Jump to content
  • Sign Up
SarahJ921

7 Year Old Recently Diagnosed/ 504 Plan

Rate this topic

Recommended Posts

My 7 year old was diagnosed about 6 weeks ago with Celiac. It has been a life changing event to say the least but we are happy to finally have a reason for all the GI issues he's had since about a year old. With that being said I'm looking into having a 504 Plan developed at his new school (we moved right after the diagnosis). I' want to make sure my child is protected at school since it seems a lot of people don't know a lot about Celiac. If you have any advice as to how to approach the issue and what should be included in the 504 Plan I would appreciate any help you can give me.

Share this post


Link to post
Share on other sites

I'm an elementary teacher and help develop plans very often. What type of accommodations are you looking for?

If it were my child, with knowing how tough celiac can be, I'd ask for extended time at the least. Just for those days when he's feeling bad.

Does he have ADD/ADHD tendencies? Reading or math difficulties? Did he have prior services or accommodations?

Knowing a little background info on him would help.

Share this post


Link to post
Share on other sites

He definitely has some ADD/ADHD tendencies. He's advanced in both Reading (4th grade level) and in math. He didn't have any prior services or accommodations as he had just been diagnosed at the end of the school year. I had spoken with his teacher about the ADD/ADHD concerns earlier in the year but she didn't seem concerned and blew me off about it. 

 

 

I'm an elementary teacher and help develop plans very often. What type of accommodations are you looking for?

If it were my child, with knowing how tough celiac can be, I'd ask for extended time at the least. Just for those days when he's feeling bad.

Does he have ADD/ADHD tendencies? Reading or math difficulties? Did he have prior services or accommodations?

Knowing a little background info on him would help.

Share this post


Link to post
Share on other sites

Be sure to ask that he be able to make up work when he is sick.  My son's school's teachers all presented a "one day to make up for each day sick" plan for all students.  He was a good student as was able to keep up with that plan so we didn't ask for more.  Then he had an extended absence.   The administrators decided he had missed too many days and he got a "zero for any missed days" plan.  That got him kicked out of all his advanced courses.   I think that they were trying to force him to attend even when sick for tax reasons.  When he's too sick, he's too sick, taxes or not.  That was unfair.  Now he's making up for that in community college.

Share this post


Link to post
Share on other sites

We mostly look to see if his work is affected, or will be affected. I come from an extremely low SES (social economic status) school and we have tons of kids with deficits. So our process is more lenient than others I've heard of.

Because he's ADHD, it helps, but that he's advanced, hurts the process. I'd ask for him to be qualified as OHI (other health impairments) which means cognitively, he's on point, but his health may cause a disruption in his learning. I'd demand extended time because brain fog could hit him unexpectedly or he could get sick at school and slow down.

If the teacher isn't hearing you out, set up a meeting without the teacher with the principal. Have a note from the dr with his diagnosis and be prepared to tell him/her about what celiac is and how it affects him daily. OHI would be the easiest to attain in 504, I believe.

Share this post


Link to post
Share on other sites

Some of our accommodations in our 504 pertaining to my DS's Celiac disease are:

 

-Absolutely NO food that isn't from home.

-He sits at a desk at the end of the lunch table that is cleaned with a fresh towel and water before he enters the cafeteria

-Access to the bathroom as needed

-Vetting of art/craft supplies

-No food used in lessons or as class rewards

-I am present at all class parties (was room Mom before we went to a whole school policy WRT food at parties)

 

Those are all that I can think of. We have many others but they are for life threatening allergies and not Celiac. 

Share this post


Link to post
Share on other sites

I have a working 504 for my oldest (3rd grade) and my youngest (pre-school that runs through our school district) - both are for celiac as the girls have no learning issues.

 

Number one thing - find out who your 504 liaison at your school and request a meeting *in writing/email* RIGHT NOW!  It will take time to pull together their team and you can get all this done before school starts.  Our team: Principal/VP, nurse, counselor, Medical Services Head (the person at the district that processes all these), classroom teacher.

 

I'll just go over the oldest's plan since the pre-school stuff won't matter to you. :)

* use of bathroom without restriction (which means that nobody can ask her to wait - if she asks then she can walk out)

* teachers (including specials) need to notify parents of all food, art supplies, etc (it's on me to contact them and ask)

* she has a "special" treat box for teacher to use for rewards, birthday parties, etc (all provided by me)

* allowed time to wash hands (no hand sanitizer) without restriction

* Chlorox wipes to be used to keep desk clean

* goes to cafeteria a minute early and Chlorox wipes down her seating place (we have other protocol, but this is the one in the plan)

* parent provided shelf-stable lunches (Go Picnic) left in the nurse's office in case lunch is forgotton that day - I think there were three boxes

 

She was DX in 10/2013 and hasn't been glutened at school.  Luckily, she's not the only kid in her grade with food restrictions so the other kids don't pay any attention to her being "different" with these items.

*

Share this post


Link to post
Share on other sites

I am new to this whole celiac thing and my daughter was just diagnosed at the end of this last year.  Can someone explain to me what 504 means and if I should worry about not having one and needing one?  My daughter is going into 6th grade next year and we send all food from home for her.  I guess I never thought much past that.  She doesn't have any digestive issues so far, just fainting but that hasn't happened since her diagnosis.  Sometimes I feel like such a dunce because I am not thinking of things I am supposed to when I should know all this.  I guess never knowing I had celiac at a school age, I am not thinking of everything. 

Share this post


Link to post
Share on other sites

Beth,  504 is the section of the Americans with Disabilities act that relates to schooling and providing free and appropriate educations to ALL students inclusive of any disabilities, Celiac being seen as on for this case. They provide accommodations for students that the school is LEGALLY required to follow.  If you haven't had one, you may not need it BUT there are those who believe all kids should esp. for when they enter college (there are bigger issues like freshmen begin forced to live in a dorm with no kitchen, a 504 MAY let them live off campus and things like that).  Also, 504's are only good for public schools too so if she's in a private school they won't do one.  

 

That's my 2 minute 504 line.  Making dinner! lol

Share this post


Link to post
Share on other sites

I just registered him at his new school today and let them know of my concerns. I have a meeting with the school nurse tomorrow. The people in the office seemed a bit concerned and spoke with the nurse who wanted to speak with me as soon as possible. We will see how things go tomorrow. 

Share this post


Link to post
Share on other sites

After Labor Day. We just moved here a week ago and I just got all the paperwork I needed to register him (the school district required 3 different items for proof of residency). We should have been here 3 weeks ago but the military had other plans and our move kept getting delayed. 

 

 

Great start. :)

 

When does school start?  (I ask because ours starts the second week of August - uber early)  Our whole plan from first request to active 504 was about four months.

Share this post


Link to post
Share on other sites

Great start. :)

 

When does school start?  (I ask because ours starts the second week of August - uber early)  Our whole plan from first request to active 504 was about four months.

 

4 months?  Wow. That seems unreasonably long to me!  

 

Sarah,I hope your meeting with the nurse goes well! Let us know if we can help in any way!

Share this post


Link to post
Share on other sites

The meeting went well. There is actually a staff member at the school who has Celiac so they are a little familiar with it. I mentioned to the nurse that I wanted to pursue the 504 plan the keep me at ease and to my child and she was Ok with that. I have to wait for a meeting with the assistant principal now and that might be a couple weeks as the nurse will be going out of town. I'm just glad they are willing to work with me.  

 

 

4 months?  Wow. That seems unreasonably long to me!  

 

Sarah,I hope your meeting with the nurse goes well! Let us know if we can help in any way!

Share this post


Link to post
Share on other sites

4 months?  Wow. That seems unreasonably long to me!  

Our first meeting ended up being a snow day.  Then our second meeting was a snow day (we had a crazy, crazy level of snow this year).  Then the nurse had her cancer come back and ended up taking the rest of the school year off.  So I called and got the substitute nurse - who had no idea what to do so she called her boss and that stream-lined the process.  It was all just life stuff that tangled the process.

 

Sarah - now that you asked they should be putting together the whole team.  When you hear of the meeting date find out who else will be there.  Then have a written list of all the accommodations you're requesting and give everybody at the meeting a copy.  That way you can go point by point.  I will say that not one person argued with any of my points and actually came up with others that I hadn't requested.  It's one of those things that helps to have many heads in the room.

Share this post


Link to post
Share on other sites

Thank you. I was going to go in with a list of accommodations. After talking with a nurse it seems as though they were going to do some of the things I was planning on asking for but I guess it would make me feel better if it were "official".  

 

 

Our first meeting ended up being a snow day.  Then our second meeting was a snow day (we had a crazy, crazy level of snow this year).  Then the nurse had her cancer come back and ended up taking the rest of the school year off.  So I called and got the substitute nurse - who had no idea what to do so she called her boss and that stream-lined the process.  It was all just life stuff that tangled the process.

 

Sarah - now that you asked they should be putting together the whole team.  When you hear of the meeting date find out who else will be there.  Then have a written list of all the accommodations you're requesting and give everybody at the meeting a copy.  That way you can go point by point.  I will say that not one person argued with any of my points and actually came up with others that I hadn't requested.  It's one of those things that helps to have many heads in the room.

Share this post


Link to post
Share on other sites

Here's what is in our 504 plan for Joe.  He is entering 4th grade.  I just recently added the shelter in place part (after the ice storm in Atlanta stranded kids at school overnight . . . could happen here I guess).    When he reaches middle school age, we will request he not share a locker (no chance of someone else's crumbs being around) but I can't think of much else . . .

 

We did have an issue once where he didn't have a lunch to eat . . . he didn't forget his lunch, his water bottle leaked and got everything wet and he didn't want to eat it.  Having an extra lunch available (Go Picnic is great) is helpful.

 

If your child is eating meals provided by the school, additional items should be added to the plan, like staff training to prevent cross contamination, etc.

 

 

 

 

Information for 504 Plan for Celiac Disease

Joseph Xxxxxx

 

Date of diagnosis:  March 2011

Amount of time on a gluten-free diet:  3 years

 

OVERVIEW OF CELIAC DISEASE

Celiac disease is an autoimmune disorder that damages the small intestine and interferes with proper absorption of nutrients. People who suffer from celiac disease cannot tolerate the protein gluten found in wheat, barley, rye and most oats. Gluten is widely used in processed foods and can be difficult to detect by just reading the label. In addition, there are some hidden sources of gluten both in food and in unusual items such as art supplies and postage stamps.

 

TREATMENT

Celiac disease is not an allergy. Exposure to gluten does not cause anaphylactic reactions. An Epi-pen or other medical intervention is not needed. The only treatment is life-long adherence to a 100% gluten free diet. Even small amounts of gluten (due to cross-contamination of eating surfaces or cooking equipment) will make Joe ill and trigger an autoimmune response.

 

Joe should only eat food that is:

·      brought from home.

·      in a sealed package that is clearly labeled “gluten free”

·      previously determined to be safe (he will recognize)

·      approved by parents (just give us a call)

 

SYMPTOMS / SIGNS OF INGESTION

There are a variety of symptoms that children may display when exposed to gluten.  The symptoms can change over time so we are not really sure what to expect.  In the past, Joe has developed gastrointestinal (GI) upset manifested by vomiting, diarrhea, gas, and bloating.  A stomachache, headache, and/or achy joints have also occurred.  He has also had behavioral symptoms such as irritability, inability to concentrate, restlessness, or sleepiness. Symptoms can come on suddenly or occur a few days after ingestion. Symptoms can continue for several days or even weeks after ingestion.

 

ATTENDANCE / ABSENCES

In the event that Joe accidently ingests gluten, he may be absent from school for several days.  Teachers will work with parents to ensure he keeps up with his schoolwork while at home, if possible.

 

MEALS AND SNACKS

Joe will bring all meals from home.  There is no need at this time for the BPS food service staff to be involved.

 

The teacher supervising the lunchroom should remind Joe to wash his hands with soap and running water prior to eating.

 

To avoid cross-contamination from the table surface, Joe should be reminded to use the placemat provided.  When a plastic placemat is not available, a paper towel or napkin can be used.

 

BATHROOM ACCESS

Joe should be allowed bathroom privileges whenever necessary and without negative consequences. 

 

It would be helpful to establish a “signal” to alert the teacher when there might be an emergency that would require him leaving the classroom immediately without waiting for permission.

 

CLASSROOM PROJECTS / ACTIVITIES

Products commonly used in the art room will be reviewed to determine that they are gluten free.

 

The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.

 

Joe will be excused from activities that involve working with wheat flour as it can become airborne and settle on all surfaces including in his hair and clothes.

 

All classroom surfaces will be thoroughly cleaned after being exposed to wheat flour.

 

Teachers will require Joe to wash his hands after handling known gluten-containing products (playdough, papier mache, etc.)

 

CLASSROOM CELEBRATIONS / REWARDS

A box of snacks and treats is provided by the family and is to be kept in the classroom. Teachers will notify the parents when the snacks need to be replenished.  An additional meal  (Go Picnic) will also be stored with the snacks/treats in the event that Joe forgets his lunch or his lunch is somehow inedible.

 

Teachers will give the parents 24 hours notice of any special events that involve food so that a safe alternative can be provided.

 

FIELD TRIPS / EXTRACURRICULAR ACTIVITIES

Teachers will communicate to the parents if food will be provided as part of field trip.

 

Parents will determine whether food is gluten free and/or provide student with a safe alternative.

 

Parents will have the option of keeping a child home if no provisions can be made without penalty to the student.

 

 

COMMUNICATION

School staff that have regular contact with Joe should be aware of his condition and trained to recognize any signs or symptoms that might indicate a possible accidental or known exposure to gluten.  Joe’s #1 symptom is a drastic change in behavior, so anything unusual should be noted and shared with the parents.

 

The school will insure communication systems are in place to inform persons who need to know  (i.e. substitute teachers.)

 

The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.

 

If Joe inadvertently ingests gluten, his parents should be notified as soon as possible.

 

Staff will be aware of food “bullying” and notify administration and parents if it occurs or is reported.  Reported incidents will be handled in accordance with the BPS Anti-bullying policies. 

 

EMERGENCY EVACUATIONS / SHELTER IN PLACE

The school evacuation plan will be reviewed to see if provisions need to be included to accommodate Joe’s diet restrictions.

 

Shelf stable meals/snacks will be provided by the family and stored in the classroom in the event that students need to shelter in place for an extended period of time.  Food will be returned to the family at the conclusion of the school year.

 

CONTACT INFORMATION:

 

Mother:          Cara Xxxxxx           H)  xxx-xxx-xxxx  C)  xxx-xxx-xxxx

Father:           Paul Xxxxxx           W)  xxx-xxx-xxxx  C)  xxx-xxx-xxxx

 

Regular Pediatrician: 

Dr. Andrea Reilley, MGH Back Bay

388 Commonwealth Avenue

Boston, MA 02215

617-267-7171

 

Gastroenterologist / Celiac Specialist:

Dr. Dascha Weir, Children’s Hospital Boston

300 Longwood Avenue

Boston, MA 02115

617-355-6058

Share this post


Link to post
Share on other sites

Thanks for showing me what your's looks like. It definitely helps to see.

 

On a different note...We actually used to see the same GI doctor as you before we moved. 

 

 

Here's what is in our 504 plan for Joe.  He is entering 4th grade.  I just recently added the shelter in place part (after the ice storm in Atlanta stranded kids at school overnight . . . could happen here I guess).    When he reaches middle school age, we will request he not share a locker (no chance of someone else's crumbs being around) but I can't think of much else . . .

 

We did have an issue once where he didn't have a lunch to eat . . . he didn't forget his lunch, his water bottle leaked and got everything wet and he didn't want to eat it.  Having an extra lunch available (Go Picnic is great) is helpful.

 

If your child is eating meals provided by the school, additional items should be added to the plan, like staff training to prevent cross contamination, etc.

 

 

 

 

Information for 504 Plan for Celiac Disease

Joseph Xxxxxx

 

Date of diagnosis:  March 2011

Amount of time on a gluten-free diet:  3 years

 

OVERVIEW OF CELIAC DISEASE

Celiac disease is an autoimmune disorder that damages the small intestine and interferes with proper absorption of nutrients. People who suffer from celiac disease cannot tolerate the protein gluten found in wheat, barley, rye and most oats. Gluten is widely used in processed foods and can be difficult to detect by just reading the label. In addition, there are some hidden sources of gluten both in food and in unusual items such as art supplies and postage stamps.

 

TREATMENT

Celiac disease is not an allergy. Exposure to gluten does not cause anaphylactic reactions. An Epi-pen or other medical intervention is not needed. The only treatment is life-long adherence to a 100% gluten free diet. Even small amounts of gluten (due to cross-contamination of eating surfaces or cooking equipment) will make Joe ill and trigger an autoimmune response.

 

Joe should only eat food that is:

·      brought from home.

·      in a sealed package that is clearly labeled “gluten free”

·      previously determined to be safe (he will recognize)

·      approved by parents (just give us a call)

 

SYMPTOMS / SIGNS OF INGESTION

There are a variety of symptoms that children may display when exposed to gluten.  The symptoms can change over time so we are not really sure what to expect.  In the past, Joe has developed gastrointestinal (GI) upset manifested by vomiting, diarrhea, gas, and bloating.  A stomachache, headache, and/or achy joints have also occurred.  He has also had behavioral symptoms such as irritability, inability to concentrate, restlessness, or sleepiness. Symptoms can come on suddenly or occur a few days after ingestion. Symptoms can continue for several days or even weeks after ingestion.

 

ATTENDANCE / ABSENCES

In the event that Joe accidently ingests gluten, he may be absent from school for several days.  Teachers will work with parents to ensure he keeps up with his schoolwork while at home, if possible.

 

MEALS AND SNACKS

Joe will bring all meals from home.  There is no need at this time for the BPS food service staff to be involved.

 

The teacher supervising the lunchroom should remind Joe to wash his hands with soap and running water prior to eating.

 

To avoid cross-contamination from the table surface, Joe should be reminded to use the placemat provided.  When a plastic placemat is not available, a paper towel or napkin can be used.

 

BATHROOM ACCESS

Joe should be allowed bathroom privileges whenever necessary and without negative consequences. 

 

It would be helpful to establish a “signal” to alert the teacher when there might be an emergency that would require him leaving the classroom immediately without waiting for permission.

 

CLASSROOM PROJECTS / ACTIVITIES

Products commonly used in the art room will be reviewed to determine that they are gluten free.

 

The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.

 

Joe will be excused from activities that involve working with wheat flour as it can become airborne and settle on all surfaces including in his hair and clothes.

 

All classroom surfaces will be thoroughly cleaned after being exposed to wheat flour.

 

Teachers will require Joe to wash his hands after handling known gluten-containing products (playdough, papier mache, etc.)

 

CLASSROOM CELEBRATIONS / REWARDS

A box of snacks and treats is provided by the family and is to be kept in the classroom. Teachers will notify the parents when the snacks need to be replenished.  An additional meal  (Go Picnic) will also be stored with the snacks/treats in the event that Joe forgets his lunch or his lunch is somehow inedible.

 

Teachers will give the parents 24 hours notice of any special events that involve food so that a safe alternative can be provided.

 

FIELD TRIPS / EXTRACURRICULAR ACTIVITIES

Teachers will communicate to the parents if food will be provided as part of field trip.

 

Parents will determine whether food is gluten free and/or provide student with a safe alternative.

 

Parents will have the option of keeping a child home if no provisions can be made without penalty to the student.

 

 

COMMUNICATION

School staff that have regular contact with Joe should be aware of his condition and trained to recognize any signs or symptoms that might indicate a possible accidental or known exposure to gluten.  Joe’s #1 symptom is a drastic change in behavior, so anything unusual should be noted and shared with the parents.

 

The school will insure communication systems are in place to inform persons who need to know  (i.e. substitute teachers.)

 

The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.

 

If Joe inadvertently ingests gluten, his parents should be notified as soon as possible.

 

Staff will be aware of food “bullying” and notify administration and parents if it occurs or is reported.  Reported incidents will be handled in accordance with the BPS Anti-bullying policies. 

 

EMERGENCY EVACUATIONS / SHELTER IN PLACE

The school evacuation plan will be reviewed to see if provisions need to be included to accommodate Joe’s diet restrictions.

 

Shelf stable meals/snacks will be provided by the family and stored in the classroom in the event that students need to shelter in place for an extended period of time.  Food will be returned to the family at the conclusion of the school year.

 

CONTACT INFORMATION:

 

Mother:          Cara Xxxxxx           H)  xxx-xxx-xxxx  C)  xxx-xxx-xxxx

Father:           Paul Xxxxxx           W)  xxx-xxx-xxxx  C)  xxx-xxx-xxxx

 

Regular Pediatrician: 

Dr. Andrea Reilley, MGH Back Bay

388 Commonwealth Avenue

Boston, MA 02215

617-267-7171

 

Gastroenterologist / Celiac Specialist:

Dr. Dascha Weir, Children’s Hospital Boston

300 Longwood Avenue

Boston, MA 02115

617-355-6058

 

Share this post


Link to post
Share on other sites

Cara made a good point about keeping extra Go Packs in case of an emergency. Our school keeps three there in case of a forgotten lunch, but if school had a huge ice storm they would be screwed - food isn't prepared in our cafeteria so NONE of the kids could eat. Our school is in the middle of a neighborhood, though, so I can rattle off a handful of moms within walking distance that could provide something safe for her.

So go in with your list of requests but know each school has its own systems in place. For example, our nurse keeps extra food in her office. We also have considerable allergies in the school so EVERY treat option is run through her for approval. I seriously love that system to take it out of the teachers' hands.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...