Monday, July 25, 2011

No Brainer

Um ... ya think?

MSNBC has run an article that basically says mothers get more stressed when their children have behavioural disorders. They focus on ADHD, but come on -- your child acts up and all's serene? Not likely, yeah duh.

At least, that was my first thought. Then I thought that hey, maybe someone will see this and possibly take a second look at parents with kids on the spectrum. Because it's all about us, especially at the end of a 14-hour day that saw 130-miles of driving (at increased gas prices), painful copays that further eat at our reduced family income, several hours of appointments with therapists that will give us good insight but sound iffy re: helping our son get more covered services, and repeated meltdowns of both children for assorted reasons.

Oh, and James deciding at the beach, about an hour and a half before his appointments, that he was just going to ignore me and my loud voice and lie down on the wet sand and let the Bay waves wash right over him in his street clothes? Then going boneless when I attempted to physically remove him from the surf? Yeah, I rate that right up there with overly long nightmares about missing trains and running to deliver lost luggage. While my shoes fall off.

That will teach me to not pack a complete backup set of clothes. Ah well, maybe the sandy undies will make him think next time. Yeah, not really counting on that one either.

Anywho, for all you people who've come across this story, there are many parallels, are there not, in parenting and emotional experiences for parents of kids with Autistic Disorder and ADHD? We too operate in "constant vigilance, a high level of energy" when dealing with our children, whether or not they are with us physically. And oh so definitely yes, the CA state and federal budget butcherings to schools and Regional Centers have totally ratcheted up our emotional stress rollercoasters. We are at Defcon 2 and ready to nudge over into Tortured Mode.

Author Dudette, you hesitate to voice an opinion because there are no offical studies done yet on the effects of of state budget cuts on special needs children? Here's all you need: "The effect? I'll tell you the effect! It's pissing me off!" (Who knew that Ghostbusters had so much wisdom?)

Let's see: Less money because I have to quit my job to manage getting services for children + rise in prices + huge cuts in budgets to Regional Center + services being dumped on schools to provide + schools getting less money, their funds raided, and non-repayment of robbed funds + fewer services for our child all way around + way burned out husband + rising costs everywhere + financial institutions getting bailed out for bad behaviour + grandstanding politicians = really pissed off parents who feel like they've been hung out to dry after being as responsible as possible.

I know we're all more stressed these days. I know that not only ADHD and ASD parents are stressing out more and more. Which brings me to this question: What was this article really about?

It almost sounds to me like:
"Oh, parents of kids with special needs are more stressed out that parents of regular needs kids. What a concept. But we'll wait for an official study before we really care."

If this is actually the case, here I am, waving my arms around and yelling:
"Yes! YES, YES, we're REALLY STRESSED already, OK?! Skip the sodding test and help kick some political entropy to lessen the mess. Studying our misery won't help us or our kids as much as sounding out a rally call for change in the way monies are appropriated and services managed in these tough times. Parents and children need some relief and access to services and therapies. If we shut our eyes to this now, it's going to come back and haunt us all years down the road when we have a sizeable percentage of the population who is more dependent for their support because there was a lack of services up front that could have greatly lessened the effects of the disabilities."

Sunday, July 24, 2011

Good Day, Sunshine

James, about 30 seconds after he rolls out of bed:

He's been drawing shapes in colours, and writing their names in black marker. His handwriting is improving, although the letters look more decorative than literal.

Here's what he has to say about his favourite (for now) activity: "I get markers? Oh! Here you are!" (looking at markers in a cupboard door).

Pulls out a chair and squares up to the table: "I sit here and write. I'm BU-sy! Mommy, I'm working."

Work away, little dude. And keep smiling. It makes my morning.

Friday, July 22, 2011

My Autism Team: Winning For Real!

I wanted to give a shout out to a new online community that has been especially designed for those dealing with Autism. It's called My Autism Team and their goal is to help connect parents and families with resources to help those on the Autism Spectrum.

I was lucky enough to participate in brainstorming session and some early site testing. It's now ready for more people to join. Their goal is to have 1000 people enrolled by the end of this weekend.

One of the things I woke up and realized about myself is how isolated I've become, ditching people and work to give my son as much help as possible during his crucial early developmental years. This is an awesome resource, my friends.

Please check them out and pass it on!
My Autism Team

Been a Mighty Long While

Well, let's just say July's been ... interesting.

Finished up a not so great first session of nonpreschool summer school (survived! #Winning!) Managed James during his sister's early evening swim lessons (sometimes Respite Care, sometimes he gets to go to town with a pad of paper and a pen). Celebrated 4th of July. Suffered through ... something. Either this year was my turn to fall victim to some wicked-bad allergies or I caught another sinus cold ... or maybe a little bit of both?

Social experiments both good and bad. Always a bummer, painfully finding out you've grown apart from a long-time friend. Wincing as James kept announcing to his grandmother, during a long-anticipated visit in another state, "I have to go hoooooooooooooome now!" A fabulous first week of summer camp through City Parks and Rec with The Big Kids (including his sister). Playing peek-a-boo with said grandmother from behind her laundry door. Watching both siblings run and play with each other in grassy parks, on the beach, deuling with water balloons, and posing in front of some killer waterfalls.

Wanting to die just a little bit when James bounces up to complete strangers in the store and booms out "Hey! What's you gonna have this like ... it's you?" Then taking a deep breath and prompting "hey, Buddy, can you tell them 'Hello'?" Releasing it when he does with his sweet grin, which makes them smile and say "Hello" back. Smiling in relief when he makes someone laugh with his purposely goofy antics, using a $1 calculator as a side-kick.

Because the back-to-school sales are on, oh yes.

Good visits with friends, who are in synch with me about what's real in life and are rolling with punches of their own. Quiet moments with my children, who are growing so swiftly now. Visits to the library, whose hours will be sharply curtailed starting next month. The calm house at night, cooling slowly from the day's heat. Talks at night with my husband. Morning coffee in the garden, listening to birds, feeling the breeze, and smelling ripening plums and blackberries.

Dealing with sad family things. Hands full of life, that's for sure.

Sunday, July 03, 2011

King of the Day!

...or, The Wonder League: Epilogue

The last weekend in June saw the Wonder League's (Rattlers') last game of their first season in Healdsburg. James has loved each and every game, so we all turned out to see him play. This was lucky because the team was short a few players, so siblings and cousins were welcomed on the field with open arms.

To call watching this "heartwarming" is a severe understatement.

James got his turn at the microphone to help "test-test-test!" and announce the first batter: himself. He squared up to the t-ball stand and whacked a good one. He looked at us to make sure we saw that and then ran gleefully to first base, his buddy (Healdsburg Sunrise Rotarians were on duty this week) at his side. He was having such a good time out there that he had to be reminded to advance the bases and tag the physical square on the ground with his foot. After he ran across home plate he jumped up and down, laughing and flapping both hands.

He yelled encouragement to his sister as she came up to bat. She's never played baseball before, or even wanted to try. The buddies and players helped her have a blast! She needed some help the first time or two around the bases, but then quickly caught on. She even swung at a few pitches while at-bat, which is is a remarkable testament to how this helped her self-confidence.

It was great to see that while James predictably became absorbed in patting the ground with his hands, he also chased after ground balls and knew to throw the ball back to the pitcher. As I watched him pounce on one ball, I broke into a big grin. How much fun he was having!

After the game was over, George, the league's organizer, announced there would be an awards lunch at the community center next door. James insisted on pulling the water coolers over to the hall:

After a great pizza lunch (with cookies and ice cream for dessert), the awards were handed out. George and the Rotarians really went all out to provide some thoughtful, exciting mementos. Each Rattlers player received a trophy, followed by framed photographs of the team and the individual player:

I have to tell you that the woman who took the photos all throughout the season did an amazing job! What did James think? After grinning big time, he hoisted his trophy and crowed "I am King of the Day!!!!!"

So thank you a zillion times, George, Healdsburg Rotarians, and all the Wonder League volunteers. You helped make our guy King of the Day and gave him memories that will last a life time.

If you are interesting in joining the Healdsburg Wonder League next year or interesting in volunteering, please call (707) 433-8477 or email They are hoping to grow for next year!