Wednesday, April 8, 2009

A Weak Week

So you could probably tell we've been having quite a time over here. I mean, even worse than usual.

Each time we have a regression of any sort, my resilience feels less and less. But each time I learn something, too.

For one thing, without sounding like I've attended too many technology workshops or read too many books by "futurists" (which actually I think I probably have), there really is something to this concept of "crowdsourcing" and the wisdom of the collective intelligence. This blog is all the evidence I need. Those of you who comment and email and call: you all are a WISE crowd, and collectively you are my map and compass.

And also: my boy, the rooster, is a finely wired little guy, easily short-circuited. Turns out that this week he had some food infractions we didn't know about. Yeah, AHA is right. I will say it again: I didn't believe in the GFCF idea before we tried it, I don't know why it helps the rooster, I don't believe it helps everyone, I don't blame anyone who doesn't want to do it, but it blows my mind; I am converted. For some reason, you give my kid something with gluten in it, and, shazam, coherent dialogue disappears. Ta da, nonsense words and heightened ggression show up out of nowhere. This week he was saying, "shundundeenduh" over and over, in a mocking tone of voice, and screaming, "You're the MEANAGER, the MEANAGER" as he antagonized his littel sister. It's been a long time since we've seen this, since my son could only point to tell you what he wanted, since he answered every simple question ("What did you do today?") with the same one word non sequitirs ("Chanukah!") In the last couple of days, he's jumped off the back of the sofa several hundred times, jumped onto the coffee table several thousand times, and torn apart his room several dozen times. Just as I was about to check myself into a hospital, we figured it out: those are not gfcf tortillas. Goodbye new tortillas. Hello, rooster. Now we're talking, if you know what I mean.

This makes me happy and sad. Hallelujah, we're going back to our tolerable level of misery, instead of the apocolyptic level. But, man, how much does it suck that my son crumbles with something as small as freaking TORTILLAS?! How on earth will we manage to keep them from him forever? Forget forever, how about when he goes to public school in the fall, and isn't at school with me to watch out for him? Surely someone is going to give him a tortilla here or a french fry there, and HE'S not going to say, "No thanks, that is not on my diet!" And then also this, this so important question plaguing me: What else? what are the magic triggers we don't EVEN know about? I mean, I cannot for the life of me guess how the very first person discovered the gfcf diet, but it probably took a lot longer than the whole apple falling from the tree hypothesis, and maybe 20 years from now we're going to find out he was suffering from... I don't know... laundry detergent intolerance, or that all he needed was to sleep facing South or something... and I wish I knew all the answers now, all the solutions to help my boy, all the magic and good mojo and voodoo and all of that, because what if he feels as trapped by all this misbehavior as we do?
Wow, I realize all that sounds like I think he's lost and needs a cure and all that, and as I've said before, that is not my take on autism. Really I'm not talking about fixing the rooster. I'm talking about removing the things that hurt him, because I am here without any scientific credntials to tell you that gluten and casein turn him into a tempestuous, tantrum throwing wreck, and I think he hates it almost as much as we do.

We're coming up on a three day weekend. Wish me luck, and lots of it.


Niksmom said...

UGH. I can so relate to all of this. Hang in there, honey!

FWIW, I've "heard" that a single food infraction can show up for a few days.

If you don't want to/don't ahve time or energy to MAKE tortillas, check this out: They're GFCF!

pixiemama said...

Yes. I know exactly - exactly! - what you mean. You don't want a cure, but some answers, some direction, some TRUTH would be nice. Because some days, it seems to me, that's what's missing.

I love to watch Mystery Diagnosis and learn about all of these obscure illnesses and the ways they are cured or treated. And I often think - someday they will know. Someday.

Anonymous said...

oh man, we have been there. we have!!! i am sending my best to you and the rooster, for this to pass and for the system to clear out and give him (and you!) relief! i'm not sure if it will be your experience, but we did over a year of GFCF with the digestive enzymes for even longer (2 years?) and i thought we'd never be done with it and even though i don't think i've teased out every last thread of food intolerance stuff, we're mostly on easy street with the food.

sending xxx

redheadmomma said...

I would call your week not weak, but very, very important. To actually find an answer, a clear cut answer that a gluten infraction indeed causes such distress with the rooster? WOW! I think it's great! It's like walking around your backyard and you step on a rake and BAM! it hits you in the face and you're knocked down. Well, you just figured out the location of that rake, and you can do everything you can do avoid it.

For the school: at least in our district, they deal with that ALL the time. In Noah's general ed K class, when parents brought in snacks, they were advised that there was a gluten allergy in the classroom. I made regular cookies and gluten free cookies for the group.

If I were in your situation, the other thing I'd do is to create a sheet of paper with two columns, with the two columns: The Rooster without gluten, and Rooster with gluten (or casein, as the case may be). List what he's like without it, and with it. If they see exactly what their consequences are if they don't adhere to his diet, they will be much more motivated to follow it. List what gluten is in: really dummy it down so there are no miscommunications.

Lastly, I will quote you: "But, man, how much does it suck that my son crumbles with something as small as freaking TORTILLAS?! How on earth will we manage to keep them from him forever?"
It does suck. I know lots of people who can never eat peanut butter because they will literally die. They'll never get to have that, but they understand that it's serious business, and it makes them very, very sick. I bet the Rooster would totally get that. I know that staying away from one thing (PB) as opposed to gluten/casein is WAY smaller of a logistical issue. I hear you - it's unfair and it sucks. But I'm so happy for the Rooster that one big huge fat puzzle piece has fallen into place. SO happy. So sorry you had to have the week from hell - I hope you get some peace & some respite soon, friend.