Vent!!!! - Mothering Forums
Allergies > Vent!!!!
Missy's Avatar Missy 06:01 PM 02-03-2005
Ds2 has a huge list of known food allergies, but his most severe is dairy. He's ana on contact--just takes one drop anywhere on his skin--and that was the final push we needed to homeschool. So, I spent the last year, my dd's final year in public school, getting to know the area, looking into the resources available, meeting people (not easy for me; I'm largely anti-social). Most people in our area's hs community now know us a little and they are very aware of ds2's allergies and their severity and so, when one of the moms was able to wrangle the use of a community center a couple days a month, we put together a few guidelines (all food kept in one room, no nuts, no peanuts, no dairy...) And, for one day, I felt safe.

Last time we went, a close friend met me at the door and warned me that someone had been eating cheetos, but she went after them and cleaned it up (this same friend baked a dairy-, soy-, egg-, wheat-, nut-free cake for her son's b-day party so my son could eat it--how cool is that?!). Then, someone had cheese goldfish, then someone else put pistachios on the table...we just removed the offending foods. But today, a new mom came and her kids had (AUGH!) pizza lunchables!! With shredded cheese! And yogurt!! My guess is there was probably a sippy of milk hidden somewhere, too, but we didn't stay long enough to find out. I know that the coordinator e-mails all new members to tell them about the restrictions and the severity of the allergies b/c another mom who joined has a baby with allergies and she said the tone of the e-mail was kind of apologetic (Geez, sorry we have to ask you to do this but...) so maybe people aren't taking it seriously. But that cheese can kill my son!

Oh, and then a few weeks ago the proposed activity was to drop eggs off the top of the slide. I finally pointed out that not only was I uncomfortable with flying allergens, it might be dangerous for another, more severely-egg-allergic child to come along after us and unknowingly run through our remaining egg protein.

In the spring, they'll probably want to have a water balloon fight.

I'm frustrated on so many different levels.

The friend I mentioned before has said that she hates seeing so much junk at these gatherings. A lot of these folks profess to AP and FNL lifestyles, and many of them do co-sleep or ebf. It's nothing to see a 3-yr-old nursing. But, cheetos?? And lunchables??? :Puke She's angry, too, that people can't seem to leave their dairy and nuts at home for one day. She'd love to see other people provide food that ds2 can actually eat, but, as much as I appreciate the sentiment, that would be pretty impossible. I just want to keep him safe.

She's said several times that we ought to start our own group, much more FNL-oriented, and set the food guidelines from the beginning. No dairy, no nuts, no peanuts.

Do you think it would work?? Would people actually be willing to give up dairy and nuts for a day if they understood it could kill my child?

I was so freaked out today. I want my little boy to have friends, to play, but it's so hard when other people seem so d*** obtuse!!!



Missy

~*max*~'s Avatar ~*max*~ 06:55 PM 02-03-2005
I am so sorry that is happening to you. My guess is that these people do not truly get how serious the matter is, because how could they possible choose a snack food over your son's safety?! Could you have some form of a meeting w/just the parents to educate them? Maybe pass out some literature to back you up.

FWIW, if I knew about your son's allergies, I would do everything in my power to help keep him safe!
Missy's Avatar Missy 07:20 PM 02-03-2005
Quote:
FWIW, if I knew about your son's allergies, I would do everything in my power to help keep him safe!
Oh, Max, thank you!

I came here to vent because I figured mamas here would understand (I am so grateful we have this forum now!). I try to be very clear when we're organizing something/setting guidelines/introducing ourselves exactly how dangerous his allergies are and then I might remind the group once or twice but I hate bringing it up constantly. I know I sound like a whiny nag, but it's my son's life--and they were the ones who asked how to keep him safe!!

One of the area's newspapers has just bought one of my essays about living with food allergies and they asked me to write an accompanying sidebar to give the bare facts and the "sidebar" exploded because I really wanted to do more than just brush the surface, sooo maybe, after the article has been published, I can sit down with the moms and the article and explain exactly what it means.

One of the reasons I'm so worried about doing something like that is because I've seen/heard the discussions between parents when schools have banned peanuts. It gets really ugly. Hateful. I've been involved with those discussions and the self-absorbed attitudes really turn my stomach. It sickens me that parents would be willing to risk my son's life because their child has an undeniable right to eat peanut butter. If people get that defensive about peanut butter, how can I expect any better with dairy?? FWIW, *most* of the moms are great about not bringing in nut/peanut products; they understand those allergies. But a severe dairy allergy seems beyond their comprehension.

Whoops. Sorry. Vented again.
alegna's Avatar alegna 07:48 PM 02-03-2005
Just wanted to send you hugs and say that I would bend over backwards in that situation to make SURE that I wasn't endangering your son with our food. And I eat a LOT of dairy : Maybe there's a way to plan these events without a meal?

I grew up with a grandmother who was veggie (WAY before it was heard of) and had tons of food sensitivities (chocolate, malt, iodine, rye, etc) and had a friend through camp who was VERY dairy allergic (could be around it, but could eat NONE) so I am used to reading labels and understand that it's not just mom being "overprotective" (which so often is the assumption.)

I think the problem lies on a couple of levels- 1. People haven't really had to deal with what you do every day and they really don't understand. and 2. Allergies were "in" for awhile and parents of kids with SENSITIVITIES claimed they were full blown deadly allergies leading lots of people not to take the label seriously anymore.

Good luck - I'm sure it's very difficult to keep a social life for such an allergic kiddo.

-Angela
Missy's Avatar Missy 02:55 AM 02-04-2005
Thanks, Angela!!

This group meets from 10-2, right through lunch and those are the hours the coordinator set with the county, so we're stuck with food.

I think you're right that people just don't grasp the real impact. It is our life now and that does make me hyper-aware of dangers. We're dealing with a range of allergies and I'm not asking them to avoid his more minor allergens. It's my job as a parent to make sure he doesn't grab, say, the apple slices on the table and to teach him to eat only the food that I provide, but I can't control sticky yogurt drips and crushed cheetos on the floor.

My friend's suggestion that we just start our own group is really starting to appeal to me.

Missy
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