Re: [SPAM] encouragment, please-Tomatis

[Guest guest]

In line with what Patti is saying, has anyone tried Tomatis therapy, a true

program that is done at location with combination OT therapy? We are looking

into such a program for my no-longer verbal son. Love to hear what others

think.

CBS 5 Investigates: Woman Promises Autism

> > Cure?

> > Date: Tue, 26 Feb 2008 08:30:42 -0500

> > From: AutismLink <listserv@autismlink

> <mailto:listserv%40autismlink.com>

> .com>

> > sjsmithcablespeed (DOT)

> <mailto:sjsmith%40cablespeed.com> com

> >

> > **CBS 5 Investigates: Woman Promises Autism

> > Cure?**

> >

> > Source: KPIX TV, San Francisco

> >

> >

> http://cbs5.

>

<http://cbs5.com/investigates/MAPS.autism.cure.2.662695.html>

> com/investigates/MAPS.autism.cure.2.662695.html

> > (CBS 5) There are thousands of children in the Bay

> > Area diagnosed

> > with autism, and parents are desperate for help.

> > Families are looking

> > at all kinds of treatments. But a CBS 5

> > investigation uncovers an

> > autism treatment being promised as a cure.

> >

> > It's being pitched at seminars across the country,

> > several of which

> > CBS 5 Investigates attended with an undercover

> > camera. At a seminar

> > in Orange County, we heart that promise.

> >

> > " We are taking about fixing the brain, fixing the

> > brain forever, " the

> > program's inventor, Claudie Gordon-Pomares told

> > parents. She said she

> > can repair the brain through sensory stimulation

> > called " Monitored

> > Multi-cortical Activities for Additional Pathways

> > and Synapses, " or

> > MAPS.

> >

>

=== message truncated ===

__________________________________________________________

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[Guest guest]

Hi -

I hear you and completely understand what you are saying. I often

wonder if we are doing the right thing for Bobby as well. Although we

have only been working with Dr. G since November, we have seen some

nice changes- he is no longer congested, and he responds to his name,

AND although some wouldn't appreciate this, he is clearly frustrated

with his lack of communication skills and acts out (our last SLP

assessment has him in the .03 percentile for communication) which

tells me that he is now aware of his surroundings.

However, Bobby has been receiving services, P/T, O/T, SpEd, and Speech

since he was one, and the progress overall has been soooooooooooo

slow! I often wonder if we are tormenting him with services and meds

and if they will ever take effect. Bobby will be 4 in a few weeks and

his language/communication skills are limited to, with signs, 'more'

and 'give me'. He is hypotonic with severe oral motor issues which

makes eating a challenge and teaching him signs are as easily taught

as teaching him how to use words. I too, wonder how much of what he

learns doesn't just come with growing up. I am equally as frustrated,

believe me!

But, I do think that we need to offer our children everything we can

and that in time with the constant support, they will 'catch up' and

be more like their peers, easier said than understood. I guess, we

just need to 'keep at it' and hope that the language will come along

with a fun childhood full of positive memories.

Jenn

> >

> > > Doris,

> > >

> > > Every time I take my son to the local pediatrician

> > > she asks when Dr. Goldberg will be publishing

> > > studies/have peer reviewed studies/ etc. She sees

> > > the improvements in my oldest and knows a cure

> > will

> > > be found one day. I think she wants to believe

> >

> > > but wants to see the proof in writing in a medical

> > > journal or something.

> > >

> > > - in Mobile, AL

> > >

> > >

> > >

> > > __________________________

> > > Reality lies beyond the horizon...

> > > Wonderwegian

> > >

> > > CBS 5 Investigates: Woman Promises Autism

> > > Cure?

> > > Date: Tue, 26 Feb 2008 08:30:42 -0500

> > > From: AutismLink <listserv@autismlink

> > <mailto:listserv%40autismlink.com>

> > .com>

> > > sjsmithcablespeed (DOT)

> > <mailto:sjsmith%40cablespeed.com> com

> > >

> > > **CBS 5 Investigates: Woman Promises Autism

> > > Cure?**

> > >

> > > Source: KPIX TV, San Francisco

> > >

> > >

> > http://cbs5.

> >

> <http://cbs5.com/investigates/MAPS.autism.cure.2.662695.html>

> > com/investigates/MAPS.autism.cure.2.662695.html

> > > (CBS 5) There are thousands of children in the Bay

> > > Area diagnosed

> > > with autism, and parents are desperate for help.

> > > Families are looking

> > > at all kinds of treatments. But a CBS 5

> > > investigation uncovers an

> > > autism treatment being promised as a cure.

> > >

> > > It's being pitched at seminars across the country,

> > > several of which

> > > CBS 5 Investigates attended with an undercover

> > > camera. At a seminar

> > > in Orange County, we heart that promise.

> > >

> > > " We are taking about fixing the brain, fixing the

> > > brain forever, " the

> > > program's inventor, Claudie Gordon-Pomares told

> > > parents. She said she

> > > can repair the brain through sensory stimulation

> > > called " Monitored

> > > Multi-cortical Activities for Additional Pathways

> > > and Synapses, " or

> > > MAPS.

> > >

> >

> === message truncated ===

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

>

>

>

>

>

[Guest guest]

I think it is very important to provide whatever services you can and keep them

up. We have been very fortunate that my 4.5 y.o. son is making great progress.

But it took 2.5 years of intensive speech therapy before he started to have a

good functional grasp of language (it was more than a year before he finally

" got " nouns and realized that things had names) and it took over a year of

taking him to the toilet every hour on the hour before he finally " got " it and

started potty learning. Almost another year after that, we are about 90% of the

way day-time potty learned.

Progress can be painfully slow. But for me, the one thing that sustains me is

hope. I can't give up services for my son because that would be giving up hope

and I just couldn't do it. We are fortunate that we are at a point where we are

starting to see really good gains but it was a really long road to get here and

there have been some really hard moments along the way. And I have to say, hope

can be really, really expensive. But what do you do? I know for us, I want to

give my son the best chance at the best life he can have. So we hope, we pray,

we try new things and we are constantly moving forward and trying not to dwell

on the past or get bogged down in the present. There aren't really any great

answers. You just do the best you can and hope for the best.

{{Hugs}}

Tera

jennkleiber <jennkleiber@...> wrote:

Hi -

I hear you and completely understand what you are saying. I often

wonder if we are doing the right thing for Bobby as well. Although we

have only been working with Dr. G since November, we have seen some

nice changes- he is no longer congested, and he responds to his name,

AND although some wouldn't appreciate this, he is clearly frustrated

with his lack of communication skills and acts out (our last SLP

assessment has him in the .03 percentile for communication) which

tells me that he is now aware of his surroundings.

However, Bobby has been receiving services, P/T, O/T, SpEd, and Speech

since he was one, and the progress overall has been soooooooooooo

slow! I often wonder if we are tormenting him with services and meds

and if they will ever take effect. Bobby will be 4 in a few weeks and

his language/communication skills are limited to, with signs, 'more'

and 'give me'. He is hypotonic with severe oral motor issues which

makes eating a challenge and teaching him signs are as easily taught

as teaching him how to use words. I too, wonder how much of what he

learns doesn't just come with growing up. I am equally as frustrated,

believe me!

But, I do think that we need to offer our children everything we can

and that in time with the constant support, they will 'catch up' and

be more like their peers, easier said than understood. I guess, we

just need to 'keep at it' and hope that the language will come along

with a fun childhood full of positive memories.

Jenn

> >

> > > Doris,

> > >

> > > Every time I take my son to the local pediatrician

> > > she asks when Dr. Goldberg will be publishing

> > > studies/have peer reviewed studies/ etc. She sees

> > > the improvements in my oldest and knows a cure

> > will

> > > be found one day. I think she wants to believe

> >

> > > but wants to see the proof in writing in a medical

> > > journal or something.

> > >

> > > - in Mobile, AL

> > >

> > >

> > >

> > > __________________________

> > > Reality lies beyond the horizon...

> > > Wonderwegian

> > >

> > > CBS 5 Investigates: Woman Promises Autism

> > > Cure?

> > > Date: Tue, 26 Feb 2008 08:30:42 -0500

> > > From: AutismLink <listserv@autismlink

> > <mailto:listserv%40autismlink.com>

> > .com>

> > > sjsmithcablespeed (DOT)

> > <mailto:sjsmith%40cablespeed.com> com

> > >

> > > **CBS 5 Investigates: Woman Promises Autism

> > > Cure?**

> > >

> > > Source: KPIX TV, San Francisco

> > >

> > >

> > http://cbs5.

> >

> <http://cbs5.com/investigates/MAPS.autism.cure.2.662695.html>

> > com/investigates/MAPS.autism.cure.2.662695.html

> > > (CBS 5) There are thousands of children in the Bay

> > > Area diagnosed

> > > with autism, and parents are desperate for help.

> > > Families are looking

> > > at all kinds of treatments. But a CBS 5

> > > investigation uncovers an

> > > autism treatment being promised as a cure.

> > >

> > > It's being pitched at seminars across the country,

> > > several of which

> > > CBS 5 Investigates attended with an undercover

> > > camera. At a seminar

> > > in Orange County, we heart that promise.

> > >

> > > " We are taking about fixing the brain, fixing the

> > > brain forever, " the

> > > program's inventor, Claudie Gordon-Pomares told

> > > parents. She said she

> > > can repair the brain through sensory stimulation

> > > called " Monitored

> > > Multi-cortical Activities for Additional Pathways

> > > and Synapses, " or

> > > MAPS.

> > >

> >

> === message truncated ===

>

> __________________________________________________________

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> Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

>

>

>

>

>

[Guest guest]

Thanks for all of the encouragement. There is NO way

I'd ever give up on my son... I guess I " m just in a

valley & had my " moment " and can move on. We are

looking into OT/Sensory integration. There aren't any

good OT's close, but if it will help him I will

drive!! Yes, hope is all we have! I can't express

the number of prayers that we have prayed for him and

will continue to do so. I wish the very very best to

all of you & your children too. This is such an

interesting/bizarre journey we are on!

--- tera <tera999@...> wrote:

> I think it is very important to provide whatever

> services you can and keep them up. We have been

> very fortunate that my 4.5 y.o. son is making great

> progress. But it took 2.5 years of intensive speech

> therapy before he started to have a good functional

> grasp of language (it was more than a year before he

> finally " got " nouns and realized that things had

> names) and it took over a year of taking him to the

> toilet every hour on the hour before he finally

> " got " it and started potty learning. Almost another

> year after that, we are about 90% of the way

> day-time potty learned.

>

> Progress can be painfully slow. But for me, the

> one thing that sustains me is hope. I can't give up

> services for my son because that would be giving up

> hope and I just couldn't do it. We are fortunate

> that we are at a point where we are starting to see

> really good gains but it was a really long road to

> get here and there have been some really hard

> moments along the way. And I have to say, hope can

> be really, really expensive. But what do you do? I

> know for us, I want to give my son the best chance

> at the best life he can have. So we hope, we pray,

> we try new things and we are constantly moving

> forward and trying not to dwell on the past or get

> bogged down in the present. There aren't really any

> great answers. You just do the best you can and hope

> for the best.

>

> {{Hugs}}

> Tera

>

> jennkleiber <jennkleiber@...> wrote:

> Hi -

> I hear you and completely understand what you are

> saying. I often

> wonder if we are doing the right thing for Bobby as

> well. Although we

> have only been working with Dr. G since November, we

> have seen some

> nice changes- he is no longer congested, and he

> responds to his name,

> AND although some wouldn't appreciate this, he is

> clearly frustrated

> with his lack of communication skills and acts out

> (our last SLP

> assessment has him in the .03 percentile for

> communication) which

> tells me that he is now aware of his surroundings.

>

> However, Bobby has been receiving services, P/T,

> O/T, SpEd, and Speech

> since he was one, and the progress overall has been

> soooooooooooo

> slow! I often wonder if we are tormenting him with

> services and meds

> and if they will ever take effect. Bobby will be 4

> in a few weeks and

> his language/communication skills are limited to,

> with signs, 'more'

> and 'give me'. He is hypotonic with severe oral

> motor issues which

> makes eating a challenge and teaching him signs are

> as easily taught

> as teaching him how to use words. I too, wonder how

> much of what he

> learns doesn't just come with growing up. I am

> equally as frustrated,

> believe me!

>

> But, I do think that we need to offer our children

> everything we can

> and that in time with the constant support, they

> will 'catch up' and

> be more like their peers, easier said than

> understood. I guess, we

> just need to 'keep at it' and hope that the language

> will come along

> with a fun childhood full of positive memories.

>

> Jenn

>

>

> >

> > > Hi, -

> > >

> > >

> > >

> > > I have two 12-year-old boys who have been with

> Dr G

> > > for 3-1/2 years now.

> > > One of them was very tactile defensive and

> didn't

> > > speak until almost 7 years

> > > old -- but was echolalic in response to some

> videos.

> > > Within a few months of

> > > beginning to see Dr G, this son would tolerate

> Dr G

> > > examining him. This was

> > > HUGE for us, but his language comprehension and

> > > speech stayed the same -

> > > using one to three words. As time went on, I

> also

> > > was wondering if the

> > > improvements that I was seeing were due to his

> > > growing up. Then, when

> > > trying to describe his 'swiss cheese foundation'

> > > development to his OT, she

> > > showed me a developmental pyramid which shows

> the

> > > body/brain development

> > > dependencies. Speech/Language is in the second

> or

> > > third level of

> > > development. What I found is that my son's brain

> > > may be healthier, but that

> > > his basic " system " development was, and is,

> still

> > > very immature. This makes

> > > appropriate OT therapy VERY important. As his

> > > tactile tolerance and

> > > proprioceptive system improves, so does his

> desire

> > > for more socialization

> > > and communication (tactile and verbal), and thus

> his

> > > perception of this

> > > world and his language. These are steps that

> most

> > > kids go through during

> > > the first couple of years of life. My son

> didn't.

> > > He was too busy trying

> > > to protect himself from the world.

> > >

> > >

> > >

> > > In a nutshell, after listening to. and following

> the

> > > directions of, some

> > > very prominent doctors/therapists in the field

> of

> > > autism for many years, my

> > > sons have made more improvements since being

> treated

> > > by Dr G. I may not see

> > > any changes for 3-4 months, but then they do/say

> > > something and I'll realize

> > > that, especially my one son, couldn't " do that "

> six

> > > months previously. It's

> > > extremely important to go back and 'identify and

> > > fix' areas of development

> > > that your child may not have mastered. These

> areas

> > > are not always very

> > > obvious, but therapists, OT and SPL, should be

> able

> > > to help ID them - have

> > > them test back to infancy stages of development,

> if

>

=== message truncated ===

________________________________________________________________________________\

____

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[Guest guest]

,

We are looking into OT also. He's going to be evaluated next month while he's

on track break. It is a hard road. I'm sure everyone has their moments where

they feel they are at the end of their rope. I know I do.

One other thing I'm looking at currently is auditory processing issues. My son

sounds very similar to a deaf child when he talks. I'm wondering if it is

because even though his hearing is perfect if what or how he's hearing isn't

clear in some way.

It is really frustrating because my insurance pays for nothing, government

services are few, far between and usually unavailable. There is a lot of worry

and uncertainty in raising a child with autism. So many questions and very few

actual answers.

:-)Tera

Curtis and Hackler <thehacks@...> wrote:

Thanks for all of the encouragement. There is NO way

I'd ever give up on my son... I guess I " m just in a

valley & had my " moment " and can move on. We are

looking into OT/Sensory integration. There aren't any

good OT's close, but if it will help him I will

drive!! Yes, hope is all we have! I can't express

the number of prayers that we have prayed for him and

will continue to do so. I wish the very very best to

all of you & your children too. This is such an

interesting/bizarre journey we are on!

--- tera <tera999@...> wrote:

> I think it is very important to provide whatever

> services you can and keep them up. We have been

> very fortunate that my 4.5 y.o. son is making great

> progress. But it took 2.5 years of intensive speech

> therapy before he started to have a good functional

> grasp of language (it was more than a year before he

> finally " got " nouns and realized that things had

> names) and it took over a year of taking him to the

> toilet every hour on the hour before he finally

> " got " it and started potty learning. Almost another

> year after that, we are about 90% of the way

> day-time potty learned.

>

> Progress can be painfully slow. But for me, the

> one thing that sustains me is hope. I can't give up

> services for my son because that would be giving up

> hope and I just couldn't do it. We are fortunate

> that we are at a point where we are starting to see

> really good gains but it was a really long road to

> get here and there have been some really hard

> moments along the way. And I have to say, hope can

> be really, really expensive. But what do you do? I

> know for us, I want to give my son the best chance

> at the best life he can have. So we hope, we pray,

> we try new things and we are constantly moving

> forward and trying not to dwell on the past or get

> bogged down in the present. There aren't really any

> great answers. You just do the best you can and hope

> for the best.

>

> {{Hugs}}

> Tera

>

> jennkleiber <jennkleiber@...> wrote:

> Hi -

> I hear you and completely understand what you are

> saying. I often

> wonder if we are doing the right thing for Bobby as

> well. Although we

> have only been working with Dr. G since November, we

> have seen some

> nice changes- he is no longer congested, and he

> responds to his name,

> AND although some wouldn't appreciate this, he is

> clearly frustrated

> with his lack of communication skills and acts out

> (our last SLP

> assessment has him in the .03 percentile for

> communication) which

> tells me that he is now aware of his surroundings.

>

> However, Bobby has been receiving services, P/T,

> O/T, SpEd, and Speech

> since he was one, and the progress overall has been

> soooooooooooo

> slow! I often wonder if we are tormenting him with

> services and meds

> and if they will ever take effect. Bobby will be 4

> in a few weeks and

> his language/communication skills are limited to,

> with signs, 'more'

> and 'give me'. He is hypotonic with severe oral

> motor issues which

> makes eating a challenge and teaching him signs are

> as easily taught

> as teaching him how to use words. I too, wonder how

> much of what he

> learns doesn't just come with growing up. I am

> equally as frustrated,

> believe me!

>

> But, I do think that we need to offer our children

> everything we can

> and that in time with the constant support, they

> will 'catch up' and

> be more like their peers, easier said than

> understood. I guess, we

> just need to 'keep at it' and hope that the language

> will come along

> with a fun childhood full of positive memories.

>

> Jenn

>

>

> >

> > > Hi, -

> > >

> > >

> > >

> > > I have two 12-year-old boys who have been with

> Dr G

> > > for 3-1/2 years now.

> > > One of them was very tactile defensive and

> didn't

> > > speak until almost 7 years

> > > old -- but was echolalic in response to some

> videos.

> > > Within a few months of

> > > beginning to see Dr G, this son would tolerate

> Dr G

> > > examining him. This was

> > > HUGE for us, but his language comprehension and

> > > speech stayed the same -

> > > using one to three words. As time went on, I

> also

> > > was wondering if the

> > > improvements that I was seeing were due to his

> > > growing up. Then, when

> > > trying to describe his 'swiss cheese foundation'

> > > development to his OT, she

> > > showed me a developmental pyramid which shows

> the

> > > body/brain development

> > > dependencies. Speech/Language is in the second

> or

> > > third level of

> > > development. What I found is that my son's brain

> > > may be healthier, but that

> > > his basic " system " development was, and is,

> still

> > > very immature. This makes

> > > appropriate OT therapy VERY important. As his

> > > tactile tolerance and

> > > proprioceptive system improves, so does his

> desire

> > > for more socialization

> > > and communication (tactile and verbal), and thus

> his

> > > perception of this

> > > world and his language. These are steps that

> most

> > > kids go through during

> > > the first couple of years of life. My son

> didn't.

> > > He was too busy trying

> > > to protect himself from the world.

> > >

> > >

> > >

> > > In a nutshell, after listening to. and following

> the

> > > directions of, some

> > > very prominent doctors/therapists in the field

> of

> > > autism for many years, my

> > > sons have made more improvements since being

> treated

> > > by Dr G. I may not see

> > > any changes for 3-4 months, but then they do/say

> > > something and I'll realize

> > > that, especially my one son, couldn't " do that "

> six

> > > months previously. It's

> > > extremely important to go back and 'identify and

> > > fix' areas of development

> > > that your child may not have mastered. These

> areas

> > > are not always very

> > > obvious, but therapists, OT and SPL, should be

> able

> > > to help ID them - have

> > > them test back to infancy stages of development,

> if

>

=== message truncated ===

__________________________________________________________

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things turn out - Art Linkletter

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[Guest guest]

Have any of you tried Talk Tools therapy with your kids? We use Sara

in Tucson, AZ and both kids have progressed nicely. It’s an oral

motor program. I was really surprised to learn that my non-verbal 7 ½ year

old son had so much weakness in his jaws.

Shona

[Guest guest]

I haven't used it, but someone recommended it to me yesterday for my

non verbal 8 year old. I'm in the UK though so would probably have to

do it myself. Is that possible?

On 1 Mar 2008, at 16:25, Brent Jordan wrote:

> Have any of you tried Talk Tools therapy with your kids? We use Sara

> in Tucson, AZ and both kids have progressed nicely. It’s an

> oral

> motor program. I was really surprised to learn that my non-verbal 7

> ½ year

> old son had so much weakness in his jaws.

>

> Shona

>

>

[Guest guest]

some years ago, tried the " listening program " tomatis style. very expensive

but helped my son cognitively. he did not gain speech from the program.

i'm happy we did it.

vicki

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Tomatis you can do yourself, you can rent or buy the equipment from certain

companies.

>From: Christianne Pollock <nezumi@...>

>Date: 2008/03/01 Sat AM 10:26:54 CST

>

>Subject: Re: [sPAM] encouragment, please-Tomatis

>I haven't used it, but someone recommended it to me yesterday for my

>non verbal 8 year old. I'm in the UK though so would probably have to

>do it myself. Is that possible?

>

>

>On 1 Mar 2008, at 16:25, Brent Jordan wrote:

>

>> Have any of you tried Talk Tools therapy with your kids? We use Sara

>> in Tucson, AZ and both kids have progressed nicely. ItÂ’s an

>> oral

>> motor program. I was really surprised to learn that my non-verbal 7

>> ½ year

>> old son had so much weakness in his jaws.

>>

>> Shona

>>

>>

[Guest guest]

We do Therapeutic Listening and Samonas. Both home based programs

and we get it through the school OT. We love it, too. We got lots

of cognitive gains, language (expressive & receptive) and self

regulatory gains. We are still doing it after almost 2 years. Now

we mostly just see self regulatory gains, especially when he's having

an especially hard time in school, they just put the headphones on

him and he does much better.

Cheryl

On Mar 2, 2008, at 7:29 PM, vickila1@... wrote:

> some years ago, tried the " listening program " tomatis style. very

> expensive

> but helped my son cognitively. he did not gain speech from the

> program.

> i'm happy we did it.

>

> vicki

>

> **************Ideas to please picky eaters. Watch video on AOL Living.

> (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-

> campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

>