Monday, March 15, 2010

Don't Talk about that Future!

Pamela does not like when we talk about the future, especially the time when David goes to college. She thinks of herself as a big girl (which is quite accurate) and asks me if she can still play with her babies when she is 21 (next week, as a matter of fact). She corrects me when I order four adult tickets for the family at the movies.

We consider Pamela a very late bloomer. We have guardianship and, at present, Steve's insurance covers her medical needs (which are few since she is healthy and not taking any medications). Because she is still making progress in many areas of her development, we are not guiding her to transition into the work world because she is not ready.

Employment is a huge issue for even the most high-functioning people in the autism spectrum. "Only 15 per cent of autistic individuals in full-time employment" in the U.K. (hat tip: Kathy Darrow). An acquaintance of mine bought a farm recently and hired a young man in the spectrum, who has a master's degree in his field, but has gotten fired from one job after another. Often, the issue is not knowledge, ability, or I.Q. but dynamic thinking and the ability to work with people. While folks in the computer industry and arts tolerate the quirks of autism, the rest of the world is not so forgiving.

I applaud families like the Nunns who have encouraged their autistic son Dustin to follow his dream to publish his own cartoon book. They helped him build a website featuring his finished product and put up homemade commercials on You-Tube (Hat Tip: Bonnie). Their creativity and determination inspire me!

I worry a lot less about these statistics than I used to because we are finally seeing Pamela think more flexibly. For years, she wrote lists of movies, categorized by dates, leaving a paper trail a mile thick. The other day I found the most delightful thing. Pamela wrote her first list of movies BY THEME!



Peeps! This is big!!!!! But, that's not all. Today, we were rating our favorite composers in Spanish.

Me: "Mozart es numero uno."

Pamela: "Mozart es numero dos."

Me: "Es Tchaikovsky numero uno?"

Pamela: "Si."

Me: "What's Bach?"

Pamela: "Numero dos."

Me: "You mean, Bach and Mozart are both numero dos?"

Pamela: "Yes."

I was so excited to know that Pamela was flexible enough to consider a tie!

Two years ago, Pamela attended Winter Jam, the place least likely to attract a person in the autism spectrum: a very loud, contemporary Christian rock concert. She skipped last year but asked to go again this year. Fortunately (or unfortunately, depending upon one's perspective), our youth group sent an advance scout party to score good seats for us. I swear my ears rang for a week afterwards! The volume did not deter Pamela: when her fingers grew tired, she tried out ear plugs: for the first time EVER!


A couple of times, I worried about Pamela melting down. We were hungry, so I went to get a burger (bunless for her) and fries. She stayed with the youth group, while I got the food. After she finished her food and drank about half of her soda, I accidentally knocked it over. To my shock (and delight), she took it in stride and did not even fuss. Years ago, this would have meant a meltdown or a trip to the concession stand to prevent one. Then, intermission took way too long and Pamela was ready to head home. Since we depended upon the youth group for transportation, we could not leave. I gave her the option to walk outside and wait until the concert was over. Pamela quietly fussed her way through her decision-making. Trust me, I would have happily headed out for the music was loud, but she chose to stay for the whole thing.

Recently, I came across this blog post that listed the big three skills that individuals with autism should master. It ought to be renamed three STATIC skills. What about the big three dynamic skills that would give the most bang for their buck in the work world? Good enough thinking, multi-channel communication and emotional regulation? Fuzzy logic, collaborating, and resilience? Hmmm . . . thinking back to Pamela's weekend with her Oma and Opa, I would say that alternative thinking, perspective taking, and emotional regulation greased the skids for my parents.

4 comments:

Bonnie said...

After lurking I just wanted you to know I've ordered RDI for Children, Adolescents and Adults. We can't afford a consultant so I will be eagerly reading over past posts.

Kathleen said...

Fun to see her enjoy the concert! Thanks for making others aware of autism in a personal way.

walking said...

BONNIE!!!!! I am so thrilled for you. Another good book is "The RDI Book" which you can order at the connection site.

The biggest things are to realize that the goal is to give your son opportunities to think. You do that by:

(1) slowing down, slow down the pace of interactions, slow down your life,

(2) start working on nonverbal communication (infants practice this for the first 18 months of their lives)--without nonverbals, we end up with people with autism who talk (usually in monologues, perseverative conversations, or drill-like Q and A),

(3) use declarative language (stating what you observe, think, feel)--in watercolor class, I will say, "Abbie is mixing her colors" instead of "Get out the red and blue."

(4) the focus is NOT activities; it is finding moments during the day when you can do (1),(2),(3) with a focus on process (being together) not product (learning a skill).

(5) recording yourself helps you see how things went; early on, I was so focused on me (changing my interaction habits), I lost track of Pamela. It was TIRING for me for a few months.

walking said...

Thanks Kathleen! The more we all know about autism, the easier all of our lives will be.