Help with gluten in school?

[SleepingBean]

(cross posted at neuro)

Well, we have been having some trouble with our first year in public school when it comes to gluten. There have been at least 5 instances where the teacher and or associate has forgotten and handed Bean a gluten snack to eat and / or gluten craft to play with.

Now I have sat down with her main teacher and principal to explain her illness, I have talked to the nurse, I have sent in written letter, I check in OFTEN, and I bring all her food and snacks daily. If I see someone has a birthday, I automatically bring a GF cupcake. I ask about what I can bring in for in class activities and I make the classroom playdoh. Still, there have been at LEAST 5 occurances of her being given unapproved items.

Bean is smart enough to know she shouldn't eat a lot of that stuff, and she has told them on 4 occassions, but she actually had one associate tell her she had to use the item anyway, and one time she trusted it was safe and would have eaten it (although the realized the mistake and took it back away before she did).

So, there MUST be a more fool proof way to ensure her safety in the classroom. Our open communciation doesn't seem to be doing it alone. In addition, since school has started, she has had two certain gluten reactions. The reason I know it is a gluten reaction is because it is unlike any other illness. When she gets gluten, she appears healthy, she'll be sitting there at our table, coloring or playing and she suddenly, without any warning at all, loses all bowel control and large amounts of liquid diarrhea come out. She is not otherwise "sick", and she doesn't even know what is happening, her body just relinquishes control of her bowels and she gets bad diarrhea. This has happened two times and both times, after school (within 3 hours after school each time). Previous to this, she has not had an incident in a year or more. Now, coupling this with them giving her gluten at least 5 times that I am aware of (and I would have no way of knowing if there were more) I can see we have to change something.

I'm sure some of you have some great ideas on how to address this in a more formal and effective manner. Currently I am talking to the principal and I sent out letter to her teacher and our AEA contact too.
Thanks in advance for any ideas!
warmly,
Laura

[halsgluten]

Re: your blog pictures: Wow! and lunch is 4 hours away...
the school lunches are so dismal anyway.

Could be worse, a superintendent of a nearby district considers it a made up disease...

I think you are doing great! Emphasize in your mind, and the mind of your daughter and her teachers, those times where your commutation worked! And keep at it.

Remember the experiences listed in the “Time for a giggle...” thread so you know you aren’t alone.
And remember the teacher has twenty kids to remember.
And, remember its only my diet, I can only expect me to be the expert.

This Halloween, we worked on either saying “no thank you” to a gluten treat, or accepting it and making it a gift to someone else (without the explanation). That way, instead of making 2 people sad, hurt, or confused, you make >3< people happy!

Hal

[lmb3]

My son has an IEP that addresses these issues. I made it clear to the school that his disabling condition is covered under ADA and would be watched very closely by myself and his doctors. I also let them know my rights to have an appropriate environment provided for my son while receiving public education.

If I were you, I would explore this option. My son has several other disabilities, so this option was a no-brainer for us. However, I know a few other kids who only have a gluten-intolerance or Celiac Disease and they were able to get an IEP/Service Plan put in place to address the gluten issue. The IEP would state what, when, where it comes from, who provides items etc and how a gluten exposure would be handled both by the school and the parent. The important matter here is that the IEP makes the school responsible and at fault if something were to happen on their time. This makes them liable and therefore more responsible/attentive to the situation.

If I am not mistaken, food allergies or dietary restrictions are covered under ADA if your child has not been diagnosed with Celiac Disease. But you might want to check on that. I know for a fact that Celiac Disease is covered.

Best of luck!!

[RathyKay]

I'm not sure I have any real advice... but I was thinking along the lines of Lisa. Tom has an IEP, but we had that long before we knew he had dietary issues. He's in a spec ed class with 12 kids, 1 teacher and 2 aides. I don't worry about him at all. In addition to the IEP, there's also a 504 plan. I don't know a lot about it, I kind of think of it as a more watered down version of an IEP. I keep thinking someone told me the severe corn allergy folks use the 504 plan.

So, I'm assuming you met with the teacher. Did you talk with the associate, too? Do parents volunteer in the class? Can you have a meeting with all of them, or hand out a flyer to be sent home to all the families? (At this stage of the game, I don't think Bean will be embarrassed.)

Last year, I had Tom going to spec ed kindergarten in the morning and a parent co-op regular preschool in the afternoon. At his spec ed class, each kid brings his own snack. At preschool, one parent brings for everyone. Initially, we were *only* doing dairy-free. Every day, I waited for the snack parent, read the ingredients and informed them what Tom could or could not have. I always had something stashed in my bag just in case. But, it was a daily (well, three times a week) reminder to whichever parent was there. We only had one goof-up, and that was because Tom doesn't know any better and he sat in the wrong spot and got the food in his mouth before they caught him. We went GF in February, and I just gave up on their snack at that point.

Does she have a MedicAlert bracelet for those times when someone tries to tell her to use it anyway? Who was it that posted about their "magic bracelet?" there kids used to prevent glutenings? "I can't have it, see?" One of my friends' kids told us the PE teacher "jumped" on one boy, insisting he eat the popsicle treat she brought for the class. He didn't want to because his mom wasn't there to tell him it was DF. I think he was literally in tears trying to stand up to her.

Good luck.

[jcc]

I posted some links on the sister site for medic alert bracelets. Might help. I also agree with IEP or 504. My daughter with seizures had a 504.

They drafted something up for my younger daughter this year... I'll have to find where I filed it. I'm not sure it was either of those things... but it came with a cover letter, and a description of her symptoms and everything else. [ok...found it. It is an "Allergy Emergency Care Plan" with an allergy listed to "gluten". She doesn't actually have celiac disease, and I put gluten sensitivity on the form... so I will not squable about it being handled as an allergy. For symptoms, the following are checked: itching of the skin, rash, headache, nauseau, vomiting, abdnominal cramps, felling faint, listless, fatigue, diarrhea, joint muscle pain, stomach ache. The neuro symptoms aren't mentioned, but I have't seen those in years now. Her picture is attached to the form.]

It goes to every teacher she has, including music, gym, and the principal, etc, they must sign it, file it, etc. I didn't do anything special... other than mention gluten sensitivity on the routine health form, and they took it from there. Of course, this is our six year in the school system gluten free...same school.

So.... pretty much the whole school knows by now, and her teacher this year she has had twice before... so all I did was send in a bag of gf treats to be available, with no special conference or anything. J, is 10, though. It gets easier as the kids get older. We've been really lucky.

Cara

[SleepingBean]

Good ideas you guys ! Thank you! And it's good to be reminded to think positively.
:)

We are having a protocol written up to take a more formal approach, but without the 504 or IEP at this point. We will all be paying close attention from here on out (I would think!) so I feel renewed with some hope that all will work out well.

[halsgluten]

Hmmm ... IEP for food sensitivity, had not thought of that.

For childless or NT readers, IEP = Individual Education Plan

We have received some pressure to get an IEP for T. More precisely, we have been under pressure to get T. >labeled< so he can get an IEP. If he has a label, then he can get an IEP. If one student in the classroom has an IEP, then the classroom gets extra staffing.

Up to this point, it has been conveyed to us that the only label he can get has to be a permanent behavioral or learning disability label.

T. does present with some ADHD or Asperger’s features, but these have been resolving, and certainly that is one of the reasons for the GFD, and there are certainly more profound cases of ADHD or Asperger’s locally with or without IEPs.

So, we are reluctant to go for permanent ADHD or Asperger’s labels if the GFD and a couple more years of development continue to resolve things.

But, even if we can get a GF IEP, I don’t think it is what the school is wanting.

Hal

[RathyKay]

So... pulling this a little off-topic. Hal, who is the pressure coming from? The teacher? Because extra staffing isn't free. It's nice in the classroom, but special ed doesn't want to pay for that extra staff. And, yeah, a GF IEP would not get you that extra person in the room.:p

Is the label really permanent? I mean, if three years from now you decide he's a typical kid (as long as he's GF), you can end the IEPs. The next teacher shouldn't know anything about it, right?

A real-world friend of mine had her son diagnosed with autism somewhere around between 2 and 3 years old. She did the GFCF diet with great success. Her son was in Early Intervention (with an IFSP... the younger child version of the IEP) and then went into spec ed preschool with an IEP. By the time I met them when he started kindergarten with Claire, I thought he was a typical kid. At some point in the year, he did have some issues, so she brought up his history with his kindergarten teacher. At some point during first grade, they realized his fine motor skills were not keeping pace with everyone else. I remember her mentioning that it was nice to start out with a clean slate, but it looked like she's was going to have to bring his history to the current teacher to see what could be done. Ultimately, they got him in to OT to work on his writing. The point of all this rambling is, he didn't have an IEP in kindergarten and first grade, but he did have prior to that. The teachers didn't know about it until she brought it up. Of course, maybe that's easier to do in the younger grades?

[Electra375]

I would get a 504 if possible. I know we would have trouble getting a 504 b/c we do not have 'biopsy' proven CD. I have not had any problems with preschool and I do not expect any problems next year at public school (given they know me and the situation already). I have already discussed the 504 issue with them.
I would treat it like an anaphylactic allergy when discussing it with the teacher and whomever else is invovled. The schools here are very sensitive to allergy awareness and do not want to have a child have a reaction. The general consenses is people understand food ALLERGY more and more as more children are deathly allergic to nuts, they simply do not understand Celiac Disease. Someone has a siggy line about a relapse in children being extremely harmful.
Also, if you haven't already, make sure that your daughter has unlimited access to the bathroom and can leave without permission in the event she needs to. And exagerate if necessary the reason behind the request, I would go all out and state, if she is in any contact with gluten she will loose all bowel function as a result of her condition. I would also have a spare change of clothes for her at the nurses office or classroom. As embarrassing as that is, it's better than not having something to change into.
I HTH and I'm so sorry you are not being listened too -- that is horrible. I have had nothing but good experiences and I have heard only good experiences from moms of allergic children in our local schools. I attend a local "food allergy support group" and they have been a blessing.

[halsgluten]

... Hal, who is the pressure coming from? The teacher? ...
Is the label really permanent? ...

The teachers want improved behavior from T. Both the teachers and school psychologists hold out the extra staffing “as a carrot” as much as anything, and admits that the extra staffing goes to the class as a whole.

T’s symptoms are along the lines of Asperger’s and ADHD (he’s just too smart for the class :rolleyes: 3 points shy of gifted). Intestinal symptoms are a milder than classic celiac. BTW, gluten challenges for behavioral symptoms take many months.

The teacher can do special efforts with T and other kids need special efforts, but that comes out of her time. Extra staffing would take over that effort for all kids in the class, but funding for that requires at least one in the class kid with a label.

The only temporary developmental label here is “Developmental Delay”, which goes away at the end of second grade, where T is now. We can end the IEPs, but any label other than “Developmental Delay” is a permanent record requiring disclosure.

He is bright but had social behavior problems in pre-school. We started the GF diet the month before kindergarten. He is a bit slow on the motor skills, he wont try to learn to ride his bike and can’t catch, but he can through a rifle straight pass and was awarded most improved wrestler. Disruptive social behavior has been the main problem in class, but that has improved in stages over the months. Emotional control is much improved. He has recently “got it” on self-directed reading, so disruptive behavior has been replaced with keeping his nose stuck in a book (not necessarily when the teacher wants him to. :rolleyes: )

Hal

[Electra375]

He is bright but had social behavior problems in pre-school. We started the GF diet the month before kindergarten. He is a bit slow on the motor skills, he wont try to learn to ride his bike and can’t catch, but he can through a rifle straight pass and was awarded most improved wrestler. Disruptive social behavior has been the main problem in class, but that has improved in stages over the months. Emotional control is much improved. He has recently “got it” on self-directed reading, so disruptive behavior has been replaced with keeping his nose stuck in a book (not necessarily when the teacher wants him to. :rolleyes: )

Hal

It has taken a full year gluten free for us to really see behavior changes toward improvement with our ds2. He was 3 1/2 starting GF, so I can imagine if a child is a bit older they have that much more to "catch up on". He was not even reachable to reason with until he actually started eating and wanted to eat which was nearly 10 months into GF. Each month that pass is better than the last.

I spent hours every day researching his diet looking for something else that might be causing his behavior problems -- then all of a sudden, they were gone, just gone (the major issues, the problems getting along, being mean kind of issues). I just kept thinking maybe it is Aspergers or some other mental issue in addition to the CD. I do know 1 thing, ds2 is super intelligent and does not seem to get along with his peers in all areas, especially free play. He has to have things his way, from his shoes and socks to his made up instructions to a game. Berkley Parents an on-line thing for genius kids talks about this very behavior.

I would suggest giving it time. Hopefully, you will not need the permenant record 'delay' label next year. You do have a year and a lot, an aweful lot, can change in 1 year.

The school setting may not be the best for him either at this point, but if it is your only option, I hope you can work within it and he manages to 'learn' what school is all about and adjust.

Look at geniuses in our culture/ society -- they were often labeled delayed, but were really misunderstood. Fight for your little genius, he's probably frustrated.

[SleepingBean]

Hal and Electra, I am nodding along with you both.

Bean was diagnosed autistic (aspergers, specifically) when she was just a young 4 years old. She is clearly not suffering from any traits of autism at this point in the game and no one has told me that I need to disclose that old diagnosis. We consider it innacurate at this time (since her gut healed) and so does anyone who meets her. So, no one has ever questioned it, in the school setting. BUT her behavior problems are very good now, in comparison to what they were, and she is blending just fine in Kindergarten / First grade. Now, I could see where in 2nd or 3rd they will want more from her in terms of behavior, and then we may utilize that old diagnosis to get some out of the box options to help (if needed).

I do undesrtand your not wanting to go the label route. I get that. Bean is also very bright. She is reading beyond the 2nd grade level in kindergarten and doing math and such. Her handwriting is bad (poor grip, low muscle tone), and we've never worked on spelling, so she is in a weird space. Too smart for most of Kindergarten to be remotely challenging or fun, yet in need of some development of hand and fine motor to be able to keep up with the demands of the upper grades. And they won't even consider testing her for her academic needs until 2nd grade (which I understand...but don't totally agree with....it seems very logical that if a child already knows the material presented and has to sit through what would be boring and easy tasks every single day, that child would be much higher risk for mis behaving and the label pushing follows).

Homeschooling, if you have a good network, can be really great. We haven't tossed that idea, but we are going to give public school a good shot.

Oh, and Hal, I don't know if you've looked into SCD or not, but we did find MAJOR shift of the problem behaviors for Bean when she got on that diet (in combination with enzymes and probiotics). She didn't have to do it very long, but it totally eliminated those lingering behavior and GI problems that didn't go away on the elmination diet alone. We haven't followed the SCD in a long time now, and she continues to do very well (with exceptions of occassions where she gets gluten in her food).

Boy do I ramble. I just really get the in between spot that you're in and I hope it goes well...whichever way that may be...for T's sake!
Warmly-
Laura

[halsgluten]

Bean was diagnosed autistic (aspergers, specifically)
Laura

If you can recognize 2 or more people from their pictures on this website and at least one more by their names, you are probably Asperger’s...(sigh) :D
http://neurodiversity.com/

Hal

[halsgluten]

It has taken a full year gluten free for us to really see behavior changes toward improvement with our ds2. He was 3 1/2 starting GF, so I can imagine if a child is a bit older they have that much more to "catch up on".

Yeah, there is exponential decay on "catch up" -- the kid has more to learn each day than the others.

But, the GFD has to run a year or two to be generally neurologically effective on developmental disorders.

Hal