No Normal Blue Light Bulbs Could Be Found

I went to the hardware store around the corner from the playground to buy a blue light bulb.

It's April, so it's autism awareness month. Even though we're more an autism acceptance family than an autism awareness family, I figured I'd get with the program and light something up blue.

I was hoping for one of those old-fashioned, normal looking light bulbs.

But they didn't have any of those. Instead, they had this extraordinary twisty blue coil. Not even our autism awareness light bulbs are normal around here.

When I got it home, I said to the sweet girl's dad, "Look, I got a blue light bulb for autism awareness month."

"What's a blue light bulb going to do for us?" he asked.

He's got a point there.

A month or so ago a group of autistic people petitioned Google to change their search completion algorithm. Seems that the auto-complete function of a search for "autistic people should" came up with these as the most frequent searches:

When I saw this online – it came to me through my Google news feed on the topic "autism" – I was destroyed. And I was angry. And I was puzzled.

I wondered how anyone – let alone the majority of people doing Google searches – could think this way about my dear girl. About my friends' dear sons. About all of our kids and our friends who are on the spectrum.

Who are these people that think that 2% of the population should be exterminated?  Who are these people typing hate into the syntax of the internet that my girl loves?  I guess we won't know who they are, but we do know they were the majority of folks searching this phrase that month.

Google changed its algorithm – it no longer reflects the majority view. Rather it aims to shape the majority view. This is what it generates today:

And I got a blue light bulb – an energy efficient one, at that.

I don't know what it's going to do for us. I don't know what Google's altered algorithm will do for us either. But it's a start.

In the Wake of Sandy: AutismCares Grants and Support

If your family is struggling in the wake of Hurricane Sandy, please note that AutismCares is providing grants to help financially disadvantaged families to cover costs associated with unplanned expenses that have arisen during the aftermath of Hurricane Sandy.

Families can apply online to be considered for assistance at www.autismcares.org.

Once you set up a login, be sure to select the application AutismCares - Hurricane Sandy.

Financial Support Awards provide financial relief up to $1,000 for individuals with autism spectrum disorders (ASD) and their families to help cover costs associated with critical living expenses such as housing, utilities, car repair, funeral expenses, and other essential items on a case-by-case basis.

Even our family – which I would describe as members of the beleaguered middle classes – qualified for some assistance, so I urge any families affected by both autism and Hurricane Sandy to apply. We're so grateful for their assistance.

The next deadline is December 22nd, and they turn the applications around in about 2 weeks.  It was really fast and such a help.

Believing

Yesterday our girl made me cry.  In a good way, but cry I did.

We were watching the Macy's Thanksgiving Parade on television, and an Army military band came on, she looked up and said, "Wow, Grandpa would love to see that."

"Yes," I said, "he would. And if there is a heaven maybe he's looking on and can see it."

She was thinking about her grandfather, and what he'd like, even though he's been gone in body for nearly four years and in mind for more than a decade. Score one for expanded theory of mind.

We've been very careful about the God thing, and the afterlife thing, and the what happens when you die question. We say we don't know. That people believe in a lot of different things, but that we really just can't know for sure. But regarding Santa, we have been careless.

Our girl believes. In Santa, that is. And it's my fault.

She's 15-years-old, and she still believes in Santa. Over the past four years I have probed gently for an opening to break the news to her, and have never found an occasion to reveal that Santa is a worldwide performance art piece conducted by folks who still wish there were magic in the world in the form of a beneficent old man and his elves. But I have felt that I have been doing her a disservice to continue acting as though there is a Santa as she moves into full-on adolescence.

This morning I proposed to her that this year, since she's a teenager, that we might want to do Christmas differently. That maybe it is time for us to retire Santa and do something else as a family.  I explained that Santa is something that parents do for their kids, and that she's getting to be a grown-up and will want to know how to do if she has kids or works with kids. That it's magic, but it's the magic that parents make for their children because they love them.

She looked at me with utter disbelief.

"What do you mean there is no Santa?  How did that bicycle get in here?  How to you explain the videos?  (We made these Portable North Pole videos for the past two years.) What about the cards he leaves us for the cookies? What about the presents?"

She is furious with me right now.  Her words: "You just ruined the most important holiday of my life. And what do you have to say about the Easter bunny?"

As I started to explain, she said, "Enough of your lies."

But which lies?  The lies that are the truth or the lies that are the story of Santa?

I came from a big family and was very inquisitive -- think little detective syndrome here -- so I learned about Santa early on. I still remember creeping up the ladder to the attic in the house on McCain Street and seeing all the wrapped boxes.  My eyes grew wide and I thought, wow, look what I found!  Christmas!

When I asked my mom about it, she told me that yes, there was no Santa, but to please keep it our secret because my brothers and sister still believed.  I was five.  And I was so excited to be in on the grown-ups' secret. It was thrilling to get to help my little sister and brothers have fun.

For some reason I was too young, or too Catholic, to make the next logic association: if no Santa, then no God?

Our girl is fifteen, and now she feels hoodwinked. Angry. Bereft. And her mom, whom she trusted implicitly, has confessed to being a serial liar, an impersonator, and a forger.

I'm going to break out my bad mom t-shirt and wear it all weekend unless you all have some ideas to save me from the horrible corner I've painted myself into.

How will she ever be able to trust me again?

An Ill Wind That Blows No Good

You know, things have to be pretty horrible for there to be no benefit to anyone.  And even our big wind from Superstorm Sandy did have a couple of good outcomes.

Long lines to vote in a neighbor
church basement.

First and foremost is the possibility that it was Sandy that blew Barack Obama back into office, riding on the wings of the goodwill he spread across the region, where FEMA stepped up fast, however imperfectly.  And the love affair between the President and Governor Chris Christie – well, it made me feel as though there might be hope for something called leadership instead of partisan bickering.

That win might be the biggest gift of Sandy for those of us who'd like our kids to keep their health insurance and who have girls whom we'd like to see grow up with a modicum of control over their reproductive futures.

It was the state of exception created by sheer scale of the losses that made people need to come together, need to rally.  And there is the return, in beautiful force, of Occupy Wall Street in the mutual aid work of Occupy Sandy.

Closer to home, there were the little artworks we made and the way we rallied together, and the gift of seeing a dear, dear old friend from Park Slope who warmed us up with tea and sent us home with bags of batteries and new flashlights.

And then there was how well our girl managed the difficulty of the changes: power out, internet withdrawal, no television – it was like a giant electronic timeout from the universe. Time out is definitely no fun. Instead of the comforting routine of a shower at 9 pm, she had a tepid bath with pot-boiled water.  She was a trooper for two days, but relieved to get to a hotel uptown and get warm, and go online, and use her phone.  Although after two days there, she was desperate to get home.  Luckily we got home. What a relief.

And then, there's our marvelously clean freezer and fridge. You know how it gets. When do you have time – or the desire -- to clean out the fridge? But there's nothing like a giant block of melted, spoiled, and refrozen food to get a person cleaning up.

Before

After

Finally, there was the amazing thing that happened to me last week when I had to call the health insurance company about a claim that they have stalled and balked about. The health insurance company we have has outsourced some specialties to another company to review "medical necessity" on those claims.

Technically the subsidiary company staff is not supposed to talk to members like myself who are pursuing their claims – they're only supposed to talk to the health insurance company or the doctor.

But my doctor's home was without power for 11 days and her office was without phone, fax, or voicemail. This was an exceptional situation. So I was able to intervene and speak with a woman at the medical necessity vetting company who stepped up to help in the most amazing way.

This stranger on the other end of the phone said, I'll help you, I'll definitely help you. I know about disasters – I'll do anything I can to help you.

After an hour on the phone, I knew how to help my doctor document the treatment plan as they needed it and they gave me the okay to fax it from my home since I have a working fax.

Just as we were about to hang up, I said to the woman at the subsidiary medical vetting company – "You said you knew about disasters? Can I ask what you know?"

She said, "Oh I know. When I was a girl I lived in Mexico, in La Paz, and I was in Hurricane Liza. You might remember it. It rained and rained and rained, and they thought the dam was going to overflow and flood the rich neighborhood, so the government blew up the dam and the water flooded down through the poorer neighborhood, my neighborhood, below the dam, all night long.

When I woke up in the morning, I was in a pile of mud and there were corpses all around me.  For three years I had to carry water many blocks in bucks as we rebuilt our house and I stepped on a cactus because I had no shoes. The aid workers gave me tetanus shots, but they made my arms hurt so bad I couldn't bend them when I was carrying the water."

"How old were you?" I asked.

"Ten," she said. "It was 1976, I was ten."

"Oh my god.  I am so sorry that happened to you."

"I'm not sorry," she said. "I would do it again because, I know about disasters. I have compassion because I have lived through this."

It's an ill wind that blows no good is an old English expression.

The Chinese have another saying, more directive, from The Book of Changes, the Confucian oracle to guide to decision making. Work on what's spoiled. 

I think I'm ready to do that.  Fridge and freezer may just be the beginning.

Autism's Edges Meets Rivers Edges

We lasted almost three days in our cold, dark apartment.  No electricity, of course.  No heat, a surprise.  And no cell phone service.

But last night, after a cold grey day, as the gloaming began, we all started to lose it.  Our girl began crying -- I want the power back, I want the power back.  I felt like crying, but bucked up.  Then I decided we had to leave -- get to a hotel.  Get somewhere warm, dry, safe, with lights, and electricity, and internet service.

There's something about the in-between spaces.  Between the river and the land.  Between the day and the night. Here, the river's edge, twelve hours before the storm landed.

We have a back-up phone -- an old copper wire non-electric phone (at heart I am a secret survivalist) -- so last evening, on the edge between day and night, I called a hotel.

And today we are at the hotel. We hope we can stay until the power comes back.  We might not have a room for the whole time.  Because of the Marathon.  Don't ask this New Yorker what she thinks about diverting resources to the Marathon during a period of devastation.

Everyone here seems to be storm refugee. The stories are heartbreaking,  I am sitting in the lobby writing this -- the wifi in the room doesn't work because of all the troubles, and our girl is on the ethernet, catching up on her YouTube programs.

Our last few days involved . . .

Boiling water for bathing and heating the apartment.  Works for the former, not for the latter.

Reading lots of books.

And painting. Both our girl and I were painting.

We have come to know what it means to be on edge. Really at the edges.

We've taken up art therapy at Autism's Edges.

Jaw Dropping Question

Today our girl and I went to the dermatologist.  We're working on that ongoing challenge of adolescent acne.  But what happened in the waiting room was so unexpected that I just have ask you all about it!

I think I saw our girl flirt.  Not sure, but it sure looked like it to me.

This particular office keeps a small frig with bottled water in the waiting room for patients.  I asked my girl if she wanted one and she said sure.

When I handed her the bottle she turned to the 20-something man seated on the couch next to her and said, "Excuse me, do you think you could help me open this?"

The gentleman obliged and she thanked him and someone else had to pull my jaw up from the floor.

Is my girl flirting?  It sure looked that way to me.

Holy bejesus.  A flirting teenager.  Who'd have thought it possible?

Update: At a suitable time I asked our girl about it and she said, and I quote: "Eeek" (eyeroll) "Oh brother." So I must have read this right, no?