Re: general awareness--problems with school

[Guest guest]

Lauretta

Have you thought of homeschooling your son?

With all the horror stories I've heard from other parents of celiacs and the public

(and sometimes private) schools, it's just another reason for me to keep my kids

home.

Jodanne

Re: general awareness

My sentiments exactly. Why does it have to be so hard for a child to go to school and blend in with all the other medically issued. Thank you for sharing. We have a school that has never dealt with celiac issues and who (seemingly) would rather go by what they can find out without our input. We could not even get a 504 out of them. The best we got was an iep at the start of the first year. I am going to go as far as I need to to help our son succeed in school as we all know that any accident can be prevented and it does affect how our children learn when they get mouth ulcers, skin lesions, and stomach pain with diarrea. Well, that said, I thank all of you for reading this and understanding how I feel. Just wish I could get others in our area to help back this meager effort of mine. GOD bless you all in your efforts. Lauretta, mother of adopted 5 yo celiac

While reading the posts titled Re: accomodation in restaurants/ was Celiac vs IBS article in Self

and comments like this

"Outback Steakhouse has a well-researched GF menu. We have eaten in 8 different Outbacks in our travels. In the less half of them did our server actually know what "gluten-free" meant. Yes, the company took the time *and money* to develop the menu, but I don't see them spending their money to keep up with staff education."

it occurred to me, once again, that general awareness of Celiac is so important. There are other diseases out there that affect many less people but most of us are aware of the disease (for example, sickel cell anemia. I know it primarily affects african-americans. It is hereditary and causes pain.) If the general public knew the basics of celiac (person follows gluten-free diet, can get immediate or long-term reactions from gluten) it would probably be alot easier to get sincere cooperation from restaurants, school cafeterias, and even our own families! : )

[Guest guest]

Yes, I have. This is not a child to keep at home! He is very outgoing and too outspoken! He will be a quick learner on how to deal with this a lot better at school. He is only 5 and spent last year in pre-k and even rode a bus to school. He learned more from school than I could get him to learn at home. I am supposing all that competition does him well. I am just trying to get people who do not know about Celiac better informed so they may better service other children in school if this should come up again. Thank you for your thoughts. Lauretta

Lauretta

Have you thought of homeschooling your son?

With all the horror stories I've heard from other parents of celiacs and the public

(and sometimes private) schools, it's just another reason for me to keep my kids

home.

Jodanne

Re: general awareness

My sentiments exactly. Why does it have to be so hard for a child to go to school and blend in with all the other medically issued. Thank you for sharing. We have a school that has never dealt with celiac issues and who (seemingly) would rather go by what they can find out without our input. We could not even get a 504 out of them. The best we got was an iep at the start of the first year. I am going to go as far as I need to to help our son succeed in school as we all know that any accident can be prevented and it does affect how our children learn when they get mouth ulcers, skin lesions, and stomach pain with diarrea. Well, that said, I thank all of you for reading this and understanding how I feel. Just wish I could get others in our area to help back this meager effort of mine. GOD bless you all in your efforts. Lauretta, mother of adopted 5 yo celiac

While reading the posts titled Re: accomodation in restaurants/ was Celiac vs IBS article in Self

and comments like this

" Outback Steakhouse has a well-researched GF menu. We have eaten in 8 different Outbacks in our travels. In the less half of them did our server actually know what " gluten-free " meant. Yes, the company took the time *and money* to develop the menu, but I don't see them spending their money to keep up with staff education. "

it occurred to me, once again, that general awareness of Celiac is so important. There are other diseases out there that affect many less people but most of us are aware of the disease (for example, sickel cell anemia. I know it primarily affects african-americans. It is hereditary and causes pain.) If the general public knew the basics of celiac (person follows gluten-free diet, can get immediate or long-term reactions from gluten) it would probably be alot easier to get sincere cooperation from restaurants, school cafeterias, and even our own families! : )

[Guest guest]

I read all the trouble people go through with their kids and school, but

I've had the opposite situation. I didn't bother with the IEP or 504,

though I thought about it. Turns out kids with severe egg/peanut/etc.,

allergies can't get these as they are allergies an not autoimmune

disorders. Lucky us? Lol! Anyway, I have three, at the time of diagnosis

they were going in 10th, 4th and 1st.

For elementary school, I spoke with the nurse and the teachers. The

nurse has been wonderfully helpful, even giving me freezer space for gf

cupcakes for all those unannounced birthday surprises. The teachers were

helpful, but unless it was easily identifiable (food) they didn't really

get it. I don't think going by way of an IEP or whatever would change

this situation. For instance, my 1st grader was severely glutened from

an art project. That first year the kids were home quite a bit, but

because the nurse knew the situation, it was NEVER a problem. Also, both

of my younger kids are very self-sufficient about policing their foods.

They would eat nothing rather than chance being glutened, even if it's a

party and someone tells them it's okay (how many times have we heard,

" there's no wheat in it, it just has flour... " *SIGH*) With my 4th

grader, he has two friends with severe egg allergies that he's known

since 1st grade. He was just added to the " check the food list " group

and no one found it unusual.

High school is a little more interesting. My son is responsible for

himself. That first year there were many mistakes. Since he would get a

migraine along with DH and stomach pains, he'd be at the nurse's within

a short time of being glutened (he was worse about policing himself than

the younger kids at first. He has definitely learned his lesson,

though!) The nurse and I ended up being pretty familiar with one

another, to the point where she would subtly let me know that she

thought he was using the celiacs claim to avoid something (which,

honestly, he did.) However, the second year of being GF, he was not

willing to chance any kind of contamination and have to miss school, so

he's been very careful and only a couple times went to the nurse.

I personally don't feel the IEPs and 504s are necessary for kids with

celiacs. Teachers now are made to attend instructions on what to do in

cases of allergy kids so they are more aware than before of potential

dangers. Also, imo, it is the person's responsibility (whether child or

adult, and a five year old is definitely old enough to start learning)

to make appropriate food choices for themselves. How else can you ever

be comfortable letting them go anywhere without you? Yes, there will be

mistakes. Yes, they'll miss school. As an elementary student, it's not

going to be the end of the world if they miss 10-20 days (as mine did

their first gf year.) Speak with the teachers and the nurse. Be

EXTREMELY pleasant and just assume cooperation and I'll bet, 9 times out

of 10, you'll get it. Teachers especially like the nice, helpful ( " I'd

LOVE to help with the sculpting art project/spring cookie party/snack

supply/ANYTHING, " lol) non-nagging, non-demanding parents. And if

you're being sweet as candy, they'll be less likely to be annoyed by you

and more likely to help when your child misses too much and needs extra

help.

> >

> > Lauretta

> > Have you thought of homeschooling your son?

> > With all the horror stories I've heard from other parents of celiacs

and

> > the public

> > (and sometimes private) schools, it's just another reason for me to

keep

> > my kids

> > home.

> > Jodanne

> >

> >

[Guest guest]

I am also having difficulites with the school for the 2006/2007 school year. Melonie ~Melonie, leader for ROCK NoVA/Metro DC & owner of SillyYaks, www.groups.yahoo.com/group/SillyYaks __________________________________________________

[Guest guest]

I totally agree with a. Being a public school teacher myself and

a parent of a celiac 4 year old, I don't think I will go the route

of the 504 plan when she gets to kindergarten next year. I have

found just through her preschool teacher that working with the

teacher individually is the best route. I know my daughter will

come into contact with more teachers/adults in elementary school so

I will have to expand who I have to inform about her celiac and the

do and the don'ts involved. It is not that I don't want to label my

daughter, I just think that it is better to try to go the personal

route and then if that doesn't work then do a 504. But even if you

do a 504 as a parent you must be responsible to make sure the

school is reminded (in a nice way ) about it at the beginning of

each school year. Schools are so inundated with paperwork now that

as a parent you must make sure the school knows immediately at the

beginning of each year. I'm not trying to make excuses for the

schools but it is just reality.

It makes me sad when people give up and go to homeschooling because

of problems they have had dealing with school personnel. There are

many, many, many caring teachers out there. I'm so sorry that so

many of you have had negative experiences with schools regarding

celiac.

In SillyYaks , " aPRS " wrote:

>

>

> I read all the trouble people go through with their kids and

school, but

> I've had the opposite situation. I didn't bother with the IEP or

504,

> though I thought about it. Turns out kids with severe

egg/peanut/etc.,

> allergies can't get these as they are allergies an not autoimmune

> disorders. Lucky us? Lol! Anyway, I have three, at the time of

diagnosis

> they were going in 10th, 4th and 1st.

>

> For elementary school, I spoke with the nurse and the teachers. The

> nurse has been wonderfully helpful, even giving me freezer space

for gf

> cupcakes for all those unannounced birthday surprises. The

teachers were

> helpful, but unless it was easily identifiable (food) they didn't

really

> get it. I don't think going by way of an IEP or whatever would

change

> this situation. For instance, my 1st grader was severely glutened

from

> an art project. That first year the kids were home quite a bit, but

> because the nurse knew the situation, it was NEVER a problem.

Also, both

> of my younger kids are very self-sufficient about policing their

foods.

> They would eat nothing rather than chance being glutened, even if

it's a

> party and someone tells them it's okay (how many times have we

heard,

> " there's no wheat in it, it just has flour... " *SIGH*) With my 4th

> grader, he has two friends with severe egg allergies that he's

known

> since 1st grade. He was just added to the " check the food list "

group

> and no one found it unusual.

>

> High school is a little more interesting. My son is responsible for

> himself. That first year there were many mistakes. Since he would

get a

> migraine along with DH and stomach pains, he'd be at the nurse's

within

> a short time of being glutened (he was worse about policing

himself than

> the younger kids at first. He has definitely learned his lesson,

> though!) The nurse and I ended up being pretty familiar with one

> another, to the point where she would subtly let me know that she

> thought he was using the celiacs claim to avoid something (which,

> honestly, he did.) However, the second year of being GF, he was not

> willing to chance any kind of contamination and have to miss

school, so

> he's been very careful and only a couple times went to the nurse.

>

> I personally don't feel the IEPs and 504s are necessary for kids

with

> celiacs. Teachers now are made to attend instructions on what to

do in

> cases of allergy kids so they are more aware than before of

potential

> dangers. Also, imo, it is the person's responsibility (whether

child or

> adult, and a five year old is definitely old enough to start

learning)

> to make appropriate food choices for themselves. How else can you

ever

> be comfortable letting them go anywhere without you? Yes, there

will be

> mistakes. Yes, they'll miss school. As an elementary student, it's

not

> going to be the end of the world if they miss 10-20 days (as mine

did

> their first gf year.) Speak with the teachers and the nurse. Be

> EXTREMELY pleasant and just assume cooperation and I'll bet, 9

times out

> of 10, you'll get it. Teachers especially like the nice, helpful

( " I'd

> LOVE to help with the sculpting art project/spring cookie

party/snack

> supply/ANYTHING, " lol) non-nagging, non-demanding parents. And if

> you're being sweet as candy, they'll be less likely to be annoyed

by you

> and more likely to help when your child misses too much and needs

extra

> help.

>

>

>

> > >

> > > Lauretta

> > > Have you thought of homeschooling your son?

> > > With all the horror stories I've heard from other parents of

celiacs

> and

> > > the public

> > > (and sometimes private) schools, it's just another reason for

me to

> keep

> > > my kids

> > > home.

> > > Jodanne

> > >

> > >

>

[Guest guest]

I totally agree with a. Being a public school teacher myself and

a parent of a celiac 4 year old, I don't think I will go the route

of the 504 plan when she gets to kindergarten next year. I have

found just through her preschool teacher that working with the

teacher individually is the best route. I know my daughter will

come into contact with more teachers/adults in elementary school so

I will have to expand who I have to inform about her celiac and the

do and the don'ts involved. It is not that I don't want to label my

daughter, I just think that it is better to try to go the personal

route and then if that doesn't work then do a 504. But even if you

do a 504 as a parent you must be responsible to make sure the

school is reminded (in a nice way ) about it at the beginning of

each school year. Schools are so inundated with paperwork now that

as a parent you must make sure the school knows immediately at the

beginning of each year. I'm not trying to make excuses for the

schools but it is just reality.

It makes me sad when people give up and go to homeschooling because

of problems they have had dealing with school personnel. There are

many, many, many caring teachers out there. I'm so sorry that so

many of you have had negative experiences with schools regarding

celiac.

In SillyYaks , " aPRS " wrote:

>

>

> I read all the trouble people go through with their kids and

school, but

> I've had the opposite situation. I didn't bother with the IEP or

504,

> though I thought about it. Turns out kids with severe

egg/peanut/etc.,

> allergies can't get these as they are allergies an not autoimmune

> disorders. Lucky us? Lol! Anyway, I have three, at the time of

diagnosis

> they were going in 10th, 4th and 1st.

>

> For elementary school, I spoke with the nurse and the teachers. The

> nurse has been wonderfully helpful, even giving me freezer space

for gf

> cupcakes for all those unannounced birthday surprises. The

teachers were

> helpful, but unless it was easily identifiable (food) they didn't

really

> get it. I don't think going by way of an IEP or whatever would

change

> this situation. For instance, my 1st grader was severely glutened

from

> an art project. That first year the kids were home quite a bit, but

> because the nurse knew the situation, it was NEVER a problem.

Also, both

> of my younger kids are very self-sufficient about policing their

foods.

> They would eat nothing rather than chance being glutened, even if

it's a

> party and someone tells them it's okay (how many times have we

heard,

> " there's no wheat in it, it just has flour... " *SIGH*) With my 4th

> grader, he has two friends with severe egg allergies that he's

known

> since 1st grade. He was just added to the " check the food list "

group

> and no one found it unusual.

>

> High school is a little more interesting. My son is responsible for

> himself. That first year there were many mistakes. Since he would

get a

> migraine along with DH and stomach pains, he'd be at the nurse's

within

> a short time of being glutened (he was worse about policing

himself than

> the younger kids at first. He has definitely learned his lesson,

> though!) The nurse and I ended up being pretty familiar with one

> another, to the point where she would subtly let me know that she

> thought he was using the celiacs claim to avoid something (which,

> honestly, he did.) However, the second year of being GF, he was not

> willing to chance any kind of contamination and have to miss

school, so

> he's been very careful and only a couple times went to the nurse.

>

> I personally don't feel the IEPs and 504s are necessary for kids

with

> celiacs. Teachers now are made to attend instructions on what to

do in

> cases of allergy kids so they are more aware than before of

potential

> dangers. Also, imo, it is the person's responsibility (whether

child or

> adult, and a five year old is definitely old enough to start

learning)

> to make appropriate food choices for themselves. How else can you

ever

> be comfortable letting them go anywhere without you? Yes, there

will be

> mistakes. Yes, they'll miss school. As an elementary student, it's

not

> going to be the end of the world if they miss 10-20 days (as mine

did

> their first gf year.) Speak with the teachers and the nurse. Be

> EXTREMELY pleasant and just assume cooperation and I'll bet, 9

times out

> of 10, you'll get it. Teachers especially like the nice, helpful

( " I'd

> LOVE to help with the sculpting art project/spring cookie

party/snack

> supply/ANYTHING, " lol) non-nagging, non-demanding parents. And if

> you're being sweet as candy, they'll be less likely to be annoyed

by you

> and more likely to help when your child misses too much and needs

extra

> help.

>

>

>

> > >

> > > Lauretta

> > > Have you thought of homeschooling your son?

> > > With all the horror stories I've heard from other parents of

celiacs

> and

> > > the public

> > > (and sometimes private) schools, it's just another reason for

me to

> keep

> > > my kids

> > > home.

> > > Jodanne

> > >

> > >

>

[Guest guest]

I totally agree with a. Being a public school teacher myself and

a parent of a celiac 4 year old, I don't think I will go the route

of the 504 plan when she gets to kindergarten next year. I have

found just through her preschool teacher that working with the

teacher individually is the best route. I know my daughter will

come into contact with more teachers/adults in elementary school so

I will have to expand who I have to inform about her celiac and the

do and the don'ts involved. It is not that I don't want to label my

daughter, I just think that it is better to try to go the personal

route and then if that doesn't work then do a 504. But even if you

do a 504 as a parent you must be responsible to make sure the

school is reminded (in a nice way ) about it at the beginning of

each school year. Schools are so inundated with paperwork now that

as a parent you must make sure the school knows immediately at the

beginning of each year. I'm not trying to make excuses for the

schools but it is just reality.

It makes me sad when people give up and go to homeschooling because

of problems they have had dealing with school personnel. There are

many, many, many caring teachers out there. I'm so sorry that so

many of you have had negative experiences with schools regarding

celiac.

In SillyYaks , " aPRS " wrote:

>

>

> I read all the trouble people go through with their kids and

school, but

> I've had the opposite situation. I didn't bother with the IEP or

504,

> though I thought about it. Turns out kids with severe

egg/peanut/etc.,

> allergies can't get these as they are allergies an not autoimmune

> disorders. Lucky us? Lol! Anyway, I have three, at the time of

diagnosis

> they were going in 10th, 4th and 1st.

>

> For elementary school, I spoke with the nurse and the teachers. The

> nurse has been wonderfully helpful, even giving me freezer space

for gf

> cupcakes for all those unannounced birthday surprises. The

teachers were

> helpful, but unless it was easily identifiable (food) they didn't

really

> get it. I don't think going by way of an IEP or whatever would

change

> this situation. For instance, my 1st grader was severely glutened

from

> an art project. That first year the kids were home quite a bit, but

> because the nurse knew the situation, it was NEVER a problem.

Also, both

> of my younger kids are very self-sufficient about policing their

foods.

> They would eat nothing rather than chance being glutened, even if

it's a

> party and someone tells them it's okay (how many times have we

heard,

> " there's no wheat in it, it just has flour... " *SIGH*) With my 4th

> grader, he has two friends with severe egg allergies that he's

known

> since 1st grade. He was just added to the " check the food list "

group

> and no one found it unusual.

>

> High school is a little more interesting. My son is responsible for

> himself. That first year there were many mistakes. Since he would

get a

> migraine along with DH and stomach pains, he'd be at the nurse's

within

> a short time of being glutened (he was worse about policing

himself than

> the younger kids at first. He has definitely learned his lesson,

> though!) The nurse and I ended up being pretty familiar with one

> another, to the point where she would subtly let me know that she

> thought he was using the celiacs claim to avoid something (which,

> honestly, he did.) However, the second year of being GF, he was not

> willing to chance any kind of contamination and have to miss

school, so

> he's been very careful and only a couple times went to the nurse.

>

> I personally don't feel the IEPs and 504s are necessary for kids

with

> celiacs. Teachers now are made to attend instructions on what to

do in

> cases of allergy kids so they are more aware than before of

potential

> dangers. Also, imo, it is the person's responsibility (whether

child or

> adult, and a five year old is definitely old enough to start

learning)

> to make appropriate food choices for themselves. How else can you

ever

> be comfortable letting them go anywhere without you? Yes, there

will be

> mistakes. Yes, they'll miss school. As an elementary student, it's

not

> going to be the end of the world if they miss 10-20 days (as mine

did

> their first gf year.) Speak with the teachers and the nurse. Be

> EXTREMELY pleasant and just assume cooperation and I'll bet, 9

times out

> of 10, you'll get it. Teachers especially like the nice, helpful

( " I'd

> LOVE to help with the sculpting art project/spring cookie

party/snack

> supply/ANYTHING, " lol) non-nagging, non-demanding parents. And if

> you're being sweet as candy, they'll be less likely to be annoyed

by you

> and more likely to help when your child misses too much and needs

extra

> help.

>

>

>

> > >

> > > Lauretta

> > > Have you thought of homeschooling your son?

> > > With all the horror stories I've heard from other parents of

celiacs

> and

> > > the public

> > > (and sometimes private) schools, it's just another reason for

me to

> keep

> > > my kids

> > > home.

> > > Jodanne

> > >

> > >

>

[Guest guest]

I agree that the best line of defense for a celiac child entering

public school is to get to know your child's teacher and

nurse/health tech who will be around on a day-to-day basis. (Our

school system has one nurse who works with several schools in a

cluster but the health tech is on-site every day.) We do not have a

504, and (so far!) things have worked out fine.

While we had a frustrating go of it initially (principal wouldn't

return our calls, wouldn't meet with us, etc), here are some things

that helped us:

1) Get a letter from your doctor to document the condition.

Our pediatrician wrote up a letter on office stationary (which was

an adapted version of what is available at

http://www.csaceliacs.org/SchoolMaterial/Teacher.php), and we hand-

delivered copies to our son's teacher, the nurse, and the principal,

along with photocopied materials with general information on celiac

disease.

2) Meet with your child's teacher before school starts.

If you have the time to do it, a face-to-face meeting goes long way

toward fostering cooperation and communication. In our system, the

teachers have to be at school the week before classes officially

begin, and that's when we had a meeting with the teacher. Having the

opportunity to sit down, explain the situation, and offer

suggestions/solutions to possible problems was incredibly beneficial

for both parties. I could clarify what could be a potential issue

(birthday parties, play dough, etc), and she could tell me how her

classroom operated so that we could avoid as many potential pitfalls

as possible. You might also want to schedule a meeting with the

teacher, the nurse, and the principal so that everyone is on the

same page. (We did this as a separate meeting and it was helpful.)

3) Bring in your snack bucket for the classroom and back-up treats

for parties BEFORE the first day of school.

That first day is crazy for everyone, and I think it really helps

the staff if you are already set before the bell rings. (We also

left Amy's frozen mac-and-cheese in the health room freezer as back-

up lunches in the event of a mishap.)

4) See if the staff might be willing to heat up a prepared GF lunch

for your child if you packed one.

In our case, the nurse and principal agreed that the health tech

could heat up a lunch for our son some days. We actually purchased a

small microwave for the health room (our offer, not a requirement

from the school!) and this has worked out REALLY well. While I don't

know if every school would be or could be open to this, it can't

hurt to ask.

Last year was our son's first year in public school, and it was a

smashing success. His teacher and the health tech were fabulous, and

I think that taking the time in that week before classes really made

a difference in how everyone approached the situation. We already

have tentative plans to meet with our son's 1st grade teacher before

classes begin this year, and we'll check in with the Health Tech and

the office just to make sure that all is well. While I can TOTALLY

relate to those who have been having problems with the school, I

think a's suggestions and those from [ " H. Ochoa " ] are

good ones and can really make the transition easier.

Deb Z.

[Guest guest]

I agree that the best line of defense for a celiac child entering

public school is to get to know your child's teacher and

nurse/health tech who will be around on a day-to-day basis. (Our

school system has one nurse who works with several schools in a

cluster but the health tech is on-site every day.) We do not have a

504, and (so far!) things have worked out fine.

While we had a frustrating go of it initially (principal wouldn't

return our calls, wouldn't meet with us, etc), here are some things

that helped us:

1) Get a letter from your doctor to document the condition.

Our pediatrician wrote up a letter on office stationary (which was

an adapted version of what is available at

http://www.csaceliacs.org/SchoolMaterial/Teacher.php), and we hand-

delivered copies to our son's teacher, the nurse, and the principal,

along with photocopied materials with general information on celiac

disease.

2) Meet with your child's teacher before school starts.

If you have the time to do it, a face-to-face meeting goes long way

toward fostering cooperation and communication. In our system, the

teachers have to be at school the week before classes officially

begin, and that's when we had a meeting with the teacher. Having the

opportunity to sit down, explain the situation, and offer

suggestions/solutions to possible problems was incredibly beneficial

for both parties. I could clarify what could be a potential issue

(birthday parties, play dough, etc), and she could tell me how her

classroom operated so that we could avoid as many potential pitfalls

as possible. You might also want to schedule a meeting with the

teacher, the nurse, and the principal so that everyone is on the

same page. (We did this as a separate meeting and it was helpful.)

3) Bring in your snack bucket for the classroom and back-up treats

for parties BEFORE the first day of school.

That first day is crazy for everyone, and I think it really helps

the staff if you are already set before the bell rings. (We also

left Amy's frozen mac-and-cheese in the health room freezer as back-

up lunches in the event of a mishap.)

4) See if the staff might be willing to heat up a prepared GF lunch

for your child if you packed one.

In our case, the nurse and principal agreed that the health tech

could heat up a lunch for our son some days. We actually purchased a

small microwave for the health room (our offer, not a requirement

from the school!) and this has worked out REALLY well. While I don't

know if every school would be or could be open to this, it can't

hurt to ask.

Last year was our son's first year in public school, and it was a

smashing success. His teacher and the health tech were fabulous, and

I think that taking the time in that week before classes really made

a difference in how everyone approached the situation. We already

have tentative plans to meet with our son's 1st grade teacher before

classes begin this year, and we'll check in with the Health Tech and

the office just to make sure that all is well. While I can TOTALLY

relate to those who have been having problems with the school, I

think a's suggestions and those from [ " H. Ochoa " ] are

good ones and can really make the transition easier.

Deb Z.