Overheard in the Wolfe House #35

Sam [just home from the football game]: Hungry, hungry, gotta have some pizza.
opens refrigerator
Sam: Wow, giant slices. Makes me think of South Carolina.

Making Good Decisions

(The short version of last month's blog posts)

Parents make decisions about or for their children every day. But parents of kids with special needs often make decisions about their children’s treatment and education long after other kids are well down the road of self-determination. Those decisions, therefore, can have far-reaching effects on a child’s quality of life.

Parents should give some thought to how they make decisions and whether they bring hazardous attitudes or fallacious thinking to the process. With that awareness, these six guideposts can help parents make thoughtful and ethical decisions – and create the best chance for success.

Guidepost 1 – The quality of information affects your decision making
Know what resources are available to you and how to evaluate them. You have rights and responsibilities in gathering and evaluating information – exercise them, because getting the most robust information is the foundation for every other guidepost.

Guidepost 2 -- People’s skills and expertise effects decisions and quality of life
If you know the ethical guidelines for the professionals in your child's life, it helps you recognize if a treatment protocol or interaction is on the edge.

Guidepost 3 – Good decisions depend on the quality of social interactions
When the professionals speak with you, they will use accurate terms and descriptions and the intent and impact of their words will be clear and effective. We parents have responsibility to be an effective member of the entire caregiving team -- and, to the best of our ability, solve problems in a positive way.

Guidepost 4 -- Family preservation will affect quality life
Most of us are dealing with something that lasts a lifetime, not a few years. Decisions need to keep in mind that this is about the rest of your life, your child's life, and your family's life.

Guidepost 5 -- Treatment procedure selection will affect quality of life
A treatment choice should have the most constructive, and least restrictive, impact on your child's life. Make sure you are thinking long-term, with whole-life considerations. Therapists don't always think 20 years down the road, the way we parents do.

Guidepost 6 -- Ethical treatment decisions are readily accountable
For many providers, that means "do good and take data." For parents, that means a good treatment program with a well-trained provider is going to have some measures that you can see and understand.

The best humble pie

Last night, I shed some major baggage thanks to Sam. We'd spent a long day helping out at a community event. He wanted to say good-bye to one of the organizers because "she's a very nice lady."

She's also very pretty. Sam, like any red-blooded fellow, likes a pretty woman. I teased her husband just a little bit.

"Watch out," I said.

There was an awkward pause, and then Sam said, "He doesn't need to watch out."

Oh, don't even bother cutting up the crow, just hand it over and I'll stuff it in there with my foot.

All of my children are gentle souls who have a great deal of respect for personal boundaries. Unlike their father, who was a gentle soul, too, but struggled mightily to keep boundaries where they belong.

I learned last night I don't own their father's errors. Not in the least. In fact, I don't need to watch out at all.

Resources for Parents Conference

For minimal travel, and a low cost ($10 includes lunch), to this new conference in Fort Worth, you can get a more information and help than you would at a resource fair, but without the time demands of a major, all-day, or multi-day event far away.

Here's the schedule.

And in the spirit, I'd better figure out how to trim a 90-minute talk (which was already trimmed from a half-day presentation) to a half-hour ...

Overheard in the Wolfe House #34

Peggy: Sam do you have a hole in your work shoes? Do you need new shoes?
Sam: Yes. (pauses) How did you know?
Peggy: I saw your blackened socks on the floor in the laundry room.
Sam (laughing): Yes, I need new shoes.

Overheard in the Wolfe House #33

Sam: What are you doing tomorrow?
Peggy: During the day -- not much.
Sam: I get home from work at 2:30. What will you be doing then?
Peggy: Probably outside working in the yard.
Sam: I want to show you Reality Check.
Peggy: Okay.
Sam: It's time. It's time to make my major official.

The "Empathy Deficit" fallacy

At the risk of falling to the theory of self-reference, I've always been skeptical that people with autism lack empathy. I've just never seen that deficit in Sam, nor in any other people with autism or Asperger's that I've met.

I got to thinking about that after reading this piece in the Boston Globe, which goes to some length to describe how our kids apparently are lacking it.

Empathy, by definition, means some kind of emotional response to the pain or suffering of another. Babies and children don't always demonstrate their empathy the way adults do -- that's part of our socialization -- but they feel it just the same.

My guess is that some of us not on the spectrum look for empathy to be demonstrated in a tangible way. Then when we don't see it, we say "a-ha, that person with autism lacks empathy."

The Boston Globe article even spelled that out with a list of tasks an empathetic person is more likely to do. Most of them, I could imagine Sam doing, but not always for purely empathetic reasons.

For example, "return incorrect change to a cashier" could also be following the rules and keeping things correct.

The next two, "let someone else ahead of them in line" and "carry a stranger’s belongings" requires a person to break a social rule about getting into another person's personal space. Sam does this all the time at Albertsons because he is a courtesy clerk and it's expected of him. I've seen it generalize.

"Give money to a homeless person," "volunteer," "donate to a charity," check, check and check. In fact, we talk about picking our charitable causes with purpose.

"Look after a friend’s pet or plant," been there, done that.

"Live on a vegetarian die." Sorry, we're in Texas and he's meat-eater. But butchering day comes with much reverence. We all know where our food comes from.

Sometimes I think we overreact to perceived deficits.

Sam doesn't hug me. I don't ask for it. Here's why. The few times we do hug, there is so much human connection, I can almost feel the nuclear fission begin. Better not to disturb the universe like that.

Overheard in the Wolfe House #32

(as we serve up our first-ever batch of ebelskivers, Danish filled pancakes)

Paige: Do you want some Sam?
Sam: No, I've tried one before. I don't like the filling.
Paige: When have you ever had an ebelskiver?
Sam: In the past.

Overheard in the Wolfe House #31

Peggy: How was school today?
Paige (eyes rolling): pfbbbt ...
Sam: Sounds like it wasn't too good.

Corpus Christi Report

I love the mind-meld that happens when everyone whose been in the trenches talks amongst themselves, as just happened last weekend at the Texas State Autism Conference. Great things can happen when everyone not only comes together and keeps together, but also works together.

There is a lot of work to be done for kids that are transitioning to colleges and the work force, but we'll get there.

Perhaps the crisp blue skies, white clouds, and fresh, sweet air got to my head, but I think all things are possible again.

Overheard in the Wolfe House #30

Sam: I'm putting a picture of Tiger on my Facebook page.
Peggy: Oh, yeah?
Sam: I hope people like it.
Peggy: I'm sure they will. People like pictures of pets.
Sam: Cats never look happy in their pictures.

Shoot the moon

Despite being institutionalized briefly as a toddler, autism's first child, Donald Triplett, survived and thrived because his parents brought him back home to Forest, Miss.

From his school chums to his golfing buddies, Donald's community accepts his strengths and helps protect him from people with dubious intentions.

It doesn't just take a village. It takes a village with soul.

Forgotten stories of autism

The Atlantic has a fantastic story about Donald Triplett, the first person to be diagnosed with autism. The authors, John Donvan, perhaps more famously known as an ABC Nightline correspondent and Caren Zucker, a television producer and mother of a teen with autism, got the story as part of a collection they are working on for a new book.

The story shows us how Donald became to be diagnosed, what his early life was like, how he enjoys his twilight years -- golfing, as any well-heeled gentleman might spend his retirement -- and how he's living as an accepted member of his hometown, Forest, Miss.

The authors sought out an expert in adults with autism to flesh out their story -- kind of a rare breed. One thing that Peter Gerhardt, developer of an adolescence-to-adulthood program at the McCarton School, said, resonated with me:

"People want to treat these adults [with autism] like little kids in big bodies. They can't. They're adults."

Here, here.

"It's having friends It's having interesting work. It's having something you want. It's all the things the rest of us value, once given an opportunity."

Overheard in the Wolfe House #29

Peggy: Sam, would you vacuum the wood and the tile before you leave for work today?
Sam: Today is an on-demand day.

Overheard in the Wolfe House #28

Sam: It's Oct. 1. Have you downloaded your bank statement yet?
Peggy: Oh, no, not yet.
Sam: Are you all caught up on Quicken yet?
Peggy: Oh, no, I'm behind.
Sam: I'm all caught up on Microsoft Money, checking, savings ...
Peggy: Way to go, Sam. High Five.
(Sam hits Peggy's hand on both sides, then sandwiches them and shakes.)
Peggy: Ok, well shake hands then.
Sam: It's uncommon to shake hands in our family.