Monday, May 25, 2009

Looking around in Awareness

Let us not look back in anger or forward in fear, but around in awareness. James Thurber

Like many children with autism, Pamela has a hard time knowing where to direct her attention because her brain has a hard time filtering out the insignificant. Back in 1995, she started complaining about bees whenever we did table-work in the kitchen, located next to the front door of our apartment. After careful investigation, I realized that the fluorescent lights in the hallway outside of our apartment were on the blink!

All sorts of sounds bothered her and even terrified her: the car wash, escalators, elevators, vacuum cleaners, etc. Rather than studying the novel sound to look around in awareness and determine if she had any reason to fear, Pamela would flip out! Two rounds of auditory integration training helped somewhat but did not completely eliminate her biggest fears: elevators and popping balloons. Thanks to Toy Story 2, Pamela conquered her elevator phobia at the library in 2004 and even went to a very loud Christian rock concert in 2008. While her sound-based fright is nothing like it once was, she is still learning to overcome her phobias.

Because she is growing more comfortable in her own skin, Pamela is better able to look around in awareness and control her immediate impulse to wig out at something frightening, scary, or just plain annoying. The other day, we were driving around in our commuter car that has power nothing (I mean it, it does not even have a radio!!!!). Pamela suddenly pointed to the AC--the one luxury no car in Carolina can do without--and told me to turn it off! Because she acted calm and neutral, I obeyed her unusual command. Then, she placed her hands in front of the AC vents, so I said, "The AC is off." I suspected something was bothering her so I listened very carefully and noticed one of the windows was slightly rolled down. So, I nonchalantly rolled my window up, and nothing changed. Pamela saw what I did and she rolled hers up and the sound disappeared.

This vignette may seem like nothing, but, to a parent of an autistic person, this was big. While I did not even notice the noise, Pamela was having difficulty filtering out the wind blowing through a slightly cracked window. My brain filters out more noise than hers (perhaps because I grew up with six rowdy siblings), which is one dynamic function of the pre-frontal cortex. Her cortico-limbic network grew wary, while mine was oblivious. Clearly, her attention-filtering algorithms, a dynamic function of the brain, work differently from mine. Of course, Steve reacts to weird car sounds just like Pamela does.

Rather than impulsively react, Pamela studied her surroundings to find a possible source of the novel sound. She decided that investigating that noise was important and she tested out the AC theory by telling me what to do. Her pre-frontal cortex seemed to managing her uncertainty well because she inhibited impulsively reacting and choose to think through what might be happening, which is a second dynamic function of the brain.

When the sound did not go away, Pamela checked out her environment further and referenced my actions. Because she has learned to trust my actions from previous experiences dealing with scary sounds, she stayed calm and continued to think about the meaning of my actions, a third dynamic function of the brain. She understood my window theory and, when my actions made no difference, she tried it with her window and solved the problem.

Chapter 1 of The RDI Book covers five dynamic functions of the brain, the three mentioned in the previous paragraphs and two blogged recently. Pamela has been confronting her fears lately--of her own free will and on her own terms--in ways that relate to the three dynamic functions of the brain mentioned in the book. She is teaching herself to filter out irrelevant information, study the situation, and develop meaning based responses when it comes to her dislike of getting her clothes wet and her mild fear of popping balloons. It all started about a month ago when she became interested in filling balloons with water and dashing them on the brick patio. At first, I had to tie them for her but she can now do it herself.

One day, Pamela could not pop a water balloon no matter how hard she threw it. I said, "What about jumping on it?" Without thinking she stomped on it and the balloon popped, splashing water on her pants. She stood there stunned for a few seconds and then she LAUGHED. Pamela did not even run into the house to change her clothes! Friday a week ago, Steve, Pamela, and I went to the bank on a very rainy day. The rain had stopped and I noticed as we were in the parking lot that Pamela walked in the puddles and carefully splashed water. Last spring, I remember having to be careful where I parked the car because she would take circuitous routes to avoid all puddles!

The new twist is filling air balloons. Twice last week, Pamela handed me an air balloon (that she had tied herself) and asked me to pop it. She squealed and left the room BUT she was smiling, not cringing. Yesterday at the mall, four little girls were carrying BIG balloons filled with air. Pamela squealed a bit at the sight of four ready-to-pop-at-any-moment beasts but had a wide, curious smile on her face. Pamela even drew a face in a pink balloon and named it Wormy!

Friday, May 15, 2009

Un-Becoming Mrs. Bennet

The unprogrammed life is going very well. Pamela has watched Monty Python, Joseph and the Amazing Technicolor Dreamcoat, and The Prince of Egypt and is waiting for an episode of Big Comfy Couch from Netflix, and David is waiting for Sonic the Hedgehog. We spent the past two nights viewing the Pride and Prejudice mini-series.

Mrs. Bennet, the heroine's mother in Pride and Prejudice, was a terrible guide for her girls in emotional regulation. She lets her moods be buffeted by any and all circumstances, swinging rapidly from one extreme to the next, complaining all the while about her "poor nerves." When her youngest daughter does the unthinkable, she locks herself in her bedroom complaining about "such tremblings, such flutterings, all over me—such spasms" that I was waiting for her to say she was getting a thrill up her leg! Mrs. Bennet would give the airport lady a run for her money in a contest. My consultant would suggest Mrs. Bennet is in desperate need of some thinkspace to learn to be calm and neutral!

Being calm and neutral is critical to set up "a learning environment that optimally balances cognitive challenge and safety" (page 13). Parents and teachers who tremble, flutter, and spasm may end up guiding their children into becoming easily unregulated. Without feeling emotionally safe, their amygdalas go into fight or flight mode and learning stops. Charlotte Mason taught me this a long time ago. In habit training, she explains not to cry out "because she knows that a summons of that kind is exasperating to big or little" (Volume 1, page 123). When we think that everything rests with us, "our endeavours become fussy and restless" (Volume 3, page 27) and "the thing that her children will get from her in these moods is a touch of her nervousness--most catching of complaints. She will find them fractious, rebellious, unmanageable, and will be slow to realise that it is her fault; not the fault of her act but of her state" (Volume 3, page 33).

Ideas are great, but the proof is how we act in real life! The other day, I was fixing Steve's lunch: trail mix, fruit, and heavy salad (he likes this stuff, REALLY). I opened a brand-new jar of heart of palms and a thick layer of green mold covered the top of each one! Steve, the one who usually makes such nasty discoveries, tends to freak out a bit because of his affinity with Monk and loses the opportunity for teachable moments. Calmly and playfully, I carried the jar to Pamela and wrinkled up my nose, "Ew!" Her face mirrored mine and she said, "Yucky!" I said, "The palmitos are covered with green mold." She mirrored my words, "Green. Moldy! Ew!" Then, I added, "Mold will grow on the palmitos if you put the jar back in the cupboard." She said, "Throw in the trash." I asked, "If you open a new jar, do you know where it goes?" She said, "Refrigerator!"

Note to Self: I will not digress about David's account of a failed science experiment that he just found shoved in a drawer, preserved in a plastic bag for TWO YEARS, that ought to be in the dictionary for the word mycotoxin. Calm and Neutral! Deep cleansing breaths, well, not too deep . . .

The vignette with Pamela may seem simple on the surface, but it illustrates two of five dynamic functions of the brain covered in the first chapter of The RDI Book. The first is vertical integration, the interplay between the basal-ganglia (the low-level clerk doing things by the book) and the prefrontal cortex (the CEO telling the clerk when to deviate from the rules). Some rules of putting stuff away that Pamela has stored in her procedural memory are:
  • Throw empty temporary containers in the trash.
  • Put empty permanent containers in the sink.
  • Put something you took out of the refrigerator back in, if it is not empty.
  • Put an opened can from the cupboard into the refrigerator, if it is not empty.
  • Put an opened jar from the cupboard back into the cupboard, if it is not empty (oil, vinegar, vanilla, etc.)
When we buy heart of palms in a can, Pamela puts it into the refrigerator. If in a jar, she sometimes forgets because she lumps it in with bottled stuff. Come to think of it, Pamela occasionally puts newly opened ketchup, mayonnaise, pickles, and mustard back in the cupboard too.

Pamela's clerk was following standard operating procedure, and the interaction we had about the mold was to draw her CEO's attention to a problem. When I slowed down and spotlighted what happened to the palmitos, I tried to help Pamela encode an episodic memory for future events. The next time I find any open jars in the cupboard, I will remind her of the palmitos and give her CEO a chance to consider putting them in the refrigerator.

We were also tapping into a second dynamic function of the brain, lateral integration (which folks in RDI circles call broadband communication). Our face-to-face interaction included facial expression (wrinkled nose and disgusted look), auditory non-verbal (how we exaggerated our pronunciation of "Ewwwwwww!" and "Yuuuuuuck!"), gestures (pointing at the mold), and posture (both leaning into the jar) and blended into one message: nasty things happen when palmitos are not refrigerated. Lateral integration allows us to tap into our intuition and to integrate our perspective with that of others, emotions, and ideas.

Later that day, I struggled to unscrew the cable connection, which was not secured into the wall at all. Simple mechanic things befuddle me and test my ability to remain calm and neutral. Pamela grew antsy while I struggled to unscrew the cable and showed signs of escalating anxiety. I turned to her several times and smiled broadly to reassure her. I spoke in a bright voice to update her on my progress. Because of her edginess, I did not further stress her out by spotlighting my problem solving techniques: using a rubber jar opener to grip the nut with a back-up option of unscrewing the electrical plate. Her feeling of safety was too low for me to place anymore cognitive challenges on her.

Steve and I believe the decision to kiss cable good-bye is sound. Our church's Wednesday night Bible study on Philippians 1:21-22 ("For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know!"). The pastor asked what things of this world get in the way of living in Christ. When someone mentioned television, he brought up a good point: the purpose of television is not to report the news (usually bad) nor entertain. Its real goal is to sell stuff because advertising pays for the programming.

Later that night, while we were watching Lizzie and Mr. D'Arcy engage in verbal combat, Pamela walked into the television room with her homemade guitar (three rubber bands on a plastic plate) and verbally riffed "Smoke on the Water."

Tuesday, May 12, 2009

Pulling the Plug on Cable Television

When we moved to a remote island near the Aleutians in 2001, we gave up cable. Although the island was wired for cable, the house we rented was not. Even going through 9/11 and the Columbia shuttle explosion--which was hard because one of the astronauts and I were in the same company at the boat school and company-mates are like family--did not convince us we were missing anything. We still had Internet! When we moved to Minnesota in 2003, we chose not to have cable installed and did the same for the house we rented in Carolina.

We changed our mind when we bought a house here in Carolina and two years of the programmed drivel offered by cable, satellite, etc. is not worth what we pay per month. We realized that less is more when it comes to channels because we end up doing the same thing every night: watching Fox News and then reruns of Monk or King of the Hill, which are both in their last season. The last straw was when BBC America pulled reruns of Top Gear (which I find funny even though I am not a motorhead).

I think we have way too much legislation on the books and I do not favor regulations that require a la carte choices for cable or satellite subscribers. I would rather the marketplace drive this, and we are voting for a la carte with our feet. When the cable representative asked me if they could do anything to win us back, I told him flatly, "If you have a list of people interested in a la carte choices, put us on that. You can call back when that option is available." The guy laughed, as did I. But, the idea is not as crazy as you think, for others have done the same.

Believe it or not, Steve and David are both all for it, but we expected the hard customer to be Pamela who delights in flipping through channels, changing the colors on the guide, and watching everything from the shopping networks to the weather channel. We made this decision about two months ago, and I had no idea how to broach the subject. Occasionally, I would lightly tell her things like "I don't like cable" or "I don't need cable anymore." Occasionally, I would tell her we were taking a break for a few hours and we turned off the DVR completely. We halted our campaign over Easter because Steve's parents were in town, and we knew having something to watch at night would put them at ease. Steve reminded me to renew the anti-cable campaign last week, and I was struggling to find a way to become unplugged.

Pamela must have overheard our conversations and came up to me last Friday with a most startling question, "What will we get rid of?" I lightly said, "Cable television!" Without blinking an eye, she said, "Yes!" She asked me about it off and on over the weekend, and today I finally made the call. Tomorrow, we return the box and it is finished. Between the library, Netflix, and our own collection of DVDs, we will have plenty to watch in the evenings. Or, we will read books, do our hobbies, use the computer, or enjoy the silence . . .
The eye is the lamp of the body. If your eyes are good, your whole body will be full of light. But if your eyes are bad, your whole body will be full of darkness. If then the light within you is darkness, how great is that darkness! (Matthew 6:22-23)

Saturday, May 09, 2009

Happy Mother's Day Eve!

This morning I burst out in a sweat, taking care of laundry, ironing a shirt for a Mother's Day banquet, and cooking a package of bacon to put together a brunch box for Pamela to take to said banquet (Van's gf/cf mini-waffles with syrup and vegan butter, lemon soy yogurt, and bacon). Steve, of course, remarked that, if I did not procrastinate so much . . . then again, David and I spent the evening in Sumter and did not arrive home until 11:45 last night! That's my excuse, and I'm not backing down!

Pamela, my mother and I dressed up somewhat for the banquet. My mother is awesome and it seems like God gave us completely different attributes: I sing and learned to play the piano and recorder; she does not sing and learned to play the harmonica, violin, and accordion. She is an awesome cook and gardener, and I have a black thumb in both venues. She loves to sew and makes the most gorgeous quilts, but sewing makes me cry in frustration. We both knit and crochet, feed the birds, read living books and love the smell of laundry hung outdoors, and we both love the Lord. Her mother was such an awesome woman, that we got her story published in the anthology, My Mom Is My Hero in a chapter called "My Mietze." (In case you don't believe me, my mother spent her childhood escaping bombs in eastern Germany, Russians advancing toward their border, and deathly conditions in a Danish refugee camp during World War II.)

The women of my church put together a wonderful program with the theme of mothers being a light for their children. They decorated all of the tables with oil lamps! The foods was delicious, the music inspiring, and the message a reminder of how much God has taught me since becoming a mother through this journey with autism: the importance of relationships both vertical (with God) and horizontal (with people) which form the shape of a cross, the need to stay in the word and in prayer, referencing God when I feel uncertain, and the joy of friendship with fellow believers (and are surprising hard to find at times).

When we arrived home, Steve surprised me with some lovely presents! If you haven't figured it out already, I avidly watch birds. The latest caper that cracked me up was the brown thrasher taking a bath. After watching it madly splash away, I figured out why they are called thrashers! Later I snapped a shot of a fat mourning dove and an elusive blue jay who is much shyer than I expected and skittish around cameras.

And, what thoughtful gift did Steve buy for Mother's Day?

Well, it wasn't flowers!

It was not chocolate (which is always appreciated) either!

He bought a gorgeous seed tube and a bluebird box! And, yes, I am Snoopy dancing!

My favorite portrait of motherhood is by someone who was never a mother herself: Charlotte Mason.
It is not for nothing that the old painters, however diverse their ideas in other matters, all fixed upon one quality as proper to the pattern Mother. The Madonna, no matter out of whose canvas she looks at you, is always serene. This is a great truth, and we should do well to hang our walls with the Madonnas of all the early Masters if the lesson, taught through the eye, would reach with calming influence to the heart. Is this a hard saying for mothers in these anxious and troubled days? It may be hard, but it is not unsympathetic. If mothers could learn to do for themselves what they do for their children when these are overdone, we should have happier households. Let the mother go out to play! If she would only have courage to let everything go when life becomes too tense, and just take a day, or half a day, out in the fields, or with a favourite book, or in a picture gallery looking long and well at just two or three pictures, or in bed, without the children, life would go on far more happily for both children and parents. The mother would be able to hold herself in 'wise passiveness,' and would not fret her children by continual interference, even of hand or eye––she would let them be. (Volume 3, page 34)

Thursday, May 07, 2009

Seeds of Dynamic Learning

Suppose you were going to teach your child to wash her hands. The typical way would be to head to the sink and wash hands together, step-by-step, side-by-side, or do it hand over hand. In the autism world, we often get more elaborate by making a picture schedule with PECS or putting together a series of ABA cards for each step (if you are skeptical, go here). When a child has a particular problem with this ritual, we might even write a social story to address the issue. For older children, we often type up a list of steps or organize highly structured tasks, often done independently through work boxes.

The reason for the static teaching styles given above is usually challenges with executive functioning: "a set of mental processes that helps us connect past experience with present action." Rather than fill in the developmental gaps needed to learn how to code and rely on episodic memory, it is more expedient to compensate by relying on strengths (visual processing, pattern recognition, and enjoyment of routines). When you are living autism 24/7 by homeschooling, working with large groups of autistic children in the school system, or facing challenging circumstances, I can completely understand the very real need to set up a system that works on automatic pilot. Where I get concerned is when nearly all teaching is done in a static fashion.

We do not always learn life skills statically. Two weeks ago, David, my sixteen-year-old neurotypical giant, wanted to make macaroni and cheese. I asked if he needed help with his first attempt, but he declined. The first batch was horrible, and we gave it to the dog. I asked him what he thought happened, and he said they were too chewy and did not cook long enough. I asked what he could do to prevent that problem in the future. He decided to taste test before pouring off the water. When he was making his second batch a few days later, I noticed he did not boil the water first. I told him that noodles turn out better if you boil the water first. This time, the mac and cheese was edible, but not perfect. A few days later, his third time, the texture of the noodles was spot-on, but the cheese sauce was too thick and he told me he needed to add more milk. His fourth try, made yesterday, was PERFECT.

The new RDI book (sample chapter here) started turning my wheels on the difference between static and dynamic learning. Dr. Gutstein, author of the book, based RDI on the theory that the autistic brain is underconnected (even genetic research is starting to support this theory). He proposes that neural connectivity depends on dynamic learning through experiences with the caveat that the optimal learning environment must strike a balance between continuity (sameness, familiarity, predictability) and flexibility (being challenged to adapt to novel and uncertain situations). In short, challenge the child without instigating meltdowns!

Every chapter ends with a series of questions that require dynamic thinking. My brain has been working overtime to answer questions like "If you were to construct an educational program that enhanced dynamic neural integration, what would it look like?" I reflected quite a bit on a quote he pulled from the 21st Century Learning Alliance, "The brain learns best when it is trying to 'make sense'. When it is building on what it already knows. When it is working in complex, situated circumstances. When it accepts the significance of what it is doing. When it is exercising in highly challenging, but low threat environments." As I ponder this, I am already seeing how a Charlotte Mason education enhances dynamic neural integration, but I will blog that later.

Before I left for Minnesota, Pamela told me she had planted an apple seed. She watered it for a few days, but nothing grew. This is the first year Pamela has shown an interest in gardening, so I bought some supplies. Pamela seemed to know a great deal about planting seeds, so rather than showing her what to do, I decided to let her show me what she knew. I played dumb occasionally so Pamela would have more opportunities to guide me. I think I need to find more opportunities like this where Pamela gets to think on her feet.

Sunday, May 03, 2009

The Skunk and Arctic Animals

For about a month, Pamela and I have been narrating episodes of her life with the hopes of coding coherent memories with meaning and feeling. Life has been so hectic, I have not had much time to blog it. Sometimes, we watch a video of the activity and talk about it before doing the narration (when we made laundry soap). Sometimes, we sequence and review pictures.

A few weeks back, we visited the bookstore at the mall to spend Pamela's Easter money. Later, I asked Pamela to tell what happened like a story ,but she did not know exactly what I meant and fell back on her power words, which Word analyzed as 19 words with 3.1 words per chunk (those aren't exactly sentences):
Skunk in a room. The skunk was great. The animals were great. The book was good. CD David. Pay.

I thought she might catch on if we fell back on the question-and-answer syntax we practiced in the association method. I asked Pamela a question and she answered in a complete sentence. Stringing all of her questions together constructed sentences that Word analyzed as 25 words with 4.1 words per sentence:
I saw skunk first. I saw animals, too. I saw a book. I saw some CD's. I saw some cards, too. I do check out.

I realized that, when I framed the questions for the sentences above, I was doing all of the thinking and this is nothing more than me getting Pamela to think in a prompt-response format, a static measure of her understanding. My goal for her is to come up with something dynamic, the product of Pamela contemplating the highs and lows, unique moments, lessons learned, feelings (good, bad, and ugly). To scaffold this, I came up with a process for reviewing pictures:

* I either take pictures of items or I export and print pictures from the original digital recording.

* I print a filmstrip graphic organizer to frame the selection of the six most meaningful pictures.

* I try to have on hand more than six pictures so that Pamela has to pick out the most important details for her oral narration.

* I also wrote words on cut-up index cards to help Pamela with transitions: first, next, then, and then, after that, and finally.

* Pamela and I take turns selecting six pictures and narrating the episode to spotlight how people recall different moments from the same event.

* Sometimes, I alter her filmstrip only slightly or narrate what she picked in my own words to spotlight that people can tell the same story differently.

The following video shows how we worked on this together.

My goal was for Pamela to narrate the visit to the bookstore coherently with complete sentences. Before she retells the episode, I put away all pictures so she can rely on pure memory. Her final narration of the story in the video below shows how well we succeeded, 42 words at 6.0 words per sentence:

First, I saw some toys. Next, I saw a skunk. Then, the skunk had a tail. And then, I saw some books. And then, I sat in the floor. And that, I saw some pens. I saw some toys and a book.

We have reviewed pictures to narrate a variety of activities. I introduced the idea of using days of the week for Steve's parents' visit at Easter. To practice thinking meaning, I pulled together several episodes in which Pamela found things including the toys she bought at the bookstore and the missing cheese. We even narrated planting seeds, which I promise I will blog this week, by sequencing and reviewing pictures.

On Wednesday, they went to Zaxby's. On Thursday, they played some cards. On Friday, they went to the grill. On Saturday, I saw a health food store. Sunday, they went to the church. On Monday, they went back to Louisiana.

Saturday, they found the cheese. Thursday, David helped the blanket. They helped the skunk. Then, I founds some toys and book. Finally, I did a great job.

On Wednesday, Mommy had a bag. I got the scissors. They opened his bags. They put the dirt on the pot. They put the seed in the dirt. They watered in the dirt.

On impulse, I bought a a cute little DK game called Silly Sentences. I did not do anything formal here. We just put together sentences, some serious and some silly. Pamela felt a little overcome with joy when I started to put together, "A crocodile ate a clock" because she thought of the Tick-Tock croc from Peter Pan. She covered her ears, hummed, and replaced clock with flower. Our goal was the pure delight of putting together words, so I left it as is. Pamela thought of the sentences that reminded us of her favorite book by Eric Carle, The Very Hungry Caterpillar, and fairy tale princesses. I put in some silly adjectives as a preview to including more descriptive words in her narrations down the road.