School Problems

[dandelionmom]

I'm so frustrated with DD's preschool. I just want to cry. They keep taking risks with gluten.

I've had conferences with them. I've given them all the information. This is our second year with the same teacher in the same classroom (3 year old and 4 year old preschool). And they still don't get it and my daughter is still being put at risk.

And my youngest daughter who is also gluten-free starts at this school next year.

I'm going to set up another conference (with the director too this time) but what else can I do? They just don't get it. I'm tired of them making my daughter sick. Is this just what life is going to be like for my girls?

[shayesmom]

I'm so frustrated with DD's preschool. I just want to cry. They keep taking risks with gluten.

I've had conferences with them. I've given them all the information. This is our second year with the same teacher in the same classroom (3 year old and 4 year old preschool). And they still don't get it and my daughter is still being put at risk.

And my youngest daughter who is also gluten-free starts at this school next year.

I'm going to set up another conference (with the director too this time) but what else can I do? They just don't get it. I'm tired of them making my daughter sick. Is this just what life is going to be like for my girls?

I'm not even sure what to tell you to help you get through this. We struggled with much of the same last year and the year before (in pre-school). But at least kindergarten is currently going much more smoothly (though it hasn't been perfect).

If it's at all feasible, ask to be a volunteer parent in your child's classroom. This may give you the insight you need to recognize where the problems are and come up with ways to change it. You may end up making gluten-free playdoh for the class, or supplying them all with gluten-free soap. But at least you'll have some avenues to pursue to start making the classroom safe. Also, DO volunteer to help with any class parties because the parents that do come in to help will have no clue as to what cross-contamination is. I've seen them serve pretzels and then reach to serve my dd's snacks without washing up. Then again, I also have seen those parents use my dd's CLEARLY labelled soap which says "NOT FOR USE TO CLEAN DAIRY, GLUTEN, SOY, OR EGG-BASED MATERIALS" to clean up frosting and cake from themselves and their own gluteny utensils and bakeware. Seriously. My dd's private soap bottle was completely COATED in the stuff after one party! I expected pre-schoolers to not be able to read. But the parents???

Also, if you do meet with the teacher and director....bring along someone to also serve as a witness. Ask for a written plan that addresses what was discussed. I had several meetings with the teacher and director in our 2 years of pre-school. Truly, it didn't do much for us at all. The teacher did what she decided she wanted to do. No more, no less. They hemmed and hawed about writing anything down. The most that came out of it was some advanced notice before she did some gluten-containing projects. But at least I knew the days that I could pull dd out of pre-school. It's infuriating to pay not to send your child to school. But at least that's one less day sick from gluten.

I don't mean to sound fatalistic or to depress you further. I'm sure that there are schools that are absolutely wonderful. Ours was mediocre at best. We didn't have much choice in pre-schools in our area so I put in a lot of time finding alternative ways of doing things so that dd could be safer. We eventually got to a better place, but it wasn't where I think it should have been (though they did improve from year to year).

For elementary school, you may want to consider applying for a 504 plan. Ours was denied this year (despite dd being eligible). However, the school has been very good at accommodating most of our requests and very easy to communicate with. We're all a lot happier with this school than with the pre-school. And I've joined the PTA to play a more active role in school events, bring more awareness to food allergies/Celiac Disease, and to hopefully bring more attention to dd's issues so that more of the parents are aware of who she is...and what she needs from them to be safe. So far, we're getting some positive results.

So hang in there! Do all that you can to make it work. And if it's not working despite all of your efforts, seek out a new pre-school or consider other options (homeschooling, or teaching co-op). Don't let anyone tell you that you're stuck just "dealing" with the system as it stands.

Good luck!

[dilettantesteph]

At one point my son's school was poisoning him with gluten and then threatening me with child protective services when I didn't send him in sick.

I suggest getting your doctor to write directions on office stationary. You could even write it for the doctors office to copy from. They don't ignore instructions as easily if they come directly from the doctor.

[celiac-mommy]

At one point my son's school was poisoning him with gluten and then threatening me with child protective services when I didn't send him in sick.

I know this probably sounds horrible, but after my son's diagnosis and the teachers just didn't seem to completely get it and were being risky in the classroom, they would call me to come get him when he had 'd' I told them no, I said if they were being careless and were causing him to have uncontrollable d and some behavioral problems, then they could be the ones who took care of it. His preschool is on my hospital's campus, so I'm always right there to check on him, but I can tell you it only took two times for things to change quickly and drastically and there's been no issue since. I did go in and talk to the director. I told her the same thing. I would not be leaving work on a daily basis to pick up my kid who has been MADE ill by the staff at her school, so something better change fast! Now mind you, he was not in any distress, it didn't stop him from playing or running around, he just became more of a terror and pooped himself in the process (otherwise I would have taken him home)

[ravenwoodglass]

For elementary school, you may want to consider applying for a 504 plan. Ours was denied this year (despite dd being eligible).

Why was the 504 plan denied? Legally that should not have happened. You have a legal right to have your child be safe in school and to have any disability dealt with in an appropriate manner. If your doctor has given you a prescription for a gluten free diet they can not legally refuse to do a 504 plan. He would also need to write on the script why the diet is needed, for example to prevent D or to prevent tantrums or blistering (with DH). Many schools either don't know that a prescribed gluten free safe environment is their responsibility. I am glad that they are cooperating but once that 504 plan and the IEP is written then the school's added expense for ensuring that materials were gluten free would be covered through their special education budget. Don't let them deny you your child's rights just because it would mean that they have to learn how to keep the child safe and do it.

[Amyleigh0007]

I would change preschools, if that is possible. It's not a risk I would continue to take. Your daughter's health is in danger and it sounds like either the staff is too busy or not paying enough attention to help your daughter stay safe.

[shayesmom]

Why was the 504 plan denied? Legally that should not have happened. You have a legal right to have your child be safe in school and to have any disability dealt with in an appropriate manner. If your doctor has given you a prescription for a gluten free diet they can not legally refuse to do a 504 plan. He would also need to write on the script why the diet is needed, for example to prevent D or to prevent tantrums or blistering (with DH). Many schools either don't know that a prescribed gluten free safe environment is their responsibility. I am glad that they are cooperating but once that 504 plan and the IEP is written then the school's added expense for ensuring that materials were gluten free would be covered through their special education budget. Don't let them deny you your child's rights just because it would mean that they have to learn how to keep the child safe and do it.

To be honest, I have no idea what the motivation was behind denying the 504. Several things were "off" when it came to that meeting. For instance, I had intended on going without dd and bringing my mother along so she could be a witness to it. The school staff insisted that it would be better if I also brought dd with me so she could familiarize herself with the school. When we showed up, they then suggested it would be "better" if dd wasn't in the meeting and that my mom watch her while another staff member gave them a tour. So I was essentially on my own.

As the meeting progressed, the nurse, psychologist, and the kindergarten teacher were all for the 504. It was the principal and our former pre-k teacher who were against it and insisted that it wasn't needed as they could "handle" it (this was weird as the pre-school teacher wasn't able to "handle" it for two years...so I was surprised by her objection in the matter. It's my opinion that she was instructed to object as she would no longer be playing an active role in dd's education and therefore could take the "fall" for our displeasure with the outcome). After a half hour of haggling, I told them that there was no way I was leaving that meeting without a written agreement on how dd's case would be handled. So, we agreed upon a written individual health care plan to be drafted up by the school nurse.

They have followed through with their end of the bargain (for the most part...we did have an issue with playdoh in the classroom, which dd was not allowed to touch, but still got sick from cc on one occasion). Our kindergarten is set up so that it is from 8 AM to 10:30 AM, 5 days per week. So we haven't run into lunchroom cross-contamination issues. This played a major part in why I haven't pushed the issue further at this point. And the staff all agreed to sit down at any point during this school year and reassess the situation and also for next year with the transition to full school days. Another reason that I gave them the benefit of the doubt is because my dd's teacher recently had a niece diagnosed with celiac. And she's VERY interested in learning more about it. She's been absolutely wonderful as far as communication and honesty. But that won't necessarily carry over next year when we have a new teacher.

FYI, I also did have a script written by our doctor on dd's issue (but celiac was never formally diagnosed...our dx is gluten enteropathy and multiple food allergies). I also have a friend who is a guidance counselor in another school district and she also has no idea why the 504 was denied. She suspects that it would have gone differently if I had asked for an IEP, as then the school would receive additional funding whereas they don't get that with a 504.

Who knows?

In the meantime, I am keeping copies of all communication between staff members and myself (including copies of any absences my dd has due to their non-compliance. And for the next meeting, I will probably bring either my friend (the guidance counselor) or my dh's cousin (an attorney) as my witness and to keep the meeting focused on my dd, not any district policy agenda.

Any further insights or suggestions would be appreciated. I do want to be fully prepared when this comes up again.

[ravenwoodglass]

FYI, I also did have a script written by our doctor on dd's issue (but celiac was never formally diagnosed...our dx is gluten enteropathy and multiple food allergies). I also have a friend who is a guidance counselor in another school district and she also has no idea why the 504 was denied. She suspects that it would have gone differently if I had asked for an IEP, as then the school would receive additional funding whereas they don't get that with a 504.

Who knows?

In the meantime, I am keeping copies of all communication between staff members and myself (including copies of any absences my dd has due to their non-compliance. And for the next meeting, I will probably bring either my friend (the guidance counselor) or my dh's cousin (an attorney) as my witness and to keep the meeting focused on my dd, not any district policy agenda.

Any further insights or suggestions would be appreciated. I do want to be fully prepared when this comes up again.

It sounds like the teacher she has this year is a good one to have. If she could note your DD's reactions, including both physical and behavioral results from glutening that will help next year. Also have the doctor give you a specific letter as to what the effects of gluten and CC do to the child. Do bring a witness with you for the next meeting and also as complete of a diary of reactions as you can. I agree you need to have an IEP, that is the key to getting the funding. With her teacher this year on your side, and specific record keeping on her part and yours it will be easier to get that 504 in place. If your DH's cousin can get some printouts of exactly what the schools federally mandated responsibilities are that may also help. The school may not be totally cognizant of exactly what they are legally required to do and/or may be uncertain of their abilities to do it well.

[DanaDee]

But and IEP and 504 are two different things. You can only get an IEP if testing is done to indicate a learning disability, the child needs to be around 2 grade levels in ability behind peers. ( essentialy how they determine if services are needed). The issue was probally you not having the "official" celiac disease diag. My GI said, sadly, we need to pursue it to have the documentation for the 504.

The things the 504 is asking for for a celiac disease student usually don't cost the district any extra money, only time spent making sure things are a certain way for these kids.