Memorable Long Weekend

by Kristina Chew

categories: acceptance, Housing

Published May 26, 2009 @ 12:27AM PT

As I've written often here and elsewhere, whenever Charlie has a change in his school schedule---holidays, early dismissals, snow days, vacations---we worry. He likes his routine, and we do too.

So maybe it was an unconscious sign of my worry that it was only Thursday afternoon, when the bus driver said, "See you Tuesday," that I realized, Charlie had Friday as well as Monday off, due to the Memorial Day holiday in the US. Four whole days off, and one unexpected, and at a time when things have been really tough. Further, Memorial Day here in the US means it's the end of May and that means June is on the horizon, i.e., summer, time of (often far) shorter school hours and the general laziness of summer days, a combination that has often spelled trouble for Charlie. This year, due to budget cuts, Extended School Year is only four days a week for four weeks for Charlie.

Well, folks, what's the report of four days off from school, with numerous unexpected activities----going to New York's Chinatown for family reasons (I am a West Coast gal down deep, but do have some relatives out here on the East Cost), waiting in the hospital parking lot for a good hour plus while Jim and I visited my mother-in-law? And with a visit on Saturday to Charlie's most favorite place in the world, the part of the Jersey Shore where we've been vacationing for two weeks in August since he was a toddler? It's a place that he absolutely loves; surf, sand, and sun are Charlie's second home; maybe his true home. In the past, he's had a tremendously difficult time leaving the beach. Indeed, back in the fall of 2005, he had such a colossal tantrum in the car as we drove back home on the Garden State Parkway, that Jim and I decided he could not return to his public school special education classroom in our old town. In other years, just the mention of the "beach house" has stirred up (may as follow up the watery references) Nor'easter level bouts of anxiety, so that Jim and me have learned to only start talking about heading down the Shore as we were packing up the car. For a couple of years, the middle of the beach vacation was punctuated with constant iterations of "no beach house!"---Charlie gearing himself for the inevitable departure; one year, Charlie's voice was completely hoarse by the time we headed home.

This Memorial Day weekend, Charlie handled himself very well on our various visits.

It helped a lot that his teacher had put together a little binder with an activity/picture schedule, specifically for the weekend. I set up the schedule with the picture cards every morning and showed it to Charlie, who kept it open in front of him while deploying many crumbs over the couch (it's made for that kind of thing, like all the furniture in our house) and in the car while Jim drove into NYC on Friday night (and found a nice shortcut through Jersey City to get to the Holland Tunnel). I know I've mentioned getting Charlie an iPod Touch so he could use ProLoquo2Go and maybe he'll like that one day, but for the moment, he seems to prefer having an actual physical schedule (like the ones he uses at school) to turn the pages of (and cover with crumbs).

At the beach on Saturday, Charlie was expectedly ecstatic to run onto the sand and up to the waves. He was much more wary as we drove around, telling us "no" about seeing the beach house and "no" (gasp) to getting a burger at a favorite shrimp shack. Jim kept driving and I assured Charlie, he didn't have to get anything but we, his parents, needed to eat and we'd get him "whatever he wanted." We drove past the house we've stayed in without incident and sat at a picnic table where Charlie (now ok with being at the shrimp shack) showed a lot more interest in the coleslaw, ketchup, and tomato than in the rest of his dinner (ok, he nibbled at the burger). We drove past the little amusement park where Jim and Charlie have taken many a ferris wheel ride (am myself too chicken to ride it and yes, I don't do roller coasters either). Jim said "how about a ride" and Charlie said "no" and he meant it this time, so homeward bound we went.

Many changes---but truly, change is good, and being able to be flexible, and trying to tell us how he feels about how things are changing for Charlie: The road has been very rocky of late, but we seem to still be finding a way through.

For all the kind wishes many of you sent our way help----thank you. It means a great deal to know you are all out there. Our school district has again been talking about "temporary residential placement" for Charlie and urging us to go look at some facilities. We will take a look (we'll find out more of those sorts of places, at the very least, and I do have a habit of blogging about.....stuff) but, as you know, we made that promise to Charlie, that we'd be with him every step of the way; that wherever he goes, we go with him.

That's something that doesn't change.