Random Thoughts from Possum Kingdom 20K: The Reprise
Run long enough in the woods and the flowers that were budding on the way out will be in full bloom on the way home. When you study the trail map, follow the arrows and let Siri help, a 20K is a real 20K. But after the runners spread out and you are alone in the woods, you will still doubt yourself, although you can hear the birds much better. RunKeeper will tell you the elevations of all four hills you climbed, but it’s best to not know such details until after the race is done. Sand is for horses. But a Bob Ross tattoo on a man’s calf kind of works. Two years of trail racing with RunnerSusan and that jar of honey and organic bamboo shirt still makes excellent swag.
This beauty is just down the road.
WPA bridge over the Brazos River, Graford, Texas, April 12, 2014
And while we were there taking pictures, a guy caught an excellent bass.
Overheard in the Wolfe House #265
Peggy (as Sam set up his phone GPS in his new car dock): Will Siri give us directions?
Sam: Droid doesn’t have Siri, Mom.
Peggy: Debbie then?
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
Overheard in the Wolfe House #264
(specifically, overheard at the grandparents’ house)
Aunt Chris: Did you see the movie “Frozen”?
Sam: Yeah. It was cool.
Black Bottom Cupcakes
This weekend, probiotic potions practice including starting a batch of soy sauce and making a batch of cream cheese.
The soy sauce will probably be done about Christmas, but the cream cheese is ready to go. I promised Michael some of it would go into an old family favorite, black bottom cupcakes. It’s so yummy. And was as easy to make as yogurt, although there are more complex recipes for cream cheese that are in the queue.
I got this recipe from a co-worker at a summer job I worked between my freshman and sophomore years, in an industrial laundry. And that is another story best told over a beer.
Black Bottom Cupcakes
Cream Cheese topping
1/2 lb cream cheese
1/3 cup sugar
1/2 tsp vanilla
1 egg
1/8 tsp. salt
1 cup chocolate chips
Cake batter
1 1/2 cup flour
1/4 cup cocoa
1 tsp. baking soda
1/3 cup oil
1 cup sugar
1/2 tsp. salt
1 cup water
1 T. vinegar
1 tsp. vanilla
Directions
Beat cream cheese until smooth. Add egg, sugar, salt, vanilla and beat well. Stir in chocolate chips and set aside.
Stir together dry ingredients of cake batter. Add water, oil, vinegar, vanilla and beat well.
Line muffin tins with baking cups and fill half way with cake batter. Top with cheese mixture and bake at 350 degrees for 30-35 minutes.
Probiotic Potion Master (in training)
I wish that the amount of awareness and research into autism and the gut was part of our lives when Sam was a baby.
I can’t help but think things would be different. I touched on some of the problems that emerged when he was a toddler in See Sam Run. But there was never, ever any kind of meaningful conversation with his pediatrician until he reached his teens.
By then, Sam’s food preferences could just as easily fall into the category of an eating disorder as be seen for what they likely were — an adaptation to what gave him bellyaches on a scale that I don’t think the rest of us could tolerate.
But Mark and I were ready to take out a second mortgage on the house so that Sam and I could spend the summer at an in-patient treatment program at Ohio State when Sam was 14 or 15 years old. Sam had shot up at that point, but he wasn’t eating meat. He looked every bit as undernourished as he was, especially his skinny little quads and calves. The program helped get kids with autism to expand their eating choices. Another parent on the autism journey whom I really trust had recommended it.
Fortunately for us, the treatment director recommended that we rule out Celiac disease before we got there, since that was something they typically did before they started treatment anyways. Sam couldn’t eat any gluten for a week before the blood draw, and he got really hungry.
He decided he could eat meat after all. He like sausage the best. He also figured out ways to taste and try new things to decide for himself whether he liked them. We decided that was enough of a breakthrough not to hock the house.
Even though they were able to rule out Celiac, the test results hinted at trouble. We talked about it, but there really was nothing more to be done, the doctor said.
When it was time for him to transition from his pediatrician to the family physician, she asked me if I had any concerns for him. Again, I tried to open the door to talk about his digestive troubles. She said she didn’t know anything about it and that was the end of that.
The issue has re-emerged for him and this time we are going after it a lot more informed. When he was a preschooler and would only eat cereal morning, noon and night, we fortified his milk with l. acidolphilus. I’d always made yogurt over the years, although Sam wasn’t always a big fan. We had some inkling of what needed to be done to help his digestive system, but we didn’t know to what degree.
My first hint, honestly, that there was a much, much bigger world of beneficial bacteria out there was when my daughter, Paige, started making us kimchi and told me it was a health food.
Light bulb.
So, now we are all about the fermenting here at the Wolfe House. I started with Creole cream cheese. I tried not to channel my home economics teacher as I sat that milk out on the counter for a day and half. But it was wonderful. I made crepes and filled them with the cheese topped them with warm strawberry jam. Sam likes cheesecake so I thought it wouldn’t be too much of a reach, but it was. Oh, well, more for Michael and me.
Plus, I had a whole bunch of the kind of whey the author of Mastering Fermentation likes to use in her recipes. Next up was probiotic ketchup (a hit) and hummus (good, but a miss for Sam.)
When we make our salad dressings now — Sam is a huge salad fan — we use vinegar with the mother. (Just Google it. The point is to eat food that’s alive.)
Judy Thurston over at Hidden Valley Dairy suggested keifer (another hit) and I just ordered supplies I need to make soy sauce and regular cream cheese.
I want to get good at making cheese so that I can make the one he loves: Parmesan.
I’m still working on getting supplies for what I’m sure will be a big hit when I get it done: salami.
No kidding, it’s fermented. Is that why sausage was the breakthrough for him 10 years ago?
Well, back to the kitchen. Got more potions work to do.
Overheard in the Wolfe House #263
Sam: By the way …
Peggy: What?
Sam: Do you want to know something?
Peggy: Yes, I do.
See Sam Drive: Lost in mid-cities
If I ever doubted that no good deed goes unpunished, the lesson was reinforced today.
Michael had a job interview and asked to borrow the truck, since the air conditioning is out in his car.
(This is February, you say. This is Texas, I tell you.)
So out of his routine was he, that when he returned to the truck after the interview, he realized he locked the key inside. He called to ask whether there was a hide-a-key.
(No, son, a hide-a-key is something parents make their kids do with their own car.)
He didn’t want to pay for a locksmith if Sam could come with a spare. There was time. Sam loaded directions in the GPS on his phone and headed out.
Sam is not a fan of I-35. E or W. He took State Highway 114 and headed south on Precinct Line Road to where Michael was, in North Richland Hills. That was probably a mistake. Maybe U.S. Highway 377 would have been better. He got lost somewhere in Keller — so lost that he pulled over and called police to get help. They came and gave him directions.
Sam made it to the parking lot where Michael was waiting and the two of them were supposed to follow each other to I-820, where they would part ways at I-35W.
I thought all was well and then Michael called me again.
“I lost him,” he said.
Every parent of a child with autism knows this terror. And now his brother was learning it, too. Michael recounted as much of the situation as he could, starting with the moment he realized Sam was heading down State Highway 183 the wrong way, and I was at a loss of what to suggest next.
Sam had turned his phone off to save battery life. That worried us both. Not only was he not communicating with us, we knew “Siri” wasn’t giving him directions home.
“Call the police. Make a report,” I told him. “We can’t do this. We need the village.”
A co-worker (one of several that talked me off the ledge today) offered to take me home and Shahla provided a bit of support via text. Meanwhile, Michael was making a report with the police. I so hoped that Sam would be parked in the driveway when I got home, but he wasn’t.
I put an alert on Facebook and started to regroup. I would take Michael’s car and meet him and the police in North Richland Hills where they were making a missing persons report. (Because Sam has autism, it would have gone out immediately.)
And then Sam came down the driveway. I called Michael. The police shredded the missing persons report Michael had just signed.
Sam’s car parked in the barn formerly known as a garage
It took awhile for the emotions to settle and the conversation to begin. Sam knew he had separated from Michael and had been going the wrong way down the highway. But he remembered the directions Michael gave and when he was sure things weren’t looking right, he turned around and went the other way. He stopped at a medical center to get directions, too, and then he headed home.
(So, Tim Ruggiero, not only pizza places, but also medical centers are good places to get directions, we learned today.)
We gave ourselves a list of things to do, like Michael joining AAA, and Sam putting GPS in his car with a “home” button, and me putting a hide-a-key on the truck, so that all our good deeds trying to help each other out don’t get so punishing.
And, a big shout-out to all of the mid-cities’ finest. You got to know autism today and you did well.
Overheard in the Wolfe House #262
Sam: Mom, I’m very relieved to be home.
Peggy: I’m relieved to have you home.
[No hug; END scene]
To work
When Sam graduated high school and got his first job sacking groceries for customers at Albertsons, a dear friend and knowledgeable researcher told me that he would grow up a lot from the experience. He was right. The things you need to grow and be successful on the job, even just organizing your life in a reliable way, are quite demanding.
Sam grew up a lot that first year, thanks to the world of work.
He’s on the cusp of another job search, one that we hope will stick a little better than we’ve been able to do on our own since he graduated from North Central Texas College in December 2012 with his associate’s degree. He’s qualified for the same kind of help that helped him land that first job.
I cannot underscore how important these programs are. Researchers at Vanderbilt and the University of Wisconsin-Madison agree that underemployment is a common among adults with autism like Sam and programs are needed to address the problem. How big? About half of adults with autism — a growing population — spend their days in segregated settings of work, or other activities, with contact with the rest of the community.
Which isn’t good for the community, either, by the way.
What else did those researchers find? Here you go:
More independent work environments may lead to reductions in autism symptoms and improve daily living in adults with the disorder, according to a new study released in the Journal of Autism and Developmental Disorders.
Researchers at Vanderbilt University and the University of Wisconsin-Madison examined 153 adults with autism and found that greater vocational independence and engagement led to improvements in core features of autism, other problem behaviors and ability to take care of oneself.
“We found that if you put the person with autism in a more independent vocational placement, this led to measurable improvements in their behaviors and daily living skills overall,” said lead author Julie Lounds Taylor, Ph.D., assistant professor of Pediatrics and Special Education and Vanderbilt Kennedy Center investigator. “One core value in the disability community and at the Vanderbilt Kennedy Center is placing people with disabilities in the most inclusive environments possible. In addition, this study gives us evidence that increasing the level of independence in an employment or vocational setting can lead to improvements in autism symptoms and other associated behaviors.”
Participants averaged 30 years of age and were part of a larger longitudinal study on adolescents and adults with autism. Data were collected at two time points separated by 5.5 years.
Taylor, in collaboration with colleagues at the University of Wisconsin-Madison, looked at such autism symptoms as restricted interests, repetitive behaviors, communication impairments and difficulties with social interactions and found the degree of independence in vocational activities was uniquely related to subsequent changes in autism symptoms, other problem behaviors and activities of daily living.
The results provide preliminary evidence that employment may be therapeutic in the development of adults with autism. Similar to typically developing adults, vocational activities may serve as a mechanism for providing cognitive and social stimulations and enhance well-being and quality of life.