Lately it feels like there's a million little things happening at once, but no cohesive story worth sharing that has a beginning, middle and end. You know? Right now we are living a lot of middles, and the beginning maybe isn't so interesting and the end is still unknown. And I'm having trouble coming up with things that feel worth the retelling when they feel incomplete. I got a very nice email from a reader who wanted to know how Monkey was doing, and that's a middle if ever there was one. On the one hand: The surgery was such a success, physically, it takes most of my energy not to spend...
I'm not saying I have it all figured out, nor am I claiming I came up with this---it was suggested to me, last year, and I've been doing it ever since---but what I AM saying is that if you have a kid on an IEP and you have meetings to attend, the single most important thing you can do in preparation for those meetings is to BAKE SOMETHING. I'm not the world's greatest baker. Not by a long shot. You don't have to be. Just bake something delicious. And then bring it with you while it's still warm. Why? It's very simple: 1) Low blood sugar makes people grumpy, and 2) It turns out that it's...
Things have been going along pretty well, post-Monkey-carving. Some might even say TOO well. (Please cue up the foreboding music of your choice right here. I'll wait.) Despite my fears that post-surgical Monkey would be a giant ball of pain and anguish and HULK ANGRY HULK SMASH misguided energy, for the most part, post-surgical Monkey has been calm and agreeable and positively robot-like in his apparent inability to recognize that he might be in any pain at all, most of the time. In fact, I was just reading Jean's post about Jack's recent dental work and laughing that slightly hysterical "Oh...
I continue to be shocked and amazed by this child of mine. Years ago, when Monkey started orthodontia, his sensory issues were such that he gave up food and drink for about a week because it hurt and he is stubborn. So I was ready---as ready as I could be, anyway---for this weekend to be utter hell. It almost feels like I shouldn't say it out loud (lest I jinx it), but so far... so good. It's kind of a study in the weirdness of his brain, really. We always say he either feels things way more or way less than a neurotypical person, but then, of course, the last few months of hell were (we...
One of the things I truly struggle with, when it comes to Monkey---still---is that he is pretty much a black belt master in rationalization. He has an answer, a justification, an explanation, for EVERYTHING. Most of the time his conclusions make no sense whatsoever. They come off as elaborate, implausible lies invented by someone who is the world's worst liar. I often look at him and wonder HOW someone so smart can think that what he's saying makes any sense at all. But then I (slowly, and with many internal "DUH!"s) realize that this is what life with Asperger's is like for him; so many...
I meant to come back yesterday and talk a little bit about what the ENT told us; we are reaching the end of the "first line" treatment plan for Monkey's infection, and while I adore the ENT, I think he was unprepared for Monkey's reaction when he said, "Well, if this doesn't work, we go to surgery. Oh, don't worry, we just drill a little hole in your ear and---" Yeah. Monkey---shockingly!---is not interested in letting the good doctor take a drill to his head! Go figure! He voiced his displeasure with this plan, yes indeed. Basically, we can't SEE the infection in the mastoid/sphenoid areas...
It seems wrong, somehow, to call you Small Boy when you are all of eleven whole years old, but I'm not ready to give it up. I'm not ready to stop seeing the shadow of the toddler version of you---all dimples and roundness and wide grin---every time I look at you, either. Sorry. And I am definitely not ready to give up your standard retort to "Hello, Small Boy," which is---of course---"Hello, Medium Mommy." Ten felt like a milestone to me. Eleven feels like a ticking time bomb; the countdown to middle school has begun, and you are still my small boy, still so far away from being ready for...
It's today. I am declaring it to be today. Right now. It's International Special Needs Kids Amnesty Day. So here's the deal: There are plenty of kids with special needs whose challenges you can easily see. You know what it means when a kid is in a wheelchair---you wouldn't expect him to get up and walk. You know what it means when a kid has the tell-tale facial features of Down Syndrome---you wouldn't expect him to do some calculus for you. But for every kid whom you recognize, there's another one---maybe more than one---who has special needs you can't easily discern, and those kids are...
We're going on a camping trip this weekend. We planned it... oh, I don't know. Months ago. Last camping trip of the year, before we put the trailer back behind the house and cover it up and then, two weeks later, I will discover I need something from in there and have to bat my eyelashes at Otto to get him to go out back, undo the cover straps, venture into the cave-like inside, and retrieve it. We don't do as much vacationing as a family as I would like, and as the kids get older it only gets worse. Their time is limited. Rather, I should say Chickadee's time is limited. She's branching out...
