old, Bilateral Perisylvian Polymicrogyria)

[Guest guest]

Hi Maribeth,

I am a Speech pathologist currently working with a child who has a form of PMG.

As I knew very little (nothing) about this desease before I met this wonderful

boy, I really am not an expert. But I wanted to tell you that " Jon " does have

some sppech and some sign and uses a " Dynavox " machine. Although many deaf

people have difficulty or are unable to speak, being unable to speak is not

relatesd to deafness. As many other motor skills are affected in children with

PMG, it appears to me that the motor area of the brain is affected.

I may be somewhat biased by my profession, however I would take my child to a

Speech/Language Pathologist for an evaluation before I went along with This

neuro's prognosis. The more I hear (read) these e-mails from the people in

this group, the more I distrust a general prognosis. These kids can and do

make wonderful progress.

[Guest guest]

First of all, I find it very disappointing that doctors make statements that

are so definitive in the face of conditions or disorders that are not fully

understood or the severity is not known. One thing I've learned in my 37

years on this planet is to never say never. Speech is so complex, as is the

brain, our bodies, etc. I know that receptive language for a speech disabled

baby or person is usually a lot more developed than their expressive

language. I know this because I taught an elementary special ed class for

kids with speech disabilities and from my wonderful 16 mo. old daughter who

uses no spoken words, but constantly vocalizes and constantly responds to

actions and can follow directions. I'm not familiar with augmentation

devices although I've seen reference to them several times. Kayla's hearing

is fine and we're hoping that Kayla will someday have some spoken words. A

person's hearing can be fine and they can still be completely non vocal or

have speech difficulties. Sometimes it's almost all mechanical, but more

often than not there is a pathway/brain problem. Hope this helps.

Cherese, mom to Kayla, BPP

[Guest guest]

Hi, Cherese again about speech questions. Speech therapists I've seen use a

variety of techniques to encourage children. Older kids usually get more

academic stuff, like picture books, or practice with a patented program that

the therapist uses. Kayla's speech therapist uses picture books, objects and

a lot of repeating, imitating, etc. Her OT actually shapes (touches) her

face and lips for sounds. I do a combination of both. As for what

non-verbal kids understand, again, usually alot more than they can express.

Of course every child is different and disabilities have a wide range of

severity as well.

Cherese, Kayla's mom

[Guest guest]

Yesterday in a Homeschooling COOP class our Olivia (13 on Friday) gave a 2 minute speech on Homer. Her teacher gave her an A! This teacher is GREAT and teaches very creative classes to those kids who learn creatively (hands on learners), she was very impressed with Olivia's ability to remember and not use any cue cards. The only thing she forgot was the name of the food of the god's that she brought for the class to eat (it is ambrosia). We are very pleased with the opportunity for Olivia to be in an encouraging environment and to help the other kids realize how smart people with DS are.

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