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

[Gina]

@meandmrb

We have had a series of "scratch" allergy tests performed by an allergist for our son. We started just after he was a year old. It was clear that he had food allergies: dark circles under the eyes, severe silent reflux, hives, exema, conjestion, woke up 9+ times a night. What was interesting, is that he was not allergic to what we thought. We thought soy and dairy (turns out he had intollerances to those) and strawberries. He is, in fact, allergic to egg white, egg yolk, sesame, garlic, black pepper, and cantaloupe. Unless your son has obvious symptoms I would not test although I would be careful (as it sounds like you are doing) with introducing new foods.

We have become very active with food allergy issues; creating an emergency plan at daycare, a powerpoint presenation for all the teachers, etc. I am even working on a cookbook of "safe" recipes. Anyone reading this feel free to email me at "gina dot mendolo at gmail dot com" if you have any questions/need support/need egg-free recipes (I have great ones for brownies and for egg-free/soy-free/dairy-free veggie burgers).

[bobeesah]

I'm sure one of the lovely moxie-ites has already said this, but I'm sure the baby just made a noise, so I'm going to hurry.
re: dairy-free: Get thee some VEGAN snacks. They're already dairy-free and really delicious.

[Dawn]

I'm very late to the party today, but I hope everyone can cut Lolismom a little more slack. I don't think any parent would want to put anyone else's child in a life threatening situation, but it really is incumbent upon the parent of the allergic child and the school to help the other parents out a bit. People who don't have allergies or kids with allergies just don't know what the alternatives are to peanut butter or dairy products or whatever and I don't think it's unreasonable of them to be frustrated when they get a blanket prohibition of entire groups of food without any assistance in how one goes about replacing said groups of food. I'm a bit tired and I don't feel like I'm stating this well, so I apologize if anyone is put off by my comment.

For example, at my daughter's preschool, they have a blanket "no nut" policy. They've prohibited home made treats for birthdays and parties and have provided a list of acceptable items, which are all available at the regular grocery store. I don't actually know if there are currently any kids with severe allergies at the school, but I do understand that they've implemented this policy because it is easier to do this than to deal with allergies on a case by case basis. However, it is understandably frustrating for parents who would prefer not to have their kids eating Oreos and Sunkist fruit snacks every time there's a birthday in the class.

I think parents of kids with food allergies sometimes forget that the other parents are not nearly as well educated as they are about the allergies they are dealing with. I'm sure the parents of kids with allergies would say that they absolutely do know other people are ignorant of their issues, but knowing that and helping the other parents to help you are different animals.

I have a friend who has celiac disease and her children are both allergic to milk and eggs. To say that their family has some food restrictions is to put it mildly, but she is great about non confrontationally (is that even a word?) working things out with other parents. She's done informal presentations on the kind of snacks that are commercially available (and yet, not chock a block with HFCS or other food additives) and she discreetly brings treats to parties that her kids can have so that they aren't eating an apple while all the other kids have cake. In my experience at least, the other parents are happy to do what they can when they have an idea of what to do. Unfortunately, telling someone that they need to be nut free or dairy free or whatever doesn't really give them the vaguest idea of what they should do.

It's such a difficult issue, and so fraught with emotion, that I think it is difficult for people to talk about calmly.

[Sharon aka Mommie Mentor]

Thank you ACJ. So eloquent and perfect.

[eccentriclibertarian]

ACJ, that's the single best post I've read in a long time.

[Foster]

Soylent Green. That is the answer to all our food problems.

I can tell you exactly why there are more kids w/ severe food allergies nowadays: It's because back in the day, babies and kids w/ severe allergies died. If a baby was deathly allergic to peanuts, he probably died. Mum filled newborns bottle w/ straight cows milk, he drank it, and died. That is the sad, harsh truth of a time before epi pens & scratch tests.

Several interesting things have been brought up in this discussion. One is the socio-economic factor. I worked in a daycare in a low income area of my city for a couple of years. As far as I know, we had one peanut allergy and one severe egg allergy. Our food service providers did not use peanut or pork products, but those were the only restrictions. One of our snacks was a hard-boiled egg. This was coming from a well-known school lunch provider. They stopped providing Little Debbie snacks b/c of peanut processing, but sent all kinds of dairy and eggs. The boy w/the egg allergy brought his own food. ANYWAY, I think that why we dont see a prevalence of allergies in lower socio-economic circles is b/c low income is generally associated w/ low education. Many people, if Baby Jane is getting eczema and a diaper rash will just assume she has sensitive skin and slather her in cream. Many would never think of a food allergy. If it werent for the internet, I would have never known that dairy sensitivity could manifest as eczema. Before coming to Ask Moxie, how many of us had even known that you could be allergic to fructose? I didnt even think that was possible! Well, most of my school parents did not own computers or use the internet. If Johnny was a little hyper, they told him to knock it off or theyd beat his butt. They never said "Hmm, I wonder if a sensitivity to corn is interfering w/ Johnnys ability to concentrate?" We assume that every parent thinks like we do, but the truth is, John Q Average probably knows diddly squat about food allergies/sensitivities. And, unless their child goes into shock or gets hives, probably doesnt care. With our own baby, dh and I practice elimination communication. She no longer poops in her diaper, but on occasion has had a v small patch of diaper rash. I wondered how on earth a potty baby could get a diaper rash, so I asked on the internet & discovered that it could be an allergy ring. Never heard of that before! And since, if she is allergic to something, that has been the only symptom, Im not going to do anything about it. It has only come on occasion and does not bother her, so Im not letting it bother me. Again, though, were she conventionally diapered & I did not have the internet, Id think nothing of her getting the occasional rash. People with money and education have the time and the means to gather information.

Re: Plumpy Nut: It also contains powdered cows milk! I love to toss that in the face of all the "milk is the devil" people. Milk is saving lives. Some kids probably are deathly allergic to it. However, it is potentially saving millions of lives, so I doubt those supplying it are overly concerned about the allergens.

A few of the babies on my birth board are allergic to dairy, so I learned some new things. Of interest, some Gerber baby foods, such as stage one pears, contain dairy. McDonalds French fries contain dairy. It is disputed whether or not the burger meat contains dairy to up the protein content. So, here is what I am wondering: Many of you w/ children who have severe food allergies, your kids are v young. What happens when they get to elementary school? I have seen that many are making adjustments, which is reasonable. What about jr high? High school? College? Work? For children who cannot touch dairy, it is mandated by the government that public school lunch comes w/ a milk, so milk protein is all over the cafeteria. For a child who is severely allergic to things w/ fragrance like hairspray, do you tell a group of 15-yr-old boys and girls not to use hairspray, cologne, or scented deodorant and expect them to follow that? Because theyre not going to. In a high school with 3,000 students, what is going to happen then? I am by no means asking this to be snarky, I am serious. Controlling the food within a daycare or elementary school is absolutely nothing compared to the rest of the world. It seems like the severely allergic wave (or whatever you want to call it) has not aged out of elementary school yet, so what is the next step?

In any case, avoiding allergens in food for one school lunch per day, as a pp posted in a list, is not that hard. I think we get all up in arms b/c so much food that is processed for our convenience is what contains the allergens. A soynut butter and jelly sandwich, a cold fruit and cold veg, and water, juice, or kool-aid for lunch is not really a big deal for a kid to eat every day. Tomato sandwiches. Cold pancakes, fried chicken, or spaghetti. Hot soup & a hot dog in a thermos. Moms get so up in arms about there not being fridges or microwaves ~ Hello! They werent there when we were going to school, either! That is why you buy an insulated lunch box, duh!

[cat19]

@Julie, thank you. Thank you. Thank you.

***

@P: I get it, I truly do, why some parents whose kids don't have allergies are overwhelmed by being asked to change their kids' school or daycare food choices. I get it particularly because I've had to do it, more than once, as my child developed more and more food reactions. I was very motivated to do it because it was my child's health. If you had seen, when he was four months old, the eczema that looked like chemical burns all over his face and the infected impetigo all over his head from scratching the eczema, you too might have been motivated. When we started our journey of specialist in response to that reaction, one that went from one small red spot to his entire face in two days, my husband and I were so scared that he would be scarred for life all over his face that we did not dare ask our pediatrician or the dermatologist about scarring. We were too afraid to hear the answer.

But once we pulled his allergic foods from my diet and put him temporarily on steroids, he began to heal, and healed well and without scarring.

I do get that it's confusing to people that virtually all kids used to eat peanuts and not get allergies. I do get that it's tempting to suggest that it's all upper- or upper-middle-class kids--so maybe , you think, it's just kids with parents with too much time and money on their hands who get diagnosed. But as a parent of a kid with allergies and a friend to many families with kids with far more life-threatening allergies than my kid's, I hear that point as somehow questioning the validity of these kids' allergies. Perhaps that's not how it is intended. But it resonates that way for me.

I'm sure that there are parents who say "my kid can't eat x, or is allergic to y," and they're exaggerating or have no idea what that should mean. And I hate that some of those people make it harder for me to get people to take my son's food restrictions seriously.

The difficulty is that you don't know up front from the statement "my kid is allergic" which kid really could die or end up hospitalized or, as is most common with my son with most of his "problem" foods, "just" end up crying in pain for four or five hours in the middle of the night unable to sleep.

So until you know, please, try to assume that the person does know what they're talking about, and respect that food restriction. If it is problematic for you to provide food for your child under those restrictions, try and approach that problem communally, and ask that other parents and teachers work with you to find a solution.

But please consider that when you approach that problem of feeding your child by saying another child is just too inconvenient to be in public school, or that another child should just risk whatever reaction they might have and use an epi, it does not help to build a sense that you are willing to work with us to find solutions. It does not help us to feel any sense of trust that you care about our kids' safety.

I can see how hearing that your kids' lunch might hurt another child is so stressful that it's tempting to turn that stress into anger (it's too much to ask!), into denial (how could that hurt anyone? milk is wholesome!), into resentment at another thing stuck on your plate to worry about when almost every parent has plenty to deal with in helping their own kids.

But we're not going to come up with any better solutions without being able to talk to each other and work together.

A previous poster talked about how in her community the local bakery made allergy-safe treats and the whole community pulled together to make it both manageable and safe for all kids. That sounds blissful and idyllic.

***

On the miracle of epis and their limitations: I debated tracking down the list of food allergy fatalities and severe reactions from my favorite allergy support website to post a few links: the 7-year old child who died from hot chocolate mix her Brownie troop made; the 31-year old lawyer who died from touching food fried in peanut oil before he had a chance to give himself his epi; the 9-year old who accidentally drank his sister's cow milk thinking it was soy milk and despite getting an epi he died. Or the 4-year old in Australia who died when the daycare provider apparently stuck the epi pen into her own finger by mistake.

Or the dr who took what he thought was a safe nut-free cookie. But it had been touched with a spatula that had touched peanut butter cookies, and it took five doses of epinephrine before the reaction resolved.

Every time my caller ID says daycare is calling me, I worry that it is a call to say my child has had a reaction. I never want to get that call. I cannot confidently say that it's guaranteed that it will work, that it will be given, that it will be given quickly. No matter how much training you give people, often they hesitate; they worry about hurting your kid; they tell themselves it's not a reaction. When my son was one and had anaphylaxis and his face swelled up so much he was unrecognizable, I hesitated until the nurse on the pediatrician's phone line told me to give the epi and call 911. In a crisis it is so tempting to go into denial, telling yourself that this cannot be this child's life at risk, that this must not be that serious.

But it can be, and it is that fear that you hear in many of our voices, in our anger and worry that other parents will not help us to keep our kids alive and healthy.

Fear and anger and resentment from parents with food allergic kids; fear and anger and resentment from parents without food allergic kids. None of that is conducive to open conversation.

I do respect the right of all of you to say these types of precautions are burdensome.

And I want to apologize if my posts today have not been as civil and respectful as I would usually aim for; I do hope that those of you who feel that this respect for food-allergic kids' safety is out of control and they should be homeschooled can try to stretch to understand that many parents' requests for accommodations truly come from a deep desire to keep our kids healthy--not from a disregard for the inconvenience factor. There may be obnoxious parents out there, but some of us truly work hard to be moderate and reasonable and to ask as little as possible.

Sadly, sometimes the minimum necessary to keep a food-allergic kid safe is burdensome and inconvenient.

I hope someday we find better alternatives.

[Foster]

I often wonder how any of us manage to stay alive at all.

[paola]

And for the record, the epipen is not 100% reliable. What if you get a faulty batch, what if it has been exposed to light or heat and has reduced effectiveness? I ask myself these questions everytime I come in contact with new food, food that I have been quaranteed does not contain any nuts what so ever. I have been fortunate so far in that I have only had to use my epipen once in the last 10 years, but they were the questions going thru my head at the time.

[amy]

I keep starting to comment and then stopping, so if anyone who would benefit from my experience here actually reads this far, I should be shocked.

I recognized my daughter's food aversions and tactile hypersensitivity ("recognized", as in noticed and took seriously) before anyone else did, including the pediatrician. Now, I love my ped, but I knew in my heart that my daughter's issues with touching wet things, particularly foods, were going to be a problem. Eventually, he agreed.

The problem then was where to go for help. The one doctor he wanted us to see wouldn't see us because she specializes in how these things play into toileting issues, and we had not begun toilet training. So, where to go? The ped just told me to call the specialist, as there was no one else he could think of.

What worked for me: talking to people even when I didn't feel like explaining anymore. There is no question that it is frustrating to talk to people who at the moment have no room in their minds or hearts for kids who are exceptions to the rule. It is a giant exercise in knowing when to stop, nod, and make a note to oneself to dismiss everything they are saying.

HOWEVER, if you are looking for help and you don't talk to other parents, you might miss the diamond in the rough. In my case, it was talking to my mom's neighbor at her garage sale. The neighbor's boys look, from a distance, completely "normal", but it turned out that the neighbor had had to pursue speech therapy for both boys. And she was happy to share what she knew with me. We didn't find ourselves seeking the same therapies, but she knew what channels might be most helpful to me. She turned out to be right, and my daughter has been getting the help she needs though I never would have found it on my own or through my ped.

I guess what I'm saying is, if you're looking up at that cliff and feeling alone, you're not - but the others who will help you are not always easily found. Keep looking. It's worth it.

[cat19]

@amy, I'm still reading. And I agree: finding others facing the same cliff (or a similar one) isn't always easy, but it can make such an enormous difference.

[hedra]

@amy, the keeping talking thing is huge. I can't count the number of people who have said, either 'wait, that sounds like MY kid!' (and who have taken the trouble to track me down later and say 'it was my kid! thanks!') or 'oh, yeah, did you see Dr. X? I'd recommend Dr. Y instead. What therapies are you using?' or even just 'I hear ya, we have a totally different set of issues, but I hear ya.'

Figuring out when the energy/interest is there, or is not there, isn't too hard. Strangely, I've yet to encounter a stranger who isn't at least engaged and curious, and yet will get glazed looks and clear resistance to roll eyes from some family members. Granted, they've heard it more than strangers, too. It is probably a benefit to have something going on that most people haven't even heard of (not so fun when it is the doctors who haven't heard of it, mind) - no preconception. No 'oh, you're one of THOSE parents' - or they'll try to box it in, classify it: "like an allergy" or "like lactose intolerance" or "like celiac" - something they know, have made assumptions about already, based opinions on from media, friends, gossip, family. I think the entrenched opinion thing is much harder to face, because people become fondly attached to their opinions, and refuse to actually listen to anything that disagrees. It is hard to find intellectual honesty where opinion has already formed, especially negative opinion (though I'm equally uncomfortable with unfounded awe - I do this stuff because I must, just like other parents do it because they must, just like you'd do it if you had to, also. Because nobody else will, if I don't. Period. No awe, I am just you in an alternate universe.).

So yes, keep talking.

[Lerren]

Okay.

My brother and I have had various "special needs" growing up, both diagnosed and undiagnosed, but to be clear from the very start, allergies were not among them.

At the age of 6, my brother had open heart surgery, and a subsequent stroke.

And he was back, in a very regular first grade class, less than 6 weeks later. Yes, there was rampant communication with teachers. Yes, they made sure that the PE teachers knew. But the very best thing my parents did for him was *not* make him out to be a special case. He got letters and a teddy bear while he was actually in the hospital. With the stroke, we didn't know what was affected, and what wasn't - but that didn't mean he didn't have to at least *try* everything (turns out that the only real effect was that he can't write in cursive, and his handwriting never progressed. An odd quirk to explain, but understandable).

I think the school system up here (I'm in Canada), really got it right. The kids with lots of extra needs went to a separate school. Whether it's an extreme set of allergies, Cerebral Palsy, FAS, they had an entirely separate school which was far more equipped to handle such things, at the kids' own pace. At this school, repetitions of grades weren't abnormal, neither were being strange, and because it was a fairly small community, the kids weren't ever treated as different by anyone in the neighborhood, they just went to the other school - no big deal.

Moreover, if you're at the other end of the spectrum, which my brother and I are, you get sent to yet another school, better equipped to handle your "specialty" - the ability to learn faster and in a broader sense than the others. Really, the kids who went to enrichment were teased way, way, WAY more, because we were actually bussed out of town, had later school hours, and more work to do in general.

I do not think streaming is a bad thing. I don't think it's unreasonable to say "This kid needs special treatment" and then go about bloody doing it. And I'm grateful that the area I lived in had these capabilities. I think there's far too high an emphasis placed on conformity and making sure your child gets the same as everyone else, even while making sure that everything else is "different." - there are countries which are setting up separate classrooms for kids with severe allergies, and I think this is a good thing. The advent of standardized testing actually enables this - you aren't in a situation, which you might have had before, where your child by virtue of his/her specialness isn't learning at all the same thing or is being treated as a second class citizen.

Do I believe that all parents of children with allergies are whiners? No. Some allergies, reactions, diseases, and conditions are indeed a matter of life and death. Do I believe that that all parents of children with allergies should be given extra special treatment? No. It marginalizes the kids who are "normal" and puts them in a situation where they will (and do) act out in order to get attention, thus leading them to be diagnosed with something "special."

There is moderation in all things, and thank you again, dear leader, for making us all truly think.

[michelle]

@P and others-

I think food allergies are like some other conditions that were simply under-diagnosed when we were kids. I never heard about allergies growing up either. Then again, I have a very vivid memory of my best friend Christine throwing up all over the place and getting some HORRIBLE red things on her skin (hives?) after sleeping over and having some of my Mom's blueberry pancakes.

So...this isn't just some made-up crap, and it isn't just rich kids, and the problem existed 30 years ago, too. My friend Christine, for example, is one of 5 kids in a family with one working parent.

Basically, I am never impressed with the "this wasn't a concern when I was a kid...so it doesn't exist now" argument. People say the same thing about drinking and smoking when pregnant, like "my Mom smoked a pack a day when she was pregnant and, gee, I'm fine!" It is just ignorant, and ignores the basic idea of scientific progress.

[ramy]

I had to stop reading b/c I hear the baby waking (and yelling). Just wanted to point out that in my state, parents can *only* bring class treats if they are from a store. So you can't make cookies and bring them in for your child's birthday, for example.

If another parent is bringing in a bday treat, I bring in something for my daughter. Hopefully she'll grow out of this in the next few years--the allergist thinks she might. fingers crossed the baby doesn't have it too.

BTW, I've had luck bringing in the ingredients for dairy free/egg free cake and then the kids make it themselves.

[bookluvingbabe]

I find this all so.... interesting. My darling 18 month old son was just excluded from the preschool we enrolled him in due to his egg allergy. This was after our allergist assured us he would be fine in an environment where eggs were present, that if he got eggs on his hands he might get hives but he would be fine so baking wasn't an issue, etc... Nope, they didn't want to deal with it. And since it was private religious school, the Americans with Disablities Act doesn't apply. So he is bored out of his mind as the only child in his daycare situation. We are looking for alternatives but we are unlikely to find anything until next fall. And that sucks for him. On the bright side, I am really glad we found out how truly awful the school adminstration was before he started there. Sigh...

[xiw]

I'm 35, from a poor, undereducated, rural background, and had diagnosed food allergies as a child (roughly 4yo). I was diagnosed via back patch test, and remember it quite clearly - it was a slice of hell.

I also had a host of ENT problems and ended up with adenoids out and tubes in not long after the allergy testing.

I took allergy shots once a week as a kid, from the age of 4 or so until...geez, I don't even know how long I took them, but it was a long damned time. Needles don't faze me now, though!

So how did a shoeless bumpkin end up with an allergy diagnosis in 1977? I had a mother who loved me and did not rest until she figured out what was making me so effing sick all the time. She had been a sickly kid, too, and wanted to spare me the same childhood she had.

So I have a lot of empathy for the parents of kids who are 'out there' in one way or another. I don't mind making special accommodations whenever I'm alerted to a problem; it's just not that big of a deal to me to be a decent human being for the benefit of a child. There *are* kids with epi-pens in our preschool (I only know this because I happened to glance at the list in the lunchroom one afternoon), but we've never been asked to leave anything out of our son's lunch.

[pennifer]

Coming really late to the party to mention one little thing about allergy testing.

Around age 30, I had two borderline anaphylactic reactions to almonds and one to pecans. I had allergy testing (blood and scratch) that "revealed" I was allergic to ALL nuts, to celery, and to salmon. I stopped all nuts for several years, but then began to reintroduce (accidentally and eventually on purpose) all nuts except for almonds and pecans. I can even eat almonds (again accidentally only) without having a reaction.

I've never had a reaction to celery, the other nuts, or salmon - I can only conclude that the testing is far from 100% accurate, but it can be helpful in isolating possible problems.

So, a long-winded way of saying that allergy testing is NOT the end-all-be-all answer to the situation.

[strugi]

Oh my...Thank you all, I feel as if I have learned a lot reading this post and the comments. I have to admit (and I am embarrassed to say this) when I began with the post I thought that the restrictions were kind of painful. Then, as I continued to read a few things struck me 1. Most of the food suggestions were wonderful, I can send my son to daycare with celery or raisins for snacks (I would rather he not eat oreos though). 2. It must be incredibly difficult and isolating to be the child with the special need. 3. It must be equally difficult to be the parent of the child with the special needs. I know my heart skips a beat when my phone rings and my daycare providers number shows up on the caller ID...I can only imagine what it is like for parents of children with life threatening allergies.

Really, thank you, if and when I encounter this in real life I will be better prepared to approach it with some level of grace. Maybe I can even help make things easier for the child/parent. Who knows what special needs each of us will have in the future.

[Erin]

Lemon, Ask your doctor to write you a prescription for Benadryl, if there is one of some kind. I was a preschool teacher and we couldn't administer non-prescription medicenes of any kind but we could administer prescription meds. I hope that helps. The school would have to administer a prescription.

[Mom of one]

@ Karma, "Oh hell no!! There will be absolute hell to pay. "

What do you think happens when parents make a mistake? We *all* make mistakes, and even parents who read labels rigorously make mistakes, or assume a product is fine because it was fine before, but now suddenly the manufacturer has changed one ingredient. I'm so glad to see you're more interested in helping the community make a difference instead of just rushing to place (hypothetical) blame.

@Tricia - "The Americans with Disabilities Act really covers people...you really need to do some reading up to see your entitlements."

This bothers me one some level - isn't this exactly what lolismum is upset about? The sense of entitlement? There are DEFINITELY precautions that should be taken, and the whole community needs to work together. We're in a new place with all these allergies - what *are* we as parents of special needs children entitled to?

[xiw]

Came back to add that after howmanyever years of allergy shots, adenoidectomy, and just plain growing up, I remained allergic only to poison ivy and its relations (including mango). I'm not sure which of those three things was more responsible than the others, if any one thing was.

strugi is very right - none of us knows what the future holds, either for us or our children.

[Erika]

This is so timely for me. I'm late to the comments because life has been overwhelming this week (and it's only Tuesday!), but wow, the timing couldn't be better.

I took my daughter (22 months) on a tour of a Mothers' Day Out/Preschool program on Monday. While she was exploring the playroom and interacting with the other kids and the teachers, I was quizzing the program director about anything and everything I could possibly think of.

At this particular school (MDO until 3's, then 3's through Kindergarten), you pack your own lunch and snacks. (It is quite common in our town to have all meals prepared in-house so as to avoid all outside foods.)

"What are the food restrictions?" I asked. "Peanut butter ...?"

"None," she replied. "We don't have any allergies at this point" (!! with a hundred kids in the school??) "and if they crop up, we'll deal with it then."

I will admit that I was EXTREMELY relieved, because we love peanut butter. Also, I hate shopping for food and I hate cooking and putting meals together, so the thought of having to do extra work made me grumpy.

Now after reading all of the comments here, I just kinda feel like a schmuck.

Lots of good information in this conversation - I'm really impressed with the info and saddened by some of the experiences that you guys have shared. All of the autism and ADD and allergies and whatnot that we just didn't seem to have in the 70's but now all seem to be happening in crazy, scary proportions is just mind-boggling to me. Whether or not there are true increases in the rates versus perceived differences, the whole thing remains really creepy to me.

Bottom line for me: I want my village.

[Nikki]

@meandmrb
Just FYI, many many people in hawaii are allergic to mangoes, some to the point where they cannot even walk past a tree without breaking out in hives. Apparently mangoes are from the poison oak /sumac family and the sap (which can get aerated and got on your skin just from walking near) causes big hives to people who are sensitive to it.

[hedra]

@Mom of One, the ADA can be used effectively WITHOUT messing withe everyone else. Accessibility and access don't have to be awful experiences. The people who jump to ADA automatically might just happen to be the types most likely to demand without problem-solving, but if 'regular' folks call on it because they qualify, that whiff of entitlement might go away a bit. It's no worse than demanding that girls be allowed to play sports and do metal shop, is it? Oh, the screams of horror about that one when I was a kid. My sister, in SHOP? I mean, what will they ask for next? The boys shouldn't be asked to accommodate a girl in there - she'll be needing their help, distracting them from their work, taking up too much of the teacher's time because, well, she's a girl. Duh.

It really is no different. Yes, my mom had a sense of entitlement - she felt her daughters had both a legal and moral right to take whatever classes they damn well felt like. So she pushed, made a stink, made the school change their rules, threatened to sue if they didn't (because they dragged their feet). I still remember my mom's suppressed glee when at a back-to-school program, my sister's work in metal shop was displayed as one of the top efforts. Ha. I took wood shop, when I went, and by then a third of the students were girls, and the best student in the class was a girl (yes, she took up most of the teacher's time, but she was turning end posts for the bed she was making... she made herself an entire bedroom set in a semester. I made a desk set and a bird house and took my C and ran. Not that I did better in sewing or cooking... then, anyway).

It really isn't different. The people who leap first are the loudest, most likely. But the ADA is there for a reason, just as Title Nine is. The more people who use it effectively, the less it seems weird, and the more useful accommodations start being the norm (instead of the unusual, and often cobbled-together and less-pleasant ones). Just ask any architect about the early implementations of ramps and access... ug-lee. But now that everyone is using it, it is integrated into design more often. Ramps may become features rather than add-ons. The features become useful for others that didn't expect it - like moms with strollers, you know when you find a good ramp, yes? And doors wide enough to get through with a diaper bag and a stroller? The same will eventually be true with these other issues - we'll wear them in, they'll start being a) normal, and b) much better thought-out, and c) repeatable. Less a burden, and in some cases, more useful.

Our preschool has made a bonus out of the nut-free thing. They pre-design their snack schedule, and cycle the parents who buy snack for the whole class. They send out a list - including brands where it matters - of healthy snacks that are safe for the ones who have safety issues with food. It's mainly carrots and hummus, bananas, celery, cereal, corn chips and salsa, and so forth. And no, my kids can't eat most of it, but it covers the emergency level stuff completely. I send in our backup snacks for our kids, and we're done. No issues for the other parents, and bonus, kids are trying out things they might not try at home, because everyone in class is eating it. Lunches are still on our dime, but the snacks lists help guide some of the options there, too.

Anyway, that's probably my last thought on the subject. It isn't so much entitlement if it is a matter of equal access and value, is it? (Though I also don't mind the idea of having cluster schools that have better programs for people with the more severe categories of issues, at least as a mainstreaming access point - having gone to a school that was a transitional school for the hearing impaired, working to integrate those who wished to and could into standard schools. It was a great experience, and I was glad to be part of it. Good education, there, too.)

[m]

I may be the only person still reading, and I haven't commented on this thread yet although I've read every post.

I'm wondering about Halloween and remembered my sister last year telling me about a boy who was so disappointed with what he got from her because it was another thing he wasn't able to eat. I know many parents have navigated Halloween very well, but I was wondering if some of you with kids who have the more common allergies (nuts/milk) could suggest some treats that would be okay for the kids?

[AmyinTexas]

I'm late to this as Ike still has our internet... but this is so timely.

My son has a visual integration/processing disability which affects his performance from math worksheets to handwriting. This is small potatoes compared to what some people have, but his continued inability to do 100 math facts in 5 minutes (as an example) when the rest of the class finishes quickly creates anxiety that spills over into other areas of his school day. The school is notoriously reluctant to accommodate (and from my research it appears that as a parochial school without federal funding, they are not obligated to accommodate). Ugh. So, we are in the throes of trying to decide what to do. He's in therapy for the disability, I've listed ways his teacher can help him, I try to give him coping strategies... but I feel so sorry that the process of school is so hard for him when the content is clearly so easy.

[hedra]

@m, we buy everything off them at premium rates. My kids all value cash money, LOL!

We also trade in for safe treats, with a general (not absolute) maximum of thirty treats (because so far we've found that thirty works pretty well, unless there's some kind of bonanza on something they can eat). Other stuff is a nickel, dime, or quarter an item. Including dum-dums and penny candy. Bigger the item, bigger the payout.

Miss M, whose Halloween list is the most limited (smarties and sweet tarts, almost exclusively) has loaded up her piggy bank each year with a good haul of cash.

She also likes pencils, by the way. But some kids find those booooring.

[cat19]

@m--if you want to do candy, some varieties of DumDum lollipops (the ones without stuff in the center, no gum or whatever) are free of the top-8-allergens. Check the label, as it should mention that it's free of tons of stuff or say made in a dedicated facility.

[m]

Thanks for the suggestions cat19 and hedra. I'll definitely keep both the lollis and pencils in mind. I know that last Halloween I remember seeing some mini-chocolate bars that said 'peanut free' but I don't know if parents of nut-alergic kids would trust that enough. I don't know if I would.

[Stephanie]

Sorry to be chiming in so late...

The first year my daughter was able to trick or treat, I brought a few little treats to several of the neighbors we knew best and asked if they would mind dropping them in my daughter's basket so that there would for sure be a few treats that she could have without problems. That way my daughter didn't feel left out but my neighbors weren't inconvenienced. It actually worked out that in the years since, each of those neighbors has very sweetly gone out of their way to have something "Chloe safe" on Halloween, which means a lot to me.

I always try to have allergy free treats at our house too - I'm sure we're not the only family dealing with allergies - but I try to have things on hand that kids will find appealing no matter what.

For candy, we usually have Smarties or dum-dums. We also usually have non candy items that I can pick up inexpensively at the party store - stickers, pencils, erasers, teeny bottles of bubbles, party pack sized tubs of playdough, super balls - that sort of thing. I usually have two baskets - one for toddlers/preschoolers and one for older kids, so that the second and third graders don't feel like they are getting "baby stuff."

For all of the people who don't think food allergies are serious, my five year old daughter has been hospitalized twice after exposure to dairy - once for five days. And the daughter of a friend of mine went into shock at 6 months after trying cows milk based formula for the first time and actually had to be resuscitated in the ambulance en route to the hospital. I don't think I can even begin to explain the terror I felt when I first sent my daughter to preschool. I spent the first several months just waiting for the phone to ring with the news that she was being rushed to the hospital. Fortunately, that never happened, but I wouldn't wish the fear of it happening on anyone.

I do think something that makes this whole situation more difficult for everyone is the fact that some people use the term "allergy" very loosely, which has the unfortunate effect of making people not take allergies very seriously. Because of other people who don't let their children eat various things because it might give them a tummy ache, people don't realize that if my daughter eats dairy or soy, she might STOP BREATHING. So, while I do think there has definitely been a rise in the number of kids with food allergies, I also think there has been a rise in the number of people who say their kids have food allergies, when perhaps, that's not truly the best or most accurate description.

I do not think that food allergies discriminate based on income levels. The WIC program actually provides elemental formula for babies with protein allergy whose parents would not otherwise be able to afford it. But most babies outgrow milk and soy allergies by age one or two and of the ones who don't, most outgrow it by the time they start school. The kids who are still allergic in kindergarten and elementary school are just a small number of the ones who had issues as babies. So maybe that makes the allergy population seem skewed - maybe there's a higher incidence of OLDER allergic kids? I don't know.

At my daughter's school,everyone brings their own lunch and no one is allowed to share lunches. My daughter and the one other child in her class with an allergy have their own lunch trays with their names on them, so there is always a buffer between them and the lunch table at lunch time. Snack duty is shared among the families at school. Each family provides snack for one week, twice a year. Snack is supposed to be fruit or veggies with some sort of carbohydrate and some sort of protein (usually hummus, cheese or nut butter since there are currently no nut allergic kids at the school.) The snack family also provides a gallon of milk. My daughter has a container of rice milk at school with her name on it so she doesn't feel left out when the other kids have milk and she brings her own cup. She also has a box of "safe" crackers in the school kitchen so on the days that snack isn't safe for her to eat, she eats her own crackers, plus whatever fruit or veggie is offered that day. This year (her kindergarten year) will be her third year at this school and this has worked out really well for us and it takes the pressure off of the other families.

I also keep a stash of "safe" chocolate cupcakes in our freezer and send her to school with one in a baggie whenever there's a party so she can have a treat too, and doesn't have to watch all of the other kids eat cake while she eats an apple (we do this for birthday parties too.)

We pack a snack for my daughter whenever we go anywhere - that way, no one ever has to feel inconvenienced by her needs. I always try to make sure that her/our problem doesn't become everyone's problem.

As for "special" snacks being expensive and inconvenient, they don't have to be. Most little kids love raisins or grapes, for example - you can get those at any store, they aren't expensive and they aren't a typical allergen.

Hope this helps!

[orcheus]

I am a public school teacher as well as mom to a kindergartener with a peanut and penicillin allergy. I carry Benadryl and an Epi at all times, and my son wears a Med ID bracelet.

I just had to add a couple of points:
1. An epi-pen may not necessarily prevent death in the case of a severe reaction. It just temporarily stabilizes the blood pressure. Even with proper and timely administration, an individual can still die, despite receiving professional medical care.

2. If you have never seen the needle from an Epi, they are pointed metal tubes that are thick and strong enough to puncture muscle tissue. An overdose can cause "brain hemorrhage" as a side effect. Not exactly preventative medicine.

I wish my son's condition wasn't called an "allergy." The term is so misleading. People seem to think of itchy watery eyes and runny noses. It would be more appropriate to call it a "deathergy."

If I could make it go away, I would!

[Bobbi]

I read all the comments on this thread, and was rather disheartened...then I came upon this local article about a school near me. It made me proud...

http://www.msnbc.msn.com/id/27010658/

[anonymous]

I think there is a point where the families of kids with allergies have to be the ones to take the child home for lunch or have them eat separately.

I know children with peanut allergies.
I know children with dairy allergies.
I know children with soy allergies
I know a child whose allergic to all these things, as well as a lot of fruits (kiwi, strawberry, orange, etc).
I know gluten intolerent children.
And I won't even go into the developmental difficulties some of the kids face, often compounded by junk food (or so many people think)

They all live in the same area. Say they end up in the same school. What the heck are all the other children supposed to do? Not eat? Because that list of 'no nos' wipes out a heck of a lot of food options for little people, and those that are left can be quite expensive and difficult to track down, something most people don't have time or money for, especially when it's not even for their own family.

'Normal' (foodwise) young kids need protein and fats in their diets; fruits and veg, while to be encouraged generally, in large amounts only serve to fill a child up and prevent them from getting the fats and protein intake they need to keep growing and for brain development. Trying to accommodate absolutely every child's food allergies, when the lists only seem to be growing, has to be considered unreasonable at a certain point. It just does.

And I believe the reason why you don't see these food allergens in poor or 'minority schools' as someone called it, is because the kids don't grow up in sterile, pristine environments where there hands and all the surfaces and toys they touch are constantly being scrubbed with antibacterials. I suspect we've created a lot of these problems for ourselves by being 'too clean' and not exposing our kids to enough germs while they're babies.

I'm sympathetic, but at a certain point, the other side has to acknowledge the realities of accommodating every little thing, because these things seem to be covering lots and lots of things these days.

[Sahara]

I'm appalled at some of the comments I've read hear. I thought we'd left school segregation behind long ago. Disgusting.

Do you think these children ASK for these conditions? Do you think their parents do? Many parents of kids will allergies live in fear every day their child is in school for fear that an accident of some sort will happen and they'll get a call that their child had to be rushed to a hospital.

Education is a RIGHT for ALL children - no matter what their medical condition. Perhaps if you have a serious issue with the school program, you should keep YOUR child home - many parents can't afford to stay home and homeschool a child because YOU have a problem with a special needs kid in your kid's classroom.

I think we're all forgetting something here - allergies and special needs were present in kids when we were in school and we all adapted just fine. Sure, they might be more prevelent today, but why should any kid be denied the same great school experience we had? Don't we want for our children what we had or better?

[gaz]

I know I am commenting late. But thank you for this post. It is hard packing snack and lunch for a child on a restrictive diet. but the consequences are a lot harder. And somedays it is scary to wonder what is happening at school bc it is not like we can control everything even though we do try. And one drop of gluten or casein will set my little boy or many kids like him with ASD back, way back. To give a few examples - it is not just the food they ingest but many of our kids can't tolerate wheat in soaps (who ever knew there was wheat in soap), nor can they tolerate the wheat used in many everyday stickers. In fact it can send some kids into seizures and not just "typical" autistic behavior. so thank you for asking people to be a little tolerant our our little ones' diets.
xo

[knockoff handbags]

Very nice and helpful information has been given in this article. I must say that this is a very good post.

[Kongara]

So here is a goofy question: How would one go about geittng something like this started in our city? I don't believe there is anything around the MPLS/St. Paul area. I believe in this cause so very much and always appreciate the posts from Kelly and all the readers. This is our first time of ever having to worry about food allergies. My son is only 19 months old, and it is hard having to follow him around every where in public to make sure no one shoves a cookie at him (egg and peanut allergies). And I know it is only going to get worse. I feel like pinning a sign on him that reads Don't feed me . Blessings to you all!

[salon sukien ślubnych łódź]

Reading this write-up - the present of one's time