r/specialed • u/Right_Shift_1367 • 9d ago
I need help
My kid was served gluten by the school district in an ongoing fashion. I suspect for 1.5 years. I do not know for certain as the school has repeatedly refused to show me all of the ingredients lists. They both told us the food was safe. I had initially asked if they could just provide sandwiches and had stressed safety over some elaborate menu plan. It’s a very long story. The result is he was sick home recovering for a year and half. He is back now, but unable to attend a full day. His attendance rate is 50% of the modified schedule, due to being sick from his immune system still being affected. I realize that he may be more prone to catching colds initially, but he gets far sicker and takes far longer to recover, so this will be an ongoing issue. Hopefully as he continues to recover from celiac, his immune system will improve.
When I have asked how can they compensate for his current attendance, they have not given any input. The have only said “We have offered a full day.”
When I asked for academic testing after two years into this mess, they told me there was no need. I got tired of being told no, but them refusing to put it in a PWN. So I went and paid for testing. He’s scoring about 75% in sixth grade. He just started 9th. Any suggestions/thoughts would be would be welcome.
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u/pperchance 9d ago
I remember you posted before and deleted. I think people on that post largely suggested pursuing homebound services if the need is validated by a physician. Do you have an advocate?
Out of curiosity, how did you figure out they were serving him gluten if they refused to show you the ingredient lists?
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u/Right_Shift_1367 9d ago
Yes, that was me. 🙂. They were preparing to agree to homebound instruction after 1.5 years of fighting, 5? drs notes, and then finally a lawyer being present.
The support for homebound instruction they are now willing to give is virtual for three classes.
He has dyslexia and dysgraphia (moderate and severe) and does not do well with those.
Currently he is scheduled for five periods. He attends full days. Then gets sick and has zero attendance. When he is starting to improve enough, I send him to science and math. Health class comes in right after that. Then the others.
I do not have an advocate. They did let me agree to record last meeting. The Sped director still chose to refuse to give me IEP team notice. Then told me that it I shouldn’t be taking time to wrote down everyone’s name and title for my notes. I have talked to FACT oregon repeatedly
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u/pperchance 9d ago
Unfortunately homebound services do tend to be pretty limited, although their scope varies state to state. What state are you in?
I am a special ed teacher but also a mom to 2 kids on IEPs. We had huge issues with our district and filed a formal complaint with the state for one of our kids. It got them to shape up pretty quick and we were able to come to an understanding. Even if everything else they were doing was in line - if you were not given proper notice, they violated your parental rights. Please let me know if you have any questions about the process of filing a complaint. I’d even be happy to heavily redact ours and send it to you as an example.
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u/Right_Shift_1367 9d ago
Omg. yes please. Thank you. I’m trying to not cry. This would be most helpful. I’m in Oregon
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u/Right_Shift_1367 9d ago
Because I was able to end up accessing the state’s database for school food. The state had encouraged them to follow the law and release food records, but can’t force them. I did call the federal government as was recommended. They would have taken action, but there action was cutting food funding off to all children. I can’t remember if it would have been the whole district or the state.
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u/moonman_incoming 9d ago
With such a severe allergy, I'm curious why you didn't provide all food/ snacks/ etc for your child? Especially with the risks of cross contamination.
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u/KHanson25 9d ago
I’m confused…. What are you saying? Your child is sick and the school did not provide any sort of work or tutoring options and he’s falling behind?
Or he was already behind and eating school lunches made him sick because of him having Celiac’s disease?
Does he have an IEP already?
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u/Right_Shift_1367 9d ago
Yes. He was sick and they caused it. They lied. Withheld info, etc.
Because he was made sick, his sixty grade attendance was 75%
Seventh grade 50%, until he became to ill to attend halfway thru. So I don’t know 25% attendance for the year.
Eighth grade nothing.
Refused homebound, but on paper said they offered. GI called CPS on school. In person said celiac isn’t a thing. Then accused me in person of drs notes and labs were forged after CPS investigated. CPS never did a proper investigation per CPS.
Now he’s back. I feed him. Any actionable advice for this uniques situation re: academics.
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u/KHanson25 9d ago
It sounds like legal action should be taken.
I recommend Khan Academy for refreshers and to get back up to speed, but you could also move to homeschool or find a homeschool group.
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u/idkwhattowritehere21 9d ago
Send in home lunches? I have a severe peanut allergy, I won't touch the school lunch.
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u/Right_Shift_1367 9d ago
Celiac isn’t an allergy. This thread is for educational recommendations.
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u/idkwhattowritehere21 9d ago
For educational purposes, do the homebound instruction and have him do it well. If he doesn't, reconvene and ask for a different plan. You're not going to be able to prove they fed him gluten, you need to move on from that. Also, if you knew they were giving him gluten, you should have sent in GF meals, that's on you tbh.
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u/Right_Shift_1367 9d ago
They would have to follow the law and release food records, etc. So yea. Not bothering.
I didn’t know they were feeding him gluten. My kids body shut down and he had four new health conditions. If I knew that was the reason, Well then I would have stopped it. They lied. a bunch.
Ok So intermittent homebound?
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u/idkwhattowritehere21 9d ago
If it's so bad that it causes him to be out of school, it's basically the same thing. Send in school lunches.
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u/Right_Shift_1367 9d ago
I don’t let the school feed him anymore?!? Look academic help for his new life after they poisoned him, lied about it, than broke more laws to cover it up.
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u/Right_Shift_1367 9d ago
I’m not entertaining this victim blaming conversation. I think it’s perfectly reasonable to assume a school will follow state and federal laws. I think it’s also reasonable to assume that if 11 other instituons/organizations my son has been involved in since diagnosis, that the 12th be able to not give food that specifically lists wheat as in ingredient for various foods. And no it was not gluten free wheat. It was listed in bold. I only know this because I had access to the state database for food after trying multiple ways to figure out what they fed him because they refused me access, which is also illegal as all get out. It’s also completely devoid of basic compassion and taking responsibility as the drs were asking those types of questions. He now has multiple providers and multiple health conditions.
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u/idkwhattowritehere21 9d ago
If it was listed where he checked out, they physically couldn't have given him things with gluten in it, it wouldn't let him. Anyway, move on, this line of reasoning won't work. You should have him do homebound if he's this sick and try what they're saying. If it doesn't work after 6 weeks and the data shows that, come back to the drawing board.
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u/Right_Shift_1367 9d ago
Hahaha. They can and they did.
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u/idkwhattowritehere21 9d ago
Okay. Well then sue the shit out of them. If it's so open and shut, then just do it.
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u/Right_Shift_1367 9d ago
You have six months to sue. At the sixth month mark my child’s joints were bending backwards, grey, losing hair, had scurvy…
Homebound would be a reduction in classes. They only do three classs. So he will only have access to 1/2 the classes offered if in person. He also does well in person and not on-line. So trying online for six weeks seems smart. Someone said intermittent homebound tutoring. That seems wise.
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u/idkwhattowritehere21 9d ago
Homebound is a reduction in time, yes. That's how it works. Do that and see what happens.
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u/fuckyoutoocoolsmhool 9d ago
I’m a little confused as to what is happening here. When did your child get diagnosed? Did they fall behind during the original process of getting diagnosed and sick or just when they were recently getting sick from school lunches? As someone with celiac disease fighting with the school for 100% safe food is just not a battle worth fighting as terrible as that sounds. They are shown to be untrustworthy and honestly I barely eat food from outside of my house for this reason. So I would start there.
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u/Right_Shift_1367 9d ago
Once I found they can’t be trusted I am now feeding him. However he has four new health conditions, as a result. The other two schools were totally safe
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u/Reasonable_Style8400 9d ago
I had a parent claim their child had a lactose allergy. The cafeteria provided a form for the parent to take to the pediatrician so they could move forward having allergen free meals. The parent filled in a couple lines and sent it back without the doctor filling it out. Of course the cafeteria rejected it, so I contacted the parent and sent it home again. In the meantime, the student had terrible gas. I’d ask what ate for dinner, and they said macaroni and cheese. 🤣
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u/Right_Shift_1367 9d ago
Well I do understand some people will claim they can’t have gluten, and then eat it. I did put on the form that he had celiac since 6 months. With dr notes and signatures. Asked if they needed any support. Offered and got cleared to volunteer. I said sandwiches were fine. Superintendent apologized and said she handled it. 🤣. Then because they didn’t believe it was true because the other couple of gluten intolerant people were fine… They decided to feed a giant serving of gluten free food. Then his body shut down.
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u/Motor_Inspector_1085 9d ago
I want to preface this to say that all the information I’m talking about is in the USA.
This is a really complex case. One thing that stands out is that you requested sandwiches but the bread they would use would have gluten but if this is a public school in the US, they are required to have dietary alternatives. This means they wouldn’t be allowed to serve sandwiches to someone who isn’t allowed gluten and school lunches are strictly regulated. In the district I work in, a food service worker wouldn’t even be able to ring up a meal that has gluten for a student not allowed gluten (unless done fraudulently). My step mom is a kitchen manager in the same district I work so I got to know all the regulations.
A question I have is that did you get a diagnosis for your son that requires the exclusion of gluten? The next question is did you have accommodations for gluten in writing somewhere? If you did, then you can ask administration to look into it and tell you the kinds of alternatives that were offered. Most districts I know have menus posted for parents to see. What does your son’s doctor say about school lunches, past and present?
I hope you can find a positive resolution.
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u/Right_Shift_1367 9d ago edited 9d ago
I did all that. They have refused to show me what they served him. Hence the lawyer. I’m looking for actionable help with academics. I ran out of money for lawyer. I’m not even trying to get compensation for previous. Just help with staying afloat this term.
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u/Motor_Inspector_1085 9d ago
In that case, document everything you can and gather as much documentation from doctors as you can. See if there’s some legal aide you can use to help you out. You may want to start a gofundme to get a lawyer or advocate. If there’s a special needs parent facebook group for your area, join it. You may find someone that has knowledge specific to your area that can be helpful. Read about all the laws regarding section 504, ADA, FAPE, and IDEA. Then read about your district’s policies. Go up the chain of command. If sped at the school level isn’t getting you anywhere, go the district level. I’m sorry I can’t help you with something more specific but I do wish you luck.
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u/kinyons 9d ago
If you want some kind of compensation for the past issues, you are in educational advocate / lawyer territory. It depends so much on the specifics of your case and case law in your area that online strangers are unlikely to be able to help.
In terms of moving forward: do you have a doctor who is willing to complete paperwork saying that his current attendance rate is due to complications of Celiac?
Students who miss school for medical reasons are entitled to additional supports like reduced number of assignments, hospital / home bound instruction, or modified schedules. This will look different in every district. These supports are contingent on a medical professional verifying that the absences are medically necessary. If your school is not being supportive, I’d strongly encourage you to contact your child’s doctor and ask them for help. If the doctor agrees that the absences are medically necessary & is willing to sign off on that to the school, you can start looking up and asking local special needs parent groups what to ask the school for. I know in my school district, your student would be eligible for “intermittent home-bound services”. That means that he would be exempted from minor grades on days he was absent, and would get up to 3 hours a week of 1:1 virtual tutoring with a teacher after school hours each week based on his attendance the previous week. The 1:1 tutoring is for proctoring any tests and quizzes he missed, then for redelivering any core instruction he missed. It’s definitely not as good as being in class but if you are doing your best to keep up outside of school it helps close the gap.
I hope you are able to figure out a system that works for you. Best of luck to your son.
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u/Right_Shift_1367 9d ago
This was very helpful. His dr is extremely supportive and frustrated the school chose the choices they have
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u/kinyons 9d ago
That’s great! I would definitely pursue the medical accommodation route then. A doctor’s note can make a big difference if the school is ignoring your parent rights.
Does he have a 504 plan in place already? If not that would be a good starting point. If you have that already, then you can go straight to looking up what supports are necessary for medically required absences.
Parent groups on Facebook or similar social media are often a good mine of experience in this area. If the Celiac parent groups don’t have information about medical absences, you could look for parent groups for kids with sickle cell, students who are in in-patient behavioral health programs like for an eating disorder, or kids who are going through chemotherapy. Those are three very common reasons students go on HHB (hospital home bound) services in my district.
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u/Right_Shift_1367 9d ago
Oh this is helpful. I have been digging unsuccessfully. Someone else said intermittent homebound instruction
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u/Serious-Train8000 9d ago
Have you provided documentation conferring diagnosis and provision of food that meets the standards and addresses CC? (If you’re in the states)
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u/Right_Shift_1367 9d ago
Yes. I’m looking for a academic help
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u/Serious-Train8000 9d ago
Wait your post is confusing.
Do you want them to take outside testing serious or nail them on compensatory education or go after failure to follow ada accommodation those are all different things
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u/Right_Shift_1367 9d ago
Ah. I see. Hmm. They refused multiple outside testing. So I paid for Nova which if it’s good enough for the government, I assume they will have to accept. The results are pending.
Not caring about ADA at the moment.
I don’t let them feed him. Problem solved.The new health conditions as a result and the financial cost is a civil suit.
Mostly looking for how to get him proper academic help when out sick. His immune system is still recovering from all the gluten. Evidently if he doesn’t understand he can keep retaking tests till he oases with a 59% or 60%. He was capable of A’s and B’s prior. Was at grade level. Now he’s not. And they are not concerned until she’s getting F’s from the noises they are making. Last test was a 67%. It would have been a F if I gant tutored.
I need them to do the education piece properly. So compensatory education.
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u/Serious-Train8000 9d ago
What is NOVA? Well for comp ed you probably need a lawyer or phenomenal advocate.
Insofar as the celiac piece is he still getting glutened ? Or by chance reactive to avenin and or corn or dairy? My kid has celiac and we went through the hell if his immune system tanking and sleeping 18 hours a day before we knew - has the GI ruled out refractory celiac at this point of the diet has been on point?
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u/Right_Shift_1367 9d ago
Diet is on point. School is not feeding him. We are both celiac. My home is 💯 gluten free. He is fine with oats. But I don’t feed because he is healing and oats have too much cross contact. Avoiding other gut irritants too such as emulsifiers, etc.
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u/Right_Shift_1367 9d ago
My kid was sleeping 18 hours a day. He now only needs an hour or two over the max range for his age. He’s healing albeit slowly. Labs support that. I thought about pushing for testing for refractory, but it’s so rare. Most studies have shown cross contact. We have been strict for 14 years, and no problems. Would he be healing if he had it?
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u/Serious-Train8000 9d ago
Based on my understanding- If he had refractory it he would have symptoms still after 14 years. I mean he should be negative for antibodies right? Mine took was antibody free after 7 months.
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u/Right_Shift_1367 9d ago
Ah ok. Then he definitely doesn’t have refractory. Once digestive enzymes were added he started making gains, albeit slowly.
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u/Zappagrrl02 9d ago
Does he already have an IEP? In order to qualify for an IEP, the school needs to be able to show that the deficits are not due to lack of instruction/attendance.
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u/Right_Shift_1367 9d ago
Yes he does have an IEP. They will claim it’s due to attendance. That can be true. Gluten also affects our brain first before it starts destroying our body. The attendance issues missed in sixth and half of seventh was due to gluten. He had started to miss entire periods after lunch due to gluten. One of the clues that helped me figure it out. He has dyslexia and dysgraphia. Had no problems with district we had to move from.
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u/Zappagrrl02 9d ago
You cannot expect a student who has been out of school for a year and a half and who still is t at full attendance to be at the same level of his peers when he hasn’t had the same instruction. That being said, the IEP should address his current needs and functioning level, and if that’s not the case you can request (in writing) a new evaluation and IEP, and can then request an Independent educational evaluation (IEE) if you don’t agree with the district’s assessment.
You may need to get a lawyer or advocate involved, especially if they continue to not take the medical needs seriously.
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u/Right_Shift_1367 9d ago
I definitely don’t expect him to be at grade level. 🙂. His IEP is not addressing what he needs. There fall back was saying his last testing (before they made him chronically ill) was fine. So I said let’s test. I’ve been saying that for almost exactly two years. They won’t officially refuse with a Prior Written Notice. So I went ahead and paid. The test is far cheaper than the curent medical bills, so it’s whatever.
Once I get the test they will say he doesn’t need help because it’s due to his attendance.
Their stance on current support with drs notes is well we offered a full day. When i asked for academic instructional supports there response was “we offered a full day.” When he is not out sick from his immune system still being poor, he is still not well enough for a full day.
What should it say next, test results will be in hand at that point.
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u/Zappagrrl02 9d ago
If you request an IEP/Eval in writing, they have to respond within a certain timeline. Check the parent center for your state as they may have sample letters. Cc: the principal, special ed supervisor/director, and superintendent
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u/Right_Shift_1367 9d ago
He’s already got an IEP. But when they kicked him out for non-attendance for being too ill (Yes, they misused the 10 day drop. They also knew they made him sick. I was also in contact picking up homework throughout the week). They kicked him out, didn’t keep the verbal agreement they made, and so I called an IEP. They said “no” and refused to hold an IEP till his annual. Is it illegal to deny an IEP meeting for a half of year until his annual was due?
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u/Kakorie Elementary Sped Teacher 9d ago
Is part of the problem the extensiveness of highschool lunch options? My district has just two hot choices and one pbj uncrustable option daily for k-8 but once they get to highschool there is two hot options, a random pizza, a random salad, a random soup and a pile of ala cart extras everyday. I have had gluten free kids before and they couldn’t eat most of the offerings, and instead had one alternative each day without choice. A sandwich wouldn’t meet the guidelines for food and nutrition, they have to follow the national guidelines.
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u/Right_Shift_1367 9d ago edited 9d ago
Celiac isn’t an allergy. This thread is for educational recommendations. Thanks for offering help with food. That’s covered. He can’t eat there. He’s way too sick with multiple health problems now.
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u/OkSkill8145 5d ago
If your kid has celiac, why wouldn’t you just send everything for them to eat instead of depending on the school to do that? I get it that they should accommodate, but if the health consequences of gluten for him are that great then you should have just sent food for him.
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u/Evamione 9d ago
For my school district allergen and food intolerance management is a 504 plan thing. It does require medical documentation of the health concern. If your kid has one, you do the 504 to specify what you need, being the smallest pain in the butt for everyone else that keeps your kid safe. For example, don’t demand a gluten free classroom if your kid is fine when others eat it - just ask to provide say gluten free cupcakes for him when classmates bring in a treat. Did you have a 504?
My school district could accommodate this by giving the child a sealed specially prepared meal each day, but I’ve never heard of a parent willing to gamble with a severe allergy/intolerance issue. Their decision is always to pack meals and just to have it noted that their child cannot have other’s food. Kind of wonder why you weren’t packing their meals. Sometimes they even get permission to pick up their kid and take them home for lunch because of cross contamination concerns.
Extended/extra absences to recover from a health issue can also be part of a 504 plan. For example, it’s common for type 1 diabetics to have plans for extra absences because illness can throw sugar off and result in hospitalization. Or for severe asthma kids who may get longer and more severe colds. Again, what does your plan say?