There’s so very much that led up to today…

Like this post in October of 2008…and this post and this post from November of 2009, to share a few…

…but if you’d like the reader’s digest version, our daughter Gillian is the first in our school system to be diagnosed with Celiac Disease (detailed description of Celiac below), and we’ve had quite the time getting her legal protection via a 504.

As of today, we’ve signed off on the document, and got everything we fought for. The only thing I needed to let go of was the gluten-free class parties, which we’ve worked out seamlessly with the nurse, teacher and class parents for two years now.

So I’ll share the 504 with you, below. If you live in the US, you’re legally entitled to everything on it for your school-aged child with Celiac. The cherry on the sundae, though, was getting the school system to train and provide hot lunches every day for her (for which we’ll pay the same as every other child in our district, $2.25). We had trouble getting them to agree to this (we were told that they didn’t see this as a necessity), until I told them that, according to the Food & Drug Administration in Washington, DC, schools have to accommodate under 504 by preparing and serving at least one SAFE meal per day to the student (this goes for kids with 504s with food allergies as well, and there are lots of them in our district).  This means safe hot dogs, hamburgers, etc (whatever is formulated in 504 plan) and prepared in separate area of the cafeteria with separate utensils. Either they weren’t aware of this, or they didn’t think I’d know, but I’ve had almost 3 years to do my homework. We had also consulted a lawyer, and perhaps it’s my imagination, but after I said the phrase “Our lawyer has advised us that…” in conversation with them, things seemed to go more smoothly.

To be fair, although this has dragged on way too long and I’ve had to push for every inch we’ve gotten, the staff has been polite and professional to us throughout the process.  We also know for a fact that they found this web site in the online research they’ve needed to do (as I said, we’re the first in the district with a Celiac 504) to prepare their end of this document. We’ve got a good friend who hears everything in the PTO, and there have been no rumors passed about our religion, for which I am eternally grateful. I was very, very concerned about this at first, and am relived to find I appear to be wrong about being outed to the community at large.

Back to school lunches – Gillian couldn’t be more excited! She’s been living on cold ham slices and peanut butter with gluten-free crackers for years now. The nutritionist that works with the catering company that supplies our school system has prepared a menu providing her with a different balanced meal each day of the school week, and although the same menu currently repeats itself weekly, she’s looking for other food I’ve recommended to her, such as fish sticks and pancakes. The best part is that her menu dovetails with the regular school menu, so she’s eating the same type of food as the rest of her class – only much more nutritious, since gluten free food is a lot more expensive and held to much higher standards of production and quality than the food normally served in a school cafeteria. She begins buying lunch this coming Tuesday!

Here’s the current weekly menu they sent me to sign:

Okay, no on to the 504. The biggest argument we had from the school was the determination of whether or not Celiac falls under the Rehabilitation act of 1973. Here’s the proof that it does:

The Department of Education (ED) Office of Civil Rights regulations define a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine… The regulations do not spell out every disease and condition that may constitute physical or mental impairments [which leaves room for Celiac to be included]. Section 504(a) of the Rehabilitation Act of 1973, as amended, 34 C.F.R. 104.3(j)(2)(i) and the Americans with Disabilities Amendments Act of 2008 (ADAAA), Title II regulation at 28 C.F.R. § 35.104.

Here’s the Accommodation Plan section of her 504. If you’re the parent of a Celiac kid, please feel free to use this as a guideline in researching what your child is entitled to.

SECTION 504 OF THE REHABILITATION ACT OF 1973
ACCOMMODATION PLAN

• In the event of excessive trips to the restroom (out of the classroom for 3 hours) one hour of instruction will be provided. In the case of excessive absences (10 consecutive days with a prognosis of additional days absent) due to illness related to Celiac Disease, home instruction will be considered.

• General: All Staff members involved in the care and education of Gillian must receive training in the management of Celiac Disease. Each substitute school teacher and substitute school nurse will be provided with written instructions regarding Gillian’s Celiac Disease plan of care. Benedryl will be kept in the Nurse’s office and will be made available to Gillian should accidental exposure occur, as hives can appear when cross contamination occurs.

• Classroom: Teachers will give Gillian’s parents a 48-hour notice of any special events outside the classroom at which food will be prepared that is not from the cafeteria. Snacks will be available in the classroom, or Gillian’s backpack, or the nurse’s office (whichever is deemed the most viable) in the event that she becomes hungry. If the school is providing food for the students, gluten free food will be provided by the school for Gillian.

• Cafeteria: The school will designate a person to be responsible for ensuring that lunch tables and surrounding areas are thoroughly cleaned before lunch with a dedicated container of wipes. The cafeteria will continue to have gluten-free foods available for lunch.

• Gluten free lunch options will be made available to Gillian on a daily basis. The appropriate health measures will be executed by the Maschio staff after training by their supervisor.

• Bathroom: Gillian shall be permitted to use the bathroom without restriction. If she deems it necessary, she will be permitted to use the bathroom in the nurse’s office in case of serious stomach cramping and cold sweats, so that she can be overseen by an adult.

• Art/Art Projects: Disposable gloves will be accessible to Gillian for projects that contain gluten such as play doh or paper-mâché. School projects utilizing glutinous ingredients which can become airborne (i.e. flour or paper-mâché dust) must be substituted with another project or gluten-free ingredients, such as gluten free flour. The staff should call Mrs. Cushing if they have any questions about projects that may include gluten.

• Field Trips: Parents will be notified of upcoming field trip plans that would involve food or food related activities. The school staff will provide reasonable notice to her parents when there will be a change in planned activities such as field trips or parties. If the school is providing food for the students, gluten free food will be provided by the school for Gillian.

• Parental Notification: Gillian’s parents should be notified immediately in the following situations:
*The student has eaten a food item that contains gluten
*The student has symptoms of gluten ingestion such as abdominal pain, cramping, diarrhea or hives.

• Emergency Situations: Gillian’s parents shall provide the school with a three day emergency supply of non-perishable gluten-free foods.

Medical History: Celiac disease is an autoimmune disease that causes damage to the intestinal lining, interfering with the absorption of nutrients. Untreated, Celiac disease causes multi-system complications such as diarrhea, constipation, gas, bloating, iron deficiency anemia, decreased bone density, failure to thrive, short stature, and behavior problems. The only treatment for Celiac disease is a strict gluten free diet for life. Gluten is found in wheat, rye, barley and contaminated oats. Therefore, all foods with wheat, rye, barley and oats must be eliminated from the diet. In addition to the foods being gluten free, it is equally important that these foods are not contaminated by coming in contact with gluten containing foods during their preparation or service. Celiac disease is an autoimmune disease that causes damage to the intestinal lining, interfering with the absorption of nutrients. Untreated, Celiac disease causes multi-system complications such as diarrhea, constipation, gas, bloating, iron deficiency anemia, decreased bone density, failure to thrive, short stature, and behavior problems. The only treatment for Celiac disease is a strict gluten free diet for life. Gluten is found in wheat, rye, barley and contaminated oats. Therefore, all foods with wheat, rye, barley and oats must be eliminated from the diet. In addition to the foods being gluten free, it is equally important that these foods are not contaminated by coming in contact with gluten containing foods during their preparation or service.

Celiac disease is a disorder that causes problems in your intestines when you eat gluten. Gluten damages the intestines of people with Celiac Disease. Once the damage occurs, patients with Celiac disease have difficulty absorbing vitamins, calcium, protein, carbohydrates, fats, and other important nutrients. This can lead to weight loss, malnutrition and anemia.

Gillian experienced very frequent stomach pain/Irritable Bowel type symptoms. Lack of growth for three years prior to diagnosis.

Diagnosed with Celiac Disease in 2007. Gillian continued to experience pain and irritable bowel symptoms throughout the second and third grade. She needed to spend a lot of time in the bathroom during the school day. She appears much improved in fourth grade. She takes no medications at this time – however, she must follow a strict gluten-free diet for the rest of her life.

Physical – No physical restrictions. Gillian is small in both height and weight when compared to her same aged peers. She has grown 4 ¼” and gained 12 pounds since being diagnosed.

Adaptive Behavior
Gillian is able to:
*monitor her diet and avoid eating foods that contain gluten
*wipe down her desk/table with a dedicated container of wipes
*inform the teacher that she needs to go to the nurse during a flare up of stomach pain

—– END DOCUMENT—

I’m so glad that it goes into effect tomorrow, when Matt and I sign off on it and return it to the school. What a relief to know that Gillian will have legal protection, and the school legal responsibility to keep her safe!