This went on for months, because although it upset him, he didn't want to complain about it and didn't mention it to me. This brings up a GREAT series of points.
1. HG children are extremely bright and often highly perceptive about others around them, yes?
2. Following from that, at a VERY young age, kids with life-threatening food allergies learn that adults are not all trustworthy-- they also learn that even adults that SHOULD care about them and love them-- sometimes put food before their welfare, and almost certainly before their feelings. My DD knew this by the time she could walk, I think-- truly.
3. Such children learn to be PLEASERS-- in a
big way. Because
their LIVES depend upon it. They DO NOT make waves, these kids. They
know (and believe me, even if they didn't, people have no trouble telling them) that they are wherever merely by being granted a FAVOR. Inclusion or safety is
never a given-- with anyone. It's always because someone or a group of people has opted to do you the FAVOR of including you, however cursorily.
4. Perfectionism is also a HUGE problem with these kids.
HUGE. Think about it-- they are kids that know that a single mistake could be fatal. The stakes don't get much higher than that. They also learn that if they fail to please OTHERS, that largesse can be withdrawn in a heartbeat.
With that set of constraints, most parents are backed into a corner of either homeschooling or keeping their child reasonably
safe at school. Appropriate academics is quite a ways down the list, quite frankly. The BEST that most of us can hope for is that a school won't irreparably damage our kids' ability to function in a world that will be forever extremely hostile toward them.
This is why we chose virtual school with all of its (myriad) problems-- it was
better than the other alternatives. And let me be blunt-- it's BAD. Talk about least-worst. But at least we don't hand over duty of care to others routinely, and the accreditation means something in the long run.
As a parent, I know that my kid doesn't have the freedom that others do. I know that if she wants to "try" something, we have to do a lot of ground work first-- and that she had better be a DELIGHT to have around, because she is a complete pain to deal with and anxiety-provoking for anyone with half a brain, quite frankly. My radar jangles when I deal with someone who IS NOT freaked out, quite bluntly. Because they SHOULD be.
Try explaining to others that there is "safe enough for {DD} to attend" versus "safe enough for {DD} to eat at" versus "safe enough for {DD} to eat the food provided." Those are not the same things. We ask ONLY for the first of those-- ever, and we apologize if others
thought that making an event "allergen-free" meant that DD was going to eat food they brought. Not happening-- and really, we're
doing those people a huge favor-- I say that as someone who has fed her something that made her gravely ill in minutes. It's hard to overstate that horror.
My daughter also had to learn (the hard way) that our number one motto is "be ready, willing, and able to walk away from danger in an instant if the situation goes south." She is not as willing to do that as I would like, and I think it amounts to lack of life experience.
It makes me bristle
a LOT to hear my daughter termed "immature" either socially or emotionally. She is neither. She deals with this with a level of grace and skill which is MIND-boggling. Imagine performing at an elite level while simultaneously watching a judge and where s/he puts his hands-- continuously. She monitors where 'touch surfaces' are in an environment, and avoids them when possible, and when not, she tends to wear long sleeves that she can cover her hands with (to open doors, touch railings, etc)-- failing THAT, she is VERY aware of when her hands might be contaminated from her environment and she is flat out better about not
touching her face than any adult I've EVER known. She does all of that. With a smile. When your eleven year old can apologetically ask an adult judge to "please wash your hands before you handle my score sheet, if it's not too much trouble?" that is NOT an example of "immaturity." It's not paranoia, either-- the risk is real, whether others believe it or not.
Frankly, she puts most middle-aged adults to SHAME. She is well into Dabrowskian level IV, and regards others with a sense of sadness that they don't "see" the world around them...
But this leads me to another really important point about people like my DD. They can't win with others, and it isolates them horribly.
They have two choices--
a. accept exclusion gracefully, placidly, and serenely-- with perfect poise and manners, in which case others will use it against you as a reason TO exclude you (OH, it's okay to hold the meeting at the {allergen-laced} restaurant {that DD can't even go into}-- she said she doesn't mind!
or--
b. Show that it gets your goat-- be sulky, or sad when people are selfish or mean or petty about it. OH, well, then in that case, it's an example of
emotional immaturity.
That dichotomy is surreal. My daughter errs on point a, by the way. She's learned that she HAS to be seen as "mature" if she's to be accepted by academic peers-- no matter the cost.
Getting an idea why she is so crushingly LONELY? Even her "friends" have no idea when things bother her. She's too grateful that they include her
at all.Here is the last note about this. I have a feeling that many parents here can identify with this. By the time kids like my DD are adolescents, one of two things is true--
either they remember a very serious (and frightening) reaction, or-- if parents have been very lucky, and VERY diligent-- they do not. One or the other. What all of them want more than anything is to
forget about it and be LIKE EVERYONE ELSE. Just for a while. Just once.
On second thought, maybe not remembering reactions
isn't so lucky. {sigh} Because teens will take risks that are unthinkable in the name of fitting in. The more desperate they are to fit in, the higher the risk they'll tolerate.
This is why adolescents with food allergies-- and in particular, GIRLS with them, between the ages of about 10 and 16-- are at the very peak of vulnerability to fatality. They would (in some cases literally) rather die than be a killjoy with their friends.
By the way, there ARE no accurate statistics regarding food allergy fatalities, as many deaths are very likely coded inaccurately. COD would be respiratory or cardiac arrest in most cases, but could be termed asthma or something else. Studies bear out that recognition and proper treatment is woefully inadequate, even in emergency room physicians. If they don't see hives, they aren't thinking allergy-- and hives are WORRYINGLY absent in most kids beyond the age of 8-10 or so. They tend to have cardiovascular and airway impairment without a lot of cutaneous symptoms.
Oh, and studies about casual contact, studies about threshold doses for many food allergens? DEEPLY flawed. The reason is that they systematically exclude the end of the bell curve. The reason is that those with the lowest thresholds
also (worryingly) seem to have
the most severe reactions-- and those with very severe reactions in their history?
THOSE patients, especially in children, are USUALLY excluded from studies to start with.What that means is that the most sensitive and severe responders tend to be grossly underestimated in studies intended to determine "how much is too much" and "is this clean enough?" and "how dangerous IS an airplane/cafeteria/contaminated surface, anyway?"
So yes, I'm very sure that kids in the 1% here tend to look as though they are completely neurotic-- probably to the point of craziness. We look like helicopter parents. We walk a tightrope here-- because this IS a huge responsibility to place on a child, and PG or not, our DD14
is a child-- but if we help her in appropriate ways, SHE is unfairly branded as "lacking maturity" even though it would be acceptable if she were 17.
It's crazymaking.
