In a Sky Full of Stars
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Lately I’ve been thinking a lot about the stars. Maybe it’s because the crowd funding campaign that I implemented for the Eastbay Astronomical Society (EAS) recently came to a successful conclusion. We raised more than $26,000 for Phase I of the Zeiss Universarium planetarium projector restoration—woohoo for EAS and me!—and I’m hopeful we will obtain the necessary funds to see the project through to completion. It’s an exciting time for Bay Area stargazers. It’s an exciting time for me: the EAS campaign, the book release in June, another book in the works, a redecorated house….

Whatever the reason, I’ve been thinking about the stars. Staring up at the sky on crisp, cold nights while my daughter Katie swings. Studying the constellations I learned as a child and reflecting on life, my goals, and where I want to go in the time I have left.

I’ve been thinking how every star is individual and unique—just like snowflakes. And people. Pondering how, in a sky full of stars, only a few blaze trials to points unknown. Only a few intrepid souls learn to fly.

It’s taken five decades of hard work, but I am one of the lucky ones. Any day now I feel I will soar.

I didn’t set out to do this. In fact, my upbringing taught me to play it safe, to shine bright in my designated place. But somewhere in the strange and magical journey of my messy, unplanned life, I shed that rule, shed it like a butterfly leaving its cramped and disintegrating cocoon—unsure what to do with the wings I’d grown.

5f18feb5ac87c43171bf2b63bce201c3Now, years later, I know that I need to fly so that I can show Katie how. I need to pull her up when her fragile wings fail. I could say I’m doing it for her, and that would be partly true, but mostly I am doing it for me, selfish me. Because why would anyone stick to one place in a universe as large as ours? Why not blaze a trail—or two—or three?

Why not I ask?

It took me years to understand and accept, but for me, sticking to one place, one interest, one job is as impossible as asking a star not to shine. I will always be juggling too many books, projects, and passions. I cannot do otherwise. This is simply not who I am.

I do not begrudge you if you desire to shine bright in your designated place. In fact, on some days, I envy the simplicity of such a life. Just please, please don’t ask me to do the same—because I can’t. I am hard-wired to explore, discover, create. I need variety, and challenge, and change. I am a blazer of trails. A traveler. A starter of things. A leader. After nearly 52 years on this planet, I finally know that I am built to soar.

I could say I need to do it for Katie, but really, I need it for me.

Until next time,
Cynthia

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IEP Woes
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broken-pencil-schools-jpg_021534It’s January, so that means it’s IEP month. (IEPs are individualized education plans for children with special needs.) Actually, this time around, the IEP madness started in December 2015. It’s a triennial year, so my daughter was subjected to lots of testing throughout the fall. Testing with dubious results. When I’m told my bright, sensory-challenged child has an IQ of 51 and a completely normal vestibular system, I know something is very, very wrong.

Katie and I have a rather tortured history with our home school district. If you aren’t familiar with this tale, you can read about Round #2 here: Sometimes the Truth is Stranger Than Fiction, Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8, Part 9, and Part 10. A summary of Round #1 is included in there somewhere. I think it’s safe to say that things have never worked out well for us in this district.

If you don’t want to read all that, here it is in a nutshell: the district can’t (or won’t) meet Katie’s sensory needs and then they get behavior the classroom staff can’t deal with. They unintentionally reinforce the very behavior they want to stop and the situation spirals out of control. Multiple suspensions occur and then they ask (more like demand) that I keep her home. Each time they have violated federal law. Each time I’ve had to contact Community Alliance for Special Education (CASE), a public interest law firm. The advocates mutter how they hate schlepping to Livermore to deal with the same old issue. Katie transfers mid-year to another school district. Her sensory needs are met and the problem behaviors disappear.

Stack of papers2The story didn’t change much this time around. Things seemed to start off well, but when the district lost Katie’s 1:1 aide to a higher paying district, everything fell apart. First Katie had a sub (excuse me, a “long-term sub”), then two well-meaning gals with limited autism experience. They soon grew to fear Katie, who was thrilled to be calling the shots in the chaotic classroom. Despite this, the occupational therapist insisted she wanted to keep Katie’s sensory input “fluid.” This hasn’t worked in eight years and is a large part of the reason Katie spent five of the last six years in two other school districts. But the expert insisted.

This, of course, is the same expert who wrote a report stating that Katie’s out-of-whack vestibular system was “Typical.”

Katie came home from school overstimulated virtually every day. I complained. I wrote emails and letters. Nothing much changed. They tried weighted lap blankets and neck rolls. They tried massage. They spun her in an office chair until she broke the behaviorist’s iPhone. They played 80s dance music. Gave her longer “relaxation breaks.” Everything but what she needed.

The sub quit and new kids were added to the classroom, so the district finally hired new aides. Because they had no experience with autism (or any other disability, for that matter) someone made the decision to switch Katie’s 1:1 aide every period “to avoid burn out.” Interacting with a brand new person every hour is pretty much the definition of torture for someone on the spectrum, especially when they are already overstimulated. Katie would come home from school and fall apart.

It took Katie getting suspended two weeks ago and me telling the Vice-Principal (a lovely man who I suspect serves as Katie’s unofficial aide most days) that I’d be calling CASE to reopen our file for Katie to finally get three structured sensory breaks per day. She also finally has regular access to the swing she can see from her classroom.

I fear, however, this may be too little, too late.

Until next time,
Cynthia

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Pre-Sales Period Set for Across An Aqueous Moon
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logoFinishing Line Press will offer advance sales of my poetry collection, Across An Aqueous Moon: Travels in Autism, from February 29 to April 29, 2016. You can order the book from the Finishing Line Press website or through me. More details on how this works will follow.

My goal is to sell at least 110 copies, as the pre-sale period determines the size of the print run (as well as how much I get paid). The book is scheduled to be released on June 24, 2016.

I will post updates as I know more.

Until next time,
Cynthia

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A Fresh Start, Part 3
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ChecklistNate and I continued to play with furniture placement in the family room while I researched televisions. We moved the sofa along the long wall that had once housed the green faux-antique armoire. I liked it there, flanked with the end tables made from reclaimed barn wood, but where could we place the TV?

I had assumed that the TV would hang on the wall where the armoire had been. Balancing it on a low-slung piece of furniture didn’t seem like a good option with a rowdy dog and cat in the house, not to mention an autistic kid who still sometimes resorted to throwing things when frustrated.

No, Nate insisted. It belongs on the fireplace. The gray stone will help it blend in.

I said it couldn’t be done. He said people did it every day.

“Well, I can’t.”

“No, but I can.”

“You can?”

“Of course.”

My ex-husband used to claim he could do stuff that really, when all was said and done, he could not do. Or at least could not do reasonably well. Or at all. But Nate is teaching me, again and again, that he is different.

“Prove it,” I said.

He smiled and set to work.

I’d purchased a 50-inch full HD, smart TV that was waiting in the living room, still in its box. With the gauntlet thrown down, I figured I’d let Nate try his fireplace install. If it failed, we could always resort to Plan B. Because how could he possibly find a joist on a wall of fake stone?

“You underestimate me,” Nate said.

Apparently I did. But not for the reasons I thought.

Things didn’t go as planned. Nate never found a joist, probably because there aren’t any to find beneath the faux stone veneer. So he quietly developed a new plan, one that didn’t involve blaming me or yelling. (Another pleasant change from my ex.) It took several days, some plywood, and a lot of really long screws, but in the end, the TV was hung on the fireplace. He even painted the plywood to match the stone, which I thought was a nice touch.

Nate didn’t say I told you so. Despite that, I did the grown-up thing and told him he was right. It was possible to hang a TV on a fake stone fireplace.

Nate smiled and helped me pick new shades for my grandmother’s vintage Stiffel lamps. We had to go to five stores, but he never whined or complained. When we finally found ones that worked, they were more than I wanted to spend. So Nate bought them (“a gift” he said), and now whenever I see those elegant lamps flanking the sofa, I smile because I know wherever my grandmother is, she’s happy to see them in use, living a second life.

Once my sofa was in place, it was easy to figure out where Nate’s chairs and the settee belonged. We have space for a large memory foam “lounger” for Katie. Max has a bed hidden in the corner behind the settee. Delta has a basket of chew toys. Nate and I are debating what to hang over the sofa and we still need to hook up the television and stereo, but already the room feels comfortable.

For the first time in a long time, it feels like home.

Until next time,
Cynthia

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A Fresh Start, Part 2
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ChecklistAfter a week of clearing out unwanted and unused junk from my home, I was ready to tackle Phase 2: cleaning and rearranging what was left. We started with the family room, where much of the changes were taking place.

I had emptied the small oak bookcases that flanked the fireplace to replace them with taller bookcases I had bought for my home office but ended up not using. For seven years they had resided in the garage, the cases painted crisp white but the shelves unstained. Next to the floor-to-ceiling gray stone fireplace, they looked as if they had been made for the space. My boyfriend Nate said a few strips of moulding would make them look truly built-in.

Anxious to get the books and accessories off the floor and kitchen table, I dusted everything (no small task) and arranged it on the unstained shelves, saving that project for another (warmer) day. Already the room looked brighter and fresher.

It took three passes with the carpet cleaner and a fair bit of crawling around with spot remover, but finally the off-white carpet was once again off-white. Except for the bright orange stain that had been concealed by the coffee table. I had no idea it was there.

I was scrubbing the stain for the fourth time when I muttered, “I wish I knew what this was.”

I wasn’t expecting my autistic daughter to answer, but she said, “I do.”

“You do?” I wasn’t sure I believed this. Katie is still somewhat unreliable when answering questions.

“Yes,” she said solemnly.

“What is it?”

“Vomit.” There wasn’t a hint of hesitation in her answer.

Orange puke in the family room? I tried to think of a likely scenario but couldn’t.

“It’s vomit,” Katie said and returned to her iPad.

I’m still not sure what to make of this exchange, but why would she lie? Like most kids on the spectrum, Katie rarely, if ever, lies. It simply doesn’t occur to her to do so—unless she is sneaking candy she knows she isn’t supposed to eat. And assuming it IS vomit, whose is it? Katie or the dog’s? Because either is possible.

Regardless of the stain’s mysterious origins, I only succeeded in lightening it to a deep peach, so Nate and I covered it with an area rug cast off by a friend on the move. The rug beautifully coordinates with the curtains and anchors the new seating area.

With the armoire gone, I played with furniture placement. Moving the sofa away from the window brightened the whole room. I had purchased the sofa after my divorce, and thanks to its microfiber fabric, it was still is great shape. But I couldn’t decide if I wanted to float it in the long, narrow room facing the fireplace. And what new furniture did I want? I was determined to only purchase items that 1) I loved and 2) fit my lifestyle (i.e., were low maintenance and indestructible). I also wanted to replace Katie’s worn out plaid chair with something she had long desired: a bean bag chair. This room was going to work for the life I had, not the one I had planned.

Nate offered some chairs he had in storage. “They need work,” he said, “but I think you might like them.”

Nate used to restore furniture for a living, so I knew who would fix them when the time came.

The chairs and matching settee were simple and heavy, with curved arms and legs. The mahogany finish was in good shape. What needed work was the upholstery. Even so, I loved them. They were comfortable despite the sagging springs.

When I told Nate they could stay, he said, “Are you sure? I don’t want to force them on you.” This is a statement my ex-husband never uttered.

“You aren’t,” I said. “I love them.”

He sighed with relief, and I knew I had passed some sort of test. These chairs were important to him. “I’d planned leather seats, but I’m not sure that’s a good idea here.”

“No,” I said. “Too risky with cats.”

“We’ll figure something out. I’m glad to get them out of storage. They fit here.”

I wasn’t sure if we were discussing the chairs or something else. But I knew, like most things, it would become clearer with time.

Until next time,
Cynthia

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A Fresh Start, Part 1
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ChecklistThere’s tremendous chaos in my home of late, but it’s chaos of a good sort. My parents gave me and each of my siblings a generous check for Christmas, and I decided to use the money to buy a new television. The set I’d been using pre-dated my marriage. I’m serious. I recall using the tax refund I received in the spring of 1994 to purchase it: a large 36-inch Mitsubishi TV. It was my first non-apartment-sized television set, and I was terribly pleased with my purchase.

Later, Michael and I purchased a green faux-antique armoire to house the bulky TV and our growing collection of audio/video components. It was very state-of-art for 1995. Twenty years later, however, it was undeniably old-school technology.

Amazingly, the television was still working, but just barely. When Dad came over to watch Katie while Mom and I took tai chi class, he had to “warm it up” for twenty minutes before loading a DVD. I couldn’t remember when I had last used the VCR or the dual tape deck, let alone the auto rewinder for the VHS tapes that had long ago been donated to charity. It was time, well past time, for an upgrade.

But before I could buy a flat-screen TV, I needed to get rid of the old one—which Dad and I could barely budge, let along lift—plus a few other things. I started to make a list. There was the plaid, upholstered chair and matching ottoman that Katie used when playing with her iPad. The piping was torn in spots and the arms were stained and sticky. (Don’t even ask what we found underneath the seat cushion!) There was the huge mahogany desk from my ex-father-in-law’s office that Michael had left behind when he moved out. Plus the seriously ugly rocking chair from his ex-wife that neither of us wanted. And the burgundy leather wing-backed recliner that Michael had insisted on years ago. It had never really been my style, and whenever I looked at it I remembered the four month I spent sitting in it, waiting to see if my vision would return. I hated that chair, and that was before my last cat had clawed up the leather.

As I studied my list, I realized most of the items were things I had acquired with my ex-husband during our life together. Why had I stored Michael’s cast offs for nearly a decade? Partly because I couldn’t move them myself, but mostly because after losing so much in the divorce I felt I couldn’t afford to lose even more, couldn’t cope with further change. I was stuck in a mindset of lack and holding on, instead of one of abundance and letting go. Perhaps I feared too much empty space.

Whatever the reason, I was ready now. More than ready. I wanted a fresh start.

When I realized a modern flat-screen TV wouldn’t fit in the faux-antique armoire, I decided that needed to go too. The list grew and grew. In the end, my boyfriend Nate, his friend Gus, Katie, and I moved furniture for an entire day. The guys hauled an enormous load to the dump and another to Goodwill. Yet another load went to the e-waste recycler. I sorted through all of Katie’s toys and gave most of them away. It felt tremendously freeing to clear out so much unused stuff (dare I say junk?).

It was, it turns out, a great way to kick off the new year. Even if I still don’t have a new television….

Until next time,
Cynthia

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Tentative Release Date Set for Across An Aqueous Moon
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logoI just learned that Finishing Line Press has set a tentative book release date of June 24, 2016. I’m sure it will slip a bit as we progress, but my poetry collection, Across An Aqueous Moon: Travels in Autism, is coming to a bookstore near you this summer.

I will post updates as things progress.

Until next time,
Cynthia

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It’s 2016!
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It’s 2016! How in the heck did that happen?

Happy New Year

Wishing you a peaceful, prosperous, gratitude-filled year.

I’ll see you in a week with more of my Unplanned Life….

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Happy Holidays!
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Katie and I wish everyone a peaceful and relaxing holiday season.

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I’ll be back in two weeks with more of my Unplanned Life….

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Christmas Crafts, Part 3
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Route 1, North PoleBack by popular demand: my Christmas story, in three parts, which first appeared here in December 2011. It’s been updated a bit, but mostly it’s the same story that made readers laugh until they cried. Go on, read it again….

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The last time I set up the North Pole Villages was in December 2004. My daughter was a month shy of her first birthday, and while Katie was a world-class crawler, she wasn’t yet walking. We figured it was safe to assemble what we had belatedly realized was NOT the most child-friendly holiday décor.

The following year a friend borrowed the buildings to display in a hospital lobby. Yes, we had enough buildings, trees, elves, and accessories to fill six huge windows in San Francisco.

By December 2006, I was separated from Michael and reeling from a diagnosis of autism spectrum disorder. Master planning the North Pole was the last thing on my mind.

It was only after we’d divided most of our possessions that I realized how attached I was to those quirky villages and the tradition they represented. I wanted to keep the original twelve buildings. I offered Michael the remainder, which I thought was generous. He refused. He wanted the entire set. He brought the issue up at every settlement conference, mentioned it in every email.

When months passed and we couldn’t reach resolution, my attorney grew worried. “Please, for the love of God,” she begged. “Don’t make me go to court to argue about elves and Santa’s sleigh. I’ll never be able to face the judge again.”

I was hemorrhaging money as it was. I didn’t want to argue about anything, and certainly not Christmas decorations. I lay awake at night, searching for a compromise.

In the end, it was an incredibly simple solution. I offered Michael the core set for its current market value and he happily agreed. I used the money to help buy him out of our house. It turns out reindeer barns do appreciate.

Since then, I comb eBay each December and buy a single North Pole building. When it arrives, I unpack it carefully, greeting a long-lost friend. Then I store the box away, waiting for the day Katie and I can master plan the North Pole together.

For years that time seemed impossibly far away. I had a child who wanted (or should I say needed?) to touch, sniff, and sometimes even lick the objects in her world. She didn’t know how to “just look” at anything. But at last, after eleven years, it’s finally here. I’ve tracked down all the buildings and Katie is ready. I’m finally going to display my North Pole Village once again.

And yeah, I’m gonna say it. I can hardly wait.

Until next time,
Cynthia

 

UPDATE: We have two buildings on display in the living room. I belatedly realized Max the cat is more of a threat than Katie. I might need to design a kitty viewing station….

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