Lend your experience

By Peggy | August 23, 2010 |

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.

Posted in decision-making, health, hope

Question authority

By Peggy | June 12, 2010 |

I’m on the hook for two presentations at the Texas Parent-to-Parent conference in San Marcos June 24-26. In one presentation I’ll be working with Shahla Rosales, a professor of applied behavior analysis at the University of North Texas, on ethics in treatment decisions. She’s come up with six guideposts for clinicians. She shared them with me a year ago and they resonated so wonderfully for me, as a parent, that I proposed we offer the same talk for parents at P2P.

I’m so lucky that she said yes.
I’ll be teeing up the talk, sharing some of those school-of-hard-knocks stories that seem to define the world of parents who have children with disabilities. I’ll focus on some of the hazards in our attitudes and fallacies of thinking. Shahla encouraged me to key in on one common fallacy of reasoning that clinicians bring to the table with treatment decisions — appealing to the wrong authority.
Treatment choices should be evidence-based, but not all evidence is created equal, Shahla reminded me. Parents are sometimes in a better position to vet the rigor of evidence simply by questioning its authority with clinicians. Simply put, ask them to explain it to you.
Case in point: when Sam first began receiving services in preschool (I shared this story in my book), I was lost during an ARD/IEP meeting that went over test results. The speech therapist said that Sam could not touch his nose when he was asked. I asked her why that was important. From my perspective, as a young mom, I knew Sam “couldn’t do” things. That was why we were there in the first place. The teachers and therapists developed an exhaustive list of things Sam wasn’t doing, which did me no good. I could have written the list out for them and saved them a lot of time. But I asked the therapist to explain why he wasn’t doing some of those things, and was stunned when she couldn’t answer me.
Of course, she was embarrassed.
She followed through, however. She called up a former professor and called me several days later with the answer.
She said that most young children learn words from context. If you point out the zit on your nose, talk about blowing your nose, get a tissue to wipe your nose, or bump your nose on the door, and make some drama over that, most children learn that “nose” belongs to that sticking-out thing on your face. I recognized that Sam needed to be told things directly to learn them. After that telephone conversation, I stuck a computer label identifying dozens of things in the house for Sam. I also made him a shoe box full of vocabulary cards.
That and other direct interventions helped his early vocabulary explode.
I try to remember to be brave and ask questions and have things explained to me, because it never fails in creating a better environment for learning.
The hippies got that one right: question authority.
Posted in decision-making, language

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

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