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!

So Glad It's Saturday

Oh my goodness, what a lot has been packed into the past two days. School worries already and a homefront crisis. For the win, I have a sinus cold. So I was very glad to not have to get up or go anywhere soon this morning.

Remember that post about me being glad that James is talking more and initiating conversations? Well that was ironic -- he was asked to leave class on his first day of school for talking too much during class. Ouch. He actually left class twice on the first day -- one was related to his aide's break schedule. So now I am walking the fine line between "what the heck do you mean by pulling him out of class on the first day?" and trying to find out what's going on and seeing what I can do to help make sure James stays in class while remaining engaged and behaving appropriately. I also want to make sure that he, his class, and aide are all good fits for each other. I know, I know -- but I'm his mom. Who else ya gonna call?

Speaking of calling ... I can't reach his services coordinator by phone. They took away her portable, put her somewhere new, and no one seems to know how to get her up and running on her new phone. Um, I know start of school is insanely busy ... but I also worked in Facilities -- betchya I could get it up and running without waiting for the District IT folks, but I digress.

My plans for observing James in class on Day 2 were foiled by a financial crisis. There is nothing like panicked phone calls from your partner and the fear of financial insolvency to get that ol' bp up and running, you betchya! I do have mad skills in bureaucratic process and can sometimes remain amazingly calm in a crisis. These helped to resolve the worst issues before 4PM, but by then James was out of school. I was told Day 2 went much better and there were no time outs. I am still going to observe his class next week ...

By 5:00PM, I was at my daughter's campus, looking at class lists. Five minutes later, my heart was in my shoes. She was in exactly the classroom that she wanted, but I think I can read between the lines and now am concerned that she is being left out of the academically motivated group of kids at her grade level. After the last few days, I am trying to breathe deeply and remember the good things -- like the fact that she is in an excellent school and has friends there. That she will be starting 4-H next month and there are 2 more grades after this one.

That maybe I can't see the whole picture because of my fears.

Because this week, there seem to be so many of them around.

I need to close my eyes, have a little faith, and visualize ... with intent.
This is how I need to move forward.

Thursday, August 16, 2012

Special Exposure / Wordless Weds: First Day of the Second Grade

Today James had his first day of the Second Grade (*clap-clap* -- man, I've got that song from Veggie Tales in my head!) ... and he as excited to get ready. He could hardly turn loose his brand new Angry Birds lunch bag for me to fill it. He was so proud and excited it was his, I would gladly have paid twice what I did just to see him with it this morning. He ran to pack his backpack, and thanked me for getting it out for him this morning.

Here is our guy, ready for some new adventures:
He's wearing size 10-12, folks, with size 3 sandals .. and is still 7.

The First day, of the Second Grade (*clap-clap*) ... no to first aid, in the Second Grade!

Even though it's Thursday, 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

Sounds of Little Big Things

Over the past couple of weeks, I've been preparing for the kids' return to school. I can tell James is excited because he has been asking constantly when he gets to go to his new school (in our district, from K-5th, the kids move on to a new campus every other year). He is talking more and loudly. I see more hand-flapping and a decreased desire to go to bed.

I did mention the talking, right?

Because yesterday we went to a meet & greet at the school, so the new students could be on campus and see their teachers and classrooms before the start of the academic year.  James enjoyed it, and spent time on the playground, looking for friends. On the way home, I heard him telling his sister who he saw and and where he saw them. I asked what did he like about his new school and he replied with the name of his aide, whom we'd met the day before.

He talked about the "park" (playing field) at the school. He talked about which of his friends he still wanted to see. He kept asking if he was really going to this new school, and I kept telling him "yes."

This may sound pretty dull and typical. It's not for us. James is volunteering conversation, and able to sometimes respond to our questions in a normal, conversational way. It makes me so thankful to hear him chatter and exclaim. For so many years, I had to listen with "just" my eyes and heart.

Magic Marker Monday: Giftalope

Q: What can you do for a birthday present for a Dad who doesn't want you to buy him something?

A: Give him a Giftalope!
Daddy's favourite breakfast fruit, all gussied up for his birthday!
Thanks to our daughter, who is incredibly gifted in so many ways.

The smile it produced = Priceless!

For more great masterpieces or to share some of your own, visit
 5 Minutes for Special Needs for more Magic Marker Monday.

               Special Needs Blog                  Photobucket

Sunday, August 12, 2012

SOOC Sunday: Fair-well

Summer's wrapping up. James starts second grade this coming week. Yikes!!

I'd promised the kids another trip to the county fair, so they could try rides and games. It turned out 1 Ride for Sister and 2 Games for James. Plus exhibit looking for me. We went early this time, and I think that was a good call, as the day was HOT. Also crowded, because children got in free and adults could get $2 off with a food donation.

So while we had Discussions and Strategy for attending the fair, we had a good time. Here are some highlights, SOOC:

Oh, this is classic. I love my guy!

Amazing Walk on Water "ride" that costs more than regular admission! It looks like a ton of fun, too.

What's not to like about shooting a water gun?

No ride this time - James will not take this well.

Mmmmm, flowers!

Just like this hibiscus.

Eco-Recycled materials room: pure awesome fun for half an hour.

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


Friday, August 10, 2012

Listening Goes Both Ways

We've already heard a lot of name calling in the months leading to the upcoming elections.

Our governor has told us that to help balance the budget, we as middle class citizens will need to pay more in taxes.

The past two governors talked about having to cut costs by increasing our hardships --  many of us pay for our childrens' supplement for services on a reduced family budget, because funding has been slashed for the Regional Centers. Our schools are reeling from recent budget cuts and broken promises to replace monies already robbed from their budgets.

Our Congress seems more intent on religious and political vendettas rather than listening to their constituents, building consensus with We the People, and taking steps to preserve our quality of life now and in the future.

The presidential candidates don't seem to have those on the spectrum on their radar. This is not good, because in 10 years, the first waves of 1 in 88 children diagnosed on the spectrum will be adults. What will their lives be like? Where will they live? What jobs can they hold? What is our national plan to integrate them in society?

It's not Chick-A-Fil; it's about children.
Our children. Our future.
In a decade, 1 in 88 adults will be on the Autism Spectrum; will we be ready?

It's time for our politicians to listen to us, and those on the spectrum.

Please register to see how you can get involved and make your voice heard.

My confirmation of registry email.
This is how we start.

Thursday, August 09, 2012

Special Exposure / Wordless Weds: Mr. Big

"Mr. Anderson ... you disappoint me."

At Denny's waiting too long for goldfish crackers to arrive.
(and yes, I know I am mixing my movies and quotes)

For more day-in-the-life images and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.
5 Minutes for Special Needs

               and ... Wordless Wednesday

Wednesday, August 08, 2012

Where Is the Evidence for Autism Patient Care?

Paul Corby
I have been seeing posts around the blogosphere recently about Paul Corby, a young man with a congenital and deadly heart defect, who has been denied a heart transplant. There is a short list of reasons for denial, and number 2 on the list is ... Autism (link to story).

Quite frankly, I don't understand this. Why would Autism be considered a medical reason to deny a life-saving procedure? The rejection letter (that has been posted) provides absolutely no details or references scientific evidence why Autism is a contraindication for a major organ transplant.

A contraindication, by the way, is a condition or factor that may increase the risks of a medical procedure. Contraindications are absolute (as with proven dangerous results) or relative (where the results of the procedure are usually too complicated by said condition to be truly effective). I can't find a definition of all this quickly, by the way, I had too look through dictionary websites and a quick Google search with "Autism as a Contraindication" filter.

The closest thing I could find in my quickie online search was that some medicines used to treat anxiety and aggression are contraindicated in Autism patients with heart conditions (link to source).

So, without knowing all the facts, and being Jane Public (mom of a child on the spectrum), I am left with the impression that the doctors really don't know how Mr. Corby's Autism would impact the effectiveness of a heart transplant. They list instead complications of the complex procedures (which, I am pretty certain all heart transplant patients face) and "unknown and unpredicatable effects" of steroids on Mr. Corby.  Well, not being able to pump 80% of your heat's blood back out into your body is kind of a huge complication already and it predictably leads to reduced quality of life and a very short life span.

It sounds to me as though they'd rather not deal with all those unknown issues and complications.

It reminds me of hearing about how doctors initially recommended hospice instead of surgery for my grandmother, who at age 80, had a pretty advanced case of colon cancer. Part of their recommendation was tied to her age, and their experience that older patients in her stage either did not survive the operation or did not live long after.  They did, however, listen to her family and agree to try the surgery. Well, by day 2, that lady was walking the floor with her IV pole, doing laps. She had contests with her adult grandchildren to see who could blow her balls higher in her Mediciser and joking with the nurses. The surgeons later told the family she changed their perception of elder care and surgery recommendations.

It reminds me of how I've had to advocate for my son several times in a medical environment - precisely because (1) there is so little evidence out there on how to diagnose and treat patient on the Autism Spectrum and (2) Autism presents so uniquely.

We don't know much about Autism -- it's causes and effects on our lives. Many of us have had incomplete or incorrect medical recommendations for ourselves or loved ones. The only way to prepare our medical communities for the coming wave of diagnosed adults on the Autism spectrum is to start creating Evidence-Based Medical Practices and Guidelines for Autism patients NOW.

If you want to do more, there is an online petition being circulated online to Penn Cardiac Care at Radnor to put Mr. Corby on their transplant list -- please review and sign if you support this cause.

If you are an Autism parent -- keep advocating! Get second opinions. Support each other and help our communities to, in turn, support our kids on the spectrum. My thoughts and prayers are with Paul Corby and his family. I can only imagine the frustration and stress they must be going through. It is my hope that he and his family receive the services needed at either the Mayo Clinic, where they are seeking a second opinion, or Penn Cardiac Care.

(Thanks to Shelley at unlocking doors for her informative post on this.)

Tuesday, August 07, 2012

Tackle It Tuesday: New Seat

Disclosure: I hate dealing with toilets. Too many have malfunctioned in my past and I view them with extreme trepidation. This explains, in part, why a brand-new toilet seat sat unused in its box for a good 8 months.

However, this recently changed. In a flutter of nervous activity, and extreme embarrassment that our old seat, which, while cushy and resplendent with butterflies on the lid, presented a cracked and scratchy experience to all users, I forged ahead to change out the lid.

Now if I am attempting something for the first time, I dither too much and worry I am not going to do it the PERFECT way and/or destroy that which I am trying to do. This is where Google and self-helpers online save me. I entered "how do I change a toilet lid?" into Google's search field and voila!
Folks, it doesn't get much easier than this.

Here are the simple steps it took to upgrade our bathroom experience:
Pop the screw covers with my fingers and use wrench to start loosening the screws with the raised tabs.
Fare the well, beautiful butterflies!

Screws removed. I used the wrench on top, and then my fingers above and below the head of the screw.
I then removed the toilet and screws.

New lid. different seat/lid combo, or I would have preserved the original butterfly lid.
The tabs on the screw heads were indented, so I used a screwdriver and my fingers (to tighten the washer underneath).

Fini: smooth, yet boring toilet seat & lid.

I was so proud and excited! I did it - I vanquished my fear of toilets and made a good improvement. The kids, however, assured me they liked the other seat better. It went "whoosh" when you dropped onto it, and it was not hard and cold, like the new one.

I told them they were welcome to find and buy a new toilet seat, and I would then install it. They've been more appreciative.

What did you tackle and accomplish? Do you need some encouragement or inspiration to tackle a project? Check out on Tackle It Tuesday over at 5 Minutes for Mom. They have a great post this week about preparing for a garage sale. I am taking notes, as we need to do that too.

Tackle It Tuesday Meme