Re: Hi guys.. question about non-verbal children

[Guest guest]

See, it seems there a few of us who's kids DID speak way back when and then

dropped it

all. NEVER has said any words. I don't know what would be easier... I

know I know..

they are both hard paths.

I just find this truly so facinating... and again, wonder what is up with my man

here.. and why he can't do any of it. And it's hard to do oral motor stuff where

he would

say mimick what I do, because he doesn't mimick at all. I will get in his face

and say MAMA

and put his hand to my mouth, like Hellen Keller, and then put my hand to his,

and stuff

like this... so he can feel it somehow... I figure this might work because his

vision is poor..

but nothing... nada... zip.

I am glad I got alot of responses here though.. you guys have once again let me

know I am

not alone and I can come here to ask questions!!!

goes to the hosp tomorrow to have another eye exam and to confirm/deny

the

possible glaucoma they think he has... so... we shall see how that goes too.

thanks again guys!

A.

> > >

> > > I dream of the day speaks as well. She says sometimes,

> only in

> > > babble, ma, but thats is it. And just nonsense sounds, ya know?

> The

> > > last time she said dada was before her heart surgery at 6 months

> and

> > > then the Autism kicked in. She cannot speak at all and she does

> not

> > > sign, so its always a guess to as what she's thinking or feeling.

> > >

> > >

> >

>

[Guest guest]

I have been catching up on the listserv--- this question of non-

verbal kids. . . my son is pretty verbal. He has echolalia and has

been pretty much all his life. I do remember when he was really small,

under 3 years, he could approximate " I love you " with " Ah ba doo " but

then any speech seemed to go away as he seemed to be concentrating on

growing in other areas. DJ (age 11 now) had severe medical problems

after birth - 2 heart surgeries (one being open-heart), abdominal

surgery, 2 bouts with RSV in 3 years that required entubation, and an

11 month long stint with a tracheostomy tube and positive pressure

ventilator. I think everyone attributed his lack of speech at the

time to all the medical interventions he had. It certainly

contributed to his feeding difficulties: still g-tube fed, and only

willing to accept a small amount of pureed food by mouth. But

listening to those sharing here I have learned that much of his

behavior could be attributed to autism. We have yet to have a ddx,

but we are still exploring our options. Dj started echoing language

at about 4 years. We would just say what we anted him to say, he would

scho and then we sould praise his efforts.In the past few years DJ has

begun to use some speech appropriately, but still has a hard time

saying what he needs. We just learn to read other indicators, body

language, what toy he is hanging out under when standing under the

shelf we keep some toys on. He learns and remembers peoples names,

and the names of things: dog, ball, etc. but he will not ask for the

things he wants, like " ball " when he wants it. His vocabulary is

pretty extensive, because he echos just about everything you say. And

he likes to sing with me and fills in words when I stop and leave a

space for him to " fill-in " . I know it must be agony for you whose

kids are nonverbal. But sometimes even when there is some language

you are still left wondering what is going on in their heads! Thanks

for bringing up the subject, tho'. I'm enjoying it.

Donnell (Mom to DJ age 11)

>

[Guest guest]

In a message dated 9/14/2006 9:35:44 P.M. Eastern Standard Time,

momof3oneds@... writes:

And it's hard to do oral motor stuff where he would

say mimick what I do, because he doesn't mimick at all. I will get in his

face and say MAMA

and put his hand to my mouth, like Hellen Keller, and then put my hand to

his, and stuff

like this... so he can feel it somehow

We do this too. We also do what we call *putting words into Maddie's

mouth*....we put our lips right on hers and say words, like Mom mom, Dad, ball.

Obviously, a therapist can't do this....LOLOL I also put her hands on my

throat while talking so she can feel the vibration. And no, nada word comes

out from her lips...but we still try. BTW, I have *mimicking* and

*learning to imitate* on Maddie's IEP. I've told the team that I believe

imitation is the key to learning for her. She does imitate some things.

Things I do are blinking, opening eyes wide, opening mouth, clapping. She

loves

this stuff...it's kinda like teaching imitation via Floortime...You know,

being animated and *teaching with affect* (a big Greenspan phrase). It makes

for great interaction.

Donna

[Guest guest]

I am one the members that does not post very often, however having a

dual dx child who is now 21 yrs old I have gone thru much if what

your are just coming to. was never really verbal but would

say words once in a while. I believe the problem with our kids is

that speech requires a large amount of focus just to say one word.

My wife and I found that simple signs help Josh to focus when he

tries to speak. While the number of words he uses is still not great

we still ask he to at least try speech to make his needs known. We

also find that giving choices helps relieve frustration when he

tries to tell us what he needs. Choices can be made several ways.

When he was at school they used a picture book. At home or when we

go out to eat we simply use our hands to represent choices such as

what kind of drink he wants. It does take a while to teach

sign/speech so choices is a great help. If he wants something and

can't get one of us to understand he will sign for the choice

option. hope this helps

Wayne K

DAD to - 23-DS

- 21- DS/PSS-NOS/OCD

Doing your best means never stop trying

>

> Ok.. is 8 and still totally non-verbal. Do any of you have

older children that are still

> totally non-verbal? Is it JUST the Autism? Or was there anything

else going on? We have

> had evals before and year after year I realize it's not that

can speak and chooses

> not to, he truly CAN'T... so I keep wondering if medically if all

is ok. I am 100% ok if he

> NEVER speaks.. but I guess I always wonder the " why " part, for

peace of mind.

>

> Anyone else in the same boat?

>

> A.

>

[Guest guest]

In a message dated 9/15/2006 12:21:07 P.M. Eastern Standard Time,

gldcst@... writes:

.....I still think you have to be the DS-Aut " whisperer " to get them to do

the exercizes without losing a finger but then what's a little digit in order

to help our kids LOL

LOL Sherry. Maddie's private OT used to massage inside her mouth all the

time. Maddie loved it.

Donna

[Guest guest]

In a message dated 9/15/2006 2:23:34 P.M. Eastern Standard Time,

gldcst@... writes:

When I told her about maddie and her continual double dribble she looked at

me like I was lying!

LOLOL Sherry. I know. People never believe me, and so her teacher took

her picture doing it. You've probably seen it...well, if you have Joan's DS

nutrition handbook. Maddie's on page 252 or something.

Donna

[Guest guest]

Adrienne

<<And it's hard to do oral motor stuff where he would

say mimick what I do, because he doesn't mimick at all. I will get in his face

and say MAMA >>

Hi....Oral Motor isn't about mimicking unless you have been led to believe that

by your SLP.(which is highly possible they don't like to do OMT as a

rule....see below) It's about desensitizing the insides of the mouth and

determining where he has actual muscle and physical problems....then you do

exercises in a specific order (like you....NOT me....would do at a gym:-); easy

ones then building up to more repetitions. The mimicking thing is mostly what

Regular Speech is about and I agree it's pretty impossible when, first, they

don't mimic, and second there may be a physiological reason why thay can't

mimic. OMT addresses the physical part without speech. It's actually more of an

OT thing. Both together are what is recommended.

For example is extremely sensitive on the " alveolar ridge " ....that first

ridge you come to behind your upper teeth? So if she refuses to touch that with

her tongue she will never be able to say a /t/ or a /d/. We do desensitizing

exercizes with a toothette. She could never say mama after all these years so

there is an exercize to do where you hold a tongue depressor between your lips;

there are straws and horns that you gradually work up to. and bite blocks to

increase jaw strength.

All this said....I still think you have to be the DS-Aut " whisperer " to get them

to do the exercizes without losing a finger but then what's a little digit in

order to help our kids LOL. PS just because I know this doesn't mean I do it :-(

and neither Our SLP or OT wants to.

Sherry

[Guest guest]

Donna.. I was just reading online about the " floortime " stuff... does your

school actually do

it or you just do a form of it at home?

can't mimick words but he can mimick a few things. A few simple signs

when he

isn't exicited LOL... and some songs... we do find that music therapy and

singing helps

wiht mimicking. It seems he picks and chooses.. usually he won't even clap when

you do

but lately he is! ;D

A.

>

>

> In a message dated 9/14/2006 9:35:44 P.M. Eastern Standard Time,

> momof3oneds@... writes:

>

> And it's hard to do oral motor stuff where he would

> say mimick what I do, because he doesn't mimick at all. I will get in his

> face and say MAMA

> and put his hand to my mouth, like Hellen Keller, and then put my hand to

> his, and stuff

> like this... so he can feel it somehow

>

>

> We do this too. We also do what we call *putting words into Maddie's

> mouth*....we put our lips right on hers and say words, like Mom mom, Dad,

ball.

> Obviously, a therapist can't do this....LOLOL I also put her hands on my

> throat while talking so she can feel the vibration. And no, nada word comes

> out from her lips...but we still try. BTW, I have *mimicking* and

> *learning to imitate* on Maddie's IEP. I've told the team that I believe

> imitation is the key to learning for her. She does imitate some things.

> Things I do are blinking, opening eyes wide, opening mouth, clapping. She

loves

> this stuff...it's kinda like teaching imitation via Floortime...You know,

> being animated and *teaching with affect* (a big Greenspan phrase). It

makes

> for great interaction.

> Donna

>

>

>

[Guest guest]

thanks Sherry.. it was me that thought it was all mimicking... all on my own

LOL. I

understand a bit more. I have been talking to our OT about some other sensory

things and

I am going to ask more about the oral motor stuff. We will be moving and

changing

districts so I will also keep this in notes so I can ask them too.

I find ST and OT and each time we move or change school, each approach is SO

dang

different EVEN if we have something specific on an IEP and even though I

advocate very

well or as well as possible for . I just keep trying to get my point

across!!!

A.

>

> Adrienne

>

> <<And it's hard to do oral motor stuff where he would

> say mimick what I do, because he doesn't mimick at all. I will get in his face

and say

MAMA >>

>

> Hi....Oral Motor isn't about mimicking unless you have been led to believe

that by your

SLP.(which is highly possible they don't like to do OMT as a rule....see

below) It's about

desensitizing the insides of the mouth and determining where he has actual

muscle and

physical problems....then you do exercises in a specific order (like you....NOT

me....would

do at a gym:-); easy ones then building up to more repetitions. The mimicking

thing is

mostly what Regular Speech is about and I agree it's pretty impossible when,

first, they

don't mimic, and second there may be a physiological reason why thay can't

mimic. OMT

addresses the physical part without speech. It's actually more of an OT thing.

Both

together are what is recommended.

>

> For example is extremely sensitive on the " alveolar ridge " ....that first

ridge you

come to behind your upper teeth? So if she refuses to touch that with her tongue

she will

never be able to say a /t/ or a /d/. We do desensitizing exercizes with a

toothette. She

could never say mama after all these years so there is an exercize to do where

you hold a

tongue depressor between your lips; there are straws and horns that you

gradually work

up to. and bite blocks to increase jaw strength.

>

> All this said....I still think you have to be the DS-Aut " whisperer " to get

them to do the

exercizes without losing a finger but then what's a little digit in order to

help our kids LOL.

PS just because I know this doesn't mean I do it :-( and neither Our SLP or OT

wants to.

>

> Sherry

>

>

>

>

[Guest guest]

<<LOL Sherry. Maddie's private OT used to massage inside her mouth all the

time. Maddie loved it.

Donna>>

ooooh that Maddie! We were working on trying to get jamie to dribbble a ball the

other day so I spoke to our OT about it and she went into all this detail about

how advanced a skill it was and how many processes were involved in doing it

correctly. When I told her about maddie and her continual double dribble she

looked at me like I was lying!

Sherry

[Guest guest]

<<I find ST and OT and each time we move or change school, each approach is SO

dang

different EVEN if we have something specific on an IEP and even though I

advocate very

well or as well as possible for . I just keep trying to get my point

across!!! >>

Boy do I hear you!! We had 4 SLPs in one year (they kept moving back home to be

with their boyfriends or whatever....couldn't take a few minor hurricane scares

LOL) and each time we worked sooooo hard to get things set up just right for

each one and to accomodate her preferences and work them into a good mix with

our preferences and then BOOM- they were gone. We had the OT and the SLP both

agreeing needed oral motor exercizes and each one tried to get the other

one to do it and it ended up with me being the one to do it. There's a really

good book on that talktools website someone posted the other day which can help

you evaluate and work with your own child....or at least know what to ask for.

Unfortunately it's $65 but maybe you could talk the school into investing? then

again maybe not. " Oral Motor Exercizes for Speech Clarity " . On another list I'm

on Sara Rosenfeld allowed the group to circulate her videos and DVDs by

mail so we all got to see them for free and they were really helpful. I wish

more schools would get into the act and purchase the video set. Just dreaming

again :-)

Sherry

[Guest guest]

<<Where do you live? I too have gone through Speech Therapist like you go

through underwear! Very frusturating having to start all over with someone

new and trying to explain to them your situation. I live in Florida.>>

Hi ,

I'm in Florida too....East coast, South, between Coral Springs and Pompano,

North of Ft. lauderdale and Miami, but south of Boca and West palm (Nobody ever

knows where Pompano is:-) How about you? Will we be evacuating at the same times

or not? on this list is in La. so we are always figuring it will be one of

us who gets hit....the Gulf or Florida. And ette Is further north on the

East coast than we are. We're not over Wilma from last year yet. And I have to

keep reminding myself that was late october as we're getting a little cocky this

season :-P One of our SLPs actually came to Florida just to try it out for a

summer job....she told everyone she was staying permanently but I had a

feeling....we are the state of transients right?

Sherry

[Guest guest]

<<I am in Ft. Walton Beach between Panama City and Pensacola (both about an

hour away). We have been so lucky this year as far as hurricanes go! In my

area I feel like there really isnt any luck as far as resources go for

special needs children, especially Speech.>>

oooops, , I thought I was replying to a different group so the folks I

mentioned are not on this list....they ONLY have DS. So it looks like you and I

will be wishing for hurricanes to go in the opposite direction? I know you guys

had it really bad the past couple of years. Wish you were closer!

Sherry

[Guest guest]

Sherry,

Where do you live? I too have gone through Speech Therapist like you go

through underwear! Very frusturating having to start all over with someone

new and trying to explain to them your situation. I live in Florida.

Re: Re: Hi guys.. question about non-verbal children

> <<I find ST and OT and each time we move or change school, each approach

is SO dang

> different EVEN if we have something specific on an IEP and even though I

advocate very

> well or as well as possible for . I just keep trying to get my

point across!!! >>

>

> Boy do I hear you!! We had 4 SLPs in one year (they kept moving back home

to be with their boyfriends or whatever....couldn't take a few minor

hurricane scares LOL) and each time we worked sooooo hard to get things set

up just right for each one and to accomodate her preferences and work them

into a good mix with our preferences and then BOOM- they were gone. We had

the OT and the SLP both agreeing needed oral motor exercizes and each

one tried to get the other one to do it and it ended up with me being the

one to do it. There's a really good book on that talktools website someone

posted the other day which can help you evaluate and work with your own

child....or at least know what to ask for. Unfortunately it's $65 but maybe

you could talk the school into investing? then again maybe not. " Oral Motor

Exercizes for Speech Clarity " . On another list I'm on Sara Rosenfeld

allowed the group to circulate her videos and DVDs by mail so we all got to

see them for free and they were really helpful. I wish more schools would

get into the act and purchase the video set. Just dreaming again :-)

> Sherry

>

>

>

>

[Guest guest]

I am in Ft. Walton Beach between Panama City and Pensacola (both about an

hour away). We have been so lucky this year as far as hurricanes go! In my

area I feel like there really isnt any luck as far as resources go for

special needs children, especially Speech. My daughter does not drink or

eat solids. Her meals mostly consist of pureed foods and the Speech

therapist tend to always focus on the chewing part instead of doing both

(getting her to swallow fluids). Oh so frusturating but Im just hoping in

time she will get it and I tend to not let it bother me, the only time when

there is stress is when someone else brings it up. Having a special needs

child doesnt really stress me out so much, the stress comes from people

outside with their questions. Anyway, nice talking to you.

Re: Re: Hi guys.. question about non-verbal children

> <<Where do you live? I too have gone through Speech Therapist like you go

> through underwear! Very frusturating having to start all over with

someone

> new and trying to explain to them your situation. I live in Florida.>>

>

> Hi ,

> I'm in Florida too....East coast, South, between Coral Springs and

Pompano, North of Ft. lauderdale and Miami, but south of Boca and West palm

(Nobody ever knows where Pompano is:-) How about you? Will we be evacuating

at the same times or not? on this list is in La. so we are always

figuring it will be one of us who gets hit....the Gulf or Florida. And

ette Is further north on the East coast than we are. We're not over

Wilma from last year yet. And I have to keep reminding myself that was late

october as we're getting a little cocky this season :-P One of our SLPs

actually came to Florida just to try it out for a summer job....she told

everyone she was staying permanently but I had a feeling....we are the state

of transients right?

> Sherry

>

>

>

>

[Guest guest]

Thanks Cyndi. My daughter used to eat goldfish but now she wont even eat it

anymore, she just spits them out. Its been like this lately with anything

like a cracker, goldfish, etc. I guess I still have to keep trying. Thanks

again!

Re: Re: Hi guys.. question about non-verbal

> children

> >

> >

> > > <<Where do you live? I too have gone through Speech Therapist

> like you go

> > > through underwear! Very frusturating having to start all over

> with

> > someone

> > > new and trying to explain to them your situation. I live in

> Florida.>>

> > >

> > > Hi ,

> > > I'm in Florida too....East coast, South, between Coral Springs

> and

> > Pompano, North of Ft. lauderdale and Miami, but south of Boca and

> West palm

> > (Nobody ever knows where Pompano is:-) How about you? Will we be

> evacuating

> > at the same times or not? on this list is in La. so we are

> always

> > figuring it will be one of us who gets hit....the Gulf or Florida.

> And

> > ette Is further north on the East coast than we are. We're not

> over

> > Wilma from last year yet. And I have to keep reminding myself that

> was late

> > october as we're getting a little cocky this season :-P One of our

> SLPs

> > actually came to Florida just to try it out for a summer

> job....she told

> > everyone she was staying permanently but I had a feeling....we are

> the state

> > of transients right?

> > > Sherry

> > >

> > >

> > >

> > >

[Guest guest]

Hi All!

My son is 14 and totally nonverbal. We use Basic American Sign Language and

very little PECS. , my son, is on the moderate end of MR.

At age 5, during a weekly speech therapy session, spoke the words

" baby " , " Barney " and " mommie " . He had never spoken a word before and he said

them perfectly. He said each of these words at least 3 times in rapid

succession, one right after the other as the therapist said the words. He was

in

front of a 2-way mirror looking at himself. I cried like a baby. The next day

we went out and purchased mirrors and lined one wall of his toy room with

them. We sat with many times and repeated the words again and again. He

has never said a word since that day at therapy.

I feel that the Autism has robbed him of his ability to speak words. I also

believe it makes him unable to even hum songs he loves. I listen to him

humming along with songs on his DVDs and tapes and he never is able to come

even

close to the tune.

I know this sounds negative, but it is what it is. can not speak, but

he is physically able to speak. Everything worked at that one moment in

time. We have to move forward with whatever there is to promote communication.

Sign language and pecs work well with .

I am always amazed at the workings of his brain. He brings me a spoon, then

a fork, then a spoon again when I sign that I want a knife, yet he knows

things about the DVD player that I don't have a clue about. Go figure!!

Judy