Catching

Sam has a certain smile that really sings.

He’s such a deep thinker that we don’t get to see this smile very much. Like the smile-for-the-camera smile most of us have, his face looks posed in photographs, only more so. But when a happy moment comes — like that moment when sunlight makes it through the clouds and trees all the way down to the ground to light a patch of wildflowers — Sam’s smile just sparkles.

He lit up that way yesterday when I showed him the rain barrel I brought home from a workshop. “We’re bringing the farm,” he said.

Well, almost. This is the barrel.

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This was the farm’s.

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We are growing vegetables in beds on the other side of the fence. That 50-gallon barrel should go a long way toward keeping things watered.

I’ll be writing about the rainwater catchment class and the barrel for Monday’s paper.

We have settled into the new place here in town pretty well. We enjoy the many and varied offerings that come with city life. We’ve all got bicycles and ride them around town more and more. But it’s not the same as life on the farm.

We made a very intentional choice to look around at what was missing and bring it in. The rain barrels, and living life closer to the rhythm of the seasons is part of that.

When you see blue-eyed grass covering our front lawn in the spring, you’ll know we finally got it as close as we could.

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See Sam Drive: Tractor Edition

Sam and I re-homed the tractor today, one of many steps away from the farm and toward life in town.

He drove the tractor as I followed him in the pickup, loaded up with nearly all the tractor accoutrements Mark had acquired over the years, down Frenchtown Road for the last time.

Mark taught Sam to drive the tractor when he was a teen. He wanted Sam to learn to drive a car and figured this was a good way to see how he’d manage. Better to mow down a few trees or knick a fence or  two in the relative safety of your Texas-sized front yard in that journey of self-discovery.

Sam, Master of the Tractor/Photo by Mark Wolfe

Sam, Master of the Tractor/Photo by Mark Wolfe

Mark was right. Sam could do it. When he pulled the tractor up under the carport this afternoon and parked it perfectly, Susan exclaimed, “Wow, Sam, you’re a professional!”

Sam wasn’t going to tolerate any tears from me, so I blinked them back behind my sunglasses.

“I made it!” he beamed.

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.

UntitledI’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.

Fifty shades of attention

Sometimes the best conversations you have with your kids are in the car on the way somewhere, or while you’re working on something together. I don’t understand why it worked, but we’d get revelations from Michael as we did fence repairs for the goats, for example, or from Paige after we’d get going on sewing project together.

Only in the past few weeks did I come to realize that wasn’t really the case for Sam.

Of course, when he was little, and we discovered that giving him our full attention managed to coax more language and social development out of him, we gave it our all. Mark even took a square tabletop off its pedestal leg and put foot-high 2x2s under all four corners for a play table. We spent hours sitting at that play table with him. Sometimes, it became just like a family dinner table in Japan. We cleared off the toys and sandpaper letter cards and other learning materials and ate our meal there (usually in front of a baseball game, we weren’t saints.)

As Sam grew and his language and schooling caught up, there was much less direct time like that together. We chatted at the dinner table, in the car, just like we did with his brother and sister.

In recent years, though, we noticed that Sam often had false starts to his sentences. Paige mentioned her concerns that she might have to wait for him to start and re-start a sentence as much as four or five times until he could finish it.

I wondered if I needed to find a speech therapist to help him. Sam and I talked about it briefly, and he was amenable. He had speech therapy throughout elementary, middle and high school. We didn’t seek it after that. But I told myself, add it to the list, but not at the top. We’ve got bigger fish to fry (and that’s not a metaphor: we’ve been working on cooking and kitchen management this year.)

While reading a new book on mindfulness, Thich Nhat Hanh’s Peace is Every Step, I had a quiet revelation. (Reading it as part of my work with Shahla Ala’i-Rosales and our new book on mindful parenting for those who have children with autism) What if I gave Sam my full attention when he started a sentence with me? Would that diminish the false starts?

That meant if he started talking to me while I was filling the dishwasher, for example, I was going to have to stop in the middle of my work, not just keep talking and working at the same time. I’ve been in single mom mode for nearly six years now. I recognized this would be training for me, not for him.

I got plenty of reinforcement for the change right away. The false starts diminished almost immediately. I told Michael about it and he was excited for us. He may even take data on my attention and Sam’s sentence starts next time he’s home, if it isn’t completely gone by then.

Shahla told me it makes sense. Many of us have learned that we can carry on a conversation with another person while they are doing something else. But Sam and others with autism may be less sure of the social cues. They may question whether they are communicating. They may think they are making a mistake, Shahla says.

Oh, no. That mistake was mine.

 

Two things

Two amazing things happened with Sam this week. I’m sure that, to Sam, they are not amazing, they are just living and being. But for me, who knows how far he’s come, and for other parents and caregivers out there who know what minor miracles look like for a person with autism here ya go …

First, I helped Sam navigate another application for work at the Target Distribution Center in Denton. He filled it out himself, but he hit a wall when they asked for his GPA, and he realized that, as a graduate, he couldn’t access that information as readily as before. I helped him brainstorm other places he could find that information and he found it on a copy of a degree audit he’d kept. Sometimes the questions in the online application weren’t clear and I translated for him. When he was done, he told me that since I’d helped him, he needed to return the favor. He put custom ringtones on my phone, which now sounds like birds and frogs, and confuse the cat, which is fun on so many levels.

Reciprocity.

Then, Sam was out with friends having dinner at Chili’s Wednesday when he saw a game on the Ziosk on the table that he recognized as one built by the clients at nonPareil Institute, where he interned. He took a photo of the game while he was there at the table, posted it on Facebook and tagged one of the institute’s directors.

Higher-order thinking (and in a social context).

Two big, gold stars this week.

 

Purple joy

I’m so excited for Michael. He graduates Saturday from Texas Christian University.
I saw him briefly today and warned him I was going to say something totally parental and over-the-top. “It just seems like yesterday I picked you up from the campus visit and you were eating that purple popcorn.”
We laughed.
With each graduation, I’m more excited than the one before, especially the kids’ college graduations. I was so “meh” with my own. In fact, for both music degrees I opted out of the walk and got paid to play in the ceremony.
I suppose if you play through Pomp and Circumstance continuously for a 15-minute procession it would make you “meh” about the ceremony, too.
I was excited for my masters in journalism degree, though, and made a point of going through the ceremony. Mark was out of town, but the kids wanted to come. That was 2002, so Sam would have been 14, Michael 11 and Paige, 8. We got to the UNT Coliseum a little early, and I figured out about where I would sit on the floor and then put the kids in the nearest row next to me. That way Sam could wiggle in the aisle all he needed to. They were maybe 30 feet away, and Sam wasn’t the only one who could barely stay in his seat. It was so funny to watch them.
We went to a late lunch at a nice place with tablecloths afterward and they all ordered hamburgers.
I made reservations for Classic Cafe after Michael’s ceremony.
I wonder if they’ll order hamburgers.

Always a reporter, never a source (except maybe once)

For about six months in 1997, this tapestry lay over the table in the breakfast room at our house as we worked with two other couples and a high school student to turn it from bits of amazing fabric to the beautiful design you see here.

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It is one of the five large tapestries that hangs during the Easter season at our church, St. Philip the Apostle Catholic Church in Lewisville. Three are conceived as panels in the main display, two more flank the sanctuary, and a sixth, smaller tapestry drapes over the altar.

For Easter season alone, we had to have enough volunteers to make the six tapestries. Multiply that by the many seasons of the church calendar — the bold red tapestries for Ascension and Pentecost (Sam’s favorites) hang for just two weeks — and you get the sense of what a barn-raising that was.

Mark announced in 1996 that he wanted to convert, something apparently he had been quietly thinking about for years. In the early 1990s, we’d found a good church home in Sacramento, at St. Francis, during, of all things, the time when they were retrofitting the sanctuary for earthquakes and Mass was being held in the school gym. Mark said he hadn’t known such a spiritual home when he was growing up, which always made me a little sad. I know there were times as a child I didn’t get what church was about, but there were times that I did.

The first year after Mark died, I came to help switch out the tapestries between Lent and Easter. There was a team of volunteers who did it regularly and they welcomed me. Once they knew I was part of the team that stitched it together, I got peppered with questions, as if they were historians that had just stumbled upon the best primary source ever.

They had a burning question. Was is true, that one of the Easter tapestries had a bit of a parishioner’s wedding dress on it?

Yes, I said, pointing to the tapestry that we had made.

Now, don’t get excited, dear Internet people, it wasn’t a piece of my wedding dress. Mark and I were such hipsters back in the day, I made our get-married-barefoot-on-the-beach-in-Kona clothes of a buttery linen. This tapestry is filled with bridal fabrics, but full of shiny silks and satins and sparkly lames and organzas.

Two Dominican nuns designed the work and set up all the volunteers with the patterns and fabrics needed. They included a little extra for errors.

Our team didn’t quite cut all the fabric at once, which we maybe should have, but we were also worried about losing track of some pieces. By the time we came to the very last piece, there wasn’t quite enough of the creamy white, rich brocade the sisters intended. We nearly panicked. No matter which way we turned the piece of remaining fabric and pattern, we couldn’t make it work.

Marcy, one of the volunteers, studied it closely. “It looks like my wedding dress. I bet I have enough fabric left,” she said. We were stunned when she brought the piece the next week. It was almost a dead ringer for what the sisters had given us to use.

We decided to sew it on and tell the sisters later. They thought it was a great solution, but the story still turned into church folklore. As my friend, Donna Fielder says, now that I am too old to die young, I see that’s what people do with certain stories.

Each Easter season, I get a little misty when I see this tapestry, knowing that Mark’s signature is on the back with mine and that of our friends and knowing the year the tapestry was started was the year he was welcomed into the church.

 

 

Ten things we didn’t know about autism one year ago …

Autism Speaks ran a super cool top ten list this week.

I’ve re-arranged their list by topic. I think it’s more useful that way, but you can refer back to their order, too. (ASD means Autism Spectrum Disorder. Let’s all get used to the change of language again.)

Prevention

Prenatal folic acid, taken in the weeks before and after a woman becomes pregnant, may reduce the risk of autism. Here’s the story.

Early intervention

High-quality early intervention for autism can do more than improve behaviors, it can improve brain function. Read more.

Being nonverbal at age 4 does NOT mean children with autism will never speak. Research shows that most will, in fact, learn to use words, and nearly half will learn to speak fluently. Read more.

Though autism tends to be life long, some children with ASD make so much progress that they no longer meet the diagnostic criteria for autism. High quality early-intervention may be key. Read more.

Researchers can detect presymptom markers of autism as early as 6 months – a discovery that may lead to earlier intervention to improve outcomes. Read more.

The first medicines for treating autism’s core symptoms are showing promise in early clinical trials. Read more.

Many younger siblings of children with ASD have developmental delays and symptoms that fall short of an autism diagnosis, but still warrant early intervention.Read more.

Social skills

Research confirms what parents have been saying about wandering and bolting by children with autism: It’s common, it’s scary, and it doesn’t result from careless parenting. Read more.

One of the best ways to promote social skills in grade-schoolers with autism is to teach their classmates how to befriend a person with developmental disabilities. Read more.

Other signs of hope

Investors and product developers will enthusiastically respond to a call to develop products and services to address the unmet needs of the autism community. Read more.