December 28, 2006

2007: awaiting the compound fracture

I feel like I should be looking back on the trials and triumphs of the past year, or making bold proclamations about what I will do in the new year, but frankly I’m too logy from eating home made toffee and drinking Starbucks cream liqueur to do either.

Instead, I will make a prediction: I predict that 2007 will find me in the emergency room with a kid who has broken something. Something ATTACHED to him, I mean, not just a coffee cup or my new iPod.

I predict that 2007 will be The Year of the Cast.

Henry is, of course, the most likely candidate for major breakage, because he is hyper and impulsive, of course, but also because he is a climber. He has always been a climber; before he could walk properly, he climbed. He would pull up on the sofa or a table and start working to get his fat little baby leg up on the surface. When he was two he learned to climb INTO his crib (not out, thank god, but IN, which seems to me to be WAAAY harder). He attacks playground equipment, swinging and clawing his way from one place to another. Also, he is fearless and has an unnaturally high pain tolerance.

All of which will clearly lead us to disaster.

Recently, he’s been climbing on our swingset, hanging upside down from the crossbar over the swings. It’s amazing to watch him, to see him strategizing where to put his hands and feet, to see him holding on so tightly and carefully. I constantly find myself saying, LOOK AT HIM! HE’S NOT SUPPOSED TO BE ABLE TO DO THAT! KIDS WITH N.L.D. HAVE TERRIBLE BALANCE AND POOR COORDINATION! BUT NOT HENRY! HA HA!

So yes, I am proud of his “tricks,” as he calls them. And also terrified because one misplaced hand and he will break his arm, or possibly his neck.

I am equally worried about Charlie, who is not as daring as Henry but is prone to try EVERYTHING that Henry does, and who also really likes to jump on his bed. His favorite swingset related game is to get a running start and fling himself at the actual swing, catching it under his arms, right across his rib cage; he lifts his feet off the ground and yells, “I’M FLYING!”

He will most likely break a rib, although there is also the possibility that he will overshoot the swing and plunge head first into the rock-hard ground underneath.

Perhaps 2007 will be the Year of the Neck Brace.

Recently, the New York Times ran a terrific article* about behavior therapy for kids with A.D.H.D.; in particular, the article focused on programs that teach parenting strategies. The article summarized the approach in this way: “Behavior modification for A.D.H.D. and for related problems, like habitually disruptive or defiant behavior, is based on a straightforward system of rewards and consequences. Parents reward every good or cooperative act they see: small things, like simply paying attention for a few moments, earn an ‘attaboy.’ Completing homework without complaint might earn time on a Gameboy. Parents remove privileges, like television and playtime, or impose a ‘time out,’ in response to defiance and other misbehavior. . . . And they learn to ignore annoying but harmless attempts to win attention, like making weird noises, tapping or acting like a baby.”

This is the program we follow at home, and honestly, the hard part is that last bit, about ignoring the “annoying but harmless” behavior. I have made a conscious choice to use outdoor play as a way to channel the craziness, the yelling and running and jumping, all of which are expected and acceptable behavior for four and six-year-old boys just NOT in a house full of furniture. Instead of yelling or sending everyone to timeout or pouring myself a stiff drink at 3:00 pm, I send the boys outside, where they CAN run and jump and yell, and for the most part this is a good thing. But in 2007, I am telling you now, it will land me in the emergency room.

Mark my words.

*This article was the last in a series; you should get yourself some coffee and read all three. Really.

December 26, 2006

Boxing Day does NOT mean you can hit your brother

Hello! Is Christmas over yet? I feel like the groundhog, warily peeking out from my wrapping paper den to see how the rest of the world is going on.

I will most certainly see my shadow, as I am twice as large as I was a few days ago, what with the non-stop eating.

Today we completed Christmas: Part Three. We started the festivities on Christmas Eve morning, with family gifts; the eating started at lunch time and carried on late into the night. Christmas day, Santa left presents, and then we relocated to my in-laws (at 7:45 in the morning) to open MORE presents. And eat. Did I mention the eating?

My parents flew in later in the day, although their luggage took a little side trip to Branson (possibly to see the Osmonds, we’re not sure) and we ate (again) with my in-laws and then Wade and my dad recovered the lost luggage. (When they got to the airport, there were suitcases stacked everywhere, not locked together or secured in any way at all. My dad found their bags and was musing about what to do–walk back up to the ticket counter and talk to someone from the airline? find an airport security guard? look for Santa Claus?–when Wade said, “Get the bags and let’s go.” And so they did.) This morning, we had presents with Nana and Papa, and then we ate some more. Today was a little different, though, because I actually cooked, rather than just availing myself of the fat of the land (or whatever Wade’s mother was serving). I cooked TWICE, in fact. And no one died or contracted a food-borne illness. Score one for me.

And now I’m ready for Christmas to be over. Please.

We had a lovely holiday, but by mid-day yesterday I was starting to lose my grip just a little. Henry and I went to the airport to pick my parents up at 3:00, which was funny because their flight didn’t get in until 4:00 (I read the e-mail from my dad wrong, ha ha, such a riot). When they DID land, my mother called me to say lost our luggage! come get us! and I said, “Okay! At the United baggage claim!” and she said, “No, American,” and I said, “Right! United!”

And she said, “Susan! Have you been drinking?” Oh I wish. But no, I was just really really tired. And perhaps a little high from wrapping paper fumes. Is there such a thing?

I’m still a little sluggish today, which I’m blaming on the Leftover Casserole we had for dinner. I cooked a turkey breast today SPECIFICALLY to make this casserole (layer turkey, peas, stuffing, gravy, mashed potatoes, more gravy; heat at 350 until warm through; eat up!), even though the idea is that you use what was left from the actual turkey meal. Why bother with the turkey dinner when the leftovers are the best part?

See, I really have lost my mind.

December 23, 2006

We wish you a merry Christmas . . .

and a happy New Year!

November 2006

December 21, 2006

poTAYto, poTAHto

Henry is telling me a story, about some aliens who come to conquor Earth (I think; the story went on for literally two hours and I may have drifted off at a few points. Anyway . . . )

Henry: When they got to Earth they realized that some of the parts had been tooken–

Me: Taken.

Henry: What?

Me: Taken. Tooken isn’t a a word.

Henry: Yes it is.

Me: No, it isn’t. It’s taken.

Henry: But I like tooken.

Me: Yeah, it sounds kind of cool, doesn’t it? But when you’re writing a story, you need to use words that people recognize or they won’t know what you’re talking about.

Henry: I like tooken.

Me: Okay, but it’s TAKEN.

Henry: Okay, Mom, YOU say taken, I say tooken.

Me: Let’s call the whole thing off.

Henry: Right. Wait, what?

Me: Nothing. Finish your story.

Henry: Okay. So they got to Earth and some of the parts had been tooken . . .

December 20, 2006

Janet!*

Cookies from Adria. Thank you, Adria!

On Saturday, Wade took the boys to the zoo; on the way, they drove through the car wash because Wade couldn’t stand how filthy my car was. The boys weren’t thrilled about the detour, but Wade ignored their whining because DIRTY CAR! MUST! BE! CLEANED! RIGHT NOW! And clearly, I wasn’t going to do it.

As he pulled into the car wash, Charlie piped up: “DAMMIT, I didn’t WANT to GO to the CAR WASH!”

I don’t feel guilty about teaching Charlie to swear; I don’t have time. I’m too busy feeling guilty about forgetting to take cookies to his school for the Happy Birthday Baby Jesus! party and for forgetting that he was supposed to wear his special purple Pre-K t-shirt today. Of course, because I’m a good mommy (and by GOOD I mean MOTIVATED BY GUILT and also possibly INCREDIBLY STUPID), I went home after carpool and picked up his t-shirt and then went to the grocery and bought cookies and then drove BACK to his school and dropped them off. In the rain. With Henry in tow.

And as if that weren’t enough, I’m still feeling guilty because the cookies had red and green sprinkles on them; they were supposed to be PLAIN, so that the kids could decorate them, but see, when you wait until 8:00 am on the DAY OF THE PARTY to run to the closest grocery for the cookies (which you were probably supposed to MAKE YOURSELF, from scratch, using your Grandmother’s carefully guarded recipie) you don’t have much choice. It was sprinkles or nothing.

In the end, of course, who cares what the cookies look like? We’re talking about four-year-olds! And when I took Charlie’s t-shirt in, his teacher said, “Oh, no one else remembered either.” So I’m in good company. And I’m sure at least one other kid will say, “I WAS SUPPOSED TO WEAR MY TEE SHIRT TODAY, BUT YOU FORGOT!” at the end of the day, and some other mom or dad will feel terrible, too.

Merry Christmas, dammit.

*Of course . . .

December 19, 2006

leaves of three

Henry is out of school this week, so he and I have been hanging out together. Yesterday after we dropped Charlie off, we went to get some groceries (specifically, toilet paper and pancakes, both of which are staples in our house). As we walked from the car to the store, Henry told me about how a temporary tattoo his friend had reminded him of the time that he played in the poison ivy in our yard and had a horrible allergic reaction. “And THEN,” he said, “I was thinking about the poison ivy, and I was ITCHY all afternoon!”

“I hate it when that happens,” I told him.

He thought for a moment, and then said, very seriously, “Mom, will I be big enough some day to get a job?”

I tried not to laugh. “Yes,” I said. “Absolutely.”

“Good,” Henry said happily, “because I want to invent a MACHINE that will TELL ME when there’s poison ivy, so I don’t step in it!”

We talked about how you can recognize poison ivy when you see it, and how I have no idea what it looks like because I’m not allergic to it (which explains why I let my four-year-old PLAY in it one lovely summer day), and how Henry will most certainly always be on the lookout for the leaves of three when he’s in the woods because he’s so horribly allergic.

But later, when I was giggling with Wade about “Will I be big enough to get a JOB?” I started to think about what my hopes are for Henry when he’s bigger. For the most part, I think I hope for the same things any parent does; I hope that Henry (and Charlie, too) finds his place in the world. I hope he finds work he enjoys, and that he is surrounded by people he loves. I hope that he is aware of how his actions affect other people; I hope he will do things that make the world a better place.

Most of the time, I don’t worry about these things, but sometimes, when Henry is having a particularly hard day, I do. Yesterday he had a great day; he was happy and peaceful and entirely pleasant to be around. But he was also just himself. We spent some time at the mall, looking at the decorations and waving at Santa and watching the big fountain. Henry rode the mechanical motorcycle and a few other elaborately expensive rides, because it’s Christmas and I was feeling generous. When I ran out of quarters, he struggled with his disappointment, and asked me probably fifteen times if I was SURE I didn’t have any more money; once he said, “You should have brought more quarters,” but he said it sadly, not angrily, because we had talked, more than once, about how many quarters we had, and we had counted them again when we got to the mall, and counted how many rides they would buy. He was disappointed, and it was a huge struggle for him not to give in to the disappointment, but after he spent about fifteen minutes just sitting in the helicopter, he decided that it was okay and we could go on to the next thing.

We watched the fountain for a long time. Henry called out “WHOA!” every time the water shot into the air; there was another child, probably about two years old, doing the same thing. There were also some girls about Henry’s age, who stood quietly and clapped politely when the fountain stopped running. Henry craned his neck to look up at the ceiling above the fountain, and said, “Do you think the water ever touches the roof there?” I said I thought not.

Last night, I said to Wade, “It’s so interesting to watch him. He just doesn’t see things the way other kids do, I think.”

And Wade said, “Yeah, but he’s also just like other kids.” And that’s the hard part: Henry is both entirely different and exactly like other kids.

I said the other day that I had reservations about the new federal funding for autism research. While I think that a 50% increase in the amount of money spent on autism is a good thing, I wonder about how this money will be spent, and how that spending will help kids like Henry. Or kids not like Henry.

The most frightening and frustrating thing about autism and related ASDs (which is where Henry falls) is the fact that despite what we know, we don’t know anything. There are a whole range of theories about what causes autism, and an equal number of theories about what might cure it. The possibilities are often overwhelming.

Federal funding for autism research is a good thing, there is really no way to argue with that. But this particular bill, signed just today by the President, limits the research in very specific ways: according to CBS news, “the legislation provides the National Institutes of Health with a list of possible research areas related to autism spectrum disorder, including an examination of whether the increase in autism diagnoses is caused by environmental factors.” Limiting what researchers can pursue will limit what they might find; in the five years allotted by the bill, it is entirely likely that no cure or cause will be found. And in the meantime, more kids will be diagnosed and more parents will need support.

In the two and a half years since Henry was diagnosed, I’ve met a lot of parents of kids like him. The one thing we all have in common is a sense of constantly struggling to fit all the pieces of our lives together. We cobble together teams of doctors and therapists who may or may not all agree about what is best for our child; we argue with insurance companies who choose not to pay for this evaluation or that drug; we meet with teachers and school administrators who don’t always understand and won’t always meet us half way. We explain, over and over, to friends and family, why our child is the way he is.

We worry about our marriages and our other children. We worry about our own health and sanity. We worry that because we don’t really know what we’re doing, we are doing all the wrong things.

We love our children just the way they are, but often the way they are is exhausting.

Of course, I have a child who is barely on the spectrum–he has, I like to joke, a touch of the autism, like people say they have a touch of a cold or the flu. I’m not able to really think about “curing” Henry, because that implies dramatically changing who he is, which isn’t what we want. I would imagine that for parents of profoundly autistic children, the idea of a cure is tantalizing, and I sympathize with them. But I doubt that in five years the wonderful people at the NIH will actually find a way out for those particular children; instead, I think we will see this money going to very specific research that will, most likely, not leave us any more knowledgeable about why our kids are the way they are.

My interest lies not in changing my child but in changing the world he lives in; if I have learned anything about Henry and kids like him (and there are, it seems, so very many kids like Henry) it is that they don’t process the world in the way the rest of us do. Because of this, they are perpetually out of synch, out of step, straggling behind, despite the fact that they are intelligent and capable. I would like to see more funding going to developing therapies and strategies for helping kids with ASDs function and succeed in the world. I would like to see better funding for school support programs, for teacher training and multi-sensory classrooms. I would like to see more specific diagnostic criteria and more clearly articulated treatment strategies. I would like to see more creative approaches to teaching and guiding these kids.

I think, in the end, this bill is designed not so much to solve a problem but to make people feel good. Merry Christmas! Let’s cure autism! Perhaps I’m being cynical, but I want to see more. I’m tired of looking for the poison ivy all the time, especially since I still have no idea what it looks like, even though I know it makes my child itch. I just want to enjoy the walk in the woods.