problem-solving
Overheard in the Wolfe House #214
After the Mayan apocalypse fail …
Sam: So I had a nightmare last night. Did you?
Peggy: No. I know you were worried about that. But see … ?
Sam: Yeah. The sun came up (pauses). The thing about nightmares is you know you are having a nightmare when you are having one.
Overheard in the Wolfe House #212
Sam: I thought I couldn’t remember how to do this.
Christmas magic man.
(pauses) I guess I still got it.
The Telephone Book Lullaby
Sam had a hard time falling asleep when he was a toddler. Some nights we had to lay in the bed with him. It got so tiresome that when he finally nodded off, we’d just go to bed, too.
We had a few tapes of lullabies we’d play for the boys when they were little, and it helped on nights that Sam was less fitful and didn’t need a human teddy bear to fall asleep.
One of the tapes was of Jan DeGaetani singing Alec Wilder’s Night Songs and Lullabies. If I remember correctly, Ray Wright arranged them. We wore out a copy I made of a recording borrowed from the Rochester Public Library. If there is such a thing as local produce, there is of music, too. She was a great singer that taught at the Eastman School of Music, and Wright headed up the jazz department. Wilder had his own connections to the school. I knew that bootleg copy was a keeper and I was bummed the day it wouldn’t play anymore.
From time to time, I would call the people at Recycled Books and ask them if they had a recording of Jan DeGaetani singing Alec Wilder’s Night Songs and Lullabies. Never worked out. Earlier this year, I got on a tear again. Another artist recorded it, and I bought the CD. Reading the liner notes, I’m not sure they were even aware of the other recording. It’s lovely, but it’s not Rochester-local. I don’t know how to explain that.
Editions of that music book that I’ve seen for sale are collector’s items. Published in 1965, it was a music manuscript collection meant for children — it’s illustrated by Maurice Sendak (yes, the author of Where the Wild Things Are). I’ll bet in some families it’s an heirloom. This month, I borrowed it through interlibrary loan and started playing the lullabies and night songs on the piano.
Oh, the flood of memories. I swear music hits way more memory spots in your brain than smells and scents.
I asked Sam if he remembered any of them, and he didn’t. In a way, for him, that’s a good sign. When he was little, his memory was lists and lists, like a telephone book. He mapped out everything and it was always available — addresses, people’s birthdays, etc. But as he got older, his memory got less savant, you might say, and that’s ok.
Wilder’s book has about 50 little tunes in it, many of them completely original. As I played through them, I realized not all of them were on the original recording. One of the lullabies, if it had been, would have been Sam’s favorite as a kid — then he may have remembered it as an adult.
When I played it for him a few days ago, he followed along with the lyrics and laughed. This was a good lullaby for kids, he said.
I think all parents of kids (and not just parents of kids with autism), desperate enough for them to fall asleep that they might just start singing the phone book, would agree.
The Telephone Book Lullaby, by Alec Wilder
Ada Jones, Agnes Jones, Albert Jones, Alec Jones,
Alfred Jones, Alice Jones
Alma Jones, Alvin Jones, Andrew Jones, Anna Jones and
All the other Joneses.
For additional verses, Mr. Wilder suggests you see “Jones” in any telephone directory.
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.
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.
OMG
I wanted to pass on a particular invitation this weekend. It wasn’t the company. I’m smitten with the great people at nonPareil Institute, where Sam interned in spring 2011. They are having their second fundraiser this weekend, a Sunday night banquet and a golf tournament on Monday. No golf for this working girl, of course, but even the banquet price was a little rich for me.
I reminded Sam we were already heading to another fundraiser earlier in the day — a fajita fiesta for Denton County’s newest therapeutic riding center, Born2Be.
But he wouldn’t hear of it.
“Why didn’t you ask me to buy the tickets, Mom? It’s nonPareil. I should be the host.”
After he finished the order, it hit me.
I’m a trophy mom.
The move
Since we’ve been trying to move the actual family room for more than a year, I consider this move of the virtual family room a big step in the right direction.
This is my first post here, after shuttering the space at Blogspot. Like any change, I’m a little sad to walk away from the old space and its comforts and familiarity. But I’m excited, too. I’m grateful to SUMY Designs (see their link for author websites) and my good friend and running buddy, RunnerSusan, for the new, clean look and navigation. This is my third round of website design since “See Sam Run” came out in 2008. I’m still grateful for my Denton Record-Chronicle co-workers, Karina Ramirez and Randena Hulstrand (now at UNT), for helping me think through what was needed on the first website. It was a great foundation, and each version we publish on the web gets a little better.
We’ve moved everything over, including the autism resources from “See Sam Run.” I will get my news clips uploaded very soon, something I wouldn’t have given any thought to five years ago, but is all-but-required of writer websites now. The annotated list of shale stories is still here, a service to those who have wandered into the Family Room over the years, and still do from time to time, looking for that help.
I’m the most excited about the room to grow. Shahla and I continue to chip away at our new book for parents of the bravest hearts. At least once a week we meet and talk and write together for a few hours. Lately, that’s been at Jupiter House, which makes me want to digress about the concept of the third place and how coffee shops replaced the neighborhood pub, but I won’t. Any more. Shahla Alai-Rosales, by the way, is a brilliant behavior analysis professor (winner of this year’s ‘Fessor Graham award) teaching at the University of North Texas and keeping her clinic chops sharp working with Easter Seals North Texas.
It’s a much slower pace of development than I’m accustomed to at the newspaper, but it’s still faster than the seven years it took me to write “See Sam Run” or the past five years I’ve been noodling with another memoir (the seeds of which are in Carrion.)
At first, Shahla and I had seven guideposts for parents. We’ve got that down to five. We plan a short book, and it is filling up with little fables that reflect the emotional landscape we parents work in. Shahla and I are assembling other bits of information in ways that should make the guideposts easy to understand and remember. We never forget how hard it is to be a parent and how pressed you can be for time to “sharpen the saw,” as the late Stephen Covey said in 7 Habits of Highly Effective People, and how high-stakes it feels when you are the parent of a child with a disability. Research has shown that some parents, when making a decision on behalf of their child of a disability, feel the same weight of that decision as world leaders do for their countrymen.
Welcome to the new Family Room. Hope to see you again soon.
Where running meets writing
It used to be that I ran with RunnerSusan.
It was easy. We were neighbors. Not in the Yankee way, (which we both are, by the way), living next door or across the street from each other, but in the Texas way, where we could be like the two trains in a story problem with 4th grade math. If two runners leave the house at the same time, and one heads west on Frenchtown Road and the other heads east, where and what time will they meet?
And then we’d keep running for an hour.
She moved to a new place, with a peach tree and a patio. It would take more than an hour to meet, so now I race alone.
It’s ok.
One day soon, we’ll figure out how to start the way we started last summer, trail running. Trail running is the best, anyways. If we get going good enough, we might race together this fall, through trails in the woods in East Texas, or up around Lake Ray Roberts.
I’d love to run the Palo Duro Canyon race in October, but a professional conference sneaked onto the calendar that weekend.
Maybe next year.
By the way, fellow Mayborn School of Journalism pals Valerie Gordon Garcia and Sarah Perry joined team-in-training.
We care about blood cancers in the Wolfe house.
A good friend is living with it.
And so is my dad.
Happy Father’s Day, Dad!
Resource Fair tomorrow
I went to this fair last year. It’s huge. If it exists, you will find it here.
SEPTSA’s 5th Annual Special Needs Resource Fair
Saturday March 3rd, 2012 – 10 am to 2 pm
Where: Bolin Administrative Center, 1565 West Main Street, Lewisville, 75067
Map here
NEW THIS YEAR !!
WE WILL BE DRAWING FOR RAFFLE PRIZES EVERY HOUR
INCLUDING AN IPAD !!!!
Thank you to our Media Sponsor,
…for helping us spread the word and reach more families!
Exhibitor Reservation Information and Registration here
Download a flyer to print or share here!
If you have questions, contact Jeannette Robichaux at (972) 310-2922
Families from LISD as well as surrounding communities are invited to attend. There will be exhibitors relating to all ages and abilities, and everyone is welcome. We are inviting various recreation providers, therapists, summer camps, lawyers, financial planners, and professionals that serve the Special Needs community to come share their information with students and families, as well as educators.
Overheard in the Wolfe House #164
Sam: I’ll call the dentist tomorrow and schedule an appointment for Thursday.