decision-making
Overheard in the Wolfe House #217
Peggy (to Paige): So, you think you might want to make that key lime pie today?
Sam (in a stage whisper, from another room): Oh, please Paige, say yes.
Overheard in the Wolfe House #209
Sam (after nearly 20 years with Riding Unlimited): As I was leaving, I took one last look around at the place.
Peggy: Were you sad?
Sam: Not really. I’ll still see Pat at Chisholm Challenge and Special O. I get to see Tracy and Anita and Mary again. (pauses) I couldn’t give that up.
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.
What little girls are made of (reprise)
The adorable photo of the girl in the jumper comes from the Women and Girls Lead Facebook page and has been pinned around cyberspace. I saw it on the page of a comrade in single motherhood. It made me think back when Paige was in kindergarten and first grade and she went after school to the community dance program at Texas Woman’s University. For a while, she learned ballet, then she tried another dance class that mixed up the styles a little more.
You could see, even then, that she was a talented dancer, but she tired of it. I didn’t make a fuss.
If she thought of dance during the rest of elementary or middle school, I didn’t know it. For all I knew then, dance had only been an early childhood interest. But when the high school marching band added a color guard, she was all in, not just with the flags, but the dancing, too. Such a personality she had during performances!
Sam’s younger years were a gift to his siblings in some ways. We were trying so hard to get Sam to “average,” we didn’t fall into those traps that so many anxious parents fall into with their kids and their extra-curriculars. Michael and Paige tried out lots of different things: music, sports, leadership, theatre, and 4-H.
And that was a beautiful thing. Paige worked hard with her dancing in high school. Yet, because it was never a chore, never something she did to please anyone but herself, dance will be a lifelong love.
It’s a good thing to remember when you’re sinking $200 into gear or lessons. I never let myself think it was an investment in a future, four-year scholarship. It wasn’t something to distinguish my child from their peers. It was something to allow them to stretch and explore and learn and feel and discover who they really are.
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.
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.
Setback in Santa’s Workshop
I have a bad habit of using old appliances until they catch fire or shock me into unconsciousness.
I’ve been so determined to keep my mid-century Pfaff sewing machine going that I’ve nearly set the house on fire twice. The first time, I warned the shopkeeper that I was bringing it in for service because it had nearly caught fire and to please be careful.
When I came to pick it up, he said, “Dang, we nearly set the shop on fire.”
Today was the last straw. Tomorrow, I buy a new machine. There is too much to do for Christmas, and I can tell I’m just asking for trouble.
After all the sparks flew this time, Sam came into the office/sewing room/Santa’s workshop and said, “What’s that burning smell?”
The Case Against Long ARDs/IEPs
A Sunday piece in the New York Times (Tierney, John, “Do You Suffer From Decision Fatigue?” Aug. 17, 2011) explained something we figured out instinctively in the Wolfe house a long time ago — don’t make important decisions when you’re tired.
Tierney explains the nuance to it, and its whys and hows. The ability to make good decisions fluctuates; it’s not an inherent trait or a cultivated talent.
(And, as I hoped in taking my GRE in college, a bar of chocolate really does help.)
Tierney, a respected science writer, reports:
… studies show that people with the best self-control are the ones who structure their lives so as to conserve willpower. They don’t schedule endless back-to- back meetings. They avoid temptations like all-you-can-eat buffets, and they establish habits that eliminate the mental effort of making choices. Instead of deciding every morning whether or not to force themselves to exercise, they set up regular appointments to work out with a friend. Instead of counting on willpower to remain robust all day, they conserve it so that it’s available for emergencies and important decisions.
Which leads me to marathon ARD meetings, those all-day deals to decide what educational goals — and resources — will be devoted to your child for an entire year.
That whole go-around-the-table report thing? That can wear you down like a bride and groom trying to decide what to register for.
And plodding through each individual goal? You may just take the recommendation, rather than contribute to meaningfully to the weighing of different values.
As if special needs parents aren’t worn down to begin with. Yet, parents aren’t part of ARD meeting preparations. They need to review test results and be able to check for their own understanding of the findings. They need to understand the goals and objectives of the speech therapist, the teacher, the occupational therapist, the counselor. More than ever, I’m convinced that the document dump and stilted discussion that occurs at typical ARD meetings guarantees parents will have damaging decision-fatigue, and in the way that Tierney describes it.
We never put a lot of stock in most of the meetings … as long as resource and treatment options were open. We worked on goals for Sam in other ways.
But for parents who have a lot riding on the outcome of the meetings, it’s no wonder that they can turn hostile.
Just like the salesman who wears you down in order to raise his commission, you feel taken. Combine that with the ferociousness any parent has in protecting their child, and you’ve got a meltdown in the making.
Brainstorming 101: Fixing the Garage Door
After Sam finished fixing problems that came with the Lion upgrade, he suggested that we tackle the garage door. We have an automatic door opener that works when it wants to.
And it doesn’t want to very often.
It’s been a great chance to brainstorm solutions. We’ve watched videos on YouTube. We’ve called Uncle Matt. We’ve taken turns trying things and watching the trouble spots to come up with ideas.
And because it’s primarily a mechanical system, it seems that each thing we try brings a small reward, whether it’s knocking down wasp nests to remove a blocked pathway or lubricating parts to lessen the drag on the motor. Each step brings progress.
Sam has decided that we still have some kind of electrical problem, though. He says because we have to hold the button down for it to open there must be some kind of wear in the wires. I told him I’d like to replace the sensors — they look like they’ve just about had the life kicked out of them, they’ve been bumped and bustled so much — and he’s agreed.
And if that doesn’t do the trick, he’s going after the wiring.
Reading Assignment
Before my writing partner, Shahla Alai-Rosales, headed out of town for a few weeks, she left me with a reading assignment. (Once a professor, always a professor, she gave me more than I think I can consume in the time period allotted.)
We are looking for books that could be competition or complementary to the book we are planning to propose to a few specialty publishers — a book about decision-making for parents and caregivers.
For those of us loving and supporting someone with a disability, those decisions can feel pretty high stakes sometimes. Our kids aren’t as resilient if those decisions end up being mistakes. Most of us expect to have some role throughout our child’s life in that decision-making, but it’s easy to get in the habit of doing more than you should.
(Brief digression: Some years ago, my husband wanted me to take over driving while he tended to some other task in the truck. For some reason, he kept barking out directions and reminders to me — something he did not normally do. I drove past the on-ramp to the freeway and he asked me why on earth did I miss that. I told him that for the past several minutes he had bossed me around so much he just took my brain away. I wish I could say we laughed then, but I can’t, and that is the end of this digression, since I hope my point has been made.)
One of the books is by the Turnbulls, et al., from the University of Kansas. Heavy hitters in the world of disability studies and powerful voices when it comes to parenting and advocating. It’s title “Disability and the family: a guide to decisions for adulthood.” (1990: Paul H. Brookes Publishing)
The layout looked like other books I had to consume in grad school (unbearably dense), but it belied it’s content. It’s readable and full of terrific information.
It didn’t take long for me to get hung up on a page that spelled out the steps of a decision-making process. And they are:
Defining the problem or need
Brainstorming
Evaluating and choosing alternatives
Communicating the decision to others
Taking action
Evaluating the outcome of the action
It’s pretty easy for me to imagine Sam being able to define a problem or need in many situations. But there are scores of situations where brainstorming and evaluating alternatives would vex him.
For example, Sam wants to move into an apartment. But we have done some computer searches and I can tell he has no idea how to find a place that’s safe, appropriate and economical.
My first apartment choice was an unqualified disaster. My roommate moved in three months earlier than me, enough time to set up patterns for her cats to urinate on the carpet (the odor made your eyes water) and to leave dirty dishes long enough that the roaches swarmed as soon as the lights were turned out.
I complained. She made some changes, but ultimately I couldn’t get out of there fast enough.
The next place wasn’t much better. A firetrap on the second floor, with a neighbor who cooked on his hibachi at the top of the stairs every evening.
The next place after that was a house I shared with two other girls. It was a lot better, but not without its inequities. I allowed them in order to get along.
It helps to know what to think about. He’ll need more help than the admonition I could get away with making to my other kids, “don’t make the mistakes I made.”