RE: Don't rock the boat, don't tip the boat over

[Guest guest]

,

If you can't discuss it all here then what is the point of the group? I think

we are all pretty good about all who forge their own way, trying new therapies,

new meds, etc. I for one have been looking in to the biomed direction. Trying

to work and get the money to start the processes. Not to mention to catch us up

from all the years I have not worked normal job.

Dr. Capone did tell me that he is not against anything if we as parents think it

will help. Many therapies help some children and then don't help others. We

have to try, right? As for , even she says this same thing. It doesn't

work for everyone (just like chemo doesn't cure everyone). But you try the

things you can, and keep trying. I for one never thought I would put Jake on

meds and yet here we are! Risperdal and Focalin. We started about at the age

your daughter is now. Will it work for her? No one knows. It could make huge

improvements, or it could do nothing.

We always have to be respectful of everyone's opinions. Just because one person

likes or dislikes a therapy or a person or an organization doesn't mean we

should not discuss it. We just have to be mindful of our words and not let

emails take a tone that was not intended. Sometimes I also think that many of

us know each other so well that we forget that others might not see our humor or

tone! ha!

Six was a hard time for us at our house. Jake was more and more frustrated, I

was more and more tired and no one was all that happy. We finally did go to Dr.

Capone, ask for meds, went to see Dr. Grace at the behavior clinic, worked hard

on GF diet, and then finally started to see results. It did not happen over

night but little baby steps. so hang in there! lean on us when your life is

crazy. We are all crazy here also!

Holly

Don't rock the boat, don't tip the boat over

Hi all,

Well, I do not want to get into the whole issues of the diets etc, all the

baggage that goes with it. I am sorry if anyone felt that way. It was not my

intention!!!

I agree, our kids HAVE to communicate, in some way. It is SO hard to not know

what they want. has no words, signs, PECS, pointing, device etc. I do

tend to think gives people false hope. And I do think some things work for

others, and not for another group. I just was basically curious, and should have

phrased that better. I am just so lost, and angry that I cannot get into Angie's

world. We try so much, and there never seems to be progres. She is 6 and has

only said 1 word, " Da-da " I wish we lived closer to Capone, we're in CA, and

might have to make the trip. We saw him here in Sacramento at the convention, he

had said 2/3 of his patients have no language. So that makes me wonder if the DS

plays into it differently. I agree, we are the pioneers!

Sorry if I offended anyone!

[Guest guest]

I agree - this list is a life saver BECAUSE we can express our hopes, fears,

ideas, crazy thinking, sstrange theories we have heard - and all of us can

decide what and which is appropriate for our family.

I think that and Jim Cary her significant other are not bad people,

but I also think they have little clue about the rest of the worlds' life

where money is not an issue. I also cannot see from the early films of

's son that says to me that he is autistic. Sorry! He did not look

like my son!

Also, Elie was young when Dixie what ever her name is started touting

Piracetem . then the doc who headed the DS clinic in Norfolk at that time

also joined the Piracetem bandwagon. I never saw any difference in Dixie's

child in the before and after pictures. I guess it is just me.

Then there were those people pushing tongue surgery to improve appearances.

Again - I saw so little difference that I wasn't interested in this

experiment for my son.

So I am an old mother and very cynical. Unless I see a double blind study,

I am unlikely to expend the extra energy that is required.

My compromises are these: for years Elie took a powdered all purpose

vitamin from Vitamin World.

For years he had extra OT and Speech when ever I could either find the

money, convince a charity, or have the insurance to cover it.

During his teen years we tried the various drugs like Risperdal, Seroquel,

all the ADHD meds, and bad old Zoloft. Now NADA except for mild allergies

when he takes either Clarin or Benedryl.

We have paid extraordinary money for a functional assessment at least twice

for behavior and so we could formulate a behavior plan. But the best was

from the school psychologist when he was 16.

What I am trying to say, is that each of us has ato do what we figure to be

best for our situation. And we don;t alwayas agree with what others

choose. Ain't that life????

>

>

> ,

> If you can't discuss it all here then what is the point of the group? I

> think we are all pretty good about all who forge their own way, trying new

> therapies, new meds, etc. I for one have been looking in to the biomed

> direction. Trying to work and get the money to start the processes. Not to

> mention to catch us up from all the years I have not worked normal job.

>

> Dr. Capone did tell me that he is not against anything if we as parents

> think it will help. Many therapies help some children and then don't help

> others. We have to try, right? As for , even she says this same thing.

> It doesn't work for everyone (just like chemo doesn't cure everyone). But

> you try the things you can, and keep trying. I for one never thought I would

> put Jake on meds and yet here we are! Risperdal and Focalin. We started

> about at the age your daughter is now. Will it work for her? No one knows.

> It could make huge improvements, or it could do nothing.

>

> We always have to be respectful of everyone's opinions. Just because one

> person likes or dislikes a therapy or a person or an organization doesn't

> mean we should not discuss it. We just have to be mindful of our words and

> not let emails take a tone that was not intended. Sometimes I also think

> that many of us know each other so well that we forget that others might not

> see our humor or tone! ha!

>

> Six was a hard time for us at our house. Jake was more and more frustrated,

> I was more and more tired and no one was all that happy. We finally did go

> to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior clinic,

> worked hard on GF diet, and then finally started to see results. It did not

> happen over night but little baby steps. so hang in there! lean on us when

> your life is crazy. We are all crazy here also!

> Holly

>

> Don't rock the boat, don't tip the boat over

>

> Hi all,

> Well, I do not want to get into the whole issues of the diets etc, all the

> baggage that goes with it. I am sorry if anyone felt that way. It was not my

> intention!!!

> I agree, our kids HAVE to communicate, in some way. It is SO hard to not

> know what they want. has no words, signs, PECS, pointing, device etc.

> I do tend to think gives people false hope. And I do think some things

> work for others, and not for another group. I just was basically curious,

> and should have phrased that better. I am just so lost, and angry that I

> cannot get into Angie's world. We try so much, and there never seems to be

> progres. She is 6 and has only said 1 word, " Da-da " I wish we lived closer

> to Capone, we're in CA, and might have to make the trip. We saw him here in

> Sacramento at the convention, he had said 2/3 of his patients have no

> language. So that makes me wonder if the DS plays into it differently. I

> agree, we are the pioneers!

> Sorry if I offended anyone!

>

>

>

[Guest guest]

But Sara, did you try Reiki? I'm just kidding. I really liked your post

except I'm not kidding so much about the Reiki part. My 10 year old was not

adopted until he was 3, how old was Elie? Tony was left for days at a time

without human interaction and eventually left in a homeless shelter. He is

so completely " not connected " . By that I mean, he has many skills and

abilities but he can't stay with anything. He has responded so well to

massage and cranio-sacrol therapy that I'm thinking of Reiki. I like the

idea that he can maybe integrate some of his sensory needs.

Does anyone have any experience? But it would be like you said Sara, if I'm

going to find some extra money I would rather go with the tried and true OT.

While my older son Isaac LIVES for school, we are homeschooling Tony this

year and he has never been happier or more productive.

I like to think that my sons are proof positive there isn't one treatment

that works. My boys are entirely different, best of friends and the only

solid common ground in assisting them is that they need structure in their

days and high expectations.

Both boys are gluten free and casein free because Isaac is allergic to

gluten, milk, soy, artificial dyes, yeast, oranges and chicken unless it is

organic. So he must really be allergic to whatever they put in chicken?

There are never enough answers but if it works, that is what is most

important.

I would give anything for a medication that would help Isaac figure out

social interactions but one doesn't seem to exist. Isaac is very social and

when I am present to interpret for him how others respond to him, he does

fine. If someone is unavailable to fill this role, Isaac creates chaos.

For example, if Isaac goes up to his Special Olympics team and says " hi " , he

will notice the kid who did not say " hi " , not the one who did. If I pull

him aside and say, " Ron " said hi, he will happily change gears. He just

wants SOMEONE to say " hi " . But this constant interpreting is exhausting. I

gave just one small example but this goes on all day long, along with me

constant explaining to him why the character on the DVD said this or that.

Do others experience this with your kids? Just wondering how everyone stays

sane.

Thanks,

Lori

_____

From: [mailto: ] On Behalf

Of Sara Cohen

Sent: Sunday, September 20, 2009 9:22 PM

To:

Subject: Re: Don't rock the boat, don't tip the boat over

I agree - this list is a life saver BECAUSE we can express our hopes, fears,

ideas, crazy thinking, sstrange theories we have heard - and all of us can

decide what and which is appropriate for our family.

I think that and Jim Cary her significant other are not bad people,

but I also think they have little clue about the rest of the worlds' life

where money is not an issue. I also cannot see from the early films of

's son that says to me that he is autistic. Sorry! He did not look

like my son!

Also, Elie was young when Dixie what ever her name is started touting

Piracetem . then the doc who headed the DS clinic in Norfolk at that time

also joined the Piracetem bandwagon. I never saw any difference in Dixie's

child in the before and after pictures. I guess it is just me.

Then there were those people pushing tongue surgery to improve appearances.

Again - I saw so little difference that I wasn't interested in this

experiment for my son.

So I am an old mother and very cynical. Unless I see a double blind study,

I am unlikely to expend the extra energy that is required.

My compromises are these: for years Elie took a powdered all purpose

vitamin from Vitamin World.

For years he had extra OT and Speech when ever I could either find the

money, convince a charity, or have the insurance to cover it.

During his teen years we tried the various drugs like Risperdal, Seroquel,

all the ADHD meds, and bad old Zoloft. Now NADA except for mild allergies

when he takes either Clarin or Benedryl.

We have paid extraordinary money for a functional assessment at least twice

for behavior and so we could formulate a behavior plan. But the best was

from the school psychologist when he was 16.

What I am trying to say, is that each of us has ato do what we figure to be

best for our situation. And we don;t alwayas agree with what others

choose. Ain't that life????

On Sun, Sep 20, 2009 at 9:26 PM, Holly <hdgigliogmail (DOT)

<mailto:hdgiglio%40gmail.com> com> wrote:

>

>

> ,

> If you can't discuss it all here then what is the point of the group? I

> think we are all pretty good about all who forge their own way, trying new

> therapies, new meds, etc. I for one have been looking in to the biomed

> direction. Trying to work and get the money to start the processes. Not to

> mention to catch us up from all the years I have not worked normal job.

>

> Dr. Capone did tell me that he is not against anything if we as parents

> think it will help. Many therapies help some children and then don't help

> others. We have to try, right? As for , even she says this same

thing.

> It doesn't work for everyone (just like chemo doesn't cure everyone). But

> you try the things you can, and keep trying. I for one never thought I

would

> put Jake on meds and yet here we are! Risperdal and Focalin. We started

> about at the age your daughter is now. Will it work for her? No one knows.

> It could make huge improvements, or it could do nothing.

>

> We always have to be respectful of everyone's opinions. Just because one

> person likes or dislikes a therapy or a person or an organization doesn't

> mean we should not discuss it. We just have to be mindful of our words and

> not let emails take a tone that was not intended. Sometimes I also think

> that many of us know each other so well that we forget that others might

not

> see our humor or tone! ha!

>

> Six was a hard time for us at our house. Jake was more and more

frustrated,

> I was more and more tired and no one was all that happy. We finally did go

> to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior clinic,

> worked hard on GF diet, and then finally started to see results. It did

not

> happen over night but little baby steps. so hang in there! lean on us when

> your life is crazy. We are all crazy here also!

> Holly

>

> Don't rock the boat, don't tip the boat over

>

> Hi all,

> Well, I do not want to get into the whole issues of the diets etc, all the

> baggage that goes with it. I am sorry if anyone felt that way. It was not

my

> intention!!!

> I agree, our kids HAVE to communicate, in some way. It is SO hard to not

> know what they want. has no words, signs, PECS, pointing, device

etc.

> I do tend to think gives people false hope. And I do think some

things

> work for others, and not for another group. I just was basically curious,

> and should have phrased that better. I am just so lost, and angry that I

> cannot get into Angie's world. We try so much, and there never seems to be

> progres. She is 6 and has only said 1 word, " Da-da " I wish we lived closer

> to Capone, we're in CA, and might have to make the trip. We saw him here

in

> Sacramento at the convention, he had said 2/3 of his patients have no

> language. So that makes me wonder if the DS plays into it differently. I

> agree, we are the pioneers!

> Sorry if I offended anyone!

>

>

>

[Guest guest]

Elie was in a hospital back ward for 9 months. HE was picked up every three

hours to change and feed. Otherwise he was left on his back. We got him at

9 months. HE was very weak - couldn;t hold a toy, roll over, hold his head

up, sit without much propping, etc.

We didn't use Reiki - don;t think we knew of it. But we had a South African

PT friend who came to the house for his very first therapy. She introduced

me to the big ball which we rolled him on for a few hours a day. She also

showed us how to lay him on his belly and put a toy in front of him for him

to try to reach for - she also showed us how to put a foam pad under his

chin so that when he dropped his head after a few seconds, he wouldn't knock

himself out hitting the stone floor!!!

We got him at 9 months, placed him with another family for adoption at

2yr6mo, and I took him back at 3 and adopted him myself. The placement

wasn't good for him.

We did use the Wilbarger protocol for a couple of years, but Elie was sooooo

old when we discovered this therapy. He really didn't tolerate it well.

Now he HATES being massaged or rubbed. HE will only aira dry after a bath.

Tolerates shampooing barely - which is why I like his hair to be short so we

can be done fast. Same with shaving - absolutely hates it, but tolerates it

if we are quick. NO toothbrushing since he outgrew the hammerhold.

>

>

> But Sara, did you try Reiki? I'm just kidding. I really liked your post

> except I'm not kidding so much about the Reiki part. My 10 year old was not

> adopted until he was 3, how old was Elie? Tony was left for days at a time

> without human interaction and eventually left in a homeless shelter. He is

> so completely " not connected " . By that I mean, he has many skills and

> abilities but he can't stay with anything. He has responded so well to

> massage and cranio-sacrol therapy that I'm thinking of Reiki. I like the

> idea that he can maybe integrate some of his sensory needs.

>

> Does anyone have any experience? But it would be like you said Sara, if I'm

> going to find some extra money I would rather go with the tried and true

> OT.

>

> While my older son Isaac LIVES for school, we are homeschooling Tony this

> year and he has never been happier or more productive.

>

> I like to think that my sons are proof positive there isn't one treatment

> that works. My boys are entirely different, best of friends and the only

> solid common ground in assisting them is that they need structure in their

> days and high expectations.

>

> Both boys are gluten free and casein free because Isaac is allergic to

> gluten, milk, soy, artificial dyes, yeast, oranges and chicken unless it is

> organic. So he must really be allergic to whatever they put in chicken?

> There are never enough answers but if it works, that is what is most

> important.

>

> I would give anything for a medication that would help Isaac figure out

> social interactions but one doesn't seem to exist. Isaac is very social and

> when I am present to interpret for him how others respond to him, he does

> fine. If someone is unavailable to fill this role, Isaac creates chaos.

> For example, if Isaac goes up to his Special Olympics team and says " hi " ,

> he

> will notice the kid who did not say " hi " , not the one who did. If I pull

> him aside and say, " Ron " said hi, he will happily change gears. He just

> wants SOMEONE to say " hi " . But this constant interpreting is exhausting. I

> gave just one small example but this goes on all day long, along with me

> constant explaining to him why the character on the DVD said this or that.

> Do others experience this with your kids? Just wondering how everyone stays

> sane.

>

> Thanks,

>

> Lori

>

> _____

>

> From: [mailto:

> ] On Behalf

> Of Sara Cohen

> Sent: Sunday, September 20, 2009 9:22 PM

> To:

> Subject: Re: Don't rock the boat, don't tip the boat over

>

>

> I agree - this list is a life saver BECAUSE we can express our hopes,

> fears,

> ideas, crazy thinking, sstrange theories we have heard - and all of us can

> decide what and which is appropriate for our family.

>

> I think that and Jim Cary her significant other are not bad people,

> but I also think they have little clue about the rest of the worlds' life

> where money is not an issue. I also cannot see from the early films of

> 's son that says to me that he is autistic. Sorry! He did not look

> like my son!

>

> Also, Elie was young when Dixie what ever her name is started touting

> Piracetem . then the doc who headed the DS clinic in Norfolk at that time

> also joined the Piracetem bandwagon. I never saw any difference in Dixie's

> child in the before and after pictures. I guess it is just me.

>

> Then there were those people pushing tongue surgery to improve appearances.

> Again - I saw so little difference that I wasn't interested in this

> experiment for my son.

>

> So I am an old mother and very cynical. Unless I see a double blind study,

> I am unlikely to expend the extra energy that is required.

>

> My compromises are these: for years Elie took a powdered all purpose

> vitamin from Vitamin World.

>

> For years he had extra OT and Speech when ever I could either find the

> money, convince a charity, or have the insurance to cover it.

>

> During his teen years we tried the various drugs like Risperdal, Seroquel,

> all the ADHD meds, and bad old Zoloft. Now NADA except for mild allergies

> when he takes either Clarin or Benedryl.

>

> We have paid extraordinary money for a functional assessment at least twice

> for behavior and so we could formulate a behavior plan. But the best was

> from the school psychologist when he was 16.

> What I am trying to say, is that each of us has ato do what we figure to be

> best for our situation. And we don;t alwayas agree with what others

> choose. Ain't that life????

> On Sun, Sep 20, 2009 at 9:26 PM, Holly <hdgigliogmail (DOT)

> <mailto:hdgiglio%40gmail.com <hdgiglio%2540gmail.com>> com> wrote:

>

> >

> >

> > ,

> > If you can't discuss it all here then what is the point of the group? I

> > think we are all pretty good about all who forge their own way, trying

> new

> > therapies, new meds, etc. I for one have been looking in to the biomed

> > direction. Trying to work and get the money to start the processes. Not

> to

> > mention to catch us up from all the years I have not worked normal job.

> >

> > Dr. Capone did tell me that he is not against anything if we as parents

> > think it will help. Many therapies help some children and then don't help

> > others. We have to try, right? As for , even she says this same

> thing.

> > It doesn't work for everyone (just like chemo doesn't cure everyone). But

> > you try the things you can, and keep trying. I for one never thought I

> would

> > put Jake on meds and yet here we are! Risperdal and Focalin. We started

> > about at the age your daughter is now. Will it work for her? No one

> knows.

> > It could make huge improvements, or it could do nothing.

> >

> > We always have to be respectful of everyone's opinions. Just because one

> > person likes or dislikes a therapy or a person or an organization doesn't

> > mean we should not discuss it. We just have to be mindful of our words

> and

> > not let emails take a tone that was not intended. Sometimes I also think

> > that many of us know each other so well that we forget that others might

> not

> > see our humor or tone! ha!

> >

> > Six was a hard time for us at our house. Jake was more and more

> frustrated,

> > I was more and more tired and no one was all that happy. We finally did

> go

> > to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior

> clinic,

> > worked hard on GF diet, and then finally started to see results. It did

> not

> > happen over night but little baby steps. so hang in there! lean on us

> when

> > your life is crazy. We are all crazy here also!

> > Holly

> >

> > Don't rock the boat, don't tip the boat over

> >

> > Hi all,

> > Well, I do not want to get into the whole issues of the diets etc, all

> the

> > baggage that goes with it. I am sorry if anyone felt that way. It was not

> my

> > intention!!!

> > I agree, our kids HAVE to communicate, in some way. It is SO hard to not

> > know what they want. has no words, signs, PECS, pointing, device

> etc.

> > I do tend to think gives people false hope. And I do think some

> things

> > work for others, and not for another group. I just was basically curious,

> > and should have phrased that better. I am just so lost, and angry that I

> > cannot get into Angie's world. We try so much, and there never seems to

> be

> > progres. She is 6 and has only said 1 word, " Da-da " I wish we lived

> closer

> > to Capone, we're in CA, and might have to make the trip. We saw him here

> in

> > Sacramento at the convention, he had said 2/3 of his patients have no

> > language. So that makes me wonder if the DS plays into it differently. I

> > agree, we are the pioneers!

> > Sorry if I offended anyone!

> >

> >

> >

[Guest guest]

, I wrote to you offline. This is a support group and I support you and the

others. Cyndi B

>

> Hi all,

> Well, I do not want to get into the whole issues of the diets etc, all the

baggage that goes with it. I am sorry if anyone felt that way. It was not my

intention!!!

> I agree, our kids HAVE to communicate, in some way. It is SO hard to not know

what they want. has no words, signs, PECS, pointing, device etc. I do

tend to think gives people false hope. And I do think some things work for

others, and not for another group. I just was basically curious, and should have

phrased that better. I am just so lost, and angry that I cannot get into Angie's

world. We try so much, and there never seems to be progres. She is 6 and has

only said 1 word, " Da-da " I wish we lived closer to Capone, we're in CA, and

might have to make the trip. We saw him here in Sacramento at the convention, he

had said 2/3 of his patients have no language. So that makes me wonder if the DS

plays into it differently. I agree, we are the pioneers!

> Sorry if I offended anyone!

>

>

[Guest guest]

>>>>>So I am an old mother and very cynical. Unless I see a double blind study,

I am unlikely to expend the extra energy that is required.<<<<<

....I'm right behind ya momma!(agewise). I have to fight these days to keep

from sounding too jaded and skeptical of " new " treatments (many of which are

retreads) in front of newer parents. I don't like that about myself but hey.

One comment about double blind studies...much as I too like to see them, so

often with my kid...with any tried and true, well proven studies, meds

treatments etc turns out to be the .000001% of the population to have a

reaction to it. I've finally just accepted that's the way it is. She is

invariably the exception to any rule. And I get so sick of doctors saying " Well!

I've never seen this before/heard of this before/seen this written anywhere "

Sheesh....I'm like - Dude! write it down now! You're seeing/ hearing it today.

This is the main reason I'm leery of doing flu shots with her, vaccinations,

many DAN treatments, new foods, meds etc.

I just got copies of her records from the GI doc to take to the new " adult " GI

doc and there are comments on there about us not being compliant with the their

plan of treatment. They rxed Pentasa which, like a bad bad mommy I refused to

dose completely...just a half dose. She spiked a high fever within a couple of

hours, vomited violently and repeatedly and got in bed and lay there limp as a

dead person for 12 hours till it wore off. Scared the you know what out of me.

(I'm thinking now it may have been a reaction to a salicylate based med...she'd

never had aspirin before so I'm guessing she's allergic to it).

Then like an idiot we waited 2 weeks and tried it again with the same results.

They had never heard of such a reaction! So I'm noncompliant because I refused

to keep giving it to her. Later on some other lists for autism and GI problems I

ran into a few...not many...but a few parents of kids who had experienced

similar symptoms with this med. I was trying like

heck to avoid prednisone which was next on the list of treatment options.

Ohe well.....

sorry to rant. But it really felt good.

Sherry

[Guest guest]

>>>>Also, Elie was young when Dixie what ever her name is started touting

Piracetem . then the doc who headed the DS clinic in Norfolk at that time

also joined the Piracetem bandwagon. I never saw any difference in Dixie's

child in the before and after pictures. I guess it is just me.<<<<<

LOL....do you want to see all the " before " pictures of I took before

starting Nutrivene? Not much point in doing " afters " as she still looks the

same. We tried Piracetam and she did unbelievably well for a couple of weeks.

She got affectionate and sociable and verbal and at the two week mark she began

hanging from the ceiling fans, flitting around like a mad child.

The one thing I will always be indebted to Dixie for is the amino acid

connection. could not take the readymade formulas of NTV at all, however

by isolating the socalled nighttime formula and trying her on Tryptophan with

the new knowledge they presented on how to give it (ie withOUT protein) we were

able to get her to sleep for more than 2 hours at a time for the first time in

her life. She was one of the ones who ramped up on Benedryl...as usual...the

exception.

It's a real blessing to be able to discuss these topics on this list now. I was

very disappointed to realize the TNI warfare was still rampant on the DS Nodak

list which I made the mistake of tuning back into a couple of months ago. Can't

believe that's still such an issue...for either side. I think we've all been

thru enough here to know that there can be no " sides " for us. We have to be

greatful for every Risperdal/Reiki tip we get and use our own hearts, guts and

brains to make our decisions and more power to all of us. (That sounded pretty

gross).

With any luck parents coming here in the future will have the benefit of all our

successes and failures.

Sherry

[Guest guest]

Sherry,

Isn't it interesting that when we following with issues that somehow those

things get omitted from the documentation as well? Jake only had 1 reaction to

a shot. It was the Prevnar. There is absolutely no documentation that we came

to the office with a high fever, that Jake's leg was huge and swollen and that

they wrote an adverse reaction sheet to go back to the tracking people.

Nothing! Did I make this entire episode up? It was a pretty clear and

upsetting time for us. However, I am sure if I called for something that they

consider sillyl I would surely have those hysteria comments as well.

This month I am pretty ticked about my doctors so I am right there with you! I

am tired of being the one with more information than my doctors have. It is

exhausting.

Holly

[Guest guest]

Sherry, I am with you on the Nutrivene D with Piracetam. I remember Dixie Tafoua

and her little girl. I asked Dr. Capone about Piracetam and he said it was not

used much these days. 's dan doc does not like Piracetam. When I looked a

the pictures of Dixie's daughter she looked different but then so does in

different pictures. Sometimes looks tired and other times he looks happy.

This family is going to be featured in the FAll Act Today Newsletter and there

will be pictures of from little guy until today. Lots of things have

changed his looks in the last couple of years like when he had cellulitis of the

face and head. The poor guy looked like he had elephant man syndrome. All of us

on this list should not judge what others want to do or are doing. After all it

is all about helping the child that cannot help themselves. Cyndi B

>

> >>>>Also, Elie was young when Dixie what ever her name is started touting

> Piracetem . then the doc who headed the DS clinic in Norfolk at that time

> also joined the Piracetem bandwagon. I never saw any difference in Dixie's

> child in the before and after pictures. I guess it is just me.<<<<<

>

> LOL....do you want to see all the " before " pictures of I took before

starting Nutrivene? Not much point in doing " afters " as she still looks the

same. We tried Piracetam and she did unbelievably well for a couple of weeks.

She got affectionate and sociable and verbal and at the two week mark she began

hanging from the ceiling fans, flitting around like a mad child.

>

> The one thing I will always be indebted to Dixie for is the amino acid

connection. could not take the readymade formulas of NTV at all, however

by isolating the socalled nighttime formula and trying her on Tryptophan with

the new knowledge they presented on how to give it (ie withOUT protein) we were

able to get her to sleep for more than 2 hours at a time for the first time in

her life. She was one of the ones who ramped up on Benedryl...as usual...the

exception.

>

> It's a real blessing to be able to discuss these topics on this list now. I

was very disappointed to realize the TNI warfare was still rampant on the DS

Nodak list which I made the mistake of tuning back into a couple of months ago.

Can't believe that's still such an issue...for either side. I think we've all

been thru enough here to know that there can be no " sides " for us. We have to be

greatful for every Risperdal/Reiki tip we get and use our own hearts, guts and

brains to make our decisions and more power to all of us. (That sounded pretty

gross).

>

> With any luck parents coming here in the future will have the benefit of all

our successes and failures.

> Sherry

>

>

[Guest guest]

Just think of our kids getting REIKI and Acupuncture and WIlbarger protocol

- all at the same time!!!!! The picture which is forming in my head!!

OH _ and let us not forget Leah and Ashton and Cameron winging to CA for the

HANNAH thing!!!!!

On Mon, Sep 21, 2009 at 9:36 PM, cynthiamiltonburns <

cynthiamiltonburns@...> wrote:

>

>

> Sherry, I am with you on the Nutrivene D with Piracetam. I remember Dixie

> Tafoua and her little girl. I asked Dr. Capone about Piracetam and he said

> it was not used much these days. 's dan doc does not like Piracetam.

> When I looked a the pictures of Dixie's daughter she looked different but

> then so does in different pictures. Sometimes looks tired and

> other times he looks happy. This family is going to be featured in the FAll

> Act Today Newsletter and there will be pictures of from little guy

> until today. Lots of things have changed his looks in the last couple of

> years like when he had cellulitis of the face and head. The poor guy looked

> like he had elephant man syndrome. All of us on this list should not judge

> what others want to do or are doing. After all it is all about helping the

> child that cannot help themselves. Cyndi B

> >

> > >>>>Also, Elie was young when Dixie what ever her name is started touting

> > Piracetem . then the doc who headed the DS clinic in Norfolk at that time

> > also joined the Piracetem bandwagon. I never saw any difference in

> Dixie's

> > child in the before and after pictures. I guess it is just me.<<<<<

> >

> > LOL....do you want to see all the " before " pictures of I took

> before starting Nutrivene? Not much point in doing " afters " as she still

> looks the same. We tried Piracetam and she did unbelievably well for a

> couple of weeks. She got affectionate and sociable and verbal and at the two

> week mark she began hanging from the ceiling fans, flitting around like a

> mad child.

> >

> > The one thing I will always be indebted to Dixie for is the amino acid

> connection. could not take the readymade formulas of NTV at all,

> however by isolating the socalled nighttime formula and trying her on

> Tryptophan with the new knowledge they presented on how to give it (ie

> withOUT protein) we were able to get her to sleep for more than 2 hours at a

> time for the first time in her life. She was one of the ones who ramped up

> on Benedryl...as usual...the exception.

> >

> > It's a real blessing to be able to discuss these topics on this list now.

> I was very disappointed to realize the TNI warfare was still rampant on the

> DS Nodak list which I made the mistake of tuning back into a couple of

> months ago. Can't believe that's still such an issue...for either side. I

> think we've all been thru enough here to know that there can be no " sides "

> for us. We have to be greatful for every Risperdal/Reiki tip we get and use

> our own hearts, guts and brains to make our decisions and more power to all

> of us. (That sounded pretty gross).

> >

> > With any luck parents coming here in the future will have the benefit of

> all our successes and failures.

> > Sherry

> >

> >

[Guest guest]

Holly

>>>>> Did I make this entire episode up? It was a pretty clear and upsetting

time for us. However, I am sure if I called for something that they consider

sillyl I would surely have those hysteria comments as well.

This month I am pretty ticked about my doctors so I am right there with you! I

am tired of being the one with more information than my doctors have. It is

exhausting.<<<<<

I'm hearing ya! WHY would I make this stuff up? What do they think our

motivation is?

>>>>>I think also when you get those great doctors or nurses, it really makes

you more intolerant of the bad ones! ha! I think that is my issue right now.

<<<<<<

I know. I just lost a rheumatologist who was absolutely the best and spoiled me

forever.

I'm so sorry you lost your hero. Sorry for Jake too.

One more rant just for fun. When had her second open heart surgery at

almost 8yo the surgeon who we loved thought he was doing her a favor by putting

in self dissolving stitches rather than staples. I was a little concerned

because she's very chemically sensitive but of course he'd never heard of any

problems with the stitches. She sailed thru the surgery but after we were home a

couple of days the stitches started working their way out of the incision and

all this gunk began forming and whoops...right back to the ER and ICU and 2 more

weeks of fighting off infection and the absolute worst nightmare of our lives.

Her body actually rejected the sutures.

Fast forward to an ear surgery she needed to repair a hole; the omniscient ENT

paid no heed whatsoever to my story about the stitches and he put them in her

ear. She was insane for weeks as the stitches worked their way out once more and

the surgery failed. I mean come on!? What motivation would I have to fabricate a

story about self dissolving sutures? and why could he not be openminded enough

to frigging humor me at least. I wonder if he'll think twice about it ever

again. Altho he could probably practise for 20 years and not run into another

case like my kid.

These are the crazy things we have to deal with for our kids. I've always

thought the medical (cardiac, gastro, autoimmune etc.) stuff was the worst, then

Autism, and finally little old Down Syndrome - the easiest of all.

Sherry

[Guest guest]

hey Cyndi,

You know where I have seen some amazing before and after pics? from parents of

kids who have done Oral Motor Therapy from early on...like infancy. We didn't

have any knowledge about this when was little but I've seen some amazing

changes in the jaw structure and subsequent ability to speak well...even the

nasal bridge. Mostly I've heard about Sara Rosenfeld but there are

others out there practising. Again tho...this is a really timeconsuming therapy

and the parents have to do alot of the work. Plus when your kid has Autism as

well, sticking your fingers in their mouths just doesn't seem like a smart move

and there are so many other issues to worry about.

I'm trying to locate some of the older moms on the TNI lists who did Piracetam

for awhile...looking for some feedback...but I can't find anyone who is still

even using it. I'm thinking maybe I could use some tho LOL.

I look forward to seeing your family pictures when they come out. I'm not

familiar with Act Today newsletter. You'll post about it here when it comes out

right?

And cellulitis of the face and head??? seriously?? How horrible for him...and

you.

Sherry

Sherry, I am with you on the Nutrivene D with Piracetam. I remember Dixie Tafoua

and her little girl. I asked Dr. Capone about Piracetam and he said it was not

used much these days. 's dan doc does not like Piracetam. When I looked a

the pictures of Dixie's daughter she looked different but then so does in

different pictures. Sometimes looks tired and other times he looks happy.

This family is going to be featured in the FAll Act Today Newsletter and there

will be pictures of from little guy until today. Lots of things have

changed his looks in the last couple of years like when he had cellulitis of the

face and head. The poor guy looked like he had elephant man syndrome. All of us

on this list should not judge what others want to do or are doing. After all it

is all about helping the child that cannot help themselves. Cyndi B

[Guest guest]

>>>Just think of our kids getting REIKI and Acupuncture and WIlbarger protocol

- all at the same time!!!!! The picture which is forming in my head!!<<<<

Well...might as well add in that Oral Motor Therapy and maybe some Auditory

Integration Therapy...and do it all in an HBOT chamber.

Sherry

[Guest guest]

AMEN Sherry. ? I hate the *sides* thing. ? ? I left DS nodak list ages ago. ?

You know, how can we ask for acceptance, tolerance and support if we can't even

give it to each other. ? Just because we're all in the same boat, doesn't mean

we all use the same method to get to our destination. ?Some might motor there,

some sail, some row...hell, sometimes I feel like I'm swimming pulling that boat

behind me...... Sheesh.

Hugs,

Donna

Re: Don't rock the boat, don't tip the boat over

>>>>Also, Elie was young when Dixie what ever her name is started touting

Piracetem . then the doc who headed the DS clinic in Norfolk at that time

also joined the Piracetem bandwagon. I never saw any difference in Dixie's

child in the before and after pictures. I guess it is just me.<<<<<

LOL....do you want to see all the " before " pictures of I took before

starting Nutrivene? Not much point in doing " afters " as she still looks the

same. We tried Piracetam and she did unbelievably well for a couple of weeks.

She got affectionate and sociable and verbal and at the two week mark she began

hanging from the ceiling fans, flitting around like a mad child.

The one thing I will always be indebted to Dixie for is the amino acid

connection. could not take the readymade formulas of NTV at all, however

by isolating the socalled nighttime formula and trying her on Tryptophan with

the new knowledge they presented on how to give it (ie withOUT protein) we were

able to get her to sleep for more than 2 hours at a time for the first time in

her life. She was one of the ones who ramped up on Benedryl...as usual...the

exception.

It's a real blessing to be able to discuss these topics on this list now. I was

very disappointed to realize the TNI warfare was still rampant on the DS Nodak

list which I made the mistake of tuning back into a couple of months ago. Can't

believe that's still such an issue...for either side. I think we've all been

thru enough here to know that there can be no " sides " for us. We have to be

greatful for every Risperdal/Reiki tip we get and use our own hearts, guts and

brains to make our decisions and more power to all of us. (That sounded pretty

gross).

With any luck parents coming here in the future will have the benefit of all our

successes and failures.

Sherry

[Guest guest]

Lori,

I have been skimming this topic thread & spotted the word Reiki.

What do you want to know about Reiki?

Perhaps I can provide answers. Or an insight of Reiki for those that wish to

know.

Peace.

Kris

>

> >

> >

> > ,

> > If you can't discuss it all here then what is the point of the group? I

> > think we are all pretty good about all who forge their own way, trying new

> > therapies, new meds, etc. I for one have been looking in to the biomed

> > direction. Trying to work and get the money to start the processes. Not to

> > mention to catch us up from all the years I have not worked normal job.

> >

> > Dr. Capone did tell me that he is not against anything if we as parents

> > think it will help. Many therapies help some children and then don't help

> > others. We have to try, right? As for , even she says this same

> thing.

> > It doesn't work for everyone (just like chemo doesn't cure everyone). But

> > you try the things you can, and keep trying. I for one never thought I

> would

> > put Jake on meds and yet here we are! Risperdal and Focalin. We started

> > about at the age your daughter is now. Will it work for her? No one knows.

> > It could make huge improvements, or it could do nothing.

> >

> > We always have to be respectful of everyone's opinions. Just because one

> > person likes or dislikes a therapy or a person or an organization doesn't

> > mean we should not discuss it. We just have to be mindful of our words and

> > not let emails take a tone that was not intended. Sometimes I also think

> > that many of us know each other so well that we forget that others might

> not

> > see our humor or tone! ha!

> >

> > Six was a hard time for us at our house. Jake was more and more

> frustrated,

> > I was more and more tired and no one was all that happy. We finally did go

> > to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior clinic,

> > worked hard on GF diet, and then finally started to see results. It did

> not

> > happen over night but little baby steps. so hang in there! lean on us when

> > your life is crazy. We are all crazy here also!

> > Holly

> >

> > Don't rock the boat, don't tip the boat over

> >

> > Hi all,

> > Well, I do not want to get into the whole issues of the diets etc, all the

> > baggage that goes with it. I am sorry if anyone felt that way. It was not

> my

> > intention!!!

> > I agree, our kids HAVE to communicate, in some way. It is SO hard to not

> > know what they want. has no words, signs, PECS, pointing, device

> etc.

> > I do tend to think gives people false hope. And I do think some

> things

> > work for others, and not for another group. I just was basically curious,

> > and should have phrased that better. I am just so lost, and angry that I

> > cannot get into Angie's world. We try so much, and there never seems to be

> > progres. She is 6 and has only said 1 word, " Da-da " I wish we lived closer

> > to Capone, we're in CA, and might have to make the trip. We saw him here

> in

> > Sacramento at the convention, he had said 2/3 of his patients have no

> > language. So that makes me wonder if the DS plays into it differently. I

> > agree, we are the pioneers!

> > Sorry if I offended anyone!

> >

> >

> >

[Guest guest]

Hi Kris,

I am so glad you saw my comment about Reiki. Tony had a traumatic first

three years of life, he is obviously not a good candidate for psychotherapy,

he has responded well to cranio sacrol therapy (or however you spell it). I

keep thinking we should try Reiki. He probably does not really have autism.

He probably does have a milder form of Reactive Attachment Therapy but no

one knows what that is so the neuropsychologist told us to call it autism.

He remains a very disconnected person. You should see him run. He has a

very strong body but no coordination at all. He has many academic abilities

but when he does his work, Tourette's like symptoms get in the way. Yet,

the neurologist said he doesn't have Tourette's.

I would like him to be more at peace. We are homeschooling him this year

and he is thrilled with it. I think school was sensory overload for him.

He can " read " really big words that are way above his reading level yet

reading a book longer than early first grade makes his eyes glaze over.

Yes, we got him glasses and even frames from Specs4us to fit his beautiful

little Down syndrome face.

Neither of my boys fit any of the molds, we are so atypical but Tony is

especially difficult to figure out. And he is really big on verbal

stimulation which means that he makes a lot of noises and still sucks his

thumb.

Would Reiki help him to integrate some of his sensory needs? Especially

vestibular needs and other physical needs that were not met when he was

younger, would Reiki help him with that?

And if I could have a miracle, I would really like him to lose his verbal

stimulation needs. If I have a sinus headache which sometimes happens in

the spring or fall, his favorite noise is piercing to my ears.

When I was in grad school I had friends who did research on various kinds of

" healing touch " and I'm ready to sign Tony up. My husband too :-)

Thanks,

Lori

_____

From: [mailto: ] On Behalf

Of kaprisock

Sent: Tuesday, September 22, 2009 3:50 PM

To:

Subject: Re: Don't rock the boat, don't tip the boat over

Lori,

I have been skimming this topic thread & spotted the word Reiki.

What do you want to know about Reiki?

Perhaps I can provide answers. Or an insight of Reiki for those that wish to

know.

Peace.

Kris

>

> >

> >

> > ,

> > If you can't discuss it all here then what is the point of the group? I

> > think we are all pretty good about all who forge their own way, trying

new

> > therapies, new meds, etc. I for one have been looking in to the biomed

> > direction. Trying to work and get the money to start the processes. Not

to

> > mention to catch us up from all the years I have not worked normal job.

> >

> > Dr. Capone did tell me that he is not against anything if we as parents

> > think it will help. Many therapies help some children and then don't

help

> > others. We have to try, right? As for , even she says this same

> thing.

> > It doesn't work for everyone (just like chemo doesn't cure everyone).

But

> > you try the things you can, and keep trying. I for one never thought I

> would

> > put Jake on meds and yet here we are! Risperdal and Focalin. We started

> > about at the age your daughter is now. Will it work for her? No one

knows.

> > It could make huge improvements, or it could do nothing.

> >

> > We always have to be respectful of everyone's opinions. Just because one

> > person likes or dislikes a therapy or a person or an organization

doesn't

> > mean we should not discuss it. We just have to be mindful of our words

and

> > not let emails take a tone that was not intended. Sometimes I also think

> > that many of us know each other so well that we forget that others might

> not

> > see our humor or tone! ha!

> >

> > Six was a hard time for us at our house. Jake was more and more

> frustrated,

> > I was more and more tired and no one was all that happy. We finally did

go

> > to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior

clinic,

> > worked hard on GF diet, and then finally started to see results. It did

> not

> > happen over night but little baby steps. so hang in there! lean on us

when

> > your life is crazy. We are all crazy here also!

> > Holly

> >

> > Don't rock the boat, don't tip the boat over

> >

> > Hi all,

> > Well, I do not want to get into the whole issues of the diets etc, all

the

> > baggage that goes with it. I am sorry if anyone felt that way. It was

not

> my

> > intention!!!

> > I agree, our kids HAVE to communicate, in some way. It is SO hard to not

> > know what they want. has no words, signs, PECS, pointing, device

> etc.

> > I do tend to think gives people false hope. And I do think some

> things

> > work for others, and not for another group. I just was basically

curious,

> > and should have phrased that better. I am just so lost, and angry that I

> > cannot get into Angie's world. We try so much, and there never seems to

be

> > progres. She is 6 and has only said 1 word, " Da-da " I wish we lived

closer

> > to Capone, we're in CA, and might have to make the trip. We saw him here

> in

> > Sacramento at the convention, he had said 2/3 of his patients have no

> > language. So that makes me wonder if the DS plays into it differently. I

> > agree, we are the pioneers!

> > Sorry if I offended anyone!

> >

> >

> >

[Guest guest]

Sherry, Yes I will post the pictures. I posted the pics of with Cellulitis

on our group just in case someone elses kid ever looks like that. It was

horrible and poor did not look human. The Dr.'s should have hospitalized

him instead of doing oral meds.It took alot longer to get it out of his system

because of how they treated it. Cyndi B

>

> hey Cyndi,

>

> You know where I have seen some amazing before and after pics? from parents of

kids who have done Oral Motor Therapy from early on...like infancy. We didn't

have any knowledge about this when was little but I've seen some amazing

changes in the jaw structure and subsequent ability to speak well...even the

nasal bridge. Mostly I've heard about Sara Rosenfeld but there are

others out there practising. Again tho...this is a really timeconsuming therapy

and the parents have to do alot of the work. Plus when your kid has Autism as

well, sticking your fingers in their mouths just doesn't seem like a smart move

and there are so many other issues to worry about.

>

> I'm trying to locate some of the older moms on the TNI lists who did Piracetam

for awhile...looking for some feedback...but I can't find anyone who is still

even using it. I'm thinking maybe I could use some tho LOL.

>

> I look forward to seeing your family pictures when they come out. I'm not

familiar with Act Today newsletter. You'll post about it here when it comes out

right?

>

> And cellulitis of the face and head??? seriously?? How horrible for him...and

you.

> Sherry

>

>

>

> Sherry, I am with you on the Nutrivene D with Piracetam. I remember Dixie

Tafoua and her little girl. I asked Dr. Capone about Piracetam and he said it

was not used much these days. 's dan doc does not like Piracetam. When I

looked a the pictures of Dixie's daughter she looked different but then so does

in different pictures. Sometimes looks tired and other times he looks

happy. This family is going to be featured in the FAll Act Today Newsletter and

there will be pictures of from little guy until today. Lots of things have

changed his looks in the last couple of years like when he had cellulitis of the

face and head. The poor guy looked like he had elephant man syndrome. All of us

on this list should not judge what others want to do or are doing. After all it

is all about helping the child that cannot help themselves. Cyndi B

>

>

>

[Guest guest]

Hi Lori,

What state do you live in? I will pull my files & post info for you & hopefully

some links for your specific state.

I am a Usui Ryoho Reiki practitioner and know from personal experience that

Reiki can have an extremely profound effect. Reiki has been around for a very

long time & is practiced worldwide. It is currently offered in many mainstream

prominent allopathic hospitals AND universities as well. There is ongoing

research being conducted worldwide-including the National Institute for Health

in the US. Reiki practitioners may be a nurse, a priest, a chemist, a lawyer, a

doctor, a teacher or a housewife. (Just pointing out a few I know so you get

the picture, lol)

A few things to know:

You do not have to believe in reiki for it to be effective

Reiki is NOT used in place of conventional medical procedures but as a

complement.

Reiki is not a religion

Reiki is difficult at best to explain; even moreso the effects.

Reiki is not invasive nor is it limiting

Reiki itself does not harm

Reiki can be done anywhere, anytime

Reiki works

Many reiki practitioners can come to you for either treatments or training

Only a RMT (reiki master teacher) can provide what is needed to be trained in

reiki

I always suggest that anyone seeking reiki treatments for their child, first

have a reiki session for themselves. This way one knows exactly what to expect

& how it feels and will alleviate any qualms.

I also always suggest that anyone seeking long term or ongoing reiki treatments

consider taking Reiki Level I classes. By doing so, one can then provide Reiki

treatments for self and others (albeit without charging fees). This cuts out

the cost of seeking treatment elsewhere and provides instant access when needed.

Despite what you may hear, Reiki Level I is sufficent, however most people

choose to go further in their training in order to become either a practitioner

or a teacher.

Amongst other things, Reiki works EXTREMELY well in producing a calming/serene

affect. I know of reiki practitioners/master teachers who work with people with

autism. Because reiki can also be done WITHOUT physical contact, it is ideal

for working with burn victims, autism or those in such great pain that touch is

intolerable.

Now for the confusing part. There are many many different schools of reiki;

offshoots of the original. Be wary of what you read in researching. Whether

you chose to seek Reiki sessions or a class,use personal criteria in making the

choice of who to use. IMHO-it should not be too expensive nor should it entail

lengthy commitments or any rigid dogmas/rules. The reiki practitioner you chose

should be open to providing 1:1 sessions or training, answer any questions you

have, have proof of certification and most importantly NEVER EVER promise a

medical outcome.

Again, reiki is a valid complementry alternative used worldwide. It is NOT

currently a recognized western MEDICAL practice; however it can be found

incorporated within many traditional medical practices worldwide. In other

words, never stop using traditional medical interventions or treatments. Despite

results from reiki, continue to use both allopathic & alternative

treatments-ideally as a team working hand in hand for the greatest good.

Just as leeches are again being used in conventional mediciene, acupunture is as

well. I foresee a time when many disciplines (of what is now considered

alternative or fringe practices) will be recognized & widely used as well.

Let me know if this synopsis helped & the state you live in so I can hopefully

provide you further info/links specific to your location.

Unexpected joys to you.

Kris

PS: Lori, in all honesty & integrity I cannot tell you if reiki would help your

dear son with the verbal stim. I know for a fact that it will relax & produce

serenity. I also know for a fact that reiki can provide YOU relief re sinus

headache. Seperate from reiki, I am wondering if your dear son is possibly

suffering from sinus pressure/headache as well??? Reason I mention this is that

my child will do the same occasionally & " knaw " on his thumbs-even when actively

engaged in watching a DVD or during a video game. Inevitably, a few days later

signs of illness appear or conversely it will stop as suddenly as it started

with a weather change. It has only been recently that I have noted this

correlation.

> >

> > >

> > >

> > > ,

> > > If you can't discuss it all here then what is the point of the group? I

> > > think we are all pretty good about all who forge their own way, trying

> new

> > > therapies, new meds, etc. I for one have been looking in to the biomed

> > > direction. Trying to work and get the money to start the processes. Not

> to

> > > mention to catch us up from all the years I have not worked normal job.

> > >

> > > Dr. Capone did tell me that he is not against anything if we as parents

> > > think it will help. Many therapies help some children and then don't

> help

> > > others. We have to try, right? As for , even she says this same

> > thing.

> > > It doesn't work for everyone (just like chemo doesn't cure everyone).

> But

> > > you try the things you can, and keep trying. I for one never thought I

> > would

> > > put Jake on meds and yet here we are! Risperdal and Focalin. We started

> > > about at the age your daughter is now. Will it work for her? No one

> knows.

> > > It could make huge improvements, or it could do nothing.

> > >

> > > We always have to be respectful of everyone's opinions. Just because one

> > > person likes or dislikes a therapy or a person or an organization

> doesn't

> > > mean we should not discuss it. We just have to be mindful of our words

> and

> > > not let emails take a tone that was not intended. Sometimes I also think

> > > that many of us know each other so well that we forget that others might

> > not

> > > see our humor or tone! ha!

> > >

> > > Six was a hard time for us at our house. Jake was more and more

> > frustrated,

> > > I was more and more tired and no one was all that happy. We finally did

> go

> > > to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior

> clinic,

> > > worked hard on GF diet, and then finally started to see results. It did

> > not

> > > happen over night but little baby steps. so hang in there! lean on us

> when

> > > your life is crazy. We are all crazy here also!

> > > Holly

> > >

> > > Don't rock the boat, don't tip the boat over

> > >

> > > Hi all,

> > > Well, I do not want to get into the whole issues of the diets etc, all

> the

> > > baggage that goes with it. I am sorry if anyone felt that way. It was

> not

> > my

> > > intention!!!

> > > I agree, our kids HAVE to communicate, in some way. It is SO hard to not

> > > know what they want. has no words, signs, PECS, pointing, device

> > etc.

> > > I do tend to think gives people false hope. And I do think some

> > things

> > > work for others, and not for another group. I just was basically

> curious,

> > > and should have phrased that better. I am just so lost, and angry that I

> > > cannot get into Angie's world. We try so much, and there never seems to

> be

> > > progres. She is 6 and has only said 1 word, " Da-da " I wish we lived

> closer

> > > to Capone, we're in CA, and might have to make the trip. We saw him here

> > in

> > > Sacramento at the convention, he had said 2/3 of his patients have no

> > > language. So that makes me wonder if the DS plays into it differently. I

> > > agree, we are the pioneers!

> > > Sorry if I offended anyone!

> > >

> > >

> > >

[Guest guest]

Ya'll this has been one of the most facinating topic threads I have read

in a long time..and I have no clue why it was started but I have learned alot!

Plus it made me remember. When I started teaching back in the 1980's (I am an

old-er being) very little was known of autism. Heh, about much of anything

actually. These were the days before mandated early intervention, before the

" information highway " , and so many many other things.

This thread made me remember:

When SI was virtually unknown. I recall paying to go out of town to receive

training. On my own dime & time. Not a single therapist or doctor had ever

heard of it and it STILL was not in widespread use in 1997 when I left teaching.

The county that I live in & taught in is very large. Today it has over 158,000

students & 123 schools to give an idea of how large. On top of that, it is a

county that is close to the metro area and numerous universities.

Now imagine, if you will, one small non profit building being the ONLY

facility/option for special needs kiddos from birth to age 5. Oft times the

ONLY source of info for parents.

I don't suppose many outside professionals " listened " to us about discoveries

made, little known disciplines that worked miracles, odd things presenting,

etal. We got to the point that we tried not to care and just searched for the

answers, the treatments, the interventions and sometimes made up some techniques

combining many therapeutic techniques and/or adaptations to help our kiddos.

It took almost 10 years for our 1st wave of " autistic " kids to show up. Nobody

seemed to have a clue no matter where we turned or looked. When I say wave, I

mean one child from the middle east (who defies description) followed over time

by one more. Then suddenly in the mid to late 1990's a tsunami....I kid you

not. Although to be honest in those days no one would give the autism dx before

age 5.

It was the same with fetal alchol syndrome. Angelman Syndrome. Many other

disorders. So many unknowns and no answers to be found at the time.

Being a non profit meant having the flexability to be " different " in our

approaches as well as providing 1:1 individualized programs. So what worked for

Sally might not work for ny but we looked for what would. We made

equiptment or adapted items specifically for each child. I will never forget

the time that I needed a chair that would enable a child to be part of sand box

or pool time or music therapy. A child that was cortically blind (again-no one

knew much about this) and with cp & seizures. A therapist & a plumber came to

my (her) rescue by building a chair out of PVC & webbing with safety postural

belts. Safe, lightweight & functional that enabled her to sit, learn, be.

It looked kinda like a beach chair (before they were invented). Snort, I doubt

I'd see that happening in the public schools-at least around here. Cause no one

would care enough.

My point being that the norm was not the norm. What worked was INDIVIDUALIZED.

Search for and find and often beg for the resources needed to try out. Discard

what did not work for that child. Search until an answer was found. What some

call backwards chaining. Breaking a goal down into small steps (objectives).

Seeing the strengths and using those to work on the weaknesses. Never ever stop

researching, learning and learning some more....

Towards the end of my teaching profession, as a favor to a ST, I agreed to work

with a family on the weekends whose child was a toddler with sudden onset

autism. Again, this is before the prevalence of autism seen today- mid 1990s I

think. This family took a 2nd mortgage out to pay for me & ST to be trained in

Lovaas by flying a person from UCLA to do the intensive training. With all my

experiences up to that point, if someone had told me that I would see miracles

occur in that 3 day session I would have not believed. In fact, I doubt that I

would have accepted the position based on someone telling me what occurred

within the first hour!

That incidence ( & what followed for the next few years) coupled with my own 15

years of teaching experiences caused me to forever keep an open mind. And to

remember that what once was a little known or critizied therapy would perhaps

one day become prevalent in use.

It is sometimes difficult-at least for me- to remember that very little time has

actually gone by in regards people's understanding of many disorders.

Especially autism. In so many ways, autism is in its infacy. The sad but good

news is that finally people are more aware and trying to find answers. That is

where the McCarthy types are important. They have the means, the edge to push

it out there & cause more research- more awareness.

That being said, I find it astonishing and infuriating that there are still so

many professionals that continue to have no clue or have the audacity to negate

what a parent tells them. It makes me feel like I am in a timewarp & back in

the 80s. It makes me so very weary.

Thanks for the interesting read. All of you are awesome!!!

Kris

[Guest guest]

Kris,

>>>>>This thread made me remember:

When SI was virtually unknown. I recall paying to go out of town to receive

training. On my own dime & time. Not a single therapist or doctor had ever

heard of it and it STILL was not in widespread use in 1997 when I left

teaching.<<<<<

You are a fascinating topic yourself. A professional teacher who went above and

beyond who also has a dual dx kid and knows how to do Reiki?!

But this SI issue is close to my heart. We started in NACD when she was 2.

That would have been 1991. We were given a huge program to address sensory

needs...every sense including proprioceptive and vestibular. She had had a small

taste of OT before that where they worked on pincer grasp etc. traditional

stuff.

But this made all the difference. We didn't have her in school and didn't do

regular therapy during this period so I don't really know what was happening for

professionals then. It's great to hear your input. It wasn't later (like2000)

till I realized SI was the " new big thing " for Autism and DD. Sheesh....Jean

Ayres wrote the definitive book in 1970 and was dead by 1989. And Carl Delacato

published " The Ultimate Stranger " ...an extremely sobering look at sensory

problems in Autistic kids....in 1965! How fantastic that you actually pursued

this on your own and your students were able to benefit so early on. By the time

we had OTs coming to the house after J got medicaid...they were amazed at the

wild sensory playground we had made of our living room and so shocked that

anyone as dumb as a parent actually knew of it at all.

>>>>>>We made equiptment or adapted items specifically for each child. I will

never forget the time that I needed a chair that would enable a child to be part

of sand box or pool time or music therapy. <<<<<<<

This was something NACD provided also....they had plans drawn up to build needed

equipment for practically nothing...things you could find in catalogs (maybe)

for $1000 we made for $20. And their programs too were absolutely individualized

to suit each child. This was back in the day (creak, groan) when they were just

a grassroots organization. They're so big now and alot more expensive. Still

their techniques and info are out there now and parents can learn from each

other if they want to.

(I must throw in an apology here to anyone who used to be on NODAK way back

when; there was a rather outspoken champion of NACD who made me cringe everytime

I read his posts. He didn't speak for all of us)

>>>>Seeing the strengths and using those to work on the weaknesses. Never ever

stop researching, learning and learning some more....<<<<<<

Amen again. This was actually the philosophy of NACD then and of course good ABA

today. Play to the strengths and use them to ameliorate the weaknesses!

And more great stuff below. I have to go back and read some old posts to learn

more about your teaching career and your child. I was off the list for some

time. Thank you for point of view and great message.

Sherry

>>>>>>Towards the end of my teaching profession, as a favor to a ST, I agreed to

work with a family on the weekends whose child was a toddler with sudden onset

autism. Again, this is before the prevalence of autism seen today- mid 1990s I

think. This family took a 2nd mortgage out to pay for me & ST to be trained in

Lovaas by flying a person from UCLA to do the intensive training. With all my

experiences up to that point, if someone had told me that I would see miracles

occur in that 3 day session I would have not believed. In fact, I doubt that I

would have accepted the position based on someone telling me what occurred

within the first hour!

That incidence ( & what followed for the next few years) coupled with my own 15

years of teaching experiences caused me to forever keep an open mind. And to

remember that what once was a little known or critizied therapy would perhaps

one day become prevalent in use.

It is sometimes difficult-at least for me- to remember that very little time has

actually gone by in regards people's understanding of many disorders.

Especially autism. In so many ways, autism is in its infacy. The sad but good

news is that finally people are more aware and trying to find answers. That is

where the McCarthy types are important. They have the means, the edge to push

it out there & cause more research- more awareness.

That being said, I find it astonishing and infuriating that there are still so

many professionals that continue to have no clue or have the audacity to negate

what a parent tells them. It makes me feel like I am in a timewarp & back in

the 80s. It makes me so very weary.

Thanks for the interesting read. All of you are awesome!!!

Kris<<<<<<

[Guest guest]

Hi Kris.

Thanks for all the information. We have friends who have a dog. Their

regular vet said to put him down, he was soooo sick. They heard about a vet

that practices Reiki and took him and he's been back at chasing tennis balls

for five months. His one treatment lasted that long.

I'm just trying to help Tony integrate the various parts of himself and an

open for anything - or at least anything that won't hurt him and cost me too

much. I do believe we can heal each other, the trick is always finding the

match.

So, we live in Madison, Wisconsin. I know there are lots of Reiki

practitioners here, I would like someone reliable.

Thanks,

Lori

_____

From: [mailto: ] On Behalf

Of kaprisock

Sent: Tuesday, September 22, 2009 11:39 PM

To:

Subject: Re: Don't rock the boat, don't tip the boat over

Hi Lori,

What state do you live in? I will pull my files & post info for you &

hopefully some links for your specific state.

I am a Usui Ryoho Reiki practitioner and know from personal experience that

Reiki can have an extremely profound effect. Reiki has been around for a

very long time & is practiced worldwide. It is currently offered in many

mainstream prominent allopathic hospitals AND universities as well. There is

ongoing research being conducted worldwide-including the National Institute

for Health in the US. Reiki practitioners may be a nurse, a priest, a

chemist, a lawyer, a doctor, a teacher or a housewife. (Just pointing out a

few I know so you get the picture, lol)

A few things to know:

You do not have to believe in reiki for it to be effective

Reiki is NOT used in place of conventional medical procedures but as a

complement.

Reiki is not a religion

Reiki is difficult at best to explain; even moreso the effects.

Reiki is not invasive nor is it limiting

Reiki itself does not harm

Reiki can be done anywhere, anytime

Reiki works

Many reiki practitioners can come to you for either treatments or training

Only a RMT (reiki master teacher) can provide what is needed to be trained

in reiki

I always suggest that anyone seeking reiki treatments for their child, first

have a reiki session for themselves. This way one knows exactly what to

expect & how it feels and will alleviate any qualms.

I also always suggest that anyone seeking long term or ongoing reiki

treatments consider taking Reiki Level I classes. By doing so, one can then

provide Reiki treatments for self and others (albeit without charging fees).

This cuts out the cost of seeking treatment elsewhere and provides instant

access when needed. Despite what you may hear, Reiki Level I is sufficent,

however most people choose to go further in their training in order to

become either a practitioner or a teacher.

Amongst other things, Reiki works EXTREMELY well in producing a

calming/serene affect. I know of reiki practitioners/master teachers who

work with people with autism. Because reiki can also be done WITHOUT

physical contact, it is ideal for working with burn victims, autism or those

in such great pain that touch is intolerable.

Now for the confusing part. There are many many different schools of reiki;

offshoots of the original. Be wary of what you read in researching. Whether

you chose to seek Reiki sessions or a class,use personal criteria in making

the choice of who to use. IMHO-it should not be too expensive nor should it

entail lengthy commitments or any rigid dogmas/rules. The reiki practitioner

you chose should be open to providing 1:1 sessions or training, answer any

questions you have, have proof of certification and most importantly NEVER

EVER promise a medical outcome.

Again, reiki is a valid complementry alternative used worldwide. It is NOT

currently a recognized western MEDICAL practice; however it can be found

incorporated within many traditional medical practices worldwide. In other

words, never stop using traditional medical interventions or treatments.

Despite results from reiki, continue to use both allopathic & alternative

treatments-ideally as a team working hand in hand for the greatest good.

Just as leeches are again being used in conventional mediciene, acupunture

is as well. I foresee a time when many disciplines (of what is now

considered alternative or fringe practices) will be recognized & widely used

as well.

Let me know if this synopsis helped & the state you live in so I can

hopefully provide you further info/links specific to your location.

Unexpected joys to you.

Kris

PS: Lori, in all honesty & integrity I cannot tell you if reiki would help

your dear son with the verbal stim. I know for a fact that it will relax &

produce serenity. I also know for a fact that reiki can provide YOU relief

re sinus headache. Seperate from reiki, I am wondering if your dear son is

possibly suffering from sinus pressure/headache as well??? Reason I mention

this is that my child will do the same occasionally & " knaw " on his

thumbs-even when actively engaged in watching a DVD or during a video game.

Inevitably, a few days later signs of illness appear or conversely it will

stop as suddenly as it started with a weather change. It has only been

recently that I have noted this correlation.

> >

> > >

> > >

> > > ,

> > > If you can't discuss it all here then what is the point of the group?

I

> > > think we are all pretty good about all who forge their own way, trying

> new

> > > therapies, new meds, etc. I for one have been looking in to the biomed

> > > direction. Trying to work and get the money to start the processes.

Not

> to

> > > mention to catch us up from all the years I have not worked normal

job.

> > >

> > > Dr. Capone did tell me that he is not against anything if we as

parents

> > > think it will help. Many therapies help some children and then don't

> help

> > > others. We have to try, right? As for , even she says this same

> > thing.

> > > It doesn't work for everyone (just like chemo doesn't cure everyone).

> But

> > > you try the things you can, and keep trying. I for one never thought I

> > would

> > > put Jake on meds and yet here we are! Risperdal and Focalin. We

started

> > > about at the age your daughter is now. Will it work for her? No one

> knows.

> > > It could make huge improvements, or it could do nothing.

> > >

> > > We always have to be respectful of everyone's opinions. Just because

one

> > > person likes or dislikes a therapy or a person or an organization

> doesn't

> > > mean we should not discuss it. We just have to be mindful of our words

> and

> > > not let emails take a tone that was not intended. Sometimes I also

think

> > > that many of us know each other so well that we forget that others

might

> > not

> > > see our humor or tone! ha!

> > >

> > > Six was a hard time for us at our house. Jake was more and more

> > frustrated,

> > > I was more and more tired and no one was all that happy. We finally

did

> go

> > > to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior

> clinic,

> > > worked hard on GF diet, and then finally started to see results. It

did

> > not

> > > happen over night but little baby steps. so hang in there! lean on us

> when

> > > your life is crazy. We are all crazy here also!

> > > Holly

> > >

> > > Don't rock the boat, don't tip the boat over

> > >

> > > Hi all,

> > > Well, I do not want to get into the whole issues of the diets etc, all

> the

> > > baggage that goes with it. I am sorry if anyone felt that way. It was

> not

> > my

> > > intention!!!

> > > I agree, our kids HAVE to communicate, in some way. It is SO hard to

not

> > > know what they want. has no words, signs, PECS, pointing,

device

> > etc.

> > > I do tend to think gives people false hope. And I do think some

> > things

> > > work for others, and not for another group. I just was basically

> curious,

> > > and should have phrased that better. I am just so lost, and angry that

I

> > > cannot get into Angie's world. We try so much, and there never seems

to

> be

> > > progres. She is 6 and has only said 1 word, " Da-da " I wish we lived

> closer

> > > to Capone, we're in CA, and might have to make the trip. We saw him

here

> > in

> > > Sacramento at the convention, he had said 2/3 of his patients have no

> > > language. So that makes me wonder if the DS plays into it differently.

I

> > > agree, we are the pioneers!

> > > Sorry if I offended anyone!

> > >

> > >

> > >

[Guest guest]

WOW. You're an amazing mom! SI does make a diff doesn't it!

Ayres is who trained me & a few others.

Do not know what NODAK is though...

It literally broke my heart to leave the center & took several years for me to

get past that empty arms feeling. But at the time I was afraid that I would not

have anything left for DJ. Or not enough for the kiddos. I was very involved

but had the luxery of going home to a bubble bath, a book or a cry, etc. My

biological kids were young adults when I married DJ's dad..my " baby " was a

senior in college- so it had been over 20 years since I had a 2 year old.

Little did I realize how much that meant-it has been a quite a journey. From my

1st shopping trip where I just stared at diapers & went home without any to my

now days with a 14 year old who I have no clue how to teach hinney wiping...

I am a golden oldie & have no qualms asking for ya'lls opinion or help cause

things have both changed & stayed the same. My teaching was for ages birth to

5. So I am no expert. Poor DJ. Once he turned 5 we muddled along.

And survived.

Unexpected joys to all.

Kris

>

> Kris,

> >>>>>This thread made me remember:

> When SI was virtually unknown. I recall paying to go out of town to receive

training. On my own dime & time. Not a single therapist or doctor had ever

heard of it and it STILL was not in widespread use in 1997 when I left

teaching.<<<<<

>

> You are a fascinating topic yourself. A professional teacher who went above

and beyond who also has a dual dx kid and knows how to do Reiki?!

> But this SI issue is close to my heart. We started in NACD when she was

2. That would have been 1991. We were given a huge program to address sensory

needs...every sense including proprioceptive and vestibular. She had had a small

taste of OT before that where they worked on pincer grasp etc. traditional

stuff.

>

> But this made all the difference. We didn't have her in school and didn't do

regular therapy during this period so I don't really know what was happening for

professionals then. It's great to hear your input. It wasn't later (like2000)

till I realized SI was the " new big thing " for Autism and DD. Sheesh....Jean

Ayres wrote the definitive book in 1970 and was dead by 1989. And Carl Delacato

published " The Ultimate Stranger " ...an extremely sobering look at sensory

problems in Autistic kids....in 1965! How fantastic that you actually pursued

this on your own and your students were able to benefit so early on. By the time

we had OTs coming to the house after J got medicaid...they were amazed at the

wild sensory playground we had made of our living room and so shocked that

anyone as dumb as a parent actually knew of it at all.

>

> >>>>>>We made equiptment or adapted items specifically for each child. I will

never forget the time that I needed a chair that would enable a child to be part

of sand box or pool time or music therapy. <<<<<<<

>

> This was something NACD provided also....they had plans drawn up to build

needed equipment for practically nothing...things you could find in catalogs

(maybe) for $1000 we made for $20. And their programs too were absolutely

individualized to suit each child. This was back in the day (creak, groan) when

they were just a grassroots organization. They're so big now and alot more

expensive. Still their techniques and info are out there now and parents can

learn from each other if they want to.

>

> (I must throw in an apology here to anyone who used to be on NODAK way back

when; there was a rather outspoken champion of NACD who made me cringe everytime

I read his posts. He didn't speak for all of us)

>

> >>>>Seeing the strengths and using those to work on the weaknesses. Never ever

stop researching, learning and learning some more....<<<<<<

>

> Amen again. This was actually the philosophy of NACD then and of course good

ABA today. Play to the strengths and use them to ameliorate the weaknesses!

>

> And more great stuff below. I have to go back and read some old posts to learn

more about your teaching career and your child. I was off the list for some

time. Thank you for point of view and great message.

>

> Sherry

>

> >>>>>>Towards the end of my teaching profession, as a favor to a ST, I agreed

to work with a family on the weekends whose child was a toddler with sudden

onset autism. Again, this is before the prevalence of autism seen today- mid

1990s I think. This family took a 2nd mortgage out to pay for me & ST to be

trained in Lovaas by flying a person from UCLA to do the intensive training.

With all my experiences up to that point, if someone had told me that I would

see miracles occur in that 3 day session I would have not believed. In fact, I

doubt that I would have accepted the position based on someone telling me what

occurred within the first hour!

>

> That incidence ( & what followed for the next few years) coupled with my own 15

years of teaching experiences caused me to forever keep an open mind. And to

remember that what once was a little known or critizied therapy would perhaps

one day become prevalent in use.

>

> It is sometimes difficult-at least for me- to remember that very little time

has actually gone by in regards people's understanding of many disorders.

Especially autism. In so many ways, autism is in its infacy. The sad but good

news is that finally people are more aware and trying to find answers. That is

where the McCarthy types are important. They have the means, the edge to push

it out there & cause more research- more awareness.

>

> That being said, I find it astonishing and infuriating that there are still so

many professionals that continue to have no clue or have the audacity to negate

what a parent tells them. It makes me feel like I am in a timewarp & back in

the 80s. It makes me so very weary.

>

> Thanks for the interesting read. All of you are awesome!!!

>

> Kris<<<<<<

>

>

>

>

>

>

>

>

>

[Guest guest]

Lori-

. You made my heart smile, thank you! Yes, reiki is indeed amazing isn't

it?! I am glad you knew about the animal+reiki connection as I purposefully

left it out.

I will look for sources for you-it may be tommorrow before I can do so. Not

enough sleep so probably can't do my usual late nighter.

You & hubby consider having a session also. It will help you on this journey

with your child:) Many times sessions are offered free at reiki shares or

health fairs (or for nominal cost). It is because of a health fair that I

learned of & experienced reiki. A long & amazing story but what happened to me

erased the skeptic in me- at least about reiki.

I believe the dog you mentioned will now be fine for all days.

Will follow up soon, I promise!

Unexpected joys to you all,

Kris

> > >

> > > >

> > > >

> > > > ,

> > > > If you can't discuss it all here then what is the point of the group?

> I

> > > > think we are all pretty good about all who forge their own way, trying

> > new

> > > > therapies, new meds, etc. I for one have been looking in to the biomed

> > > > direction. Trying to work and get the money to start the processes.

> Not

> > to

> > > > mention to catch us up from all the years I have not worked normal

> job.

> > > >

> > > > Dr. Capone did tell me that he is not against anything if we as

> parents

> > > > think it will help. Many therapies help some children and then don't

> > help

> > > > others. We have to try, right? As for , even she says this same

> > > thing.

> > > > It doesn't work for everyone (just like chemo doesn't cure everyone).

> > But

> > > > you try the things you can, and keep trying. I for one never thought I

> > > would

> > > > put Jake on meds and yet here we are! Risperdal and Focalin. We

> started

> > > > about at the age your daughter is now. Will it work for her? No one

> > knows.

> > > > It could make huge improvements, or it could do nothing.

> > > >

> > > > We always have to be respectful of everyone's opinions. Just because

> one

> > > > person likes or dislikes a therapy or a person or an organization

> > doesn't

> > > > mean we should not discuss it. We just have to be mindful of our words

> > and

> > > > not let emails take a tone that was not intended. Sometimes I also

> think

> > > > that many of us know each other so well that we forget that others

> might

> > > not

> > > > see our humor or tone! ha!

> > > >

> > > > Six was a hard time for us at our house. Jake was more and more

> > > frustrated,

> > > > I was more and more tired and no one was all that happy. We finally

> did

> > go

> > > > to Dr. Capone, ask for meds, went to see Dr. Grace at the behavior

> > clinic,

> > > > worked hard on GF diet, and then finally started to see results. It

> did

> > > not

> > > > happen over night but little baby steps. so hang in there! lean on us

> > when

> > > > your life is crazy. We are all crazy here also!

> > > > Holly

> > > >

> > > > Don't rock the boat, don't tip the boat over

> > > >

> > > > Hi all,

> > > > Well, I do not want to get into the whole issues of the diets etc, all

> > the

> > > > baggage that goes with it. I am sorry if anyone felt that way. It was

> > not

> > > my

> > > > intention!!!

> > > > I agree, our kids HAVE to communicate, in some way. It is SO hard to

> not

> > > > know what they want. has no words, signs, PECS, pointing,

> device

> > > etc.

> > > > I do tend to think gives people false hope. And I do think some

> > > things

> > > > work for others, and not for another group. I just was basically

> > curious,

> > > > and should have phrased that better. I am just so lost, and angry that

> I

> > > > cannot get into Angie's world. We try so much, and there never seems

> to

> > be

> > > > progres. She is 6 and has only said 1 word, " Da-da " I wish we lived

> > closer

> > > > to Capone, we're in CA, and might have to make the trip. We saw him

> here

> > > in

> > > > Sacramento at the convention, he had said 2/3 of his patients have no

> > > > language. So that makes me wonder if the DS plays into it differently.

> I

> > > > agree, we are the pioneers!

> > > > Sorry if I offended anyone!

> > > >

> > > >

> > > >