problem-solving
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.
The Peter Principle
Oh, the holidays are coming. Mostly, they stress me out, but I like the making of the presents and the baking of the things. Recipes I don’t dare make any other time of year because I’d blow up like Violet in Charlie and the Chocolate Factory if I did.
Things such as fruitcake — the kind people love because you douse it with rum once a week — has to be started this month.
When the kids were little, we would make a gingerbread house that they could take to Cornerstone Cooperative Preschool for the Christmas party and break it apart and eat it.
I took a class from Sacramento County parks and recreation that was just Christmas cookie recipes. Got lots of good ones there — little sesame thins, which are about as addictive as sables, and one of those early versions of death-by-chocolate cookies that were more brownie or candy than cookie.
We always make cinnamon rolls for Christmas morning.
Those little guys were really tender the years Mark was able to score two 50 pound bags of Peter Pan flour. The bags were damaged in a delivery he was making. The flour was fine.
Oh, I loved that flour. We became baking fiends. Scones, biscuits, artisan-style breads, homemade pizza. As the bags emptied, I begged Mark to ask them next time he was trucking for Morrison (he drove a regional run for JB Hunt) to ask them where to get it. They said those big bags only went to restaurants and bakers. They couldn’t sell him any.
I know I should be able to find the little bags of Peter Pan in the stores, but I never see them. I buy King Arthur, which is good, too, and Albertsons “O” Organic.
Sigh.
I’ll go on the hunt again, but it’s going to be another Christmas without Peter Pan.
Good thing Sam’s favorite cookie doesn’t need flour. This one came from the Sacramento class. It’s called Unbelievable Cookies
1 c. crunchy peanut butter
1 c. sugar
1 egg
1 c. chocolate chips.
Mix peanut butter, sugar and egg in a bowl. Stir in chips. Shape in balls and bake at 325 for 10 minutes. Do not over bake.
Happy Halloween
My good friends at Texas Parent-to-Parent sent out their fall newsletter with some tips to help kids with disabilities, and particularly those with autism, Aspergers and sensory dysfunction to make the most of Halloween.
I asked Sam tonight if he remembers when it got easier for him to wear Halloween costumes. He stopped eating his Blue Bell Christmas Cookie ice cream long enough to say “high school.”
So, long past the trick-or-treating days.
Here’s a tip sheet for costumes and activities.
And here’s a tip sheet for the rest of us to help make Halloween special for all the kids.
Remember what Lucy Van Pelt said: Never jump into a pile of leaves with a wet sucker.
Cleanliness is Next To Impossible
The problem with putting your house on the market is that people come over. And before they do, you have to clean it.
A lot.
And not that Erma Bombeck way, where you just give it a sweeping glance.
Opening our lives this way has been traumatic for Sam, but he’s getting better. I got just a little ptsd leftover from when we sold our home in California in 1993. At the time, I was pregnant and chasing two preschoolers. We lived in a 1,100-square-foot house with a forest of tubas in a “hot zip.” Real estate agents were supposed to call and schedule a visit, but they would sometimes pull up to the curb and “call.”
After a while, I gave up. They could just tour a messy house — dirty diapers, toys, dishes, tubas, and all.
Here, we live too far off the beaten path for people to take a chance on pulling up and getting permission to see the house. But I am tired of always being “on” with the cleaning. This market is a lot tougher. I’ve got the place priced competitively, so we have too many people coming through. Some rooms in the house have taken on a museum-like quality.
My mother has that kind of tidiness in her house. My sisters do, too, at least in certain rooms.
I’ve not ever been that way. It’s not like I don’t know that I should clean the refrigerator once a month to discourage listeria, but it’s amazing how long I can go when I think no one is looking.
I vowed to get better the day that Michael and Paige came running into the office — I was writing something — to announce that a spider nest hatched because there were a thousand baby spiders on the living room ceiling.
They thought it was really cool, but decided that leaving it to nature wasn’t a good idea. And there really were a thousand baby spiders on the ceiling. I vacuumed for about an hour.
After that, we worked out something called Hour of Power. We put about two dozen small cleaning jobs on slips of paper in a bowl, the kids would roll the dice and take turns picking jobs on a Saturday or Sunday morning. Mark and I would do the tough stuff, like mop the floors or address whatever disaster had been waiting all week (the refrigerator, for example.) By the time we were done, it looked good and lasted almost til the next Hour of Power.
Those were the good ole days.
Well, back to cleaning.
Things I Never Knew I Was Waiting For
I’m fond of telling my kids that their grandkids will be in awe of their childhood experiences — all of what a computer couldn’t do, how crude a smartphone was, how brutal medical practices seemed (that last idea comes courtesy of Star Trek IV The Voyage Home).
I tried to apply that perspective to all kinds of situations in raising Sam. Being aware that you are in pioneering territory is helpful. Lots of people have come before us to do the Lewis and Clark equivalent of defining the landscape of accommodating someone with a disability and laying the groundwork with the public policy that opened up this new frontier of living with a disability.
I try to remember this journey as the Wolfe family Conestoga wagon settling the autism frontier. Nearly every day something new, something without precedent. Sometimes it’s exhilarating. Sometimes the risks are clear and present. And always, always, exhausting.
The pioneering days of speech therapy are behind us. If someone in the discipline was interested in a exit interview, I have things to say about what worked and what didn’t. I would imagine Sam does, too.
Never was that more clear than when I read the following line in Diane Ackerman’s book, One Hundred Names for Love (a book about her husband’s stroke and continuing recovery from aphasia, which has some interesting similarities to Sam’s speech impairment). She describes a scene where her husband, Paul West, also an imaginative writer, struggles with fill-in-the-blank worksheets meant to help him regain his ability to talk.
“Choosing the correct answer could be as tough as herding cats. But, like most people, I did know the accepted answer. Selecting it, I had to ignore all other answers that spring to mind or were truer to my experience.”
Correct is not the same as accepted.
Furthermore, we cannot ascribe too much meaning when a client cannot come up with the accepted answer.
I tried to explain that in my book, when I relayed Sam’s experience of confronting vocabulary cards with images of things he’d never seen before. Diane absolutely knocked it out of the park, explaining the inherent social context of many speech exercises.
I think it could be a much bigger problem than those working in speech therapy might realize.
Throughout the book she describes “deliciously ambiguious words” and takes us on verbal joy rides with them. She sprinkles phrases without context and then gives us a fun house worth of perspectives to show how much we depend on context for meaning.
I wish I knew that two decades ago. I can only imagine how much better his speech therapy would have been. I wish I knew that a month ago when we were hit again with this problem.
I wish I knew these things I never knew I was waiting for.