Monday, December 31, 2012

Words We Live By

"It is imperfection — not perfection — that is the end result of the program written into that formidably complex engine that is the human brain ..."

I read these words in a NYT article on Dr. Rita Levi-Montalcini, who recently passed away. Dr. Levi-Montalcini was a neurologist who persevered against cultural norms to follow her desire to become a doctor at a time when women were expected to marry, becoming housewives and mothers, and Jewish people were not allowed a profession in her home country. The contributions she made to science, and our understanding of cell growth and nerve networks was revolutionary.

Not a perfect picture; but guess what -
he was having too much fun to stand still.
Her words have struck a chord with me. It reminds me of what made art so fascinating for me. Mistakes in execution of a piece can lead to great discoveries. The realization that 20 people could look at the same thing and render it back 20 unique ways. That imperfections and mistakes are not necessarily calamities, failures, or cause for embarrassment.

Dr. Levi-Montalcini's words are also meaningful to me at this time with James. In the midst of a school year where he is being pressured to fit in,  become a model student, and measured against educational standards of normal, it helps me pull focus and remember that the world is not perfect. It gives me pause to remember that, although at school James is seen (by several on his team) as flawed and not capable of academic achievement, his imperfect brain still interacts and reacts with the world. He is still growing and learning. On his path, not theirs. And that is okay.

With imperfections come discoveries, surprises, and new things that can lead to changes in our world. It makes life a little more breathtaking and wonderful. To me, that is better than perfect.

Sunday, December 30, 2012

Here I Am


              Still here.
                           Overwhelmed.
                                               Saddened.
                                                             Still breathing.
                                                                                     Still hoping.
                                                                                                         Still loving.


And finding out there are still good things to be grateful for.

Friday, November 02, 2012

Halloween Spunk

October's been a tough month for us all here. James has progressively resisted going to school, practically breaking down in tears and begging me not to go. Routine has flown out the window in chunks at home and at school almost daily. Second grade is ramping up challenges for learning and behaviours.

Witch and splatty witch, on our way to school
on Halloween morning.
To James, October was a magic month. It meant Halloween. He was very firm about what he wanted to be: a witch. Not a warlock. Not Harry Potter. A witch. He asked every day to go looking at the Halloween decorations. Splatty witches are still a big thing for him, and luckily I found a version of one at the Dollar Store and brought it home is September, because they were gone like *that* and James took immense pleasure in helping to set it up on our very own garage door. It kind of made up for our van disappearing and not coming back (that's a story for another time). He also liked spiders, webs, and bats. Skeletons fascinated him.

A trip to the Party Store a few weeks back put a big grin on his face. We got him his very own witch's hat and an Angry Bird trick-or-treat bag. K-Mart had a dynamite 50% off sale on costumes the day before Halloween and I picked up capes for his sister and him. A good friend sent us scads of cool glow-in-the-dark necklaces, which we all wore around our necks so the motorists could see us.  James' Halloween witch's cup was full.

It was very hot until the day of Halloween; then it rained that afternoon and evening. James didn't care. He helped put up decorations and kept talking about Halloween while we ate pizza. Then he pulled on his boots, held a ladybug umbrella in one hand, high above his pointy hat, and his Angry Birds bag in the other before sailing out into the dark and stormy night. We went three blocks in the rain, braving puddles, Evil Dead-type houses, and barking dogs. At each door, James sang out "Trick-or-Treat!!" and "thank you!" with an occasional "Happy Halloween!" thrown in for luck.

We arrived back home, soaking. James was happy to change into his jammies and curl up with blankets and watch me hand out treats at our door. Right now I am looking at an Angry Birds bag that is 1/3 full of candy. He hasn't touched it. It's not the important part for him.

Sunday, October 21, 2012

I'm A Real Live Wire

I haven't been posting.

It's not because things aren't happening. Oh no. Quite the opposite and much of it not fun. Some I can't because it's ongoing, and it's all I can do to keep from being swamped by it all.

Family health issues, severe problems at one school, increased support duties for me, and worsening financial outlook overall. It's all one big smörgåsbord of challenge and angst. One of those special times when family and friends offer support but most of the toughest things that need doing seem to have my name on them.

So for all you Talking Heads fans (yay), here's reassuring you that I'm not a Psycho Killer, I have plenty to say. It's just going to be a while before I can put it in this blog. I'm not planning to run away.

Wednesday, September 19, 2012

Special Exposure / Wordless Weds: Harvest Time

This has become one of my favourite seasons -- summer's winding down and the rich colours, smells, and tastes of Harvest begin. Holiday planning starts in earnest, and both kids look forward to their birthdays.

What better way to capture some of this than at our Sunday Farmers' Market, on my cell phone?

James loves live music and musicians.
Beautiful and tasty display

It's relaxing, listening to live music

Now here's a thought -- bring an instrument!

Or, you know, sing along ...

Largest focaccia on record!


For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.
5 Minutes for Special Needs





               and ... Wordless Wednesday

Monday, September 17, 2012

Crazy Busy

My husband is starting a new job, my daughter has joined the volleyball team, I am coordinating a big class fundraiser, prepping for James' IEP -- his TRIANNUAL IEP (and they are asking if he can be a case study for a student and suggesting a new test for him), preparing to jump into the CATS Program for another semester, and fighting off a cold.

Good day to pick up extra shifts at school! I am job hunting without a lot of luck so far. I am trying to find part-time so I can be here for the kids as well.

Ah, that reminds me -- I have another web project cooking for some clients. Good project, good folks. I am excited to be working on this.

However, it's been extra crazy busy lately!

So I pause to fondly remember a lazy couple of hours at our Farmers' Market yesterday morning. My daughter and I met friends, strolled the market sampled some delicious food (pain au chocolat for her and part of a divine berry tart for me), and kicked back:

sourdough ficelle from Panorama Baking

and that goes for Sunday, too!

beautiful zinneas

playing with Shelby

Sunday, September 16, 2012

SOOC Sunday: Sneaky Fall

Went out back for the first time in a week or so and instead of late summer I found:











What happened to Summer?

Sneaky Fall!


Linking up once more with Murrieta 365 for some SOOC show and share, where it's all straight-out-of-camera (SOOC).

                                                                 

Saturday, September 15, 2012

Mysteries - With Extra Fruit!

I am trying to figure out a puzzle that looks like this:

A pencil, a bag, some gum, and a conundrum.
James brought this home in his backpack on Friday. I asked if someone had a birthday in his class and he said "Yeah." Then I unpacked his communication notebook and discovered these were really rewards for hard work.

Yay for rewarding hard work! Um, but what kind of hard work? No clue.

James chose his prizes. The pencil with numbers on it makes sense. He likes and uses both. But the gum I can't fathom. To my knowledge, he's never tried it.  And he's ignored it since it arrived home with him.

I'll keep trying to get James to explain this to me. Push come to shove, I'll ask his aide. It's a little thing, but the unanswered questions about his day are nagging at me.
 

A New Lunch Buddy

Tah-dahhhhhhh!!

The strange fascination that is Angry Birds

This is noteworthy because in the almost 5 years that James has been going to school, he's taken 2 lunch bags to school, 1 of which lasted 4 years. They've been generic, sturdy, and free (we've been to some community events with great swag).

This year, as I whisked the kids through Target for some final back-to-school shopping, James saw the Angry Birds lunch box and stopped dead in his tracks and picked it up. "Can I have this, Mommy?"

I practically can count on 1 hand the times he's asked this, and it's never been for a school supply. Of course I got it for him. And marked it with his name. Which is a good thing, because another boy in his class has the same lunchbox. This makes me very happy.

Friday, September 14, 2012

Follow Up: Support ... I Think

Catching up a bit here from a big shakeup or three in our family cosmos. Received this letter in the mail and wanted to share:



My first response was elation and a small frisson of delight. My first letter from Congress regarding an issue I'd detailed in an email to my representative! I know it's a form letter, but still.

Recently, I was able to read through it with greater concentration, and my reaction became a bit more ... layered. First, the second paragraph provoked an ironic smile. Yes, please tell me more about what autism is. Okay, no don't. I live with it and I believe that you, or at least your staff, has done its homework (at least until the fourth paragraph).

I had trouble understanding the next paragraph. I may have gotten a high grade in Civics and History back in, um, the 80s, but that doesn't mean that today I understand our legislative process (shame). Hello, Google -- let's take a few random legislative tours.

In particular, I was struck by the lack of detail in that third paragraph's last sentence (especially after the pithy summaries above) -- what does it really mean, when a Representative "supports" a bill? So I Googled H.R. 2005, and how Mike Thompson voted on this bill. Top results for me involved co-sponsoring of this bill. I learned one thing: Mike Thompson was not a co-sponsor. Query, what is a co-sponsor? Answer: link.

Okay, so a not being a co-sponsor does not equal non-support. Again, what did Rep. Thompson do to  "support" this bill?

I searched for his vote and found nothing. Curious. So I researched the approval process for this bill, and refreshed my memory on the journey of a bill. Thanks, Project Vote Smart! I verified that, per Rep. Thompson's letter, the bill passed in the House on September 20, 2011. A little more digging found that the reason I could not find a voting record is because the bill passed in the House by a voice vote.

Was Rep. Thompson one of those voices? I sure hope so, but he didn't specify that.

For the curious, here's an interesting look at how the bill was distributed to the House that September 20th (link to PDF file; bottom of page 10, you're welcome). And it you want to see the official Law (unsigned, but veritas in PDF format)? Here ya go!

I was not happy to see see autism lumped into "debilitating conditions and diseases" in paragraph four. While some sensitivity and physical issues related to autism may be debilitating, autism is definitely NOT a disease. You can't catch it from someone else. Bad form letter; no biscuit.

Last year I advocated that sb 946 be renewed to keep funding in place at our state's level for autism research and services. I sincerely appreciate Rep. Thompson's follow-through to report that H.R. 2005 was signed into law by President Obama (yay!) and the exact date of the signing. In an election year, it's important to remind constituents of how their interests have been represented.

A little more clarity on the "support" given to H.R. 2005 would have been excellent and I sincerely hope Rep. Thompson and his staff are aware that autism is not a disease. I am glad to see that one of my Congressional Representatives is aware that autism is a big issue to lots of families, and he's willing to go on record as a supporter of research and services to help those affected with autism.

Layers, I tell you -- but with a hopeful feeling, overall.

Thursday, September 13, 2012

How He Makes Me Smile

Exhibit A: Hurt Waffle
6:50 this morning, from inside James' room: "Mommy? Can I come out?"

Me: "No, kiddo. Ten more minutes."
(It's part of my strategy to curb his early morning wanderings.)

Note: I'd already made him toasted blueberry waffles and given him some milk and had him eat so he would not be ravenous.

From depths of bedroom: "Ten? Ohhhhh nooo!"
Thud, as he topples back into his car bed. Then, "Help! I hurt my waffle!"

Time for more coffee. He gets out at 7.

Wednesday, September 12, 2012

Six Months Later ...

During the morning rush to get everyone ready to school, fed, and out the door on time, James threw himself on the sofa and announced: "Mommy, my heart is beating. Is your heart beating?" "Yes, James, it is," I replied, thrilled that he was showing an interest in slightly more metaphysical things and being able to talk with me about them.

"What about Uncle Buzz? Is his heart beating?"

Wow, right over the emotional solar plexus. But time for truth.  "No, Honey, it's not," I said, trying to be calm and low key.

"What happened?" he asked.

"It just gave out. Our bodies work very well, but eventually, they wear down and stop working."

A bit of thoughtful silence. Then: "Is he asleep?"

 "Kind of."

 "His heart has stopped?"

 "Yes."

"Is he waking up?"

"Well, Honey, he's in my heart and yours, always, because we remember and love him."


And now it's time for the school run.

Wednesday, August 29, 2012

Special Exposure / Wordless Weds: Pensive

School has started, and what a lot of changes we've rolled with: physical location, expectations, classroom environment, different classmates, rules (lots of those), hours ... I know James has a lot to process. How I wish I could really talk with him, to find out what he's thinking.

Glad for the quiet moments, and some free time outside.


For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.
5 Minutes for Special Needs





               and ... Wordless Wednesday

Monday, August 27, 2012

SOOC Sunday: Waving at Summer

Scenes from the ranch, as we wave good bye and thank you to summer. The kids explored the creek, bounced like jumping beans together on the large trampoline, and used the zip line like a crew of stuntmen. Baths and early bedtime once we got home. And some really nice images as souvenirs:
Singing as they tumble along on the Austrian fire truck.
On safari.

Relaxing after all the fun.

Sundown and gold in the grass.

Beautiful mystery plant.

2012 was a really good summer. Au revior, mes amis.


Linking up once more with Murrieta 365 for some SOOC show and share, where it's all straight-out-of-camera (SOOC).

                                                                 

Saturday, August 25, 2012

Tall Guy

Woah! James just tried on a new pair of long pants this morning. My "baby," at 7 years, can fit size 8-10 pants. And his legs are smaller proportions than his top.


See these sandals? The Tevas are size 10. I think his are size 3. When I bought them in March, they were at least 2 sizes too big. He fits them now. I am so not buying school shoes/tennis shoes until the rain's about to start.


This morning I measured my guy -- he's over 53" tall. That makes him 4' 5" tall+ and me rather blue. Where'd my Baby James go?
Howarth Park, about 3 months old
 Sorry, Honey -- Mom's prerogative!

Thursday, August 23, 2012

Pick-up Time

Wow, we moms are a swarmy bunch! Waiting for my guy in the shade, admiring the garden and warm afternoon sunshine.

I love these angular windows. They somehow recall TV space and science programs from the early 1970s.

Wednesday, August 22, 2012

Special Exposure / Wordless Weds: After School

Both kids are back in school. Big changes this year! Big sister is an upper classperson, with a different start schedule and change-ups at recess and lunch. She is in a room with lots of new classmates. Her school changed to a charter, with emphasis on math and science, which is right up her alley. She is going to be a Big Buddy to some lucky little kid, instead of being the Little Buddy.

James is on a campus he's attended before, but for a special day preschool three years ago. At this second grade level, aides are not available before or after school, so we are coping with being more self-directed at these times. Class is much more structured than he's been used to over the past year; it's not the one I advocated for. And its a challenge to have him use his voice appropriately. I have a meeting tomorrow with his services coordinator. Yesterday I got the notification in the mail about his 3-year assessment, and I am contemplating what this means for James. It's hard to play chess when I am not sure of which pieces I have, and the rules are hazy and not fully formed in my brain.

So after yesterday's pickup, we hit the library and then walked across the Green to Yogurt Farms for a frosty treat. James lost his temper and yelled, almost crying, when I told him he needed to wait his turn in line to get his yogurt rung up. He'd held it together all day so well, but that was one thing too much. He howled and melted right before us all. Thank goodness he was able to get to a seat and remain mostly seated, occasionally stating loudly "I am very angry!" and making his dinosaur noises for the two minutes it took to reach our turn. Then we skedaddled across the street to the park, and life took a much calmer, better turn:



For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.
 5 Minutes for Special Needs





               and ... Wordless Wednesday

Monday, August 20, 2012

A Little Story

James just asked to call his Nana. He's been interested lately in talking to all his grandparents. He was able to tell her a little about his day at school.

He told her his one knock-knock joke. It has now morphed into:
  James: "Knock-knock!"
   You: "Who's there?"
  James: "Big grey sum!"
   You: "Big grey sum who?"
  James: "Eeeeeg-xactly!"


Dada Bulletin No. 7; the Chicago Art Institute

And then: He told her a bedtime story. Because I said we needed to wrap up the call (which was totally free-falling into Dadaism) so Nana could go to bed.

"Once upon a time, there was a princess named Anna. She went to school. And then, she went to hiiiiiide  (runs into bedroom with phone, laughing)!" Long pause. "Uhhhhhhm. And she lived happily ever after. The End."

Such a little thing. Such a big breakthrough, that he can do even this much this now.

It's totally made my day.

Looking forward to the next chapter.

Sunday, August 19, 2012

SOOC: Summer Lightbrellas

Just looking through some of recent photos and these umbrellas caught my eye. They seemed to be filled with light, as well as making shade for those of us below. It's a perfect way to capture summer for me, SOOC:


I just wish I'd had an umbrella for this:


Linking up once more with Murrieta 365 for some SOOC show and share, where it's all straight-out-of-camera (SOOC).

                                                                 

Saturday, August 18, 2012

Relaxation Ranch

The kids and I have been lucky enough to spend some afternoons on a ranch recently. It makes me so happy to see the kids spending time outdoors, unplugged, and enjoying a real Sonoma County summer. I love the slower pace, taking in nature and getting a chance to catch up with my cousins. This is how I remember spending my time from June through August while growing up.

Some photos:

Yes, he is drawing pictures in my sketch book.

The quenching vehicle! Also, horse shoes game is ready to go.

I'd just finished explaining that James probably couldn't hold on tightly enough to do the zip line ...

What do I know, right? Look at him run!

Summer in Sonoma County -- Thanks, Sara and Ed!