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

Thursday, April 29, 2010

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.

Monday, April 26, 2010

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.

Saturday, April 24, 2010

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:

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

Friday, April 23, 2010

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.

Thursday, April 22, 2010

Parental car wrecks

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.

Wednesday, April 21, 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.

Monday, April 19, 2010

When a diagnosis does not predict

(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.

Risk-taking ... See Sam Drive

Recently, Dan Burns (author of Saving Ben, A father's story of autism) told me about a time that his son got ahead of him on the bike trail and was missing for a while. Nothing was wrong in Ben's world, but for the rest of the adults in his life -- who were accustomed to keeping much closer track of Ben -- it was a scary time.

Because both Dan and Ben now have GPS on their wireless phones, that worry has been allayed. But hearing the story made me think about how important it is to parents of adults with autism to stay hopeful.

Mark and I have two other children -- both teenagers -- whom we also worried about, but in a different way. We knew they would be on their own someday. We had to let the rope out bit by bit, allowing them the risks and chances. Sometimes, with Sam, we had to remind ourselves he was entitled to his risks and chances, too.

Mark's hope for Sam had always been of the most audacious kind. He watched Sam learn to ride a bicycle, and to ride a horse. Sam has been riding horse at Riding Unlimited in Ponder since he was 5. He's Class A now, competing in Chisholm Challenge at the Fort Worth Stock Show and Rodeo, and in the Special Olympics, in events that walk, trot and canter.

Once, in the middle of the show ring about five years ago, we both watched Sam as another rider almost lost control of her mount. Unlike the other riders, Sam saw what was going on and steered his horse away from the trouble. Mark was encouraged by that.

Over the years we had learned to watch for signs of Sam's readiness, and then made our move to try new things. Mark decided early on that Sam could learn to drive. He started him on our tractor … mowing around the pecan trees in our small orchard.

Now, we’ve had to repair a few sections of fence, and a couple of trees took fatal hits, but Sam got the hang of it – that sense of moving through space, and how you occupy space in a vehicle, keeping an eye of what’s in front of you, and what’s behind you. Mark decided Sam was ready to mow for other people.

Mark would make sure Sam knew the route to wherever they were mowing, and he would set Sam off down the street, and follow behind in the pickup. Mark would mow the perimeter, scope out any hazards, and set Sam up to finish the job. Sam did well. Sometimes the tractor gave him fits, but he learned to cope with loose wires and clogged filters and he built a small, but loyal clientele.

One day, Mark followed Sam on a route to a new customer and watched as Sam turned the tractor left in front of an oncoming car. Mark was so upset that day. He realized that he’d forgotten a critical part of learning to drive – you must recognize that other drivers might be thinking differently than you. I asked Mark whether the other driver had to slow to let Sam make the turn, and he said that he had not. But it bothered him for days, even weeks, that Sam did not slow before the turn. He was skeptical that Sam had grown to be that good of a judge of time and space, and someday he could do something that would really freak out other drivers.

We weren’t sure what to do next, but we weren’t quite ready to give up. Maybe there would be another sign of readiness.

Meanwhile, Sam was not sure. He told us quite pointedly around his 16th birthday that he was not ready to learn to drive, so we didn’t push him.

Mark managed to score an old Volvo station wagon, for free, the Christmas after Sam’s 16th birthday. Mark thought Sam’s fear might wane if he had a car of his own, maybe even to just drive around the orchard. When Sam pulled a set of car keys out of his Christmas stocking, his younger brother and sister gasped, and ran to the window to see. Yes, Sam, Mark told him -- we got you a car for Christmas. Sam went to the window, and then turned red-faced and put the keys back the in the bag. He was probably the only 16-year-old in modern history who got a car for Christmas and was angry about it.

He never drove that car. Eventually, Mark gave up, and started harvesting parts out of the car to fix our two other Volvos – even though they were three different years and models, the parts were as interchangeable as Legos.

But two years ago, when Sam was riding the SPAN bus back and forth to work and to his classes at North Central Texas College [and when SPAN couldn’t drive him, and the schedule was driving us ragged], he decided he was ready to learn – his younger brother, Michael, was learning to drive, too, and Sam didn’t want to get behind his little brother.

Sam studied the driver’s handbook and passed the written test with one question to spare. We took him practice driving for months. Mark gave a lot of thought to the lessons, and there were still some terrifying moments in the early days, but as Sam got the hang of it, we could tell he would be alright. But just to make sure it wasn’t just our opinion, we asked Baylor Rehabilitation to help. One of their occupational therapists is a driving instructor and Texas Rehabilitation Services helped us get more than 20 hours of instruction from her, too. She said Sam was a good driver and would be fine.

And he has been fine. He’s driven for two years now without incident. Mark taught him the Smith system – a way of looking ahead for hazards on the road that he learned as a trucker in the summer. Of course, Baylor’s instructor helped inculcate Sam, too, with all those little rules of the road that the rest of us violate all the time – like stopping behind the stop line at intersections and keeping one car length between us and the car in front for every 10 mph of speed. A co-worker of mine drove from Denton to our house several months ago and recognized Sam’s car behind him. Gary joked with me, saying your son will never rear-end someone. He kept five car lengths between us the whole way … he never waivered.

Mark was killed in a traffic accident before Sam took his driving test – and passed – on the first try to get his license. But as clearly as I see the driving examiner, and Sam stepping happily out of the car that day, I can imagine Mark’s smile, too. In my mind’s eye, Mark’s smile was this wonderful mix of fatherly pride, and triumph --- knowing that he had planted the seeds years before and waited patiently for Sam to learn and grow, and that sometimes he had to nudge him along, taking the chances, and waiting for Sam to respond. Mark was always thinking it through, because however long it was going to take to achieve this milestone of independence, we were going to do what we had always done … we’d just do what it takes … to see Sam drive.

Saturday, April 17, 2010

April is autism awareness month

A few days after my father first held my newborn son, he whispered to my mother his fear for our baby’s health, a fear that would prove prophetic.

Our oldest son, Sam, was born with autism.

At the time, my mother had cautioned my father: how could he know for certain what Sam’s faraway eyes and fussiness meant?

My father had years of experience as a dentist treating patients with disabilities who lived at the long-term care center in our hometown. He needed more than his hunch before the word could be said out loud.

As a result, my husband and I anguished for almost five years, asking many health and education professionals for answers that could help our son. A developmental pediatrician finally made the diagnosis in 1993.

Since our son’s diagnosis, some doctors have gotten bolder, looking for autism earlier in a child’s life. The Checklist for Autism in Toddlers, or CHAT, has proven helpful screening children at 18 months old. But there is no blood test, x-ray, or magnetic image that marks autism. The physical evidence found in the autistic brain, thus far, can only been seen forensically.

The lifelong struggle with language and social development distinguish the disability, making health and education professionals hesitate to make the call with children. But that also leaves room for Monday morning quarterbacks to ignorantly blame parents for a child’s behavior and dismiss them as brats.

Researchers are now looking for markers as soon as infancy. A fussy baby could have more than colic, and doctors may soon be able to offer something more to frantic parents. Perhaps the most promising study yet has come out of Canada, where researchers are testing eye movements of babies to determine whether that, too, could be a predictor for autism.

However, there remains no cure. Once a toddler has been identified as at risk of having autism, the real work begins. Families need support and services to help affected children adapt their Spartan world to ours; and communities must invest in those services in order to make an early diagnosis realize its true worth.

Our family, and the millions of others touched by autism, can testify that the investment is money well-spent. Every day, employers and educators are unlocking the extraordinary talents of individuals with autism, who in turn give to us a fresh outlook on what really matters.