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Remember that YOU are the expert on your child. Anything a therapist gives

you, you should consider as advice/training. It's yours to do with as you

please. If there is a disagreement, then you should win. If they can't

deal with that, then I'd start looking for another therapist.

As to ASL and its not being grammatically correct - well, that's not true.

It does have different grammar than English. Her statement is like saying

that Italian is not grammatically correct because it has different rules

than English. Her point, I believe, is that teaching him 2 different

grammars would be confusing. Considering the number of bilingual kids in

the world, I would tend to disagree. I would also say that it's likely he

will learn " pigeon " before he learns ASL. " pigeon " is using ASL signs, but

using English type grammar. I'm a beginner at signing and use pigeon. I

don't think about ASL grammar (I don't know it), I just sign the vocabulary

I know and my point usually gets across. Does that make me fluent in ASL?

no. Am I able to better communicate with someone who knows ASL?

Definitely.

I think you should work to give your child any and all communication tools

you can, and then see what works best for now, and then try to work on the

other ones as you can. Many audio verbal proponents will tell you that

signing will hamper your child's learning (they see the signs as a crutch),

but I don't believe there is any hard evidence to show this. On the

contrary, I think there is evidence to show that signing can help normal

infants learn communication skills at a younger age then they are able to

with verbal communication, and that this does not negatively effect their

verbal development later (My older, non-charge child is an example of this.

She learned many signs before she could speak, and then when she learned to

speak, just sort of stopped using them. Now she is using them again, as we

all are, with our youngest) With all the information out there telling us

that children begin their prime language learning at around 18 months, why

would restrict their language options?

When you consider that one of the major components of developmental

retardation is communication, doesn't it make sense that we do everything we

can to give our children the ability to communicate at the youngest age

possible? That's our thinking at least. It has made us a few enemies of

some therapists who only see things in their realm of specialty. They don't

know the whole child like we the parents, and they don't tend to look at the

big picture.

Wow.. I kind of went off on a rant there for a moment. Can you tell we've

been through this a few times? :)

Hope this helps,

Christian Lobaugh

Husband to Ingrid, Father to (4) and (14 month CHARGE)

Tulsa, OK

speech again

hi all, once again, I need your opinions and feedback to some questions

concerning speech.

first, could you let me know if your child is verbal if he/she stutters.

the speech therapist is wondering if it's a charge thing or a timmy thing.

second, how many verbal children use sign language? and what type? she was

saying since he is verbal and they are teaching him grammar, reading etc.

asl is not grammatically correct. Any thoughts?

the reason we are wanting him to learn to sign is we don't know what is

going to happen with his hearing and rather than lose it and then say now

what? we sould rather he and we knew it ahead of time, and if he doesn't

lose it he has another form of communication anyway.

another thing she keeps pushing is adaptive technology in case he loses

hearing so he can communicate with others who can hear and don't know sign?

meaning that way he could stay in the regular classroom, and still

communicate --but I disagree with this--he can talk he just can't or

wouldn't be able to hear.

My biggest pieve is that she doesn't know sign and doesn't want him to learn

it because of BALANCE issues and not being able to control his body...

HELLO!!! that's Timmy, if he gets excited his body goes, whether he's

signing, gesturing or talking.

anyway, I have to run, eye appt. for tim--please give me any feedback you

can think of.. thanks.

maria

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:

Let me preface my comments by stating that is totally non-verbal.

While it is true that ASL is not grammatically correct for English, it IS a

language with recognized linguistic characteristics - syntax, idioms,

grammar, classifiers... That is why it can be offered as a " foreign

language " requirement at University (and some high school) levels of

education.

To state it is not a real language is to say something along the lines that

the African language using " pops " and " clicks " is not a language, yet it is

recognized as a distinct language for that ethnic group. So too, ASL is a

distinct language used by a wide-ranging group of peoples. ASL is the third

most common language used in the United States. (In fact, some studies

suggest it is actually the second most used language!)

There are also many studies concluding that ASL use can actually enhance the

acquisition of English in numerous populations of Hearing children,

especially those with developmental delays. ASL has also been endorsed for

use with infants, prior to becoming verbal so they can communicate their

needs much earlier than the acquisition of verbal language beyond the " baby

babble " that only the child's parents understand. Locally, one school

district has used ASL in Kindergarten through 3rd grades to enhance learning

of vocabulary and spelling. Children have a such high level of visual

learning at those ages that the visual cues of signing only help to

re-inforce the words and their use. this program has been in place for over

8 years and it has continued, evidence that the program is successful or it

would have been discontinued.

ASL does not preclude proficiency in English. The Supervising teacher

(I.E.: Principal) for the Elementary Dept. at ISD has a Masters in

Linguistics. He is also Deaf and has been since birth. Since our family is

not native to ASL use (except for ), we have had to learn it. I have

noticed a huge difference in English writing and reading skills in children

who have families that are native ASL users. (I.E.: Parents or other family

members are Deaf and have used it as their first language, so the child has

had an advantage of a native signer from day one.) Those children have

tremendous English skills! I only hope skills develop along those

lines as she continues her education. Right now she is doing fairly well.

How much lag in her English is due to language/communication acquisition

issues, and how much to developmental issues is up for discussion.

The adaptive technology: Is that a voice synthesizer? How will that help

him with hearing others? Most Deaf I have met that have or had residual

hearing and can be verbal will sign with other Deaf, but can adapt and

verbally address someone who cannot sign. The problem is not their

verbalization, but the reception of what is said by the other person.

Unless the technology can text print (say, on a screen on a portable unit)

what the person is saying TO Timmy, I don't see the benefit. Also, is it

something he can keep with him constantly? And if the therapist thinks

he'll have trouble signing because of motor control or balance issues, what

would happen to any piece of equipment he might have with him: Is he

supposed to hold this equipment and type on it while off-balance?

On the " lighter side " : Kenny is a typical Hearing child with no hearing

impairment. He still has times, even when not around or anyone

Deaf, he'd prefer to sign with us - especially if we're in a large group

situation, he's across the room, and is headed to the restroom. Saves him

walking across the room to talk to us! Typical lazy 13-year old!

Like I stated at the beginning, is not verbal at all for language

and will never be. We were told by an Audiologist, of all people, to seek

out sign language classes since would probably not be able to

discern vocal range tones. She stated that spoken English will be nearly

impossible for given her Db levels of hearing loss and the range of

tones was not able to hear. That is quite an admission from an

Audiologist, especially after fitting for hearing aids.

Man, have I ever gone on! Getting off my soapbox before I fall off in my

zeal!

Good luck with the language/communication issues. I think you are on the

right track in disagreeing with the therapist. After all, as was pointed

out to me: If Timmy is verbal and doesn't need it for daily communication,

he can still put on a job resume' that he is bi-lingual! Seems like a

pretty good plus to me!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (13) and (10, CHARGE+)

Wife of Rick

speech again

hi all, once again, I need your opinions and feedback to some questions

concerning speech.

first, could you let me know if your child is verbal if he/she stutters.

the speech therapist is wondering if it's a charge thing or a timmy thing.

second, how many verbal children use sign language? and what type? she was

saying since he is verbal and they are teaching him grammar, reading etc.

asl is not grammatically correct. Any thoughts?

the reason we are wanting him to learn to sign is we don't know what is

going to happen with his hearing and rather than lose it and then say now

what? we sould rather he and we knew it ahead of time, and if he doesn't

lose it he has another form of communication anyway.

another thing she keeps pushing is adaptive technology in case he loses

hearing so he can communicate with others who can hear and don't know sign?

meaning that way he could stay in the regular classroom, and still

communicate --but I disagree with this--he can talk he just can't or

wouldn't be able to hear.

My biggest pieve is that she doesn't know sign and doesn't want him to learn

it because of BALANCE issues and not being able to control his body...

HELLO!!! that's Timmy, if he gets excited his body goes, whether he's

signing, gesturing or talking.

anyway, I have to run, eye appt. for tim--please give me any feedback you

can think of.. thanks.

maria

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Hi, --

Your issues with Timmy sound similar to ours with Aubrie. She is becoming more

and more verbal, but her intelligibility is still a concern.

Aubrie does not stutter. My initial thought is that that would be a Timmy thing

rather than a Charge thing.

We began sign as an infant. I learned ASL at our state school for the deaf, but

I used pigeon with Aubrie. I would sign and speak simultaneously. We knew she

could hear and wanted her to talk so it made sense to give her both the sign and

speech so she could then give back using whatever method worked for her at the

time. She still uses sign to clarify things that I don't understand. She tells

me that she wants to watch her sign videos to learn more sign language. She

doesn't realize that she is losing her signing skills, and she is extremely

interested in continuing her learning. I should be jumping on her bandwagon and

taking the opportunity to teach her tons of sign. Unfortunately, I don't

remember much either and she doesn't need it for understanding so it's hard to

find motivation to use it daily.

The professionals at our school have been resistant to sign -- they say because

she lacks the motor skills to sign precisely. However, she lacks the motor

skills to speak precisely and we still pursue that. I think it's more that sign

is difficult for them to teach since they are not knowledgeable in it. Things

have been working out ok thus far. However, we are discussing options for

kindergarten communication. I think sign is the best way for her to clarify

herself whether she's trying to say a word or a letter sound in phonics

instruction or a number in math. Of course, this would mean the teacher would

have to learn sign too. The school thinks of options that are easier for them

-- like an alphabet on her desk that she can point to or some kind of computer

for typing answers. I'm not sure what will be best since it's hard to be sure

what the issues will actually be in the classroom.

I agree with Christian and Marilyn had to say. Our philosophy has been very

similar. I would have loved to see Aubrie develop bilingually for many reasons

-- one being the ability to communicate with her Charge family at the

conferences. I think it would have enhanced her learning and her communication.

However, it just isn't very feasible in our community. I could have sent her to

the school for the deaf. It's close enough to go by bus (1 hour each way) but

all we'd gain would be communication. We'd lose so much more. It's really not

the best setting for her because her hearing and speech are so good compared to

most of the other students there. At one time, I had considered sending her

there 1 day/week for the experience and sense of belonging with that community.

However, she'd still be an outsider there. And she'd be even more of an

outsider with her local classmates. There's just not a win-win situation that I

could come up with.

Ok, so you've got me rethinking this issue that I thought I was done with :-) I

could go on and on but I'm afraid I'd keep going in circles! I support your

thinking with Timmy and encourage you to continue fighting for what you think he

needs. I think the school is not seeing the whole picture on this one. It's

very difficult for folks who can hear and communicate to imagine what life is or

will be like for our kids.

Good luck-

Michele W

Aubrie's mom

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Christian,

I ABSOLUTELY 100% agree with every single word of your post. Signing with

Kennedy has been HUGE benefit for both she and us.

Great post!

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

speech again

hi all, once again, I need your opinions and feedback to some questions

concerning speech.

first, could you let me know if your child is verbal if he/she stutters.

the speech therapist is wondering if it's a charge thing or a timmy thing.

second, how many verbal children use sign language? and what type? she was

saying since he is verbal and they are teaching him grammar, reading etc.

asl is not grammatically correct. Any thoughts?

the reason we are wanting him to learn to sign is we don't know what is

going to happen with his hearing and rather than lose it and then say now

what? we sould rather he and we knew it ahead of time, and if he doesn't

lose it he has another form of communication anyway.

another thing she keeps pushing is adaptive technology in case he loses

hearing so he can communicate with others who can hear and don't know sign?

meaning that way he could stay in the regular classroom, and still

communicate --but I disagree with this--he can talk he just can't or

wouldn't be able to hear.

My biggest pieve is that she doesn't know sign and doesn't want him to learn

it because of BALANCE issues and not being able to control his body...

HELLO!!! that's Timmy, if he gets excited his body goes, whether he's

signing, gesturing or talking.

anyway, I have to run, eye appt. for tim--please give me any feedback you

can think of.. thanks.

maria

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,

Kennedy is verbal and uses sign (more receptive at this point, but expressive is

coming along as well)

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

speech again

hi all, once again, I need your opinions and feedback to some questions

concerning speech.

first, could you let me know if your child is verbal if he/she stutters. the

speech therapist is wondering if it's a charge thing or a timmy thing.

second, how many verbal children use sign language? and what type? she was

saying since he is verbal and they are teaching him grammar, reading etc. asl is

not grammatically correct. Any thoughts?

the reason we are wanting him to learn to sign is we don't know what is going

to happen with his hearing and rather than lose it and then say now what? we

sould rather he and we knew it ahead of time, and if he doesn't lose it he has

another form of communication anyway.

another thing she keeps pushing is adaptive technology in case he loses

hearing so he can communicate with others who can hear and don't know sign?

meaning that way he could stay in the regular classroom, and still communicate

--but I disagree with this--he can talk he just can't or wouldn't be able to

hear.

My biggest pieve is that she doesn't know sign and doesn't want him to learn

it because of BALANCE issues and not being able to control his body... HELLO!!!

that's Timmy, if he gets excited his body goes, whether he's signing, gesturing

or talking.

anyway, I have to run, eye appt. for tim--please give me any feedback you can

think of.. thanks.

maria

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We're continuing with ASL lessons in school, because there can be a sudden

decrease in hearing at any time. 's verbalization is excellent because

what liitle hearing he has covers the average speech range. ASL is just

another form of communication-a second language. So I say, " Go for it " .

Barbara-mom(CHARGE)9,Rosie13

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,

I have read your posts lately and it really frustrates me that your speech

therapist seems unwilling to sign with Timmy! Just my 2 cents, but it

sounds to me like your therapist doesn't want to learn sign! There is a lot

of documentation on how sign enhances language whether the child can hear or

not. I know for sure that it helps my students and they all can hear! We

use Signed English with because it is grammatically correct and wold

be easier to transition to schoolwork. And she does have a severe/profound

loss in her left ear and moderate/severe loss in her right. We just had her

conference at school. She is doing very, very well in reading and writing.

(I was so proud of her! Even the art teacher gushed about the progress that

has made this year, and the Music teacher says that sings

louder than the other kids most of the time!) I attribute that to early

intervention with an itinerant teacher of the hearing impaired that signed

with her from the age of 6 months. is verbal, but we use sign with

her as well as speech. Sometimes she signs and sometimes she is totally

oral. Depends on who she is talking to and she knows if they can sign or

not. If they can't, she talks. If they don't understand she will sign or

gesture for them. Eventually, the message gets through. We are also

beginning keyboarding with , who is in 7 and in first grade, so that

she will be able to take notes and watch an interpreter as she gets older.

Nothing fancy needed, just a computer and a typing program...

Sorry to get on a soapbox, but balance has nothing to so with signing!

Adaptive technology is great, but I think signing would be the first

adaptation that I would make!

Show your therapist the book, Dancing With Words by Marilyn s...

G. proud mom to

speech again

> hi all, once again, I need your opinions and feedback to some questions

concerning speech.

>

> first, could you let me know if your child is verbal if he/she stutters.

the speech therapist is wondering if it's a charge thing or a timmy thing.

>

> second, how many verbal children use sign language? and what type? she

was saying since he is verbal and they are teaching him grammar, reading

etc. asl is not grammatically correct. Any thoughts?

>

> the reason we are wanting him to learn to sign is we don't know what is

going to happen with his hearing and rather than lose it and then say now

what? we sould rather he and we knew it ahead of time, and if he doesn't

lose it he has another form of communication anyway.

>

> another thing she keeps pushing is adaptive technology in case he loses

hearing so he can communicate with others who can hear and don't know sign?

meaning that way he could stay in the regular classroom, and still

communicate --but I disagree with this--he can talk he just can't or

wouldn't be able to hear.

>

> My biggest pieve is that she doesn't know sign and doesn't want him to

learn it because of BALANCE issues and not being able to control his

body... HELLO!!! that's Timmy, if he gets excited his body goes, whether

he's signing, gesturing or talking.

>

> anyway, I have to run, eye appt. for tim--please give me any feedback you

can think of.. thanks.

>

> maria

>

>

>

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Very well said. Kim

> Remember that YOU are the expert on your child. Anything a therapist gives

> you, you should consider as advice/training. It's yours to do with as you

> please. If there is a disagreement, then you should win. If they can't

> deal with that, then I'd start looking for another therapist.

>

> As to ASL and its not being grammatically correct - well, that's not true.

> It does have different grammar than English. Her statement is like saying

> that Italian is not grammatically correct because it has different rules

> than English. Her point, I believe, is that teaching him 2 different

> grammars would be confusing. Considering the number of bilingual kids in

> the world, I would tend to disagree. I would also say that it's likely he

> will learn " pigeon " before he learns ASL. " pigeon " is using ASL signs, but

> using English type grammar. I'm a beginner at signing and use pigeon. I

> don't think about ASL grammar (I don't know it), I just sign the vocabulary

> I know and my point usually gets across. Does that make me fluent in ASL?

> no. Am I able to better communicate with someone who knows ASL?

> Definitely.

>

> I think you should work to give your child any and all communication tools

> you can, and then see what works best for now, and then try to work on the

> other ones as you can. Many audio verbal proponents will tell you that

> signing will hamper your child's learning (they see the signs as a crutch),

> but I don't believe there is any hard evidence to show this. On the

> contrary, I think there is evidence to show that signing can help normal

> infants learn communication skills at a younger age then they are able to

> with verbal communication, and that this does not negatively effect their

> verbal development later (My older, non-charge child is an example of this.

> She learned many signs before she could speak, and then when she learned to

> speak, just sort of stopped using them. Now she is using them again, as we

> all are, with our youngest) With all the information out there telling us

> that children begin their prime language learning at around 18 months, why

> would restrict their language options?

>

> When you consider that one of the major components of developmental

> retardation is communication, doesn't it make sense that we do everything we

> can to give our children the ability to communicate at the youngest age

> possible? That's our thinking at least. It has made us a few enemies of

> some therapists who only see things in their realm of specialty. They don't

> know the whole child like we the parents, and they don't tend to look at the

> big picture.

>

> Wow.. I kind of went off on a rant there for a moment. Can you tell we've

> been through this a few times? :)

>

> Hope this helps,

> Christian Lobaugh

> Husband to Ingrid, Father to (4) and (14 month CHARGE)

> Tulsa, OK

>

> speech again

>

>

> hi all, once again, I need your opinions and feedback to some questions

> concerning speech.

>

> first, could you let me know if your child is verbal if he/she stutters.

> the speech therapist is wondering if it's a charge thing or a timmy thing.

>

> second, how many verbal children use sign language? and what type? she was

> saying since he is verbal and they are teaching him grammar, reading etc.

> asl is not grammatically correct. Any thoughts?

>

> the reason we are wanting him to learn to sign is we don't know what is

> going to happen with his hearing and rather than lose it and then say now

> what? we sould rather he and we knew it ahead of time, and if he doesn't

> lose it he has another form of communication anyway.

>

> another thing she keeps pushing is adaptive technology in case he loses

> hearing so he can communicate with others who can hear and don't know sign?

> meaning that way he could stay in the regular classroom, and still

> communicate --but I disagree with this--he can talk he just can't or

> wouldn't be able to hear.

>

> My biggest pieve is that she doesn't know sign and doesn't want him to learn

> it because of BALANCE issues and not being able to control his body...

> HELLO!!! that's Timmy, if he gets excited his body goes, whether he's

> signing, gesturing or talking.

>

> anyway, I have to run, eye appt. for tim--please give me any feedback you

> can think of.. thanks.

>

> maria

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

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