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

Thursday, December 30, 2010

When Baby Birds Fly

Earlier this week, the boys and I drove to Plano. We checked the route to SMU in Plano.

(We did some other cool stuff, like eat a terrific lunch at Whiskey Cake Kitchen Cafe, and buy some shirting fabric to make Michael two more custom dress shirts ... his mother is his secret tailor.)

But SMU in Plano is home to the place where Sam is hoping to do his internship this spring.

Some dedicated parents and professionals have started nonPareil.institute, a computer workgroup for young adults on the autism spectrum. Sam wants to volunteer as part of a practicum he needs to complete his computer technology certificate at North Central Texas College.

We've been taking this whole thing in baby steps. It has been extraordinarily difficult to find help in searching for an internship for him. First of all, state resources meant to help ... major vacuum there.

The college isn't quite yet set up to assist students like Sam in the search -- in the past, they have had their hands full just managing and approving the opportunities students found for themselves. Hopefully, that will change as the program grows and matures at the Corinth and Flower Mound campuses.

Job fairs at nearby UNT? For UNT students only ... no sharing. I suggest renegotiating boundaries there -- just like they've done with scores of other resources college kids need to succeed.

A friend in the computer business heroically, graciously did a little bit of legwork for us, enough for us to understand that Sam couldn't just walk into the door of a company and offer himself for a computer hardware tech internship. He would have to find out who the vendor was that provided the service and take it from there.

Holy cow. That seemed like asking someone to find out who brings the bagel cart every morning and then finding out if they'll let him arrange the cream cheeses before the carts head out the door every morning.

I think. I don't know. Computer tech isn't my world. My world is "content creation."

But, as luck and Divine Intervention would have it, someone caught a presentation by the nonPareil people at an autism conference and they passed the materials on to me. I shared with NCTC, an advisor at NCTC reached out, and finding the waters warm, on Tuesday, we drove there and walked around the building to get a vibe.

No people vibes, just driving and building vibes.

As I said, baby steps.

That was enough to get Sam pretty jazzed. He called the director and left a message. And applied for a tolltag.

That just about made me weep. I was girding myself for driving him there two times a week. But Sam says, "I can make that drive. I like this area. I could even get an apartment here."

I reminded him that internships don't pay, and the rent at Chez Wolfe can't be beat. Especially at the SO NY Lofts at Tennyson and the Tollway.

Baby steps, son. Baby steps.

Monday, December 27, 2010

Overheard in the Wolfe House #54

[sound of Elvis Presley, A Little Less Conversation, blaring from the computer]
Sam: Oh, no, Mom's dancing.

Saturday, December 25, 2010

Overheard in the Wolfe House #53

[As Sam douses the Christmas roast pork with winter fruits and a port wine reduction on his plate with ketchup]
Michael: Man, Mom, you could cut this roast with a butter knife.
Peggy [blinking back tears]: That's something your dad would have said.

Friday, December 24, 2010

Merry TubaChristmas!



I'm looking at my clock and realizing there's still time to head to Dallas for this wonderful tradition invented by tuba players -- the only musicians who really know how to have fun.

Thursday, December 23, 2010

The timing makes the poison

In 1976, somebody had a good idea: let's protect people from toxic compounds. Then, the law designed to do that got pummeled by the asbestos industry. We've not had the courage, since, to revisit the issue.

Toxicologists used to say, the dose makes the poison. Now that 5 to 15 percent of children have neurodevelopmental disorders -- including autism -- they are learning that the timing makes the poison, too.

The EPA is building a roster of about 200 chemicals that pose the greatest risk to our health.

They aren't getting very far with it.

Why do so many advances we make become the very things that seem to do us in? Why aren't we smart enough to avoid that?

Wednesday, December 22, 2010

Overheard in the Wolfe House #52

Sam (via phone from work at Albertsons): I'm going to be a half-hour late. I just wanted you to know.
Peggy: Oh, ok.
Sam: It just took me that long to go through my voice mail.
Peggy: It did?
Sam: Yes, for the messages you and Michael left. The things to buy.
Peggy: Yes, we kept trying to tell you to not pay attention to the previous message.
Sam: It was a real pile-up, Mom.

Tuesday, December 21, 2010

Overheard in the Wolfe House #51

Peggy (interrupting Sam): uh, hang on, I just burned my fingers.
Sam: Wait - how - on that handle there? (pointing to the Dutch oven sitting on the stove top).
Peggy: Yes, I'm cleaning the oven. I didn't expect it to heat the top of the stove that much.
Sam: Oh, ok, it's not my fault then.

Sunday, December 19, 2010

Overheard in the Wolfe House #50

Sam: My schedule is getting so busy.
Peggy: Do we need to re-print the calendar?
Sam: Yes, I'm getting in demand.

Saturday, December 18, 2010

Always


Mark's can-fix-it talent lives on in Sam, who just repaired the computer printer. Mark's "visualize anything" lives on in Paige, who just caught a connecting flight in Kansas City in her stocking feet. Mark's broad shoulders live on in Michael, who just split the Christmas errand frenzy with me today. Mark's heart lives in mine, forever.

Thursday, December 16, 2010

Overheard in the Wolfe House #49

Peggy (walking in the front door): Christmas presents!
Sam: Uh, better get wrapping.
Peggy: Nope, unwrapping. It was the company Christmas party today ... so what did you find?
Sam: Cocoa, and peppermint bark.
Peggy: Have at it.
Sam: Can you dip the bark in the cocoa?
Peggy: I like the way you think, Sam.

Tuesday, December 14, 2010

Overheard in the Wolfe House #48

Sam (in a stage whisper, as he bounds up the stairs): Noooooooooo
Peggy (fearing for the worst): What's the matter?
Sam: I forgot to brush my teeth.

Monday, December 13, 2010

You always pay

An obscure piece of news -- a story about a doctor winning an award -- caught my eye today.

It wasn't the startling rate of autism, which has increased exponentially since my son, Sam, was diagnosed almost 20 years ago. (It's now 1 in 80).

It wasn't Dr. Philip Landrigan's beautiful characterization about the brain. ("The human brain is capable of doing calculus and writing symphonies and enjoying the beauty of the sunset, but the cost of that is exquisite vulnerability," he said.)

It wasn't that the writer of the article assumed the villain in this unfolding health crises is one or more environmental triggers, though that could ultimately prove to be true.

It was the estimate of how much the U.S. saves each year in health care costs since we removed lead from gasoline: $200 billion.

China thought they could develop like we did, go-go-go, and clean up later. We got away with the "clean up later" model because people didn't know.

But we're still paying for it -- in ways we cannot even measure. Millions born with brains that mean they must struggle more than their fair share, for one. Health care costs that, in a generation, went from affordable to not.

We should never put the responsibility on another generation, hoping technology will catch up. You always pay, one way or another.

Friday, December 10, 2010

Still looking

I spent the past day and a half in Austin. Every time I go, I meet the nicest, smartest, most compassionate people.

The kind of people that wouldn't string out our kids for the sake of politics, the kind of people that wouldn't balance the budget on the most fragile in our state.

But there is a crack in the universe there somewhere, you know, I know it. It's the one where all the other people in Austin apparently are, the ones that make some of the stupidest public policies ever.

I haven't found it yet.

Thursday, December 9, 2010

Angel Voices



When I see my children, all grown or nearly grown, I can scarcely remember them as the babies they were. But every once in a while, I get a rocket shot back, like I did tonight.

Sam was remembering his first experiences with computers as being on video games when he was in elementary school. I reminded him that his very first experience with html was as a three-year-old playing "Cosmic Osmo" on the computer.

As the memory re-lit in him, his face was almost as if he were a toddler again. And back I went.

Timeless.

Christmas is nearly here.

Wednesday, December 8, 2010

Overheard in the Wolfe House #47

Peggy: Paige will be there in time for that grand 70th birthday party you're having.
Peggy's Mom (via Skype): Oh, that's great.
Paige: You're going to be 70? You'll be the same as Gus in dog years.

Monday, December 6, 2010

Overheard in the Wolfe House #46

Peggy: Sam, let's Google robotic floor cleaner and see what we get.
(Sam chooses Scooba)
Peggy: There it is. The washer one.
Sam: $500. What a bargain!

Friday, December 3, 2010

Overheard in the Wolfe House #45

Peggy: There's a billy next door. Looks like they're ready for little goat babies.
Sam: Physical attractiveness is important in all matter of creatures. Insects, and cats.

Merry PianoChristmas


Almost two years ago, I sent my little upright grand for an extreme makeover, Philip Williams-style. Today, I received an e-mail that my old friend is ready to come home.

Let the carols begin.

Thursday, December 2, 2010

Overheard in the Wolfe House #44

Before I pull out my Merry TubaChristmas scarf ...

What is the difference between a government bond and a trumpet player? A government bond eventually matures and starts earning money.


Wednesday, December 1, 2010

Not an adjective

I love playing with language.

For me, reading and trying new word combinations can be as exciting the unexpected deliciousness of eating watermelons and tomatoes together, or layering old favorites from my closet in a new, flattering combination.

But I couldn't muster the stuff for a tech writer who described a tablet-only publication -- as in a newspaper subscription for your iPad with no external links -- as an "autistic app."

Eeeeeuw.

First and foremost, autistic is misused as an adjective. And any editor who let that slide needs a refresher course, not only in English but also in People First language. You show respect when saying "he has autism" instead of "he's autistic." Two steps way back with that.

Here are some reefers to real apps ... just in case you were wondering ...

http://www.modelmekids.com/iphone-app-autism.html
http://www.autismepicenter.com/autism-blog/blog2.php/2010/10/23/autism-apps-that-will-help-you
http://www.gadgetsdna.com/10-revolutionary-ipad-apps-to-help-autistic-children/5522/

Some of them look marvelous and it makes me wonder how we ever made it, hauling around that little crate of vocabulary cards.

Tuesday, November 30, 2010

Harry Potter hits the core

This weekend the kids and I went to see the penultimate movie in the Harry Potter saga.

We are all big fans of the books. When Michael was young, he wanted to dress up like Harry Potter for Halloween -- and some other days, too -- long before the first movie ever came out. I went straight to our local costume shop, Rose's Costume, where owner Judy Smith and her astute crew had already assembled Harry Potter costume kits from old graduation robes, round-framed glasses and brooms to go.

So, Michael, of course, had already seen Harry Potter and the Deathly Hallows Part 1 twice, including a midnight opener, by the time all four of us were able to take it in over the holiday.

Sam had warned me that he thought he might not be able to sit through the most challenging scenes. This was a first. I didn't understand it, until the movie was underway. Even I had to close my eyes during some of those torture and fight scenes. I felt badly that we didn't sit somewhere to make it easier for him to escape, or to have Michael help prepare him.

Sam didn't feel like he could stay put and just look down. I understand that -- the movie theater experience is about going all in with the story. Still, he said he was ok, and he stuck with it the entire film, just in and out for two hours. He said he ought to be able to tolerate it once we have it at home on DVD.

What is it about the big screen that just pushes the story's emotional core right to your own?

Oh, and by the way, if you saw it at Northpark, along with those balony anti-vaccination ads that I've heard were running then, please do all of us in the autism world a favor and complain. What is with these anti-vaccination people?

Sunday, November 28, 2010

Overheard in the Wolfe House #43

(exhausted on Sunday morning, after a marathon weekend hanging Christmas lights)

Sam: Mom, I still can't find those white LEDs I bought. They're not in the truck.
Peggy: (long, rambling mumble about receipts and empty boxes and cleaning up the staging area on the back porch). Wait, Sam, we wrapped them around the metal wreath frame.
Sam: Ok, Mom you just knocked me totally back into my senses.

Wednesday, November 24, 2010

Royalty check

Before anyone thinks you automatically get rich writing books, let's just say my latest royalty check for "See Sam Run" would not quite cover the cost to fill the tank next time I'm at the gas station.

But I was thrilled to see it on the plus side, rather than the other way around (deficit for returns). The book is still selling, which says something.

Plus, I sleep well at night knowing this kind of royalty isn't my take in a zero-sum game.

Tuesday, November 23, 2010

Road trip

I've been experimenting with leaving Sam on his own for a couple of days, just to see how he holds up. Dishes get washed, and animals get fed, house stays clean. He even went to the post office and picked up the mail and collected all the newspapers. This is good.

We shop before I go so that he can cook for himself, but he doesn't. This time, I made a pile of sausage kolaches before I left. That was supposed to be breakfast. He just told me that was pretty much what he ate while we were gone -- he made neither the spaghetti nor the pizza -- both of which he's made many times on his own for family meals.

When your toddler has autism, sometimes it's hard to discern which is which. For example, was that temper tantrum the sign of something that needs to be addressed, or was it just your run-of-the-mill hissy fit?

I feel like I'm right back there again. Do I worry that this is a sign of self-help skills that need shoring up, or is he just being a bachelor?

Thursday, November 18, 2010

Overheard in the Wolfe House #42

Sam: I think it's time to build a fire.
Peggy: You're ready for me to build a fire in the wood stove? First fire of the year.
Sam: Yes, summer is finally over.

Wednesday, November 17, 2010

Best. Autism. Blog. Ever.

Autism News Beat -- bringing together the two things I care about most. Autism. And sound, scientific journalism.

Tuesday, November 16, 2010

Emotional IQ

Sam and I had the most amazing exchange this morning, one that belongs in some kind of magazine about how mature people should deal with powerful emotions.

First, you've got to set a stage for two people completely, utterly and totally misunderstanding each other. We'd both just gotten up -- and neither of us are morning people. Plus, I had had only a sip or two of the morning joe, so that's two strikes against me.

Sam was opening a vitamin jar to get a tablet out and suddenly it just flew from his hand and rolled on the floor. I didn't see any of this. I just heard him yell "OH!" so loud adrenaline rushed to my nerve endings, so full and fast that it hurt my fingertips.

I thought my reaction was amazingly calm, considering. I turned around, puzzled that nothing seemed to be wrong, and said, "Don't yell so loud in the house."

That upset Sam terribly. He left the room.

A few minutes later, he told me that my comment made him feel like a little kid again and brought back bad childhood memories. That brought tears to my eyes. I tried to apologize for the comment, but Sam said we shouldn't talk about it anymore, since it was about to make me cry.

I told him no, please, I welcomed the chance to say I'm sorry not only for hurting his feelings today, but also for any bad childhood memories and we could talk a little more if he wanted.

Sam said he remembered misbehaving, and it was in the past and it could stay in the past. I told him I thought that was very mature.

Then I said, you know, I didn't know why you yelled so loud. I thought I needed to call 911 or something. He explained what happened, I told him I understood now why he yelled, and then he said he understood why I felt like I needed to say something about the yelling.

What Sam brought to the conversation that was so amazing was believing me when I said I loved him and never wanted to hurt him. That was part of my apology. I told him that it's important to me to stick up for myself, and I've noticed that when someone sticks up for themselves, it can be hard to do without hurting the other person sometimes.

The whole conversation took all of 10 minutes and brought me such a sense of wonderment. I'm still trying to figure out where this supposed lack of social understanding comes from in people with autism. Sam is so clear-eyed and clear-headed. His father and I could not have had such a conversation early in our marriage. Even later in our marriage, it would take two hours to wade through all the emotional thicket to get to the same place.

I think it's the opposite. I think the rest of us lack emotional intelligence. We play stupid mental games with each other, and we don't trust each other.

When Sam doesn't trust someone, he just doesn't deal with them at all. How smart is that?

Any girl would be lucky to have him.

Monday, November 15, 2010

Overheard in the Wolfe House #41

(sound of scampering from the front of the wraparound porch to the back)
Peggy: The chicken is chasing the cat.
Sam: The chicken is chasing the cat? Silly goose.

Sunday, November 14, 2010

Overheard in the Wolfe House #40

Sam: I haven't been able to eat peanut-butter-and-jelly for a long time.
Peggy: Really? We have all kinds of them (opening refrigerator to show) -- fig, apricot, pear, lemon. (pause, realizing he doesn't like any of those). I've been meaning to make more raspberry jam.
Sam: I know. But you've been taking a really long time.

Friday, November 12, 2010

Life is full of meetings and partings


Some people do spend their whole lives together.
And some homes are forever homes.

Wednesday, November 10, 2010

Overheard in the Wolfe House #39

(coming soon to an office near you ... hardware tech superman)

Sam: How hard is it to work with MIDI devices?
Peggy: What?
Sam: I figured out how to load the Apple DLS sound font with SimpleSynth.
Peggy: What?

Wisdom matters

There's been chatter among researchers about the benefit of wisdom in their work -- the balancing of your own interests, with the interests of others, and the interests of the community (even God, or the environment).

I think it's kind of funny that the new thing isn't the latest, greatest technique or protocol, but this old thing called wisdom.

Now that I'm 50, of course, I understand the implications much more than when I was a desperate young mom of 27. Creativity matters still, but I've learned to fold other considerations when figuring out what it takes to solve a problem or make progress on a project.

Especially when it comes to supporting my kids as they launch their own lives.

I'm not talking about a "been there, done that" attitude, or excess skepticism, either, but a vigorous way of seeing things fresh, without throwing away all that you've learned so far. There really is no place to stand except on the shoulders of the people who've come before you.

What wisdom can I give Sam and his support team as he makes this transition from school-to-work? Much of that wisdom is already his, perhaps its better for me to help him see it in himself. Really, how is it different than the support Michael needs, or Paige for that matter? Except that Sam might have a little more trouble than most of us at deciphering the social codes of the "job hunt."

I think it's time to pick up a fresh edition of What Color is Your Parachute? and reacquaint myself with that old wisdom.

Monday, November 8, 2010

Sunday, November 7, 2010

Overheard in the Wolfe House #37

Sam: What does that search say? "Bubbly"? That's a funny name for somebody.
Peggy: No, it says Bobby.
Sam: I thought it said "bubbly." It made me think of a Green Day song.
Peggy: Really? Which song is that?

Inch worm

Yesterday, at Walk Now for Autism Speaks, I was able to introduce a lot of people to Texas Parent-to-Parent, and that was very gratifying. More gratifying was that some people had heard of TxP2P already. Our concerted outreach effort is making progress.

Most gratifying was that some people already knew about my book. That wasn't part of the promo package yesterday, but when people would ask about the play-dough, I'd direct them to the recipe (in anticipation of the question I'd already posted it, just a bit lower on this blog) and the book would come up.

Just like raising Sam, progress is made inch by inch.

Thursday, November 4, 2010

More recipes for kid stuff

Two ways to make finger paints:

Mix liquid starch, 1-2 tablespoons soap flakes, and food coloring in a bowl, whip with a beater. Fill small containers with mixture and add more food coloring to brighten.

Mix 3 tablespoons sugar, 1/2 cup cornstarch together and add 2 cups cold water. Cook over low heat, stirring constantly until well blended. Divide among four or five small cups, add drops of food coloring to color and a pinch of detergent to facilitate clean-up.

Wednesday, November 3, 2010

An old family recipe

This week the Wolfe house is busy with the making of play-dough on the stove top. The DFW team for Texas Parent-to-Parent will have a booth at the Autism Speaks Walk this Saturday at the Ballpark in Arlington and we plan on giving the kids at the event a super experience for their senses.

I've dusted off an old family recipe that was a big hit with Sam when he was little. He was consumed with making sense of the world through his challenged senses. We made this dough, and then added a secret ingredient -- a package of unsweetened Kool-Aid to match the color with a flavor "scent." He loved it.

To wit, put these ingredients in a large saucepan and heat over very low heat, stirring constantly, until it's thick:

1 cup flour
1/4 cup salt
2 tablespoons cream of tartar
1 cup water
1 tablespoon oil.

Remove from the heat and as soon as you can work the dough with your hands, make a well in the middle and add 1/2 teaspoon of food coloring to match the Kool-Aid flavor. For example -- purple and grape; green and lime; red and strawberry; yellow and lemon; and, of course, orange orange and blue blueberry.

The dough keeps for a few days in a rubber keeper or airtight bag. Plus, if your little one takes a bite, you don't have to worry about any mystery ingredients.

Tuesday, November 2, 2010

Overheard in the Wolfe House #36

Sam: Let's go vote.
Peggy: You're ready? Ok. Let's go.
Sam: It's the last day.

A better idea

Sometimes we look askance at parents who put their baby's name on a waiting list for a prestigious preschool before they are even born.

As if the path to adult success is really that narrow.

Yet, if your child is born with a lifelong condition that will affect their ability to care for themselves, such as Down's syndrome or autism, parents are encouraged to "guess" what services they might need later in life and put them on a waiting list for services. Those lists, in Texas, are DECADES long.

And recently, Texas created pilot projects for MORE waiting lists for services.

The whole thing is a farce.

Last weekend, at the Njoy Foundation conference, Resources for Parents, I learned about a statewide group that is trying to change the model for Texas. With a bad budget year, they have a mighty, uphill battle.

But it's got to happen. Last year, 53 people died in state institutions of preventable causes, including one person at the Lubbock facility who was suffocated while being restrained. Of course, nearly every one knows about the notorious "fight clubs" organized by some of the staff at the Corpus Christi facility because one of them recorded the fights on a cellphone.

The Department of Justice has been monitoring Texas facilities for rampant civil rights violations.

To learn more about this group that's promoting inclusive communities -- which means the money follows the client rather than the other way around -- visit their website: www.communitynowfreedom.com.

Friday, October 29, 2010

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.

Tuesday, October 26, 2010

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.

Monday, October 25, 2010

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.

Sunday, October 24, 2010

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 ...

Saturday, October 23, 2010

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.

Tuesday, October 19, 2010

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.

Sunday, October 17, 2010

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.

Tuesday, October 12, 2010

Overheard in the Wolfe House #31

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

Sunday, October 10, 2010

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.

Thursday, October 7, 2010

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.

Wednesday, October 6, 2010

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.

Sunday, October 3, 2010

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."

Saturday, October 2, 2010

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.

Friday, October 1, 2010

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.

Thursday, September 30, 2010

Overheard in the Wolfe House #27

Sam: I see you're back on Facebook.
Peggy: Yes (with a slight groan)
Sam: That's great. It brings the world right to you.

Wednesday, September 29, 2010

Imposter syndrome

I have a friend who is wildly successful at what she does, but suffers from imposter syndrome. She's worried someday that she'll be found out, that everyone will see her as she sees herself: an imposter.

I frequently worry about that as a parent. Somehow, I'm certain that the world will look beyond my kid with special needs, and the fact that he's walking and talking and working and happy -- which I attribute far more to God's loving hand than my bumbling efforts -- and see me and my other children and know the truth. I am a lousy mother.

Yet, once in a while, I get a small affirmation about the decisions I make as the mother of my other two children. In today's mail, someone in my other son's life took a moment to say thanks and add the observation that makes every mother's heart sing ... "I respect and admire your ability to let him take the lead with his own destiny -- not an easy thing to do, mom, and not something I see every day."

There you go, Michael. I'm not the best, as moms go, but it's sure better than a stick in the eye.

Always starting at ground level

Sam has asked me several times in the past week how he can search for a job for his coop education credit next semester. That's all that's left between him and graduating from North Central Texas College with a technical degree, and finding a job.

For millions of other parents, this is the part where your child flies. They've laid the foundation in college, made loads of connections, worked with their college placement office, gone to job fairs, sent out resumes, interviewed, and got a job. You just get to sit back and watch the beauty of that butterfly unfold.

Not for kids like Sam. The world doesn't know what to do with his smarts and his expertise because it comes in an unusual package. He is a hard worker, congenial, reliable -- just ask the folks at Albertsons where he's been sacking groceries for the last five years.

We planted a couple of seeds early in the semester, hoping some support for his upcoming job search will take root. But I've traveled this road so many times before.

I know what it's going to take. I've got to stop everything else I'm doing (and as the single working mom of three, running a farm, threatened by the foulest kind of industry next door, it's pretty effin' busy around here) and devote hours and weeks and months of energy to help him get this going.

He deserves it. I want to be able to look at myself in the mirror, but give me a minute to shake my fist at the sky first.

Monday, September 27, 2010

Overheard in the Wolfe House #26

Sam: I'm starting to think I'll never be married.
Peggy: Oh?
Sam: I don't think it's in God's plan for me to meet girls I can date.
Peggy: (stunned silence)

Sunday, September 26, 2010

Overheard in the Wolfe House #25

Sam: Fall is finally here.
Peggy: Yes, it's just beautiful weather today.
Sam: It's Canadian.

Saturday, September 25, 2010

Live, and in person

Members of the DFW Parent-to-Parent team are sharing their wisdom and information about support available through Texas Parent-to-Parent at these upcoming events

Oct. 7-9
Texas State Autism Conference
Corpus Christi
Both Julie Rahn and I speak about parenting issues
autism.esc2.net

Oct. 21
Third Annual Parent Conference
Education Service Center Region 7
1909 N. Longview Street, Kilgore
Julie Rahn speaks about parenting issues
www.esc7.net

Oct. 30
Resources For Parents Conference
Tarleton State University
Fort Worth Campus - Hickman Building
6777 Camp Bowie Boulevard
Julie Rahn and I are speaking about parenting issues ... and we'll have an info table
njoyfoundation.org

Nov. 6
Walk Now for Autism Speaks
Ballpark at Arlington
We'll have an info table, but we're also setting up a homemade play-doh play station for the kids ...
We're making play-doh the way Sam likes it: purple smells like grapes, red like strawberries, etc.

www.walknowforautismspeaks.org

Friday, September 24, 2010

Impulse control

The University of Toronto came out with this beautiful little study about self-talk and impulse control.

All three of my children talk to themselves, not just Sam. However, when he started -- as a tweener -- his impulse control really improved. He likes to pace our wrap-around porch and talk.

I think I'm going to try that self-talk thing the next time I want seconds of pie and see how it works.

Thursday, September 23, 2010

Overheard in the Wolfe House #24

Peggy: So how was school today for everybody?
Sam: uh-hm (still chewing, nods head)
Paige: Fine.
(pause)
Peggy: Well, I did my part. The parent handbook says to ask every day how school was.
Sam: Then you should ask how we like our classes.

Monday, September 20, 2010

Guidepost Six

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 to have some measures that you can see and understand.

Those measurements will be organized, and accessible -- even older data. You should be able to make decisions in a timely way based on the data, too.

Here are some helpful hints from Shahla on evaluating accountability, with my lay-person translation, to help you know what to look for:

1. Operationally defined, observable responses.
Let's say you want to increase positive interactions between your child with autism and a sibling. There has to be a clear list of what's going to be defined as a positive interaction. In some families, for example, roughhousing could be a positive interaction. Make sure you know what is going to be tagged and how it will be counted.

2. Reliable observation systems.
Researchers have actually studied how observation is done, in other words, asking the question, "is this what I would have seen if I had been there?" The best example I know of this is the claim that discrete trial training "recovered" children from their autism. Shahla told me once that she had seen video of the people who had gone through the discrete trial training with Lovaas and she could see the autism was still there. In other words, whatever they measured was a recovered skill, not a recovered person. Each person using the measurement system should be measuring in about the same way.

3. Muti-level observation systems.
Observation tools should handle both comprehensiveness and detail. Is there a tool that is evaluating the organization of the program? Is there a tool evaluating the activities? How about the interaction? For behavior analysts, video has proven to be valuable. For parents, that opportunity helps you see more objectively.

4. Social validity systems.
Look for a measurement system that lets you know whether your child is happy with the efforts and the effects. And maybe you, too.

5. Treatment fidelity systems.
Is someone measuring whether the treatment is being delivered in the manner it was meant to be delivered? There are always practical challenges in delivering a treatment. Measuring systems can ensure those challenges are being addressed.

Sunday, September 19, 2010

Life, richly lived

More thoughts on Guidepost Five ...

Catherine Maurice's legendary tome, Let Me Hear Your Voice, hit the bookstores not long after Sam was diagnosed. Her book brought to life the groundbreaking research that discrete trials, a special kind of teaching by applied behavior analysts, helped kids with autism learn.

The only problem was, to "replicate" it at home, you had to have someone working with your child 40 hours a week on tasks like "give me the red block."

I still roll my eyes at that possibility. Mark and I didn't have that kind of money, first of all. And if we did, there was no one with the proper training to hire. It was still too new. And, most importantly to us, subjecting Sam to 40 hours a week of discrete trial training felt tantamount to abuse.

I'd read Kaufman's book, "Son Rise," too. They locked themselves in the bathroom with their child to effect the same sort of thing at home. We'd recognized there was ethical boundary in a treatment choice, just considering the way both those families tried to deliver what was known to be effective.

I fell into Maria Montessori's method and decided we could approximate the 40-hour-a-week thing by changing our home to be like a Montessori school. Then, we spent every minute that we could with him as he played. In other words, naturalistic teaching. LOTS of naturalistic teaching.

I never logged the hours. But when he started kindergarten, I suddenly didn't know what to do with myself with all these long, free blocks of time. In the end, it was probably more than 40 hours a week, but not one as a discrete trials.

Absolutely, the treatment choice affects your quality of life ...

Friday, September 17, 2010

Overheard in the Wolfe House #23

(actually overheard at the football game)
Sam: Don't eat that!
Connor Bateman: I've eaten a bug before.
Sam: I bet you barfed it right back up. (pauses) And don't make me say that word again.

I would live in your love as the sea-grasses live in the sea ...

.. I follow your soul as it leads.



Mark Wolfe, Sept. 17, 1956 ... miss you baby.

Thursday, September 16, 2010

Guidepost Five

Treatment providers know that good decisions about the treatment procedures selected for your child will affect the quality of life for your child, for you and for your family.

At the top of the checklist for every parent making treatment decisions on behalf of their child is to make sure the treatment has the most constructive, and least restrictive, impact on your child's life. Make sure you are thinking long-term, with those whole-life considerations. Therapists don't always think 20 years down the road, the way we parents do.

We want the best life for our child. As a result, you should actively participate in the planning of any treatment procedure. As your child grows and becomes more aware of the services being provided, start thinking about ways that he/she can participate in the planning as well.

Ask questions about the treatment procedure. How will it be assessed? Look for ongoing measures. What will the evidence be and how will it be evaluated? Look for principled thinking and wisdom, not just the latest-greatest-newest.

Then you can be sure you are giving informed consent.

Wednesday, September 15, 2010

The family way

More thoughts on Guidepost Four ...

One of my worst runs as a parent came when Sam was about 12. Something about puberty turned his world upside down. In some ways, it was as if he was 3 years old again.

As in tantrums.

Over the course of several weeks, he slipped ever deeper into the habit of taking things out on his younger brother. I got between them many times to de-escalate an argument, but Sam wasn't getting the message that his brother was not a punching bag. I took stock of his rages. They were getting worse, not better. Something about it was self-reinforcing -- possibly because Michael would only throw up defensive blocks, he wouldn't fight back. Sam would "win," in other words.

I didn't want to encourage Michael to fight back. Something about that felt wrong, more for Michael than for Sam.

Even though Sam was taller than me, I knew I could get the best of him once or twice, if I needed to keep Michael safe. I would have the element of surprise, but only once or twice, then our relationship would be ruined.

As usual, I was spending too much time thinking about it, but I didn't feel like I was coming up with any decent strategies to fix the situation.

Of course, one afternoon it all came to a head, Sam was throwing a huge tantrum, with Michael as his target, and I knew, if I didn't tackle him right then, Michael would have been hurt. I dove onto my son and pinned him to the floor and yelled at him, "Stop, stop, stop it right now, or you can't live in our house anymore!"

Sam was terrified. He already had tears in his eyes from the tantrum, but now his eyes looked truly wild. It seemed to take forever for him to calm down and for me to feel like I could let him go, but he didn't really resist much either. We tried to talk a little about what I said, but it wasn't a good conversation.

Over time, I saw that he'd gotten the message that he was responsible for his behavior and he was not allowed across that line of physicality. When he got mad, he took his troubles to the porch and paced and talked to himself. The physical tantrums ended. But it cost me a fair amount of his trust for a while.

For several years, he'd occasionally ask about circumstances when someone couldn't live with the family anymore. He was looking for the rules. Were they still the same? Does he still understand them?

I tried to give him the same message each time, essentially, 'you probably don't remember how badly you were hurting Michael, so I was pretty scared when I told you that. But you're older now and you know we just don't do that in the Wolfe family.'

That little mantra "how we do it in the Wolfe family" helped ground all our children and make them feel safe through the tween and teen years. They even put items on the agenda for family meetings that way. They'd articulate a problem, and then Mark and I asked them how they were going to solve it. They often had terrific ideas and the problem stayed solved.

That's how we do it in the Wolfe family.

Tuesday, September 14, 2010

Guidepost Four

Decisions that keep family preservation in mind can positively affect your child's quality life.

That ethical consideration almost seems like a no-brainer until you think about families that have put everything on hold in order to help their child. That kind of self-sacrifice seems noble at first, but on closer examination shows its flaws.

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, your family's life.

Be sure to communicate your unique family values and culture to the caregivers in your life. Give them a chance to honor those and reinforce what is important to your family.

Everyone will have to learn skills to support the child, and figure out ways to include your child in family and community life, while still honoring the needs of the whole family.

As you plan for your family, short and long term goals and procedures need to think about current settings for the family and the community, as well as transition processes for future settings.

Monday, September 13, 2010

We're herd animals

Final thoughts on Guidepost Three ...

About 15 years ago, we had a little trouble with our arrangements for occupational therapy when Sam was in elementary school.

I had managed to find a clinician who knew enough about sensory integration to afford Sam weekly sessions. She was a professor at Texas Woman's University and ran the clinical program for the students. We'd go once a week and Sam's 50-minute session would be led by one of the two students in the practicum, with the professor supervising.

It was a bargain for the school district -- $20 a session -- and Sam enjoyed the time there. It was easy for me to shuttle him there after school, since I worked across town at the University of North Texas. And, most importantly, we saw progress over the months and years he was there (from about age 5-12).

Somewhere along the line the professor and the district's director of special education got crosswise with each other. The special ed director decided it was time to pull the plug on the arrangement. We had a sense there were reasons for the conflict on both sides -- reasons that were never disclosed to us, which to this day still bothers me. The director made arrangements for clinic therapy with another professional in another town, at about four times the price by the way. That was that.

We'd heard of this OT's work. Another parent raved about what her son had accomplished in her care, so we knew the director had put some careful thought into the change.

However, it was not possible for me to shuttle Sam there and back without negatively affecting my work schedule. If we allowed the school to bus him there, they would surely cut into his class time to make it happen.

Most importantly, though, we were concerned that Sam would have to learn to interact with a new person and new routine. That isn't always a bad thing. But we'd just gone through several upheavals with speech therapists and these had cost him months in progress. While he was motivated to learn to talk, OT was another matter. He was, and remains, very defensive about challenging his senses, his balance, his way of moving in time and space. We thought he would lose a year just trying to get to trust this new person.

To this day, I have to ask permission for a hug. I don't always get it.

We refused the change and insisted that the director renew the contract with TWU. The battle lines had been drawn with us, and the school superintendent, and the special ed director.

We sat down to negotiate. The special ed director never gave a compelling reason for the change. The superintendent sided with us.

This is perhaps the best example I have from our family history showing how the quality of social interactions affected decision-making. We couldn't know whether we made the right decision, given that we weren't afforded all the facts. We could only take comfort in knowing that Sam continued to flourish at TWU's OT clinic and has very few sensory integration problems as an adult.

He also enjoys a connection with the professor, who has long since retired and moved to North Carolina.

Don't underestimate the value of those social connections. At our core, we are social beings, much more like cows, horses, goats and other herd animals than the loners, like owls and eagles.

Sunday, September 12, 2010

Overheard in the Wolfe House #22

Uncle Matt: How'd you fall off the horse, Sam?
Sam: I was trying to canter it.
Uncle Matt: You were trying to canter when you fell off?
Sam: Yeah. I fell off because it was a bucking horse.

Interim markers

Even more on Guidepost Three ...

Sometimes it's hard to judge the quality of social interactions. We aren't very good listeners, even when we don't bring a lot of emotional baggage into our conversations.

We make so many decisions on our child's behalf that it's critical they are the most effective and ethical that they can be. Shahla offers a couple of indicators -- interim steps, if you will -- to mark the way and ensure our social interactions are contributing positively to our decision-making:

-- Our child's progress is evident
-- Any problems are addressed directly to the source
-- There is general confidence and esprit de corp
-- High levels of interactions and proximity
-- Everyone - the child, the family, the staff - are generally happy
-- Relationships are maintained

Saturday, September 11, 2010

Heather's help for parents

Thanks to Heather Barahona and Shahla A'lai-Rosales for these eight tips for meeting with professionals. While it's designed for parents, this can work for self-advocacy for adults, too.

1. Prepare
a. Thank the professional
b. State you are willing to actively participate
c. State how your prepared for the meeting

2. Check for Understanding
a. Summarize the professional's report
b. State related observations of your child
c. Ask for feedback from partner (if applicable)

3. Clarify
a. Ask questions or state you have no questions
b. Summarize professional's response

4. Highlight Points of Agreement
a. State appreciation for the meeting, etc.
b. Acknowledge appropriateness of the report
c. State specific area(s) of agreement

5. Identify Issues
a. State area(s) of disagreement using "I" statements
b. Acknowledge professionals concern for your child
c. Admit misunderstanding (if applicable)

6. Suggestion of Options
a. What are all the possible options?
b. How can you summarize them to show you understand?
c. What are advantages and disadvantages of each option?
d. What are the options from most to least preferred?
e. What is the most positive thing about your preferred option?

7. Decide on Action to Take
a. Who will deliver services?
b. What services are to be delivered?
c. Where will services be delivered?
d. When will services begin?
e. What time and day of week will services be delivered?
f. How long with the services need to be provided?
g. How will option be evaluated for effectiveness?
h. Who will evaluate the options for effectiveness?
i. When will option be evaluated for effectiveness?

8. Feedback and Acknowledgement
a. What did you like about the meeting?
B. Who will make the next contact?
c. When will the next contact be made?
d. How can the contact person be reached?

Friday, September 10, 2010

Guidepost Three

Continuing with this discussion about our ethical decision-making when it pertains to our children ... our quality of life, and our child's, depends on quality social interactions. I suppose you could sum this up in one word -- rapport

Or maybe two -- trust and rapport.

When Shahla talks about this idea of ethical social interactions with behavior professionals, she focuses, in part, on family interactions. Good professionals will recognize the child's strengths and the family's strengths and expertise. They will respect our relationship boundaries and our confidentiality. They will obtain our informed consent when we draw up treatment plans. A good plan will reflect both child and family-centered communication.

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.

One of the hardest places for parents to be effective is at a special education team meeting. Even professionals have trouble when there are conflicting demands between the school district and the team's work on behalf of our child.

One of Shahla's students, Heather Barahona, developed and tested a training program for parents to help them have better social interactions with school professionals. The next post will have Heather's eight tips for parents which grew out of that test program.

Thursday, September 9, 2010

About those experts

Just a little more on Guidepost Two ...

Not all experts are created equal, by the way. We had a bad experience with a dentist about ten years ago. This dentist came very highly recommended, supposedly someone who could handle challenging cases.

We started taking Sam to the dentist as a toddler, back when we lived in California. The dentist that cared for Mark and me had a nice, chairside manner and Sam warmed to her right away. He was always very cooperative. We didn't have any trouble after we moved to Texas, either, until he turned 12 and it was time for that last set of baby teeth to fall out. Only they didn't.

For some reason, the roots didn't decay enough behind the permanent teeth and they got stuck. He had a little trouble cooperating with the pediatric dentist, who, for some reason, did not want to pull them out. She referred us to another dentist.

He examined Sam and told us he would have to be sedated in order for him to extract them. He had an anesthesiologist partner that came in on a fairly regular basis, so it could all be in the office.

The experience was still traumatic for Sam. He hated being sedated.

And when we went back to the dentist for a regular check-up, he didn't actually do anything except ask Sam to open his mouth. No cleaning, scraping, x-rays, nothing. I didn't get charged for that, but I got charged for the office visit.

And it went like that, every three months until after a year, I realized this guy had no intention of ever treating Sam while conscious. He started talking to me about making another appointment to sedate him for a cleaning.

We walked out the door and never came back.

I had to sweet talk my own dentist to take Sam on. He reluctantly agreed, and we started with a cleaning with one of the hygienists working in the office. It went off without a hitch. She went slowly and let Sam ask a lot of questions. His first few scrapings weren't with the scaler, she used the ultrasonic tool instead. Eventually, he graduated to the scraper.

We got sealants on his teeth, and he had no trouble tolerating that. He's had excellent oral hygiene. He's never needed fillings and the dentist said that since he got through his teen years without a problem, he may go the rest of his life without ever needing one.

When he was 18, we had his wisdom teeth pulled. He was a little nervous, but he was ready for the sedation. When he woke up in the oral surgeon's recovery room, he said, "Am I done? That wasn't so bad."

Yes, Sam, you're done.

Wednesday, September 8, 2010

Tuesday, September 7, 2010

Guidepost Two

Continuing this discussion about making the best decisions to protect quality of life for our children ...

The second guidepost is knowing that the skills and expertise of the people in our lives will have an effect on the outcomes.

Like physicians -- whose oath requires them first to do no harm -- nearly every professional has ethical guidelines. (We journalists do, too, although critics sometimes accuse us of the opposite when they don't like what we print.) 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. Check the website of the professional association -- such as the American Medical Association or the American Speech-Language-Hearing Association -- to find out more.

Similarly, you should know credentials and competencies for the professional. For example, behavior analysts, who do so much to help our children, have quite specific guidelines for helping people with autism.

(Go here to find them: www.abainternational.org/Special_Interests/AutGuidelines.pdf)

Don't ever be afraid to ask questions of the people in your child's life. Their answers will tell you a lot. The National Institutes of Health wrote a primer to help you get started.


(Go here to see that: www.nimh.nih.gov/health/publications/autism/complete-index.shtml)

Monday, September 6, 2010

Institutional review boards

Just expanding on Guidepost One a little bit ... let's say you're thinking about pursuing a new treatment for your child.

It's a reasonable thing to do.

When I was age 6 to 10, my father was in dental school. He was approached by someone doing research on interceptive orthodontic treatment. It was very new back then. My dad was worried about the proposal, and wasn't sure it was a good idea that I be an experiment subject.

These days, he said it was too bad because I was the perfect candidate. I had a little bit of crowding, and it was causing some teeth to grow in crooked. Had I had spacers put in, they probably would not have needed to pull my bicuspids to straighten my teeth when I was a teen. That practice isn't considered so smart anymore, and I know why. I had to have orthodontia again as an adult and eventually had to give up playing the euphonium because my bite kept shifting. Eventually I had to choose between chewing my food and playing.

I chose food.

Perhaps if they'd had an Institutional Review Board back then, my dad would have felt more comfortable allowing me to be a part of that experimental treatment.

IRB review and oversight is a terrific way to know whether a new treatment is being properly conducted and properly supervised. These groups, often situated at universities and medical schools, make sure the treatment experiment is scientific and ethical.

Mark and I agreed that if a university was ever studying something related to autism and we could participate, that was how we'd help Sam get access to new services and ideas. We were part of a terrific sibling study that I think went a long way to helping Sam and Michael be able to play together as boys and tolerate each other as teens.

We also had Sam in a case study, which eventually became a published paper.

One time, we thought we were participating in something bold and new and scientific, but as we got deeper into it -- auditory training it was called back then -- we realized it was bogus and we bailed.

Look for the IRB label.

Sunday, September 5, 2010

Guidepost One

Among the more important things we do for our kids who have autism, or other special need, is make decisions about their treatment and education -- sometimes long after most other kids are down the road of self-determination.

As Sam has grown and matured, he's been able to make many more decisions for himself. I serve, more often than not, as a backstop. For example, he's going to a horse show next weekend with some friends. The person organizing the trip checked with me about details to make sure the plans really do work for Sam. Sam doesn't say yes to everything -- he can anticipate problems in a lot of situations. What's different for him, unlike Michael or Paige, is he doesn't always problem-solve "on the fly" as well. Fortunately, the person organizing the trip is experienced. I anticipate a good time will be had by all.

For years, Mark and I rather instinctively decided some things on Sam's behalf that we hoped would be the most appropriate and ethical thing we could choose. Call it "on the fly," if you will.

When Shahla Alai-Rosales, an applied behavior analysis professor at the University of North Texas, shared her decision-making model with me, I was so impressed. It's her area of expertise, of course. And she thinks about ABA professionals with the rubric, not parents. But all six guideposts for ethical decision-making are good for us parents, too. When we're fully conscious of the decisions we're making, we have a better chance of making them good ones.

Shahla's first guidepost is to recognize that the quality of the information you have will affect the quality of your decision. This is the most important guidepost. Assuring the quality of that information comes in three parts:

1. You have to know what resources are available to you to make a good decision. There are support networks and training options for us, no matter what age our child is. I've mentioned many of them elsewhere in this blog (search on decision-making). You need to know what your funding options are. There are government programs, and sometimes there is support for local programs. You need to know all your treatment options.

2. You have to be able to evaluate those resources to make good decisions. There is a lot of help out there that is cutting edge. Some of it is very good. Some of it is garbage. But you can ask about the evidence; and ask where the work fits in the greater body of research. Ask the treatment providers how they are going to measure their progress, and how they will make adjustments, if needed. Well-thought answers to those questions will help you determine the quality of the information.

3. Keep in mind your rights and responsibilities as a parent; and keep your child's right to happiness and a childhood in mind, too. Sometimes it's easier, when you think about your responsibilities first to see where your rights, and your child's rights, fit in. Don't forget that personal liberties and self-determination are part of a greater social fabric.

Overheard in the Wolfe House #20

Sam: You alright Paige?
Paige: Yes. Why do you ask?
Sam: You look tan.
Paige: That's because I've been out in the sun for the last three months.

Friday, September 3, 2010

Overheard in the Wolfe House #19

Sam: I think fall is here.
Peggy: Yes, I believe it is.
Sam: I turned the air conditioners off. You can sleep with the windows open now. Peace and quiet.

Thursday, September 2, 2010

Wednesday, September 1, 2010

Overheard in the Wolfe House #17

(as Paige enters the room, after a long talk with Sam about whether it's more drastic to un-friend or block someone on Facebook)
Peggy: Aren't you going to miss all this big-brother advice next year?
Paige: I will. I will.
Sam: I don't think so. The sound of her voice is too grown-up for me to think she's going to miss Michael and me when she goes to college next year.

Tuesday, August 31, 2010

Overheard in the Wolfe House #16

Peggy: So, Sam, how are your new classes going?
Sam: Pretty well.
Peggy: Are they all required classes?
Sam: No, just the personal hardware class. I'm taking Linux and animation for fun.

Monday, August 30, 2010

Sunday, August 29, 2010

Return of the Pawnee



Thanks to Texas A&M's little video, "Texas Inlay & Four-Flap Grafting," the girl can graft.

Friday, August 27, 2010

Bloom falling off the yellow rose ...

Texas faces an $18 billion deficit, and it is likely that some painful cuts will fall on the state's most vulnerable -- as if this state's services for the aged and those with disabilities and special health care needs weren't already starved for resources.

Here's what could be lost, simply assuming the across-the-board 10 percent cut ordered by Gov. Perry:

Community Mental Health Services = $80 million
State Mental Health Hospital Services = $44 million
Children with Special Health Care Needs = $24 million
EMS Trauma = $23 million
Mental Health Crisis/Transitional Services = $10 million
Primary Care = $9 million
Immunizations = $8 million

Some of the beautiful people in Austin who remind the legislators to have a heart, and be smart, with our money, have organized a rally on the north steps of the capitol for 1 p.m. Sept. 1. For more information, call Dennis Borel or Chase Bearden at 512-478-3366 or e-mail: stoptexascuts@gmail.com.

Tuesday, August 24, 2010

Overheard in the Wolfe House #15

Peggy: So what do you think of this beautiful weather?
Sam: What do you mean? It's the same.
Peggy: No, the 100s are gone. It's beautiful out there.
Sam [stepping out on the porch and checking the thermometer]: My God, it's a hurricane.

Sunday, August 22, 2010

Lend your experience

Some of the best help a parent can get is from another, more experienced parent.

If you are like me, one of those more experienced parents, you might think you don't have time to help. But you do.

There is some training involved, but it's fun and chances are, you'll learn a thing or two that helps your family. And then you pay it forward by providing support to another family -- usually on the phone, or through e-mail.

If you're ready to help, mark your calendar for Sept. 25, because that's the next time Texas Parent to Parent will be in Dallas for parent volunteer training.

Here's a little from their press release:

"We believe that support from other parents is the best way to assist a family on the journey of raising a child with special health care needs. The sharing of joy, frustration, and hope with another parent is one of the most powerful experiences a parent can receive. We’re looking for a few parents who are ready to share their time and their experience.

Do you know a family who would like to attend? Who are the parents who have made a difference in your life? Who has helped you along on your family’s journey?"

Call 1-866-896-6001 ... and pass this on.

Saturday, August 21, 2010

Billy Bob's

Last year, Michael discovered that he could get into Billy Bob's, Fort Worth's famous honky tonk, on Thursday nights for free.

He and Sam went together this Thursday, sort of an end-of-summer celebration. Both start classes this week. They were lucky this time, Michael reports, because the cover band kept playing. At one point, they played a family favorite, Stevie Ray Vaughan's Texas Flood.

Sam reports that he had fun and would like to go again soon. "People always have fun at Billy Bob's," he said. It took a while to figure out what was going on, he said. He danced with one girl.

Michael danced with the same girl.

Thursday, August 19, 2010

Overheard in the Wolfe House #14

Michael: Oh, why is college so complicated?
Sam (in a fatherly tone): I think you know the answer to that, Michael.

Wednesday, August 18, 2010

The Confundus charm

J.K. Rowling has a great mind, not just a great imagination. There is no antidote to a Confundus charm, only the strength of character that allows one to resist.

Or, as Epictetus said, "Only the educated are free."

Sunday, August 15, 2010

Overheard in the Wolfe House #13

Sam: Those lights on the modem and the router are really beautiful.
Peggy: Yes, they are.
Sam: Blue and green. Like Christmas lights.

Wednesday, August 11, 2010

Overheard in the Wolfe House #12

The little rooster crowing at the evening sunset.

He's five months old.

Overheard in the Wolfe House #11

Sam: It's an even year. Time to vote again.
Peggy: So who you voting for? No Hair or Good Hair?
Sam: No Hair.

(Subtitle this one: No hair, just a head.)

Monday, August 9, 2010

The theory of self-reference

I've often wondered why we don't hear much about the possibility that artificial hormones play a role in the rise of autism rates.

I couldn't tolerate birth control pills and wrote about the experience, in relation to Sam's autism, in my book. To me, hormones could explain why, until recently, autism was in first-born males four out of five times. It could explain why the uptick in recent years. It could explain why more girls now, and not just boys. It could explain why a recent university study found more occurrences among the wealthy

Like being rich causes autism. No one believes any chicken laid that egg. But it is well-known that the wealthy have better access to birth control options.

Yet, people keeping beating that vaccination horse, even though it's been looked at rigorously for the past decade and no one has found a solid link. And lately, Vitamin D deficiency is all the rage.

I'm skeptical any causation theory if the proponent follows their theory with a "treatment" protocol, or hopes to file a class action lawsuit. Yeah, right. I'm not buying it.

From the theory of self-reference -- in other words, no scientific basis whatsoever -- I still want to ask, why aren't we looking at the effect of artificial hormones?

Sunday, August 8, 2010

Overheard in the Wolfe House #10

Peggy (disappointed after reading her favorite grocer won't expand to Texas): Trader Joe's isn't interested in being online either.
Sam: You can buy a plane ticket to Sacramento if you want to shop at Trader Joe's.

Monday, August 2, 2010

Overheard in the Wolfe House #9

Sam (on manhood): I might have to start shaving every day. Boy, it's hard to keep up with that.

Nature and Nurture

We've come a long way since Bernard Rimland shredded BrunoBettleheim's theories that refrigerator moms caused the autism in their children. Or not far at all, depending on your point of view.

In this summer's Columbia magazine, I read about a promising study in Norway that is tracking 110,000 people over their entire lives. A mother-and-child cohort will gather data that could be used to test dozens of theories for autism's causes. In addition to chronicling every illness, immunization and medical treatment, they will be tracking gastrointestinal problems, too.

The world will likely get another pass at testing the persistent thought that autism is linked to vaccinations, although more than a decade of study has yet to link the two conclusively. In my opinion, very little work has been done to examine the stomach problems our kids have.

I'm not certain Sam's gut problems, even though they began at about 18 months old, came first and the autism came second. He had autism problems from the start. But it's about time some serious research got done in this area. With the last doctor I mentioned this concern about his gut I got -- as usual -- a blank stare.

Sunday, July 25, 2010

Overheard in the Wolfe House #8

Sam: No more coal. No gas. Everyone needs a solar panel on their roof. The power companies should use wind. Maybe if I tell them, they will listen.

Thursday, July 15, 2010

I need this support but don't have it

If you're the parent or caregiver for a young person, age 12 to 22, with a disability, you, too, can fill out this national survey about supports your family has and supports you need.

http://www.fastfamilysupport.org/

I just finished it. It will be a really easy survey for Texas parents, filling page after page by clicking the button that says, "I need this support but don't have it."

UPDATE: And Saiqa Akhter didn't get any either. Godspeed to little Zain and Faryaal.

Sunday, July 11, 2010

TMTA

This is my nomination for a new text message abbreviation: too much to ask. It's what parents do to their children all the time. (Insert teenager rolling eyes here.)

I just asked Sam to drop an overdue library book in the drive-thru drop on his way to work today, or on the way home. I've asked him to do this sort of thing before -- drop off the water bill, catch the mail, pick up a few groceries before coming home. He's also made his own bank deposits on the way home. But he's totally stressed out. I don't get it.

TMTA

Saturday, July 10, 2010

Overheard in the Wolfe House #7


Peggy: Sam, come out to the back porch and hear this frog sound.
Sam: I heard that last night. I thought it was a goose.

(credits to UT's Herps of Texas website)

Saturday, July 3, 2010

Temple Grandin flies coach

On a Southwest Airlines flight from Amarillo to Denver recently, Sam and Dr. Grandin sat across the aisle from each other.

Michael was the only other person in our family who recognized her. Sam couldn't make the connection between the photos and the real person. It took Michael a minute to realize why I didn't want to stop and introduce ourselves. I have no idea whether Dr. Grandin would feel overwhelmed by strangers doing that, but Sam would.

Dr. Grandin spent the flight reading the Wall Street Journal. Sam liked looking past his sister and me to see out the window. Probably no one else on the flight noticed all the famous people on the plane.

As Sam says, "I'm a little bit famous."

Wednesday, June 30, 2010

Overheard in the Wolfe House #6

Sam (turning off the electric razor): That's it. I give up.
Peggy: Trying to get every last hair? Smooth as a baby's bottom? [pause]. That's an analogy Sam.
Sam: No it isn't. That's a simile. [launches into a detailed explanation of the difference between the two, with examples.]
Peggy: Thanks, Sam.

Tuesday, June 29, 2010

Considering neoteny

(First published 1/24/09)

Sam's social skills have come a long, long way as a young adult. We’ve always known how bright he was. He’s matured into someone who understands the “rules” of adult life and the working world, and often sees emotions with great clarity.

Some slices of life skills we call “social skills” remain stilted. I’ve never been able to quite put my finger on it. After my parents’ 50th anniversary party – epic family gathering that it was – my mom did: “You feel about him like you would a dog.”

It’s a good thing we understand each other, because there could be a terrible subtext with that description.

I happened to be finishing up Gordon Grice’s “The Red Hourglass,” at the same time Mom and I had that conversation. In his book, Grice explores at length this concept of neoteny – the preservation of juvenile characteristics – and how the human and canine relationship could evolve because of that quality. Every domesticated animal has some degree of juvenile characteristics preserved in adulthood … it’s what makes them domesticated.

I felt pretty clueless after I googled “neoteny and autism” and found others in the blogosphere that are considering the concepts directly (neoteny.org). Of course, Temple Grandin has explored human-animal relationships and their implications for all of us.

I do, however, want to offer this to the broader conversation. If neoteny will forever characterize some of his social skill set, and that of other people with autism, that puts a responsibility on the rest of us.

Plenty of folks don’t have a clue how to interact with domesticated animals responsibly.

Yet I’m encouraged, because it's not an unfamiliar responsibility. I don’t have to meet him more than halfway, and no one else has to either.

Monday, June 28, 2010

TxP2P: Dan also recommends ...

Proc Natl Acad Sci U S A. 1999 Nov 9;96(23):13427-31


Running enhances neurogenesis, learning, and long-term potentiation in mice.

van Praag H, Christie BR, Sejnowski TJ, Gage FH. Laboratory of Genetics, Salk Institute for Biological Studies, La Jolla, CA 92037, USA.

Abstract

Running increases neurogenesis in the dentate gyrus of the hippocampus, a brain structure that is important for memory function. Consequently, spatial learning and long-term potentiation (LTP) were tested in groups of mice housed either with a running wheel (runners) or under standard conditions (controls). Mice were injected with bromodeoxyuridine to label dividing cells and trained in the Morris water maze. LTP was studied in the dentate gyrus and area CA1 in hippocampal slices from these mice. Running improved water maze performance, increased bromodeoxyuridine-positive cell numbers, and selectively enhanced dentate gyrus LTP. Our results indicate that physical activity can regulate hippocampal neurogenesis, synaptic plasticity, and learning.


http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed_reviews&uid=10557337


Supporting articles:

Running enhances neurogenesis, learning, and long-term potentiation in mice. van Praag H, Christie BR, Sejnowski TJ, Gage FH. Proc Natl Acad Sci U S A. 1999 Nov 9;96(23):13427-31.PMID:

Synaptic plasticity and learning and memory: LTP and beyond. Hölscher C. J Neurosci Res. 1999 Oct 1;58(1):62-75.

Long-term potentiation and glutamate release in the dentate gyrus: links to spatial learning. Richter-Levin G, Canevari L, Bliss TV. Behav Brain Res. 1995 Jan 23;66(1-2):37-40.

LTP, NMDA, genes and learning. Cain DP. Curr Opin Neurobiol. 1997 Apr;7(2):235-42.

Memory mechanisms: the nociceptin connection. Goda Y, Mutneja M. Curr Biol. 1998 Dec 3;8(24):R889-91

Long-term potentiation and its relation to learning and memory Li YX, Mei ZT. Sheng Li Ke Xue Jin Zhan. 1993 Jul;24(3):278-80.

Mammalian learning and memory studied by gene targeting. Tonegawa S. Ann N Y Acad Sci. 1995 Jun 30;758:213-7.

Cerebellar LTD: a molecular mechanism of behavioral learning? Lisberger SG. Cell. 1998 Mar 20;92(6):701-4.

New neurons in the adult brain: The role of sleep and consequences of sleep loss

Peter Meerloa,*, Ralph E. Mistlbergerb, Barry L. Jacobs, H. Craig Hellerd, Dennis McGinty

On Autism & Exercise

By Daniel Hawthorne

This past week, yet another reason became apparent to me: that of the connection between physical activity and the development of new nerve cells in the hippocampus of the brain. A recent study at the Salk Institute involving four groups of mice confirmed just such a connection. The mice in group one were sedentary, being the control group. The mice in group two had regularly scheduled times for swimming; those in group three could swim at anytime. Group four had a running wheel; thus, the mice there were allowed to run freely at any time. At the end of the twelve days, it was not surprising that mental development occurred in all four groups; what was surprising, though, was the amount of difference found among the four. Group four differed by twice the number of new cells gained in group one. Keep in mind that this was only for twelve days, not a real significant amount of time in the total lifespan of a mouse, I would think, anyway. Groups two and three also fared much better than the control group. (1)
Other studies have shown that the human brain is plastic as well.
http://74.125.95.132/search?q=cache:http://www.autismtoday.com/articles/autism_excercise.htm