Confessions of a nerd

Let me be up front about this: I’m more likely a Trekker than a Warsie.

That being said, we experienced a little bit of heaven this week as we first got to bring home the latest incarnation of Star Trek, a movie that goes back, long ago, to a galaxy…no wait. It’s still our galaxy. And James Kirk is a babe. And Spock is a babe. And Karl Urban is AWESOME as McCoy.

Then we finished off the month with a once-in-a-lifetime event: Star Wars in Concert. John Williams’ music is brilliant–and to hear the story narrated by Anthony Daniels in person, from the real beginning this time!–live with an orchestra. Little Miss met Princess Leia, while Dr. Doo-Bee-Do got to have the music as loud as he usually likes it. I was interested to see that there were a number of kids, like Little Miss, who brought headphones to deal with sensory issues. Pittsburgh being an autism center, though, I guess it’s not surprising.

The concert was breath-taking, every minute of it, even the Dark Side encore. Here’s a little taste:

Back off track..as usual

I spent some time reviewing this blog the other day, and it reminded me that we started out talking about autism. A couple of years ago, the topic was a huge part of our daily lives, with all the therapies and educational issues and…so much. So many questions. So many answers, not many of which were applicable.

We’d discontinued our last services back in April, and even that had only been for a couple of hours of behavioral consultant a week, just someone keeping us abreast of new exercises to spur Little Miss on in her language development. Her ADD meds have both helped her conversation, her involvement in class, and we’re even starting to see flashes of intuitive and logical deduction. Hurrah.

Ditto Boy has grown away from his brother, so the name may no longer be appropriate; more likely would be Dr. Doo-Be-Do, because his ADD drives him to be constantly singing half under his breath “doo-doo-doo-doo0-doo-doo…” and so on for 20 minutes at a time. Drives me nuts. Keeps him calm. So be it. He’s pursuing some auditory processing therapy at the hospital, but that’s about it. The girls still fight over him. It’s all good.

The first two weeks of school seemed to go swimmingly. Everyone had what they needed to start, new shoes, new teachers, and smiles all around. We should have known doom was about to descend.

A week ago Friday we finally get a call from the new eighth-grade autistic itinerant support teacher. The Captain is totally acting out. Meltdowns. Disgusting body odor. Disgusting body noises and hygiene. Eating boogers, for heaven’s sake. Not doing his class work. Not doing his homework. Disturbing the conduct of every single class. Not only are they posting him the aide we specifically denied in his IEP, now they want us to get him a TSS full time AND take him for a psych eval. They’re throwing around dozens of acronyms–ADD, HD, ODD, you name it.

What?

Every day he’s come home telling us he had a great day.

Man.

Of course, the first thing we did was address it with him and go back to the same routine that we’ve done since third grade: the natural consequences of your behavior are since you are distracted from what’s required of you by tv, movies, books, Wii, etc., then you will not have these things. You can earn them back into your life by controlling your behavior. Because we’ve seen you do it. We know you can. You are a big boy and you do not need a babysitter within smacking distance all day during your school day. (And you sure won’t have one, when you graduate and have to get a job in 4 years). All the time, it feels like we’re the ones being punished.

So back to the autism/Asperger’s grind.  Managed to get him the psych eval and they’re starting him on ADD meds too (hopefully without the head-jerking tics this time) hoping to get him back on task. So I’m the only one not on speed. At my age, I’m slowing down enough that hopefully we’ll all meet in the middle.

Let’s hope that quick action has derailed the misbehavior train and we can move ahead. But there were several months where, besides a few usual adjustments for sensory issues, etc., we didn’t even have to think about the word autism. Not a cure, mind you, but an adjustment to accept the children as they are, which on the whole, isn’t thoroughly different from the variations of the neurotypical child population. There are many shades in a rainbow, and aquamarine and cranberry aren’t any less valuable than blue and red–and might just be more interesting in the long run.

Nirvana: different strokes for different folks

The end of the week spelled happiness for our household, but in such a variety of ways:

  • The Captain got to stare at cartoons for a whole morning when I was in court and couldn’t monitor.
  • The Cabana Boy continued work on a freelance project for another law office in town, creating an office computer network from the bare walls up.
  • Ditto Boy got his yearly fix of cotton candy and the Ride-a-Rama at this week’s county fair.
  • Little Miss got five rides on the carousel.
Heaven in 360 degrees

Heaven in 360 degrees

Seriously, for a child with sensory integration issues, not only does it spin, it goes up and down, and goes fast and forward at the same time? Her face just radiates bliss.

Me? I guess my part is tonight, when I have a face to face meeting with an editor who’s reviewing my latest manuscript. She’s already done a wonderful critique of another piece of my writing in connection with a workshop, so I’m really looking forward to it.

Something for everyone. What else can you ask?

This week I have a guest blog over at Imperfect Women . I certainly qualify–c’mon down and see what else these ladies have to offer!

On the other hand…

Little Miss remembered all week it was her birthday today; anticipating it, as well as the activities that might happen. (First time.)

She remembered and could articulate the story of her birthday last year, when we went to Perkins and they brought her a brownie with a candle and sang to her– the first year she could tolerate that kind of noise. She remembers her brother’s birthday is next week, and reminded him; two years ago she couldn’t follow a calendar.

At the ripe old age of 9, she decided after reading a magazine ad, that she would like to go to Build-a-Bear; she wanted the High School Musical bear that just came out. (How age-appropriate is that?!) She reminded me that after you buy the bear you can go to http://www.buildabear.com and play games. She even cut out the coupon in the magazine to save five bucks.

We went to the mall and got exactly what she wanted. She waited patiently in line and chatted amiably with some toddlers while waiting, even with the noise of the fluffer fan right in her ear. She chose exactly the outfit she wanted and didn’t make a spectacle in the store, running here and there. She spoke up and answered the sales people’s questions and typed the information for her own bear’s birth certificate. (It was all new to me–never did the Build A Bear thing).

After we left there, we went to see if Burlington had school clothes on clearance yet–they didn’t– but she prowled through the jewelry, calling my attention to pretty pieces and then helped me search through the purses to see if they had an organizer style. We found her a little halter dress and sequined sandals marked down, and she looked fabulous! She walked up and down the terrazzo like the models we’d watched on Project Runway last week.

When we found out the restaurant we went to had discontinued the birthday dessert surprise they had last year, there were no tears, no meltdown, and she patiently waited for us to pick up a cake on the way home. As her brothers each picked out a book at Borders, she accepted my explanation that she already had a whole load of new things and didn’t need a book too. No tears.

All the way home she chattered about assorted topics, this girl who doesn’t talk. We learned about the phases of the moon, the songs on the CD player, all about her bear…and even how they make chocolate milk. “They take the cows, and give them chocolate syrup. Then the cows shake themselves all up, and then everyone is happy, like chocolate milk.”

So it was an evening, other than a few language hitches, that she could have passed for neurotypical. Her emotional development seems to be in an expansive period. She had a great birthday, the more so because she remembers her past and can anticipate her future at last. She has a bear to cuddle and more memories to cherish. All I have to do is dwell less on the negative and more on the positive– and we’re all happy…like chocolate milk.

This little light of mine

This week, I got an email from my mother-in-law, where my sister-in-law forwarded to HER this link. She thought it would be useful, apparently, because it was about Autism.

Now I appreciate the thought. But at this stage of the game, that article is pretty much useless to us. My son was diagnosed five years ago, my daughter, four. We’ve been through occupational therapy, physical therapy, speech therapy, hippotherapy, aquatherapy, TSS, BSC and autism support classes. We’re now looking at new therapies: music, art and mobile. We eat special mineral-packed vitamins daily and bathe in epsom salts regularly to detox. We make our own playdough with strong scent and textures to work on lingering sensory issues. We never go to the restroom in Panera; the acoustics echo. And the prime no-no of all time: self-flushing restrooms. Little Miss will hold it all day rather than drown in that overload of sound.

I’m far from being an expert on autism, of course, so I do look at articles people forward me, or books they recommend, and most times I manage to find something of use. I don’t know why it surprises me so much that people have no idea what we’re dealing with, even with the multitude of stories out there now on the issue. They’ve seen Rain Man, perhaps. (Not even close. Well, not close to the Rain Man behavior. This particular scene…maybe.) They’ve seen Amanda Baggs’ YouTube video. (Also not close, but still thought- provoking.) Lots of people think of us now whenever they run across something bearing the A-word, and by passing on what they find, they believe they help us. But they have no idea.

Our daily lives are steeped in nuance and prediction. Which child is riding in the car determines whether we can have the bass on in the stereo. Which child is in the kitchen determines whether food is being filched from the pantry. Which child has a substitute teacher predicts whether there will be a meltdown…or not. Which child we’re giving directions depends on how detailed they can be, at what level of language, and how many times we have to repeat them to get past the ADD. We have to know. Every minute, every day.

This particular sister-in-law is currently stated in our wills to be custodian of our children should anything happen to us. But she clearly has no idea what these children are like. She and my mother-in-law live in the same town in South Carolina. She has two sweet chubby-cheeked little girls who show no traces of the family’s genetic autism streak, who visit Memaw (the southern word for grandmother, apparently) every week and are the picture-perfect image of what grandchildren should be. If she ever gets our children, she’ll have to start from the beginning, and I think she could. But I wish she knew now. Just in case.

If people want to help in a meaningful way beyond sending the latest CNN headline, that would be great! Invite our kids over to play with yours so they can practice the social skills we drill into them. Have the kids for a weekend to give us respite from our constant hypervigilance, because we need to recharge, too. Learn about the therapies we’re using and come participate with the professionals. Offer to brainstorm with us for IEP meetings. Ask what we need and be willing to carry through. We’ll be grateful.

Albert Schweitzer said, “Sometimes our light goes out, but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.” Parents need support, because raising children of any sort is a tough job. Raising these kids can be even harder because of the specialization of the spectrum. When you step up to help rekindle our flickering energy, find out whether you should bring a match, a lighter or a flame-thrower. It will make a world of difference.

It’s how you play the game

Saturday night, our family went bowling.

Unremarkable, I’m sure in hundreds of towns across the country. Heck, maybe even around the world. We did go after 9:00, which is normally bedtime, so it was unusual for us. At that time of day, the bowling alley hosts “extreme bowling,” a sensual feast of rock music, flashing disco lights in the dark, with horrendous bright day-glo planets pasted everywhere. Probably 200 men, women and children were in the building, laughing, yelling, drinking, smoking and bowling.

I explained to the harried woman at the desk that we had special children and convinced her to put up the gutter barriers. (I was hoping at least that way I could break 100. The kids are fine.) Everyone got their shoes and proceeded into the madness.

Little Miss got to be first. I’m observing her carefully this whole time, because three years ago in a scene like this, she would have been under the chairs in a fetal position, hands tight on her ears. I know, because she did this at the Disney race car special effects show. Other parents stared. She peeked out every once in awhile to check the action, but she was fine there. No meltdown, no tears, just pained tolerance for her silly NT family.

Saturday, though, she thrilled to toss her ball down the lane, jumped up and down when she scored, came back, smiling, to high-five everyone, and insisted between turns that both Papa and I dance to the music with her. She paid attention to her brothers’ efforts and applauded them, high-fived them as well. When I tried to sneak in a math lesson, asking her who had the biggest score, she just gave me a look like “It’s so not a school day.”

Captain O., of course was strutting his Aspielicious self, interrupting most attempts by others to bowl with, “Did you see MY score?” But he had a good time. I tried to show him the somewhat proper form for walking to release the ball–he preferred a stutter step to the edge of the lane and the dropped bomb that crashes onto the wood. Oddly he scored higher like that. Good enough for me.

Ditto Boy is such a drama queen! He would get his ball, back up to the edge and run some 20 baby steps to the edge of the lane to fling the ball with enough force, I swear he should have been propelled halfway down the lane with it. I could see my husband wincing as he thought the same thing. After releasing the ball, D.B. would skitter back and watch, then prostrate himself in agony or spring up and down in glee, depending. Where’s those ABC Sports guys when you need them?

But he did roll three strikes in a row. Awesome. We’ve got to keep an eye on that boy.

All in all, a satisfying outing, followed with ice cream sundaes at Perkins. Watching them interacting like any other batch of siblings in the place, I considered my pathetic bowling score, still lower than everyone else’s. But, somehow, I feel like I won.

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