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

[rudyinparis]

Hmmm. Well, isn't the resurgence of breastfeeding an upper middle-class white thing? So I think the answer is obvious: breastmilk causes autism and allergies.

I am kidding. I am so, so kidding.

And I am also very interested in the class/race issues around food allergies and disorders like autism.

[Cloud]

I'm reading all of these posts and thinking it is sort of sad that we've gone the direction we have when Moxie was looking for support for the parents of special needs kids.

Being the parent of a kid who (as far as I know) only has to handle the regular all-consuming needs of a clingy toddler, all I can say is "well done!" and send internet hugs.

Pumpkin goes to a nut-free day care, which is a non-issue to me, since I have a strong family history of allergies, and therefore won't be feeding her peanut butter anytime soon. She is an exceptionally picky eater, so I can see how getting told about a new class of foods that I have to avoid would be stressful. I think that if one of her classmates was diagnosed with (for instance) a dairy allergy, I'd be really grateful to see a list of known "safe" foods that toddlers might eat and a list of common "gotchas"- foods that would seem safe to someone not reading the label as if their child's life depends on it. It would make the request seem less overwhelming at first.

It seems to me that if you are bothered by the restrictions that public schools have to put in place to accommodate all children, then you are free to move your kid to a private school that is allowed to be less accommodating. Everyone always says that the parents of the special needs child should move their kid (I've never been sure to where- a little school solely for allergic kids?) but I actually think it would be better to do it the other way around. You don't want to avoid these foods? OK, well, go do a search and find a school that will allow them. Is that too much trouble? Then I guess it wasn't as much trouble as you thought to avoid those foods. I have a vague memory of a saying that goes something like "a problem is only a problem if it is worse than the solution."

Which is not to say that you can't complain with your partner and/or friends about the extra work required to handle the problem or find the solution!

[lolismum]

@Lea
"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."

No one is feeling anger towards your child. We are all feeling anger towards political/special needs correctness that has gone so far, that it only worries about the special needs childs' needs without finding any constructive way to resolve the problems. One cannot even propose a solution that accommodates most children, most of the time, well, that would be insensitive to the needs of one particular child, sometimes. There are reasonable requests, and then there are those that are very far reaching. And those are not small inconveniences as you seem to believe. It's a small inconvenience for us to leave the nuts out of the brownie, it's also a small inconvenience for my child's classroom to impose more handwashing rules, alert me if any child has a severe cold/flu or any other contagious disease promptly because my daughter can carry it home to her father with cancer. But it is completely crazy to ask the classroom to sequester any child with a runny nose away from my daughter at all times, ask all children to bring in daily clean "school clothes" to change into, for the teachers to zap everything in sight with clorox multiple times a day, as our oncologist suggested. Those classrooms do not have the manpower, the time, the resources to deal with it. It is entirely silly to believe these are "small inconveniences". And your child is not the only child with an allergy. Take 15 -20 children in a classroom, cumulatively there will be so many rules/regulations about what to eat that we may as well give our kids seaweed as lunch.

[Valerie]

I wanted to add another data point to the question raised by Flea. My son attends a Title 1 school as well, and I have never heard a thing about allergies. Parents are incouraged to bring in food for parties and birthdays; we've attended several events with food served and never heard anything regarding avoiding foods due to allergy.

On a different note, are there other parents out there with ADHD type kids. My son looks like an ADHD kid when he's bored and understimulated (which he is often at school). I get a lot of negative feedback from his school, but I hate the idea of medicating him to fix a problem I don't think he has.

[cat19]

"And your child is not the only child with an allergy. Take 15 -20 children in a classroom, cumulatively there will be so many rules/regulations about what to eat that we may as well give our kids seaweed as lunch."

So has this happened? I'm interested; yes, I can imagine a theoretical situation where a class might have four kids with different life-threatening allergies. Is that what you're dealing with? Because if not, then I think it's disingenuous to complain about a hypothetical possibility.

I do think that barring entire groups of food just in case with no allergic child in sight is over-reactive. AFAIK, that has nothing to do with the type of situation Moxie brought up. It also has nothing to do with the types of accommodations I and other parents I know have had to fight for in order to keep our kids alive and in school.

And it has nothing to do with ridiculous schools banning bananas as too sugary.

Please, please, can we separate food restrictions imposed to keep particular named kids safe from food restrictions imposed of any of ten million other reasons? And from hypothetical overlapping sets of restrictions that could in theory occur but that no one here can actually say they're dealing with?

[Lemon]

@ Lolimum: "I don't mean to sound like a harsh, heartless prick." That's funny, 'cause that's EXACTLY what you sound like to me. (They are your words, not mine.) I hear that you are under a great deal of stress with you own family situation, but maybe you should reread your posts when you are in a better mood or under less stress, and try and think about what you actually sound like to parents of special needs kids. I am interested in knowing how much you pay for preschool. If you are so unhappy, why don't YOU find a new school? I look forward to your answer.

An hour ago I picked up my peanut allergic son from school, and his teacher handed me the Benedryl that I provided for him and quickly told me that it was illegal for her to give it to him, and the school would send home a letter. This encounter took less than 20 seconds. I called the school when we got home, and there was no one to talk to; "everyone is in a meeting." My son is 3 yrs old, and this school goes to the 8th grade. "Cliff" is an understatement.

[lolismum]

@hedra

Yes, obviously an epipen is not the answer to all allergy problems. Not that I suggested it was, it was one of the things I listed as reducing the likelihood of a child having problems and other children from having to over-worry about where there hands are.
My main point is and was that we cannot react to children with needs by imposing regulation after regulation on other children in the same classroom. So take your patronizing attitude elsewhere. I have a child with asthma and a husband on the verge of life and death with cancer, and I rely on the community's help and accomodation as well, and I am extremely grateful for it. But I do believe that at some point, when my family's needs are special accommodation are so great, I cannot ask everyone else to suspend their daily function. My family's needs do not trump all else, no matter how heart breaking the situation.

[Cloud]

Asthma is more prevalent in lower income environments. It could be that the tendency to have an allergy is the same across income levels, but that the specific allergy you end up with is somehow correlated to income. How, I don't know, and I haven't even got a wild-a$$ed guess as to why food allergies would show up more in wealthier kids. The theory on asthma in lower income kids is that they are exposed to more airway irritants because they tend to live in more polluted areas.

@lolismum, at the risk of sounding incredibly rude, I think that the key difference between the scenario you describe with your husband's chemo and a kid with life-threatening food allergies is that your husband's chemo is a limited time thing- he will finish the chemo, so you are making special arrangements for your kid for a relatively short period of time. The food allergies won't go away, so you're asking those parents to make arrangements for the entire school career of their child. And what arrangements do you think they should make? Home school?

[Julie]

I can definitely empathize with the parents who struggle to find ANYTHING that their child will eat, then to find that food on the restricted list. Feeding our children goes to the absolute core of humanity.....millions of years.....much like hunting and gathering and nesting tendencies. No wonder it's such a hot-button topic - for both sides.

My son thankfully does not suffer from food allergies. He does, however, participate in a highly self-restricted diet. Which makes feeding him difficult. I also know that he eats differently (read: better) for other people than he does for me. I know that if he got hungry enough, he would branch out more. And I hope that the parents in his preschool community would tell us about any severe allergic reactions that might be in his class/school so we could accommodate them. It would be awful to have to eliminate cheese from his diet at school because it is one of the only forms of protein he will eat. However, I know his little body would kick-in at some point and either compensate when we are at home, or (gasp) branch out and try something new.

I find often, when I release some of my tension about issues, I'm much more likely to be led down a road with some new answers to old problems than I would if I held tightly to what I know works right now.

I don't think everything needs to be purchased at expensive stores. Cat19's list looks fantastic, and very doable.

And really, how much food is actually consumed at preschool (or even elementary school) during the day? As a parent of a preschooler, I'm pretty sure he could survive on water and fruit and be just fine (and judging from his lunchbox, that's pretty much what he's eating). And as a teacher at an elementary school the kids I know are much less interested in eating, and much more interested in getting out to the playground asap to get the BLUE tetherball, the BLACK basketball, or whatever they deem valuable that week.

I can honestly see both sides of the argument, but have to err on the side of the parents whose children could die. To parents whose children have a severe reaction to foods and are not getting the support they need at the elementary school level - I urge you to at least get a 504 plan (some schools may not allow food issues to be incorporated into an IEP - it will vary by district and state, but 504 plans are the catchall for pretty much everything else under the sun) in place so that legally the school MUST provide accommodations for your child. It is an ugly system, the public school system - but there are ways to make it work.

[Shandra]

I think a lot of the lunch thing is because we've been culturally (and corporately) trained to believe that a lunch is XYZ. Particularly when XYZ involves corn chips and Wonder Bread. In which case you do need the high-fat protein to balance it out.

My mind was blown on this one when I sent my son to daycare.

Mind you, I already lean towards the hippie end of food. But their meals have to have halal, kosher, and vegan alternatives plus they have several kids who are lactose intolerant (as much of the world's non-Western population is). And no nuts.

So they have curried potatoes, peas, and chick peas... all the components and the curry are separated and the kids mix their own. And rice and 'peas' (beans) and veggie jamaican patties, and broccoli tofu stir fry over brown rice. Veg/potato samosas. Roll your own bean burritos and fajitas.

And the kids eat it up, because of the Peer Pressure, mwahaha. Also because the teachers eat those things. Also because the kids eat those things. And probably because they separate out a lot of things, so there is a lot of choice available. (Always veggies and whole-grain bread, for example.)

Did you know broccoli has 5 g protein per cup? I did not. Green peas - the sweet kind - have 4 g protein per 1/2 cup. Raisins - 3 g per 1/2 cup. An egg only has 6-7 g.

Anyways, that helped teach me that we have so many hangups about lunchboxes. Sure, there are reheating issues (refrigeration issues can be dealt with with a frozen ice pack or juice box and an insulated bag), but I can see down the road we can do salads and dips and pitas.

I do think it takes the village though. Kids eat PB&J not because they are somehow wired for it (just try to find PB in other areas of the world) but because we train them that way. Maybe we are a transition generation.

I'm eyeing bento boxes full of cheap leftovers for our future. :)

[Mom2Boys]

T is getting ear tubes and his adenoids removed tomorrow. No food intolerance/allergies that we know of but goodness the never ending cold with resulting ear infections. Think good thoughts for him if you are so inclinded.

My heart goes out to all the parents struggling with these various issues. I'm accommodating by nature but it seems to me that if by taking a little extra care with the food I send to a pre-school or school would make life a little better/safer for the other children that my child spends time with day in and day out, well, I'd hope that if the tables were ever turned, other people would show my child the same compassion.

[CG]

"I can honestly see both sides of the argument, but have to err on the side of the parents whose children could die."

Julie, you've hit the nail on the head. That's not to say I won't ever grumble about food restrictions if we end up having to deal with them at school, but it is important to put things in perspective.

[Betty M]

The problem here is that the rules are imposed without there being any need for them. OK if a child is going to die fine no nuts or whatever but once the child has moved on then surely bring in the nuts. Why the blanket policies? I know of kids who have had to go hungry because they had the gall to bring something in without the package to prove it was nut free and the one child with the mild nut allergy in a different class was not even in school that day.

[Brooke]

I think everyone should lay off lolismum. Because people are treating her as though she is the problem. I would say she is clearly illustrating what is a much bigger institutional problem. I would wager that having a very, very ill husband at home makes her much less likely to have the time and energy to be constantly bombarded with new demands about how to feed her child (especially on top of having to teach her kid not to be loud or touch other children in the room). And to do this without adequate facilities or help from the school and to have the added pressue that she is going to be KILLING someone else's child if she doesn't do it perfectly, I can see how that would be too much.

Look, we don't know what everyone else is going through, so although you might think that researching and doing all this is no big deal, it really might be too much for someone else. Try to buy "safe" foods on WIC which don't require a lot of prep work and your kid can eat during a short lunch break.

So yes, more lists of safe foods are good (although Oreos don't count as lunch in my book, but they certainly work as treats) as is encouraging schools to actually help other parents follow the rules instead of just imposing them. As is figuring out ways of getting both safe and healthy foods into schools.

[anonymous today]

Are all of you making statements along the lines of "of course I am avoiding peanuts/nuts/etc/what-have-you for years" aware that this practice has been shown to increase the incidence of allergic reactions? Be careful or you could perpetuate your family's problem to new generations.

And if an allergy is not of the IgE/allergy/etc type, then it is not an allergy. It is an intolerance, and I would go so far as to say it would be impossible to have a reaction without consumption of the food.

[shirky]

"participate in a highly self-restricted diet"

ha! I love it! mine can suddenly say "I no like it" and he's getting his mileage out of that phrase, I tell you what. I hope that there is a healthy school lunch when he goes to school so some professional has to monitor all this no dairy stuff (I'd mess it up) and also because I kind of admire, kind of hate the people who have a hi-res photo of a rainbow-hued 'bento box' every single day...it's all I can do to find 2 socks that match, I am not cut out for the Lunch as Art movement, that's for sure.

[David Elsewhere]

wow that's the first I have ever heard of non dairy non nut class. I figured that if an allergy was THAT severe, the parents would just home school their kid. I'm sure there are programs that can help with that.

[Michelle]

I have a friend who is home-schooling because her kids have severe food allergies. And I think that is just sad. But with some of the comments I've read today, I can't blame her!

And...hello? Even if an allergy isn't truly life-threatening...what human parent wants to cause some kid to get covered in major welts/painful hives/have trouble breathing/panic, etc.?

We do a lot of hummus sandwiches and "roll-ups" (tortilla wraps) with coldcuts and veggies but no cheese. Almost every day. My daughter also apparently really likes rice and black beans...so when I make it for dinner, I set aside some for lunches. Also, cous-cous is sold cheaply by the pound where I live, and cooks in 5 minutes. I mix it with leftover chicken and one or two of the few veggies my daughter likes and send that in her lunch.

[cat19]

"Try to buy "safe" foods on WIC which don't require a lot of prep work and your kid can eat during a short lunch break."

I agree, it's crazy. When I was on WIC and my son was small, the only things they would pay for that he and I could eat were beans, juice, and cereal. But that's a problem with WIC, not with kids with allergies.

"I figured that if an allergy was THAT severe, the parents would just home school their kid. I'm sure there are programs that
can help with that."

How lovely an idea. When you find the program that pays rent/mortgage and utilities, provides health insurance, and leaves enough to have heat and food when someone leaves their paying job to homeschool a kid, please let me know. Until then, I think such parents are entirely reasonable to think that the taxes that provide an education legally guaranteed to every child in the US should do so for children with allergies as well.

"if an allergy is not of the IgE/allergy/etc type, then it is not an allergy. It is an intolerance"

Contemporary medical wisdom is that allergies involve an *immune system response,* whether mediated by IgE or by an as-yet-unidentified substance. So according to both my son's allergist and his gastrentrologist, what he has are non-IgE-mediated allergies that involve his immune system. They are not intolerances.

In my son's case, some of his IgE-mediated food reactions are potentially life-threatening; his non-IgE reactions (for which we have asked for and received no accomodations, BTW) are not life-threatening.

I do think lolimoms has the right to expect support and help from her child's school/daycare, including help in providing a list of safe and age-appropriate foods. (My older kid actually does eat and enjoy seaweed, but I didn't see the point of putting it on my list.)

And to anyone who has faced such a list of food restrictions, if you're not given a list of safe foods, then ask for one. Ask if you can brainstorm ideas with the parents of the food-allergic child.

I should also add, to supplement the poitn I made about Oreos, that you need to check the label of the Oreos you buy; US Oreos in the regular-package size in my part of the country are vegan; I understand that Nabiscos does make some Oreos abroad that are not vegan... and I have never tried the small package size, plus they're adding flavors all the time. So don't rely just on my word; check before you buy.

[flea]

Another thing that strikes me when parents start to talk about food allergies is the level of fear that consumes them. It must be terrifying to see your child (or even a stranger!) in anaphylaxis, or having a skin reaction that you fear my lead to anaphylaxis. But according to the epi-pen people (on their web site), only 125 people a year die of anaphylaxis caused by food allergies (all foods, all ages) in the US. The numbers for insect stings and penicillin allergies causing death by anaphylaxis are much, much higher (75% of anaphylaxis deaths are a result of penicillin, more than 4000 a year in the US, again according the epi-pen citing medical studies). But it's the food that causes the fear. I wonder if it's because of the importance of food and food purity in our culture, and the feeling that we should be able to control what our children eat?

I think the reason this issue is so contentious is this level of fear. The people who are afraid are truly, and seriously, afraid, but the people who have no or limited experience with food allergies 1) have trouble understanding what the fear is like and 2) may feel that the fear is exaggerated (since there are so many people who say "I am allergic to X" when what they really mean is "I don't like it/it makes me gassy.")

[hush]

I've been known to come off like a "harsh, heartless prick," too. Let's be real here: for better and for worse, the world is not the same one we grew up in. Now every third family has some challenging issue. Abnormal is the new normal. But guess what: it's not about us against them. That never gets us anywhere. Can't we be gentler with one another?

Personally, I will not take chances with the health of other people's children, let alone my own! I don't want that kind of LIABILITY. This is also why we vaccinate. If it means I might have to get creative and figure out a way to bring a lunch that is ***healthful for everyone in the class***, then so be it. It's the de facto tuition we pay for living in a diverse society. If I don't like it, I can homeschool.

[Laura]

Lots of doctors (family practice, peds, etc.) in the family, so I've heard their theory about increased prevalence of life-threatening food allergies in wealthier populations. It has to do with differing diagnosis rates and overzealous physician management, not a real difference in incidence.

In affluent communities, parents have access to good preventative care and often have their children allergy-tested at the first sign of a reaction (rash, hives, vomiting, etc.) Allergy diagnostics are imperfect and it's very difficult to predict how severe future reactions will be. To err on the safe side, strict elimination/restriction is prescribed.

Affluent families also have the resources to implement a restricted diet and to advocate for a safe environment at school. Poorer families, in contrast, can often only afford (logistically and financially) a trip to the ER when something is life-threatening. Most food allergies go undiagnosed and families learn through experience to avoid foods that cause problems. The issue never makes it to school/community advocacy level, so you don't get the widespread restrictions.

Interestingly, we don't see an epidemic of life-threatening allergic reactions in poorer school communities due to lax food protocols. We should, if the true incidence of severe food allergies is not dependent on socio-economic status. An interesting test case would be to suspend all restrictions in a previously highly restricted environment and see if there are any negative outcomes. But, what parent in their right mind would sign up for that?

If, in fact, the allergists are being hysterical in their recommendations, we need to push back at the medical community for better diagnostic tools and evidence-based precautions. How sad would it be if families on both sides of this issue are being put through all this just for physician CYA.

[anonymous today]

cat19 - speaking as part of the contemporary medical community, another part of the comtemporary medical wisdom is that it is usually wisest to agree with parents when it doesn't really matter and phrase things in ways that will make them go away happy.

[Cloud]

@anonymous today- actually, the studies are inconclusive on the benefits of delaying exposure to allergens. Some show that it helps, some show that it makes allergies more likely, and some show no effect at all. I have read the studies, because my history of allergies makes my child more likely to develop food allergies, and I wanted to decide what I thought I should do to help minimize that chance. What I learned from that review of the scientific literature is that we just don't know what parents should do.

The only food I don't feed her is peanuts, but I do not try to exclude any cross-contamination, etc., because I have no evidence of an allergy. I made my decision based on the fact that peanut allergies often present as very severe from the first exposure and that avoiding peanuts is pretty easy right now. Also, I figured we could wait until she was able to tell us what was wrong if she did have a reaction: "mommy, my throat is itchy" is a lot more informative than the general screaming we still get at 18 months when something is wrong!

Beyond that, I won't worry about food allergies unless they become a problem for us. But I do keep children's benadryl on hand at all times.

[lolismum]

@Lemon, " I am interested in knowing how much you pay for preschool. If you are so unhappy, why don't YOU find a new school? I look forward to your answer."

I imagine you expected me to say I pay diddly for preschool, and you would be wrong.

Well, Lemon, here is your answer. I pay $1200 a month for half-day PK, at a private school, where the median family income, for non-scholorship students is, $350,000 annually. So there goes your theory. The preschool of which I speak had even a higher median income and wealthier parents. But while I moved cities and states for my job, and while we waited for a position to open up in PK at the aforementioned school, my daughter attended a public preschool, 18 kids, 1 had a nut allergy, but there was no blanket regulation. So my 3 data points suggest, the more affluent the parents/family, the more demanding they are about imposing their will on others. And yes, I did change schools from one to the other because the rules and regulations were becoming ridiculous. The public school had its host of problems, but none had to do with limiting food exposure.

And @paola, my brother is married to an Italian and lives in Italy. The first solid food his kids ate at the age of 6 months was parmesan. When my niece was in preschool she had roasted garlic with spinach. Cracked me up.

[abby]

gah, this is such a contentious issue. we've got a 'severe tree nut allergy' in my son's Kindergarden class, and we were only notified the night before school started with a letter. I actually knew because I had spoken with the mother earlier that week, so I was prepared, but it was so unnecessarily stressful. I also have a child who really doesn't have a huge list of foods that he will eat, so if there are restrictions, I need time to prepare (earlier in the summer he was in a nut free camp, and I found a great peanut butter substitue, but it took me a few days of shopping to do so). Almost all the stuff I had in terms of snacks were out, so I had to find alternatives. I am happy to do this, but again, it takes time. the worst part for me, was no one (not even the mom, truthfully) was great about giving me a list of either things to use or avoid. what I wanted was "here are the things to be careful with and check the labels, bread, crackers, etc., instead I felt like I was on my own, never really sure if something is ok, or not and just hoping that I'm doing my part.

[Gina]

Late to the game, but I had to chime in here. My 22 month old son is anaphylactic to eggs and sesame and severely allergic to garlic, black, pepper, and cantaloupe. He attends daycare 2 days per week in a class of 15 other children. He has a child in his class who is allergic to tree nuts, eggs, dairy, and wheat. The school does not restrict what children bring in their lunches and I am FULLY in support of that policy. Why? I simply could never trust other parents to be as vigilant about ingredients as we are and having some sort of “allergy-free” policy would create a false since of security. People who have not dealt with food allergy simply have no idea of the vigilance it requires in reading ingredients, avoiding cross-contamination, etc. Instead the center enforces a strict no-sharing policy along with a strict policy of washing hands, faces, and tables after eating.

And now for the PSA portion of my comment. For all the parents out there…please never use the term “food allergy” for your child unless your child has a diagnosed food allergy. Intolerances, while they can be severe (and we know, we have some of those too) are not the same and confuse the issue for other parents/daycare providers. If you think your child has a food allergy you need to get them tested if they do take it seriously and carry an epi pen.

[Caroline]

So interested in the question of why all these allergies. Saw an amazing bit on 60 Minutes a while ago about a nutritional supplement saving loads of babies and kids in Africa - and it's called Plumpy Nut. Because it's made of peanut butter, among other things. And they feed it to babies. And all my mom hackles go up, just seeing a baby eat peanut butter. When asked about nut allergies, the Doctors Without Borders pediatrician said that they're pretty much unheard of there. Huh?? So what's going on here?

[Shannon]

Just a teacher's perspective on this one... privacy laws would forbid me from telling other parents which child is allergic and how severely. Back in the days when I taught PreK, we would invite parents of special needs (of any kind) children to talk to the class (very informally, like during circle time) about what was going on and how we need to help the child(ren). I would also encourage parents to talk to each other and make it clear to other parents the severity of allergies, etc. But, unfortunately, if the parents didn't want to do this, there wasn't much I could do except note that the classroom had to be "nut-free" etc.

[Lemon]

@Lolismom - I would like to tone it down with you, if you are agreeable. I have too much respect for Moxie's site to be involved with any topic that goes down in flames. Can we please agree to watch our language and our tones?

I was irked when I responded to you, and actually did not assume that you attended a free school. Although I can certainly understand how you may have read it that way. It does not surprise me that the tuition at your school is high - people with special needs of XYZ kind who have means will sometimes buy their way into a situation which makes them feel that their child is more safe. In my case, I am spending a much more modest tuition on my son. I have never made any special requests to accommodate his peanut allergy, other than he sit at the nut free table (within the cafeteria where many students are eating PB&J's) This was something they offered, and I happily accepted. Today they sent home his medication, saying it was "illegal" for them to give it to him. Which is crap. Tomorrow I get to go to the school and find out what their "plan" is if he should be accidentally exposed to peanuts. Apparently, this plan does not include drugs which is ridiculous. So I am sensitive to the topic today, and your comments read in an extremely harsh manner to me. As extreme you think that the rules and regulations are in your school (or former school).... you view points are/were coming across in the opposite extreme.

"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."

B/c of privacy issues (my state has very strict HIPPA laws; no one is allowed to share diagnosis of one person with a group of people.) So really, who are you to judge who the "normal"" children and their parents are?

And fwiw, I'm sooooo tired of the stats that get thrown around: "only 120 people died last year" or whatever the number is. Tens of thousands of people per year experience anaphylaxis reactions, which can lead to a life threatening situation if not treated. How many people are saved from death by heart attack by defibrillators? Epipens and benedryl are carried by all the food allergy people I know. I have them stashed all over the place.

And especially with food allergies, parents are "paranoid" b/c they might not be worried about this reaction, it's the next one, and the next. Because each reaction gets progressively worse than the one before.

And don't forget, we are talking about these little little kids. Who do not possess the capability to be advocates for themselves in order to keep their little bodies safe. So their parents need to send them out into the world alone, which seems so unsafe, and these parents are merely doing whatever they can to ensure the safety of their children by putting safe guards in place. And don't just blame the parents. The schools (especially the private ones) consult with lawyers to determine what protocols are put in place to reduce liability issues.

[hedra]

So, coming back with some more time, and a calmer start.

@lolismom, I thought you were being pretty patronizing, actually. An epipen is an emergency tool, and should of course be available for emergencies. But generally we like to try prevention first. That's typically already part of the plan, so it sounded like you felt that that should be it. Over, done. Emergency management as THE management. It seemed kind of patronizing to those who would like to prevent a problem, instead of just ERing anything that does happen. But it also seems that it was the way you wrote it that pushed those buttons, not necessarily your intent. Your later comments list out the intention better, so... Start over.

So, actual problem-solving. I know only two families with contact-sensitive severe reactions. One is to peanut, the other to dairy. What sounds like a big part of the problem in your school's case is that they are not set up to accommodate the intersections of real people. They're solving only ONE set of problems. This is a big issue in a lot of problem-solving approaches - it's the 'give the child everything they ever ask for' approach. Solves the child's problem, but the adults (and everyone else around) are going to be left not only with their original problem, but a lot more down the road...

It also sounds like you have been facing much more obnoxious conditions in the classroom conditions than I pictured. The families I know were very involved in trying to make this EASY on everyone else, rather than just dumping it and running, which it sounds like is happening with you?

Parents can be jerks, regardless of their family situations, I suppose.

So, problem-solving would mean communication, and making clear that if one solution just causes another problem, that's not a good solution. There should be more than one option. Sometimes that means asking the teacher if they'll pass a message for you. (So far, teachers have all been willing to do that when I've asked.)

I find I also take the side of 'children with special needs shouldn't be sidelined'. Home schooling isn't appropriate for all, and the public school system exists specifically to provide access to education for everyone. Regardless of issues, *everyone*. I know a child with leukemia who is attending school. Nobody is freaking about the accommodations, but I also know that the parents (and doctors) were really on-task on helping make it functional for everyone else, not JUST for the child needing accommodation.

(I also agree that some allergists set the parents up to fear more, pointing all the risk analysis to 'severity of risk' rather than also accounting for 'likelihood of risk' and so forth.) (and I also agree that it being food-related just completely mangles some of the emotional processing - so much meaning is tied up in food, our experience of food, etc.) (and I also think we tend to get wrapped up a lot about our kids' experience of 'normal' childhood, expecting that normal is what WE experienced, and has nothing to do with what they're actually experiencing... Halloween is coming up, and I remember how I used to get so torqued over how it was changed from all the freedom and joy I remembered, and then I noticed that my kids happen to like how it works - it is *their* normal. Mine is just weird!)(Anyway, @lolismom, I made some assumptions, and you know what that means... mea culpa. I still think you could have stated it better - your irritation came through stronger than your thinking did, IMHO - but then, so did mine.)

***

Food lists. Try FAAN or POFAK. But never trust the list, check the ingredients. And better if you get info from the teacher.

***

Emotional support for others going through the process... See my thoughts on 'normal' above - I used to worry that my kids wouldn't get to have a 'normal' childhood if they couldn't eat this or that, if they were always going to the hospital for tests, etc. But it quickly became clear that it wasn't about a normal childhood, it was about life, long-term. My greatest distress was about the not growing thing - not that they'd end up short, but that the lack of growth (zero inches from 18 to 24 months, say) meant that other systems would be so lacking nutrients that long-term dreams for the future were being wrecked before they even had a chance to dream them.

But that goes. The anger goes, the sorrow goes. They will dream their dreams and will tune them to their own lives, and those dreams will or will not come true - but they don't have the perspective of the outside to mourn what does not come to pass the way I might. So I stopped. (mostly, I still will stub a toe on a dream now and then.) This, I suspect is where lolismom actually has the most resonance in her experience - at least I imagine so... having your child's father at risk also mangles the dreams. But the future is what it will be, and we just carry forward in the new path, and try not to leak tears on our child's head, so to speak.

It is tiresome work sometimes. We're off back to another round of hospital visits coming up in November. It's boring. It's limiting, at times, especially if I've been immersed in my own life, and forget that nobody else needs to care - and I do forget. They MAY care, but they don't need to, if they care it is a gift, and it is important to not grab at that gift greedily (which I think is part of what lolismom is also not seeing in the other parents around her - I know it leaves a bad taste behind).

Anyway. I do sometimes envy people whose kids can just eat stuff. Like, just eat it, without reading anything. Without having to look it up on some FDA database, without having to try to assess whether the same kind of thing had been eaten in too great quantity over the last three days, without having to eyeball for symptoms real quick before letting them have another bite. At the same time, I'm also glad that we've got at least a good working hypothesis at this point, and that it means we do not have to deal with acid burn diarrhea, spiraling three hour rage fits, or crushing anxiety.

And there are odd bits of humor and sanity in it, too. And this really is normal for my kids. They're enjoying it, and growing (woo!) and carrying on with their dreams, so, eh, I get out of the way, and let them have their childhood the way it shapes itself, and not how I imagined it should be. (Sometimes it takes someone stepping on my toe to remind me, though, before I trip them up.)

[Slim]

"Please, please, can we separate food restrictions imposed to keep particular named kids safe from food restrictions imposed of any of ten million other reasons?"

Our center does not allowed shared facility foods regardless of whether there is a nut-allergic child in the classroom. I would happily spring for 100% whole-grain organic crackers if I could find some that aren't manufactured in shared facilities.

And while we can bring in some fruit, we cannot bring in snacks that require refrigeration.

I also think there is a considerable divide between the needs of preschoolers and the needs of elementary school children. If Moxie's son wants to give up cheese, fine. But it seems like a better practice to require kids to wash their hands after eating, regardless of what they eat.

[Diane D]

@Caroline-- I read about the Plumpy Nut bars too. The article I saw suggested that these doctors are giving the bars to malnourished children just trying to stay alive. So they don't have health care, they don't even have enough food. So any incidence of a severe food allergy-- you're not going to hear about it, because the poor child isn't going to make it long enough for it to be diagnosed. When your child mortality is through the roof due to malnutrition, peanuts are going to help a heck of a lot more kids than they're going to hurt.

I guess what I'm trying to say is that their problems swamp out food allergies. You don't hear about a tiny percentage of kids with allergies when you have a comparatively huge percentage of kids dying of malnutrition.

[Nancy]

My 2 year old son has a life-threatening peanut allergy. We are slowly learning to accomodate his needs. We carry an epi-pen everywhere. He has two at daycare as well. Our allergist advised that he avoid all nuts as well as they are often processed on shared equipment with peanuts and they have the same odd molecular structure as peanuts, so kids with peanut allergies often develop allergies to other nuts as well. In addition to the obvious, we have to avoid ice cream, all baked goods from outside our own home, and many, many restaurants (who would have thought that Pizza Hut has something peanuty in their sauce).

Long story short. A friend hooked me up with a mom she knew who had a 6 year old son who was diagnosed at about the same age as Jack is now. I asked her how she handles the social hour after church, birthdays, Halloween, family reunions etc, etc and she said "We just don't go. It turned out to be too scary and too hard to keep him safe". My heart broke a little more. How is it right that my precious, smart, funny, boisterous, defiant little boy should be denied these basic pleasures of childhood? We have to leave playgrounds regularly--have you seen the number of candy wrappers in those places? We wipe down what we can. I guess I just don't understand why you'd want to begrudge him a safe place to learn and cause him to be without even more of a normal childhood so that you can send a particular kind of food with your kid. My goodness, it is a 6 or 7 hour day. He is a real person. So am I. Saying keep him out of school seems so rotten to me. I have to work. He deserves to be accomodated and not isolated at school or kept at home.

I'm sorry that this is so long. I'm crying as I write it and right not I have little empathy for folks who find it inconvenient to change their kids lunches. I'm sure my statements seem hysterical and not a logical argument, but this is the kind of thing I expect to find on a "mainstream" website not here where there is usually so much support and love in the sharing of how we mother. In fact, this is one of those places that I count on for women who get it and believe we are all in this together. I hear your frustration at the inconvenience and potential cost of accomodation, but I really think if you remember that these are real children you might not mind so much. If you need a reminder, email me and I'll send you a picture of my little boy to carry to the grocery store with you. His might be the terrifying, painful, costly anaphylactic reaction you prevent. If he doesn't persuade you, think about the psychological detriment to your own child, who presumably you do care about, if they are the cause of that reaction.

[Nancy]

Interestingly, at my girls' daycare, one child just got diagnosed with an apple intolerance. I saw that the teachers' message board on the fridge said "(child's name) - NO APPLES" then snuck a peek at the doctor's note attached to her clipboard that was hanging next to one of my girls' clipboards (to which we add our daily sheets of instructions).

There wasn't any communication to the other parents, and the dr note specifically said "intolerance" not allergy, but it did say the child couldn't have apples, juice or anything containing apples.

So far, I haven't noticed that my girls are sensitive to anything. Knock on wood. They're 14 months old, and I've dared with giving them a tiny bit of peanut butter on toast so far. But then I got cold feet and am terrified of "giving them" an allergy. I've been scared into not giving them strawberries.

It's tough to know whether to believe the guidelines that say not to give these highly allergenic foods to little kiddos til they're 2 or 3 when you have no family history of food allergies and no personal experience with them. But reading stories here, I hope to not have to deal with any allergies, nor face other parents' reactions to having to implement dietary restrictions in classrooms.

[Lemon]

Nancy, Hang in there. I thought your email was very logical and not hysterical. It is hard, and I myself have been worrying about Halloween for weeks now. I agree with your statement that usually people at this site speak with a gentler tone and "get it." My initial shock turned to anger, but now I'm just sad. Very sad.

And I feel like somehow or another, most of the things that we covered were allergies. There are a whole other host of communities struggling to educate students in integrated classrooms. My nephew has severe CP, physical disabilities, learning and cognitive disability, behavioral problems and Aspergers on top of it. And the school system just cut out the classroom aids from the budget. My sister, who is really active in her town, was approached by many other parents saying how sorry they were... but her response was "It impacts YOUR child too, in a huge way." The one teacher has to spend all this extra time with my nephew, which takes away from her time teaching the typically developing children. And my nephew is only one of several disabled children in his class. Last year we spent months trying to get him out of the school system into a special school for disabled individuals. And the school system fought it tooth and nail, b/c they don't want to spend the $$ on it. So therein lies the conundrum. The other parents don't want your kid in the classroom b/c they are too needy, too disruptive, too time consuming, too blah blah blah. You try to get them out and it's like trying to break out of jail. And then these poor kids - what models for friendships do they have? They sense that they are not wanted. It's heartbreaking.

Nancy I hope your son is able to outgrow some of the severity of his allergy. And try Parent Hacks (web site) for Halloween ideas for allergic kids. Ironically, they had this same type of "debate" last week.

[Karma]

Nancy, hedra, and everybody else dealing with health situations for your kids, I want to support you. I was very moved by what you wrote and I'm pulling for all of you and your little kids.

As an aside, if any of my kids end up having allergies like you've described, and someone else's kid brings something allergenic to school despite our very clear warning list about OK Foods and NOT OK Foods, and then my kid has a reaction... Oh hell no!! There will be absolute hell to pay. I'm blessed with many interesting resources. That kid's parents will be held personally responsible by my family in a court of law. So all of you haters out there who can't be bothered to have some respect and courtesy for other people's kids' well-being can add that to your list of Why It Pays To Be A Good Person. Karma is a beeyotch.

[Tricia]

I can't read all of the comments right now but I have some VERY IMPORTANT ADVICE FOR PARENTS OF FOOD ALLERGY CHILDREN.

I have a daughter who is severely allergic to peanuts, tree nuts and shellfish. She's in full day Kindergarten this year and I was so surprised to learn that there are SIX CHILDREN with similar allergies in the three kindergarten classes at her school. Anyway this is my advice to parents. PLEASE DON'T ASSUME THAT YOUR CHILD'S SCHOOL HAS THE FOOD ALLERGY PROBLEM UNDER CONTROL. I was shaking on my daughter's first day of school while they were having lunch. All of the precautions I thought were going to be taken WERE NOT. One little girl with a peanut allergy was sitting in the middle of two little girls that had peanut butter sandwiches. Kids were running everywhere and to me it was like them running around with guns with real bullets. It was that scary. I left lunch in tears and went right to the principal's office and had a meeting with her and the school nurse immediately. They admitted they dropped the ball.

It's nearly a month into school I have been the one to put the policies in place in the lunchroom. The "allergy" kids table is carefully monitored and those children don't use the main bathroom, they get to use the bathroom in their classrooms during lunchtime to reduce the possibility of them coming in contact with peanut butter smears on the toilet or anywhere else in the bathroom (Kindergarteners are MESSY!!). As the children finish their lunch and line up each child gets their hands and faces wiped. And for the especially sloppy kids that have peanut butter smears all over them we put them to the side and wash them up extra well before sending them on their way.

Please, my advice is just not to assume it's being given the special attention it needs. Teachers and aids can only do so much and it's your job to make sure it's really being followed up on. If it's allowed, make it your business to stop in and see how things are being run. You might be pleasantly surprised (I hope) but you might be horrified like I was that it just wasn't really taken seriously at all. If it's a cafeteria, the allergy kids should be at a table next to the wall so that there isn't a row of kids with allergens sitting at your child's back. Ideally, kids having peanut butter should be at their own table at the opposite end of the room. They're the dangerous kids!

In my case I am comfortable now that the issues are being taken seriously and that all are on board with safety. But if you leave it to chance that someone else is making sure it's being done you may be very sorry.

One last thing, send in a book for the teacher to read that explains to children in their language what can happen if their friend is around a "bad" food for them. In my daughter's case we got the book "Allie the Allergic Elephant." It's a book about an elephant that's allergic to peanuts. You might even be able to do a google search and get a lesson plan to send in with the teacher. The kids can learn about what foods make their friends sick and believe it or not... little kids are so much more willing to help their friends than their ignorant parents are!! There is one little girl that my daughter is friends with that always had a peanut butter sandwich. Her mother always told me that she ONLY eats peanut butter (I guess they have interesting dinners??) Two weeks ago after the teacher read the book, her mother called and said that her daughter who only eats peanut butter, refused to take it because she wanted to sit at the allergy table with her friend. So, kids may change way before the parents will. :) Good luck to any parents dealing with food allergies.

And to the person who asked if it's an upper middle class thing...I don't really think so. We're middle class - not on the "upper" side. I've never had food allergies in my family or my husbands. It's a growing epidemic and it hits all classes. To give you an idea of the rise in numbers - two years ago the Kindergarten in town had two kids. Last year there were two kids, this year SIX kids and the preschool that feeds this particular Kindergarten has five kids. I hope you never have to experience it because it really sucks.

And for what it's worth, we send in our own treats for our child. If there is a birthday in the class I send in a special cupcake for my daughter to eat while the rest of the class parties. She's got a box of fruit snacks for days there is a treat that I was unaware of. I would never want or expect an entire class to go out and buy expensive things to accomodate my child. That's my job.

[Tricia]

And to Nancy, I just read your comment and it made me so sad. I'm dealing with this for a few years now and I'm much more 'experienced.' My daughter was diagnosed with food allergies when she was 18 months and it was such a scary time. Halloween was daunting to me at first but she's so used to it now it's no big thing. She gets dressed up just like all the other kids. She parties in class just like all the other kids (I just make sure to check all of the foods that are given out on the party plates and say yes or no to them). She goes trick or treating and gets lots and lots and lots of candy. She then gets to give that candy to her older cousins and she gets a few "safe" candies and then she lucks out more than the rest of the kids. She gets to cash in that candy and go to the toy store. It's only fair to buy a Polly Pocket or a Power Ranger for them when they can't get candy! (Oh yes, my 2 year old son was just diagnosed with a peanut allergy too - I didn't mention that).

Ice cream social at church? It takes a little planning but go along and have fun - bring a cooler and bring your own safe ice cream and toppings and enjoy the time.

Family picinic? Same thing. We party away and if the food isn't able to be checked then we bring something along for my daughter.

My daughter is used to it. It takes planning and it gets upsetting but she's living a normal life. Sure we don't use the indoor park across from PB Loco in our mall but there's lots of other stuff to do anyway.

It will get easier. If YOU get the seriousness YOU will find ways around it to have your child live a normal and fun life.

[AmyM]

Although my children don't have food allergies, my SIL and nephew do. I have seen one of my SIL's anaphylactic reactions to nuts and have had to make the frantic drive to the ER. Her epipen buys her about 20 minutes to get to the hospital for further treatment. I can't imagine how awful it would be for a small child to have an anaphylactic reaction at school and have to be transported by ambulance without a parent.

On the other hand, I also have a 22 pound two year old who doesn't eat very much. I don't know what I would feed him in a "no dairy" environment. He has some yet-to-be-diagnosed issue that seems to go beyond "picky eater". If I hadn't seen anaphylaxis, it would definitely push my buttons to suddenly have a list of things I couldn't send to school with him. As it is, his preschool has a no nut policy which is so ill-defined that it is only inconvenient and not protective.

[Lemon]

@ Tricia - Thanks for your post. I'm a rookie at this. Where on earth can you find safe ice cream? And I'm only asking for your own experience, it's not like I'm legally binding you to anything - I always proceed with caution even after the most thoughtful of advice. I've been trying to make it at home and it hasn't exactly been working well.

[meandmrb]

For the folks with kids with a list of allergies (black pepper, etc), do you know this due to results from scratch tests or eliminations diets or ? I wonder because I wonder what (or if...) I should have allergy testing done on my son. Before my pregnancy I was allergic to mangos. During the pregnancy, I developed contact dermatitis reactions to some detergents, and had mysterious excema patches. When my son was about 3 months old, I began to have constant problems with hives, which I eventually realized was due to peanuts (one morning after my breakfast bagel smothered in peanut butter, my mouth and lips began to itch). Since then I've avoided peanuts and the hives and excema have cleared up, but I've also begun to react to pistachios and avocados.

I'm still breastfeeding. Obviously, I'm not feeding my baby peanut butter, so I don't know what kind of reaction he might have to peanuts. I do know that he seems to be fine with avocados (introduced to him before I began to react to them, he's continued to eat them with no apparent problem). I don't give him any mango, even though it's considered a 'first food' where I live, just in case. I don't know if I should have him allergy tested or not. My pediatrician doesn't seem to really be very knowledgeable or even interested in the question. From the treats and cakes that are brought in to birthday parties at our estimulacion temprana classes (maybe like Mommy and me classes), for 6-12 months year olds, it doesn't appear to me that folks are as concerned about when and what is introduced to their babies here in Mexico as in some other parts of the world.

[cat19]

@anon today: You said: "cat19 - speaking as part of the contemporary medical community, another part of the comtemporary medical wisdom is that it is usually wisest to agree with parents when it doesn't really matter and phrase things in ways that will make them go away happy."

Well, when I used the word intolerance with the pediatric gastroenterologist specializing in kids with multiple food reactions, whom we traveled across the country to see, he corrected me and told me my child's reactions were "allergies" because they involved his immune system. I don't think he corrected me to try to keep me happy. Why would it? What matters most to me is that my kid gets medical treatment that helps him to be healthy, and I try to use the terminology I've been told is correct by the specialists we've seen. I will continue to follow the lead of the specialists we've seen who told me to call them allergies.

That said, if you want to call his reactions intolerances, feel free.

[cat19]

@Lemon: before my son lost soy and coconut, we had good luck with making homemade ice cream with soy creamer or with coconut milk plus fruit or other flavorings. You can also do DariFree, which is a potato-based milk substitute. Rice milk can work but it's pretty thin.

There are also some fairly good commercial products (many soy based, a few with rice milk or coconut as the base) as ice cream subs out there, depending on how reactive the kid is and to what they are allergic.

[Caroline]

@ Diane D, yes, absolutely, allergies take a back seat when malnutrition is involved. And good point that an allergy would probably never get diagnosed in a malnourished child. But the statement that allergies are nearly unheard of in Africa really stuck with me. Poked around a little more, found this, from an article on plumpy nut.

"While widespread distribution of a peanut-based product like Plumpy'nut could pose a danger to allergy-prone children in the United States, that is not a concern on the African continent.

"Food allergy seems far less common in poor countries than in rich countries," said Briend. "This well-known observation has been explained by different factors, but apparently, crowding and repeated exposure to infections seem to play a role."

The dearth of allergies and asthma in developing nations, and the rapid growth of these ailments in industrialized countries (registered peanut allergies in the United States doubled from 1997-2002), is largely attributed to the hygiene hypothesis, a topic addressed in an April 2002 article in Science magazine called "Allergy, Parasites and the Hygiene Hypothesis."

"The lack of intense infections in industrialized countries, owing to improved hygiene, vaccination and use of antibiotics, may alter the immune system such that it responds inappropriately to innocuous substances," explained the article.

"After several years of using this product," said Briend, "and feeding several hundreds of thousands of severely malnourished patients with it, I never heard of a place where it was a real issue."

From
http://abcnews.go.com/Health/story?id=2497593&page=1

[Julie]

I have been coming back to this post all day, thinking of a way to say what I’m going to say. Here is my best attempt, and I apologize if I step on any toes. That is truly not my intention. The law guarantees a free, public education to all children. ALL children. Of course, we think of our special day class kids when we think of mainstreaming and IEPs and Least Restrictive Environment. But, in fact, this applies to ALL kids, not just the ones with the most “mainstream” disabilities. This includes GATE kids as well. This also includes children with severe food allergies.

For the most part, I have been able to understand and empathize with all sides of the food allergy argument – except when terms such as “home schooling” start getting thrown around. Home schooling is NOT intended to be an alternative for children who cannot or do not slide into the typical “school” niche. It is a philosophical choice made by parents who believe that the schooling they can provide at home better matches their family values than the one being provided in the public system. At no time is it suggested as an alternative for children with special needs – whether the diagnosis is autism, asbergers, cerebral palsy, severe or mild retardation, or yes….GATE or even food allergies. In fact, it is against the law for schools to even suggest home schooling to families that have special needs children.

I’m not going to bore you with the legalese….you can google IDEA and LRE and FAPE just as easily as I can. The truth is that these programs, while they have the best of intentions, still fall short of meeting the needs of all children. Schools refuse admission to students who do not live in the district (here in CA) who have IEPs simply because it is too expensive for them to accommodate them. Districts are barely getting the funding promised to them by the state and federal government for children that fall within their boundaries. Sadly, this impacts our students who come from low socio-economic families the most – their schools are often the least funded, with the least qualified teachers, and the most over-burdened with class size and issues that are prevalent in low socio-economic neighborhoods. The law guarantees a free and public education. Sadly, it does not guarantee a quality one in high achieving schools and districts. And yes, getting children into special placements at specialized schools is somewhat like breaking out of jail. The number of IEPs, the amount of documentation, the number of administrators necessary at the IEP to make that decision is staggering. Staggering. The law right now is accompanied by an inordinate amount of paperwork, checks and balances, and a lot of dead weight. It is a law with the best of intentions, but man is it dysfunctional.

I have worked in schools where the special day kids are an afterthought. They do not appear on our rosters, so while our rosters might say we have 30 students, we actually have 32 or 34 depending on how many kids are mainstreamed in our classrooms. This can sometimes be problematic when space and books are an issue. For even the kids that are only mainstreamed for art, PE and music need a place to sit that is included with the rest of the class (not a table in the back by themselves) and a place to keep their materials. I have seen them forgotten when the class leaves to go on a field trip, missing class scheduled library time, computer lab, even PE. It is heartbreaking - as a parent and a teacher - to watch these children get disappointed time and again, and then pull themselves up by their bootstraps and deal with it becasue THAT is their reality.

I have also worked in schools where the special day teachers and classroom teachers communicate daily, plan together and collaborate in a way that makes the mainstreaming almost seamless. It is a lot of work, and a true dedication to the idea of least restrictive environment. These kids flourish and grow, often surpassing the goals set for them in their IEPs. And it’s not just the mainstreamed students who benefit. All students learn how important it is to accommodate those with different needs than their own. At no time is it MORE appropriate to teach children empathy and respect for differences than at the preschool and elementary school level. This is when it solidifies for children, and what a wonderful opportunity and lasting impact it has for them when it’s done well.

Regardless of what any child’s needs may be, schools are set up and intended to serve their clients – the children – first and foremost. All children…not just the “niche” students, but students with all kinds of diverse needs. It is their right to be included in all class events, outings, instruction, and social activities (including lunch and recess) and accommodated when necessary. Just like it is my right to post this long-winded post on Moxie’s blog. It is a fundamental right, not one we can pick and choose depending on how convenient it may be for the other students, teachers, parents or administrators. We are in the business of educating children. Of course, if a situation is not working for you and your family, you have the right to look for alternative placements. But you don’t have the right to suggest that others, who are trying to provide their children with as normal learning environment as possible, home school their children because it would be easier for everyone.

This is more than just a food allergy issue. This is an issue of the fundamental right all children have to a free public education in this country.

[p]

Ugh, sorry food-allergy-sufferers (or mostly just worriers, I'm guessing) -- I'm definitely, positively, absolutely with Lolismum here.

Obviously, this is an upper-middle-class phenomenon. When I was growing up, I didn't know a single kid with a food allergy. In fact, peanut butter was THE staple source of protein for all class snacks and public school lunches for all of us free and reduced-lunch candidates. No problems. No anaphylactic shock. No deaths.

I don't think Lolismum was being inappropriate or rude or anything else like that. Isn't this a forum for discussion? She's merely reporting the attitudes of a ton of parents out there, and it's useful to get some perspective.

[Tricia]

I don't have an ice cream brand in mind right now, we had ice cream sundae's for dessert on Friday and I haven't gone food shopping. Our allergy is peanut/tree nut in this house and I've found several popular commercial brands that are nut free. I've also been known to call the 800 # on containers to double check.

The Americans with Disabilities Act really covers people with food allergies also so if your school isn't complying you really need to do some reading up to see your entitlements. We are the advocates for our children but sometimes we need to move mountains in order to get them the protection they need. It's scary to send them off to school and hope they're safe and okay when they're just "normal" kids. And homeschooling them is just not the answer. They have to learn to live in this world alongside all of these hazards.

[Cloud]

@Julie, thank you for your post. I think you are right on about how mainstreaming benefits everyone. I actually had two kids in my kindergarten class who were mainstreamed (this was, um, more than 30 years ago). One had spina bifida and the other maybe had cerebral palsy- I just remember that she sat in a wheelchair and had to wear a brace. I remember them better than anyone else in that class. I even remember their names. I don't remember any "problems" or "accommodations" that were made, although I am sure there were some. But I must have learned something from them, because years later, when a guy I met in college had spina bifida, I knew what it was- and I don't remember ever meeting anyone else with spina bifida.

And to the Nancy who was worried about "giving" her kids food allergies, I wouldn't worry. I only worry a little bit because I have a strong history of allergies in my family. If you do not have a family history of allergies, the chances that your kid will get a food allergy are very small. Even with the family history, the chances that the allergy Pumpkin ends up with is a food one is small. So be aware of the possibility, but don't stress about it. If you've already given your kids peanut butter and they didn't react, chances are it will be fine if you give it again. The advice to hold off is based on very little solid evidence, and as one of the PPs mentioned, it may turn out to have been the absolute opposite of what we really should be doing- there are some studies that seem to indicate that early exposure is protective. There are others that say early exposure increases the risks of allergies. The science just isn't that strong on this. (BTW, I am not a doctor, just a scientist mommy who had a personal reason to do some research- definitely talk to your doctor if you want advice for your family.)

[ACJ]

This post and the ensuing conversation have been with me all day and I couldn't figure out why. But I think what I got to is this: our hard things leave us feeling so lonely. 'Tis the nature of hard things I think. Parents of high needs/special needs/allergic children feel so alone. Parents of 'regular needs' kids who are overwhelmed by the regular hardness of life with kids feel all alone with their hard stuff too. And at the risk of speaking for lolismom inaccurately, the wife of a sick husband and a young child sounds like she is feeling pretty alone too. And let's face it - feeling lonely rarely brings out the best in us.

It reminds me of a time I was complaining to my friend about T.'s first vaccinations. I was panicking about the autism question and being so afraid. And then I caught myself - K.'s son was in the middle of cancer treatment for a Stage IV neuroblastoma and was having to choose treatment solutions that wouldn't kill him and I was whining about immunizations. I apologized and was embarassed and K. so graciously replied, "A., the hardest thing you've ever done as a parent is the hardest thing you've ever done. Today yours is shots and mine is chemo. They're both the hardest thing we've ever done and we're doing our best."

I still cry remembering it.

I guess my point is that we do better to remember how lonely it is to face hard things and there is no winner when we try to make it a contest of who's stuff is harder. I'm surprised more people didn't hear the loneliness of the hard stuff Lolismom is dealing with but then not because their own hard stuff is so... lonely, isn't it?

As we move through parenting together, I hope we find more moments to say to each other, "you're not alone". It's why I spend so much time here to begin with, and I suspect why so many of you are so familiar - you're here everyday to remember you're not alone. Lonely maybe, but not alone.

PS: @ Cloud (I think), the saying that I'll one day trademark is "it's not a problem if you hate the solution more"... That one and "it's either a good time or a good story". :)