We’re blanketeers!

As you may have guessed, we really enjoy Disney World, so when the ad campaign came out late last year to “Give a Day, Get a Disney Day“, I thought I’d see if there was something we could do together to volunteer.

The process was easy; search through hundreds of opportunities all over the United States as well as Puerto Rico and Canada. Give a day of service, and get a free day at Disney. At $79 per ticket, that’s a deal for us. So we started hunting.

In Albion, Pennsylvania, we found Project Linus, whose mission is to”provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer “blanketeers.” ”

How great is that?!

As I have a huge closet full of fabrics, lots of pairs of scissors and a sewing machine, we went to work. The Doctor and Little Miss cut out squares, and I’ve been sewing for a couple of weeks now in the evenings, piecing together quilts.

The Cabana Boy has pitched in supervising, and pinning fleece backs on the quilts. Little Miss is also my official cutter–as I put together strings of squares, she cuts the threads apart and gives them back to sew even longer strings. It suits her sense of order.

We’ve had a really good time, and we’ll be donating probably ten quilts total by the time we sew up all these squares.

Two of our creations, with proud participants

You might have noticed I didn’t mention the Captain above. This is because like the immortal Bartleby, the Asperger’s child preferred not to. His exact words were “That sounds like too much work for one day.”

So we took him at his word. When we go to Florida later in the year, I expect he’ll stay here with a relative. The decision has typified his thought process of late; he doesn’t choose effort in any field, home, school or family. We hope by making him live with the natural consequences of his choices, maybe someday he’ll “get it.”

As I sew these bits of fabric together, I think about the children who might have them, and hope they can find the sense of love and family togetherness that we have, in creating them.

Barbara Bush said, “To us, family means putting your arms around each other and being there.”

Even if we can’t hug these children, these blankets can wrap around them and remind them they’re loved.

To find a chapter of Project Linus near you, see here.


C’mon, you know that chorus! Everyone sing along!

Okay, so some of you aren’t old enough to remember that song. As vacations go, this wasn’t bad at all. No visits to the emergency room, state patrol pull-overs (Yes, B, your Arizona adventure remains alone in the annals of family history!), hardly even a sunburn. Little Miss did go through three pairs of sunglasses, leaving each along the way. There’s a Mickey hoodie left behind at Pensacola, but that will come in the mail. Everything happened on the day it was supposed to happen and no unexpected surprises.

While this is the stuff of parental satisfaction, it does leave something wanting on the Family Story scale. The afore-mentioned traffic stop, where mother saved the day when the Arizona Highway Patrol discovered our darkened headlight, for example (see comment 4). We still talk about that. Or the night in some muddled single-parent state, I let M, at 17, drop me and her young sister at Phantom of the Opera in Toronto while she took B, maybe 14, to find some concert in the eastern suburbs of the city with my car. By themselves. What was I thinking? I was just grateful not to be driving in downtown Toronto, surpassed in crazy driving by maybe only Chicago.

Or the time we picked S up after a custodial visit and her mother sent along a huge purple Barney cake half-wrapped in Saran. I was one of the few in our crowded van of seven who didn’t end up sitting in it at some point. Maybe that was the same year M lost her retainer in a Days Inn pool in Charlotte and while all the girls were diving to the bottom of the pool to help her find it, only poor S came back to the surface with a handful of…poop. (She insists she has yet to stay in a Days Inn again, even some 20 years later.)

But this will be the vacation when Little Miss learned how words on car license plates told you where they came from, or how she learned her way around the Disney resort so she became our navigator, telling us where we got on and off the buses. This was the magic time when the Cabana Boy and Ditto Boy became the roller coaster Mountaineers, traveling together on Space Mountain, Splash Mountain, Big Thunder Mountain Railroad and scariest of all, Expedition Everest (click video if you dare!).

This was also my first visit to M at her house since she grew up. It is odd visiting your grown children, seeing how they do things–differently than you, even. And like I always said when they were kids, “When you have your own house, you can play your music as loud as you want.” Sure, after everything I said, THAT’s what she remembers.

But the one axiom that always applies, is that we need the vacation AFTER the vacation, to get caught up on everything that we missed! I’ll be posting more later in the week, when I can see my desk again. Till then, think warm thoughts!

Several shades of insanity

Seven beautiful sun-filled days at Disney World sounds like heaven, doesn’t it?

Leaving 18 inches of snow behind, gradually shedding outerwear and then long sleeves and then…but wait. It’s…below freezing.  In Orlando, Florida. ?!?!?!?!

Well, in the daytimes it’s 50, which is a good 40 degrees better than home. The Disney resort is lovely, as expected–I’ve got to give it to Disney, they tend to the details and go the extra mile. Always. There is free bus and water taxi transportation to all the Disney locations we want to go to, so we save gas. We have a refrigerator in our room, so we can save money on breakfast and snacks each day.

But…below freezing?  What’s up with that?

Never mind! we declare with a brave sense of adventure, and we head off to the parks for seven glorious days. The first day we hit EPCOT early in the morning, faces shining with excitement, and take care of the Guest Assistance business (more on this in another post) and stay till after dark, tired but happy. Then it’s Animal Kingdom, which is open three extra hours that night, and the next day Disney-Hollywood Studios. By this time, we’ve used the pedometer to see we’re walking from 6-10 MILES per day in the parks, and our tails are dragging a bit.  We’re leaving for the park at noon…and coming back by maybe 7 p.m.

As the week progresses, it FINALLY starts to feel like Florida, and Sunday we run errands in the morning, hang at the pool in the afternoon, and then drop the Cabana Boy off at the Greyhound to ride home alone for his new job; we get to the Magic Kingdom about…7?  and stay till midnight.

What?  We still have one more day?  We have to go to the theme park? Again?

So we  hit the high points of the Animal Kingdom, enjoying them with more enthusiasm as the day goes on, resolving that seven days is too many in a row. A seven-day vacation would have been much better served with A) more warmth and B) five days of park tickets and two days of time off to relax at the pool and take little day trips to explore. So noted.

We’re on our way home, stopping to visit M and the grandkids in Pensacola.  We may get to the beach today if the severe weather doesn’t hit; tomorrow, the Naval Air Museum. Then the weekend drive across half the country back to the snow.

The trip has been a good one, full of growing moments and photo opportunities, and over the next week I’ll post a couple of pages about autism and Disney, and how Ditto Boy got a lightsaber fight with Darth Vader on stage.

The good news, of course, is that spring will now come in a month or so, and we’ve seen the promise of sun.  Think spring!

Could it be Magic?

As any family with autism knows, vacations are a special circumstance. The best advice is to know what you’re up against and prepare, prepare, prepare.

For our upcoming trip to Disney World, I’ve been immersed in information for several weeks, both with this book, this book, and hours of Internet research. We’ve taken the kids once before, three years ago, and they have fond memories, so they are all as anxious as we are to go again. (Even more so to escape the 20 inches of snow on the ground we have here!!)

What I’ve found over and over again are stories from parents of children with autism who swear that their child has changed for the better after experiencing Disney. A child who hasn’t spoken before starts naming the rides he’s been on with enthusiasm. Others talk about how their child made a personal connection with one of the larger than life characters, how the first smile appeared–many different tales of joy.

We know for a fact there is something about the place, because after our last visit, Little Miss evolved about six months’ worth of development in the next two months. Her language grew immensely. She couldn’t have explained then, but now recounts in great detail what her favorite rides were like. It did seem like magic.

Jessica Rally explains this effect in terms more scientific: “It may seen strange to parents that a child could go to a large public place, filled with crowds, forced to wait for long times in lines, and not have an outburst. But the secret behind Autism treatments isn’t Disney Magic, it’s the fact that amusements parks like Disney World get a child’s senses involved in everything happening around them. The park’s layout never changes, and overall it is a predictable learning environment.”

She goes on to say that a parent can certainly involve a child’s senses with specific learning tools and techniques anywhere, not only at Disney.

True enough.  And I’m letting science guide us to some extent, as I’ve got my doctor’s letters for a Guest Assistance Pass for our two explorers. We’ve watched the Travel Channel updates on the parks, so the kids know what’s changed. We’ve scoured the Disney site and prepared the children for the attractions that are not available at present, to avoid surprises and meltdowns. We’ve done social stories about what might happen if a ride breaks and we have to skip it. We’ve packed our favorite snacks for the two day drive and gotten our bookbags full of homework. We’re anxious to see how the new ADD meds affect the ability to enjoy expanded days of fun.

But when we leave tomorrow, we’ll be thinking a lot less about science and a lot more about the magical possibilities ahead. 🙂

Have you played the “A” card?

Parents of special-needs kids often have a lot to cope with: meltdowns, perseveration, echolalia, single-focusedness, sheer obliviousness. All this coping tends to drain away patience and sometimes even your ability to remain polite, especially when people who don’t understand get on your last nerve. Often at Wal-Mart.  I’m not sure why that is. Maybe they’ve got some sort of blue-light special on last straws.

Vice Presidential candidate Sarah Palin says that special-needs kids will have “a friend and advocate in the White House,” if the Republican ticket is successful. She says this, no doubt, based on the fact that she is the parent of a special-needs child. So, isn’t she using her Trig as an excuse to get special treatment, i.e. to get people to vote for her?

Is that wrong?

I stopped in mid-rant today to contemplate whether I’ve used my children’s condition as a crutch/excuse from time to time, and had to conclude that I had. For example, the time I was running late to take Captain Oblivious to the eye doctor, and they’d given up on us, ready to close up shop. When I explained I’d been picking up the children from camp, and I got held up because of an issue with a therapist, and dropped the “A” bomb–autism–suddenly they turned on the equipment and welcomed the boy with a warm smile.

I’ve frequently mentioned the different difficulties we deal with at home and school to clients, to show them I can have some understanding of what they’re going through with their own children. In a recent case I had, I ended up being an expert witness of sorts for my client because the judge and the other attorney had no idea what Asperger’s Syndrome was or what it meant for a child. By explaining what our family went through–playing that “A” card–I was able to help my client successfully conclude his case.

And sometimes you just drop it to make the complaining person feel like a heel. (We’ll add up the karma points later.)

Of course there’s the big one:  Disney World. By playing the “A” card at a Disney property, you get a magic pass that allows your whole family to go to the Fast Pass lane for many of the most popular rides. How does this help?  Well, here’s one example: We went on the Big Thunder Mountain roller coaster ride, and our wait was as long as it took us to walk up to the gate. That was it. The next car came up, and we were allowed on. If we’d gone the regular route, we’d have had to wait an hour or more.

So is it wrong?

In this case, I think it’s not. The nature of the issues our children have is that if we’d had to wait an hour for the ride, our children would not have been able to have that experience at all.  We couldn’t have been patient that long without some sort of incident. On rides where it was clear it was only a 15-minute wait, we got in the regular line and took our turn.  That’s a life lesson kids need to learn. But if it was use the pass or miss the experience–we used the pass.

The changes we saw in the children as a result of being able to experience the Disney parks didn’t happen just in those five days, but continued to expand them (especially Little Miss) over the next several months. We are very grateful for the chance to let them participate, and glad we could use the “A” card to help them. Here the card was played for their benefit.

As for the way it’s been played in the election?  That one we’ll have to wait and see.