Re: The no clue look and dismissal from the pros..

August 19, 2002

In a message dated 8/19/02 1:49:24 PM Eastern Daylight Time, ASVINDC@...

writes:

> So..

> any thoughts for the only experts I trust completely?!?! That's you

> guys!

Ann,

Maddie does that body stretch thing too. Arms, legs, hands and toes out

in front, mouth open and a funky gutteral sound coming out....then she

giggles hysterically. She especially does it in the car seat....I tend to

think it has something to do with motion...definitely sensory related.

Maddie's does not seem to happen out of her control though....she does it

deliberately. If you are seriously worried about some type of seizure

disorder, mention it to your ped and see if you can get an eeg done (Maddie's

had one).

<<She suggested the Cranial Sacrial therapy for the teeth grinding, but

it didn't make much difference.>>

Maddie used to grind 24/7. We did TONS of oral massage on her cheeks,

inside and out, with our fingers and with oral massagers. You can buy some

at <A HREF= " http://www.new-vis.com/ " >mealtimes</A> It really worked for us.

<<SORRY SORRY THIS IS ANOTHER BOOK!

I'm determined to write some one liners or ya'll will skip my posts!!

Thanks!>>

LOLOL Don't be silly!!!! And, you're welcome....;-)

Donna

August 19, 2002

At 05:47 PM 8/19/2002 -0000, you wrote:

>I've asked a well known Developmental Nutritionist (who blew off

>Duncan's autism and slapped the old " Severe DS " on him in less than 2

>seconds after I gave her his history. She's well respected among

>other professionals and it gives me pause...she said not to bother

>with a GFCF diet - i.e he's not autistic just SMR...GRRRR!!!)

ann:

Please send me privately the name and contact information and credentials

of your " developmental nutritionist. "

Thank you,

Joan

(a registered dietitian, and author of the upcoming " Down Syndrome

Nutrition Handbook. " Can you tell we're gonig to have a few words?)

August 19, 2002

At 05:47 PM 8/19/2002 -0000, you wrote:

>I asked Dr. Capone and no ideas, but no concerned about it being

dangerous.

Ok, so it's not dangerous. Did he say what he thought it might be? Could it

be behavioral? A response to things? A moment to stop and try to reorganize

himself?

I think I need to know more about it to say anything concrete. But you want

to think about what typically is going on before and so on. Andy often

shudders when he's frustrated. But it could just be too much information in?

Sometimes visual strategies for information in and information out help

with things related to understanding yoru world. Meaning you give

photographical stories or clues as to what is happening.

think he's overwhelmed?

j

August 19, 2002

In a message dated 8/19/02 2:13:10 PM Eastern Daylight Time,

joan@... writes:

> (a registered dietitian, and author of the upcoming " Down Syndrome

> Nutrition Handbook. " Can you tell we're gonig to have a few words?)

>

Go Joan Go!!!

Ann, I hope you get some answers. You know your child best.

Diane

August 19, 2002

Hey Joan,

I want to get your book and have to tell you that I specifically

didn't want to post her name in case she's been enlightened.

Dorfman was high recommended to me by several sources and I was so

thrilled when I had a chance to go see her and take Duncan to her

home last January. It was very crushing to have her give me sympathy

in having a chid with " Severe Down sydrome " and gave me no credit for

the very fact that Duncan's history pointed to ASD along with his

sensory issues and that he has plenty of potential when it comes to

his wants or what motivates him....

She wrote me an Rx for a serum of nutrients and extra Vitamin C and

Piracetam (only because I asked for it).

Have you worked with her?

Also - I wanted to ask if the ICDL group of professionals have been

open and embracing of your incredible work and efforts? They could

well be enhanced with your expertise and knowledge.

Look forward to hearing from you,

Ann

> >I've asked a well known Developmental Nutritionist (who blew off

> >Duncan's autism and slapped the old " Severe DS " on him in less

than 2

> >seconds after I gave her his history. She's well respected among

> >other professionals and it gives me pause...she said not to bother

> >with a GFCF diet - i.e he's not autistic just SMR...GRRRR!!!)

>

> ann:

>

> Please send me privately the name and contact information and

credentials

> of your " developmental nutritionist. "

>

> Thank you,

> Joan

> (a registered dietitian, and author of the upcoming " Down Syndrome

> Nutrition Handbook. " Can you tell we're gonig to have a few words?)

August 19, 2002

Joan,

That's what is so vexing about these behaviors? Reactions? Output?

It can be when he's engaged in doing something and it's like he's

interrupted by it and other times he's trying to go to sleep and it's

like waves gripping him...other times he'll be chilling out in his

car seat and it can start...but I think it stems from being

overwhelmed with sensory. It just seems to fit a blanket area and

maybe his level of tiredness affects him being able to take in and

organize all the sensory elements?

Dr. Capone didn't seem to have an answer, but I didn't press him

about it.

I tried to ask Carol Kranowitz (? Have last name wrong I think...)

she wrote " The Out-of-Sync Child " and I attended a seminar of hers,

but the minute I mentioned Duncan had Down syndrome? I was dismissed

and it was thrown into the developmental delays pile associated with

Trisomy 21 (I was more than through with the attitude but tried to

glean some information to apply to my kid who is a kid, right? but

Carol's whole presentation was very geared towards typical children

with tendencies or behaviors considered challenging and not a kid

like mine. She had some excellent observations about today's kids

and how they grow up differently that the world we knew and less

gross motor play. I was disappointed in not getting more of an open

mind.

Sorry to be griping about professionals! There are tons of wonderful

ones and I worked with many at the Porter Graham Child

Development Center at UNC-Chapel Hill!

Regards,

Ann V.

> >I asked Dr. Capone and no ideas, but no concerned about it being

> dangerous.

>

> Ok, so it's not dangerous. Did he say what he thought it might be?

Could it

> be behavioral? A response to things? A moment to stop and try to

reorganize

> himself?

>

> I think I need to know more about it to say anything concrete. But

you want

> to think about what typically is going on before and so on. Andy

often

> shudders when he's frustrated. But it could just be too much

information in?

>

> Sometimes visual strategies for information in and information out

help

> with things related to understanding yoru world. Meaning you give

> photographical stories or clues as to what is happening.

>

> think he's overwhelmed?

>

> j

August 19, 2002

Thanks, Donna...

Duncan's sensory issues are related to all the major areas and motion

is certainly one. But right now? The stinker is over in the den

yelling his head off because I'm on the computer! THAT makes it a

fast response!

What were the results of Maddie's eeg? I've thought of getting one

done and would so love to have Bonnie do it, but Cincinnati

isn't next door and could go to KKI. Where do you guys live? I

recall you said Maddie saw Dr. Capone....

A

PS: Did I mention he throws things behind him and it drives his

mother to consider drinking or padding the entire interior of our

house?!?!

> In a message dated 8/19/02 1:49:24 PM Eastern Daylight Time,

ASVINDC@a...

> writes:

>

> > So..

> > any thoughts for the only experts I trust completely?!?! That's

you

> > guys!

>

> Ann,

> Maddie does that body stretch thing too. Arms, legs, hands

and toes out

> in front, mouth open and a funky gutteral sound coming out....then

she

> giggles hysterically. She especially does it in the car seat....I

tend to

> think it has something to do with motion...definitely sensory

related.

> Maddie's does not seem to happen out of her control though....she

does it

> deliberately. If you are seriously worried about some type of

seizure

> disorder, mention it to your ped and see if you can get an eeg done

(Maddie's

> had one).

>

> <<She suggested the Cranial Sacrial therapy for the teeth grinding,

but

> it didn't make much difference.>>

>

> Maddie used to grind 24/7. We did TONS of oral massage on her

cheeks,

> inside and out, with our fingers and with oral massagers. You

can buy some

> at <A HREF= " http://www.new-vis.com/ " >mealtimes</A> It really

worked for us.

>

> <<SORRY SORRY THIS IS ANOTHER BOOK!

> I'm determined to write some one liners or ya'll will skip my

posts!!

> Thanks!>>

>

> LOLOL Don't be silly!!!! And, you're welcome....;-)

> Donna

>

August 19, 2002

In a message dated 8/19/02 11:44:11 AM Pacific Daylight Time,

duffey48@... writes:

<< Ann,

Maddie does that body stretch thing too. Arms, legs, hands and toes

out

in front, mouth open and a funky gutteral sound coming out....then she

giggles hysterically. She especially does it in the car seat....I tend to

think it has something to do with motion...definitely sensory related.

Maddie's does not seem to happen out of her control though....she does it

deliberately. >>

Ann,

Seth is exactly the same way. I wondered if maybe the loss of some oxygen

had anything to do with it. Ya know, when they stretch out and kind of hold

their breath? Seth seems to like it for some reason. Maybe gets a little

dizzy like when he spins? Just thinking out loud and wondering. LOL It's

late. LOL

Gail :-)

Remember, half the people you know are below average.

August 19, 2002

Diane,

Thanks for the cheer to Joan! She's got a warrior in me on her side

that is completely respectful of those professionals and caring

others that are open to the concept they too can still learn new

things...often KEY things from parents. My mother was a special ed

teacher and fought for the rights of kids to be in inclusive

settings. She saw unreasonable, narrow-minded parents in her time,

but said her colleagues were more often the problem in their

inability to realize they didn't know it all or had seen it all

because they had a degree or had years of tunnel vision experience!

To Joan and others here - are you all familiar with Barbara Dunbar?

She's Ph.D. that is a colleage of Stanley Greenspan's and does a lot

of work with him and the association that holds the November

conference in McLean in November. My sister works for Barbara

in Atlanta at the Paideia School.

I want to make certain Barbara knows of Joan's incredible

contributions and dedication to her son and all of our children and

ALL of YOU!

I don't want to blast horns to people who already know the entire

brass section of this symphony, so wanted to check...

Thanks!

Ann

> In a message dated 8/19/02 2:13:10 PM Eastern Daylight Time,

> joan@d... writes:

>

> > (a registered dietitian, and author of the upcoming " Down Syndrome

> > Nutrition Handbook. " Can you tell we're gonig to have a few

words?)

> >

>

> Go Joan Go!!!

> Ann, I hope you get some answers. You know your child best.

> Diane

>

August 20, 2002

My does this too. She will be sitting then all of a sudden she streches

her arms out and shakes all over. She shakes her head while making noises. The

she will laugh and cut her eyes up in the corner. Sometimes she will smile with

a BIG smile and jsut look so cute I have to give her a BIG hug. I know she is

not in pain. I think she just gets a sensory over load or something and she has

to " shake " it off. You know??

Hannah does it too but not as often or severe.

Pam mom to identical twins Hannah (DS) and (DS-ASD) age 7

smilinggail@... wrote:In a message dated 8/19/02 11:44:11 AM Pacific

Daylight Time,

duffey48@... writes:

<< Ann,

Maddie does that body stretch thing too. Arms, legs, hands and toes

out

in front, mouth open and a funky gutteral sound coming out....then she

giggles hysterically. She especially does it in the car seat....I tend to

think it has something to do with motion...definitely sensory related.

Maddie's does not seem to happen out of her control though....she does it

deliberately. >>

Ann,

Seth is exactly the same way. I wondered if maybe the loss of some oxygen

had anything to do with it. Ya know, when they stretch out and kind of hold

their breath? Seth seems to like it for some reason. Maybe gets a little

dizzy like when he spins? Just thinking out loud and wondering. LOL It's

late. LOL

Gail :-)

Remember, half the people you know are below average.

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos of our

kids. Share favorite bookmarks, ideas, and other information by including them.

Don't forget, messages are a permanent record of the archives for our list.

--------------------------------------------

August 20, 2002

Pam, Gail and Donna -

Thanks for sharing. Duncan has days it's not a factor and others

where it's really dibilitating (to me it seems - he doesn't act in

distress but so so constant..). Last night he could'nt sleep from it

and was bouncing up and down the bed with his legs crossed. He'd

yawn and was so tired but it would grip him...finally I tried to help

with sensory imput and message. At times like wrestling with an

angel! He finally got relief as I held him and we rocked on the bed -

BIG rocks side to side while I sang " Baby Boats " and the little

darlin' feel into this exhausted and blessedly relaxed sleep.

It points to sensory processing overload? At least it seems to...

Pam? I gathered from one of your posts you are a single mom? I

wonder how many of us are here. Bless you and your darling twins and

their sibs. Hey Joan - can has there ever been a gathering of this

group maybe in conjunction with a DS conference? Wish I had a

fabulous retreat for us to gather with our kids and loved ones - lots

of meeting space, beautiful surroundings and activities for all (and

as many day spa treatments we could schedule in between times

together!)...if I win the lottery? It's all on me!

Ann

Duncan, 6/DS-PDD

In a message dated 8/19/02 11:44:11 AM

Pacific Daylight Time,

> duffey48@a... writes:

>

> << Ann,

> Maddie does that body stretch thing too. Arms, legs, hands and toes

> out

> in front, mouth open and a funky gutteral sound coming out....then

she

> giggles hysterically. She especially does it in the car seat....I

tend to

> think it has something to do with motion...definitely sensory

related.

> Maddie's does not seem to happen out of her control though....she

does it

> deliberately. >>

>

> Ann,

> Seth is exactly the same way. I wondered if maybe the loss of some

oxygen

> had anything to do with it. Ya know, when they stretch out and kind

of hold

> their breath? Seth seems to like it for some reason. Maybe gets a

little

> dizzy like when he spins? Just thinking out loud and wondering. LOL

It's

> late. LOL

> Gail :-)

> Remember, half the people you know are below average.

>

> --------------------------------------------------

> Checkout our homepage for information, bookmarks, and

photos of our kids. Share favorite bookmarks, ideas, and other

information by including them. Don't forget, messages are a permanent

record of the archives for our list. ds-

autism

> --------------------------------------------

>

August 20, 2002

Ann,

Yeah, I am single. There are a few of us on here that is.

You hurry up girl and win that lottery!!! I am so READY for a retreat and a

spa.

But more than anything else I would LOVE to meet all these wonderful mothers and

their special kids. Wouldn't that be terrific!!

Pam mom to identical twins Hannah (DS) and (DS-ASD) age 7

dlvmom1208 wrote:Pam, Gail and Donna -