This is a tough one. We had a similar situation this year in kindergarten but
worked it out...but only over time with some near-misses. School never did get
it quite right and if my son was as sensitive as your son there would have been
an ER trip. Here are some suggestions.

Get your son's condition and his needs in writing from a doctor. Preferably a
local well-respected allergist, not your DAN doctor. Our school nurses were
actually dumb as rocks AND suspicious, and after we got the IEP completed they
took 4 months haggling with them to hammer out a health plan we could live with.
In our case, since the IEP was finalized in Feb, the health plan wasn't done til
June, by which point it didn't make sense for him to start school that year-
they effectively denied him his FAPE that year (we were looking to move him from
private PreK to public PreK so he was in school already -we don't have universal
PreK here, just special Ed and the autism programs are horrible -we couldn't
start public school til he was at the point of mainstreaming. That 4 months cost
us about $20,000 in private aide salary). Anyhow, the nurses finally insisted on
an in-person consult with the allergist, and even he couldn't get them to
believe what we were saying -that my son is allergic to most foods and that he
could anaphylax on airborne wheat or corn. I ended up writing the "Health Plan"
which I found out later on did not comply with state format, and got it approved
the day after school ended by a nurse unfamiliar with the whole ordeal who was a
12-month employee (first nurse stopped working the day before). Then, the week
before Kindergarten began, a new nurse informed us we would have to write it all
over for Kindergarten. I had refused to sign the IEP until the health plan was
finalized to my satisfaction. Long story short -in our district principals get
to approve the details of what is permitted in their schools and ours (this was
a different school than PreK) did not want to allow us to inspect classroom
craft materials, however, which tend to have a LOT of gluten and corn in them
(think plaster of Paris). I ended up negotiating for a walk-through with the
classroom teacher, the autism (pull-out) room teacher, but was refused by the
art teacher -this was a resource room used by all classes and was of course the
scariest. My son had an aide, who we hired and trained before school started and
then offered to the principal and she was willing to hire her, and we relied
heavily on the aide to spot problem situations. However, I attended every class
event that had food, and there were 2 risky violations of the health plan and
she was absent for one and didn't intervene for the other (as a school employee
she probably didn't feel she could but this of course put my son in a dangerous
position). there were several gaps I hadn't expected: the parent volunteers in
the classroom were unaware of my son's condition. The school could not divulge
this information to them without my permission, but nobody bothered to tell me.
So when they created class activities, they did not work around his allergies.
The classroom was food-free, except for snacks and special seasonal activities,
several of which involved cooking, and the health plan specified that if my son
was in a room where wheat or corn became airborne, he could not re-enter the
classroom for 24 hours. Of course, the school's solution was to just send him to
the autism room for a day, which was an unacceptable violation of his
least-restrictive environment provision (they wouldn't have sent a non-disabled
allergic student to the autism classroom so his classmates could bake cookies),
so I had to insist they could not do that AND police the classroom during class
food activities to prevent exposures. The room parents were volunteers so the
teacher did not want to clamp down on their volunteer spirit, and often they
didn't inform her (to inform us) of their activity plans until a day or so
beforehand. I ended up missing so much time from work to be in the classroom
(for this as well as IEP meetings) that I lost my job.

A few things worked for us: the principal agreed to send home a letter with
parents asking them not to send peanut products to school for snack or lunch. We
had our doctor draft a letter, and the principal re-wrote it to her own
criteria, not exactly what the doctor wrote but it ended up being safe enough.
The principal had the authority to do this in our school district and was a
control freak. We also met with the principal the spring before school started
and presented our allergy concerns, and to her credit, she offered to place our
son with a teacher who was very organized and planful about classroom activities
and didn't to spur-of-the-moment crafts or things. The fact that the school,
while not peanut-free, did not have a free-for-all food atmosphere helped, the
only food in the classrooms outside of snacks was planned in advance (though
there was nothing to prevent parents from sending, say, valentine cards with
candy attached-which appears to be all that is made these days).

What would have strengthened our case would have been to have our son designated
as "Other Health Impaired". This is a category under IDEA which specifies health
conditions that affect a child's ability to learn. You will need to go through
Eligibility for this, just as you do for an Autism educational label. In our
state this can be extremely time-consuming (many months) and there is no
automatic timetable that governs how fast they must do it. Our Eligibility
process basically shut down over the summer when 9-month employees weren't
working. You will need to have letters from your doctor specifying the condition
as well as what protections the student requires. The more doctors letters you
have that at least attest to the condition, the stronger your case. A local,
well-respected doctor is going to help you the most. We have fostered a good
relationship with the top pediatric allergist in our city just for this reason,
and it paid off. Your doctor may be able to give you advice based on his/her
experience with your local school districts...believe me, allergists have to
deal with school districts all the time. Any documentation you can provide the
allergist will help make your case with the allergist...ER admission/discharge
papers, journals with dates, exposures, reactions, incident reports home from
daycare with previous allergic reactions, or just notes that you've written up
formally describing an exposure and a reaction, with dates, times, and suspected
foods. This all becomes "evidence" to both convince the allergist and get him on
your side, and documentation to present to the school district to validate your
claim.

I would also strongly urge you to obtain an advocate who knows OHI law (most
autism advocates won't know the laws under IDEA or in your state regarding Other
Health Impaired statutes and regulations and case law, and this may be hard to
find, you might want to go to your local chapter of ARC or another
health-impaired advocacy or support group like a diabetes or celiac group to
find someone like this). Another person you may want to line up as backup is an
attorney specializing in special education law. We were advised to have one on
retainer that could be called in on short notice (we ended up not doing that
because we couldn't find one versed in health matters).

Be prepared to know exactly what is safe and not safe for your son. For my son,
I know that any craft materials need to be okayed by me in advance, and that
this may take months. Craft manufacturers aren't required to put their
ingredients on the label like with foods, and so you have to call them to find
out the ingredients, and they in turn usually need to call their suppliers to
find out what foods the ingredients are derived from. This sometimes is a dead
end, and even whenit works can take months. You'll be on strongest footing if
you can provide a list to the teacher and resource teacher of SAFE, APPROVED
craft materials that they can use in your son's classroom rather than asking
them to give you a list in advance of what they want to use and you running
around to find out if they're safe. If you can get this written into his health
plan/IEP, then it has the force of law behind it. Be prepared to remind them the
IEP is a legally binding document and any emergency room trips due to violations
of the IEP will be addressed by your lawyer. Most school districts are very
liability (cost) conscious and so this carries weight, but mostly with the
principal and central office admnistrative staff who have budget responsibility.
I suggest not mentioning this until AFTER the IEP is written to your
satisfaction and you have signed it. They will not agree to something legally
binding if they fully realize the risk to them of being sued for things they
don't feel they can enforce in a classroom.

This is all a lot of legal work and will take months to arrange. But where the
rubber meets the road with your son's actual health is in the classroom. I would
suggest that you volunteer to be the Room Mother (or whatever they call it) and
therefore the one to organize class activities. This also gives you the
teacher's ear and gets you (hopefully) on her good side. You will need her
affection as well as her attention, engagement, and cooperation. This will
change every year. It's also important to develop a relationship with the
principal to request teachers for your son, every year, who are open minded,
cooperative, have good relations with parents, and rather strict about what goes
on in their classrooms.

You will still need to be there. I recall the Thanksgiving activity last year
where the class baked stuffing, chicken nuggets, and tiny pumpkin pies. This was
the highlight of the year for my son's teacher, who was raised on a farm and had
her own recipes to give the parent volunteers to bring ingredients to class to
prepare. Hazards abounded...stuffing mix bags being opened, flour and cornstarch
being mixed...etc. I was able to get ingredient lists in advance, but no.
Details about how and where the ingredients were to be handled. Every time I
asked the teacher she sent me to the room mom. The room mom was a ditz and just
didn't get it...and she didn't answer my phone calls and emails. She said she
had delegated the various foods to different parents, and the parents weren't
giving her details in advance. So I went to the class for an entire day, missing
several important meetings at work. When the parents began pulling out stuffing
boxes and bags of flour, I had to ask them to put them away and talked to the
resource teacher who was in the room helping out that day. I explained that if
those materials were opened in the room, my son would be forced to leave school
for 2 days. She got the parents to move the mixing tables out of the class into
the hallway and did the mixing there, and brought the finished mixed product
back into the room. Meanwhile I and my son stayed alone in the room mixing his
pre-cooked quinoa-flour pie crust and his rice stuffing (pre-cooked so it didn't
have to go in the oven with the wheat and cornbread stuffing). He ate it cold.

The law is on your side, but the school district, principal, teachers, and
potentially the other students and their parents are likely to see all this as a
great burden to them, so it will be up to you to make it EASY for them to
comply. Anticipate what they need, supply lists, safe ingredients, etc., like
your variety of backup snacks. Be prepared both medically and legally. Make sure
the IEP specifies your son have his EpiPen within 30 seconds of him at all
times...classroom, playground, assembly rooms, etc. We supply ours in a fanny
pack. Make good friends with the school nurse or clinic attendant if your school
has one. Bake cookies and send flowers, cards, etc to all the relevant school
staff (including secretaries, etc.) at every occasion-holidays, start of year,
end of year, etc. You never know who this matters to...don't overlook anyone!

Lastly (in your spare time), become VERY familiar with IDEA and your state's
regulations regarding this area of law. There will be many instances where YOU
will be the one who knows the law and has to remind the IEP team, the advocate,
your lawyer, school administration, etc. Of what protections your child has.
Remind them (after the IEP is signed) that a trip to the ER may be followed by a
call from your lawyer. Be prepared to have them deny any responsibility or
violations of the IEP, but write down everything that is said to you, by whom,
the time and the date. If your child is verbal, get his version orally and write
it down with date and time.

I wish it was easier, and probably (hopefully!) the first year will be the
hardest and it will get easier after that. Good luck and please report back to
us on how it goes and what you learn in the process. Other children can benefit.

Suzanne


In foodallergyautismyahoogroupscom Jessica Carr <carrfamily4wh@...> wrote:
>
> By air borne...he at this point would not react to cheese sitting next to him,
but a child eating cheetos or something with powdered cheese near by. 
Especially if that child wipes their hands on their shirt or something it would
send the cheese into the air.  Also he reacts when diary is cooking so we are
unsure how he is going to do in any of the rooms near the cafe.  There isn't a
sink in the classroom.  I don't know if he is near the bathrooms so I don't know
if it is practical to have all the kids wash up after snack.  That's one thing I
need to check on Friday when we meet.  Regardless though, his contact dairy
allergy is so severe that contact to trace levels effects his breathing up to 3
days, so certain foods just can't be allowed into the classroom.
>        I'm really not being unrealistic here, it's about what my son requires
medically.  If the school can't accomadate him, than they are required to find
some way to provide a free education some other way.  Many of the schools in my
town are completely peanut free.  There goes the staple of peanutbutter and
jelly we all grew up on, but it has been ruled medically necessary for a number
of students so that's what they did and the others just have to be ok with
eating peanutbutter at home.  Dairy is certainly different and most parents
don't realize that dairy is in a ton of things.  I was planning on typing up
a list of diary free snack foods and if need be I'll even provide a box of
fruit leathers or pretzels so if a student brought in a snack with dairy, they
won't go without.  Many classes I substituted for used to have the same snack
for the class, so that can be a solution to.  But, in my expereince substituting
and student
> teaching, snacks usually lingrued.  Some kids took forever and then would put
a half eaten snack back in their desk and continue with it later.  For 2nd grade
(the grade my son is going into) teachers usually used snack as a way to managed
a students' free time.  Meaning rather than saying "at 10 we will have our
snack." and then cleaning up and going on to the next task.  They usually say,
"as soon as your done with your math you can take out your snack.  After your
snack you can get a book or magazine from the class library. At 10:25 we will
leave for art."  So you have some kids doing their math, some on snack, some
walking around, some reading.  That would only work with Elijah if everyone had
a dairy free snack.  I'll have to find out how his teacher usually does it, but
how I've seen it, the younger grades are on a very clear time schedule and 2nd
and up are more independent. 
>     How do you work out the kids eating in the classroom with your son?  Does
their lunch need to be allergen free in any way?  Does he have any contact
allergies? Does the teacher stay there or a para?  And about the art
supplies...I know there can be gluten, corn, and soy in art supplies.  My son's
allergic to all of them too but only if ingested.  But have you come across any
with dairy in them?  I have not but I do know that they do projects with milk
cartons, which of course would be out of the question.
> Thanks.
>  
> --- On Mon, 6/8/09, christel <christelking1@...> wrote:
>
>
> From: christel <christelking1@...>
> Subject: [foodallergyautism] Re: School
> To: foodallergyautism@yahoogroups.com
> Date: Monday, June 8, 2009, 9:13 AM
>
>
>
>
>
>
>
>
> few things. by air born do you mean if someone has a slice of cheese in the
classroom your child would react or do you mean if someone is mixing dried milk
it will be a problem? my son has airborn gluten issues to where he will seizer.
they can not mix ANYTHING in the class involving flour. they could have reguar
bread in the class but could not MAKE bread in the class. all kids are required
to wash hands after snack and all tables wiped clean with approved wipes so that
THEIR snacks and residue are not transfered all over the class making the room
unsafe. he also has milk (not just casein but also milk fat) and soy (not just
protien but lethathin, and oil in soy) reactions. so this minimizes all that
being transfered as well as egg anaphatic. art supplies are looked at ect. and
he has his own box of art supplies that is seperate as well so no other kids
have touched it. for lunch he can not eat in the cafe, kids eat in the class
with him. going INTO the
> cafe could cause seizers for my son.
>
> I think honestly it's unrealitic to think that the school could force OTHER
parents NOT to allow kids to bring anything with dairy into the room. other
parents aren't going to be set up for what dairy free means or how to prepare
safe things. the only way it could happen would be to send an approved list of
safe snacks home with kids at the beggining of the year and you are still going
to have a ton of really mad parents and kids over something like that. so I
guess it comes down to HOW sensitive IS your child. could again cheese be IN the
room, or bread made with milk ect?
>
> --- In foodallergyautism@ yahoogroups. com, Jessica Carr <carrfamily4wh@ ...>
wrote:
> >
> >
> > Thanks for responding Jenny. I'm meeting with nurse and principal on Friday.
It's just a little conerning because the nurse doesn't seem to know how to
handle his requirements. I've been talking with her for months on the phone. But
the school's required to figure out something. They do a peanut table so I'm
sure they can do a dairy one. The issue is there can't be any dairy in the
classroom and kids still bring snacks and b-day cupcakes.
> > Thanks
> >
> > On Jun 5, 2009, at 12:24 AM, Jenny Kalis <j_kalis@ > wrote:
> >
> >
> >
> > We're homeschooling now, too, but when my son went to school they had a
special table for kids with severe allergies. They actually had about five small
tables and the nurse assigned kids to each table according to what they were
allergic to. Unfortunatley with dairy sometimes one kid sat alone because it is
hard to find other kids who don't have dairy in their lunch. Basically, anyone
sitting with him would not be able to have spillable dairy like milk or yogurt
or you could request no dairy in any form at his table. At my son's table, kids
couldn't have peanuts or seeds. Usually most schools have plans in place. I
would call the school nurse and ask about what their policies are and how they
would handle it. Another idea is to have him at his own special table and to
have a lunch buddy to eat with each day. Perhaps you can coordinate a lunch
buddy schedule with the teacher and send home a note to parents stating that
their child will need to
> > bring a dairy free lunch to school on their designated day. Some kids will
forget and he may have some days eating alone but it is better than eating
alone, especially since lunch is such great social time. Another idea is perhaps
you could have your child eat in a separate room with a therapist and knock out
some therapy time integrated with lunch. Not perfect but productive.
> >
> > From: Jessica Carr <carrfamily4wh@ ...>
> > To: foodallergyautism@ yahoogroups. com
> > Sent: Thursday, June 4, 2009 9:12:51 AM
> > Subject: [foodallergyautism] School
> >
> > Hi, I've been homeschooling my son for the past 2 years because he reacts to
dairy on contact and even air borne. I we've been considering getting him into
public school for next year. I was wondering what kind of ways other kids are
accomidated for. We are asking for a dairy free classroom and dairy free area
for him to eat. This has been done with peanuts, but that is easier than dairy.
> > Thanks!
> > Jessica
> >
> >
> >
> > font-family: Verdana; font-size: 10px; font-weight: normal; } #ygrp-msg p a
{ font-family: Verdana; font-size: 10px; } #ygrp-mlmsg a { color: #1E66AE; }
div.attach-table div div a { text-decoration: none; } div.attach-table { width:
400px; } -->
> >
>