Storm Clouds on the Horizon
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lake-balaton-847072_1920My daughter’s interim in-home school program has finally begun. Although we can’t call it school because the word causes Katie to have an extended anxiety attack. Despite more than a six-week break, she continues to obsess about not returning to school. I will probably never know the full extent of what was happening to her at middle school, but suffice it to say, it wasn’t a good experience. I’m glad for her sake (and mine) that it’s over.

Now we are embarking on something entirely new.

On Monday afternoon I signed the completed agreement with the school district and on Tuesday morning we began. The first day went pretty well, and then trouble crept in on tiny feet and started looking for a home.

It’s only Day 3 of this experiment, so it’s really too soon to tell how things will work out. But I think it’s safe to say that Katie is pissed that her extended vacation has come to an abrupt halt. She wants to continue to sleep in, eat when and what she wants, and lay on the couch in her pajamas watching movies on the new HD TV. I can’t blame her. Who wouldn’t enjoy that?

Now to Katie’s shock and dismay, school has come to our home. Our home!!! Even worse, Caroline, the aide, isn’t letting her call the shots as I suspect she was doing in her previous classroom. She has to follow directions, eat on a schedule, and actually do work! I’m thrilled, but Katie seems determined to force Caroline out.

You have never seen determined until you have met my child. She gives strong-willed a whole new name.

Katie has begun a campaign of nonverbal communication that makes it very clear that she wants no part of this stupid plan. She’s using words as well. “No school,” she says again and again. “No Caroline. No thank you.”

CrazyThe strange thing is, as much as Katie fights the concept of school, it’s also clear that she is doing far more school work. Freed from the rigid school schedule, she can take short sensory breaks when needed and it has made a tremendous difference. It also helps that she is getting Caroline’s undivided attention. But still, the negative behaviors are increasing and I can sense that in the very near future, my house is going to take a beating.

This would be the same house that Nate and I have spent the past four months working to update and redecorate.

I had thought that we were long past Katie’s property destruction phase—and we are, when she isn’t in school. But I know my smart, creative, and now very angry daughter will use every tool at her disposal to get Caroline and the dreaded school to leave.

I feel a storm brewing, and it’s not going to be pretty.

Until next time,
Cynthia

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Two Steps Forward, One Step Back
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CrazyMy twelve-year-old daughter has been out of school for over five weeks. Katie is loving her extended vacation but I’m frazzled and depleted. Thank goodness that I have Nate in my life. He’s been doing a tremendous amount of sitting so I can leave the house to get a haircut, visit the doctor, meet with school personnel. Nothing fun or relaxing like yoga. Just the bare necessities.

In a few days I will visit the final autism non-public school (NPS) that was on the list I gave to the school district. Just as I suspected, a school focused on autism simply “gets” Katie and her needs. My problem may now be in selecting the best one. Katie could potentially be at this school for the next ten years. (Federal law guarantees special needs students a public education until they are 21. In California, they get an extra year.) I’m feeling the pressure of making the best possible decision.

The interim in-home program should have begun this week, but I am still negotiating with the school district. No sooner do we reach agreement on one issue then another one arises. Every time I get a revised draft, three more “weasel provisions” have been added. It’s an exhausting and stressful process, building a program from the ground up with minimal help from the district. I’ve had to research every line item, develop a schedule and a sensory diet, even develop a budget. I couldn’t have done this six years ago, or even three years ago. But now I trust myself enough to assemble what I know will work and then fill in the missing pieces.

I can’t help feeling that I’m working on something bigger than one child’s temporary program. A friend joked that perhaps I should start a school of my own. Is that what all this effort is for? Am I meant to start a school instead of a special needs law firm? Or build a school in addition to a law firm? When the director of an autism NPS told me that he could open another school site and fill it in less than a week, I began to wonder: is this my path? My next big adventure? Or something else entirely?

broken-pencil-schools-jpg_021534The past five weeks have felt like two steps forward, one step back. I’m making progress, but it’s slower, much slower, than I would like. Will all this work be worth it in the end? For Katie or perhaps the larger East Bay autism community?

There is really know way to know at this point. All I can do is trust my instincts, and they say to keep going, keep plowing ahead.

But what if this doesn’t work for Katie? What if the in-home program fails?

Then I remind myself that Katie was kicked out of a public school for the third time, and despite having average (or higher) cognitive abilities, still can’t read.

There is no way we can do any worse than that.

And we won’t.

Until next time,
Cynthia

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Pre-Sales Period for Across An Aqueous Moon Has Begun
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The advance sales of my poetry collection, Across An Aqueous Moon: Travels in Autism, started on Monday, February 29th and will continue until April 29th. My goal is to sell at least 110 copies, as the pre-sale period determines not only the size of the print run but also how much I get paid. I’m proud of this book and want it to reach as many people as possible, particularly those impacted by autism spectrum disorder. So I will do my very best to meet or exceed my goal.

You can order the book from the Finishing Line Press website here.

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The book is scheduled to be released on June 24, 2016.

Until next time,
Cynthia

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It’s Always Something
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Please do not feed the fearsThis past fall my daughter transferred back into our home school district. It’s a place that for whatever reason seems unable or unwilling to meet Katie’s needs. So now both she and I are in the throes of yet another mid-year transfer. Except there is no place for her to transfer to this time around. Well, no place I am willing to accept.

It took three rounds of this high-stress drama for me to finally let go of my fear-fueled anger. To see that these are hard-working people who simply don’t know enough about autism to do their jobs well. It’s unfortunate, but nothing personal—except it is personal in that my daughter’s future is at stake.

The school personnel are in over their heads. They do not know how to accommodate Katie’s needs. This is the reality.

The other reality is that my sixth grade daughter can’t read, and I know she is more than capable of that.

Part of the problem is that in addition to autism, Katie also has dyslexia. This is an important piece of the puzzle because the “autism way” of teaching is at odds with the multi-sensory approach that she needs to learn. The school may not want to accept this fact, but I am convinced. Barb, the retired special education teacher turned reading tutor, is too. Katie has dyslexia in addition to autism and sensory processing disorder.

Katie is capable of reading with the correct approach. Barb has proven that, and I have to believe that the school personnel know this as well. They just don’t know how to teach her.

Helen Keller and Anne SullivanI need to find someone who can. I’ve said this before: I need to find Katie’s Annie Sullivan.

I do not like what my school district is doing to Katie or to me at the moment, but I am grateful that I have finally been able to let go of the fear and anger. I needed to reach this point in my journey as a parent advocate. In the process, I have learned some things about state special education standards that makes me burn: with rage, injustice, and yes, passion. I feel I will be doing some lobbying in the future, but not right now. First I have to help my daughter.

I don’t know how this chapter of our special education journey will end. I don’t know what NPS I will select. I don’t even know if a school exists that can give Katie what she needs to learn. There are autism NPSs and dyslexia NPSs, but so far neither seem capable of solving the puzzle that is Katie. Each can only address a portion of her needs.

In the interim, we are putting together a home program. This will allow me to experiment and see what works best for Katie. Because clearly, the school district doesn’t know.

It’s a lot of work, researching two separate paths—home program and NPSs—at the same time, but it feels good to be moving in a direction that feels better for Katie (and me).

Until next time,
Cynthia

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Celebrating My 300th Post
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Champagne_uncorking_photographed_with_a_high_speed_air-gap_flashIn honor of my 300th post (yes, this is lucky number 300), I’m asking you, my faithful readers, to help me with a little project. I have been thinking about compiling a book of essays culled from my blog, An Unplanned Life. I might throw in a few others for good measure, but mostly I intend to use material from the blog.

I need your help in selecting what to include.

I’ve been writing pretty much weekly, with a few lapses, since 2011. That’s a lot of time and a lot of posts. 300 to be exact. Which ones did you like the best? I want to know!

Respond in the comments below or shoot me a message. I look forward to discovering which posts were your favorites.

Until next time,
Cynthia

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Updating My Life Vision
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10931724_10153038045125801_5193524999750374991_nI’ve been doing a lot of thinking over the past few months about why I’ve stalled on the law firm with heart. It’s been a bit of a mystery to me why I haven’t launched. Sure, I had a book manuscript to revise. Sure I had other stuff going on, but that has always been true. What was holding me back?

It’s been an embarrassingly long time since I announced that I was going to launch a special needs advocacy center. My intention in January was to get clear on my updated life vision. Did it include a law firm? Either I was going to launch once and for all, or else let it go and move on.

Here’s what I’ve figured out:

1) I can’t help anyone until I’ve helped my daughter. Until I get Katie into the right school/placement, I can’t focus on anyone else. It would be great if I could go back to the old days and compartmentalize my feelings, but those days are long gone. I need some closure on this ten-year battle.

2) I’ve been reluctant to start my law firm because I was worried that my school district would retaliate. I hadn’t recognized this as an issue until a non-public school (NPS) was on the table. Once it was, I felt a tremendous sense of relief. Moving Katie to an NPS greatly diminishes this fear and reduces much of my resistance.

3) I have been so drained by the constant fight to secure services for Katie that I’m not sure I have anything left to give other families. Again, moving my daughter to a NPS may solve this issue. Or not. Time will tell.

4) I am really, really tired of fighting with schools. Even if in doing so I can help others. This saddens me, but it’s the truth. For now. This has been a bitter pill to swallow.

explorer-gear-377x2695) What I most want right now is ease and simplicity. I’ve said these words before, but it’s become increasingly clear that this is what I need to focus on in 2016.

6) In my search for ease and simplicity, perhaps I should find a “good enough job” to take the pressure off. I’m not sure I have it in me to launch a law firm right now. Another difficult pill to swallow because I want to believe anything is possible. And it is, just not all at once. This has always been a tough concept for me.

7) Lastly, the forthcoming book (and the 2 others in progress) feels really juicy right now. I’ve worked hard for this and I want to savor it. I want to focus on writing and book promotion during my brief “moment in the sun.” There is nothing wrong with this. I just need to find a way to pay the bills while I do it.

The other, bigger, issue is that my priorities are shifting. There is a man in my life who seems determined to stick around. I need to go with the flow and see what develops–not just with our relationship, but in all areas of my life.

So I’m going to send out resumes, visit private schools, clear out clutter, redecorate the house for the life I have now, and learn about book promotion. I will keep moving forward and trust that when the right thing comes along, I’ll know. I suspect once I get Katie’s school placement sorted out (both short and long-term), everything else will become clearer.

The bottom line: I want more ease and less struggle in 2016. It’s all about ease this year. Ease and self-care. Expect more on this as the year progresses….

Until next time,
Cynthia

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Revised Book Cover for Across An Aqueous Moon
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Last month I shared the book cover designed by my multi-talented boyfriend, Nathan McKenna, for my forthcoming poetry collection, Across An Aqueous Moon: Travels in Autism. Finishing Line Press (FLP) loved it–until they switched printers.

The new printer means that my chapbook will be perfect bound, just like the books you buy in the store. It also means that the design specs I was given for the cover no longer apply. So FLP redesigned the cover, using Nate’s artwork, to take advantage of the more sophisticated printing capabilities.

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I may be biased, but I still think it’s stunning. I’m hoping FLP will switch back to the font Nate and I selected because a) I liked it better, and b) it’s easier to read. But other than that, I am pleased.

Publishing, I am learning, involves a fair bit of letting go.

Until next time,
Cynthia

 

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More IEP Woes
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broken-pencil-schools-jpg_021534My daughter Katie has once again been kicked out of school, from a special day class no less, in our oh-so-wonderful district. Apparently autism is too mysterious and complicated for them to handle.

Or something like that.

This time around Katie was only suspended twice, for a total of four days, before she was essentially given the boot. I was told I could either keep her at home or the second suspension “would be extended.” I’m pretty certain a suspension can’t be extended beyond its original term, but since Katie would be at home either way, I accepted the inevitable.

The school calls this a voluntary decision. I call it pissed off acceptance and nothing more.

Oh, and Katie hasn’t been kicked out. She just “isn’t in school.”

As of today, Katie has been out of school for a total of 15 days. That’s three weeks of school. Federal law guarantees her what is known as FAPE—a free and appropriate public education—but clearly that isn’t happening.

Even when she was in school, her teacher estimated that he managed to teach her for roughly 30 minutes out of a six-hour day. “She’s not really teachable,” he said. “Not with all that behavior.” Behavior he helped to cause.

To me, this is an epic fail on so many levels.

So now my child is sitting at home, drawing on her iPad and watching Inside Out and Shrek. The mere mention of school causes anxiety nearing a full-blown panic attack. She’d been asking for months not to go to school, and finally the district granted her wish. As far as Katie’s concerned, she’s never going back. Ever. I, of course, feel somewhat differently.

Stack of papers2As the drama was playing out in December and January, first the Principal and then various school administrators raised the issue of a non-public school (NPS). That’s more or less a private school. In the past, my district would have fought a NPS placement tooth and nail. I would have fought it too. I used to believe in the public school system, but this ongoing special education saga has opened my eyes. I’ve peered behind the curtain, and what I saw left me  depressed, disgusted, and furious.

This time around, no one is fighting an NPS. The problem is, almost all the NPSs are full until summer or the 2016/2017 academic year. I have huge reservations about the few with immediate openings. There’s only one I would even consider—and it’s located in inner-city Oakland.

So I am now in discussions with my not-so-trustworthy district to develop an interim in-home program while I continue to visit autism-specific NPSs that should have openings in four to six months. Am I happy about this? Not really. Yesterday I learned the district “hopes to have something in place” by March 7th—a full five weeks after Katie’s second suspension on February 1st. And if I don’t like what they offer? Well, there’s always that school with the leaky roof in inner-city Oakland. Sadly, that’s a better option than the place Katie was at.

I have no idea how this story will end, but I can tell you one thing: it can only improve from here.

Until next time,
Cynthia 

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The Downside of Facebook–An Update
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facebook-LogoBack in November 2015, I wrote a post called The Downside of Facebook. (You can read it here.) Afterward, I received a surprising number of messages—private messages—from friends who admitted that they too experienced negative emotions, including sorrow, guilt, frustration, and even jealousy, after viewing others’ posts on Facebook. Many also asked: why me? Some were fellow autism moms, but others were not. This surprised me. If a person has the kind of life that I sometimes covet, what could he or she possibly have to feel sorry about?

Plenty, it turns out.

While my informal poll is not in any way a statistically significant sampling, my guess is that pretty much anyone can feel crappy on any given day after a stint on Facebook. Or any other social media outlet, for that matter.

The list of potential triggers was long and varied: better looking/smarter/more popular, talented, or athletic offspring; spouses that were better looking/richer/younger/more attentive; kids in the house; kids out of the house; spouses that were working; spouses that were not working; spouses that gave better gifts; single and “having fun” or married and “not online dating.” People compared jobs, cars, houses, toys, recreational activities, and vacations. If they were women, they also compared girlfriends (as in, number of and apparent closeness), clothes, shoes, weight gain, and what one gal called “the frump factor.” Men compared waistlines and hairlines. Everyone thought everyone else was having more sex, or at least better sex. Everyone thought others were having more fun or were just plain happier.

It made me sad to think of so many people brought low by Facebook.

Nearly everyone emphasized, as I did, that most days they enjoyed seeing their friends’ photos and status updates. It was only once in awhile that they got blue. Just now and then. Some even mentioned intentionally avoiding social media when feeling depressed so as to “not get suicidal.”

I thought about these comments after I received them, pondered the vast variety, the ironic contradictions. Then it struck me: Facebook is the mirror from which we sometimes hide. It reflects back whatever our lives are missing. We see our friends experiencing what we wish to have and feel the sting of regret, the bittersweet taste of loss. Facebook is a reminder of our longings, a visual record of everything for which we yearn. It forces us to confront not only our hopes and dreams, but also our guilt, shame, and grief.

Facebook may serve as a mirror, but it reflects a distorted image. My brother isn’t on Facebook, but if he was, he certainly wouldn’t have posted updates when he learned his ex was cheating on him with the little league coach. He wouldn’t have posted photos of his kids’ after they lost a big soccer match. No, he would post happy engagement and wedding photos with wife #2. He would share his kids’ wins, their accomplishments. I do the same. I didn’t announce Katie’s diagnosis with autism spectrum disorder or my filing for divorce on Valentine’s Day 2007 or even the long-awaited conclusion of my divorce in November 2009. Instead I share Katie’s milestones, her artwork, and the funny things she says. I write in my blog about the days that are bad, but even here I try not to dwell on the negative, because really, who needs more negative these days?

Sweater unravelingThe problem is, my desire to not bring others down in the moment has the unintended consequence of bringing them down later, when they least need it.

Our obsession with social media forces us to “put on a happy face” more often than not, when what we really need is truth and authenticity. Because when we omit all the negative emotions, we are lying by omission. We are refusing to expose the messy details of life.

So I, for one, plan to be a little more authentic, a little more vulnerable in the future. How about you?

Until next time,
Cynthia

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Book Cover for Across An Aqueous Moon: Travels in Autism
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As I shared back in November, my multi-talented boyfriend, Nathan McKenna, created some amazing artwork for the cover of my forthcoming poetry collection, Across An Aqueous Moon: Travels in Autism. The original plan was to use some of my daughter’s artwork on the cover. Katie’s artwork, however, is extremely colorful. We found it just didn’t translate well to black and white. Nate was determined to design a beautiful black and white cover to keep costs down, so he created the art himself and then designed the cover.

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I may be biased, but I think it’s stunning. Hopefully Finishing Line Press agrees.

Until next time,
Cynthia

 

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