Re: New Here - Need treat ideas for Sugar Free, GFCF

August 3, 2002

I have (or at least had) a book which had some ideas in for things like

that, but finding it now may be a problem. If you are specifically looking

for items which do NOT contain gluten, that could be a problem.

I think it might be a good idea to get him specifically tested for gluten

sensitivity before you exclude that, as it would make finding things for him

much easier.

Now, IF I can locate this book, I can have a go at scanning the specific

pages which have these things on them that may be useful, but my OCR

software is more than just a bit crappy. If it is not going to play ball, I

will just type the information out for you...

Ade!

New Here - Need treat ideas for Sugar Free, GFCF

Hi all,

I have a 5 yo that is being tested for high functioning Aspergers. I

stumbled across severe sugar intolerance with him when he was 3 yo.

Although he is much improved without sugar, corn, and milk products,

he is still presenting Aspergers.

After reading several posts from folks on another site about gluten

and wheat, I decided to try that this week.

BTW, Trevor is having a stellar day. I am so thrilled for him. Am

hoping this continues but am milking this day for all it is worth!

The issue. I need ideas to make treats for my son. I had treats I

could make but they include wheat.

He has zero tolerance for any form of sugar, honey, brown rice syrup,

ect. I do allow him to have fruit.

Help, please.

Thanks,

Bec

Trevor 5 yo waiting Aspergers test results

Spencer 16 months old suspected Mitochondrial Disorder

August 3, 2002

Boy, that is a tough one. Are you sure sugar is the culprit? Especially if fruit does not bother him. I know after taking my son off all the artificial colors, flavors and preservatives that come in so many kid treats these days, he has shown a remarkable improvement. For instance, he can eat homemade cookies, Breyers ice cream, and ghiradelli chocolate, all with no problem. But give him some Clifford Fruits Chews or a handful of M & Ms and watch out!!!!!!

As far as what treats to give him, try putting some fruit in a blender, and pouring the puree in to ice cube trays for popsicles. Or, go to the local smoothie store and get a fruit smoothie. We have a Jamba Juice near us that makes all natural, delicious smoothies. Or make your own fruit roll ups. You need a dehydrator, but they are yummy. My kids also like to snack on beef jerky and string cheese. One of my favorite tricks when they were little was to give them a bowl of still frozen peas and tell them it was candy. They wised up to that one, though, darn it.........

Good Luck and welcome

Debi (the one in San Diego)

New Here - Need treat ideas for Sugar Free, GFCF

Hi all,I have a 5 yo that is being tested for high functioning Aspergers. I stumbled across severe sugar intolerance with him when he was 3 yo. Although he is much improved without sugar, corn, and milk products, he is still presenting Aspergers.After reading several posts from folks on another site about gluten and wheat, I decided to try that this week.BTW, Trevor is having a stellar day. I am so thrilled for him. Am hoping this continues but am milking this day for all it is worth!The issue. I need ideas to make treats for my son. I had treats I could make but they include wheat.He has zero tolerance for any form of sugar, honey, brown rice syrup, ect. I do allow him to have fruit. Help, please.Thanks,BecTrevor 5 yo waiting Aspergers test resultsSpencer 16 months old suspected Mitochondrial Disorder

August 3, 2002

DUUUUHHHH!

Thanks for the reminder. I have some 100% fruit roll ups in the

cabinet from the health food store. No additives, colorings, or

anything.

Yes, I am sure sugar is the culprit. I made cookies with sugar and

on a different date brown rice syrup. Both times he had extreme

emotional outbursts. If I make the same cookies with Stevia, he

doesn't have the extreme reactions.

I have wondered about the fruit. He had a pear and a banana today

and had a great day, for him. I like the fruit smoothie thought.

Maybe, I will try a few fruit free days and see how he does. But I

need to finish my wheat experiement first.

Thanks,

Bec

> Boy, that is a tough one. Are you sure sugar is the culprit?

Especially if fruit does not bother him. I know after taking my son

off all the artificial colors, flavors and preservatives that come in

so many kid treats these days, he has shown a remarkable

improvement. For instance, he can eat homemade cookies, Breyers ice

cream, and ghiradelli chocolate, all with no problem. But give him

some Clifford Fruits Chews or a handful of M & Ms and watch out!!!!!!

>

> As far as what treats to give him, try putting some fruit in a

blender, and pouring the puree in to ice cube trays for popsicles.

Or, go to the local smoothie store and get a fruit smoothie. We have

a Jamba Juice near us that makes all natural, delicious smoothies.

Or make your own fruit roll ups. You need a dehydrator, but they are

yummy. My kids also like to snack on beef jerky and string cheese.

One of my favorite tricks when they were little was to give them a

bowl of still frozen peas and tell them it was candy. They wised up

to that one, though, darn it.........

>

> Good Luck and welcome

> Debi (the one in San Diego)

>

> New Here - Need treat ideas for Sugar

Free, GFCF

>

> Hi all,

>

> I have a 5 yo that is being tested for high functioning

Aspergers. I

> stumbled across severe sugar intolerance with him when he was 3

yo.

> Although he is much improved without sugar, corn, and milk

products,

> he is still presenting Aspergers.

>

> After reading several posts from folks on another site about

gluten

> and wheat, I decided to try that this week.

>

> BTW, Trevor is having a stellar day. I am so thrilled for him.

Am

> hoping this continues but am milking this day for all it is worth!

>

> The issue. I need ideas to make treats for my son. I had treats

I

> could make but they include wheat.

>

> He has zero tolerance for any form of sugar, honey, brown rice

syrup,

> ect. I do allow him to have fruit.

>

> Help, please.

>

> Thanks,

>

> Bec

>

> Trevor 5 yo waiting Aspergers test results

> Spencer 16 months old suspected Mitochondrial Disorder

>

August 3, 2002

Thanks, Ade!

Trevor has been tested for food allergies. However, these tests are

at best 70% accurate. They did both blood tests and elimination diet

on me. My blood test was 69% accurate. That test showed I didn't

react to either corn or soy. I get bad migraines from both but it

takes a build up of the foods in my system.

Trevors blood test showed he wasn't allergic to corn or milk. He

gets leg cramps from milk and has extreme emotional endless outbursts

when eating corn. Trevors test showed he is not sensitive to wheat.

I am going to drop the wheat for 2 - 3 weeks to see if there is an

improvement. After 3 weeks, I will let him eat wheat to see what he

does.

I have had numerous people, including professionals, observe Trevor

off and on sugar. There is no doubt he is much better off the sugar.

Thanks for hunting for the book.

Bec

> I have (or at least had) a book which had some ideas in for things

like

> that, but finding it now may be a problem. If you are specifically

looking

> for items which do NOT contain gluten, that could be a problem.

>

> I think it might be a good idea to get him specifically tested for

gluten

> sensitivity before you exclude that, as it would make finding

things for him

> much easier.

>

> Now, IF I can locate this book, I can have a go at scanning the

specific

> pages which have these things on them that may be useful, but my OCR

> software is more than just a bit crappy. If it is not going to

play ball, I

> will just type the information out for you...

>

> Ade!

> New Here - Need treat ideas for Sugar

Free, GFCF

>

> Hi all,

>

> I have a 5 yo that is being tested for high functioning Aspergers.

I

> stumbled across severe sugar intolerance with him when he was 3 yo.

> Although he is much improved without sugar, corn, and milk products,

> he is still presenting Aspergers.

>

> After reading several posts from folks on another site about gluten

> and wheat, I decided to try that this week.

>

> BTW, Trevor is having a stellar day. I am so thrilled for him. Am

> hoping this continues but am milking this day for all it is worth!

>

> The issue. I need ideas to make treats for my son. I had treats I

> could make but they include wheat.

>

> He has zero tolerance for any form of sugar, honey, brown rice

syrup,

> ect. I do allow him to have fruit.

>

> Help, please.

>

> Thanks,

>

> Bec

>

> Trevor 5 yo waiting Aspergers test results

> Spencer 16 months old suspected Mitochondrial Disorder

>

August 3, 2002

No problems

The tests I had in mind are a lot more accurate than those ones, which did

not look familiar to me. There is a very specific one for gluten, but it

does involve a trip to the hospital for the day...

I HAVE THE BOOK...

I am going to go through it now and see what I can do with this scanner. I

cannot promise much from it - as I wrote before, but one way or another, I

will reproduce the results somehow (but it might not be today)...

Ade!

New Here - Need treat ideas for Sugar

Free, GFCF

>

> Hi all,

>

> I have a 5 yo that is being tested for high functioning Aspergers.

I

> stumbled across severe sugar intolerance with him when he was 3 yo.

> Although he is much improved without sugar, corn, and milk products,

> he is still presenting Aspergers.

>

> After reading several posts from folks on another site about gluten

> and wheat, I decided to try that this week.

>

> BTW, Trevor is having a stellar day. I am so thrilled for him. Am

> hoping this continues but am milking this day for all it is worth!

>

> The issue. I need ideas to make treats for my son. I had treats I

> could make but they include wheat.

>

> He has zero tolerance for any form of sugar, honey, brown rice

syrup,

> ect. I do allow him to have fruit.

>

> Help, please.

>

> Thanks,

>

> Bec

>

> Trevor 5 yo waiting Aspergers test results

> Spencer 16 months old suspected Mitochondrial Disorder

>

August 3, 2002

I don't know if this will help. My mom goes on the

spurts where she tries to take me of sugar (it's

usually after I have eaten tons of sweets and drank

lots of sodas) and she makes things then. She takes a

cut and puts fruit in it and then pours sugar free

juice over it, puts aluminum foil over the cup, sticks

a stick in it and lets it freeze. Its really good

then. Like a fruity popscicle. Sometimes she just

freezes a big strawberry on a stick. tose are good

too. She uses a lot of bananas. She rolls the bananas

in lemon juice and then freezes them. Then she takes

them and sugar free juice and other fruits like mango

or strawberries or blueberries and swirls in all

around the blender. Then she adds ice and swirls it

again. It's really good. Sometimes she takes fruit

juice and puts it in the ice cube trays and freezes it

and then takes either club soda or seltzer water (one

does not have sugar in it)and plops the cubes in that.

It looks very cool. She also takes fruit and puts in

on skewers and then cuts off the pointy end (she is

afriad I will stab myself, but only because I did it

ONE time). She said she gets most of her ideas from

diabetic cookbooks.

Personally, I prefer rootbeer and iced cookies but

sometimes I don't get them. Ha

Hope that helps a little. If you want specific

recipies for things let me know and she can give them

to you.

Marty

--- Ade Rowley wrote:

> I have (or at least had) a book which had some ideas

> in for things like

> that, but finding it now may be a problem. If you

> are specifically looking

> for items which do NOT contain gluten, that could be

> a problem.

>

> I think it might be a good idea to get him

> specifically tested for gluten

> sensitivity before you exclude that, as it would

> make finding things for him

> much easier.

>

> Now, IF I can locate this book, I can have a go at

> scanning the specific

> pages which have these things on them that may be

> useful, but my OCR

> software is more than just a bit crappy. If it is

> not going to play ball, I

> will just type the information out for you...

>

> Ade!

> New Here - Need treat

> ideas for Sugar Free, GFCF

>

> Hi all,

>

> I have a 5 yo that is being tested for high

> functioning Aspergers. I

> stumbled across severe sugar intolerance with him

> when he was 3 yo.

> Although he is much improved without sugar, corn,

> and milk products,

> he is still presenting Aspergers.

>

> After reading several posts from folks on another

> site about gluten

> and wheat, I decided to try that this week.

>

> BTW, Trevor is having a stellar day. I am so

> thrilled for him. Am

> hoping this continues but am milking this day for

> all it is worth!

>

> The issue. I need ideas to make treats for my son.

> I had treats I

> could make but they include wheat.

>

> He has zero tolerance for any form of sugar, honey,

> brown rice syrup,

> ect. I do allow him to have fruit.

>

> Help, please.

>

> Thanks,

>

> Bec

>

> Trevor 5 yo waiting Aspergers test results

> Spencer 16 months old suspected Mitochondrial

> Disorder

>

August 3, 2002

Am looking forward to what you find.

Regarding the gluten testing. Are you referring to an upper GI

endoscopy where they see if he as celiac? I know he doesn't have

that problem because he doesn't have diarreah problems from wheat, I

do. I have not had an upper GI, rather it is assumed that is the

issue since my intestinal problems improve when I don't eat wheat.

My blood allergy test returned positive for wheat.

Thx,

Bec

> > I have (or at least had) a book which had some ideas in for things

> like

> > that, but finding it now may be a problem. If you are

specifically

> looking

> > for items which do NOT contain gluten, that could be a problem.

> >

> > I think it might be a good idea to get him specifically tested for

> gluten

> > sensitivity before you exclude that, as it would make finding

> things for him

> > much easier.

> >

> > Now, IF I can locate this book, I can have a go at scanning the

> specific

> > pages which have these things on them that may be useful, but my

OCR

> > software is more than just a bit crappy. If it is not going to

> play ball, I

> > will just type the information out for you...

> >

> > Ade!

> > New Here - Need treat ideas for Sugar

> Free, GFCF

> >

> > Hi all,

> >

> > I have a 5 yo that is being tested for high functioning Aspergers.

> I

> > stumbled across severe sugar intolerance with him when he was 3

yo.

> > Although he is much improved without sugar, corn, and milk

products,

> > he is still presenting Aspergers.

> >

> > After reading several posts from folks on another site about

gluten

> > and wheat, I decided to try that this week.

> >

> > BTW, Trevor is having a stellar day. I am so thrilled for him.

Am

> > hoping this continues but am milking this day for all it is worth!

> >

> > The issue. I need ideas to make treats for my son. I had treats

I

> > could make but they include wheat.

> >

> > He has zero tolerance for any form of sugar, honey, brown rice

> syrup,

> > ect. I do allow him to have fruit.

> >

> > Help, please.

> >

> > Thanks,

> >

> > Bec

> >

> > Trevor 5 yo waiting Aspergers test results

> > Spencer 16 months old suspected Mitochondrial Disorder

> >

August 3, 2002

Marty,

Thanks for the great ideas. I have seen frozen bags of fruit at the

store that have little recipes for those fruit shakes. What a lucky

girl you are to have a Mom that makes you so many yummy things to

feed your sweet tooth! =) Sounds like she is very creative in

making things that are so cool!

Bec

> > I have (or at least had) a book which had some ideas

> > in for things like

> > that, but finding it now may be a problem. If you

> > are specifically looking

> > for items which do NOT contain gluten, that could be

> > a problem.

> >

> > I think it might be a good idea to get him

> > specifically tested for gluten

> > sensitivity before you exclude that, as it would

> > make finding things for him

> > much easier.

> >

> > Now, IF I can locate this book, I can have a go at

> > scanning the specific

> > pages which have these things on them that may be

> > useful, but my OCR

> > software is more than just a bit crappy. If it is

> > not going to play ball, I

> > will just type the information out for you...

> >

> > Ade!

> > New Here - Need treat

> > ideas for Sugar Free, GFCF

> >

> > Hi all,

> >

> > I have a 5 yo that is being tested for high

> > functioning Aspergers. I

> > stumbled across severe sugar intolerance with him

> > when he was 3 yo.

> > Although he is much improved without sugar, corn,

> > and milk products,

> > he is still presenting Aspergers.

> >

> > After reading several posts from folks on another

> > site about gluten

> > and wheat, I decided to try that this week.

> >

> > BTW, Trevor is having a stellar day. I am so

> > thrilled for him. Am

> > hoping this continues but am milking this day for

> > all it is worth!

> >

> > The issue. I need ideas to make treats for my son.

> > I had treats I

> > could make but they include wheat.

> >

> > He has zero tolerance for any form of sugar, honey,

> > brown rice syrup,

> > ect. I do allow him to have fruit.

> >

> > Help, please.

> >

> > Thanks,

> >

> > Bec

> >

> > Trevor 5 yo waiting Aspergers test results

> > Spencer 16 months old suspected Mitochondrial

> > Disorder

> >

August 3, 2002

That and some others. There are some very specific blood screening tests

which have an absolute accuracy, but they do ONLY reflect true allergies.

As you say, he does not have generalised bowel problems, so there is no

reason to suspect he has a sensitivity to gluten and this is the first place

it would show up. I doubt, in this case, gluten is his problem and a diet

which restricts it is both expensive and problematic unless this diagnosis

has been confirmed.

I do have all the details of the foods I told you about. I will e-mail them

directly to you and if you want to then share them with the group, by all

means do. My field of medicine is not in paediatrics, but from my time

doing clinical rotations, I remember seeing a lot of kids improve when they

stick to this. This is not a diet as such, it is really just a list of

foods that you can pick from and organise as you wish. I do warn you,

though, this IS rather bland and not that interesting.

Hope this helps...

Ade!

New Here - Need treat ideas for Sugar

> Free, GFCF

> >

> > Hi all,

> >

> > I have a 5 yo that is being tested for high functioning Aspergers.

> I

> > stumbled across severe sugar intolerance with him when he was 3

yo.

> > Although he is much improved without sugar, corn, and milk

products,

> > he is still presenting Aspergers.

> >

> > After reading several posts from folks on another site about

gluten

> > and wheat, I decided to try that this week.

> >

> > BTW, Trevor is having a stellar day. I am so thrilled for him.

Am

> > hoping this continues but am milking this day for all it is worth!

> >

> > The issue. I need ideas to make treats for my son. I had treats

I

> > could make but they include wheat.

> >

> > He has zero tolerance for any form of sugar, honey, brown rice

> syrup,

> > ect. I do allow him to have fruit.

> >

> > Help, please.

> >

> > Thanks,

> >

> > Bec

> >

> > Trevor 5 yo waiting Aspergers test results

> > Spencer 16 months old suspected Mitochondrial Disorder

> >

August 3, 2002

Here's a couple I keep on hand. Hope they're what you're looking for.....

Chocolate Lace Cake

Ingredients 4 tablespoons margarine, softened

1/4 cup light raspberry preserves with NutraSweet® brand sweetener or

raspberry spreadable fruit

1 egg

7 1/4 teaspoons Equal® for RecipiesTM or 24 packets Equal® sweetener

or 1 cup Equal® SpoonfulTM

1/2 cup skim milk (or soy milk)

3 tablespoons Dutch process or European process cocoa

It is essential to use Dutch process or European process cocoa for this

recipe to succeed.

1 cup all-purpose flour

1 teaspoon baking powder

1/2 teaspoon baking soda

1/4 teaspoon salt

Chocolate Glaze

1/2 - 1 ounce unsweetened baking chocolate, optional to garnish

Fresh raspberries, as garnish

Directions

Beat margarine, preserves, egg, and Equal® in a medium bowl until

smooth. Mix milk and cocoa in a glass measuring cup until smooth.

Mix combined flour, baking powder, baking soda, and salt into

cake-margarine mixture atlernately with soy milk and cocoa, beginning and

ending with dry ingredients. Pour batter into greased and floured 8-inch

cake pan.

Bake in preheated 350 degree F oven until toothpick inserted in center

of cake comes out clean, about 20 minutes. Cool in pan on wire rack 5

minutes; remove from pan and cool completely.

Place cake on serving plate, spread with Chocolate Glaze. Refrigerate

until glaze has hardened, 15 to 20 minutes. Melt chocolate over low heat

in small saucepan, stirring frequently; drizzle over top of cake in

" lace " pattern. Refrigerate until chocolate has hardened, about 10

minutes.

Makes 8 servings. Serving size:

Yield:

Exchanges:

Nutrition: 1 slice

8

1 1/2 bread, 2 1/2 fat

212 Calories, 5g Protein, 25g Carbohydrate, 13g Fat

**********************

Easy-Freezy Sorbet

2 cups fresh blueberries 1/4 cup frozen pineapple-orange-banana juice

2 cups fresh raspberries concentrate or citrus beverage concentrate

1/2 cup water Sugar cones (optional)

1. Freeze berries by placing them in a single layer on a baking pan and

placing in the freezer. When frozen, put berries in a freezer container

or plastic freezer bag and seal. Keep containers or bags of berries in

freezer up to 12 months.

2. In a large bowl combine the frozen berries, water, and frozen

concentrate. Place half of the mixture in a food processor bowl. Cover

and process until almost smooth. Repeat with remaining mixture. Serve

immediately. (Or, transfer mixture to a baking dish. Cover; freeze about

4 hours or until firm.) Use within 2 days. Scoop frozen mixture into

cones, if desired. Makes 7, 1/2-cup servings.

Make-Ahead Tip: Freeze berries and store in freezer containers or bags

in the freezer up to 12 months. Prepare sorbet and transfer to a baking

dish. Cover and freeze up to 2 days.

Of course, there's also sugar-free Koolaid frozen in ice cube trays,

carrot sticks with a little oil free dressing to dip 'em in, and (my

fave as a kid) celery with either peanut butter or just a sprinkle of

salt on 'em. My daughter loved baked potato skins with a bit of butter

then baked in the oven and topped with artificial sour cream. Or lox

and neufchatel cheese (non-dairy) on bagel chips. And our son is a fan

of peanuts or mixed nuts (dry-roasted).

Annie, who loves ya annie@...

--

" There are no epidurals during a spiritual rebirth. " Larry, Dharma's father

August 3, 2002

She is pretty cool, but umm, my name is

McLonigan (everyone calls me Mouse, I think

because I don't talk)and I'm a boy,not a girl.

My mom said that she makes a lot of stuff with sugar

free yogurt too (I didn't know until I asked her and

now I think I'm going to be sick-LOL).

Mouse

--- rebecpeck wrote:

> Marty,

>

> Thanks for the great ideas. I have seen frozen bags

> of fruit at the

> store that have little recipes for those fruit

> shakes. What a lucky

> girl you are to have a Mom that makes you so many

> yummy things to

> feed your sweet tooth! =) Sounds like she is very

> creative in

> making things that are so cool!

>

> Bec

>

> > > I have (or at least had) a book which had some

> ideas

> > > in for things like

> > > that, but finding it now may be a problem. If

> you

> > > are specifically looking

> > > for items which do NOT contain gluten, that

> could be

> > > a problem.

> > >

> > > I think it might be a good idea to get him

> > > specifically tested for gluten

> > > sensitivity before you exclude that, as it would

> > > make finding things for him

> > > much easier.

> > >

> > > Now, IF I can locate this book, I can have a go

> at

> > > scanning the specific

> > > pages which have these things on them that may

> be

> > > useful, but my OCR

> > > software is more than just a bit crappy. If it

> is

> > > not going to play ball, I

> > > will just type the information out for you...

> > >

> > > Ade!

> > > New Here - Need

> treat

> > > ideas for Sugar Free, GFCF

> > >

> > > Hi all,

> > >

> > > I have a 5 yo that is being tested for high

> > > functioning Aspergers. I

> > > stumbled across severe sugar intolerance with

> him

> > > when he was 3 yo.

> > > Although he is much improved without sugar,

> corn,

> > > and milk products,

> > > he is still presenting Aspergers.

> > >

> > > After reading several posts from folks on

> another

> > > site about gluten

> > > and wheat, I decided to try that this week.

> > >

> > > BTW, Trevor is having a stellar day. I am so

> > > thrilled for him. Am

> > > hoping this continues but am milking this day

> for

> > > all it is worth!

> > >

> > > The issue. I need ideas to make treats for my

> son.

> > > I had treats I

> > > could make but they include wheat.

> > >

> > > He has zero tolerance for any form of sugar,

> honey,

> > > brown rice syrup,

> > > ect. I do allow him to have fruit.

> > >

> > > Help, please.

> > >

> > > Thanks,

> > >

> > > Bec

> > >

> > > Trevor 5 yo waiting Aspergers test results

> > > Spencer 16 months old suspected Mitochondrial

> > > Disorder

> > >

August 3, 2002

Nice to meet you, mouse...

I did not talk for many, many years, but I do now. I often wish I still did

not!

New Here - Need

> treat

> > > ideas for Sugar Free, GFCF

> > >

> > > Hi all,

> > >

> > > I have a 5 yo that is being tested for high

> > > functioning Aspergers. I

> > > stumbled across severe sugar intolerance with

> him

> > > when he was 3 yo.

> > > Although he is much improved without sugar,

> corn,

> > > and milk products,

> > > he is still presenting Aspergers.

> > >

> > > After reading several posts from folks on

> another

> > > site about gluten

> > > and wheat, I decided to try that this week.

> > >

> > > BTW, Trevor is having a stellar day. I am so

> > > thrilled for him. Am

> > > hoping this continues but am milking this day

> for

> > > all it is worth!

> > >

> > > The issue. I need ideas to make treats for my

> son.

> > > I had treats I

> > > could make but they include wheat.

> > >

> > > He has zero tolerance for any form of sugar,

> honey,

> > > brown rice syrup,

> > > ect. I do allow him to have fruit.

> > >

> > > Help, please.

> > >

> > > Thanks,

> > >

> > > Bec

> > >

> > > Trevor 5 yo waiting Aspergers test results

> > > Spencer 16 months old suspected Mitochondrial

> > > Disorder

> > >

August 4, 2002

Marty!!!! You are making me hungry!!!! Hmmmm, maybe I need to pull out that blender and make some homemade smoothies on this warm summer night!!

Thanks for the idea!

Debi (the one in San Diego)

New Here - Need treat> ideas for Sugar Free, GFCF> > > Hi all,> > I have a 5 yo that is being tested for high> functioning Aspergers. I> stumbled across severe sugar intolerance with him> when he was 3 yo.> Although he is much improved without sugar, corn,> and milk products,> he is still presenting Aspergers.> > After reading several posts from folks on another> site about gluten> and wheat, I decided to try that this week.> > BTW, Trevor is having a stellar day. I am so> thrilled for him. Am> hoping this continues but am milking this day for> all it is worth!> > The issue. I need ideas to make treats for my son. > I had treats I> could make but they include wheat.> > He has zero tolerance for any form of sugar, honey,> brown rice syrup,> ect. I do allow him to have fruit.> > Help, please.> > Thanks,> > Bec> > Trevor 5 yo waiting Aspergers test results> Spencer 16 months old suspected Mitochondrial> Disorder> > > >

August 4, 2002

Really? Are you autistic? How did you learn to talk?

Was it hard? Did people make fun of you? Do you talk

plain when you talk? Do you sign? Do you still sign

and talk? Was it hard to start talking to people or do

you talk to strangers even now? Did people make fun of

you when you didn't talk? Sorry. They just told me to

stop asking questions. Sorry. Hope you will answer the

ones I asked though.

Mouse

--- Ade Rowley wrote:

> Nice to meet you, mouse...

>

> I did not talk for many, many years, but I do now.

> I often wish I still did

> not!

> New Here - Need

> > treat

> > > > ideas for Sugar Free, GFCF

> > > >

> > > > Hi all,

> > > >

> > > > I have a 5 yo that is being tested for high

> > > > functioning Aspergers. I

> > > > stumbled across severe sugar intolerance with

> > him

> > > > when he was 3 yo.

> > > > Although he is much improved without sugar,

> > corn,

> > > > and milk products,

> > > > he is still presenting Aspergers.

> > > >

> > > > After reading several posts from folks on

> > another

> > > > site about gluten

> > > > and wheat, I decided to try that this week.

> > > >

> > > > BTW, Trevor is having a stellar day. I am so

> > > > thrilled for him. Am

> > > > hoping this continues but am milking this day

> > for

> > > > all it is worth!

> > > >

> > > > The issue. I need ideas to make treats for my

> > son.

> > > > I had treats I

> > > > could make but they include wheat.

> > > >

> > > > He has zero tolerance for any form of sugar,

> > honey,

> > > > brown rice syrup,

> > > > ect. I do allow him to have fruit.

> > > >

> > > > Help, please.

> > > >

> > > > Thanks,

> > > >

> > > > Bec

> > > >

> > > > Trevor 5 yo waiting Aspergers test results

> > > > Spencer 16 months old suspected Mitochondrial

> > > > Disorder

> > > >

August 4, 2002

You ask as many questions as you please, Mouse. It really does not bother

me, although it may be a good idea to send them directly to my e-mail

address, as the other members in this group may not wish to read my life

story.

So, here are your answers...

Yes, I really did not talk for many years and yes, I am autistic.

I did not speak a word until I was seven years old and was diagnosed as

being autistic at the age of four.

Did people make fun of me? Yes, all of the time. Due to the fact that I

would sit in absolute silence, I was known as " coma " at school, although

much later in life I developed the very rare and lethal condition of Brittle

Asthma (don't worry, that is not something associated with being autistic)

and from that day forth I have been called " wheezy " by those that know me

well.

While it is true that I was the butt of most jokes around my primary school

(you may call this " elementary school " ), I was also something of an enigma

for my teachers, as I would sit and do nothing that I was asked and for a

long time they argued amongst themselves that I may actually be deaf and

mute. This was proved wrong at the time I was diagnosed, but still they

believed themselves to correct, as I did not respond to their requests for

me to produce the work they requested.

Much later on, the same doctor that diagnosed my condition said that I was

not typically autistic, but that I had, in fact, the rarely seen " Savant

Syndrome, " as certain skills were emerging which seemed almost superimposed

upon my lack of ability in other areas.

Things began to change somewhat when I did start to speak, as I would not do

this consistently, but seemingly only when I felt like it. I have always

possessed a phenomenal memory and the words I uttered were what they now

term as " echolalic " in the fact that they were words directly taken from

words I knew that had been spoken to me many years before. At around this

time, they tried very hard to grade me for IQ (as this was impossible

before). That same school also wanted to transfer me to another school

up-country from here, which my parents had to go and see. They absolutely

refused to agree to this transfer, as they saw that the kids there were not

simply autistic, but severely mentally and physically handicapped and I

believe now they were afraid that I would never leave the silence that

surrounded me at that time.

As I began to start talking, people did make fun of me a great deal,

although this really did not make the slightest bit of difference to me, as,

for a start, I lived in my own world most of the time and had no concept of

people outside of that. I also discovered at this point in my life that

most people who are not autistic and can speak perfectly well, say nothing

that I was or am interested in and more to the point, most people make no

sense whatsoever when they talk.

Do I talk plain? That is a difficult question and I would have to answer it

equivocally with yes and no. I have always spoken true to my own feelings

and I think you may call this plain speaking. At the same time, I can get

rather complex with my speech, but that really was the consequence of the

fact that I became a physician and had to develop this (I am no longer a

physician).

I did not sign and talk at all. Before I began to talk, my favourite thing

was my piano and I would play with (so I am told) remarkable skill and the

one thing that I was able to do was excel in this area. I did not think of

myself as being silent because of my piano, but when I began to speak, I

stopped playing the piano and have not played it since (hence the reason I

wrote that I wish I still did not talk).

Do I still sign and talk? No, as I wrote before, I never did this in the

first place.

Was it hard to learn to talk? Yes, in a way, it was. I knew a lot of words

when I did begin talking, but my intonation was incorrect and pronouns were

usually mixed up.

Do I talk to strangers now? Well, as I wrote before, being a physician I

had to, although my work in medicine was confined to the treatment of cancer

(blood cancers) and then only in children. I was considered one of the most

arrogant physicians, as I would talk to the child concerned and NOT the

parents that brought him/her to see me (I saw little point in asking the

parents about a condition their child has). I have been fortunate, in many

ways, that my parents protected me from much of the outside world and so

those I talk to are those I know very well. People who have become good

friends know about my handicap in this respect and understand that they may

not always get much conversation from me. Strangers, in the sense of

passing strangers, such as people in the street or those serving me in a

shop do not get any conversation from me at all. This is not because I

ignore them, but because I do not even know they are there.

Did people make fun of me when I started to talk? God, yes, all of the

time. I knew very few words of my own at that time and so spoke in phrases

and sentences that I had gathered from situations. For example, when I was

three years old, my parents took me and my sister (who is two and a half

years my senior) to a hotel in London. All through the weekend, I had a

fluffy toy dog that I kept on throwing out of the window and my mother would

have to go down to the street to fetch it back. After doing this several

times, she said " Don't throw the dog off the balcony! " in something of a

harsh voice. When I began to talk, this is what I would say whenever I was

corrected by a teacher or another student. To start with, nobody knew why I

said this, or what it was supposed to mean, so most kids would go around

asking me not to throw the dog off the balcony. It was only after my mother

explained where this came from that the teachers realised I said it when I

knew I had done something wrong, or was about to do something wrong and of

course, every time I was scolded for doing something wrong.

As time went by, I did develop more speech and used my own words, but they

started out by being rather short and diluted. For example, if I had been

out for a walk to the supermarket with my mother, when asked what I had done

that day, I would reply, " walk shop home! " I also picked up rather quickly

on swear words and used them profusely whenever I could. This went down, as

they say, " like a lead balloon! "

I think this must have bored other people here silly (sorry folks)...I hope

this answers your questions, Mouse.

Ade!

New Here - Need

> > treat

> > > > ideas for Sugar Free, GFCF

> > > >

> > > > Hi all,

> > > >

> > > > I have a 5 yo that is being tested for high

> > > > functioning Aspergers. I

> > > > stumbled across severe sugar intolerance with

> > him

> > > > when he was 3 yo.

> > > > Although he is much improved without sugar,

> > corn,

> > > > and milk products,

> > > > he is still presenting Aspergers.

> > > >

> > > > After reading several posts from folks on

> > another

> > > > site about gluten

> > > > and wheat, I decided to try that this week.

> > > >

> > > > BTW, Trevor is having a stellar day. I am so

> > > > thrilled for him. Am

> > > > hoping this continues but am milking this day

> > for

> > > > all it is worth!

> > > >

> > > > The issue. I need ideas to make treats for my

> > son.

> > > > I had treats I

> > > > could make but they include wheat.

> > > >

> > > > He has zero tolerance for any form of sugar,

> > honey,

> > > > brown rice syrup,

> > > > ect. I do allow him to have fruit.

> > > >

> > > > Help, please.

> > > >

> > > > Thanks,

> > > >

> > > > Bec

> > > >

> > > > Trevor 5 yo waiting Aspergers test results

> > > > Spencer 16 months old suspected Mitochondrial

> > > > Disorder

> > > >

August 4, 2002

Wow. You are amazing! I loved your story. I read it

several times. I could never be a doctor and I don't

have any savant skills and I don't talk. I can write

ok but that's about it. You're amazing!!!!!!!!!

Thank you for answering my questions!

Mouse

--- Ade Rowley wrote:

> You ask as many questions as you please, Mouse. It

> really does not bother

> me, although it may be a good idea to send them

> directly to my e-mail

> address, as the other members in this group may not

> wish to read my life

> story.

>

> So, here are your answers...

>

> Yes, I really did not talk for many years and yes, I

> am autistic.

>

> I did not speak a word until I was seven years old

> and was diagnosed as

> being autistic at the age of four.

>

> Did people make fun of me? Yes, all of the time.

> Due to the fact that I

> would sit in absolute silence, I was known as " coma "

> at school, although

> much later in life I developed the very rare and

> lethal condition of Brittle

> Asthma (don't worry, that is not something

> associated with being autistic)

> and from that day forth I have been called " wheezy "

> by those that know me

> well.

>

> While it is true that I was the butt of most jokes

> around my primary school

> (you may call this " elementary school " ), I was also

> something of an enigma

> for my teachers, as I would sit and do nothing that

> I was asked and for a

> long time they argued amongst themselves that I may

> actually be deaf and

> mute. This was proved wrong at the time I was

> diagnosed, but still they

> believed themselves to correct, as I did not respond

> to their requests for

> me to produce the work they requested.

>

> Much later on, the same doctor that diagnosed my

> condition said that I was

> not typically autistic, but that I had, in fact, the

> rarely seen " Savant

> Syndrome, " as certain skills were emerging which

> seemed almost superimposed

> upon my lack of ability in other areas.

>

> Things began to change somewhat when I did start to

> speak, as I would not do

> this consistently, but seemingly only when I felt

> like it. I have always

> possessed a phenomenal memory and the words I

> uttered were what they now

> term as " echolalic " in the fact that they were words

> directly taken from

> words I knew that had been spoken to me many years

> before. At around this

> time, they tried very hard to grade me for IQ (as

> this was impossible

> before). That same school also wanted to transfer

> me to another school

> up-country from here, which my parents had to go and

> see. They absolutely

> refused to agree to this transfer, as they saw that

> the kids there were not

> simply autistic, but severely mentally and

> physically handicapped and I

> believe now they were afraid that I would never

> leave the silence that

> surrounded me at that time.

>

> As I began to start talking, people did make fun of

> me a great deal,

> although this really did not make the slightest bit

> of difference to me, as,

> for a start, I lived in my own world most of the

> time and had no concept of

> people outside of that. I also discovered at this

> point in my life that

> most people who are not autistic and can speak

> perfectly well, say nothing

> that I was or am interested in and more to the

> point, most people make no

> sense whatsoever when they talk.

>

> Do I talk plain? That is a difficult question and I

> would have to answer it

> equivocally with yes and no. I have always spoken

> true to my own feelings

> and I think you may call this plain speaking. At

> the same time, I can get

> rather complex with my speech, but that really was

> the consequence of the

> fact that I became a physician and had to develop

> this (I am no longer a

> physician).

>

> I did not sign and talk at all. Before I began to

> talk, my favourite thing

> was my piano and I would play with (so I am told)

> remarkable skill and the

> one thing that I was able to do was excel in this

> area. I did not think of

> myself as being silent because of my piano, but when

> I began to speak, I

> stopped playing the piano and have not played it

> since (hence the reason I

> wrote that I wish I still did not talk).

>

> Do I still sign and talk? No, as I wrote before, I

> never did this in the

> first place.

>

> Was it hard to learn to talk? Yes, in a way, it

> was. I knew a lot of words

> when I did begin talking, but my intonation was

> incorrect and pronouns were

> usually mixed up.

>

> Do I talk to strangers now? Well, as I wrote

> before, being a physician I

> had to, although my work in medicine was confined to

> the treatment of cancer

> (blood cancers) and then only in children. I was

> considered one of the most

> arrogant physicians, as I would talk to the child

> concerned and NOT the

> parents that brought him/her to see me (I saw little

> point in asking the

> parents about a condition their child has). I have

> been fortunate, in many

> ways, that my parents protected me from much of the

> outside world and so

> those I talk to are those I know very well. People

> who have become good

> friends know about my handicap in this respect and

> understand that they may

> not always get much conversation from me.

> Strangers, in the sense of

> passing strangers, such as people in the street or

> those serving me in a

> shop do not get any conversation from me at all.

> This is not because I

> ignore them, but because I do not even know they are

> there.

>

> Did people make fun of me when I started to talk?

> God, yes, all of the

> time. I knew very few words of my own at that time

> and so spoke in phrases

> and sentences that I had gathered from situations.

> For example, when I was

> three years old, my parents took me and my sister

> (who is two and a half

> years my senior) to a hotel in London. All through

> the weekend, I had a

> fluffy toy dog that I kept on throwing out of the

> window and my mother would

> have to go down to the street to fetch it back.

> After doing this several

> times, she said " Don't throw the dog off the

> balcony! " in something of a

> harsh voice. When I began to talk, this is what I

> would say whenever I was

> corrected by a teacher or another student. To start

> with, nobody knew why I

> said this, or what it was supposed to mean, so most

> kids would go around

> asking me not to throw the dog off the balcony. It

> was only after my mother

> explained where this came from that the teachers

> realised I said it when I

> knew I had done something wrong, or was about to do

> something wrong and of

> course, every time I was scolded for doing something

> wrong.

>

> As time went by, I did develop more speech and used

> my own words, but they

> started out by being rather short and diluted. For

> example, if I had been

> out for a walk to the supermarket with my mother,

> when asked what I had done

> that day, I would reply, " walk shop home! " I also

> picked up rather quickly

> on swear words and used them profusely whenever I

> could. This went down, as

> they say, " like a lead balloon! "

>

> I think this must have bored other people here silly

> (sorry folks)...I hope

> this answers your questions, Mouse.

>

> Ade!

> New Here - Need

> > > treat

> > > > > ideas for Sugar Free, GFCF

> > > > >

> > > > > Hi all,

> > > > >

> > > > > I have a 5 yo that is being tested for high

> > > > > functioning Aspergers. I

> > > > > stumbled across severe sugar intolerance

> with

> > > him

> > > > > when he was 3 yo.

> > > > > Although he is much improved without sugar,

> > > corn,

> > > > > and milk products,

> > > > > he is still presenting Aspergers.

> > > > >

> > > > > After reading several posts from folks on

> > > another

> > > > > site about gluten

> > > > > and wheat, I decided to try that this week.

> > > > >

> > > > > BTW, Trevor is having a stellar day. I am

> so

> > > > > thrilled for him. Am

> > > > > hoping this continues but am milking this

> day

> > > for

> > > > > all it is worth!

> > > > >

> > > > > The issue. I need ideas to make treats for

> my

> > > son.

> > > > > I had treats I

> > > > > could make but they include wheat.

> > > > >

> > > > > He has zero tolerance for any form of sugar,

> > > honey,

> > > > > brown rice syrup,

> > > > > ect. I do allow him to have fruit.

> > > > >

> > > > > Help, please.

> > > > >

> > > > > Thanks,

> > > > >

> > > > > Bec

> > > > >

> > > > > Trevor 5 yo waiting Aspergers test results

> > > > > Spencer 16 months old suspected

> Mitochondrial

> > > > > Disorder

> > > > >

August 4, 2002

You are more than welcome, Mouse.

If you want to take just one piece of advice from me, then NEVER tell

yourself that there is anything that you could never be. Everybody said I

could never be anything at all. The headmaster at my primary school wanted

to send me to a school which he evidently felt I belonged in, which was full

of kids who had very, very severe mental and physical impairments, to the

degree that they had very pressing medical needs which had to be dealt with

my staff trained to expert level in several medical procedures. Had it not

been for my parents belief in me, that I was in there somewhere, I would

never have done anything in my life.

I am no longer a doctor now, as I retired from practice when my partner

died. I do work now, but not in medicine at all.

I can see you have more skills than you think you do. I think, if you could

only get a glimpse of some of the so called " brilliant minds " I have had to

endure, you would see quite clearly that you are capable of many things.

Just don't give up and most importantly, never see yourself as unable to

achieve anything you want in life. I would rather sit in silence than hear

what most " normal " people have to say.

Very recently, I asked my mother if, had she known what she does now, what

she would have changed about me, if she would have rather had a child that

was not autistic. She thought about this for a while before she said, " I

would have changed nothing at all about you. You were fine the way you were

and if you had stayed that way, then you would still be my special son... "

Now, that caused me to be silent for some time after...

Take care, mouse and never hesitate to ask...

Ade!

New Here - Need

> > > treat

> > > > > ideas for Sugar Free, GFCF

> > > > >

> > > > > Hi all,

> > > > >

> > > > > I have a 5 yo that is being tested for high

> > > > > functioning Aspergers. I

> > > > > stumbled across severe sugar intolerance

> with

> > > him

> > > > > when he was 3 yo.

> > > > > Although he is much improved without sugar,

> > > corn,

> > > > > and milk products,

> > > > > he is still presenting Aspergers.

> > > > >

> > > > > After reading several posts from folks on

> > > another

> > > > > site about gluten

> > > > > and wheat, I decided to try that this week.

> > > > >

> > > > > BTW, Trevor is having a stellar day. I am

> so

> > > > > thrilled for him. Am

> > > > > hoping this continues but am milking this

> day

> > > for

> > > > > all it is worth!

> > > > >

> > > > > The issue. I need ideas to make treats for

> my

> > > son.

> > > > > I had treats I

> > > > > could make but they include wheat.

> > > > >

> > > > > He has zero tolerance for any form of sugar,

> > > honey,

> > > > > brown rice syrup,

> > > > > ect. I do allow him to have fruit.

> > > > >

> > > > > Help, please.

> > > > >

> > > > > Thanks,

> > > > >

> > > > > Bec

> > > > >

> > > > > Trevor 5 yo waiting Aspergers test results

> > > > > Spencer 16 months old suspected

> Mitochondrial

> > > > > Disorder

> > > > >

August 4, 2002

Oops, my apologies and thanks for setting me straight. =)

My Mom sneaks things in on my Dad that he doesn't know about. He is pretty happy eating it. He wouldn't want to eat it if he knew. Try not to think about the ingredients.

Ya know, baking soda, baking powder, flour, raw eggs, and salt each by themselves taste pretty bad. Don't know if you have ever tasted these ingredients. But if you put them all together they make a great cake or a nice bread. You eat those things, don't you? Next time you get grossed out thinking about yogurt in your treats, ask your Mom to let you taste baking soda. YUCK!!!!!

LOL

Bec

Mouse wrote:

She is pretty cool, but umm, my name is McLonigan (everyone calls me Mouse, I thinkbecause I don't talk)and I'm a boy,not a girl. My mom said that she makes a lot of stuff with sugarfree yogurt too (I didn't know until I asked her andnow I think I'm going to be sick-LOL). Mouse--- rebecpeck wrote:> Marty,> > Thanks for the great ideas. I have seen frozen bags> of fruit at the > store that have little recipes for those fruit> shakes. What a lucky > girl you are to have a Mom that makes you so many> yummy things to > feed your sweet tooth! =) Sounds like she is very> creative in > making things that are so cool!> > Bec> > > > > I have (or at least had) a book which had some> ideas> > > in for things like> > > that, but finding it now may be a problem. If> you> > > are specifically looking> > > for items which do NOT contain gluten, that> could be> > > a problem.> > > > > > I think it might be a good idea to get him> > > specifically tested for gluten> > > sensitivity before you exclude that, as it would> > > make finding things for him> > > much easier.> > > > > > Now, IF I can locate this book, I can have a go> at> > > scanning the specific> > > pages which have these things on them that may> be> > > useful, but my OCR> > > software is more than just a bit crappy. If it> is> > > not going to play ball, I> > > will just type the information out for you...> > > > > > Ade!> > > New Here - Need> treat> > > ideas for Sugar Free, GFCF> > > > > > > > > Hi all,> > > > > > I have a 5 yo that is being tested for high> > > functioning Aspergers. I> > > stumbled across severe sugar intolerance with> him> > > when he was 3 yo.> > > Although he is much improved without sugar,> corn,> > > and milk products,> > > he is still presenting Aspergers.> > > > > > After reading several posts from folks on> another> > > site about gluten> > > and wheat, I decided to try that this week.> > > > > > BTW, Trevor is having a stellar day. I am so> > > thrilled for him. Am> > > hoping this continues but am milking this day> for> > > all it is worth!> > > > > > The issue. I need ideas to make treats for my> son. > > > I had treats I> > > could make but they include wheat.> > > > > > He has zero tolerance for any form of sugar,> honey,> > > brown rice syrup,> > > ect. I do allow him to have fruit.> > > > > > Help, please.> > > > > > Thanks,> > > > > > Bec> > > > > > Trevor 5 yo waiting Aspergers test results> > > Spencer 16 months old suspected Mitochondrial> > > Disorder> > > > > > > > > > > >

August 4, 2002

Oops, my apologies and thanks for setting me straight. =)

My Mom sneaks things in on my Dad that he doesn't know about. He is pretty happy eating it. He wouldn't want to eat it if he knew. Try not to think about the ingredients.

Ya know, baking soda, baking powder, flour, raw eggs, and salt each by themselves taste pretty bad. Don't know if you have ever tasted these ingredients. But if you put them all together they make a great cake or a nice bread. You eat those things, don't you? Next time you get grossed out thinking about yogurt in your treats, ask your Mom to let you taste baking soda. YUCK!!!!!

LOL

Bec

Mouse wrote:

She is pretty cool, but umm, my name is McLonigan (everyone calls me Mouse, I thinkbecause I don't talk)and I'm a boy,not a girl. My mom said that she makes a lot of stuff with sugarfree yogurt too (I didn't know until I asked her andnow I think I'm going to be sick-LOL). Mouse--- rebecpeck wrote:> Marty,> > Thanks for the great ideas. I have seen frozen bags> of fruit at the > store that have little recipes for those fruit> shakes. What a lucky > girl you are to have a Mom that makes you so many> yummy things to > feed your sweet tooth! =) Sounds like she is very> creative in > making things that are so cool!> > Bec> > > > > I have (or at least had) a book which had some> ideas> > > in for things like> > > that, but finding it now may be a problem. If> you> > > are specifically looking> > > for items which do NOT contain gluten, that> could be> > > a problem.> > > > > > I think it might be a good idea to get him> > > specifically tested for gluten> > > sensitivity before you exclude that, as it would> > > make finding things for him> > > much easier.> > > > > > Now, IF I can locate this book, I can have a go> at> > > scanning the specific> > > pages which have these things on them that may> be> > > useful, but my OCR> > > software is more than just a bit crappy. If it> is> > > not going to play ball, I> > > will just type the information out for you...> > > > > > Ade!> > > New Here - Need> treat> > > ideas for Sugar Free, GFCF> > > > > > > > > Hi all,> > > > > > I have a 5 yo that is being tested for high> > > functioning Aspergers. I> > > stumbled across severe sugar intolerance with> him> > > when he was 3 yo.> > > Although he is much improved without sugar,> corn,> > > and milk products,> > > he is still presenting Aspergers.> > > > > > After reading several posts from folks on> another> > > site about gluten> > > and wheat, I decided to try that this week.> > > > > > BTW, Trevor is having a stellar day. I am so> > > thrilled for him. Am> > > hoping this continues but am milking this day> for> > > all it is worth!> > > > > > The issue. I need ideas to make treats for my> son. > > > I had treats I> > > could make but they include wheat.> > > > > > He has zero tolerance for any form of sugar,> honey,> > > brown rice syrup,> > > ect. I do allow him to have fruit.> > > > > > Help, please.> > > > > > Thanks,> > > > > > Bec> > > > > > Trevor 5 yo waiting Aspergers test results> > > Spencer 16 months old suspected Mitochondrial> > > Disorder> > > > > > > > > > > >

August 5, 2002

Hi Ade,

I hope you dont think Im being a " sticky beak " , but I am very interested in

Mouse's questions and your answers, so if you can, could you still post to

this group?

Thank you.

,

Mum to Lloyd, 12yrs. AS

Sydney NSW

>

>Reply-To: autism-aspergers

>To: <autism-aspergers >

>Subject: Re: Re: New Here - Need treat ideas for Sugar

>Free, GFCF

>Date: Sun, 4 Aug 2002 12:10:14 +0100

>

>You ask as many questions as you please, Mouse. It really does not bother

>me, although it may be a good idea to send them directly to my e-mail

>address, as the other members in this group may not wish to read my life

>story.

>

>So, here are your answers...

>

>Yes, I really did not talk for many years and yes, I am autistic.

>

>I did not speak a word until I was seven years old and was diagnosed as

>being autistic at the age of four.

>

>Did people make fun of me? Yes, all of the time. Due to the fact that I

>would sit in absolute silence, I was known as " coma " at school, although

>much later in life I developed the very rare and lethal condition of

>Brittle

>Asthma (don't worry, that is not something associated with being autistic)

>and from that day forth I have been called " wheezy " by those that know me

>well.

>

>While it is true that I was the butt of most jokes around my primary school

>(you may call this " elementary school " ), I was also something of an enigma

>for my teachers, as I would sit and do nothing that I was asked and for a

>long time they argued amongst themselves that I may actually be deaf and

>mute. This was proved wrong at the time I was diagnosed, but still they

>believed themselves to correct, as I did not respond to their requests for

>me to produce the work they requested.

>

>Much later on, the same doctor that diagnosed my condition said that I was

>not typically autistic, but that I had, in fact, the rarely seen " Savant

>Syndrome, " as certain skills were emerging which seemed almost superimposed

>upon my lack of ability in other areas.

>

>Things began to change somewhat when I did start to speak, as I would not

>do

>this consistently, but seemingly only when I felt like it. I have always

>possessed a phenomenal memory and the words I uttered were what they now

>term as " echolalic " in the fact that they were words directly taken from

>words I knew that had been spoken to me many years before. At around this

>time, they tried very hard to grade me for IQ (as this was impossible

>before). That same school also wanted to transfer me to another school

>up-country from here, which my parents had to go and see. They absolutely

>refused to agree to this transfer, as they saw that the kids there were not

>simply autistic, but severely mentally and physically handicapped and I

>believe now they were afraid that I would never leave the silence that

>surrounded me at that time.

>

>As I began to start talking, people did make fun of me a great deal,

>although this really did not make the slightest bit of difference to me,

>as,

>for a start, I lived in my own world most of the time and had no concept of

>people outside of that. I also discovered at this point in my life that

>most people who are not autistic and can speak perfectly well, say nothing

>that I was or am interested in and more to the point, most people make no

>sense whatsoever when they talk.

>

>Do I talk plain? That is a difficult question and I would have to answer

>it

>equivocally with yes and no. I have always spoken true to my own feelings

>and I think you may call this plain speaking. At the same time, I can get

>rather complex with my speech, but that really was the consequence of the

>fact that I became a physician and had to develop this (I am no longer a

>physician).

>

>I did not sign and talk at all. Before I began to talk, my favourite thing

>was my piano and I would play with (so I am told) remarkable skill and the

>one thing that I was able to do was excel in this area. I did not think of

>myself as being silent because of my piano, but when I began to speak, I

>stopped playing the piano and have not played it since (hence the reason I

>wrote that I wish I still did not talk).

>

>Do I still sign and talk? No, as I wrote before, I never did this in the

>first place.

>

>Was it hard to learn to talk? Yes, in a way, it was. I knew a lot of

>words

>when I did begin talking, but my intonation was incorrect and pronouns were

>usually mixed up.

>

>Do I talk to strangers now? Well, as I wrote before, being a physician I

>had to, although my work in medicine was confined to the treatment of

>cancer

>(blood cancers) and then only in children. I was considered one of the

>most

>arrogant physicians, as I would talk to the child concerned and NOT the

>parents that brought him/her to see me (I saw little point in asking the

>parents about a condition their child has). I have been fortunate, in many

>ways, that my parents protected me from much of the outside world and so

>those I talk to are those I know very well. People who have become good

>friends know about my handicap in this respect and understand that they may

>not always get much conversation from me. Strangers, in the sense of

>passing strangers, such as people in the street or those serving me in a

>shop do not get any conversation from me at all. This is not because I

>ignore them, but because I do not even know they are there.

>

>Did people make fun of me when I started to talk? God, yes, all of the

>time. I knew very few words of my own at that time and so spoke in phrases

>and sentences that I had gathered from situations. For example, when I was

>three years old, my parents took me and my sister (who is two and a half

>years my senior) to a hotel in London. All through the weekend, I had a

>fluffy toy dog that I kept on throwing out of the window and my mother

>would

>have to go down to the street to fetch it back. After doing this several

>times, she said " Don't throw the dog off the balcony! " in something of a

>harsh voice. When I began to talk, this is what I would say whenever I was

>corrected by a teacher or another student. To start with, nobody knew why

>I

>said this, or what it was supposed to mean, so most kids would go around

>asking me not to throw the dog off the balcony. It was only after my

>mother

>explained where this came from that the teachers realised I said it when I

>knew I had done something wrong, or was about to do something wrong and of

>course, every time I was scolded for doing something wrong.

>

>As time went by, I did develop more speech and used my own words, but they

>started out by being rather short and diluted. For example, if I had been

>out for a walk to the supermarket with my mother, when asked what I had

>done

>that day, I would reply, " walk shop home! " I also picked up rather quickly

>on swear words and used them profusely whenever I could. This went down,

>as

>they say, " like a lead balloon! "

>

>I think this must have bored other people here silly (sorry folks)...I hope

>this answers your questions, Mouse.

>

>Ade!

> New Here - Need

> > > treat

> > > > > ideas for Sugar Free, GFCF

> > > > >

> > > > > Hi all,

> > > > >

> > > > > I have a 5 yo that is being tested for high

> > > > > functioning Aspergers. I

> > > > > stumbled across severe sugar intolerance with

> > > him

> > > > > when he was 3 yo.

> > > > > Although he is much improved without sugar,

> > > corn,

> > > > > and milk products,

> > > > > he is still presenting Aspergers.

> > > > >

> > > > > After reading several posts from folks on

> > > another

> > > > > site about gluten

> > > > > and wheat, I decided to try that this week.

> > > > >

> > > > > BTW, Trevor is having a stellar day. I am so

> > > > > thrilled for him. Am

> > > > > hoping this continues but am milking this day

> > > for

> > > > > all it is worth!

> > > > >

> > > > > The issue. I need ideas to make treats for my

> > > son.

> > > > > I had treats I

> > > > > could make but they include wheat.

> > > > >

> > > > > He has zero tolerance for any form of sugar,

> > > honey,

> > > > > brown rice syrup,

> > > > > ect. I do allow him to have fruit.

> > > > >

> > > > > Help, please.

> > > > >

> > > > > Thanks,

> > > > >

> > > > > Bec

> > > > >

> > > > > Trevor 5 yo waiting Aspergers test results

> > > > > Spencer 16 months old suspected Mitochondrial

> > > > > Disorder

> > > > >

August 5, 2002

Please keep asking questions. That is how you will learn grow and improve.

Bec

Mouse wrote:

Really? Are you autistic? How did you learn to talk?Was it hard? Did people make fun of you? Do you talkplain when you talk? Do you sign? Do you still signand talk? Was it hard to start talking to people or doyou talk to strangers even now? Did people make fun ofyou when you didn't talk? Sorry. They just told me tostop asking questions. Sorry. Hope you will answer theones I asked though.Mouse--- Ade Rowley wrote:> Nice to meet you, mouse...> > I did not talk for many, many years, but I do now. > I often wish I still did> not!> New Here - Need> > treat> > > > ideas for Sugar Free, GFCF> > > >> > > >> > > > Hi all,> > > >> > > > I have a 5 yo that is being tested for high> > > > functioning Aspergers. I> > > > stumbled across severe sugar intolerance with> > him> > > > when he was 3 yo.> > > > Although he is much improved without sugar,> > corn,> > > > and milk products,> > > > he is still presenting Aspergers.> > > >> > > > After reading several posts from folks on> > another> > > > site about gluten> > > > and wheat, I decided to try that this week.> > > >> > > > BTW, Trevor is having a stellar day. I am so> > > > thrilled for him. Am> > > > hoping this continues but am milking this day> > for> > > > all it is worth!> > > >> > > > The issue. I need ideas to make treats for my> > son.> > > > I had treats I> > > > could make but they include wheat.> > > >> > > > He has zero tolerance for any form of sugar,> > honey,> > > > brown rice syrup,> > > > ect. I do allow him to have fruit.> > > >> > > > Help, please.> > > >> > > > Thanks,> > > >> > > > Bec> > > >> > > > Trevor 5 yo waiting Aspergers test results> > > > Spencer 16 months old suspected Mitochondrial> > > > Disorder> > > >> > > >> > > >> > > >

August 5, 2002

Thank you for sharing your story. It did not bore me at all. Gives hope since I don't know the capabilities of my baby. Gives me hope for Trevor, too. Although he is verbal, I am concerned about his other capabilities.

BTW, you didn't state how you came to begin speaking. Did the Docs or your parents do anything or did you just go? Do you remember those early years or was this information shared with you? You mentioned that things didn't hurt you since you were in your own world?

Bec

Ade Rowley wrote:

You are more than welcome, Mouse.If you want to take just one piece of advice from me, then NEVER tellyourself that there is anything that you could never be. Everybody said Icould never be anything at all. The headmaster at my primary school wantedto send me to a school which he evidently felt I belonged in, which was fullof kids who had very, very severe mental and physical impairments, to thedegree that they had very pressing medical needs which had to be dealt withmy staff trained to expert level in several medical procedures. Had it notbeen for my parents belief in me, that I was in there somewhere, I wouldnever have done anything in my life.I am no longer a doctor now, as I retired from practice when my partnerdied. I do work now, but not in medicine at all.I can see you have more skills than you think you do. I think, if you couldonly get a glimpse of some of the so called "brilliant minds" I have had toendure, you would see quite clearly that you are capable of many things.Just don't give up and most importantly, never see yourself as unable toachieve anything you want in life. I would rather sit in silence than hearwhat most "normal" people have to say.Very recently, I asked my mother if, had she known what she does now, whatshe would have changed about me, if she would have rather had a child thatwas not autistic. She thought about this for a while before she said, "Iwould have changed nothing at all about you. You were fine the way you wereand if you had stayed that way, then you would still be my special son..."Now, that caused me to be silent for some time after...Take care, mouse and never hesitate to ask...Ade! New Here - Need> > > treat> > > > > ideas for Sugar Free, GFCF> > > > >> > > > >> > > > > Hi all,> > > > >> > > > > I have a 5 yo that is being tested for high> > > > > functioning Aspergers. I> > > > > stumbled across severe sugar intolerance> with> > > him> > > > > when he was 3 yo.> > > > > Although he is much improved without sugar,> > > corn,> > > > > and milk products,> > > > > he is still presenting Aspergers.> > > > >> > > > > After reading several posts from folks on> > > another> > > > > site about gluten> > > > > and wheat, I decided to try that this week.> > > > >> > > > > BTW, Trevor is having a stellar day. I am> so> > > > > thrilled for him. Am> > > > > hoping this continues but am milking this> day> > > for> > > > > all it is worth!> > > > >> > > > > The issue. I need ideas to make treats for> my> > > son.> > > > > I had treats I> > > > > could make but they include wheat.> > > > >> > > > > He has zero tolerance for any form of sugar,> > > honey,> > > > > brown rice syrup,> > > > > ect. I do allow him to have fruit.> > > > >> > > > > Help, please.> > > > >> > > > > Thanks,> > > > >> > > > > Bec> > > > >> > > > > Trevor 5 yo waiting Aspergers test results> > > > > Spencer 16 months old suspected> Mitochondrial> > > > > Disorder> > > > >> > > > >> > > > >> > > > >

August 5, 2002

Ade & Mouse,

Thanks for sharing about yourselves & your lives. It is wonderful to get an inside view. My son fascinates me. I love the way his mind works. I hope he is able to express himself as the two of you as he grows up.

Please keep sharing.

Thanks,

Debi (the AZ one)

New Here - Need> > > treat> > > > > ideas for Sugar Free, GFCF> > > > >> > > > >> > > > > Hi all,> > > > >> > > > > I have a 5 yo that is being tested for high> > > > > functioning Aspergers. I> > > > > stumbled across severe sugar intolerance> with> > > him> > > > > when he was 3 yo.> > > > > Although he is much improved without sugar,> > > corn,> > > > > and milk products,> > > > > he is still presenting Aspergers.> > > > >> > > > > After reading several posts from folks on> > > another> > > > > site about gluten> > > > > and wheat, I decided to try that this week.> > > > >> > > > > BTW, Trevor is having a stellar day. I am> so> > > > > thrilled for him. Am> > > > > hoping this continues but am milking this> day> > > for> > > > > all it is worth!> > > > >> > > > > The issue. I need ideas to make treats for> my> > > son.> > > > > I had treats I> > > > > could make but they include wheat.> > > > >> > > > > He has zero tolerance for any form of sugar,> > > honey,> > > > > brown rice syrup,> > > > > ect. I do allow him to have fruit.> > > > >> > > > > Help, please.> > > > >> > > > > Thanks,> > > > >> > > > > Bec> > > > >> > > > > Trevor 5 yo waiting Aspergers test results> > > > > Spencer 16 months old suspected> Mitochondrial> > > > > Disorder> > > > >> > > > >> > > > >> > > > >

August 5, 2002

I am glad that you guys found it all so illuminating. I suppose that because this is the story of my life, I do tend to play it down. I know that sometimes, some people can talk for hours on end about things which are important to them and while that is fine, I know it can also be somewhat tiresome after a while, so I probably tend to be rather conscious of that.

How did I begin speaking? Strangely enough, I just did. One morning, I awoke and my world was no longer in silence and I spoke my first words. I remember that day very clearly, because when I spoke, the entire house fell into a silence similar to the one I had lived in for seven years and I wonder now that my family had their first experience of what it was like for me then, even just for those first seconds, when my parents heard their son's voice for the first time.

Do I remember those early years? Yes, I remember everything. One thing that I am constantly being told is that I have a phenomenal memory. My father makes fun of me because of this all of the time. If somebody asks a question regarding events past and I am in the room, he tells whoever it is that asked to ask me, as I will remember what was on the television, what everybody was wearing, what kind of day it was, what day of the week it was, what time it all took place and where everybody sat at the time and if anybody coughed or sneezed at that second! While that is the case, it is also true that I lived in my own world and nothing hurt me there. It is hard to explain now, to find the words that can make a life that had no sense make sense. Have any of you guys ever walked on a promenade by the beach and seen those binocular-type devices, that you insert a coin into and look out to sea? That is similar to what I saw - almost as though my body was that pair of binoculars and that I, a voice in my head, looked through those eyes. My body was like some kind of instrument that I lived in, but what happened to it really made no difference. People could shout at me and I would remain silent and not change my position. Particularly at my primary school, certain teachers would hit me repeatedly, but this really did not make any difference, as I felt nothing and consequently, I never cried. So, while I was not actually "there," I could see what was going on. It was not until much later on that I would make any sense of it.

Incidentally, my first words were, "How long have I been here?" (more correctly, I said, "Oww long vie bin ere?").

I talk much clearer now and while I was given various therapies to help me, they made little difference.

Ade!

New Here - Need> > > treat> > > > > ideas for Sugar Free, GFCF> > > > >> > > > >> > > > > Hi all,> > > > >> > > > > I have a 5 yo that is being tested for high> > > > > functioning Aspergers. I> > > > > stumbled across severe sugar intolerance> with> > > him> > > > > when he was 3 yo.> > > > > Although he is much improved without sugar,> > > corn,> > > > > and milk products,> > > > > he is still presenting Aspergers.> > > > >> > > > > After reading several posts from folks on> > > another> > > > > site about gluten> > > > > and wheat, I decided to try that this week.> > > > >> > > > > BTW, Trevor is having a stellar day. I am> so> > > > > thrilled for him. Am> > > > > hoping this continues but am milking this> day> > > for> > > > > all it is worth!> > > > >> > > > > The issue. I need ideas to make treats for> my> > > son.> > > > > I had treats I> > > > > could make but they include wheat.> > > > >> > > > > He has zero tolerance for any form of sugar,> > > honey,> > > > > brown rice syrup,> > > > > ect. I do allow him to have fruit.> > > > >> > > > > Help, please.> > > > >> > > > > Thanks,> > > > >> > > > > Bec> > > > >> > > > > Trevor 5 yo waiting Aspergers test results> > > > > Spencer 16 months old suspected> Mitochondrial> > > > > Disorder> > > > >> > > > >> > > > >> > > > >

August 5, 2002

Thank you for sharing. Welcome to the interactive world. Your story helps parents and medical professionals attempting to help children locked inside of themselves. Your memory that you knew exactly what was happening but it didn't hurt you is also helpful. Since these kids can't / don't share, it is impossible to ask them. Thanks again,

Bec

Ade Rowley wrote:

I am glad that you guys found it all so illuminating. I suppose that because this is the story of my life, I do tend to play it down. I know that sometimes, some people can talk for hours on end about things which are important to them and while that is fine, I know it can also be somewhat tiresome after a while, so I probably tend to be rather conscious of that.

How did I begin speaking? Strangely enough, I just did. One morning, I awoke and my world was no longer in silence and I spoke my first words. I remember that day very clearly, because when I spoke, the entire house fell into a silence similar to the one I had lived in for seven years and I wonder now that my family had their first experience of what it was like for me then, even just for those first seconds, when my parents heard their son's voice for the first time.

Do I remember those early years? Yes, I remember everything. One thing that I am constantly being told is that I have a phenomenal memory. My father makes fun of me because of this all of the time. If somebody asks a question regarding events past and I am in the room, he tells whoever it is that asked to ask me, as I will remember what was on the television, what everybody was wearing, what kind of day it was, what day of the week it was, what time it all took place and where everybody sat at the time and if anybody coughed or sneezed at that second! While that is the case, it is also true that I lived in my own world and nothing hurt me there. It is hard to explain now, to find the words that can make a life that had no sense make sense. Have any of you guys ever walked on a promenade by the beach and seen those binocular-type devices, that you insert a coin into and look out to sea? That is similar to what I saw - almost as though my body was that pair of binoculars and that I, a voice in my head, looked through those eyes. My body was like some kind of instrument that I lived in, but what happened to it really made no difference. People could shout at me and I would remain silent and not change my position. Particularly at my primary school, certain teachers would hit me repeatedly, but this really did not make any difference, as I felt nothing and consequently, I never cried. So, while I was not actually "there," I could see what was going on. It was not until much later on that I would make any sense of it.

Incidentally, my first words were, "How long have I been here?" (more correctly, I said, "Oww long vie bin ere?").

I talk much clearer now and while I was given various therapies to help me, they made little difference.

Ade!

New Here - Need> > > treat> > > > > ideas for Sugar Free, GFCF> > > > >> > > > >> > > > > Hi all,> > > > >> > > > > I have a 5 yo that is being tested for high> > > > > functioning Aspergers. I> > > > > stumbled across severe sugar intolerance> with> > > him> > > > > when he was 3 yo.> > > > > Although he is much improved without sugar,> > > corn,> > > > > and milk products,> > > > > he is still presenting Aspergers.> > > > >> > > > > After reading several posts from folks on> > > another> > > > > site about gluten> > > > > and wheat, I decided to try that this week.> > > > >> > > > > BTW, Trevor is having a stellar day. I am> so> > > > > thrilled for him. Am> > > > > hoping this continues but am milking this> day> > > for> > > > > all it is worth!> > > > >> > > > > The issue. I need ideas to make treats for> my> > > son.> > > > > I had treats I> > > > > could make but they include wheat.> > > > >> > > > > He has zero tolerance for any form of sugar,> > > honey,> > > > > brown rice syrup,> > > > > ect. I do allow him to have fruit.> > > > >> > > > > Help, please.> > > > >> > > > > Thanks,> > > > >> > > > > Bec> > > > >> > > > > Trevor 5 yo waiting Aspergers test results> > > > > Spencer 16 months old suspected> Mitochondrial> > > > > Disorder> > > > >> > > > >> > > > >> > > > >

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