Love. Listen/Observe/Read. Act. Repeat.

Sunday, July 31, 2011

Breaking the Other Tape

Credit: National Weather Service, Fort Worth

Brainstorming 101: Fixing the Garage Door

After Sam finished fixing problems that came with the Lion upgrade, he suggested that we tackle the garage door. We have an automatic door opener that works when it wants to.

And it doesn't want to very often.

It's been a great chance to brainstorm solutions. We've watched videos on YouTube. We've called Uncle Matt. We've taken turns trying things and watching the trouble spots to come up with ideas.

And because it's primarily a mechanical system, it seems that each thing we try brings a small reward, whether it's knocking down wasp nests to remove a blocked pathway or lubricating parts to lessen the drag on the motor. Each step brings progress.

Sam has decided that we still have some kind of electrical problem, though. He says because we have to hold the button down for it to open there must be some kind of wear in the wires. I told him I'd like to replace the sensors -- they look like they've just about had the life kicked out of them, they've been bumped and bustled so much -- and he's agreed.

And if that doesn't do the trick, he's going after the wiring.

Saturday, July 30, 2011

Overheard in the Wolfe House #116

Peggy (opening the home office door): Knock, knock. Gus wants to come in and be with you.
Sam: Awwwww, he'll just stink it up.

Thursday, July 28, 2011

Reading Assignment

Before my writing partner, Shahla Alai-Rosales, headed out of town for a few weeks, she left me with a reading assignment. (Once a professor, always a professor, she gave me more than I think I can consume in the time period allotted.)

We are looking for books that could be competition or complementary to the book we are planning to propose to a few specialty publishers -- a book about decision-making for parents and caregivers.

For those of us loving and supporting someone with a disability, those decisions can feel pretty high stakes sometimes. Our kids aren't as resilient if those decisions end up being mistakes. Most of us expect to have some role throughout our child's life in that decision-making, but it's easy to get in the habit of doing more than you should.

(Brief digression: Some years ago, my husband wanted me to take over driving while he tended to some other task in the truck. For some reason, he kept barking out directions and reminders to me -- something he did not normally do. I drove past the on-ramp to the freeway and he asked me why on earth did I miss that. I told him that for the past several minutes he had bossed me around so much he just took my brain away. I wish I could say we laughed then, but I can't, and that is the end of this digression, since I hope my point has been made.)

One of the books is by the Turnbulls, et al., from the University of Kansas. Heavy hitters in the world of disability studies and powerful voices when it comes to parenting and advocating. It's title "Disability and the family: a guide to decisions for adulthood." (1990: Paul H. Brookes Publishing)

The layout looked like other books I had to consume in grad school (unbearably dense), but it belied it's content. It's readable and full of terrific information.

It didn't take long for me to get hung up on a page that spelled out the steps of a decision-making process. And they are:

Defining the problem or need
Evaluating and choosing alternatives
Communicating the decision to others
Taking action
Evaluating the outcome of the action

It's pretty easy for me to imagine Sam being able to define a problem or need in many situations. But there are scores of situations where brainstorming and evaluating alternatives would vex him.

For example, Sam wants to move into an apartment. But we have done some computer searches and I can tell he has no idea how to find a place that's safe, appropriate and economical.

My first apartment choice was an unqualified disaster. My roommate moved in three months earlier than me, enough time to set up patterns for her cats to urinate on the carpet (the odor made your eyes water) and to leave dirty dishes long enough that the roaches swarmed as soon as the lights were turned out.

I complained. She made some changes, but ultimately I couldn't get out of there fast enough.

The next place wasn't much better. A firetrap on the second floor, with a neighbor who cooked on his hibachi at the top of the stairs every evening.

The next place after that was a house I shared with two other girls. It was a lot better, but not without its inequities. I allowed them in order to get along.

It helps to know what to think about. He'll need more help than the admonition I could get away with making to my other kids, "don't make the mistakes I made."

Wednesday, July 27, 2011

Out Like a Lion

Sam got sidetracked with his plans to write an app for iPhone that restores some contact-sorting features he used to have on his Nokia.

Sam works on an old Dell a dear friend gave us, so any app work is going to happen on my Mac. He started amassing the resources he needed and then came to me to say the final step was this: we need to upgrade to Lion OS.

I consented to this upgrade without asking probing questions -- completely, utterly stupid on my part.

Ever since I got my first Mac in 1988 and we made the leap to System 7, I've known it's never simple. System upgrades are like taking off down the autobahn without tying down a bunch of your stuff in the back of the pick-up.

(My mind is in funny loop just now, imagining pick-up trucks on the autobahn racing past Benzes and Beemers.)

What flew out of the Wolfe family pick-up, you ask?

All my financial records (yes, Intuit let the weenies rule over Quicken). Sam's amazing fixes for our family computer network -- including a peripheral switch for our printer and our portable back-up drive. The entire Microsoft Office suite.

I sooooo knew better.

Major backtracking today.

But I'm proud of Sam. He downloaded Open Office. That's fixed. And knowing Sam, we'll be true contributors to the community.

Then, we pulled the Quicken data off portable back-up and he's going to use Paige's laptop to help me convert to iBank. That should be fixed tomorrow.

Right now, he's writing the manufacturers of that peripheral equipment and asking for patches.

See Sam Go.

Tuesday, July 26, 2011

Anesthesia and the Incredible Likeness of Your Being

I just brought Paige home from the dentist where she had all four of her wisdom teeth extracted. I've been through this enough -- with Mark and the boys and myself -- to know what to expect.

Paige, always thinking, rarely speaking, has yet to say a word, but we're communicating. That includes her throwing a hand signal to make sure I didn't forget about the construction detour on the way home. (I almost did.)

Michael, always questioning, came out of anesthesia with a 10-second loop of memory. He looked at me and asked, "Is it over? That wasn't too bad. How do I look?" Before I could answer the second question, he came again. "Is it over? That wasn't too bad. How do I look?" I squeezed his arm and tried to get to that second question again when he looked up at me the same way for the third time. "Is it over? That wasn't too bad. How do I look?"

The nurse said, "That's pretty common. He'll get his memory back."

Mark had a tougher time of it. Like most of his life, everything came with complications. When I've been under, all I do is sleep and puke. I have to purge before I can get on with my life. But when I do, it's a brand new day.

Sam becomes his essential self, too. When he wakes up from anesthesia, his big brown eyes turn into holes of the universe, just like when he was a baby, and if you let yourself fall in, it's love and terror all in one.

Sunday, July 24, 2011

Overheard in the Wolfe House #115

Peggy: With all the traveling and time out of the house I've had, I've missed you.
Sam: Well, get used to it.

Friday, July 22, 2011

Expert Consultation Coming

I hope.

The ARC sent me a link to a website that is supposed provide self-help for adults with autism in the work force, called JobTIPS.

I asked Sam to take a look at it. Some of the pages are about interacting with the supervisor and how to keep a job, so it applies.

I think it looks good and the information is helpful, and clearly presented.

He said he'd take a look at it this weekend and let me know what he thought -- I'm hoping to blog it.

Stay tuned.

Thursday, July 21, 2011

Overheard in the Wolfe House #114

Peggy (after a three-day trip to University of Iowa with Paige): So what was your favorite part of being a bachelor this week?
Sam: Running the lawn mower.

Saturday, July 16, 2011

See Sam Fly

Sam hopped on a plane and flew to Salt Lake City to stay with my sister and her family.

Within minutes after his arrival, he sent me a text about how beautiful the weather was.

(Yeah, just rub that one in there, buddy.)

This is Sam's second trip to Utah and about his sixth or seventh time to fly on his own. I don't need to accompany him to the gate anymore, nor does anyone need to meet him there like we did when he first flew on his own.

I did not do a single thing to help him pack, not a prompt about the web check-in or anything. When we got to the airport, I asked him, "do you want to hop out at the curb or do you need me to come in?"

He asked me to come in and stay until he was got in the security line.

But he thought about it for a minute. He really did.

Sunday, July 10, 2011

Love Letter to JK Rowling

My daughter and I have tickets to opening night of the final installment of Harry Potter Thursday. The kids have gone on opening night before; this will be a first for me. We'll see part one and part two back to back. It seemed right to do it. Paige, my youngest, heads off to college this fall.

I don't know how my kids would have grown up without being able to do it alongside Harry Potter. Ours is a happy house, overall, one that often looks like the Weasley's burrow, although my clock doesn't keep very good track of the kids and I must wash dishes myself.

But their world has become a dark and scary place more than once, and there were times it seemed only the wisdom in those pages got them through.

When love didn't go as planned, there was Harry and Ginny, and Ron and Hermoine, to remind them that respect and friendship comes first.

After their father died suddenly -- and they felt all alone knowing that no one else in their world knew what they knew -- along came Luna, who reassured them that she sees the thestrals, too.

And when the mother-of-all-battles came home to burn the burrow and destroy the school, they recognized how to sort the world into the truly courageous and those who can only feign bravery.

I doubt, actually, I could have communicated to Sam what is needed to get through the next few years without those final chapters.

Thank you, J.K. Rowling, for being there for my kids when all I had left to offer was the wisdom of the best coming-of-age story ever told.

Thursday, July 7, 2011


With the upgrade to iPhones, Sam and I can now text each other. I've watched Sam play with spelling and language on Facebook and knew that he could handle some communication shortcuts. I've watched him use some numbers in place of letters. I was curious what our first crash-and-burn would be like texting.

Our first crash and burn came from the auto-correct.

Me: "Maybe charge the tractor when you fervor from work and let's try to start it again tonight."

When I pressed send, I saw that "fervor" was in place of "get home".

(Awesome guess there, by the way, Mr. Auto-Correct Editor.)

Immediately, I followed that with: "Stupid auto correct. Get home, not fervor."

Within 30 seconds, my phone was ringing.

"Mom, I did not understand your text message AT ALL."

I didn't even try to explain or translate.

"Sam, please just charge the tractor. I'll explain what happened with the text when I get home."

Damn You, Auto Correct.

Overheard in the Wolfe House #113

Peggy: fast, heavy sigh after playing a bunch of wrong notes on the piano
Sam: Bless you. (pauses) Wait, did you sneeze?
Peggy: Nah. But thanks.

Wednesday, July 6, 2011

Overheard in the Wolfe House #112

Peggy: How was work today?
Sam: We tested a circuit board I've been building.
Peggy: And?
Sam: It worked!
Peggy: Alright. So what's it for?
Sam: A scoreboard. Someone is getting a new scoreboard.

Overheard in the Wolfe House #111

Peggy: I packed your lunch again today.
Sam: Oh, thanks. I need to get in that groove.
Peggy: I packed chicken, carrots and blueberries. Is that ok?
Sam: I was afraid to eat the blueberries yesterday. I thought they would poison me.

Tuesday, July 5, 2011

No Surprise Here

Stanford has come out and said the environment is a significant factor in autism causation.

This is not a surprise in the Wolfe house.

At one time, Mark and I hoped that we could be included in a class action suit being filed against those who had polluted on the east side of Sacramento, including Aerojet and Mather AFB. The same law firm that had pursued the hexavalent chromium case against PG&E, the story that become the movie Erin Brockovich, had found a cluster of autism and thyroid disorders there.

The problem for us was, we were living in an apartment complex one street too far west. We couldn't be in the class because we weren't living in the Rancho Cordova zip code when I became pregnant with Sam -- or so the pre-screening went.

I pushed back hard on the legal clerk who interviewed us. Really, just one street over?


I learned that day that science and law are two very different things.

Saturday, July 2, 2011

Overheard in the Wolfe House #110

Sam (belching): I should get all this air up and out now. (pauses). That's better than the air getting out down later.