Kindle for special readers

By Peggy | May 8, 2010 |

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.
Posted in adults with autism, language, self-advocacy

They shoot coyotes, don’t they?

By Peggy | April 29, 2010 |

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.
Posted in rants

Do you want to be my friend?

By Peggy | April 27, 2010 |

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.
Posted in hope, language, social life

Evaluating health information on the web

By Peggy | April 24, 2010 |

(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.

Posted in decision-making, health

The meaning of success

By Peggy | April 24, 2010 |

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.

Posted in adults with autism, self-advocacy

Parental car wrecks

By Peggy | April 23, 2010 |

After driving to Clark Airfield in Dish for a news story today, I remembered an important facet in pilot training that helps keeps us air travelers safe — identifying and rooting out hazardous attitudes in decision-making.


During training, pilots are given problem scenarios and learn through their choices on how they might solve that problem whether they are vulnerable to anti-authoritarian, impulsive, invulnerable, macho and resignation attitudes.

For example, “You do not conduct a thorough preflight check. On takeoff, you notice that the airspeed indicator is not working. Nevertheless, you continue. Your passenger feels strongly that you should discontinue the flight and return to the airfield. You then become upset and …”

(a) Tell them to “cool it” for butting in. (macho)

(b) Start banging the indicator to get it working. (impulsive)

(c) You think that a thorough preflight check is something thought up by bureaucrats just to waste time. (anti-authority)

(d) You say that nothing dangerous will happen on the flight. (invulnerable)

(e) Everyone continues to become upset, but you do nothing, because you feel there is no use trying to calm them down. (resignation)

Of course, a good pilot would abort the flight and return to the departure area.

With just a little imagination, we can re-work this scenario for a parent or caregiver making decisions about a treatment choice.

For example, “You notice that a treatment is draining your family’s finances or appears not only to not be working, but also is beginning to hurt your child. Nevertheless you continue. Your spouse/parents/friends feel strongly that you should discontinue the treatment and return to a previous protocol. You then become upset and …”

(a) Tell them to “cool it” for butting in. (macho)

(b) Start banging on your insurance provider to pay the bill, or other caregivers to get the treatment working. (impulsive)

(c) You think a thorough evaluation of the treatment is something thought up by bureaucrats just to waste time and deny resources for your child. (anti-authority)

(d) You say nothing dangerous could happen during the treatment (invulnerable)

(e) Everyone continues to become upset, but you do nothing, because you feel there’s no use in changing now. (resignation)

Our children — including those without special needs — depend on us to keep them safe. We can do a better job of it if we root out those same hazardous attitudes.

Several months ago, the Chicago Tribune took an exhaustive look at some of the dubious procedures being promoted as autism treatment. These “treatment” professionals have learned not to call it a cure for autism, but to the outside observer, it did appear that desperate families pursued those treatments as if they did offer that possibility.

I recognized hazardous attitudes in some of the comments parents posted online with the story and blogged about it at the time. (I’m not passing judgment. Goodness knows, I’ve made all these mistakes at some point in my life, but you, poor reader, would probably have to read six essays to get the point I’m trying to make in just this one.)

To me, this comment reads macho:
“Tsouderos and Callahan should be deeply ashamed of themselves for writing such a biased, ignorant article.”

This one comes off impulsive:
“The “scientists” who lack the sense of urgency, intellectual curiosity, and moral courage to study and treat our kids are the ones who do harm. They, along with the writers and editors of this article who encourage their complacency, are accomplices in the death and destruction of our kids.”

This is clearly anti-authoritarian:
“My 2 year old son has autism, and he has a stronger sense of ethics in his beautiful, nonverbal little soul than any of these “scientists” or government agencies that continuously seek to disprove methods of treatment that may not be tested by the elitist scientific community, but are tried and true to those of us waging this battle on a daily basis.”

This seems invulnerable:
“I’m right. I see that my comment was deleted by someone who is opposed to the truth. Chelation cures autism. No sane parent quits after just improving a few symptoms. We want our kids back to normal, the way they were born, before mercury mangled their brains.”

And this, resigned:
“Without money from the government or Big Pharma, there will be no research, and the scientific evidence so many people crave will not materialize. Parents are left to experiment on their children. Anecdotal evidence is better than no evidence in cases where the established medical community has nothing except behavioral therapy and psychotropic drugs to offer these children. Parents of autistic children are often desperate, and in desperation will experiment on their children. Sometimes these therapies result in real improvements, and sometimes there is no improvement, or the children regress. It’s a sad situation, but desperate times demand desperate measures.”

By the way, behavioral therapy is the only proven treatment. It’s not glamorous. It’s the hardest work you’ll ever do. Sometimes progress comes in the tiniest of increments, you’ll wonder if you saw what you thought you saw. But if the therapy is designed and executed in an ethical way, you won’t have any trouble running your decisions through this rubric.

Posted in decision-making, early intervention

Companionship

By Peggy | April 22, 2010 |

A child enters your home and makes so much noise you can hardly stand it–then departs, leaving the house so quiet you think you’ll go mad. – Dr. J.A. Holmes

Call it “empty nest,” or as one girlfriend wrote recently, “going out of the parenting business,” most parents look to the day their child moves out with a mix of excitement and dread.

Make no mistake about it, Mark and I all but counted the days we thought/hoped/prayed we’d have our three children launched and we’d have the house back to ourselves.

Mark was killed in a traffic accident two-and-half years ago — so much for that plan.

For a long time after his death, I kept my focus on prepping that launch pad for Sam. Mark and I had learned that it’s often traumatic for adults with disabilities to get to age 40 or 50, having lived with their parents all that time, only to confront their deaths. Not only must those adults with disabilities cope with the loss, they also must learn new life skills in middle age. It’s tough stuff, or so we’d always been told.

About six months ago, though, I began to reflect on exactly what we were still shooting for. Sam moves into an apartment by himself, and I live in this house by myself, and we’re both alone for the next 20 years.

All so that he wouldn’t be hit with a double-whammy when it’s my time to go.

I asked the smartest person I knew whether I was being selfish in re-thinking this, or was my question a fair one — what do Sam and I really get by trading out 20 years of companionship?

Not much, she agreed, as long as I’m mindful that he still needs those skills.

It’s a funny place to be. Sam is taking college classes and working part-time. He manages his own finances. He drives. He helps out a lot around the house and farm. I do wish he cooked more, but we’ll get there. Although far less than what his brother has as a freshman at TCU, Sam has his own social life. (I will blog about this topic soon.)

I’ve been trying to ease us towards a “roommate” way of getting along, at my wise friend’s encouragement. We have a good life where we are right now.

As far as Sam’s launch pad, it’s still there if, for example, he got his dream job (computers at the National Weather Service) and got serious about that apartment he thinks about from time to time (mostly that he’ll have cable TV and high-speed internet, unlike now).

I haven’t lost track of the support he’d need to get out the door, if that’s his heart’s desire. It’s not much different, really, than what his brother and sister would need, just a little more of it.

Posted in adults with autism, social life

When a diagnosis does not predict

By Peggy | April 20, 2010 |

(first published 2/20/10)

A dear friend of Mark’s clipped an op-ed piece for me from The New York Times earlier this month. Another person might have sent me a link, or emailed the essay, but I liked Mary’s hand-written note and her careful clipping, which included the date at the top of the paper – a full citation.

In the piece, Roy Richard Grinker, the father of a teenage girl with autism, advocates for the elimination of Asperger’s and PDD-NOS as subsets of autism. He made a good case, and we can leave the outcome of what belongs in the diagnostic manual to the experts.

Grinker also made compelling argument that the spectrum diagnosis gives families little information about the future. Sam was diagnosed with autism when he was 4 years old by a skillful pediatrician. However, I was skeptical of the doctor’s prediction that Sam would be functioning well enough by the time he was 14 or 15 that most people wouldn’t know he had it. Grinker’s experience read much like ours. His daughter had all the symptoms for an autism diagnosis when she was 3 and is now a quirky high school senior.

Grinker wrote that if his daughter were diagnosed now, as a teen, she would likely be diagnosed with Asperger’s instead. We’ve had that same experience with Sam.

A diagnosis doesn’t predict the future, but early intervention – the kind that helps speech and language development, even if it has to be augmented – can have an effect. Well-planned and executed educational therapy is the only proven way to help kids with autism adapt.

And it doesn’t have to be 40 hours a week of one-on-one. We found that a house set up for enriched, structured play – the way Maria Montessori envisioned her school rooms – went a long, long way.

There may be potential in other treatments, but it is incumbent upon parents, like physicians, to first do no harm. That’s not as easy as you think. Parents who fear they are drowning will grasp at straws. We need to get better about communicating to parents what is proven and effective; and help them have faith in incremental progress. I remember how hard it was to have faith that Sam’s small bits of progress each day or week would add up over time. But really, truly, they do.

When Sam was diagnosed in April 1992, there were three other people in the room to support us besides the pediatrician. They swept in with resources and suggestions and contacts in the community. I don’t think I’ve ever fully appreciated what that support meant to us until just now, writing this. Thanks for doing it right, Dr. James Copeland, wherever you are.

Posted in early intervention, Montessori