Overheard in the Wolfe House #4

Sam: (after working for four days to get the wi-fi working on his old PC) Why is it that once you give up all hope then the problem is fixed?

Michael: That's just how it is, Sam.

Overheard in the Wolfe House #3

Michael: So how long are we going to let that orb spider spin a web in the middle of the living room?

Paige: Wait, let me get my camera.

Showmanship 101

Sam competed for the first time as a Class A rider last weekend in the Equestrian State Special Olympics at the Brazos County Expo Center in Bryan, Texas. He's been riding at the Riding Unlimited stables in Ponder since he was five.

Life with Sam teaches me something everyday, but this past weekend was full of beautiful little life lessons, similar to Robert Fulghum's book, All I Really Need to Know I Learned in Kindergarten.

For example, a potluck becomes a team dinner when someone brings the giant bowl of ramen noodle salad.

At Saturday night's dance, I learned from Connor Bateman that it's good to ask everyone you can to dance with you, and to always say yes when someone asks you to dance.

From Brett May, I learned to avoid using many words when one, well-chosen word takes care of it.

From Anna McArdle, I learned that you keep turning Mr. Big around until the gate is within your reach.

And from Sam, I learned Showmanship 101 -- just because everyone in your class (ages 8 to 29) might be half your age, doesn't mean they're half the competition.

Overheard in the Wolfe House #2

Peggy: [sneezes loudly]

Sam: Boy, sneezes come fast and hard out of you.

Peggy: Yes, they do.

Kindle for special readers

Sam is finishing his second all-online computer class this semester, Introduction to Database, a class for which he had two versions of the textbook -- traditional and Kindle.

He was slow to warm to the Kindle, Amazon's e-reader that I bought him for Christmas, but by the end of the semester, his study routine depended heavily on two key features -- "text-to-speech" and "search this book."

By the middle of the semester, he got in the habit of starting each tutorial with the Kindle reading the opening scenario and concepts to him. When he got to the working steps of the tutorial, he went back to the textbook, so he could slow the pace down.

We found that to be one of the disadvantages of the text-to-speech feature. You have to turn it off in order to navigate around the book.

[I can see why the Kindle was abandoned by some universities that were trying it out -- accessibility problems and some publishers holding onto reading rights (um, publishers, let's differentiate between that and performance rights, ok?)]

When Sam got to the end of a tutorial or unit, he used the search to hunt down passages to evaluate true/false or multiple choice questions on his quizzes. His quizzes were timed -- he had an hour to answer 20 questions -- so the Kindle had the potential to get him to the right spot quickly.

Occasionally a quirky search result made us wonder if a low battery affected the power of the search.

After several tutorials, the professor provided a long list of prompts that went back through three or four chapters in order to prepare for the exam. Sam has long been accustomed to using indices and glossaries, but I watched him use the Kindle to make quick work of those searches, too.

One note of caution: the reader who is spatially oriented won't like how the search-the-book feature drops you into the middle of a passage without any sense of where you are in the book. Locations are numbered. There is nothing in the margins of the screen that specify the chapter, page number or any other context, unless you happen to fall below a heading of some kind.

Along the way, I showed him how to use other features -- highlighting and annotating. Sometimes, a concept was better understood by highlighting the the topic sentence of several consecutive paragraphs.

And sometimes, I could explain a concept better than the author, so I inserted an annotation. Sam is smart, and most of the concepts are explained plainly and directly, but not always.

We writers that think we are being crystal clear with our explanations find out how sorry our directions are with readers like Sam.

For example, in the guidelines for designing a database, the first recommendation is "identify all the fields needed to produce the required information." Translation: make a list of the fields. Next, "organize each piece of data into its smallest useful part" and "group related fields into tables." Translation: break up any fields that can be made smaller, then sort them.

I really couldn't translate the concept of "putting common fields in each table." At that point we had to draw a lot of pictures and work with a lot of examples.

Which, by the way, the Kindle needs a drawing tool.

[Sam never liked writing in his books, since he always wanted to sell them back at the end of the semester. I've learned that computer majors and music majors experience obsolescence in their disciplines at a different pace.]

With charts, the Kindle also comes up short. The text-to-speech feature doesn't read them. And they enlarge only one level (you have to position the cursor over them until the plus-sign appears in order to enlarge them.) If Sam hadn't had the book, he wouldn't have been able to complete some of the later assignments, because the book asked him to copy code in the chart.

The embedded dictionary is a powerful feature. Early in the semester, Sam needed a lot of the early vocabulary defined for him. With previous courses, he often skimmed past unknown words hoping he'd get the context eventually. I could see the point -- everything is moving so fast if you spend too much time looking up words you're scared of getting even further behind.

I don't think professors realize how much new vocabulary they throw at their students at the beginning of the semester.

All in all, though, Sam said he'll be looking for Kindle versions of next year's textbooks. It was a powerful tool. He recognized it's power when I first showed it to him, and was almost afraid of it (he called the dictionary "addictive"), so if you plan on introducing it to your special reader, go slow at first. Look for teachable moments, they'll come.

I knew we were good when I borrowed it one morning and had to promise to have it back by that afternoon.

Overheard in the Wolfe House #1

4:15 p.m. Saturday

Sam: "Hey, Mom, sorry I took up your beautiful day."

Peggy: "Oh, that's ok."

They shoot coyotes, don't they?

I've been holding my powder on the death of Gerren Isgrigg, the 6-year-old boy with both a developmental disability and medical needs, and who was left to die in a field by Lake Lavon by his grandmother.

I wondered how long it would take before the political shoe would drop.

And with an unimpressive thud, it did:

Let's broaden our Baby Moses law to include children up to age 10. Parents and caregivers can abandon a child at a fire station or hospital without fear of recrimination.

Really, Texas, really? Is that all you've got?

Let's just keep passing the problems around. Law enforcement is already chasing down Gerren's mother. Apparently, they want to know whether she unlawfully passed the burden of his care onto her own mother, Gerren's grandmother. From the news reports, it appears that Gerren's father walked away from the responsibility three years ago.

This rant is not about blaming parents for failing to step up. I am not the first, last, or only parent who, in her darkest, weakest moments, nearly headed out the door. Many days, I wasn't certain I was going to make it through the next ten minutes, let alone to the end of the day or week. And my child does not require skilled or semi-skilled medical care. I know families with such burdens. The burden for those families is mammoth.

You cannot fathom the depth of our trenches until you've been fox-holed there for five or ten years.

Texas Parent-to-Parent matches experienced -- and trained -- parents with less experienced parents in similar situations. As a young parent, I got incomparable emotional support from someone who had walked in the same cruel shoes in the same darkness and somehow found her way into the light.

But emotional support is not caring for the caregiver. It's not respite. It's not case management, or additional in-home care, or supplemental training.

You want that support in Texas? Good luck.

This is Texas, home of the Corpus Christi fight club, where the governor shoots coyotes.

Do you want to be my friend?

Those who've read See Sam Run may remember the passage that alludes to Eric Carle's book, "Do You Want to Be My Friend?" Classic children's books were a big part of fostering Sam's language development as a preschooler. That little mouse was persistent, and Sam liked the repetitive language.

Until he became a teenager and adult, however, it was never very clear to me what friendships meant to Sam. They seemed to matter, but the attachments weren't quite like the attachments his brother and sister developed with their friends. Sam was fortunate in that the elementary school counselor fostered friendships that ended up carrying Sam through much of his middle and high school years. I saw, over time, that friendships have always been important to Sam. He adores his friends.

On his Facebook page, I've seen many of the same names from those early circles, plus a lot of new names. He enjoys being on Facebook and feeling connected to people.

But in daily life, the social activities -- movies, bowling, games -- have really dropped off since high school. Many of his high school chums are graduating college and getting on with adult things -- getting jobs, apartments, moving away. I know that is as it should be.

Since Sam is a student at a community college and not a traditional, four-year school, his opportunities for a rich social life are limited. He takes advantage of many that TRIO offers, but that's about it.

Adult life brings new circles of people, and new possibilities of friendships. He has a devoted circle of friends at Riding Unlimited, and a small circle of friends from our community. A co-worker invited him to come along to the Denton Arts & Jazz Festival, an invitation Sam had to turn down because of a school conflict. Sometimes they go to lunch together.

Humans are not lone creatures like hawks, or eagles, or foxes, or polar bears. We're more like goats, or sheep, or horses -- we're herd animals. We need connections to survive, and to thrive.

As adults, making connections -- well, we're not very imaginative about it. We befriend people like us. After you get married, for example, you make friends with other couples. After you have a baby, all your new friends are other couples with babies. Friendships with people who aren't exactly like us take a little more thought and consideration.

I know there are support groups that could help Sam and others like him make friends, expanding their social life. We've been to a few. But, they are so far removed from his daily life, they might as well be in Katmandu. In my dream world, everyone meets someone like Sam at some point in their life and decides this person is someone to include in their circle of friends.

In the final analysis, it only requires a little imagination, it's not difficult at all to be Sam's friend.

Evaluating health information on the web

(First published 10/26/09)

Sam often asks me to sit with him as he does his homework with his online classes. He is taking Introduction to the Internet, and as Sam says after completing every lesson, “I learn something every day in that class.” It's been fruitful for me, too.

A special section of his textbook discusses health and fitness websites. Many people go to find information there, but few have shown either the inclination or the skills to check out the robustness of those sites.

If you are a parent of a child with autism looking for more information on the web, here is your $100-tip-of-the-day, straight from Sam: look for accreditation.

The Medical Library Association publishes the Top 100 medical websites through CAPHIS, Consumer and Patient Health Information Section. These folks are serious about hunting up quality information: researchers and professionals often depend on them to ferret it out.

Two other nonprofit groups offer the health equivalent of a Good Housekeeping seal of approval – URAC, Utilization Review Accreditation Commission and HON, Health On the Net Foundation. Look for those seals to see whether the website has been independently reviewed for the quality of its information.

And here’s my tip to continue the chase, based on years of investigative journalism:

If you’re a fan of a particular website and its information, and it doesn’t appear on CAPHIS Top 100 and it doesn’t have the accreditation, you can use your own critical thinking skills to evaluate the information. Some things to watch out for: sponsors and ads on the site, attribution of claims made, authority and credentials of those in charge of the content.

If red flags are flying in your head, then run its content through this little rubric:

http://www.quackwatch.com/01QuackeryRelatedTopics/signs.html

Quackwatch is one of CAPHIS’ Top 100 sites and can let you know whether you’re seeing some bad science.

The meaning of success

Mark and I made a leap of faith when Sam turned 18 years old not to seek guardianship. Something about guardianship felt over-the-top for his protection.

With him at home, it’s easy to keep tabs on a host of things as he builds his life skills -- from maintaining his car to keeping his checkbook.

The older he gets, the more that feels like the right decision. I should keep my checkbook as well as he does. And the kid bought himself a set of tires this week the day after the mechanic advised it. I'm still trying to squeeze time for an oil change.

I’m glad that, even as I prepared my own will, I made sure none of the provisions I made for my kids implied something else for Sam than what Mark and I have done so far.

Here's some Monday morning quarterbacking for parents of high schoolers or younger who think it may be possible to make that leap: follow your best instincts, but remember, once your child is out of high school, you have very little say in their accommodations.

Sam's first year of college was tough.

I can’t say we weren’t warned. The last years of high school, Sam came to his ARD meetings (that might by an IEP meeting to those of you living in other states) to learn self-advocacy. He was getting the hang of it by the end of his senior year.

We did our best before his first semester at North Central Texas College to introduce Sam to the counselors in the TRIO department. I showed them the examples of the kinds of accommodations he needed -- copies of the teacher’s notes, extra time to complete assignments on occasion, tutoring, and taking tests in the TRIO’s test center. Sam was there and was familiar with all that, but it would take him some time before he would get the hang of scheduling tests and tutoring sessions.

After the first meeting, I wondered if they had their doubts he belonged at North Central Texas College. We made a leap, and hoped the net would appear. Sam has this way of winning people over -- and he did.

He got that charm from his father.

He missed some things the first year of college, and not all of that was solely his problems or responsibilities. (We’ve got a long way to go, if college campuses are going make the changes needed to accommodate this wave of kids coming of age.)

At one point, Sam signed a letter giving his TRIO advisor permission to talk to me when he was having trouble. We talked several times the second semester, and it looked like he was getting his sea legs. The semester after Mark died was rocky. I was deeply touched when three of the counselors there invited me to lunch. They were worried about how Sam was coping. We talked a little about how to help him, and I knew. They were as vested in his success as me.

That seemed the ultimate goal of self-advocacy: convince someone other than your mom to invest in your success.