What color is your agitator?
When Sam was in elementary school, he often asked people what color their washing machine’s agitator was. You would be shocked — shocked, I tell you — how many people did not know the answer to this question.
Many times people were so loving and accommodating. If we were visiting, they would say, “Let’s go look,” and the whole crowd headed to the laundry room. Sam enjoyed that. If they didn’t know, and didn’t suggest to go look, he didn’t obsess over getting the answer. He had picked up enough social graces that he would simply move on. Often, at that point in the conversation, he would share the color of our washing machine’s agitator. For some reason, I was slightly embarrassed the first few times he shared that — even though I told myself that was not the same as sharing other details about the family laundry.
I was never quite sure of his motivations for gathering that information. I don’t remember when he stopped asking for it. I asked him about it a few nights ago and he remembered that it was something he was curious about. “I don’t remember when I lost interest,” he said. He doesn’t remember why, either.
Sam has been researching home automation systems lately. He thinks about accessibility. A person in a wheelchair can’t reach the controls, he says, and an automated system would let them operate appliances by remote control.
He’s so determined, even if it means teaching himself code, which he finds exacting — even for him.
He had been quiet about it for awhile, but I asked him about it again after this video showed up on the browser history when I came home from work.
(Other parents might have to worry about stumbling upon porn. I just get to see a washer with three speeds of spinning.)
I don’t mind him experimenting on our house. And I wonder about how to show off that quality to an employer. He’s a problem-solver.
The current color of my agitator, you ask?
White.
Overheard in the Wolfe House #206
Sam (making pizza): When you’re a half-cup short on flour, you don’t have enough flour.
Overheard in the Wolfe House #205
Sam (holding a chunky bit): So what’s in this new jelly you made?
Peggy: That’s a cinnamon stick. It’s that Texas port wine jelly recipe I was telling you about. The recipe called for packing the sticks in with the jelly.
Sam: Well, I ate one already.
Overheard in the Wolfe House #204
Sam: Mom! Come look at the moon!
Peggy (seeing the moon rise through the tree tops): Oh, that’s something special.
Sam: Yeah. You need a full moon on Halloween. That’s what makes it spooky.
Random thoughts on hitting the 1,000-mile mark
In the first mile of today’s 4.5-mile run, I rolled over 1,000 miles on my jogging log. I used to run 1.5 miles and called it good. That’s just a warm-up now.You can rack up more miles, faster, if you register for race(s). (Race to train, as RunnerSusan says.) Some of the miles have been logged on trails deep in the Cross Timbers forest. Friends warn me of a mountain lion and her cub roaming on a favorite route down the road. What I still fear most is a distracted parent in an SUV. I don’t run with earbuds and music — on solo runs, there is birdsong, and on buddy runs, conversation. Logging miles on your personal odometer is curiously different than your vehicle’s odometer. Too bad changing the tires doesn’t have the same effect on the truck as lacing up new running shoes.
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.
Wanderings and chasings
If you’ve ever chased a 2-year-old, you know the drill. Your toddler runs ahead of you, stops for a moment to look back and see how well you are catching up before she’s off to the races again. You are exasperated, but you have a longer stride. You’ll catch up eventually.
If your toddler has autism, you won’t get that look back. I devoted an entire chapter of See Sam Run to the chase and detailed the two other terrifying instances when Sam decided to go for walks on his own.
We were lucky there were only the two. When I hear stories in the news of a child wandering, that’s the first thing that comes to my mind — parents struggling with a child with autism. I always wonder if law enforcement and child protective services have it “top of mind,” too.
Some of our kids keep on wandering.
Sam started “wandering” again when he was 14. He would take his bike out for long rides. But, in this case, it really was quite a normal thing to do, a boy stretching his boundaries, learning how big the world really was, exploring.
One day, he noticed window damage to a home being built down the street and got off his bike to investigate. Unfortunately, he did that in front of a police officer, and when he was approached, he got scared. He hopped on his bike and raced home, the officer following him.
We were lucky that day that we happened to come home just a few minutes after Sam was chased home. He was pacing in the garage, talking to himself, as the officer was trying to talk to him.
It took some time to remove the cloud of suspicion that was over Sam’s head — because, of course, every parent says, “there’s just no way my child would do such a thing,” just before they learn that was exactly what their child did.
Sam didn’t do it. But he never rode bike anymore after that, which Mark and I considered a real tragedy. We coaxed and cajoled, to no avail.
Fourteen years of riding bike, whether in a trailer behind his parents, or around the patio with a trike, or down the sidewalk with training wheels.
Done.
He hasn’t pedaled since.
Sunday breakfast
I have fond, though foggy, memories of my mom making a German pancake, or Pfannkuchen, out of The Joy of Cooking, when I was a little girl. Because it used soufflé techniques (separating the eggs and beating the whites) she didn’t make it very often. When she did make it, I think we actually had it as breakfast for dinner.
Yet, as much as I liked it, the German pancake wasn’t part of our family’s cooking rotation for a long time. A souffle was a souffle, and pancakes were pancakes. Then, while living in California, I picked up a cookbook, Trader Joe’s Favorite Sunset Recipes, with a page devoted to Dutch baby pancakes. They used a blender instead of fussing with the eggs, and we were off to the races. About ten years ago, Gourmet came out with a cookbook that has a puffed apple pancake, and that recipe became one of Sam’s favorites.
Being a fan of whole grain cooking and baking, I held out hope when Eating Well finally tried to adapt it. I knew that would be tricky — getting a soufflé-like lift with heavy whole grains. Their adaptation was ok. But it’s a Sunday breakfast, so I usually stick to the white flour recipes, and cut down on the sugar. We made it again this weekend, although, like when I was a girl, it was breakfast for dinner
Apple Dutch Baby
2 apples, cored, peeled, and sliced
1 T. lemon juice
2 T. brown sugar (3 T. if using tart apples)
1 tsp. cinnamon
1/4 tsp. ground cloves
2 T. butter, divided in half
3 eggs
3/4 cup flour
3/4 cup milk
Preheat oven to 425 F. Put a 9-inch cast iron skillet in oven to preheat with 1 T. of the butter. Toss the apple slices with lemon juice, sugar and spices. Meanwhile, in another skillet melt the remaining butter and saute the apples for 3-4 minutes, until they begin to soften. Put the eggs in the blender and whirl at high speed for 1 minute. Drizzle in the milk with the motor running, then the flour. Remove the skillet from the over, pour in the batter, ladle the apples and their juices over the top. Bake for 15-20 minutes. It will rise beautifully and become golden brown. Serve immediately with a squeeze of lemon juice and sprinkle of powdered sugar (my preference) or with maple syrup (Sam’s).
Overheard in the Wolfe House #203
Sam (echoing Mark, who often asked this question of the kids on the way home from church): So what did you learn today?
Peggy: Not much. The homily was too challenging. I tried and tried, but I couldn’t figure out what he was saying.
Sam: Me, neither.
Overheard in the Wolfe House #202
Peggy: Oh, no. The clerk put the onions on top of the bananas. I’ll bet they are bruised. I thought they told you about that at the store.
Sam: I’m very careful with produce, Mom. But sometimes they get frustrated with me because they want me to go faster.
Peggy: The customers? Or the managers?
Sam: It’s hard to pack fast and be careful with the produce. (pauses) Sometimes it’s very difficult to be a grocery sacker.