Special needs of all sorts and the school year

I had a great time at the Phila area meetup yesterday. What an interesting, thoughtful, funny, snarky bunch of people.

One theme that came up a lot was that parents seem to be dealing with all kinds of issues with their kids and a variety of special needs, and things seem to be extra amped up now that school's in session.

Food allergies. ADHD. IEPs. Therapy. Learning disabilities. Movement issues. Autism/Asperger's. All kinds of stuff. I just think about these parents standing at the bottom of the cliff, looking up, knowing they're going to have to do such an incredible haul to get up to the top to make sure their kids are OK. It's exhausting just thinking about it.

And if you're thinking, "This doesn't affect me," well, it might, and you just aren't aware of it. I found out last week that the "nut-free and dairy-free classroom" notice for my son's class didn't just mean that one of the kids, A., wasn't allowed to ingest dairy. It means that if A. touches dairy or touches a kid who's touched dairy and hasn't washed hands in between, he puffs up like a big red itchy wheezing balloon. It would have been nice to know how serious it was, so that I'd avoid all dairy things in my son's lunch. I'd been putting cheese inside his sandwich on the logic that my son knew not to give bites to other kids in the lunchroom (bonus of my short-lived gluten intolerance--my son accepts food issues). But once I told my son about the other kid's allergy *he* said, "Oh, so I shouldn't bring cheese in my sandwich anymore in case I accidentally touch A. after I eat it!" Woulda been nice to know--for us *and* for A. and his mom--three weeks ago...

So, anyway, until I get the message boards up and running, could those of you who've been there (enu, hedra, etc.) provide some emotional support for the parents who are in the middle of a long process of advocating for their kids? Also, is there anywhere online a printable list of commercial snacks that comply to food allergy specifications? (Like a list of snacks that are GF, one that's dairy-free, one that's soy-free, etc.)

Comments

[enu]

Even if you don't have a special needs child, you child is healthy and developing on schedule... that can turn on a dime. A blood test comes back all wrong, or a car accident, or just some freakish random occurance or infection, and you could be in the thick of it. Or your friend could.

For those going through it, I'd say the best advice I could have gotten and didn't was to get things "formalized" with the schools ASAP. We just kept muddling through, making everying our problem and nothing the school's and trying to be independant. It was doomed for failure; school rules and regs are set up for normal, healthy children - things like absenteeism and administration of drugs are set up for kids who get the occaisional strep throat or tummy ache, not the child on handfuls of meds who may be out for many days on end, or "in" but "out" mentally because she feels so punk.

So get expert advice (both medical and legal) and get it as soon as your child has a major diagnosis. And they will help you get a plan in place (IEP or 504.)

Aside from that? Make sure you manage to have some semblance of a life, even if your child is chronically ill or disabled. We didn't do so well on that account!

Also, depending on the nature of the illness/disability, start preparing your child for independance; managing their own meds when they can, learning how to refill prescriptions and schedule doctor's appointments, and even call insurance companies if necessary. These will be as important to her as knowing how to tie her shoes or cook.

And also, don't forget to enjoy your child and find joy in life when you can. Best wishes to all going through this stuff!

[lolismum]

I have immense respect and sympathy for parents who have special needs children, but I also have a beef with "normal" children (by that I mean children who do not have any diagnosed special needs) and their parents bending over backwards to accomodate every allergy, problem, sensitivity etc. My daughter went to a preschool where 5 out of her 13 classmates had special needs. 3 were autistic, 1 had a genetic disorder that stumpted his cognitive and physical growth and the other, well, we don't know, it was a host of problems. I am glad my child went to school with a diverse group of kids and learned not to sing or bang too loudly around the autistic/SID kids, to speak clearly and face him when addressing the genetic disorder kid who had hearing problems and lip read, but the 5th kid, who had a host of allergies, well, that's when I had to throw in the towel and go, "What the FUCK!" The school did not provide lunches, only snacks, and there was no heating facility, only a mini fridge. First came the nut allergy, OK, so no peanut butter sandwiches, no walnuts as snack, no cookies with nuts etc. Then came the diary allergy similar to the one you mentioned, so no yogurt, no cheese sticks, no cheese sandwiches. WTF! What are we supposed to feed those kids? I am sorry but if your kid is about to keel over at the sight of entire food groups that sustain and nourish their classmates, it's time you consider putting your kid on a daily anti-allergen, or seeking special needs/alternative arrangements for them. My child has asthma, and I just put her on zyrtec on a daily basis so the class hamster and guinea pigs could stay. I had a relatively easy solution, but I could have stomped my feet, cried, "allergy" so that the animals would be removed instead of medicating my kid. When my husband went through chemo, his oncologist gave me a whole sheet of instructions to give to the preschool teacher so that the spread of childhood diseases could be minimized and my husband would not pick up anything from my daughter. I looked at the list, thought about how inconvenient for 3 teachers and 16 little people to adhere to it so instead of imposing my will and concerns on 16 other people, and their families, I pulled my daughter out of school on days her dad's counts were low. Washed her hands and arms and face with soap in the utility room before she entered the house and stripped her clothes. My husband is sick, it is our problem, and as much as I would like everyone in the world to help us and accomodate us, it's not possible or practical. And you know what, dying from a bacteria while taking in chemo beats having hives, so I could have really stomped my feet about this.

[lolismum]

I mean "dairy", not "diary" of course.

[CtMom]

My son is autistic and we vacillate between two paths with the schools - easygoing and casual, or taping the IEP meetings and sending copies to the board ...

We've found overall that it is hugely useful to get outside evaluations, then bring those to the school, and if the school wants to do more or different evals, that's ok too. The more, the better. That ends up persuading skeptical folks in the school that we do need the aide, we do need the extra time, TLC, what have you. Otherwise you get a lot of lectures about tough-love approaches.

And again to echo Enu, find the joy you can in your child and if possible, echo that in the school environment so the main folks around your child can see the positive elements too.

I volunteer in my son's class once a week, which is hard and costs us money (babysitting for younger sib), takes freelance time out of my pocket, but I find the teacher might just be that much more tolerant of my son or more encouraging because I'm around and because I'm helping her in other ways. All-around positivity. Then I'm also close at hand when the social worker or the speech path or whoever happens to be walking by. Fosters more information, better communication.

And last - be easy on yourself for slipping once in a while, for maybe not being a saint in patience and idea generation and solutions for your child and family. Just being there to hug your child can overcome a lot of other goofs. Parents of spectrum kids often feel paralyzed by the sense that we have to do so much before age 5 or the rest of their live is doomed, and we have to do it all, ABA, GFCF, SP, OT, on and on, and at the end of the day, what is best, I think, is to know your child, what his or her energy level is for all that intervention and what he or she needs most. Target intervention instead of shotgunning it. It's saner for everyone.

Other parents may have different approaches, but that is how we've managed to survive that cliff-climbing that Moxie described - very apt.

[CtMom]

Re Lolismom - I totally hear your frustration and have struggled with the what-to-send-to-eat issue myself ...

Just one clarification - for a lot of these seriously allergic kids, it IS a life and death thing. Anaphylaxis shock kills you in 15 minutes with peanut and shellfish allergies, probably a lot more.

Just wanted to give you perspective on the diet thing.

And on behalf of the spectrum kids your child attended with, thank you for modifying behavior and sensitizing your family - if my son hears something that's too loud, he remembers it forever (literally, can't forget) and associates it with everything in that moment. So a fire-alarm bell ringing at school leads to years and years of fear associated with going to school, or painting, or eating, or whatever was happening in that moment it rang. He was telling us yesterday about something that scared him that happened when he was almost 2 - it was three years ago, and it happened for less than 15 minutes (seeing a scary scene in Finding Nemo in a waiting room). So it really encourages me to hear of kids who catch on fast and are sympathetic to kids w difficulties with that stuff.

[Helen]

For the food lists, you could try here: http://www.godairyfree.org/Table/Food-to-Eat/
They cost a small amount of money, but maybe a classroom could share one or something.

Of course there are other sites that have similar lists, I just happen to have this one handy from our dairy issues.

As far as catering to the needs of other kids with allergies, well, I take the stance of "How would I want people to treat my child if it were her?" I imagine how scary it must be to parent a child with a life-threatening allergy, how no one wants their child to feel singled out and resented because someone can't bring peanut butter, but the alternative is so much worse.

My SIL is forever ranting about how her child can't bring peanut butter to her classroom, and she has said things like "Well, that other child should eat lunch in another room alone," never mind that maybe her kid smears some PB on a desk.

Never mind that eating lunch alone for an entire school career has got to be a little demoralizing. A food allergy isn't something that derails learning, and I am happy to comply and be creative in order to not ostracize an otherwise healthy kid. I say this as the parent of a picky eater, so it can certainly be a challenge. She isn't of school age yet, but I can't think of a meeting or play group we attend where there isn't a food allergy. People are careful about snacks. Generally single ingredient foods are the way to go! Think grapes, carrot sticks, air popped popcorn with a little salt, that kind of thing.

I do think schools should make sure they have adequate facilities for storing food and heating food around allergic kids. If food groups are limited, then yes, why make the practicalities of finding alternatives that much harder.

[Slim]

The accommodation of allergies gets very tangled, very fast. Nut-free is pretty easy. But others --gluten, wheat, dairy-- are harder, and become harder still when you try to get something that is actually shelf-stable, minimally processed, and possibly organic, because the small companies that tend to produce, say, organic whole-grain crackers often can't afford to have a separate plant. My attempts to send moderately healthful snacks to preschool were foiled by the no-shared-facilities rule.
Our public elementary school does not require that food from home be nut-free, but people serving food to children know which children have which food allergies. By kindergarten, however, the kids are deemed old enough to know to wash their hands after meals so they don't get allergens on their classmates.
Whether people using the playground equipment on weekends are similarly considerate is anyone's guess.

[anon]

well crap. I hope I can continue sending yogurt with my kid when he goes to school. It is like the only thing he will eat. Dammit.

[Jo-Ann]

After our conversation about this yesterday I felt less alone for the first time in a long time. My severe food allergy guy I worry about less than my ADHD/LD guy these days. I read too much about ADHD kids becoming criminals later in life. His behavior is harder to manage and his interventions this year are very time consuming.

To the person who mentioned drugs for food allergies. My son cannot take any drug to help the allergies. He has to ingest the food before drugs can be used or he'd be on benadryl all day every day. Unfortunately they do not give any allergy meds to prevent a food allergy reaction. One of the only recourse is full avoidance. Usually after an exposure I have to wait for my son to throw up before giving meds. If I give meds after he eats the food and before he throws up he tends to throw up more and longer duration. This is the hard part of living with a food allergy. Also so many food allergies can become life threatening quickly. Something that becomes hives and swelling one exposure can be anaphlactic next time. I wish I didn't have to stomp my feet and yell allergy and just give him some meds. REALLY I do.

Thanks Moxie for your support yesterday. I always like hanging with you. I think it is the Mom with 2 boys thing ;) My husband cracked up when I told him the relaxation tape story.

[Shandra]

Having lost a child I guess I see the whole allergen battle as something I really want to do for the safety of other people's children.

I do think what is needed is a LOT of education and alternatives. It's not enough to say "don't send nuts or dairy," schools and communities have to rally around to provide lists of suppliers, recipes, and ideas for making sure the kids can get fed. And discounts and inexpensive selections.

At our local school (my son doesn't attend yet, but I heard about it) there was a child with the drop-dead nut allergy, and it was kind of neat - a local bakery went nut-free and became THE go-to location for snacks and bread, and then started making lunches too that parents could pick up at 8 o'clock. And a handwashing protocol was started in the morning and for kindergarteners at noon.

Then the local food bank realized it had peanut butter everywhere and developed a whole package for allergic families. And then the local grocery store set up a bit "safe for school" snack display. It was really quite cool.

With dairy I guess I'd be re-reading the Vegan lunchbox.

It is hard, for sure.

But can you imagine if your child was the accidental means of a friend's death? It's soooo scary. I think the trick is for schools and parents to really communicate about the real risks - so you don't ban everything every time, but assess the risk and then come up with a plan and meal ideas based on who is in the school when.

Because I don't think it's that common that you would have every allergy at the non-breathing level every time.

Lolismom, I just want you to know that if you were in my preschool I would honestly WANT to follow the protocol. I think your choice is wise, but there is also nothing wrong with asking a community for support.

[Jo-Ann]

Not to butt back in but many peanut allergies it is not breathing or swelling. Some kids (mine is one of them) has a life threatening drop in blood pressure. He throws up and seems ok for a bit after exposure then his blood pressure drops. This often is why peanuts is a killer.

This explains alot about peanut allergies.
http://www.foodallergyinitiative.org/section_home.cfm?section_id=3&sub_section_id=1

[andrea2]

I didnt read all the comments so I apologize if anyone has posted this already. But, this is really cool if you are a Whole Foods shopper - they have "shopping lists" for all sorts of special diets.
Heres what you do:
Go to the Store Locator, find your Store, then click on More Store Info.
http://www.wholefoodsmarket.com/stores/index.html

You'll see a list of things on the left side. Toward the bottom is Special Diets.

Click on the and you'll see:
Dairy Free
Gluten Free
Low Fat
Low Sodium
Soy Foods
Sugar Concious
Wheat Free

-----

Anyway, good meeting you all yesterday.

[paola]

I would love to see more caution in Italian kindergartens. Once kids are past the one year limit, it is no holes barred. I have fatal nut allergy to walnuts (and buckwheat, which I know is not a nut) and for a long time was obsessed about my child coming into contact with nuts in case he too was allergic(he isn't fortunately). On his first day at kindergarten ( he was 3) they had walnuts and gorgonzola cheese on the menu and I was waiting for 'that' phone-call all day. When I went to pick him up and I asked him about lunch, he told me he didn't have any of the blue cheese dish and I breathed a sigh of relief.

There is only one girl in my kid's class that is allergic to a number of foods, but the other kids eat those very foods around her and goodness knows how many times she has inadvertently come in conatct with those allergens. I do think admin at schools does not take allergies seriosuly enough here as there are realtively few food allergy sufferers, but this is definitely changing and I imagine they will some time soon, have to pull their socks up.

[Anon]

Something isn't settling well with me here. And it's the amount of kids who have special needs these days. I wish the cause of these various problems were top on the priority list of medical professionals and the govt. Sigh. Wishful thinker right? But it's just so unfair to our kids! Environmental causes, the formula culture, vaxing, whatever else, you name it. Why is this not a higher priority!?!? UGH.

[Brooke]

I'm sort of torn on the allergy thing. I believe there have been no verified cases of death from just exposure. A severely allergic child needs to actually ingest the food for it to be life threatening (I think eggs might be the exception since raw eggs can be aerosalized and inhaled). Not that you want to have a severe, but non-life-threatening incident, but simply bringing in a peanut-butter sandwich isn't going to kill the kid in the next room.

Yes, absolutely, if you are bringing in a snack to share, it needs to meet the requirements.

If you aren't actually sharing the food, I think the no-shared facilities thing is over-kill. We let my daughter eat what her daycare provides because it is too expensive and time-consuming for everyone to provide her alternatives. But it means she eats a lot of mass-produced, processed food that I don't want her to eat (Teddy Grahams, Ranch-blasted Goldfish crackers, etc all full of HFCS and hydrogenated oil and a lot of fake meat also full of non-food things). I can bring in fresh fruit, but anything else must be in original packaging and from a nut and peanut-free facility even though there are no nut allergies in her room and no one else would be eating it.

[meggiemoo]

Seeing my sister go through advocating for my 16-year-old niece (Asperger's, very recently diagnosed after years of therapy/meds), it seems like, as it is with lots of parenting issues, persistance and listening to your gut is key.

My niece grew up before there was much known or talked about in terms of the autism spectrum. There was no internet for my sister to consult. I think what's so wonderful about the internet now is you CAN find your tribe...the group of parents going through the same things you are.

It's still challenging of course...my sister has had lots of pushback from the schools. It's only this year that she's been able to arrange for special testing circumstances for my niece (alone in another room) which has reduced her panic about exams exponentially.

On another note, is there evidence that food allergies are more prevalent now? Or is just that we know more about and hear more about them?

[Lee]

(A bit off topic, but...)Can you imagine a US school offering walnuts and gorgonzola? I'm going to laugh about this all afternoon.

Paola, do Italian schools ever offer chicken nuggets?

[Nutmeg]

It was awesome to see everyone, and good to know andrea's kid is as shy as mine!

I am at the bottom of the cliff at this point with respect to maybe some kind of language thing and have been scaling the cliff since the nugget was 3 months old, and just today after nebbing him last night, twice in the middle of the night, and this morning I had to run to daycare so I could bring his meds because he couldn't eat lunch or take a nap because his asthma is so bad... and frankly I'm feeling a little frazzled about it.

RE food allergies and other accommodations. I don't have to deal with most of this (except we are avoiding all nuts until he is 3 because of our various atopies and all his cousins are allergic to tree nuts)... but I'm happy to make any accommodation for other kids. I guess it's kind of the socialist in me, but I do feel we are all responsible, at least in small ways, for the health and well being of other people in our community. That said, I also don't expect much accommodation from others.

Good luck to everyone with all your various struggles. I love enu's point above, also.

[Anon]

I'd also be interested in facts on race. My child goes to a predominantly Black school (we are not Black) and there are no posted restrictions on food. I asked her teacher about restrictions, too. I don't know how this rise in allergies and spectrum disorders correrlates to race (if at all) or if there are other socio/cultural things at play here.

[Jac]

Agree with Lee - not to minimize very serious topic (we have been fortunate, and have nothing to contribute here) but am LOVING the image of Italian kidlets eating walnuts and gorgonzola. Completely cracks me up.

[Slim]

Nutmeg:
"I guess it's kind of the socialist in me, but I do feel we are all responsible, at least in small ways, for the health and well being of other people in our community."

The problem is that certain accommodations for some kids end up hurting others, such as the shared facilities rule or the possibility of banning dairy. If your rules let Nilla Wafers in but keep yogurt out, there's something wrong, IMO.

And I say this as a parent of a kid who had a dairy allergy when he was younger. I know that allergies are a real problem. But crappy manufactured foodlike products are a problem, too.

Also, now I want some Gorgonzola and walnuts.

[andrea2]

You know what though, Nutmeg... hes NOT usually shy at all. I think the being indoors thing with all those people freaked him out (err that and it was nap time). Literally as soon as I set foot OUTSIDE the bilding to leave with him there were a bunch of kids running around on the grass and he immediately took off and started running around like his usual maniac self with them, and it took a tug-o-war and him screaming at me to actually get him to let me pick him up and put him in the car because he wanted to play. Oh well, at least him and Eli had "fun" sitting in their cars staring at everyone in silence for a good 20 minutes.

Anyway, in regards to "the cliff" - we are staring up at it as well when it comes to feeding/growth issues. We've been passed off from doctor to doctor my son's entire life, with everyone telling us that clearly there is a problem but that THEY are not the one to help, and here, try this other doctor... until now where he's seriously FTT, and no one REALLY knows why (best guess is reflux, although no reflux treatments have helped and no tests have given us any evidence of reflux), but here we are about to start tube feeding. Even having people being accomodating for THAT (should be easy right, he doesnt eat, how hard IS it to accomodate that) is difficult. ie everyone telling us we just dont feed him the right things, or "oh he eats just fine", or hey how bout we give him whole milk (he cant handle it), or peanut butter (avoiding nuts until hes 2 at least).

Anyway, enough whining, it surely could be worse!

[lolismum]

@CtMom and others.
"Just one clarification - for a lot of these seriously allergic kids, it IS a life and death thing. Anaphylaxis shock kills you in 15 minutes with peanut and shellfish allergies, probably a lot more."
Yes, I know. And as I said, I am not at all bothered about some relatively easy to implement restrictions. Yes, a lot of kids like PB&Jelly, but there are lots of alternatives, dairy being one of them. Well, shellfish, it's not like the preschool serves lobsters on a regular basis. And has anyone heard of an epipen? I supply the PK class with a nebulizer for my child's asthma, why can't some of these kids carry epipens?

But if you come to me and say, as it did happen in my child's classroom,
" No loud noises, X is noise sensitive" (Yeah good luck with that one in a preschool),
" No hugging, physical contact (however unintentional) because Y has SID and it causes a meltdown"
"No nuts, No dairy, No sunscreen lotion even with a hint of fragrance because Z is allergic to all, severely", then you cannot be surprised if I tell you to go find new accommodations. (Which of course I never did aloud).

So we have a preshool where kids are not allowed to make noise, not move in the event of accidentally brushing up against Y, and virtually no protein and no sun protection because Z is allergic. Give me a bloody break. Then Z's parents should compile and hand out snack/lunch lists and should buy everyone a $9 a bottle fragrance free organic sunscreen from Whole Foods.

I don't mean to sound like a harsh, heartless prick. But when your child, any child, suffers from multiple problems, so much so that their ability to be involved in a mainstream classroom is going to come at the expense of every other child, then I think the parents and the educators should reevaluate their choices (and obviously that includes me as well.) Because at the end, X, Y and Z did not get the mainstream education. None of the other children wanted to play with X or Y because they reacted so severely to any noise or accidental bumping. And Z, well, the preschool teachers could not 100% control what was in the lunches (yes, not obvious cheese in the sandwich, but was it made on the same counter of a cheese eating sibling?), so they did seat and feed Z separately. How does that help these children?

[Lea]

My son is 13 months and has severe food allergies (wheat, peanut, dairy, egg). I hope and pray he is lucky and grows out of some of them, but there are no guarantees.

No one wants to be "that parent," but you have to advocate for your child, especially when it can cause a severe, possibly life-threatening reaction. My worst fear is sending him to school with these allergies and not being able to control everything and hoping for the best. It kills me to think of other parents feeling anger toward an allergic child and the inconvenience it causes them. They certainly didn't ask for it; it's just the way life is for them.

I just hope that if my son does go to school with all of these allergies, that other parents will try to put themselves in our shoes and have sympathy and do what they can to keep him safe with the food they send in. I always hate to rely on others to be accommodating to our own needs, but in this case, there really is no other viable alternative that doesn't alienate or demoralize a young child.

[Cloud]

@meggiemoo- at least one study (read the bbc's account of it here:http://news.bbc.co.uk/2/hi/health/7218276.stm) indicates that the incidence of food allergies is not increasing, but that parent's often label something an allergy that is more likely an intolerance (allergy = immune system involved, potential to cascade to a life-threatening systemic reaction, intolerance = a lot fuzzier). Other studies indicate that allergies ARE increasing (sorry, no time to go find those), but the reason remains unclear. There are lots of interesting theories, but nothing I personally would want the public health authorities to act on yet.

My personal opinion on the autism thing is that there are a lot of kids on the higher functioning ends of the spectrum that would have just been considered "odd" when I was a kid. And that I now work with a lot of those kids, because science is an excellent place for people the rest of society considers a little odd... we don't expect "normal" social skills from our scientists! In all seriousness, I have worked with at least one guy who had been diagnosed with Asperger's, and have worked with many, many more about whom I've wondered. (BTW, they all have built successful careers, and the guy with Asperger's had a long term girlfriend and seemed pretty happy with his life- I like to remember that whenever I start stressing about autism.) Of course, since autism has not touched me directly, I have only read some of the studies and not done any exhaustive research.

Is it better that the kids get the labels? I don't know. Maybe yes, because it helps the parents figure out how to work with their kid. However, I believe that we should be sure we are seeing an actual increase in issues and not just an increase in giving names to the issues before we start taking any drastic actions on the public health level. I think a lot of this is just the luck of the draw with your genetic makeup. The human body is a very complex thing. When you think about it, it is sort of amazing that any of us develop "normally".

[Eva]

My little girl is allergic to paprika, of all things. I can't tell you how hard it was to figure that out. Anyway, it's not a serious allergy like some, but if she eats some she gets painful eczema and diaper rash. The problem is it's in all kinds of (pre-packaged) things and not always listed (sometimes just under "spices"); it's also used a lot for coloring.

Anyway, she's only two, but she does go to an in-home daycare part-time, so I had to be very clear about this with the woman who runs it. Fortunately, she's a vegan Buddhist with food intolerances, so she gets it and watches labels like crazy. But then people bring out the Goldfish crackers at playgroups, etc., and I have to keep my girl away from them.

I do not want other people not to eat it; it's my role in this case to keep her away from it, since she's with me and she's so little. But even with this relatively minor food issue it can be stressful (and very limiting in terms of restaurants) and I feel like I'm being a little intrusive when I have to keep my kid from the food and bring something else and explain explain. It must be so much worse when the allergy/sensitivity/etc. is more severe. People get very sensitive about food, especially when it's something they've prepared and want to share. When I host playgroups, I try to offer whole food options (like fruit) so most people can partake, though I don't know of any kids with food issues (in the under-three crowd I run in).

[P&P]

What bothers me about the dietary restrictions is cost as well as the rigidity.

Not all parents can afford to buy things at Whole Paycheck, er, Whole Foods and expecting an already strapped public school to have refrigeration/heating facilities for kids' lunches is unreasonable.

I do agree that teaching appropriate sanitation is important; hand washing before and after eating, wiping down desks/snack tables, eating only at designated areas and times, etc. However, expecting parents to spend double the prep time(including special trips to the "right" store) and money to accomodate children is becoming excessive.

If the family really is looking at a "life or death" scenario, perhaps it is best that the child eats separately from the rest of the group or go home for lunch. I know it's hard, but turning a classroom on its head for one child is difficult as well. Teachers and schools have enough of a burden that worrying over every organic-nut-free-range dietary requirement can reduce their jobs to babysitter, not a highly qualified teacher.

[cat19]

I have two special needs kids. One has a slew of issues that have resulted in more labels than I can count, and one (my easy kid!) has multiple food allergies of varying degrees of severity.

Up to a point, I sympathize that people can find it hard to work around other children's allergies. My younger son right now can safely eat four foods plus elemental formula. Finding safe food for him as his allergy list became longer and longer was hard. But we did it. We had no choice. As it so happens, my kid's preschool is nut-free, and not free of any of his other allergens. However, the majority of his allergic reactions are not potentially anaphylactic, potentially life-threatening (IgE-mediated) reactions. We came up with safety precautions that were a reasonable compromise between his safety and others' convenience. Try and have faith that if you are asked to avoid bringing in a given food, it isn't to save another child from the horror of a daily pill; it's generally to keep them from a serious reaction. My son has taken a daily antihistamine since he was five months old. It didn't stop him from going into anaphylaxis when he was a year old after exposure to one of his allergens.

@lolismom, for those kids who are so allergic that contact with an allergen can cause a reaction, there is no pill. Daily antihistamines will not prevent a serious reaction. Good lord, don't you think any parent would rather give their kid a pill rather than feel the stomach drop every time the phone rings and caller ID says it's school or daycare, the fear that this time it's because your kid is on route to the hospital after having an epi-pen? If your child is in a class with a child with a life-threatening allergy which means he or she is unsafe if others around him or her eat that food, I understand that you can be baffled as to what to send.

I have run out of patience for that, though. That allergic kid manages to find food to eat every day all day without starving; so can yours for six or eight hours. The right of children with food allergies not to risk death trumps another kid's right to his or her favorite food or food group. My kid has four safe foods; nonetheless, if one of his classmates were life-threateningly allergic to one of those foods and could not be kept safe through handwashing, I'd stop sending it with my kid. If I'm willing for my son to go without one -fourth of his food options to keep another child from the hospital, then I don't get why it's too hard for parents who have a world of food choices available to give up a few foods out of hundreds.

Ask for help. You may well find that it's far more manageable than you think. What keeps an particular allergic child safe will vary dramatically depending on his or her allergens, whether or not they react to contact, whether or not the kids eat in the classroom, whether or not the classroom is set up for thorough hand-washing, whether or not the kids are young enough still to put toys in their mouths, and so on. Some allergic kids can touch their allergen; some can't. Some can't even be in the room with it when it's cooking; if you can smell something, tiny portion of it are in your nose, and for some kids, that's too much. Some react to trace amounts; some don't. Ask and find out.

I keep re-reading this post and thinking: I need to sound nicer; I need to be more sympathetic. But I think I'm out of sympathy right now. I'm dealing with my own stress, knowing that when we get to public school, there will be parents at home grousing that the class can't do the egg-related science experiment because my whiny little kid might die if he's exposed to raw egg. When that happens, I want to know where and what these special alternative arrangements are that I am supposed to find for my kid. If it's shutting my kid out of public school, that's illegal. If it's for preschool or daycare, am I supposed to stay home and give up my job which provides all our health insurance? Where exactly is my kid supposed to go? Or should I have psychically known that he'd be allergic before having him and not had him?My own kid isn't contact-allergic, but many of the children of the friends I've made through my child's allergies are terrifyingly allergic. It is do-able. It may not be easy. It may add to the already considerable stresses you have when you have to figure out a whole new skill set packing your kid's lunch. It may be anxiety-provoking because you truly are afraid of hurting another kid.

Then, again, ask for help. Don't take it on on the kid. Don't take it out in anger on the family that is already dealing with that type of food restriction round the clock. This is your chance to demonstrate to your child that we can show caring and concern for others; we can make sacrifices when it matters. Even when those sacrifices are as small as peanut-butter and jelly sandwiches or a slice of cheese, they can save a kid's life. I know it's hard; truly I do. When my son first starting reacting, we had to clear the house of eggs, dairy, nuts, sesame, and seafood... and I was a vegetarian. But you can learn; parents of food-allergic kids are not somehow magically gifted at avoiding common foods and finding alternative; we learned, and we are almost all willing, even eager, to teach others.

Moxie, I cannot tell you how much I appreciate your and your son's willingness to give up a food during the school day to keep another child safe. Please check to find out exactly how necessary that precaution is. Will good hand-washing work instead? Also, it sounds too as if "wet" dairy might be far more dangerous to this other child (more prone to spills etc). If so, Silk makes a very tasty soy yogurt.

[Nutmeg]

I understand that it could hurt some people and certainly replacing healthy though allergenic foods with crappy food replacement substances isn't great, and certainly isn't the only thing that COULD be done... but if the other option is that parents of those kids don't send their kid to school, is that really an option? If the allergy is so severe that they could die if they encountered the allergen somewhere? I guess the people with similar allergies could get combined so they don't interfere with the convenient nutrition of the other kids. I just don't see a realistic option other than excluding serious allergens that otherwise threaten children with serious morbidity or mortality. The criteria for exclusion and the seriousness of the reaction that qualifies for exclusion would have to be up for debate, but I think it's unrealistic to ask parents of seriously allergic kids to keep them out of school.

It could be an opportunity to learn about other foods and civic responsibility (like Shandra's example).

[Michelle]

With health issues, definitely dialogue with your school/teacher. My stepson had a liver transplant as a toddler (he's 9 now) to treat a rare metabolic disorder and last summer he spent 6 weeks in the local Children's hospital due to a rejection episode and several other transplant complications. He was finally released from the hospital 2 weeks before school. We were frank with his school administration and teachers about his level of endurance, weight loss, etc. The school could not have been more cooperative; they allowed him to go to the nurse's office and take a nap when he felt tired, allowed him to eat extra snacks, were extremely viligant about checking his temp if he seemed off, etc.

On the other hand, a couple of years ago an autistic child was placed in his class and all of the sudden my stepson didn't get support from an aide in reading/math (he had/has an IEP) because he was quiet as he tends to withdraw when he is confused/overwhelmed as opposed to the other child who tantrumed and acted out. I completely understand limited resources for special ed services but still that was not ok. Why should my child not have the support that he needs because he was quietly floundering? It took a quite a bit of dialogue with the school to get that straightened out and the next year there was a change in the special ed director which was probably for the best.

Food allergies are tough. I am lucky in that neither of my kids are picky eaters so sending snacks/lunches isn't really an issue. My stepson has a pretty severe allergic reaction to fish but luckily, he is old enough to simply avoid it and is only affected by ingestion. I do find it sad that one can no longer send in wholesome homemade snacks due to cross-contamination issues but I guess it is what it is.

It can indeed be exhausting dealing with a special needs child. For a couple of years, we took my stepson to 3 therapy sessions a week (occupational, speech, physical) in addition to monthly labwork and semi-annual liver transplant clinic appointments. And it takes longer to do his current 3rd grade homework assignments than the average kid. But we do the very best we can to make sure that he gets the very best of out of school/life given his special needs.

[cat19]

"I looked at the list, thought about how inconvenient for 3 teachers and 16 little people to adhere to it so instead of imposing my will and concerns on 16 other people, and their families, I pulled my daughter out of school on days her dad's counts were low. Washed her hands and arms and face with soap in the utility room before she entered the house and stripped her clothes. My husband is sick, it is our problem, and as much as I would like everyone in the world to help us and accomodate us, it's not possible or practical. And you know what, dying from a bacteria while taking in chemo beats having hives, so I could have really stomped my feet about this. "

I am very very sorry you had to deal with this. Had your child been in my son's school or daycare, I would have done everything I could think of to accommodate your husband's oncologist's list. I would hope that your child's school would have as well. I understand that you were unlikely to be able to count solely on that; you can't let something so important go as a given. I think your safety precautions made sense--but I wish you'd felt you could trust your community to balance your family's critical health needs against their own convenience and come up with the more caring answer.

[cat19]

"I looked at the list, thought about how inconvenient for 3 teachers and 16 little people to adhere to it so instead of imposing my will and concerns on 16 other people, and their families, I pulled my daughter out of school on days her dad's counts were low. Washed her hands and arms and face with soap in the utility room before she entered the house and stripped her clothes. My husband is sick, it is our problem, and as much as I would like everyone in the world to help us and accomodate us, it's not possible or practical. And you know what, dying from a bacteria while taking in chemo beats having hives, so I could have really stomped my feet about this. "

I am very very sorry you had to deal with this. Had your child been in my son's school or daycare, I would have done everything I could think of to accommodate your husband's oncologist's list. I would hope that your child's school would have as well. I understand that you were unlikely to be able to count solely on that; you can't let something so important go as a given. I think your safety precautions made sense--but I wish you'd felt you could trust your community to balance your family's critical health needs against their own convenience and come up with the more caring answer.

[Mudhutkenya]

As a parent of a dairy/egg/sesame/who-knows-what-else allergy toddler, I am already having anxiety about sending him to pre-school where I won't be able to watch what goes into his mouth. The fact that centers have these very sensitive and specific rules about what foods are allowed makes me rest easier at night. I know, you're probably thinking that you hope my kid doesn't end up at your school! I really wish this wasn't a life-threatening problem, but it is scary when your child breaks out all over in hives and is hysterical scratching and crying just from contact exposure. Unfortunately, only having restrictions on shared food items isn't adequate because, well, kids spill milk (as happened to us recently at a kids event). Why why why are there so many more allergic kids these days?

[paola]

@Brooke,

I don't have any stats, but I remember reading an article once in an Australian newspapar talking about the rise in food allergies.They gave a very sad account of a little 5 year old allergic to nuts who had an anaphylactic reaction and then died after holding his grandfather's hand ( grandad had been eating walnuts). This of course is very very rare, but I certainly would not want to test it out on one of my kid's classmates.

[etoilech]

I have a kid with an (unknown) allergy. He suffered anaphylactic shock, twice. Ironically, both times we were in the US, he's never had it here in Switzerland. We suspect it's either an additive they have there and not here or possibly peanuts. We just make sure we have his kit with us and we warned the school and provided them with a kit too.

Just for comparison my son is only kid in his primary school with a food allergy. They seem to be less common here, in my experience.

My son also has cerebral palsy, it affects his legs mostly. Advocating for him here, is a full time job and we've fired numerous doctors, physiotherapists, you name it. It is so hard, especially when you live somewhere that is SO behind.

Oh and the kids gorgonzola and walnut eating kindergartners... the kids here make tea and have had fondue for snack time. Crazeee, but hey different strokes. ;) A parent got reamed for sending a banana as a snack - too high in sugar. Um, yeah. Too far.

[cat19]

Sorry for the double post above.

And yes, I've heard of epi-pens. We go nowhere without them.

As to contact, one of the difficulties is that once a food protein is around, for severely allergic kids (much more allergic than my son), they can get it on their fingers and accidentally touch their eyes or mouth, and then it's in their system. So while some of those kids aren't going to react severely to it being in the air or near them, the presence of the allergen may put them at risk from moving that food protein into their eyes or mouth. Nuts and seafood can be especially dangerous for this, as it can take very very very small amounts to cause a reaction in a severely allergic child.

[CG]

Not having a food-allergic child (as far as I know) and not having sent him to daycare/preschool yet, I don't know a lot about this issue, but I do have a question. We've been focusing on school or school-type environments in this discussion, where even if people grumble everybody knows the rules, knows who's allergic, and likely complies. What about the rest of the world that kids encounter? I'm not even talking about where else kids eat, but things like going to the science museum or the park or visiting Mom's office? People eat all over the place and leave food residue around and touch things that kids touch. Can this be managed? Should this be managed? What do you do?

[cat19]

Kate's give-you-some-ideas list of safe foods free of the top-8-allergens (and also free of sesame) that my five-year-old will eat with joy, not just because they're safer for other allergic kids:
* apples
* bananas
* oranges
* grapes
* grapefruit
* raisins
* dried cranberries
* broccoli
* peas (can blanch ahead of time and pack cold; my kid will eat them as finger food)
* tomatoes
* cucumbers
* carrots
* pickles
* celery (can fill with the sunflower seed butter listed below and top with raisins)
* cold cuts rolled up or cut into shapes

Peanut butter alternatives ((make sure you tell school ahead of time, as they look like peanut butter and teachers may not believe child that these are not peanut butter without warning):
* sunflower seed butter: make sure to get a sunflower seed butter with added sugar as those without are too bitter
* soy butter; Walmart carries a very affordable brand.

Dairy alternatives:
* Silk soy yogurt (the best of the soy yogurts, hand down)
* Tofutti cutie "ice cream"-style sandwiches and Marry Me Bars: good enough for almost any kid to ask for more, whether or not they usually eat dairy
* all-fruit no-dairy popsicles; Edy's makes some and you can make your own by freezing most juices or freezing applesauce

Processed food alternatives (some of which are pricier):
* anything by Enjoy Life brands, including their Snickerdoodles cookies
* Cereal: Puffins, Gorilla Munch, Erewhon rice cereal

My younger son used to be able to eat Oreos (which are dairy and egg free, surprisingly, though they do include wheat).

If you need to avoid mayonnaise because of a very-egg-allergic kid, Vegannaise and Nayonnaise both make egg-free versions.

[Jen]

I guess I am in the group of folks that think -while it is very scary to deal with children with life-threatening allergies and other health issues and I am very sympathetic- I think those parents sometimes expect too much from the other parents and the schools. While I'm willing and happy to make some accommodations, I draw the line at having to go to specific (and expensive) stores to get special foods. I'm sorry but in my view the family's needs with the special child do NOT trump all else. If that's how you feel, perhaps alternative arrangements need to be made for your child.

I'm sorry, I know it sounds that I'm not sympathetic. I am. But, man, my own life and stresses, etc., etc., . . . I just can't do what some of the parents on here expect. I just don't have enough of me to go around. And, while it may seem like small concessions to you. For us (with no help and no family in the area), it is not small.

Flame away.

[cat19]

"People eat all over the place and leave food residue around and touch things that kids touch. Can this be managed? Should this be managed? What do you do?"

You take epis with you everywhere, you leave the park if you see a kid with peanut-butter-y hands climbing on the playground equipment, you watch your child continuously, and you pray a lot. Maybe you avoid too-risky situations for your kid; for example, we don't take my kid to the outdoor stand that sells fried seafood where the benches are likely to be covered in seafood protein.

And I count myself as blessed that the teachers and parents at my son's preschool work to keep that a comparatively safe space for him.

[ramy]

CG--my daughter has broken out in hives from sitting in a shopping cart after a child ate something dairy in the seat. It wasn't fun.

we've only had one anaphylactic (sp?) event--she ate my yogurt (this is how we found out she was allergic to milk). It wasn't fun and I don't wish it on anyone.

I dread getting a peanut allergic kid in her class b/c at school meat is almost always paired with cheese so she takes a pb/honey sandwich on those days. It happens, we'll deal with it. Luckily dd's allergy is mostly contact unless she eats it and she's VERY aware of what she can and cannot eat (and how she needs to ask if she doesn't recognize the food).

re: increasing allergies. For the firstl 10 years or so the daycare center DD goes to was operating they only had 1 food allergy kid at a time. Last year when daughter began, there were suddenly 12 new kids with milk allergies (plus the milk and eggs girl, a nut allergy, etc). It seems like daycare centers are really only beginning to deal with food allergies on this new scale (at least down here). The parents and the administration / teachers / cook had to come up with a protocol to organize and keep track of everything.

[flea]

I find the sociological issue with food allergies kind of fascinating. My daughter has attended two majority-minority, Title 1 (majority low income) schools, each of which has 300-400 kids, so would reasonably have up to 10 kids with peanut allergies alone, given national rates. At neither have I ever heard anything about food allergy policies, sending food in for the class policies, etc. Not a peep.

[cat19]

I don't think of Walmart as a special store. You can buy fruit, vegetables, raisins, and Oreos at any supermarket. Oreos are even available at convenience stores.

I don't get how it's asking so much. Truly, my son's classmates give up foods with nuts listed as an ingredient. How hard is that? They wash their hands after eating--which is a good precaution anyways. Is that unreasonable?

As to giving up dairy, I'm sorry it's hard. But I don't think it's too much to ask if the kid in your kid's class is likely to end up in the hospital to preserve your kid's cheese sandwich.

[CG]

@flea, I'm curious about that too. My perception (not based on any real data) is that this is primarily an upper-middle-class phenomenon. (Maybe I think this because, eh, most of the people I know fit into that category). Is it that lower income kids don't have the same prevalence of allergies, or that their parents aren't out there advocating for them? Or neither? Does anyone know of any studies on this?

[Brooke]

I seriously, honestly believe that all cases of death which were originally thought to be due to accidental contact were later shown (without all the media fanfare of course) to be ingestion issues.

My biggest issues with food allergies are that non-affected families are encouraged to over-react, sometimes to their detriment (see only processed food/really expensive alternatives). If there is an *actual* child with an *actual* allergy who needs special accomodation, it makes sense that schools tell parents that and explain what needs to be done. But blanket no fill-in-the-blank rules are dumb. Because they don't address actual needs so are unduly burdensome and are more likely to be ignored.

There is a girl in my daughter's class who is allergic to peanuts and has an Epi-pen. So I make sure we don't have peanut-y food before school, even though we wash hands when we get in. But I'm not really that worried about things which may have touched nuts, since no one in her unit is allergic to nuts. Does that make sense?

I think most parents really are willing to make reasonable accomadations when they are informed what they are and why those rules are in place. But someone might be allergic to one of these things, so you can't bring them in for your own child doesn't fall into that category for me.

[Amy]

We found out recently that Chik Fil-A nuggets are cooked in peanut oil (who knew?) so they are big no-nos to bring to school. Makes me wonder what else is cooked in peanut oil that could be causing seriously threatening situations for allergic kids.

[CG]

Brooke, aren't you supposed to be having a baby right about now?

[hedra]

@lolismom,... wait, no, I will have to come back and comment tomorrow. Right now, I'm just so stunned by your suggestion that an epipen is the answer (um, they probably DO have one there... do you have any idea what you're talking about? Because it sure sounds like NO.).

Just. Wow.

Okay. I have to go, but one small thought. It isn't a cliff if you're looking at it right. It's not smooth going, but it's still straight ahead. Tilt the view, and it's just a long rough walk. One step after the other.

[Brooke]

CG-ha! 38wks now. So, yes, sometime in the next month. Can you tell I'm almost out of work to do and just waiting?

[Sharon aka Mommie Mentor]

I want to share a true story from one of my clients. It's amazing and may help some of you, who knows. Instead of writing my version of her words I'm including what she wrote to me. I know this family well, and this is remarkable. Again, this story doesn't apply to all situations, may not apply to any one reading here, but it might, so it's worth sharing.
She has asked me to spread the word and use this story as often as I can to inform parents.

Her story.
"If your kid has allergies, asthma, doesn't sleep well and you can hear them breathing, check their adenoids and get them out ASAP! In just 4 short weeks, (after having his adenoids out) my son is no longer allergic to ANY foods!!!!!

He went from not being able to eat 20 things (runny nose constantly) to being able to eat anything (milk, wheat, etc.). Everyday his mood improves. He's become more talkative in social situations, more easy going, better listening, less zoning out (better every day on this one), laughing more, more willing to try new foods, eating better, better eye contact, no more bad dreams, sleeping better and more compliant. Seriously, I can't believe the difference! His teachers are saying the same things, which is great to hear. The pediatrician now agrees with me that my son's battle with Asthma, since he was 6 months old, was likely always his Tonsils and Adenoids and that the Asthma medicine was treating the problem."

Amazing, and who knows this might help some of you.