Re: school and diet

[Guest guest]

Laurie and ,

Do your children have aides at school that " shadow " them? We have this

written into the IEP and the shadow helps to ensure that stays out

of the bad food. Josh is on a very strict rotation diet and we have had

very good success at his school where they eat all the time. It's a

pain, but I send his breakfast and tons of snacks and lunch with him on

the days when he goes for a full day. He has only gotten the wrong food

2 times this year and it was a very small amount due to the teachers

quick fingers.

I guess what I'm trying to say, is that doing the diet at school does

work, but it is hard. is around wrong food all the time at home

and at school and he has learned that he has to eat what I give him.

The main key is to stay in constant communication with the school.

Josh is going to be 5 this month.

On Sun, 11 Feb 2001 20:39:56 -0800 " TnT Pilger " tntpilger@...>

writes:

> Hi all,

> First, Laurie

> so glad to hear that your son is finding ways to not feel left

> out--it must

> be very difficult.

>

> My son is 3 1/2 and for Vlentines day they are having pizza at

> school. He

> wont be going to school that day--I am very frustrated by it. My

> daughter

> is in Kindergarten and atleast once a week there is a pizza party or

> a

> birthday for one of the kids--tons of crap is brought to school.

> Not only

> is it not GFCF but it is the most unhealthy food you could pull from

> the

> grocery shelf (besides the liquor dept. I suppose When my son

> is in

> Kindergarten, I will not be able to pull him oyut once a week. I

> hope by

> then he will understand cognitively why he cant eat what the other

> kids are

> eating but my heart breaks thinking about how left out he will feel.

> How

> left out we all already are. We use to hang out w/ a moms club

> group but so

> many of the activitioes include food, or all birthday parties have

> pizza,

> cake etc. No good alternative for pizza in my opinion and we just

> cant

> attend. It is very isolating . How am I going to handle this? I

> also want

> to put my son in a typical preschool program however the good ones I

> have

> found include snack problems:

> One school has the parents who work that day bring the snack:

> probably

> cheese , goldfish crackers etc. Do we have to avoid this school

> becuz of

> the snack?????

>

>

> Second school provides the snack which is usually fruit--apples,

> bananas,

> and oranges. Tend to avoid these due to phenols......Would they

> change

> fruit or should I let him eat it or bring something else???? Ugh!!

>

> Really quite frustrated by this... Is this asolvable problem for a

> ny of

> you?? How do explain to a kid who is aware enough to know he is not

> eating

> what the others eat but cant have what they eat when cognitively

> they just

> dont understand this. Besides hwat 3 year old does?? Does a

> five/six year

> old understand this even? Thank you for thoughts, sorry so long.

> Frustrated and sad mom,

>

> Newbie Here! Hello!

>

>

> >

> > Hello all,

> >

> > First let me start by saying " Thank Goodness " for Gluten Free

> Companies! I

> > couldn't do this with out them. I " HATE " (AND I DO NOT LIKE THAT

> WORD) TO

> > COOK! I always have, so it is very strange to me that I should get

> stuck

> in

> > the kitchen night and day! But that's my life, so I am there,

> along with

> all

> > of you. Ms. Robens and Specialty Selects send us big boxes and I

> smile

> every

> > time. We may have to move to a smaller house one day, but I'd do

> it in a

> > minute to stay out of the kitchen.LOL!!

> >

> > I am still learning all the different companies and recipes out

> there!

> >

> > The last year and a half has been tough. I don't know if I am the

> only

> one

> > on this list that has a child with CELIAC'S Disease or not??? The

> doctors

> > wouldn't listen to me and thought that I was nuts complaining

> about having

> a

> > skinny child. " Some kids are skinny " , only to find out when they

> finally

> did

> > listen to me that he was slowly dying from Celiac's Disease. When

> they

> > finally did the biopsy he had NO VILLI left in his small

> intestines, they

> > were completely flat, and he had been living in pain, but knew no

> different

> > and never said one word. He couldn't ride is bike from the pain,

> and

> > everyone but me thought he was uncoordinated. At 7 years old??

> Needless to

> > say we changed doctors and I won't let a doctor not listen to me

> ever

> again!

> > He has osteoporosis, so his bones are very brittle. He can't ski

> this

> year,

> > we live in New Hampshire and Daddy ski patrols so that is hard on

> him.

> He's

> > a great kid and takes it all much better than I ever thought he

> would.

> Pizza

> > party at Scouts Friday night and he never said one word.

> >

> > He started a club in our town called The I Can't Eat " THAT " Club!

> For all

> > kids with any type of food issue. They have 6 members and meet

> once a

> month.

> > They had a candy free Halloween Party with little prizes, made

> trick or

> > treating more fun, because they got to trade all the BAD candy for

> good

> > candy when they got home. They also had a piñata stuffed with toys

> instead

> > of candy. They all have the attitude that they will not miss out

> on fun

> > things at school or home because of this. My son goes to birthday

> parties

> > and brings his own cake and a scope of ice cream in a baggie and

> when its

> > time, I scope it onto the place, no one is the wiser most times. He

> doesn't

> > hide it, because Celiac's is so serious, but he doesn't make it an

> issue

> > either. He refuses to let it hold him back! I hope he is well

> soon, as he

> is

> > still a very sick little boy!

> >

> > Some of you might be wondering why I didn't join a Celiac's List,

> I have,

> > but I am very interested in learning about GF/CF diet in regards

> to Autism

> > as well. My younger son has DSI(Dysfunction of Sensory

> Integration)or SID.

> > We know he has an addiction to sugar, so we are interested to see

> that

> > connection to Gluten as well. I am also interested because what he

> eats

> does

> > seem to effect his DSI symptoms. I do know enough about Autism to

> know

> that

> > these children also have DSI issues as well. My son has changed so

> very

> much

> > since DSI therapy, both with a therapist and and OT. He is

> thriving in

> first

> > grade which is something I truly never thought possible a year

> ago. Before

> > therapy he was out of control. The book The OUT of SYNC CHILD<

> saved our

> > lives.

> >

> > I have started a support group in Londonderry, NH for DSI this

> past June.

> I

> > have recently joined forces with Dr. Lucy Jane ( who has

> worked in

> DSI

> > for 30 years) , I have helped a mom near her in Denver start

> another group

> > out there and Dr, will be announcing DSI PARENT CONNECTIONS

> at this

> > weeks LA Conference with many top people in the field. We have

> 30(We hope)

> > groups set to start this spring around the country. More to follow

> as word

> > spreads that we are looking for parents to host one meeting once a

> month.

> > Soon parents will be able to log onto

> > SInetwork.org and search by state to find a DSI PARENT CONNECTION

> near

> them.

> > I am now a true believer in the POWER OF ONE!!!!

> >

> > I am sure someone has posted the POWER OF ONE day coming up in

> March in

> > Washington, DC. It is sure to be exciting and get National

> attention. I am

> > thrilled for that.

> >

> > Sorry for the long intro. Now for my questions!

> > 1. Are there any other Celiac Parents on this group?

> >

> > 2. How many of you know about the connection to DSI with Autism

> and also

> > FOOD?

> >

> > 3.Fast FOOD is our BIG ISSUE, as I haven't had a minute to search

> outside

> of

> > my home, except Mcs. They have a list on their website,

> which is

> > wonderful, but,THey have for example Pickles on the GF list, well

> they

> have

> > distilled vinegar in them.( THIS is OK, for some on GF diet, but

> not

> > CELIACS) So I am so afraid to take him anywhere. Anyone have any

> help

> here??

> >

> > Thanks so much for all your help in advance!

> >

> > God Bless,

> > Laurie Renke

> >

> >

> >

> >

[Guest guest]

Can you volunteer to be the party mom? That way you can be there, have a

say in the menu and really make sure your sweetie is supervised when the

food is out. Just a thought.

school and diet

>Hi all,

>First, Laurie

>so glad to hear that your son is finding ways to not feel left out--it must

>be very difficult.

>

> My son is 3 1/2 and for Vlentines day they are having pizza at school. He

>wont be going to school that day--I am very frustrated by it. My daughter

>is in Kindergarten and atleast once a week there is a pizza party or a

>birthday for one of the kids--tons of crap is brought to school. Not only

>is it not GFCF but it is the most unhealthy food you could pull from the

>grocery shelf (besides the liquor dept. I suppose When my son is in

>Kindergarten, I will not be able to pull him oyut once a week. I hope by

>then he will understand cognitively why he cant eat what the other kids are

>eating but my heart breaks thinking about how left out he will feel. How

>left out we all already are. We use to hang out w/ a moms club group but

so

>many of the activitioes include food, or all birthday parties have pizza,

>cake etc. No good alternative for pizza in my opinion and we just cant

>attend. It is very isolating . How am I going to handle this? I also

want

>to put my son in a typical preschool program however the good ones I have

>found include snack problems:

>One school has the parents who work that day bring the snack: probably

>cheese , goldfish crackers etc. Do we have to avoid this school becuz of

>the snack?????

>

>

>Second school provides the snack which is usually fruit--apples, bananas,

>and oranges. Tend to avoid these due to phenols......Would they change

>fruit or should I let him eat it or bring something else???? Ugh!!

>

>Really quite frustrated by this... Is this asolvable problem for a ny of

>you?? How do explain to a kid who is aware enough to know he is not eating

>what the others eat but cant have what they eat when cognitively they just

>dont understand this. Besides hwat 3 year old does?? Does a five/six year

>old understand this even? Thank you for thoughts, sorry so long.

>Frustrated and sad mom,

>

> Newbie Here! Hello!

>

>

>>

>> Hello all,

>>

>> First let me start by saying " Thank Goodness " for Gluten Free Companies!

I

>> couldn't do this with out them. I " HATE " (AND I DO NOT LIKE THAT WORD)

TO

>> COOK! I always have, so it is very strange to me that I should get stuck

>in

>> the kitchen night and day! But that's my life, so I am there, along with

>all

>> of you. Ms. Robens and Specialty Selects send us big boxes and I smile

>every

>> time. We may have to move to a smaller house one day, but I'd do it in a

>> minute to stay out of the kitchen.LOL!!

>>

>> I am still learning all the different companies and recipes out there!

>>

>> The last year and a half has been tough. I don't know if I am the only

>one

>> on this list that has a child with CELIAC'S Disease or not??? The

doctors

>> wouldn't listen to me and thought that I was nuts complaining about

having

>a

>> skinny child. " Some kids are skinny " , only to find out when they finally

>did

>> listen to me that he was slowly dying from Celiac's Disease. When they

>> finally did the biopsy he had NO VILLI left in his small intestines, they

>> were completely flat, and he had been living in pain, but knew no

>different

>> and never said one word. He couldn't ride is bike from the pain, and

>> everyone but me thought he was uncoordinated. At 7 years old?? Needless

to

>> say we changed doctors and I won't let a doctor not listen to me ever

>again!

>> He has osteoporosis, so his bones are very brittle. He can't ski this

>year,

>> we live in New Hampshire and Daddy ski patrols so that is hard on him.

>He's

>> a great kid and takes it all much better than I ever thought he would.

>Pizza

>> party at Scouts Friday night and he never said one word.

>>

>> He started a club in our town called The I Can't Eat " THAT " Club! For all

>> kids with any type of food issue. They have 6 members and meet once a

>month.

>> They had a candy free Halloween Party with little prizes, made trick or

>> treating more fun, because they got to trade all the BAD candy for good

>> candy when they got home. They also had a piñata stuffed with toys

instead

>> of candy. They all have the attitude that they will not miss out on fun

>> things at school or home because of this. My son goes to birthday parties

>> and brings his own cake and a scope of ice cream in a baggie and when its

>> time, I scope it onto the place, no one is the wiser most times. He

>doesn't

>> hide it, because Celiac's is so serious, but he doesn't make it an issue

>> either. He refuses to let it hold him back! I hope he is well soon, as he

>is

>> still a very sick little boy!

>>

>> Some of you might be wondering why I didn't join a Celiac's List, I have,

>> but I am very interested in learning about GF/CF diet in regards to

Autism

>> as well. My younger son has DSI(Dysfunction of Sensory Integration)or

SID.

>> We know he has an addiction to sugar, so we are interested to see that

>> connection to Gluten as well. I am also interested because what he eats

>does

>> seem to effect his DSI symptoms. I do know enough about Autism to know

>that

>> these children also have DSI issues as well. My son has changed so very

>much

>> since DSI therapy, both with a therapist and and OT. He is thriving in

>first

>> grade which is something I truly never thought possible a year ago.

Before

>> therapy he was out of control. The book The OUT of SYNC CHILD< saved our

>> lives.

>>

>> I have started a support group in Londonderry, NH for DSI this past June.

>I

>> have recently joined forces with Dr. Lucy Jane ( who has worked in

>DSI

>> for 30 years) , I have helped a mom near her in Denver start another

group

>> out there and Dr, will be announcing DSI PARENT CONNECTIONS at this

>> weeks LA Conference with many top people in the field. We have 30(We

hope)

>> groups set to start this spring around the country. More to follow as

word

>> spreads that we are looking for parents to host one meeting once a month.

>> Soon parents will be able to log onto

>> SInetwork.org and search by state to find a DSI PARENT CONNECTION near

>them.

>> I am now a true believer in the POWER OF ONE!!!!

>>

>> I am sure someone has posted the POWER OF ONE day coming up in March in

>> Washington, DC. It is sure to be exciting and get National attention. I

am

>> thrilled for that.

>>

>> Sorry for the long intro. Now for my questions!

>> 1. Are there any other Celiac Parents on this group?

>>

>> 2. How many of you know about the connection to DSI with Autism and also

>> FOOD?

>>

>> 3.Fast FOOD is our BIG ISSUE, as I haven't had a minute to search outside

>of

>> my home, except Mcs. They have a list on their website, which is

>> wonderful, but,THey have for example Pickles on the GF list, well they

>have

>> distilled vinegar in them.( THIS is OK, for some on GF diet, but not

>> CELIACS) So I am so afraid to take him anywhere. Anyone have any help

>here??

>>

>> Thanks so much for all your help in advance!

>>

>> God Bless,

>> Laurie Renke

>>

>>

>>

>>

[Guest guest]

It all depends on how your child has progressed in order if they can

understand the diet and stick with it when you're not around. We are very

fortunate that our son adheres to the diet and doesn't make a fuss.

I would send your child to school on Valentines but just send him in with his

own treats. I also would send in a little pizza for him to eat. Noah's

bread is wonderful for making little individual (english muffin size) pizza's

or make it into a personal size pizza. I cook it in the oven for about 10

minutes first and then put my own sauce on it (homemade spaghetti sauce) and

then put Soymage mozzerella and then Applegate Farms pepperoni. He loves it

and it's the closest thing to the real thing. He asks for it all the time.

Try it out. You can always make them ahead of time too and stick them in the

freezer and then send them into school when they are having pizza. Don't

give up hope, we'll be doiing this for a long time so we might as well start

now.

Good luck