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Peggy Heinkel-Wolfe

writing for parents of the bravest hearts

Peggy Heinkel-Wolfe

green writing for parents

rants

Informed consent

Sometimes a problem comes through our family’s front door, but because I’ve  solved a problem like it before, I don’t feel the worry and anxiety I used to. That’s one thing good about getting older – the been-there-and-done-that feeling gives you confidence.

Even when something new and different comes along, those things aren’t worrisome because there’s a sense you’ve seen some version of it before. Garage sales become eBay. The Sears catalog becomes Amazon. High school’s gossipy mean girls become Facebook.

I would argue, though, that sometimes we forget hard lessons when it suits us. We solved the problem of human experiments years ago and we need to remember the solution applies in many situations.

I wouldn’t have understood the meaning of informed consent if not for raising Sam. Some interventions offered to people with autism and their families can make a real mess. The first time we agreed to participate in a true experiment, I was very grateful for the care the psychology researcher had given, and the university’s institutional review board had reviewed, to make sure our family was fully informed of the risks. You might think an experiment to help Sam and his younger brother learn to play games together wouldn’t need to be deliberately thought through, but it does. Their budding relationship mattered.

I worry about the current ethos; technological innovations are driving a lot of our interactions these days. Eager tech start-ups are taking their barely formed innovations and throwing them out into the world to see what happens without giving any thought to informed consent for fragile families and communities.

For example, I’m not the first person to notice that we are in the middle of a giant experiment with self-driving vehicles–an experiment I don’t ever remember being asked whether I wanted to opt into. A few years ago on a cross country trip, I couldn’t see the driver behind the wheel of a sparkling new big rig bobtailing down the otherwise quiet interstate. As I passed by, I tried to see if the driver was just really short, like me. I didn’t see anyone in the rig. But mostly I remember being upset that if this was some kind of test drive, I was not notified and given the option to take another route. It doesn’t matter that the sale of the automobile is in terminal decline. This experiment needs to be thought through.

When I hear “disruption” or “creative destruction” or some other jargon, it’s been-there-done-that. The words are usually masking an experiment the inventor or company hopes will make them money, and taking everyone’s resilience for granted.

Let’s not.

 

A year to be more open and connected

Two years ago, after writing a news story about a few of our clever readers and what they learned achieving their New Year’s resolutions, I did mine differently. A year into my own experiment, I had learned so much that I shared it in a column.

That first goal to not buy anything (with reasonable exceptions for food and fixing things) reinforced a simpler, more sustainable life. My next resolution, “Yes, please,” was meant to be this year’s yang to last year’s yin of “no, thank you.”

The idea wasn’t that “yes, please” was permission to give into impulses or rationalized needs, but to push through whatever had been stopping me from trying something new. How else to see the world unless you push through to the other side? I made a list of about a dozen challenges that have been nagging for years; for example, learning to better maintain my bike, sew upholstery, broaden my computer skills, speak conversationally in another language, and make cheese. But if something new crossed my doorstep, like when my friend and brilliant textile artist Carla offered a day of indigo dyeing, I said “yes.” I said yes whenever I could.

Not only is life simpler and more sustainable, but it’s also richer and more fun.

That brought the social media expression of my life into sharp relief. For the coming year, I will co-opt Facebook’s stated mission, to be more open and connected, by quitting Facebook.

The main reason to shut down my account is one that has nagged me for a long time. Facebook’s real mission is nothing like its stated mission. For example, I’ve noticed there are people you cannot reach any other way than through Facebook. I’m not saying that’s a bad thing. In Texas, we might share a lemonade on the porch and we’re cordial, but we just don’t invite everyone inside. So I would argue that when you can’t reach someone except through Facebook, then you aren’t really connected at all. Facebook is managing your relationships for you through the veneer of being “open” and “connected.”

I set up the Family Room blog as a place to explore ideas related to living with autism. It’s interesting that most readers come here via a Facebook link and will return to Facebook to comment on the topic, rather than connecting below and creating our own community–which, by the way, is not open to exploitation by a third party because I filter and delete all that garbage.

That’s Facebook’s real mission. And, they “move fast and break things.” After I watched Frontline’s two-part special, The Facebook Dilemma, I couldn’t be a part of it anymore. American newspapers are struggling because Facebook (and similar businesses) got the rules changed: they can publish with impunity while newspapers must continue to publish responsibly. It’s expensive to be a responsible company. But it’s worth it because, for one, the truth is an absolute defense. And people don’t die in Myanmar because you got so big moving fast and breaking things that you can’t clean up after yourself anymore.

It took Sam a while to accept my decision. He was worried that my exit would affect his experience. I respect that very much. People with disabilities need help living lives that are more open and connected. He finds community activities through Facebook. Because he can scroll at his own pace, he can absorb and react to more news that people share. He’s not impervious to the third-party nonsense, but he’s not going to show up at a fake rally meant to destabilize the community.

I’ll still be on Twitter because I use the platform for my job and I can’t escape it. And I know my departure from Facebook may affect my coworkers, so I will work to ameliorate that. I hope that readers who want to continue to be part of Family Room will use the green button below to bookmark the blog and come back once a month or so. This blog isn’t going away even though the Facebook teasers will.

My first objective will be to use my words to be more open and connected. Family Room will be one place to make that happen, along with all of the other ways we’ve always had to connect with each other (insert mail-telephone-plus-ruby-slippers icons here!)

My second objective will be that when I have something to share, I will share it with the person I believe would appreciate it most.

My third objective will be actively listening to others in the coming days and weeks. Because the best way to connect is to respond.

Sam taught me that.

Other lessons stated out loud

“Our children are not us … and yet we are our children; the reality of being a parent never leaves those who have braved the metamorphosis.” – Andrew Solomon, Far From the Tree.

 There are so many lessons from life with a child with autism, it seems important to share at least some of them.

I have two other children who make it into these pages in ancillary ways, but that is not an accurate reflection – at all – of their presence in our family.

Many things that happen in our lives are examined in thoughtful ways, but not everything that happens to our family gets lived out loud. I want my children to have their own lives.

For this little essay, I’m making an exception. Two years ago around Halloween, something happened to Michael that needs to be lived out loud.

He took a date to a costume party, and he’s alive today because technically he and the girl weren’t “dating.”

(Confession: I don’t understand kids and dating these days.)

He had graduated college earlier that year. His date was in her senior year, so the party they attended was full of college-aged kids.

As they were about to leave, someone handed his date a glass of champagne. She wasn’t a fan, so they shared it.

His date lived about 30 minutes out of town. A family friend happened to be at the party, so she rode home with him.

Michael hopped in his car and drove the 5-minute trip back to his apartment.

A minute or two after he got home, he knew he was in trouble. He stumbled to his room, vomited, passed out on his bed, and woke up at noon, although he was groggy and out of sorts all day.

His date, by the way, passed out on the way home. The family friend had to carry her to the house.

Michael didn’t tell me what had happened to them until weeks later.

The glass they shared, as near as he can guess, was laced with something meant to knock her out.

(Confession: I asked him the classic victim-blaming question, don’t you all know not to accept a drink like that, along with a thousand other questions that had few satisfying answers. It wasn’t hard to imagine a drastically different outcome had he driven his date home.)

This was not the first time something horrible happened to Michael and I was not to find out until hours after the real danger had passed.

That is how it is when you send your children out into the world.

It is not a good feeling.

Some of us parented our kids to know that life is not a stage and all the men and women in it merely players.

Clearly, some parents did not.

Reflections on nine years and three days

Saturday we took care of errands ending up at the grocery store just before lunchtime. About halfway through our trip, we saw an assistant manager leading three new trainees around the store, pointing out the location of various items.

Sam stopped and watched for a second. Then he announced that three days before was the ninth anniversary of his date of hire.

Wow. Time flies.

The good people at Albertsons hired him as a courtesy clerk the summer after he graduated high school. He had help from a job coach, hired by the state, to make sure he got off to a good start.

Sam has received lots of raises through the years but he hasn’t sought promotions to jobs like checker or stocker because he doesn’t feel the kinds of problems they manage are the kinds of problems he could solve quickly.

 

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His favorite part of the job is retrieving carts. If you catch him heading out the door to fetch carts, you will see him ride a cart like a skateboard to the far side of the parking lot. He tells me it’s a move he invented.

Sometimes, he says, the managers tell him there’s enough carts for now, and he needs to come back inside to help sack groceries.

He’s a good sacker, but he he thinks that the speedy sacking champions who used to make an appearance on The Late Show with David Letterman are just crazy.

Although I don’t have it on any authority at all, the store seemed too quiet after Wal-Mart opened at Rayzor Ranch. But recently, it’s been busy no matter what day or time I visit the store. I don’t know the reason, although I have my theories. People are struggling with the construction on University Drive. And more than once I’ve heard someone say they are tired of the crazy parking in the lot outside Kroger.

Who knows how much longer he’ll be there. He just headed out the door right now to walk to work. He’s a cheerful, reliable employee. When we were shopping yesterday, everyone, including the store manager, stopped to say hello.

As wonderful as working at Albertsons has been, and will likely continue to be, Sam should be celebrating his second or third anniversary in the tech sector. That’s what his degree is in. That’s where his talents are. That’s what the contract says with his new job coach.

The IT sector is desperate for employees. Sam’s brother, Michael, didn’t major in IT, and yet that is where he landed. It’s hard not to feel irony’s burn. We worked so hard to get to this point. Sam’s ready for the world. But the world isn’t ready for him at all.

 

Out like a lion

Tomorrow is the first day of April and the first day of autism awareness month. I don’t think I will participate in the blue-washing this year.

This month has been filled with numbers. I was going to funny-blog about one of them — passing the 2,000-mile mark on my running odometer — but now I don’t have the heart.

I distance run because my friend, Susan Sullivan, got sick. She is known to many as Runner Susan, for her running blog that turned into a shale blog for a bit after she got sick. She had to have a hysterectomy because her girl parts were filled with tumors. I told her, when she was recovering, that I would run with her when she got well. I’d already lost some of my girl parts by then. More than two years later and we are still running together.

Ever since Sam was a toddler, I’ve been running a different kind of run with Sam. When he was born, autism was rare, about 1 in 10,000 to 15,000 births. This month, the Centers for Disease Control and Prevention came out with a new estimate: 1 in 68.

That number represents a financial burden that will crush us. The estimated lifetime cost of raising and caring for a person with autism is $1.4 million, compared to about $250,000 to raise a normal child.  When today’s kids with autism are adults, there will be just 67 other people for each to help shoulder the burden.

If our kids are the canaries in this coal mine of environmental assaults, this run-away incidence rate clearly hasn’t been the bitch-slap policymakers need. I cannot understand why they can bring themselves to regulate with the precautionary principle sometimes and not others.

If the need is for more immediate threats, like people, even kids, getting cancer, that doesn’t seem to be driving the message home either. In the Virginia Environmental Law Journal, University of Texas professor Rachael Rawlins had things to say this month about the health impacts of shale development on policymakers. The UT press office summed it thusly:

Rawlins examines the Texas Department of State Health Service’s cancer cluster analysis conducted in response to parents’ concerns about seemingly excessive cases of childhood leukemia in the suburban community of Flower Mound. Although the state acknowledged that gas industry emissions include benzene, a carcinogen known to be associated with leukemia, the state dismissed further analysis with a preliminary study after concluding that it was not able to confirm with 99 percent certainty that cancer rates were significantly elevated in Flower Mound, Rawlins writes. Rawlins explains that, even when the state confirmed elevated rates of breast cancer with 99 percent certainty, it was too quick to dismiss the possibility of an association with toxic emissions.

The article reports on a reanalysis of the state’s data prepared by UT Austin researchers in collaboration with Dr. Maria Morandi, a faculty affiliate and former research professor from the Center for Environmental Health Sciences at the University of Montana. The reanalysis found, with 95 percent certainty, that rates of childhood leukemia and childhood lymphoma in Flower Mound are significantly higher than expected; there is only a 1 in 20 chance that the difference is random. In science, 95 percent certainty is considered the norm.

(Oh, yeah, the old breast cancer story. Now where did Josh Fox and the Merchants of Doubt over at the Associated Press move the boxing ring for that story again? Wait, wait, don’t tell me it’s time for my annual defense again.)

I’m feeling dark today. March is going out like a lion and I just don’t feel like lighting it up blue. But you all go ahead and have fun.

Blue Floofie, created by Maddy Mathis

Blue Floofie, created by Maddy Mathis

Vaccines. Just do it.

Until I finished Seth Mnookin’s book, The Panic Virus, it never occurred to me that all of the autism community could face backlash in the future if the anti-vaccine movement continues to take its toll.

I don’t blame vaccines for autism. Scientists have been looking for connections for years and they haven’t found any. Autism rates are continuing to rise even though they removed the mercury preservative from vaccines years ago. And, the study that supposedly linked autism to the MMR vaccine was compromised. (That’s the short version of the science, for the exhaustive, researched version, reach for Mnookin’s book.) It’s distressing that people who should know better, and people in positions of trust, promote parent choice to withhold vaccines as somehow cautious and thoughtful.

It’s not.

This week, we learned of a serious local outbreak of the measles traced to the members of a church that holds an anti-vaccine position.

You wouldn’t take your child to the doctor and then not follow the treatment protocol. That would be heartless and irresponsible. Some people get as mad as a bumped bed of fire ants thinking about changes that could come because of the Affordable Care Act — mercy, you might have to wait for care, or be denied a high-cost treatment option in favor of something less expensive. But somehow you want a choice now, passing on a well-established protocol that prevents some of childhood’s killer diseases? That’s irrational, and irresponsible.

How irresponsible? Derek Bartholomaus keeps a body count.

Link-and-Twist: ethical reporting on health impacts and breast cancer

Mark had this rule we lived by, and we did our best to pass on to the kids. If something makes you mad, don’t do anything about it for at least 24 hours. Oh, The Places You’ll Go! when you don’t go to your angry place. Usually, we found that we woke up the next day and couldn’t remember why we were bothered. Or, if something was still wrong, we could think it through and get it fixed.

Editors have a rule that, when someone asks to reprint a story, they have to print the whole thing. That’s smart. It keeps people from misappropriating your work, recasting it in a shape that fits them, or just flat-out stealing it.

For a while now, when it comes to my long-ago story on local breast cancer rates, I think I’ve been applying too much of Mark’s rule, and not nearly enough of the editors rule. Here’s the rub: if a blog post is misappropriating a story, a link to the whole doesn’t fix that. In the case of the breast cancer story, there are too many of these supposed “stories-behind-the-story” and “stories-around-the-story” that link-and-twist.

Bud Kennedy of the Fort Worth Star-Telegram passed on a tweet by George P. Bush today that shows a certain level of determination by a handful in Wild West Cyber Space to keep twisting that story.

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So, I will do my duty and offer my annual defense (here is last year’s) of what was a damn good story in summer 2011.

I think it started when Robert F. Kennedy, Jr. made a short reference to it in an essay on Huffington Post that summer. He didn’t boil it down quite right. It grated on me, but his heart seemed to be in the right place and I thought, who am I to call up Mr. Kennedy and say, “Dude, linking is not enough, that summary wasn’t right, fix it.” After Josh Fox referenced  the story in 2012 in “The Sky is Pink,” an Associated Press reporter in Pennsylvania got a Texas-sized hitch in his git-along over it.

How huge? I endured a week of emails as this reporter tried, but couldn’t (or wouldn’t), find the original report with the Centers for Disease Control and Prevention about the concern over breast cancer rates in North Texas and flat-out ignored the report on the uptick in breast cancers in Flower Mound. Then, he tried to cook up numbers of his own through the Texas Cancer Registry and fell flat.

That clunky AP story should not derail this important conversation about breast cancer and the North Texas environment, because it offers no numbers, just odd quotes of alternate experts a full year after the original story ran.

Meanwhile, Florence Williams masterful book, Breasts: A Natural and Unnatural History, has stepped in to keep the conversation going in the right direction. Or so I hope. She reminds us that as little as 10 percent of breast cancers are straight-up inherited. Most are triggered by something in the environment, either lifestyle, surroundings or both. If you haven’t read her book, shut up about what you think about breast cancer in the environment because, to those of us who have read the book, you will just sound like an idiot until you do.

In other words, for a breast book, it’s seminal. (You’re welcome, Ms. Williams.)

The good people of the Barnett Shale know what those breast cancer numbers meant in the original story — a friend, a neighbor, a colleague, a loved one who is suffering. One fellow in Double Oak so took to heart that spun-up criticism by the AP that he devoted a chapter in his book about it. Tom Hayden is a retired math professor, not an epidemiologist, but, Hey Martha! (that’s a dog-whistle to you budding epidemiologists out there) if he didn’t find something interesting: He compared breast cancer rates for two Texas cities about the same size, Fort Worth (shale) and Austin (no shale), and did the math. He appears to have found statistically significant differences in the rates, especially when examined by race.

I want to share one last thought for the really smart readers out there, and for those journalists who remember graduate school lessons about things like hegemony and logical fallacies.

Ask yourself this when you are reading a news story about the health impacts of the shale boom: does the underlying theme in this story assume that not just higher cancer rates, but statistically significant higher cancer rates, are necessary in order to change the course of this policy or practice?

There are scores of other health impacts, too, and they can be costly. To bring such a level of skepticism about health impacts and cancer risks to writing a story? I won’t do it. That’s just messed up.

Moreover, good journalists are not stenographers. We aren’t supposed to sit down and re-write the executive summary proffered by the bureaucrat and call it a day. We’re supposed to be in the community, listening, watching. We’re supposed work hard to be the light on the dark corner, the first draft of history, the dot-connector, the bellwether.

That’s what I did with the breast cancer story. All kinds of people read the news to understand what’s happening in their community and to better inform their work, and that includes scientists. The really smart ones are looking for clues to the next paradigm shift.

So, after the original story ran in 2011, maybe that’s why UT-Southwestern called me and asked for reprints of it. They told me they wanted copies for their team.

Doesn’t sound at all to me like my sources thought I got the story wrong.

There is a still a lot of work to be done in Texas. Tens of thousands of wells have been dug and those of us who drive the back roads and talk to people and know the patterns of history have got a pretty good idea what’s coming next.

The rest of this breast cancer conversation has to be taken up by you smart and discerning readers out there. You need to keep it going in the right direction.

I just got back from The Mayborn Nonfiction Conference and I need to get back to work. But if I have to, I’ll be back next summer for my annual defense of the breast cancer story.

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Treatment and prevention, or blue-washing?

I don’t think we, as a nation of educated people, as a country of incredible resources, as a culture, as the ostensible leader of the  so-called free world, are very good at fixing problems.  Many problems we had when I was a young woman are still around. Some have gotten worse.

We think we’ve made progress because we talk about our problems. Families get support in the community to raise their kids with autism, instead of quietly sending them away to an institution. Women get breast exams and mammograms instead of being embarrassed to discuss concerns with their doctor. People recycle their bottles and cans instead of sending them to the landfill.

We’re being green. We’re wearing pink. We’re lighting it up blue.We’re aware.

Good things all, but they don’t have anything to do with preventing some serious and growing problems.

The occasional greenwashing we get from some environmental groups keeps us from solving problems. The Sierra Club promoted natural gas until they were against it. Can you imagine where we would be now if they, the Natural Resources Defense Council and the Environmental Defense Fund had been more worried about an ounce of prevention from renewables than that compromise for a pound of coal-powered cure?

Then there’s the Komen problem. Many have been trying to cast a brighter light on that group’s pinkwashing for a long time. All these promotional tie-ins and three-days and commercials and messages have actually confused some people into thinking that finding breast cancer early is the same as preventing it.

Uh, no. It’s time to pay for prevention. My mother had breast cancer. Let’s see what we can do to prevent my daughter from getting it.

What of this burgeoning world of autism research and advocacy? When Sam was diagnosed, we were told that he was one in 10,000 or more. Autism was rare. I didn’t know anyone else whose child had autism. Now we’re at 1 in 88. It takes more than two hands to count all the kids with autism that grew up here in the past 15-20 years in Argyle, a town of 3,000.

Aren’t you afraid? You should be afraid. I am. You should be very afraid. Your-stomach-up-in-your-chest afraid.

People who want to help are trying. (And if you know what the day-in-the-life for families of kids with autism is like, finding time for that is its own kind of miracle.) They are raising money and advocating for more research.

When I visited the Autism Speaks website to look at the latest in research, I got kicked to pop-up page, insisting that I sign a petition about insurance before letting me land on the web page I sought.

I get that. Parents need help paying for treatment. But it was in-your-face. It was slick. It was just a little too Komen for me.

I hope it’s just because they have some really good people working for them. I hope they don’t get lost. I hope we aren’t in for a generation of blue-washing.

No amount of blue light bulbs you buy at Lowe’s is going to light this darkness.

We need prevention, and we need it now.

 

Being clear about vaccines and autism

Recently, I heard from a reader who thought one of the take-away messages from See Sam Run was that I believed vaccinations caused Sam’s autism.

I don’t believe that. I believe Sam’s autism began during pregnancy and he showed signs of it as a newborn — so much so that my father picked up on it in Sam’s first week of life. I doubt our family will ever know what caused the autism. But I am glad that researchers are looking both at genetics and environmental triggers. Chances are, we are going to learn that it isn’t the “dose that makes the poison,” but that some women and their babies are more susceptible to endocrine disruption. 
Although, a concept in Florence Williams’ new book, “Breasts: A Natural and Unnatural History,” gave me pause. She outlined research that has shown women bodies will unload their chemical burden on their first babies. It’s awful to think that is possible, but I know what I was exposed to as a teenager, and in my 20s, and neither were ideal baby-making environments.
For parents who have read a lot on the vaccine topic, I recommend weighing all that online “research” against the summary of research in Paul Offit’s “Autism’s False Prophets.”
And, to put your mind at ease about vaccines for your baby, you can ask your pediatrician space them out and that they be given without thimerosal, that mercury preservative.
All our children were vaccinated with everything. I wouldn’t dare take a chance. I’m so sad that people aren’t vaccinating — either for fear of autism or because they are too poor for good preventive health care. Babies are dying of whooping cough. That’s just so preventable.
Really.

The bootstraps paradigm (and how Texas can’t get it up)

My sister, Chris, calls most Sunday nights. The routine started not long after Mark died. After a year or so, I told her she really could stop checking on me, but she calls anyways. We catch up and have a laugh or two. Last night she asked what’s new and after I waxed about my new shoes, I shared what I learned Saturday at a local workshop on supported employment put on by The Arc.

Chris didn’t miss a beat when I shared an eye-popping statistic with her about Texas and its Medicaid waiver programs for people with disabilities.

“Texas really means that pull-yourself-up-by-the-bootstraps thing, don’t they?”

Yes, they do.

Even if you have cerebral palsy.Even if you have a C1-C7 spinal injury. Sheesh. Even if you have no arms.

During the workshop, we heard from both the family and the supervisor of a man with autism. He has worked at the Austin Hilton downtown for nearly five years as a hotel steward. The family was incredibly inventive and determined. The hotel management is both smart and compassionate. The man is able to speak through a bit of sign language, and it has worked out fine. The hotel alluded to the story of another man on their staff who has autism (I know this story from the people at Marbridge), so this wasn’t a one-time thing for them, either.

The main thing I learned is that “social service” in Texas is DIY.

The mother of the hotel steward also is an advocate. She passed out a fact sheet that listed how many people in Texas were receiving employment services through the state’s Medicaid waiver programs. (Read the material in the link to understand the nuances. But suffice to say, if a person with a disability needs services, you can apply for help through one of these programs instead of checking into a state-supported living center.)

School officials and other advocates advised Mark and me to put Sam on the waiting list when we moved to Texas. They said it could well take 15-20 years for him to work his way up the list. If he were receiving services through CLASS, the program that would best fit his needs, he would join all the other people in Texas receiving employment services through this waiver program. And that number is …

2

You read that right. Two.

In a state of 25.6 million people, we have found the resources to help just two people with disabilities, people like Sam, with employment services.  To be fair, there are more people getting employment services in the other waiver programs, but not very many — about 500 or so, in the entire state. I would bet that most, if not all, of them are working in sheltered workshops. In other words, still some distance from a full, independent life in the community.

The hotel steward’s mother described the same problem I had last year when I called DARS, another place to find help with employment services. DARS told her, too, that she had a better chance of helping her son find a job than they did. When she called the various employment support service groups, she confirmed what DARS had told her. Most of the vendors were out of business. To get started, her son’s ABA therapist became certified as a DARS provider so he could be the job coach as he learned to be a hotel steward.

Dear Texas: I reject the notion that this is benign neglect. What does it really cost the state to neglect this pool of workers? Sincerely Yours. P

The bottom line for our family is what I have suspected for some time. I have to go along with Sam, as I have several times already, in his job search. He stands a much better chance pulling up his bootstraps if I put mine on, too.

 

 

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