Thursday, April 02, 2015

World Autism Day 2015

This is my seventh year of participating in World Autism Awareness Day. It's been over seven years since our son was officially diagnosed with Autistic Spectrum Disorder (ASD), about a year after I started worrying something might be going awry with our son's development.

The last year or two have been especially wearing: special meetings, constantly out-thinking the Box, the Man, the big A, the System, the Specialists, the Bureaucracies ... the economy (and our income) taking a nose dive ... serious health issues from all sides that just keep coming ... and being an older parent to begin with. It's all starting to tell on us.

Dealing with Autism, it's a Life Journey. We all have them, true. This Life Journey with Autism is intense and unrelenting. I just have to think about the top struggle recently to get our son to deal with the literal ins and outs of eating recently that had gone from okay to life-threatening over the course of a few short months. How to balance that constant worry and focus with the other parts of life and other family members.

It makes the little things in life so important.

Its so easy to get caught up in the iPhone, iPads, hair styles, and movies. The vacations, the selfies, the food photos in social media (raising my virtual hand here) ... they are fun, and fun is needed in life.

The little things ... rare quiet moments of connecting with loved ones and good friends - in spite of everything tough. That is an achievement. Something to savour. Ten quiet minutes in the garden. Watching your child succeed against all odds - not in a 4.1 kind of way, either. Reading a book on their own. Exploring their world with enthusiasm and confidence. Completing an assignment on their own with their class. Being handed a dandelion to wish on. Having your sleep invaded because someone had a bad dream and can't let go until they curl up with you for a bit. Funny random songs and dances. Hugs, when I least expect it and totally need it.

They are all still there and possible.

Have courage. Have hope. Consider the little things. Consider others, with a more open mind.

Our world can sure use it.

Thursday, February 19, 2015

Rise and Field Trip

Guess who got me up at 5am?

It's Field Trip Day. James, his 4th grade class and I are headed to the Lawrence Hall of Science, a little over 60 miles away from us. So we do need to be up early, but not *this* early.

We did have some talking time on the sofa, over his breakfast of blueberry waffles and milk. I tried to do a social story for where we are going, but I haven't been inside the LHS for years. Decades, even. We lived about 10 minutes away and when I was his age it was one of the cool new local places to go check out.

My strongest memories were from the early to mid 70s. I told him about some of the experiments I remembered: the oscilloscope, the ball drop on a spilling plate, a zoetrope. I remember going downstairs to the cafeteria, passing the UC Berkeley radio station and several classrooms. I wonder if any of these will be there still and what we will see today.

Meanwhile, I am coffeeing up, and James has offered to help me take photos.

Tuesday, February 17, 2015

Then, Later That Night ...

Bathroom meltdown horror.

James was refusing food again and could not sit still. Was acting up. So I had him use the bathroom. He knew if he could not produce on his own, he'd be getting an assist from the enema kit.

So he locked the door.

And got panicky and angry. Very vocally. And would not unlock the door.

I could tell his anxiety was on an uptrend and would not be stopping soon. And I was tired.

So I got out the screwdriver and took apart the door knob, because he refused to open the door.

Frenzied screams of anguish and terror happened for about 10 minutes. It felt like forever. He held his part of the door knob in his hand and waved it about furiously. He bellowed very teeneagerish things at me, punctuated with "I HATE you!" and "Sorry, sorry, sorry I yelled, Mother." There was rageful crying. And no poop.

He was trying to make it happen. It hurt *me* to see how much he was trying. All I could do was keep calm. I am going to try and forget all the specifics. In the end, he made 3 mighty efforts and produced a fine specimen.

We both hugged and almost cried with relief it was over, no lie. This time. For now.

The next day he was back to playing and eating. I went to work. I feel like having a little Foggy Morning Breakdown, but it aint' going to happen anytime soon. Onward.

P.S.: Steve: You're a genius. Arrow through the head sounds about right just now.

Sunday, February 15, 2015

More Testing, More Reinforcement

GoAnimate has become the bane of my parental existence. I am not even going to link to it. James has been watching productions of Caillou, Dora, and other benign cartoons that have been spiced up with police action, arrests, and swear words. All of which he gleefully scripts at totally inappropriate times. The breaking point came when he used the swear words during a parental disagreement and then tried to physically get into it, the way the GoAnimate cartoons do.


Result: Time out for rest of evening, no iPad for over a week, and a letter of apology. Plus, several billion conversations around "Why can't I GoAnimate? Where is my iPad? When d I get my iPad? Do they (GoAnimate) not use bad words? Why? What are bad words? Why are they bad? Where is my iPad? Do I get it back? Today?"

Things were elsewise going fairly well ... until I checked on James this morning to find he's using his old white Mac laptop to watch GoAnimate. Guess what else he is going to have to do without for a while?

He is back to watching his DVDs and I am trying to up his writing and unplugged activities. This is working right now, but in another couple years I am sure it's going to be a whole other ball game.

Saturday, February 14, 2015

One Day, You Find Yourself Here

Oh, don't I know it!


Here's to all the mamas and the papas ... everyone who loves with a special kind of love. Happy Valentine's Day to you all!

Inside Resistance to the Outside

Spring is definitely in the air, as of this week. For days I have been indoors at work, occasionally dreaming of outdoor places I'd like to be.

Today was another sunny and warm day. After the morning grocery run and making breakfast and scones, I gathered my sketching things and had the kids pile in the car. Off we went to Preston Vineyards!



At first, James was just bit whiny. He has been off his iPad for going on three days and he is not fond of heat and bright light, but those are lesser evils when compared to a neighbourhood of lawn mowers.

I love Preston because of its peace, old-world charm, and cats. They also have a very nice red wine and bake amazing bread. They hang Polaroids of their chickens in their on-site grocery store, so you can see which chicken laid your eggs. Their organic olive oil is amazing. The grounds also begged to be explored and discovered.


I wandered, bought bread (still warm from the oven), and took pictures. I even sketched. My daughter drifted after the cats and pursued them slowly throughout the gardens. James draped himself over a table and started to complain. It was hot for him. He was bored. I called him over to see if I couldn't help turn it around for him.

James whined even more. "I want to go home. I need new underwear!" I had him sit with me in the shade, in a quiet spot. I talked about exploring. We used our five senses together. I almost got him exploring ... and then he crashed and howled, tugging at his pants in a fashion that would do a plumber proud. Well, I tried. And we did spend some time outside in this glorious weather.

Thursday, February 05, 2015

A Little Night's Sleep

James was up last night again just after midnight, cranky and fussy in the bathroom. These nights were never easy and now a few years on and back to work, I don't bounce back the way I used to.

I did some growling of my own, and got out the Bendryl, for his stuffy nose and wakefulness. He shrieked, which echoes some in the bathroom. He did trade taking the dose for iPad time in the morning.



James then went back to bed and slept for almost six more hours. He awoke in a much more cheerful mood, and I was happy to let him launch Angry Birds at the piggies on his iPad.


How wonderful it is that some good sleep and a new day can be a game changer for the better.