Less stuff, more substance

I've always preferred to spend money on experiences rather than things. That's why, even though we've never found the funds to replace our 1979 Formica countertops or the lovely "harvest gold" range top of the same era, we shell out thousands of dollars on vacations whenever we possibly can. It's why I'm willing to spend three times as much on a nice dinner out than I would ever spend on, say, a sweater or a pair of shoes. And it's why, on a night I'm not needed at work, I'll forgo the pay to spend time with Jeff and Elijah instead.

I think about this often as I stand in our basement playroom, surveying the enormous pile of games and toys that Elijah has accumulated over his six years on the planet. Like any typical American kid, he has way more than he needs. But unlike typical kids, he never really has gotten excited about much of it. Part of that is related to his autism -- he's totally "out of the loop" when it comes to kid culture, and he has no idea what the hot toys are -- or even that there ARE hot toys. Not once has he ever requested a gift of any type, for Christmas or Hanukkah or his birthday (unless you count his lifelong obsession with basketball goals, which he now wants about 20 of). Not once has he begged for something he's seen advertised on TV. Not once has he walked up to a store shelf and asked me to buy one of the items for him.

I got to thinking about the absurdity of consumerism while I was buying supplies for his birthday party a few weeks back. After picking up some basic partyware, I was wandering the aisles, looking at the astounding array of cheaply made junk designed to be purchased as "party favors" to fill little gift bags for the young guests. You know the stuff I'm talking about -- little plastic toys and jewelry and such that seems to fall apart almost at once.

It occurred to me that this stuff, all from China, was no doubt manufactured in one of those industrial cities that belch filth into the sky day and night and coat everything they make with toxic paint. Then it was taken in big, gas-guzzling, carbon-monoxide-emitting trucks to the seaport, where it was shipped across the Pacific, only to be placed on yet another greenhouse-gas form of transportation until it reached the middle of the country, where it sat on a store shelf until some well-meaning mother paid a few cents for it in a party-supply store, and probably took it home in a plastic bag. From there, it goes into a gift bag for a child who plays with it a few minutes at most before losing interest (or seeing it fall apart). Shortly thereafter, it's added to an already overflowing landfill.

If it were only little things, perhaps it wouldn't bother me so much. But the sequence of events I've just described applies to a lot of things that take up much more space in those low-mpg trucks -- and eventually in landfills. I'm afraid it's going to apply, eventually, to many of the toys now filling our basement. You know, those toys that Elijah never had much interest in to begin with, for whatever developmental or personality-based reasons.

This isn't to say he doesn't appreciate his gifts. Some of them he has been fanatical about -- Tinkertoys from my dad a few years back come to mind. He spent months carrying around a set of dolls from "Toy Story" from my sister and her boyfriend. He absolutely loves a scooter we bought him with money from my mom, and many of his favorite books are from Jeff's parents. Currently, he's head-over-heels crazy about a computer program Jeff's sister gave him.

But this summer, as I've seen how much he's developed at summer camp, it's become very clear to me that what he needs is not something that comes in a box. (Yes, I know I'm starting to sound like Dr. Suess here; I won't launch into the moral of the Grinch story.) He needs experiences like the one he's getting at camp -- playing sports and learning teamwork and taking swimming lessons and going on field trips and so on. Those summer months can be a developmental death trap for kids with autism, who need structured settings all year round, not just during the school months.

Problem is, summer camp is expensive, even for typical kids. For kids with autism, where a much higher adult-child ratio is necessary, they're even more expensive.

That's why, from now on, we're asking everyone in the family (but thank you to those who are not in the family, for reading this blog anyway! All 10 or 15 of you!) to no longer buy Elijah gifts for Hanukkah and Christmas and his birthday. Trust us, he already has plenty! And we'll make sure he has a few modest presents (from us) to unwrap on those days.

Instead, please consider making a donation toward summer camp, in whatever amount you would have spent on a gift. We're setting up a bank account next week that we intend to use ONLY for summer camp, so we're getting a good start on next year. In addition to a hefty "seed money" contribution of our own, we're using some money my mom left us for gift-buying purposes, as well as a check that Jeff's parents sent for the same purpose (yes, we had intended to get him a small trampoline and probably still will, but we're much more excited about the camp fund!)

My hope is that a few small donations from family throughout the year, along with larger donations by us, will cover most of the cost of camp each summer. At this age, he's just going to a day camp (and a wonderful one it is!), but as he gets older, I hope to give him the experience of a real, in-the-woods sleep-away camp. There is just such a place not far from here, with a session each summer devoted to kids on the autism spectrum. It has all the traditional summer camp experiences: Swimming, fishing, horseback riding, hiking, sports, arts, campfires and s'mores! It's in very high demand and draws applicants from several states, so there's no guarantee we'll get in, but we're sure going to try. I'm even hoping to be involved as a volunteer -- although I must admit I probably wouldn't if they didn't have air-conditioned cabins!

So, if you are on that list of people who always feel obliged (and stumped) when it comes to gift-giving for Elijah, be stumped no more! Help us put a stop to materialism before it even starts for Elijah. Help us make his life more about substance and less about stuff.

Thank you!!!!!

There's no place like home

I always knew Elijah would love "The Wizard of Oz"; it was in his genes. (I had been Munchkin of the Day on a local radio show many, many years ago.) So I was excited to see that it was going to be playing uninterrupted on TCM this past holiday weekend. Yay, DVR!

Boy, was I right. He was riveted to the screen for the entire movie. He loved the music, the color of OZ and especially the main characters (the Wicked Witch didn't scare him, but the flying monkeys necessitated Daddy sharing the chair for hugs). When we went to the park that night for fireworks, the walk back to the car was punctuated by Elijah's singing of "We're off to see the Wizard, the wonderful Wizard of OZ. Because because because because because because because because" (at this point Daddy, for the peace of mind of anyone walking near us, informed Elijah that it was because of the wonderful things he does.)

His love of the film hasn't waned (like any child, he will watch something that he likes over and over again), and repeated viewings have caused his creative side to emerge. At the top of this post is the front of a card he did today. Below is the inside ...

This is one of many wonderful things he does!

The Cadillac of camps

So it's been awhile. But give me a break, OK? What with hauling Elijah to and from camp every day, working until midnight four nights a week, trying to make it to the gym four days a week (success!) and trying to keep the jungle known as our yard under control (failure), blogging has fallen a bit by the wayside for both Jeff and me. I see that we haven't even updated those "Spring Arrives At Last" pictures there on the right. Perhaps by the first snowfall, we'll get around to it.

All in all, we've been having a good summer. Elijah's camp experience is going well, except that the therapists are a bit frustrated with his inattentiveness (which I refer to as spaciness) and his failure to follow directions (which I refer to as just plain annoying).

It's been suggested that we try a gluten-free diet, which, if you know anything about autism, is the standard well-meaning suggestion from well-meaning people who do not share a home with an extraordinarily picky eater -- a topic I covered thoroughly in my June 9 post and will spare you from rehashing here.

I'm all for improving his diet, but once you eliminate pizza, mac and cheese, bagel chips, pretzels, cookies, granola bars, bread, crackers, cake, spaghetti, all other pasta, all other baked goods and anything that involves flour or wheat in any form, you pretty much eliminate the entire American diet. (Which, come to think of it, is the whole point of that documentary "Food, Inc." and is, in theory, not a bad idea.)

Yes, adults with celiac disease manage just fine without gluten, but adults with celiac disease understand WHY they need to manage their diets very carefully. Just try explaining the (scientifically tenuous) connection between autism and diet to a 6-year-old who has no idea what the words "autism" or "diet" mean, much less the word "gluten," but knows he's very hungry right now and Mommy won't let him have a granola bar OR bagel chips OR mac and cheese OR waffles OR cereal OR toast OR .... you get the idea.

I'm sure at this point you're wondering, "Why doesn't she just try the gluten-free alternatives in the supermarket?" To which I can only reply, have YOU ever tried them? If so, my sympathies. Super-mint toothpaste will help get that taste out of your mouth.

So, on we go. We're within six weeks of the start of kindergarten, and state budget cuts have made it extremely unlikely that there will be a para in the classroom to help Elijah and other "spacy" (or, if you prefer, "special needs") kids through the day. It makes me really dread the school year. And really grateful that I'm not a kindergarten teacher.

Still, I'm trying to go forward with some degree of optimism. At the very least, we have Elijah in a good place for the summer -- a much better place than being home with a sleep-deprived night-shift-working mom. (Note to self: In next life, be born wealthy and never have to work for a living. There! I feel more optimistic already.)

As a measure of just how great this camp is, consider this: For Elijah's birthday, the camp arranged for all the kids to take a limousine ride to Chuck-E-Cheese (which could probably just rename itself Chuck-E-Gluten).

Limo rides are no big deal to a lot of kids in my area -- no self-respecting 8-year-old girl around here would be caught dead throwing a birthday party that didn't include a limo ride and some sort of "spa day" -- but I am of a more down-to-earth nature, and this was Elijah's first-ever view of the inside of a limo. (Mine, too, actually. Until three weeks ago, I could always note with pride that I would never be pretentious enough to go anywhere in a limo. Now I've wasted that source of pride on a franchise pizza place featuring a giant singing mouse.)

So here it is -- the gas-guzzling, global-warming Cadillac Escalade behemoth that transported a group of wide-eyed kids and their moms (and in Elijah's case, grandma) for a spin around the suburbs and to the much-beloved Chuck-E-Cheese.








As everyone used to say in those months after Sept. 11, that's why they hate us!