Re: Tanner's 2008 Talking Page update!!

[Guest guest]

, Tell Tanner he sounds great! He's come a long way!

Jennie,

Mom to Lindsey

age 11.8

In a message dated 2/7/2008 12:32:07 A.M. Eastern Standard Time,

kiddietalk@... writes:

Tanner got on the phone with today after school. You can't

hear him as well as you can -but this is an unplanned phone

conversation. Tanner talks about the Super Bowl -games he likes to

play -and what frustrates him most about speech issues. He's pretty

good about knowing how to talk now without 'sounding' apraxic. He

has a number of strategies. I'm sure as soon as he is a bit older

and if I ever talked to him about it he'd have a strong opinion about

the name " childhood apraxia of speech " as Tanner since 8 didn't like

the word " child " and considers himself to be a " young man " You'll

hear in the following how he presents himself -and in his photo (at

just 11 years old) he comes across a bit older than someone that is

11. He is sitting in the photo next to his older brother Dakota -but

he is just skimming my height at 5 foot 5 inches.

Tanner was in therapy from around 2 with not much change until we

started him on fish oils right before 3. Along with fish oils he was

in almost daily speech therapy (none on Sunday) from around 3 to 6 -

then he went to around 4 days a week from 6 to 7 -then from 7 to 10

he was down to 2 days a week...and now at 11 he only sees Dr. Renai

Jonas -a speech therapist in Boca that we love once in awhile.

Tanner takes daily

4 ProEFA

2 ProEPA

4 Alpha Gamma Vitamin E

Tanner drinks milk -has never been on a special diet -and back when

we used to meet in person he was pretty typical of most of the other

kids like him. Most of you know what worked for Tanner if you read

The Late Talker book since he inspired it. Please let me know what

you think of Tanner's speech here and I'll get him to answer any

questions himself. He's learning how to type without looking at the

computer now at school - so it's good practice for him and he's got

lots to share.

Well without further ado -here's the update of Tanner!

_http://www.debtsmarhttp://www.http://www._

(http://www.debtsmart.net/talk/tanner.html)

=====

Geng

President CHERAB Foundation

Communication Help, Education, Research, Apraxia Base

_http://www.cherab.htt_ (http://www.cherab.org/)

Co Founder Speechville

The Pink Mission

_http://www.thepinkmhttp://www_ (http://www.thepinkmission.com/)

772-335-5135

" Help give our cherubs a smile and a voice "

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

First of all, he is awesome! Your boys are so handsome! Manpretty as

my daughter says. Secondly, for get apraxia, I can't believe how much

he talks. He is not typical...he is exceptional. Most 11 year old

boys I know just are not that chatty, especially with adults and he

initiated a lot of that conversation. Thirdly, yes, he sounds awesome!

Go Tanner!

>

> Tanner got on the phone with today after school. You can't

> hear him as well as you can -but this is an unplanned phone

> conversation. Tanner talks about the Super Bowl -games he likes to

> play -and what frustrates him most about speech issues. He's pretty

> good about knowing how to talk now without 'sounding' apraxic. He

> has a number of strategies. I'm sure as soon as he is a bit older

> and if I ever talked to him about it he'd have a strong opinion

about

> the name " childhood apraxia of speech " as Tanner since 8 didn't like

> the word " child " and considers himself to be a " young man " You'll

> hear in the following how he presents himself -and in his photo (at

> just 11 years old) he comes across a bit older than someone that is

> 11. He is sitting in the photo next to his older brother Dakota -

but

> he is just skimming my height at 5 foot 5 inches.

>

> Tanner was in therapy from around 2 with not much change until we

> started him on fish oils right before 3. Along with fish oils he

was

> in almost daily speech therapy (none on Sunday) from around 3 to 6 -

> then he went to around 4 days a week from 6 to 7 -then from 7 to 10

> he was down to 2 days a week...and now at 11 he only sees Dr. Renai

> Jonas -a speech therapist in Boca that we love once in awhile.

>

> Tanner takes daily

> 4 ProEFA

> 2 ProEPA

> 4 Alpha Gamma Vitamin E

>

> Tanner drinks milk -has never been on a special diet -and back when

> we used to meet in person he was pretty typical of most of the other

> kids like him. Most of you know what worked for Tanner if you read

> The Late Talker book since he inspired it. Please let me know what

> you think of Tanner's speech here and I'll get him to answer any

> questions himself. He's learning how to type without looking at the

> computer now at school - so it's good practice for him and he's got

> lots to share.

>

> Well without further ado -here's the update of Tanner!

> http://www.debtsmart.net/talk/tanner.html

>

> =====

>

[Guest guest]

Thanks Liz!

The last part of the message actually did ask him if he had any

struggles with speech still or something like that. But yes there

are times now he talks almost nonstop. He really enjoys talking and

as I've posted he does remember some of the times where he couldn't.

It's so cool to learn about what's going on in his cute little head

after all those years of not much talking.

Tanner would love that he's called anything with the word " man " in

it! Actually his one nickname is Tanman! I thought someone was

going to comment on Tanner's favorite game (or -eek -that I let my

boys play it live!) I never thought I'd allow my boys to play games

like Halo! Glenn and I weren't going to allow it - but they were

playing it at their friend's houses. They learned how to play Halo

at friend's- and the boys in the school are all close and play

together. And these are all really nice kids -into the environment

and helping others. And it appears it's not just a Florida thing.

My nephews the same age in Jersey also play and talk about the same

games my boys play. One thing that really changed my view on

them...like sports -they provide another way for Tanner to play with

others and blend -speech doesn't matter. Gaming is something that

Tanner excels at (Mr. Memory) and even beats teens and adults that

believe themselves to be good at times. As someone that used to fear

my son would be teased and made fun of-it's incredible to see him

today. I try to keep Tanner as " normal " as possible. The only thing that

stands out

and his friend's question is that he takes so much fish oil a day -

most know now since of sleep overs etc. and it's easy to explain.

From hearing Tanner yourself you guys can have a better idea of what

I mean about Tanner having his own mind about what is " normal " or

not. And he's happy. First quarter of his life was therapy almost

24/7 -and now at 11 he's a " young man " who is talkative in spite of

his occasional speech frustrations.

=====

[Guest guest]

What is going on in their head...the thing we all want to know. So

glad you know. I am getting glimpses and more of them daily.

Articulation inpedes some of that but the nonstop talking is there

and he mastered " No " which is necessary in the presence of his

overbearing sister. He is working on " I'm first. " Again used to fight

off the sister. Siblings are great therapists the new ST tells me. I

believe it.

>

> Thanks Liz!

>

> The last part of the message actually did ask him if he had

any

> struggles with speech still or something like that. But yes there

> are times now he talks almost nonstop. He really enjoys talking and

> as I've posted he does remember some of the times where he couldn't.

> It's so cool to learn about what's going on in his cute little head

> after all those years of not much talking.

>

> Tanner would love that he's called anything with the word " man " in

> it! Actually his one nickname is Tanman! I thought someone was

> going to comment on Tanner's favorite game (or -eek -that I let my

> boys play it live!) I never thought I'd allow my boys to play games

> like Halo! Glenn and I weren't going to allow it - but they were

> playing it at their friend's houses. They learned how to play Halo

> at friend's- and the boys in the school are all close and play

> together. And these are all really nice kids -into the environment

> and helping others. And it appears it's not just a Florida thing.

> My nephews the same age in Jersey also play and talk about the same

> games my boys play. One thing that really changed my view on

> them...like sports -they provide another way for Tanner to play with

> others and blend -speech doesn't matter. Gaming is something that

> Tanner excels at (Mr. Memory) and even beats teens and adults that

> believe themselves to be good at times. As someone that used to

fear

> my son would be teased and made fun of-it's incredible to see him

> today. I try to keep Tanner as " normal " as possible. The only

thing that stands out

> and his friend's question is that he takes so much fish oil a day -

> most know now since of sleep overs etc. and it's easy to explain.

> From hearing Tanner yourself you guys can have a better idea of what

> I mean about Tanner having his own mind about what is " normal " or

> not. And he's happy. First quarter of his life was therapy almost

> 24/7 -and now at 11 he's a " young man " who is talkative in spite of

> his occasional speech frustrations.

>

> =====

>

[Guest guest]

, It is great to hear Tanner talking to scott. It has been such a long time

since I had heard him talk. Jeanne

[Guest guest]

Tanner's speech sounds so clear on my laptop!

My youngest at 4 years 8 mos does not speak as well as your son did

at 3 years 6 mos but he has come a long way.

Thank you for the inspiration and thank you Tanner for having samples

of your speech on the internet.

>

> Tanner got on the phone with today after school. You can't

> hear him as well as you can -but this is an unplanned phone

> conversation. Tanner talks about the Super Bowl -games he likes to

> play -and what frustrates him most about speech issues. He's pretty

> good about knowing how to talk now without 'sounding' apraxic. He

> has a number of strategies. I'm sure as soon as he is a bit older

> and if I ever talked to him about it he'd have a strong opinion

about

> the name " childhood apraxia of speech " as Tanner since 8 didn't like

> the word " child " and considers himself to be a " young man " You'll

> hear in the following how he presents himself -and in his photo (at

> just 11 years old) he comes across a bit older than someone that is

> 11. He is sitting in the photo next to his older brother Dakota -

but

> he is just skimming my height at 5 foot 5 inches.

>

> Tanner was in therapy from around 2 with not much change until we

> started him on fish oils right before 3. Along with fish oils he

was

> in almost daily speech therapy (none on Sunday) from around 3 to 6 -

> then he went to around 4 days a week from 6 to 7 -then from 7 to 10

> he was down to 2 days a week...and now at 11 he only sees Dr. Renai

> Jonas -a speech therapist in Boca that we love once in awhile.

>

> Tanner takes daily

> 4 ProEFA

> 2 ProEPA

> 4 Alpha Gamma Vitamin E

>

> Tanner drinks milk -has never been on a special diet -and back when

> we used to meet in person he was pretty typical of most of the other

> kids like him. Most of you know what worked for Tanner if you read

> The Late Talker book since he inspired it. Please let me know what

> you think of Tanner's speech here and I'll get him to answer any

> questions himself. He's learning how to type without looking at the

> computer now at school - so it's good practice for him and he's got

> lots to share.

>

> Well without further ado -here's the update of Tanner!

> http://www.debtsmart.net/talk/tanner.html

>

> =====

>

[Guest guest]

Hi :

Tanner sounds awesome!!! About 8 months ago I took a look at 's

talking page, and listened to Tanner when he was 3 1/2 I think. My son

was only 2 1/2 then, had only 5 words, and I so looked forward to the

days he could count, say his name, please, and thank you, etc...Adam

has done so well in the last 6 months especially, we are up to about

100 clear words, with approximations and 2-3 word combinations

throughout the day...but we seem to have hit a standstill in the last

few weeks. A DAN! doctor we just saw changed his fish oil dosages and I

am wondering if that is it. I will wait a little while longer to see

if that is possible. To hear Tanner at 11 gives me hope and

inspiration that my son will someday be able to communicate his

thoughts with others. At just 3, he also loves video games...something

I also said I would not allow. But his older brother Evan (whose 5)

loves Star Wars, so they play together, and they are so happy, and Adam

is amazing at it! Adam is so special, and I can't wait to know what he

has been thinking all of this time. I know we have a long way to go,

and at times I feel so drained about this process, but hearing Tanner

lifted my spirits today! Thanks so much!

Holly

>

> Tanner got on the phone with today after school. You can't

> hear him as well as you can -but this is an unplanned phone

> conversation. Tanner talks about the Super Bowl -games he likes to

> play -and what frustrates him most about speech issues. He's pretty

> good about knowing how to talk now without 'sounding' apraxic. He

> has a number of strategies. I'm sure as soon as he is a bit older

> and if I ever talked to him about it he'd have a strong opinion about

> the name " childhood apraxia of speech " as Tanner since 8 didn't like

> the word " child " and considers himself to be a " young man " You'll

> hear in the following how he presents himself -and in his photo (at

> just 11 years old) he comes across a bit older than someone that is

> 11. He is sitting in the photo next to his older brother Dakota -but

> he is just skimming my height at 5 foot 5 inches.

>

> Tanner was in therapy from around 2 with not much change until we

> started him on fish oils right before 3. Along with fish oils he was

> in almost daily speech therapy (none on Sunday) from around 3 to 6 -

> then he went to around 4 days a week from 6 to 7 -then from 7 to 10

> he was down to 2 days a week...and now at 11 he only sees Dr. Renai

> Jonas -a speech therapist in Boca that we love once in awhile.

>

> Tanner takes daily

> 4 ProEFA

> 2 ProEPA

> 4 Alpha Gamma Vitamin E

>

> Tanner drinks milk -has never been on a special diet -and back when

> we used to meet in person he was pretty typical of most of the other

> kids like him. Most of you know what worked for Tanner if you read

> The Late Talker book since he inspired it. Please let me know what

> you think of Tanner's speech here and I'll get him to answer any

> questions himself. He's learning how to type without looking at the

> computer now at school - so it's good practice for him and he's got

> lots to share.

>

> Well without further ado -here's the update of Tanner!

> http://www.debtsmart.net/talk/tanner.html

>

> =====

>

[Guest guest]

Holly how did your Dan change your fish oil formula and what was the

reason? Back a few years ago there were only a few people that

followed testing to see if a child needed fish oil supplementation

and if they did -the formula. Since you pretty much know in a day to

three weeks what works or not -it's pretty easy for each of us to

know what formula works or doesn't -so that's the route most of us

went and over the years thousands of us found out what worked.

http://www.cherab.org/information/historyEFA.html

When you are in person groups you get to see what works and what

didn't. In this group there could be three people that post 90% of

the messages -that doesn't make their views right -but it 'may'

appear that way.

The testing to supplement was expensive -complex -and back then had a

50% success rate in comparison to those that just gave fish oil

supplements where the success rate was over 80% successful -now again

this was in the New Jersey area.

I've noticed another difference with the recent thread about fish oil

and the " negative " behaviors in that back a few years ago even those

parents who had children with changes in behavior they kept their

child on the oils or lowered the dosage/tweaked the formula..didn't

just stop them - and as a group everyone encouraged this.

Cut to today...it's all strange in that everyone is much quicker to

stop fish oils and question if the child is allergic to soy or lemon

or milk etc. To me the first question as always would be " does your

child had behavior changes after eating a tuna fish sandwich? "

It will be interesting to see if the current group that does so much

more in testing in the biomed area than most of us ever did - and so

much more in dietary restrictions (milk came up years ago!) has the

same amazing results in the same short period of time as us " old

timers " that just took our kids to therapy -traditional speech and

occupational and some alternative therapies -and gave our children

fish oils. Back then -fish oils was the " off the wall " thing to do.

But it worked. Did it stop working or is it more in fashion to do

more and spend more -and if that is the case again does it work as

well? Or are the children in this group a different group? Are

there any parents who have kids that are not allergic to many foods

and drinks here? That thought at some point their child was " just " a

late talker only to find out there was more. Who's child is normal

socially -but just has a speech problem -can't talk. Not talking was

not linked to autism before -in this group it was mainly linked to

apraxia. Of course there have always been those children who had

autism -or autism and apraxia.

Is the group today really made up of more parents of children with

autism -or does everyone who has a child like my son Tanner who used

to just be called " apraxic " now get a diagnosis of autism and

apraxia?

Below is one archive on an example of exactly what you just said and

why biomedical testing for fish oil dosage may not be the way to go.

~~~~~~~~~~~~~~~~~~~~start of archive

Below is another parent archive of a surge on EFAs:

This story again was based on a time when we all knew each other in

person as a large group from mainly 1999 to 2003. When people post

here you don't know what's the reality for the group -you do when

you all know each other in person as a group.

Unless we understand what is going on in our children and can make

sure there is proper diagnosis/therapies for each -which we don't -

and we understand what all the many various supplements are doing to

help or not help, I'm not a huge believer of blood analysis for

neurological conditions. This is why I choose to stick to those

therapies/treatments/supplements I know are benign. I will add to

that -unless there are medical reasons.

From scientist/mathematician/mom -former CHERAB VP Suzanne

Smolyar

" From: Suzanne Smolyar

Date: Wed Mar 21, 2001 2:36 pm

Subject: RE: [ ] progress

Hi Gloria,

I wanted to say that I know exactly how you feel. Last night at the

table, 's brother (Ari 6.8) began to speak while was

trying to say something, so she looked at Ari and said in a loud and

affirmative tone " Shut up Ari, Shut up " . We were so excited and

overjoyed at her using that phrase - we forgot to explain to her

that it was inappropriate to use at the table and to her family

members. We just thought it was golden -just like you did.

Here is some background from one of my previous posts that will tell

you why this is so exciting .

" I am a mother of a beautiful 5-year-old girl, . Since the

time she was about 11 mo old - I had a feeling that something was

wrong with fine motor, gross motor and of course speech. Through

the past 4 years, I have gone to numerous neurologists, best in the

field, I must add. We have gone non-stop to therapy with ,

but the progress was painfully slow. did not speak- making

it nearly impossible for us to communicate with her. Everyday at

night I would kiss , and standing over her head I would

say, " please start talking tomorrow " - subliminal messages - hoping

they'd work.

To no avail, my child was just not talking. Therapy helped, but

progress was limited. I don't want to continue with this sob-story,

as you probably all understand the fear and frustration in parents

and the child as well.

After becoming involved with

[Guest guest]

Fish oil and E is a great thing. I get that. It is likely a whole lot

safer than other stuff. If not a quality doc like Dr. would

not post about it. But posts like this ignore the many who may have

left the board because that combo alone was not enough and it also

excludes the many for whom the formula, as you call it, is only part

of the help the successful kids are getting. There are no studies on

diet and a lot of the other stuff, I get that. I am not saying to

recommend it. Who can? We are all on our own with all of this. What I

am saying is the thousands thing, if it applies, refers to kids not

like the new breed cropping up.

Again, no credibility here I am sure as my kid technically is not

apraxic, not autistic but something light that falls in between the

two thank God and he does have a lot of the things Dr. wants

to study.

Not trying to be disrespectful. Just had to get this off my chest.

Fish oil and E won't cure an underlying gut, allergy or other issue.

It is a bandaid for now and I'd hate for someone for whom it did not

work to feel like they were not part of a club and fail to dig

deeper.

>

> Holly how did your Dan change your fish oil formula and what was

the

> reason? Back a few years ago there were only a few people that

> followed testing to see if a child needed fish oil supplementation

> and if they did -the formula. Since you pretty much know in a day

to

> three weeks what works or not -it's pretty easy for each of us to

> know what formula works or doesn't -so that's the route most of us

> went and over the years thousands of us found out what worked.

> http://www.cherab.org/information/historyEFA.html

>

> When you are in person groups you get to see what works and what

> didn't. In this group there could be three people that post 90% of

> the messages -that doesn't make their views right -but it 'may'

> appear that way.

>

> The testing to supplement was expensive -complex -and back then had

a

> 50% success rate in comparison to those that just gave fish oil

> supplements where the success rate was over 80% successful -now

again

> this was in the New Jersey area.

>

> I've noticed another difference with the recent thread about fish

oil

> and the " negative " behaviors in that back a few years ago even

those

> parents who had children with changes in behavior they kept their

> child on the oils or lowered the dosage/tweaked the formula..didn't

> just stop them - and as a group everyone encouraged this.

>

> Cut to today...it's all strange in that everyone is much quicker to

> stop fish oils and question if the child is allergic to soy or

lemon

> or milk etc. To me the first question as always would be " does

your

> child had behavior changes after eating a tuna fish sandwich? "

>

> It will be interesting to see if the current group that does so

much

> more in testing in the biomed area than most of us ever did - and

so

> much more in dietary restrictions (milk came up years ago!) has the

> same amazing results in the same short period of time as us " old

> timers " that just took our kids to therapy -traditional speech and

> occupational and some alternative therapies -and gave our children

> fish oils. Back then -fish oils was the " off the wall " thing to

do.

> But it worked. Did it stop working or is it more in fashion to do

> more and spend more -and if that is the case again does it work as

> well? Or are the children in this group a different group? Are

> there any parents who have kids that are not allergic to many foods

> and drinks here? That thought at some point their child was " just "

a

> late talker only to find out there was more. Who's child is normal

> socially -but just has a speech problem -can't talk. Not talking

was

> not linked to autism before -in this group it was mainly linked to

> apraxia. Of course there have always been those children who had

> autism -or autism and apraxia.

>

> Is the group today really made up of more parents of children with

> autism -or does everyone who has a child like my son Tanner who

used

> to just be called " apraxic " now get a diagnosis of autism and

> apraxia?

>

> Below is one archive on an example of exactly what you just said

and

> why biomedical testing for fish oil dosage may not be the way to

go.

>

> ~~~~~~~~~~~~~~~~~~~~start of archive

>

> Below is another parent archive of a surge on EFAs:

> This story again was based on a time when we all knew each other in

> person as a large group from mainly 1999 to 2003. When people post

> here you don't know what's the reality for the group -you do when

> you all know each other in person as a group.

>

> Unless we understand what is going on in our children and can make

> sure there is proper diagnosis/therapies for each -which we don't -

> and we understand what all the many various supplements are doing to

> help or not help, I'm not a huge believer of blood analysis for

> neurological conditions. This is why I choose to stick to those

> therapies/treatments/supplements I know are benign. I will add to

> that -unless there are medical reasons.

>

> From scientist/mathematician/mom -former CHERAB VP Suzanne

> Smolyar

>

> " From: Suzanne Smolyar

> Date: Wed Mar 21, 2001 2:36 pm

> Subject: RE: [ ] progress

>

>

> Hi Gloria,

>

> I wanted to say that I know exactly how you feel. Last night at the

> table, 's brother (Ari 6.8) began to speak while was

> trying to say something, so she looked at Ari and said in a loud and

> affirmative tone " Shut up Ari, Shut up " . We were so excited and

> overjoyed at her using that phrase - we forgot to explain to her

> that it was inappropriate to use at the table and to her family

> members. We just thought it was golden -just like you did.

>

> Here is some background from one of my previous posts that will tell

> you why this is so exciting .

>

> " I am a mother of a beautiful 5-year-old girl, . Since the

> time she was about 11 mo old - I had a feeling that something was

> wrong with fine motor, gross motor and of course speech. Through

> the past 4 years, I have gone to numerous neurologists, best in the

> field, I must add. We have gone non-stop to therapy with ,

> but the progress was painfully slow. did not speak- making

> it nearly impossible for us to communicate with her. Everyday at

> night I would kiss , and standing over her head I would

> say, " please start talking tomorrow " - subliminal messages - hoping

> they'd work.

>

> To no avail, my child was just not talking. Therapy helped, but

> progress was limited. I don't want to continue with this sob-story,

> as you probably all understand the fear and frustration in parents

> and the child as well.

>

> After becoming involved with

[Guest guest]

Liz your post is extremely misleading. You again are the exception

to the rule. Nobody ever said that keeping it simple to therapy and

fish oils and vitamin E works for every child here -it works for

just 'about' every child here. Yes there is that 7% or whatever -but

reading your many messages one would believe that just about all the

kids here need to explore a host of other things.

I can't disclose the details but soon all will know that the fish

oils and vitamin E alone work for I believe it was either just over

or just under 90%. You are one of the few people that post very

frequently -sometimes answering the exact same message 4 or 5 times

to the same person

I do want you to be aware that off list I have received numerous

complaints from parents who have been members here for years that

believe many of the posts in the past few months

are " upsetting " " strange " " freakish " and that they " don't recognize

the group " which is why I keep posting archives since many of them

are uncomfortable with posting their views here anymore because

they'll get slew of responses from two or three people -the same ones

that seem to have " taken over " Below is just one example without

using the person's name. We don't censor on this group so 'all' can

share and when people like the way the group is now or don't like it

I for one wish more would speak up rather than the same 3 people. As

I've said recently it's a handful of parents in this group of

thousands who in the past few months are posting 90% of the

messages. And it appears that those few people don't have kids that

fit into the norm.

recent off list we received:~~~~~~~~~~~~~~

" The list has been hijacked. I don't read the digests any more---I

scan the titles, see the subject lines and authors and hit delete.

(Gotta be on the lookout for news from Dr. and her grant

seeking, after all).

I hope someone doesn't hurt or kill their child looking for a quick

fix. I think Dr. and people like her investigating an immune-

response link and a malabsorption link are creative thinkers. But

they support the scientific method, not preying upon parents

desperate to " fix " things. I am grateful for the tone I found on

this

list when I was looking for info years ago when our child was first

diagnosed with apraxia. I'd be lost logging on today for the first

time and turned off by the freakishness.

I'd like to suggest that a general intro message be posted

periodically giving some basics about The Late Talker, therapies

(PROMPT, KAUFMANN, et al), omegas and Vit. E, and maybe some EI/IEP

intro. Something called " New to Apraxia? " or something like that

that

ties in with what you see on your website or however most people

find

the list.

As it is, it's an echo chamber among a handful of people.

Good to hear your child is thriving. "

~~~~~~~~~~~~~~~~~end of snip

I believe the suggestion for " new to apraxia " is a great idea and

will send out the new member archive next.

=====

[Guest guest]

I was unaware there was a tally, identified myself as the exception,

anticipated my lack of credibility and this post and said that what

Dr. is talking about is as good as it gets safetywise for now.

I did not mention private emails from others wondering if people are

even doing the testing mentions before putting their kids on

E. My son is not the exception by the way...he simply responds to a

lesser does of fish oil and does not need much E to get further than

most his age on this board do as articulation is all that pends. What

makes him different is the underlying health concerns I have.

>

> Liz your post is extremely misleading. You again are the exception

> to the rule. Nobody ever said that keeping it simple to therapy and

> fish oils and vitamin E works for every child here -it works for

> just 'about' every child here. Yes there is that 7% or whatever -

but

> reading your many messages one would believe that just about all the

> kids here need to explore a host of other things.

>

> I can't disclose the details but soon all will know that the fish

> oils and vitamin E alone work for I believe it was either just over

> or just under 90%. You are one of the few people that post very

> frequently -sometimes answering the exact same message 4 or 5 times

> to the same person

>

> I do want you to be aware that off list I have received numerous

> complaints from parents who have been members here for years that

> believe many of the posts in the past few months

> are " upsetting " " strange " " freakish " and that they " don't recognize

> the group " which is why I keep posting archives since many of them

> are uncomfortable with posting their views here anymore because

> they'll get slew of responses from two or three people -the same

ones

> that seem to have " taken over " Below is just one example without

> using the person's name. We don't censor on this group so 'all' can

> share and when people like the way the group is now or don't like it

> I for one wish more would speak up rather than the same 3 people.

As

> I've said recently it's a handful of parents in this group of

> thousands who in the past few months are posting 90% of the

> messages. And it appears that those few people don't have kids that

> fit into the norm.

>

> recent off list we received:~~~~~~~~~~~~~~

>

> " The list has been hijacked. I don't read the digests any more---I

> scan the titles, see the subject lines and authors and hit delete.

> (Gotta be on the lookout for news from Dr. and her grant

> seeking, after all).

>

> I hope someone doesn't hurt or kill their child looking for a quick

> fix. I think Dr. and people like her investigating an immune-

> response link and a malabsorption link are creative thinkers. But

> they support the scientific method, not preying upon parents

> desperate to " fix " things. I am grateful for the tone I found on

> this

> list when I was looking for info years ago when our child was first

> diagnosed with apraxia. I'd be lost logging on today for the first

> time and turned off by the freakishness.

>

> I'd like to suggest that a general intro message be posted

> periodically giving some basics about The Late Talker, therapies

> (PROMPT, KAUFMANN, et al), omegas and Vit. E, and maybe some EI/IEP

> intro. Something called " New to Apraxia? " or something like that

> that

> ties in with what you see on your website or however most people

> find

> the list.

>

> As it is, it's an echo chamber among a handful of people.

>

> Good to hear your child is thriving. "

>

> ~~~~~~~~~~~~~~~~~end of snip

>

> I believe the suggestion for " new to apraxia " is a great idea and

> will send out the new member archive next.

>

> =====

>

[Guest guest]

An intro message is a good idea. I am not in charge of that.

As for hurting or killing their child..i have not heard of anyone

dying of responsible dietary change when indicated by mainstream

professionals. I have not recommended anything and am not a doc so I

am not going to sit and ponder that one.

Not sure what to say. I've gotten messages to but I am not inclined

to start a whole great milk debate part two as I appreciate the

freedom of speech thing on this.

We are not at odds I assure you. Fish oil and E is a great thing.

>

> Liz your post is extremely misleading. You again are the exception

> to the rule. Nobody ever said that keeping it simple to therapy and

> fish oils and vitamin E works for every child here -it works for

> just 'about' every child here. Yes there is that 7% or whatever -

but

> reading your many messages one would believe that just about all the

> kids here need to explore a host of other things.

>

> I can't disclose the details but soon all will know that the fish

> oils and vitamin E alone work for I believe it was either just over

> or just under 90%. You are one of the few people that post very

> frequently -sometimes answering the exact same message 4 or 5 times

> to the same person

>

> I do want you to be aware that off list I have received numerous

> complaints from parents who have been members here for years that

> believe many of the posts in the past few months

> are " upsetting " " strange " " freakish " and that they " don't recognize

> the group " which is why I keep posting archives since many of them

> are uncomfortable with posting their views here anymore because

> they'll get slew of responses from two or three people -the same

ones

> that seem to have " taken over " Below is just one example without

> using the person's name. We don't censor on this group so 'all' can

> share and when people like the way the group is now or don't like it

> I for one wish more would speak up rather than the same 3 people.

As

> I've said recently it's a handful of parents in this group of

> thousands who in the past few months are posting 90% of the

> messages. And it appears that those few people don't have kids that

> fit into the norm.

>

> recent off list we received:~~~~~~~~~~~~~~

>

> " The list has been hijacked. I don't read the digests any more---I

> scan the titles, see the subject lines and authors and hit delete.

> (Gotta be on the lookout for news from Dr. and her grant

> seeking, after all).

>

> I hope someone doesn't hurt or kill their child looking for a quick

> fix. I think Dr. and people like her investigating an immune-

> response link and a malabsorption link are creative thinkers. But

> they support the scientific method, not preying upon parents

> desperate to " fix " things. I am grateful for the tone I found on

> this

> list when I was looking for info years ago when our child was first

> diagnosed with apraxia. I'd be lost logging on today for the first

> time and turned off by the freakishness.

>

> I'd like to suggest that a general intro message be posted

> periodically giving some basics about The Late Talker, therapies

> (PROMPT, KAUFMANN, et al), omegas and Vit. E, and maybe some EI/IEP

> intro. Something called " New to Apraxia? " or something like that

> that

> ties in with what you see on your website or however most people

> find

> the list.

>

> As it is, it's an echo chamber among a handful of people.

>

> Good to hear your child is thriving. "

>

> ~~~~~~~~~~~~~~~~~end of snip

>

> I believe the suggestion for " new to apraxia " is a great idea and

> will send out the new member archive next.

>

> =====

>

[Guest guest]

By the way, my son is in the 90%

> >

> > Liz your post is extremely misleading. You again are the

exception

> > to the rule. Nobody ever said that keeping it simple to therapy

and

> > fish oils and vitamin E works for every child here -it works for

> > just 'about' every child here. Yes there is that 7% or whatever -

> but

> > reading your many messages one would believe that just about all

the

> > kids here need to explore a host of other things.

> >

> > I can't disclose the details but soon all will know that the fish

> > oils and vitamin E alone work for I believe it was either just

over

> > or just under 90%. You are one of the few people that post very

> > frequently -sometimes answering the exact same message 4 or 5

times

> > to the same person

> >

> > I do want you to be aware that off list I have received numerous

> > complaints from parents who have been members here for years that

> > believe many of the posts in the past few months

> > are " upsetting " " strange " " freakish " and that they " don't

recognize

> > the group " which is why I keep posting archives since many of them

> > are uncomfortable with posting their views here anymore because

> > they'll get slew of responses from two or three people -the same

> ones

> > that seem to have " taken over " Below is just one example without

> > using the person's name. We don't censor on this group so 'all'

can

> > share and when people like the way the group is now or don't like

it

> > I for one wish more would speak up rather than the same 3

people.

> As

> > I've said recently it's a handful of parents in this group of

> > thousands who in the past few months are posting 90% of the

> > messages. And it appears that those few people don't have kids

that

> > fit into the norm.

> >

> > recent off list we received:~~~~~~~~~~~~~~

> >

> > " The list has been hijacked. I don't read the digests any more---I

> > scan the titles, see the subject lines and authors and hit delete.

> > (Gotta be on the lookout for news from Dr. and her grant

> > seeking, after all).

> >

> > I hope someone doesn't hurt or kill their child looking for a

quick

> > fix. I think Dr. and people like her investigating an

immune-

> > response link and a malabsorption link are creative thinkers. But

> > they support the scientific method, not preying upon parents

> > desperate to " fix " things. I am grateful for the tone I found on

> > this

> > list when I was looking for info years ago when our child was

first

> > diagnosed with apraxia. I'd be lost logging on today for the first

> > time and turned off by the freakishness.

> >

> > I'd like to suggest that a general intro message be posted

> > periodically giving some basics about The Late Talker, therapies

> > (PROMPT, KAUFMANN, et al), omegas and Vit. E, and maybe some

EI/IEP

> > intro. Something called " New to Apraxia? " or something like that

> > that

> > ties in with what you see on your website or however most people

> > find

> > the list.

> >

> > As it is, it's an echo chamber among a handful of people.

> >

> > Good to hear your child is thriving. "

> >

> > ~~~~~~~~~~~~~~~~~end of snip

> >

> > I believe the suggestion for " new to apraxia " is a great idea and

> > will send out the new member archive next.

> >

> > =====

> >

[Guest guest]

Liz I'm sorry if my message came across as an attack on you. Yes you

do send out lots -but you send out some very useful messages and are

always there to help others which is the core of this group. I

believe it's because of you that my family now cooks with coconut

oil! I was in a rush and answering on the go which isn't always the

best. I meant exception in the same reason you brought up -you have

some underlying health concerns. No need to beat it -we both know

that there are directions in this group that have changed. While I'm

a huge fan of change -there are some traditions that are worth

keeping. Back to basics more therapy and new member advice is

greatly lacking -and that's something we can be aware of when people

ask questions and work on improving as a group. Peace.

=====