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. 🙂

Blogs: time vampires

Back in the day, I had a diary. (No, children, we did not carve words into stone tablets in those days. Really.) So my original understanding of a blog was that it was just like a diary. Except on the computer, and open to anyone to read.

In the past year, I’ve found that a blog is very different. A diary you write in, when you remember, and if you don’t, then it’s still there just as you left it, in the same condition and with the same level of investment.

A blog is a demanding child that needs constant attention to thrive, and threatens to distract you from any other meaningful necessity in your life. Once you make the initial investment based on your purpose in creating it, you have to justify that investment and keep tossing more fuel in to maintain, much less expand and grow.

I started this blog for several reasons, not the least of which was to leave the stone tablets behind. It’s the 21st century, after all! But I wanted to seriously pursue the business of writing, so I created what all TPTB were calling a “platform,” and also a space where people outside my own circle could read what I wrote. I now have a worldwide audience, based on the comments and emails I receive.  Cool, huh?

I also wanted to connect with others who have children with special issues, because as much as the professionals have to offer, sometimes hearing what whacky technique worked for another mom or dad is just the thing that will reach one of my kids.

I’m pleased that I’ve accomplished what I set out to do. At the same time, I struggle sometimes with the time commitment the blog requires. I try to write at least two posts a week (although some current thought is that’s too much), half an hour each for creation and perhaps more time for research, if I’m creating a well-rounded post with links and pictures for real educational value.

I’m delighted to receive comments, and I like to respond to those who’ve been kind enough to acknowledge my writing. Another 30-60 minutes a week. I return the favor by reading other’s blogs, particularly those in my blogroll, an eclectic batch of very interesting people and advice columns, and one just for plain fun and a creative break. Another hour a week.

To find out what other people are doing with their blogs, I study the WordPress Dashboard everyday, where people’s latest posts are listed on a rotating basis.  I’ve learned some interesting things there–not everyone on WordPress is American, so there’s a broad world view. Another 15 minutes a day.

But I want to grow the blog, so I venture off the WordPress safety net and out into the Interwebz. I belong to Blog Village, where you can list your blog in a little community that’s not quite so overwhelming. You have to sign in at the first of each month to keep your place there. Another 15 minutes a month, catching up on what’s new. I’ve promoted my writing with pages at Redroom, the Polka Dot Banner and Pennwriters. Each of those sites requires a certain amount of maintenance and interaction with the other members, probably an hour total a month. More would be better. Then there’s Linked In. And Myspace.

To reach a broader audience, I also seek out blog carnivals. This month, for example, I was featured in the Freedom and Privacy Carnival, the Carnival of Positive Thinking , the Carnival of Family Life, and the Fuel My Blog Carnival. Another hour or two in deciding which posts to enter, then reading through the lists to see where I fit best. The effort is worthwhile, because I come to the attention of a cross-section of people I would not have encountered otherwise; many come back to visit once they’ve been here.

The Wellsphere connection I’ve been very happy with. In addition to the honors I’ve received, I’ve been able to answer questions about autism, at the same time I’ve been able to find information for fibromyalgia and stress relief. But there goes another two hours a week.

Guest-blogging is wonderful, and I never turn down an opportunity.  This week, I’ve been invited to guest at Petit Fours and Hot Tamales, a romance writer/reader site, and that will appear Friday. Next week, I’ve been tapped for an entry at Gardening Nude, on community building.  These entries, because they’re more formal, tend to take a little longer, maybe an hour each.

With my job, and my family, and my writing, this is frankly all the time I can spare, and it’s really not enough. Other bloggers I know swear by Facebook, and insist you can’t get anywhere without being on Twitter. Networking is the way!! they wail as they are hauled off to the lunatic asylum or hospital muttering about pixels and keyboards. It’s true.  Networking is the most likely way that you will make those few connections that will set you where you want to be. I’m just moving in that direction at that old brontosaurus pace, slow and steady, hmm?

In the meantime, if you find something you like here, do me a favor. Network the old way, and tell a friend.Your kind act will free up some of my time so I can sit with my child, take a stress break, or maybe tell another story.

I’d appreciate it.

A Change is Gonna Come *

Some days I feel like we are falling into a deep hole with no way out, dealing with autism issues, the economic situation, material things that we want and don’t have. Fortunately, every so often some good hard kick in the pants comes along to short-circuit my self-pity.

The Cabana Boy and I saw the film Slumdog Millionaire last week, about a young man from the slums of Mumbai who gets a chance to play the Indian version of Who Wants to Be a Millionaire? I was primarily amazed this movie would actually come here, as we seldom get indie-type films in our little town, so we caught its first showing.

There it was, that kick in the pants.

The depiction of daily life in the Indian slums, where gangs roam the streets randomly killing women and children as police officers watch from their tabled card games, where children subsist on a tablespoon of food for a meal, where women wash the family clothing in filthy water, was stunning.

Children work all day collecting recyclables from huge piles of garbage that circle the poor rattletrap homes, and likely dine there as well. The poor live in huge mini-cities made of walls of rusty metal, full of little corridors and warrens tying them all together. People have nothing, not even much chance of escaping the poverty that has dragged them down for generations.

Mumbai is not an isolated case, of course. Much of the Third World is the same. Even countries of great wealth, places like Nigeria, where diamonds provide the country with astounding income, don’t put that money back into building up its impoverished population.

Nor does the United States, for that matter.  There are still children who go to bed hungry each night, which has long-term effects that surpass growling bellies, people without access to health care and decent housing. (If we can’t even feed and house them, how will we ever be able to get them educated in a way that meets world demands, considering where the U.S. stands?

As much as my children don’t have when compared to other children in our mostly Caucasian, middle-class community, they have riches and opportunities well beyond millions of other children in this world we share.

But I’m hopeful in the era of this new American administration, that the government will spend less time carrying out legacy wars and more time looking at the state of the world, both economically and ecologically. We have the chance to become once again the light of the world, to steer those who follow us in the direction of saving the people and the planet, not in its destruction.

The groundswell of support and energy that lifted Obama to office, however, needs to continue and build. Every person needs to commit themselves to changing business as usual and to make a difference with their own hands. It could be something as small as using Goodsearch for internet queries, giving money to charities without spending a penny of your own money, or other click-to-donate sites.

There are huge campaigns with fancy advertising like the One campaign and the Hunger Site. If you prefer hands-on, there’s Habitat for Humanity and Make a Difference Day in every community. Sign up online for Obama-endorsed USA Service.org. Volunteer to protect battered women, to save endangered species, to elect good candidates.  Go green at your home. Teach your children the value of helping others and conservation of resources.

Can we eradicate the kind of poverty we saw in Slumdog Millionaire in our lifetime? I’m sure it’s wishful thinking. But if you had asked me, four years ago, if we could have elected a candidate of color to the White House in 2008 I wouldn’t have believed that, either. Obama’s attitude of “Yes, we can!” is the key. We must try.  We must achieve. Every step must be a step forward. We accept nothing less in our children’s therapy; how can we accept less for the other children of the world?

Margaret Mead, in her oft-quoted remark, does say it best: “Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.

Do you care?  Let’s change the world.

*With acknowledgement to Sam Cooke and his legendary song.

Quitting while you’re ahead

When we first start to practice law, many attorneys dabble in several areas to see what field we’d like to pursue.  At law school, I focused on employment law–unions, at-will, even interned at the Equal Employment Opportunity Commission in Miami. But for one reason and another, I didn’t get a job in that field, so I went back to Homestead and opened my own practice, doing a bit of this and a bit of that.

One field I tried very briefly was criminal defense of alcohol-related offenses, taking two cases in succession, both while I was pregnant with K. (Which I thinks explains my insanity in doing it at all–hormones.)

The first was an adorable old Australian man named Tom, who charmed me with his accent right off, and convinced me I could handle his case. Even though, as I came to find out, he had four prior DUIs. And even more to the point, when I got the police report, I found that he had crashed his car into a concrete abutment, and when the officer came up to the car, my client’s direct quote was, “I’m as drunk as a G*ddamed monkey.”

Fabulous. Apparently he had been, because he hadn’t remembered to mention that to me.

So I hoped that because of his age, and his health, I could at least ameliorate some sort of sentence for him, because he was a really nice guy.

But I won.

In the busy Miami courts, the state gets two chances to proceed. If the officer doesn’t show up for two consecutive hearings, the case is dismissed. He didn’t. Voila! I had pulled a rabbit out of the proverbial hat (or substitute a more personal euphemism), and he walked. He was so grateful he brought us the most delicious amaretto cake I’ve ever had. We corresponded for a number of years after we moved north, and he stayed out of trouble thereafter, having realized he’d received a real gift that day.

The second one came after a call late one night from my doctor, who was also a friend. His son had been arrested and charged with DUI, could I help him out, etc.? Fresh from my consummate victory, I assured him I could, and went to work.

This case was more interesting in that this man had Morphan’s Syndrome, a condition that affects the spine and the ability to move, making it nearly impossible for him to walk a straight line.  No wonder he failed the test! I gathered up the appropriate doctor’s deposition demonstrating this condition, and also had a photographer friend take pictures of the scene, which showed that the officer was mistaken on a number of details in his report–why not this one?

We’d gone to one hearing where the officer hadn’t showed up, and I was so excited that morning of Sept. 27, 1988, when we went downtown to court, that I’d roll the dice again and win.  But no such luck.  The state attorney was conferring with a number of police when I checked in, including my officer. Bummer. But that was okay, I was prepared.

Until the first labor pain set in.

I wasn’t officially due until the next week, but apparently K thought it was time. (She always has been a little contrary like that.) The room was packed, probably 100+ defendants on the call of the list, so we waited our turn, but over that hour, it became clear it was not just Braxton-Hicks, or general kicking discomfort, it was the real thing.

When the judge called us forward, I caught her look at my bulging stomach before she asked the SA if she was ready to proceed. She said she was. The judge turned to me and asked the same.

“I think I’m going to have to ask for a continuance,” I finally said.

“Because?”

“Because I’m in labor.” Another contraction came about then and I leaned over the table a moment. There was a silence and then a general hubbub broke out.

“Go on!” the judge said, waving me away from the bench. “Get out of here!” She had the bailiff clear a path for me, and my client brought my briefcase as we went down the long aisle, several defendants taking the chance to ask if I could be their lawyer for the day so they could have a continuance too.

I drove straight to the hospital, 25 miles home. (Yes, I know, that’s crazy. But my doctor and husband were there. What was I going to do?) They sent me home to wait awhile, and sure enough, by the next morning, we had a 9 lb. 1 oz. bouncing baby girl.

The case was rescheduled, of course, without further continuances. I presented my evidence, and the officer presented his, and the judge, not quite sure, withheld a finding of DUI and just sentenced my client to some alcohol education classes. So I considered it a win, and hung up my DUI gloves, with a record of 2-0.

Besides, I’m pretty sure that “In-labor” defense isn’t going to work again. Ever.

A wandering mind

One point of wonder for me about the United States is that our country has such a variety of climates and geography, all available inside our borders. Whether you prefer living by the seaside, at the foot of mile-high mountains, among the prairie dogs or amid a skyscraper jungle, most people eventually gravitate to the area of country where they will be comfortable.

I’ve been fortunate in that I’ve lived in many of these areas. We spent the better part of a year in Missoula, Montana, with the Rockies and Glacier National Park as our backyard. We had more than a decade in south Florida, with the Keys and the Everglades to explore. Pennsylvania has many points of interest as well, being a few hours from Niagara Falls and several big cities with diverse populations.

We’ve visited so many more, and I’ve always had a hankering to return to the Taos, New Mexico area. Oregon and northern California were also appealing. New Orleans was fascinating (we visited pre-Katrina), but even then I’m not sure we would have wanted to relocate there. The saying about those living in Florida getting “sand in their shoes”–i.e., always needing to return– is one that rings true for me also.

How do you decide?

Work obviously necessitates making sure you can be employed in your particular field, at least if you have a family to take care of. I must confess,  as we approach 20 years here in the same place, I’m envious of those with no real estate, no ties, who can pack all they own in their car and head out for new adventures with just their hopeful attitude in their pockets!

Health concerns are next on the list. The Cabana Boy reminds me often that fibromyalgia sufferers would do better out of the cold and snow. On the other hand, Pennsylvania has outstanding coverage for kids on the spectrum, and that’s not something to drop lightly.

With economics at the forefront of everyone’s outlook, that’s something else to factor in. My work is more likely to grow here; the Cabana Boy could easily find work in a hundred other places. But we’re both working here. Sadly, that’s more than a lot of folks can say. B tells us that in a recent class of her environmental ed students, 40 percent of those kids’ parents got laid off in the same week. It’s not something we can take for granted any more.

Neither are basic necessities like fresh, clean water. I’ve become sensitized to this subject lately, and I find we are living in one of the few areas in the country–maybe the world–where we are pretty much guaranteed fresh water year-round. (Probably because of all this stupid SNOW. But it serves a purpose besides making us miserable.)

So we’re here now. And we’re doing okay. We’ve got our eyes open for possibilities, though. What other kinds of fascinating places are out there yet for us to explore?  Let us know!

***

And here’s a shout-out to Janie over at the Carnival of Family Life–thanks for featuring my post!

Heartbeats in tandem

It’s that little catch at the end of the spoken phrase, that choked-up sound that means ‘I’m trying to be all grown-up about things but aren’t you still my mommy? Can’t you fix it and make it better?” Rips your heart out.

This time, it was yesterday, when daughter #2 called. When the phone rang, I was expecting her to say her bus coming back from Toronto was on time and I could pick her up in Erie in just about an hour.

As my fellow writer Rudyard Kipling says, “not so, but far otherwise.”

Instead, she announced that incipient bad weather had scared the Greyhound lines into cancelling all the buses leaving Buffalo, meaning she would have to stay in the bus station some 36 hours till the next ones went out, IF they went out then. All she wanted was to be home safe. But she was stuck.

And there it was, that little catch.

Ripped my heart out. It always does.

Even though most of  my girls have been grown and out of the house for years, when they are injured, when they’ve been hurt by someone, when they are desperate in need of money or their car just quit, or they need doctoring or just a good hug, they call mom. Sometimes  just when they need key lime juice. (But there’s less tears then.)

Yesterday, like always, I did whatever was in my power to make it right. While listening is sometimes enough, leaving a young woman alone in a bus station overnight is not my idea of proper parenting. So I looked outside, studied the interactive map at weather.com, and discovered the Buffalo-Erie corridor was pretty clear. No reason she shouldn’t be picked up.

Of course, the Cabana Boy knows I absolutely hate driving in snow, and with a five hour round-trip staring me in the face, he decides he’s driving. Not because I can’t, but because he’d have too many hours’ repair work on shredded nerves and rock-hard muscles when I got back. And Saturday is his World of Warcraft night, for heaven’s sake.  So we couldn’t risk that.

Therefore, we made an adventure of it and drove up, with the whole fam.  The kids got a Burger King meal and they were tickled. B got a ride back. The Cabana Boy was home in time to don his trusty wizard suit, and I survived on several muscle relaxers and rest area coffee, glad when we pulled in safe and sound. All’s well that ends well.

Until the phone rings again. And there’s just that little noise that lets me know how much a mother’s help is needed.

Charlotte Gray said,”Children and mothers never truly part – Bound in the beating of each other’s heart.”

Isn’t it great?

****

Come by Anna’s Carnival of Positive Thinking and read up on some good ideas to help those working on rebuilding their lives, just in time for the new year.

A strange, but appropriate, hero

The Captain has become quite enamored of Forrest Gump.

He read the book, then watched the movie, and even had his hair cut the same way as Forrest this weekend. (Just what I would have picked for a seventh-grader. Just.)

Of course, as always, he’s dropping bits of the script: “Stupid is as stupid does, sir!” “From that day on, if I was ever going somewhere, I was running!”  “My name’s Forrest, Forrest Gump.” “When I got tired, I slept. When I got hungry, I ate. When I had to go, you know, I went.”

Actually, between the two boys, the fact he just “went” and the fact that Forrest got shot “in the butt-tocks” and mooned LBJ were just the best parts ever.

Part of me is wishing like hell he’d picked a different new hero. But another part of me is cheering him on. After all, though Forrest has little to no social skills (though he is very polite), though he takes everything people say literally, though he does things his way, sometimes very impulsively, though he doesn’t understand nuances and subtext and many other things– he succeeds!

He survives Vietnam. He becomes a millionaire in the shrimp business. He finds love, has a child, travels the world playing Ping Pong, has a beautiful house and all the things we expect to have.

Why wouldn’t the Captain relate to such a person?

I remember reading several columns back when we first got his diagnosis about the Star Trek character Data, an android, and how many people with Asperger’s related to his constant struggle to understand the social side of humans. He tried to learn humor by programming himself to tell jokes–but he didn’t understand why they were funny. He found it difficult to relate to members of the opposite sex. He tried to teach himself small talk, as it was something that was expected of humans, and they seemed to do so naturally.

Here’s an example, from the Internet Movie Database:

Lt. Commander Data: [voice-over] Friendly insults and jibes – another form of human speech that I am attempting to master. In this case with the help of Commander Geordi La Forge.
[he walks into the hairdresser salon where La Forge is having his hair trimmed]
Lt. Commander Data: [voice-over] I consider Geordi my best friend.
Lt. Commander Geordi La Forge: Here for a trim?
Lt. Commander Data: My hair does not require trimming, you lunkhead.
Lt. Commander Geordi La Forge: What?
Lt. Commander Data: My hair does not require trimming…
Lt. Commander Geordi La Forge: Lunkhead?
Lt. Commander Data: I am experimenting with friendly jibes and insults. It was not meant as a serious disparagement.
Lt. Commander Geordi La Forge: Well – just don’t try it on the captain.

Later examples of the same sort of character are Odo, on Deep Space Nine, and the holographic Doctor, on Star Trek:Voyager. Both were outsiders who attempted to fit in with the humans around them, though ill-equipped to do so. I find these characters more like our children than the officially Asperger’s diagnosed Jerry Espenson on Boston Legal.

Do I want the Captain to believe that despite the drawbacks of his diagnosis, he can fully succeed, even excel, in life?  Of course.  So bring it on, Forrest.  Just remember that smart is as smart does, as well.