TxP2P: Dan recommends …
If you are on Facebook, this link will take you right to the AutismOne Adult Issues Think Tank group, Dan says.
http://www.facebook.com/#!/
TxP2P: Shahla recommends …
This page guides you to conference presentations and papers that explain some of the latest research in applied behavioral analysis.
Please remember that scores of teaching techniques under this broad umbrella — applied behavior analysis — is the most effective early intervention tool we have for young children with autism.
There are lots of other techniques that have been tried through the years. Few have delivered on the promise of a cure, or recovery, or whatever people want to call it when they think the autism has gone away.
Quackwatch has been around for a long time to help people ferret out all kinds of questionable medical claims. The autism world is so susceptible to these, Quackwatch has devoted an entire page just to autism.
More for TxP2P friends
Many wanted to know more from the morning session Dan and I had about adults with autism, and the highs and lows for their parents.
The big question for so many of us: where will our child live?
Dan invited parents to join an ongoing discussion on Facebook with the AutismOne folks. You have to join facebook for that. There is a separate website for their adult residential services think-tank.
Also, Mark and I were inspired by the story of Bittersweet Farms, which we first learned about in the early 1990s. A big part of the reason we moved our family from the big city to a small farm was the beauty of what these people were accomplishing and hoped that some day, we could replicate it.
For my Texas Parent-to-Parent friends
Dan Burns, Shahla Rosales and I made many promises to the friends we made through the Texas Parent-to-Parent Conference in San Marcos this weekend. Over the next several days on my blog, I’ll be rolling out some of those important links and explainers.
First, here is the link to a training module developed in the mid-1990s to help police respond more appropriately in situations that involved people with developmental disabilities.
http://www.eric.ed.gov/PDFS/ED408503.pdf
The document is quite large. If you aren’t able to download it, work backwards to the government’s URL, www.eric.ed.gov and search on “police training and developmental disabilities.”
I know the people who put this unit together and they did top notch work.
Stay tuned. More resources to come.
Cows, milk and school economics
We’ve done pretty well teaching our kids the value of money, getting them from the allowance stage all the way to their first credit card offer, one or two of which came with spending limits higher than our own.
Sam manages his own earnings and expenses. We had a scare when he first turned 18 and we helped him get a debit card. He lost it at the dentist’s office several months later and we scrambled to shut everything down before the person who “found it” bought more than a tank of gas. But sitting down with the Denton police to file a report made an impression on Sam, and he hasn’t lost the card in the four years since. He likes Microsoft Money and its tools that help keep track. He asks me a question from time to time, so I know he’s thinking about his savings and taxes, too.
Frankly, he spoiled me a little. He’s not much of a “consumer” and likes his clothes well-worn. Too well-worn, sometimes.
The two younger kids are just as capable, but school demands make it difficult for them to come off as savvy. Summer is here, so I haven’t heard “I need $5-10 for lunch after the track meet/band contest/play practice,” or “Can you write a check for $15 to buy a club t-shirt/photo/bucket of cookie dough” for several weeks now.
Our tax relief with the superintendents’ victory over Robin Hood and his merry men in the Texas Legislature felt particularly short-lived these past several years with the kids in high school.
All’s fair in love and politics until recorded votes, yet I couldn’t blame the lieutenant governor for the local rule that required my daughter to purchase a catered pasta-and-beef vinaigrette because no sack lunches were allowed on the bus to the band contest. Thankfully, that rule was short-lived, too.
When the children were young, I was happy to show my support for my children’s education and their teachers. The supply lists got longer as they got older, and the bundles got more expensive each year. The year the tab came to $300 was the last I bought supplies as part of a PTA fundraiser. After that, I tried to reuse. We adopted the phrase, “shop the house.” The kids scrounged and traded first, crossing stuff off the supply list before we went to the discount store to get the rest.
One troubling year, a teacher asked us to replace Sam’s missing supplies, such as scissors and tape, several times before she discovered other children were shopping at his desk.
Some items we bought — construction paper, paper towels, tissues, hand sanitizer — were going into a shared stash in the supply cupboard. I wanted to rebel when I saw the mountain of paper towels and facial tissues. I also wanted to trust the teachers, but a box per child, maybe two, but not three, seemed like it ought to do for the year.
A year later, I looked at the number of No. 2 pencils on the supply list and did the long division myself – it worked out to a pencil a week. That’s a lot of long division. The rebellion began. I bought half the required pencils.
Each year there were oddly specific requests, too, such as one red pocket folder with brads or a pack of unlined index cards and alphabetical dividers – and don’t forget the file box. Occasionally, these oddities came home at the end of the year unused. I grilled one hapless teacher until she confessed. Sometimes lessons plans were just that. Plans.
My rebellion broke wide open. I became one of those parents who sent their kids to school with half a pack of mis-matched markers and old pencils with new eraser tops. Michael kept telling me I bought the wrong kind of poster board home from the grocery store for his fifth grade social studies project. The right kind involved a special shopping trip and ten times the money, so I ignored him. He got a B. This year he turned 19 and think he’s finally forgiven me.
Sanity returned – temporarily — in middle school. Those teachers didn’t ask for much more than loose leaf paper and map pencils. Perhaps that’s because so many middle-schoolers can’t remember their locker combination from Friday afternoon to Monday morning.
As our kids reached high school, Sam led us down the primrose path. He clawed his way to high school graduation, so there wasn’t a lot of time for extra-curricular activities. School for him required little more than pens, pencils, folders and loads of loose leaf paper.
But then came Michael and Paige – with band, athletics, theater, student council, French club, color guard, and more. When Sam shared his receipt he paid for tuition and books for his first fall semester at the local community college, we noticed the total. It was less — far less — than the tab for his siblings’ fall semester at Argyle High School.
Paying for high school went just as upside down as everyone’s jumbo mortgage in the housing bubble. When the national spotlight fell on our school’s homecoming dance three years ago, I knew what the problem was. What parents conned into buying $250 mums and $400 gowns wouldn’t holler? Not about dress codes or dancing distances, just holler, loud, in general?
We need a new rubric for school economics.
I think about a Dear Abby column we clipped and put on the refrigerator when Sam was having trouble differentiating world economic systems. It used the analogy of “you and your two cows.” We kept it on the refrigerator until the exam. Every time they reached for milk, they were reminded that capitalism meant you kept your cows, and the sold the milk. Or when they raided for a midnight snack, they understood that facism meant the government took your cows and shot you.
Michael though it was a hoot. Sam, my literal-minded guy, had to keep telling himself it was an analogy.
And I think about my dad and that one summer after he retired from dentistry and helped his friend out by milking cows. His friend paid him, but it was minimum wage. After that, when he bought things, Dad would sometimes take to saying “I’d have to milk cows for four hours to pay for that.”
Now that, Sam understands.
For example, class dues. These are utterly necessary, hence the name “dues.” If you don’t pay them each year, the school does not permit your child’s purchase of $150-per-couple prom tickets, which voids any other of those once-in-a-lifetime, must-have, over-the-top prom purchases. Cost of class dues: three hours of milking cows.
Band instrument rental. If a child plays an odd instrument, such as the oboe, the school provides the instrument. This is good news. A school rental is far less than a rent-to-buy agreement for trumpet or saxophone that the child outgrows as soon as the instrument is paid for. However, oboes are not suitable for marching band, which means the child must join the color guard. This is second only to cheerleading in its specialty equipment needs – such as tunics and tops, pants and shorts, jackets and warm-ups, custom bags, shoes, gloves, decorated flip-flops, make-up, hair gel, and false eyelashes. All these required items ensure that when the flag is tossed up for a double-and-a-half spin, it gets caught, instead of falling on your child’s lip. Cost of band instrument rental, ten hours of milking cows.
Health physical. This is required if your child enrolls in athletics for a physical education credit and joins the cross country team. This is good because the school provides the uniform and you need only need to buy two kinds of shoes, one for training and one for racing. Oh, and lots of socks. The school also provides a low-cost physical before school starts, so all the returning athletes know about it and don’t tell the new guys. You take your child to the regular pediatrician to learn that your insurance covers a well-child check 100 percent, but doesn’t cover sports physicals. Cost of health physical, thirty-six hours of milking cows.
Yep, Dad, I like that rubric.
Question authority
I’m on the hook for two presentations at the Texas Parent-to-Parent conference in San Marcos June 24-26. In one presentation I’ll be working with Shahla Rosales, a professor of applied behavior analysis at the University of North Texas, on ethics in treatment decisions. She’s come up with six guideposts for clinicians. She shared them with me a year ago and they resonated so wonderfully for me, as a parent, that I proposed we offer the same talk for parents at P2P.
I’m so lucky that she said yes.
I’ll be teeing up the talk, sharing some of those school-of-hard-knocks stories that seem to define the world of parents who have children with disabilities. I’ll focus on some of the hazards in our attitudes and fallacies of thinking. Shahla encouraged me to key in on one common fallacy of reasoning that clinicians bring to the table with treatment decisions — appealing to the wrong authority.
Treatment choices should be evidence-based, but not all evidence is created equal, Shahla reminded me. Parents are sometimes in a better position to vet the rigor of evidence simply by questioning its authority with clinicians. Simply put, ask them to explain it to you.
Case in point: when Sam first began receiving services in preschool (I shared this story in my book), I was lost during an ARD/IEP meeting that went over test results. The speech therapist said that Sam could not touch his nose when he was asked. I asked her why that was important. From my perspective, as a young mom, I knew Sam “couldn’t do” things. That was why we were there in the first place. The teachers and therapists developed an exhaustive list of things Sam wasn’t doing, which did me no good. I could have written the list out for them and saved them a lot of time. But I asked the therapist to explain why he wasn’t doing some of those things, and was stunned when she couldn’t answer me.
Of course, she was embarrassed.
She followed through, however. She called up a former professor and called me several days later with the answer.
She said that most young children learn words from context. If you point out the zit on your nose, talk about blowing your nose, get a tissue to wipe your nose, or bump your nose on the door, and make some drama over that, most children learn that “nose” belongs to that sticking-out thing on your face. I recognized that Sam needed to be told things directly to learn them. After that telephone conversation, I stuck a computer label identifying dozens of things in the house for Sam. I also made him a shoe box full of vocabulary cards.
That and other direct interventions helped his early vocabulary explode.
I try to remember to be brave and ask questions and have things explained to me, because it never fails in creating a better environment for learning.
The hippies got that one right: question authority.
Overheard in the Wolfe House #5
Sam: It’s hard being a picky eater. You have to try so many new things.
Paige [with furrowed brow]: That doesn’t make sense.
Peggy: Yeah. [pauses] Wait. [pauses again] Yes it does.
Overheard in the Wolfe House #4
Sam: (after working for four days to get the wi-fi working on his old PC) Why is it that once you give up all hope then the problem is fixed?
Michael: That’s just how it is, Sam.
Overheard in the Wolfe House #3
Michael: So how long are we going to let that orb spider spin a web in the middle of the living room?
Paige: Wait, let me get my camera.
Showmanship 101
Sam competed for the first time as a Class A rider last weekend in the Equestrian State Special Olympics at the Brazos County Expo Center in Bryan, Texas. He’s been riding at the Riding Unlimited stables in Ponder since he was five.
Life with Sam teaches me something everyday, but this past weekend was full of beautiful little life lessons, similar to Robert Fulghum’s book, All I Really Need to Know I Learned in Kindergarten.
For example, a potluck becomes a team dinner when someone brings the giant bowl of ramen noodle salad.
At Saturday night’s dance, I learned from Connor Bateman that it’s good to ask everyone you can to dance with you, and to always say yes when someone asks you to dance.
From Brett May, I learned to avoid using many words when one, well-chosen word takes care of it.
From Anna McArdle, I learned that you keep turning Mr. Big around until the gate is within your reach.
And from Sam, I learned Showmanship 101 — just because everyone in your class (ages 8 to 29) might be half your age, doesn’t mean they’re half the competition.