Summer's Last Heat Wave

Temps rose again recently. We were in the 90s yesterday. After a very overcast morning, the last day of summer finds us at 84 degrees, just before dinner.

I would love to take James swimming at the pool. Alas, James and swimming are no longer the friends they used to be. He used to like splashing in a public pool, jumping off the side into my sarms and letting me tow him around to kick his feet.

Now he is tall enough to walk the pool and never get his head wet. A few times a year I can coax him in, when there's minimal pool activity. Getting him out can take 20 minutes.

I am glad that I signed James up for swim lessons when he was younger. He loves splashing in the local river and I think a balance between wanting to play in the water and having some history that makes him confident (but not too much so) around water is a very good thing.

I just wish he'd enjoy spending some recreational time in the swim pool again.

Saturday Morning Life Snippet

James and I both slept in this morning. Yesterday was ... um challenging. TWO car fails. School bus fu. Work. It was looking for a while that my planned evening out in SF to attend a reunion of the KFOG morning show was going to go down in flames too.

But thanks to some awesome co-workers and my mom, who is awesome too ... plus a good mechanic and respite person with strangely absent traffic ALL the way down to West Oakland (not even on 80 in Berkeley, and I can't remember the last time that happened at 5:30 PM on a weekday) and insane luck of someone pulling out of a parking space in front of me as soon as I entered the BART lot ... I made it! And it was so much fun. I flagged my first Lyft ride and shared with two other Fogheads, who immediately felt like old friends.

Photo courtesy of Renee and Irish Greg's PopUP

So this morning, I am enjoying being where I am. I played with the cat, made scones, watered the plants, sat in the sun with my morning coffee and enjoyed it being the weekend, which includes chatting with James when he got up. He is puzzled at this thing called 10@10, which is grooving from my laptop, but willing to humour me. It's fun to remember who I was and to be a bit of the person again with James. It's fun to remember a time when life was easier and bring that a bit into the present.

Autism in Numbers

For myself, autism is 90% slog, 10% elation at breakthroughs and successes, at least 25% heartbreak with setbacks, 62% facing how my child cannot interact with his world, 110% trying to figure out how he can engage with and be part of the world around him in a way that makes his life meaningful.

It's 5,642% paperwork. 9,000% questionnaires. $$$ in endless unimaginable extra expenses (large and small) to cope with the disabilities. Paper filing to the 43rd power. The square root of 223% normal life for me. Advocacy into the infrared spectrum of colour.

Underneath and running through it all: love, tears, humour. Music, weird things being said, car rides, obsessions over flies and leaf blowers. Serious campaigns for eating, self care, and impulse control. Mean people, nice people, and YouTube. Higher numbers of kids diagnosed. Reduced financial numbers in state and federal budgets.

This has been brought to you by a tough morning after several brilliant days at the new school that suddenly devolved into self-injury. I am not precisely sure why he decided banging his head on the floor was necessary. We have talked, and hopefully this has been helpful for him. I want to hold him in a hug and make whatever caused it to go away. But he's not that little any more. Instead, I try for calm, work with him and his team, and love him hard.

We've had 2 TBS liquid ibuprofen, 7 crescent rolls, 2 glasses of milk and 1 waffle. Today is a percentage of compromises: 30% school, 70% home rest, and 100% let's try again and make better choices.

Developing Stories

Yesterday, James asked me where he would move to and what he would be doing when he grew up. This is the first time I have heard him talk like this and instigate a conversation like this. It is rather exciting for us both to start talking about it. I said he had time to think about it and come up with some plans. I also said he would have a home with me until he is ready.

Because we are looking again at moving. Costs of living are so out of alignment with what salaries are that even renting it too expensive. I'd rather take what money I'd funnel into covering my rent gap into a sustainable living situation. For a while I didn't see how it could happen.

Yesterday I got some good news that I am getting closer to making it happen. For a rare few hours, James and I were both blissfully and completely happy.

And that's okay.

James has been testing the hell out of the new school. I am so happy he is there because not once have they called to have me pick him up. They deal with the situation and are working on gaining James' trust. The messages I get back all consistently state that James is in the right place, they think he's a great kid, and they look forward to having him at their school. Some days it just makes me cry happy tears.

Meanwhile, we've paused ABA because, after a while of it helping, things got stuck in a rut and James started rebelling. He still refuses to bathe and has taken to trying to communicate via humming, because he's afraid if he opens his mouth, hair, or ash, or a bug will get inside. For those same reasons, he resists eating. He is almost 5' 11", so this is not great. A more stable home could help with those anxieties.

Moving is also a goal because the apartments are rough on James. He hates the noise and cursing that comes from the complex's swimming pool outside. And since he got caught in a rock fight some kids were having at the complex a while back, he no longer wants to go outside and walk around.

More as these stories develop ...

ABA again today. They are talking about creating a video on YouTube. It's going to be a music countdown of his favourite songs.

James is giving him all American folk music songs: Polly Wolly Doodle, Shoo Fly Don't Bother Me, and Clementine. I love the fact that he is naming these songs.

I know they are not age-appropriate. Most 14 year olds want to seem as cool and mature as possible.

James is still grooving to his favourite songs, however. He is humming them as he makes himself some frozen waffle snacks. I love hearing him do this.

ESY Wrap

The Extended School Year (ESY), or summer school, as we old-timers knew it, finished up last Friday. It was supposed to be a fun carnival day. Supposed to be. Not so much for James. I am guessing the noise made him ... well, cranky.

For myself, I was looking forward to an unexpected day off from work by taking care of some household chores, going to the gym, and visiting a local winery. You know, like a grown up in the wine country during the summer. I headed off some stress by taking James to school. I could tell it was probably not going to be the best day but crossed my fingers, like most autism parents do.

I nailed the chores (putting laundry away, cleaning bathrooms and the kitchen in blissful solitude) and got in my swimming workout. I hesitated about going back home for lunch but kept to my daydream of visiting a local winery.

So I headed north on a beautiful day. Preston Farm and Winery did not disappoint. I sat down at a little cafe table under the trees, closed my eyes, and listed to the wind whisper the leaves of the overhead trees and the visiting families. And breathed. And relaxed. The garden was glorious.

I took a windy little country road back, windows rolled down (which I cannot do with James in the car) and... happy. Completely, in-the-moment happy.

Which is good, because as I pulled into the parking lot of my complex, the phone rang. The school was so sorry to bother me, but James had eloped into the nearby performance venue's upper bathrooms and was not coming out. Might I be available to pick him up early. "I'm on my way," I replied, turning the car back out to the road. I know this drill. At least I had a great morning.

"One moment," I was told. Hold music ensued for a couple of minutes. I kept driving. Thank goodness we live close by, I was thinking.

Then something different happened. The office had checked with James' teacher, and they thought they could get him back to the classroom by themselves. They actually preferred to try that. I asked if I could just come early and wait in the office. Sure thing, they replied.

When I arrived, everyone was calm. I got to talking with another mom, who asked me some friendly, relaxed getting to know you questions. She assured me that all the parents have their stories of how they struggled to get their kids into this new school. She shared how this was the best place for her child and that "everyone here will tell you the same thing." As she headed out to pick up her son, she waved and said she was looking forward to getting to know each other next year.

I cannot remember the last time something like this happened. It felt really good, after I got over being a little stunned.

James was in a testing mood: paper stuck in his mouth, rambling all over the office, and walking outside the office and looking in the window at me right after I asked him to stay in the office so I could chat with his teacher. His teacher still radiated positive energy and described the elopement and how they got him back (by letting him spot them, turning and walking slowly away. Stopping, repeating, until he was back in the classroom).

She said overall she could tell the day was hard and she appreciated him trying to participate before eloping. She said she was looking forward to having him in her class next year and hoped we'd have a good summer. She did an amazing job of letting me know what happened while making me feel it was just part of a regular day. I feel like she really understood - the behaviours, and most importantly, James. It was such a different experience from public school. Even when they people were nice, I left with James feeling tense, like we were constantly being caught out wrong.

"Did you get the invite?" she asked. No? Evidently, one of James' new classmates had parents who were throwing a pool party to celebrate summer. The teacher emailed me the invite. James was invited to a party by a classmate. The closest we'd ever experienced was when his second grade teacher had her end of the year party for everyone in her backyard.

This new school is feeling pretty damned good already. Feeling really grateful. And a part of something good.

ABA While on Vacay

We took a brief break from Applied Behavioural Analysis (ABA) the last few days of school. I spent about as much time calming down James afterward as he spent doing ABA. It was not worth the crying and further reduction in eating. Plus, I was getting no sleep and James was not happy next day at school.

Now, however, it is summer, and James can start back up again. We are back at our local Starbucks, because it has WiFi (which allows for the iPad to be used for his checklist and reward games of Angry Birds) and gets him out of the house (so he is not in his room all day or feels like he's being cornered in his own home).

There are some nice conversations going on right now, while James periodically gets up and wanders about. I am really hoping James settles down, over the course of a the next few weeks, and starts working on some of the self care and organizational goals.

In case you are wondering, here is a nice article that talks about ABA services and how they can be helpful to an individual who is autistic and their caregivers (usually family members).

I like being able to go in to work earlier and then having a break before ABA starts. I am getting some summer vacation too.