I have two articles with their deadlines looming, one of which I'm frankly afraid to write. So-o, I thought I'd procrastinate. Hello, all! And welcome to a former lurker, Sandi Kahn Shelton, the author of one of my favorite parenting books...mentioned by me earlier, here. It gives me the delighted fizzies to be read by someone whose book I lend (sorry) to the ridiculously sleep deprived.
And on to the time-wasting.
First, an insurance update: hurrah for negotiation and the HR folks, we will have our clotting factor stay as is, under the part of our plan without a lifetime cap. Which means I can remain bitter about these ridiculously low caps on principle, rather than from a sort of personal fear as our costs creep closer and closer to the magic number from the '70s... This also means that our factor, ancillary supplies, home care nursing will all come from a source knowledgeable about our needs, complete with the ability to courier us extra clotting meds in case of emergency. Blessed be.
We're still going to be nicely screwed with the co-pays, but this ball game isn't over yet, and I have hopes of further negotiations..
On a related note, I just got this in from an old friend: http://www.allergikid.com/ Worth a peek, I think, though the idea of allergy-indentifying stickers makes me laugh. If I used those, I think the kid would have what, five? four? square inches of skin free? Oy.
I do appreciate the idea of clearly labeled lunchbags (although you could just use a Sharpie) with matching EpiPen bags, water bottles, etc...the set would be striking and would certainly keep people aware, once they knew what they were looking at.
But the poster just bothers me. I recently heard a story from a woman online about her nephew, who is anaphylactic to peanuts. His school was actively uncooperative in regards to his needs (ADA? What ADA?), but did post posters with his photo and 'Have You Seen This Child' in the cafeteria, along with his allergy. The child was called Peanut Boy by his peers, and mocked nastily.
We now return to an old rant: a disability is only such if the individual accepts it as being so. But the weight of the community can force disorder into disability, even as the support of the community can rescue you from it. Yes, children can be cruel. But I strongly suspect that the children in this case were picking up on the reluctance and probable resentment from the adults around them. It's an old argument on the allergy boards, as to whether schools should be forced into accomodating our children. Legally, they have to. Practically speaking, I think that if an insitution and its individuals don't see the worth in my child irrespective of his issues, and don't embrace him for being valuable in and of himself, well, the hell with them. If you don't adapt from appreciation of the child's value, then you'll drag your feet somewhere, somehow, and the risk as to the outcome is too great to take.
this isn't about job satisfaction, it's about a child's life. As I said to the Eldest's teachers on Monday, until he has children of his own, he will not understand just how much we do, how far we accomodate him. And in doing so, we give him the gift of a childhood and the ability to live (and thrive!) in his own version of normal. The foundation he lays with these years in an accomodating school will shape his approach to the K-8 school, to high school, his attitude will shape others'...and on and on.
Oddly enough, the hemophilia online groups don't worry so much about using the d-word. Perhaps this is because allergy carries a faster, more immediate risk and consequence, perhaps this is because hemophilia is more manageable in a school setting, thanks to prophylaxis. For the next twelve hours, my child will do his best to imitate your version of a normal child...
Whee, but I'm feeling militant tonight! Perhaps that's because I've been reading about mothers who are terrified of labeling their children as disabled, maybe it's my research into intracranial bleeding and CT scans, or that I'm reviewing poems written about men with hemophilia during the HIV/AIDs crisis. Fun stuff, all of that.
Let's try a different tactic: the babes said his first word! And I am one proud mama, because that word was 'book.' Okay, so when he said it, it was more 'buk' than 'book,' but he was holding up a book at the time, and proceeded to point to more books and say his word over the course of the day.
I was so delighted that I took him to the library. And then forgot to feed him lunch, but that's another story, involving Sprint and my ancient, nearly broken cell phone. Okay, and my own tendency to forget lunch.
Meanwhile, the Eldest has moved into a disturbing tendency towards frustrated anger. And oh yes, hitting. Slapping, really, but all the same it's painful to watch. He's a child whose ability to cope, to hold himself together is extraordinary, and while his temper is a hot one, to see him completely collapse into rage is, well, saddening. I wish I could help him, I wish I could find a magic cure for him. Harsh discipline sent him into a spiral of anger and rebellion that went on and on, bringing out the worst in both of us. Ignoring it is unthinkable. The best I can do is recite my little line about not hitting, how it hurts body and feelings, etc, send him for some quiet time with a book and try to love and understand.
Because what's sending him over the edge, insofar as I can tell, is...breakfast.
Previously, before the babes' allergies surfaced (shall we call that b.a.?), the Eldest ate oatmeal for breakfast, he had a range of cereals, and okay so he had them with soy milk, but it was good in his eyes. Now, p.a., these breakfast foods have been banned, as the Eldest is simply not reliable about clearing his breakfast dishes. Though, mind you, he'll competently carry his lunch and dinner dishes from the table to the kitchen, pausing to scrape off his food en route.
Why is this meal different from all other meals? Oh, who knows (irritated shrug). But the upshot is that this was the daily scenario:
scene one: Parent comes downstairs, sets up the Eldest with breakfast and a DVD. Disappears back upstairs to try and shower while keeping the babes out of the toilet bowl.
scene two: The Eldest finishes his breakfast, then moves to the futon, where he curls up for the remainder of the DVD.
scene three: Parent #1 or #2 comes downstairs with babes, having already irritatedly cleaned small toiletty hands, and puts babes on the floor. Babes considers briefly, then wisely heads for the family room at top speed, knowing that edible treasures are there for the taking. Parent slowly, numbly follows.
scene four: Parent reaches family room, finding babes wrist deep in bowl of oatmeal. Parent grabs babes and runs for the sink, while screeching at Eldest something incoherent about responsibility.
scene five: silently, parent beats up self for letting the Eldest be in a situation where he should be held responsible. Mental lecture about having too high a standard, demanding too much.
scene six: repeat all above.
Our solution to this has been to try and have only breakfast foods that are friendly to everybody. This seems to mean either the inedible buckwheat flakes, bland rice cereal (yup, they make it for non-babies. but why?) or puffed rice. The Eldest has expressed deep disdain for puffed rice, explaining that it's only crunchy on top once you add the milk. True, that. Ugh.
So, we tried corn cakes. Nice, thin corn cakes with jam or Tofutti cheese or soynut butter. And now, of course, the babes is allergic to corn. (thwack, thwack head against desk) We tried shifting to rice cakes, but the challenge of finding a rice cake uncontaminated by sesame has thus far overthrown me. In a moment of inspired idiocy, I did find a rice cake without sesame, that had millet, flax and....spelt. Three days after its introduction into our home, the babes was up all night scratching.
Too tired and too stumped to find an alternative, the Eldest is eating his corn cakes, the babes is eating his rice cakes...and I'm gritting my teeth. Hollered at for not managing his breakfast, disturbed by not being the center of attention, and continually surprised by having to share his toys, the Eldest is upset. Frustrated. And offering up symbolic swipes at me - mostly me - to indicate that he's at his breaking point.
Ah, but I'm sorry, love.
Cooking for the cook: yesterday, a friend came over and our children played together. She's a lovely cook and a delightful person, who was so excited to be fed! She left, vowing that she'll come back and cook in my house for me. I can hardly wait.
here's what we had:
Short-Cut Indian Tomato Soup (wildly adapted from Indian Flavors, by Marut Sikka, pg 62)
28 oz can diced tomatoes, plus 4-6 fresh, quartered
3 Tb olive oil
2 tsp cumin seeds
4 green cardamom pods
1 stick cinnamon
2 bay leaves
salt, black pepper to taste
1.5 tsp ginger, roughly chopped
10 cloves garlic, smashed
Heat oil, adding all the spices excepting salt and pepper. Saute until the mustard seeds pop. Add tomatoes and salt. Stir.
Add water, then bring mixture to a boil. Reduce heat, cover, simmer for 30 minutes. Remove from heat and puree. Add black pepper and serve.
Optional: add fresh cilantro
Quickest Method: use pureed tomato, simmer for 5-10 minutes and invite the kids to play 'Spot That Spice.' It'll be less flavorful, but very very quick.
Oven-Roasted Salmon Look-Alike
salt (sea salt is good here)
fresh black pepper
steelhead trout (cheaper than salmon, a bit fattier but less fishy tasting)
Cut up sweet potatoes, carrots into chunks. Toss in a bowl with perhaps 1 Tb olive oil, sea salt and pepper. Dump into a casserole dish. Roast at 450 for 45-50 minutes, or until browning.
Place fish on top, sprinkle with olive oil (lightly), salt, pepper and chopped sage. Broil for 10-11 minutes.
Serve! The sweet potatoes should be meltingly soft and sweet, while the fish is pleasingly crisp on the outside, soft inside. Feed this to my children and see the babes look horrified, while the Eldest insists that this is the best meal he's ever had. (To my delight, he has one of those regularly. The joys of feeding a budding foodie...)