AUT-2B-HOME IN CAROLINA ~ Teaching our twenty-five-year-old daughter with autism and aphasia, who is still learning about God, the world, and its people with a little help from Charlotte Mason
Steve does everything fast . . . he runs five miles most days . . . he zips through his check-list every weekend . . . he does mental arithmetic rather than use Excel. I can never decide if he is Ricochette Rabbit or Speedy Gonzales! One of the most difficult things about RDI for him is the S word: SLOW! Our consultant came up with a perfect analogy: our consultant is NOT a runner and, if Steve wanted to take her running, he would have to match her pace because she could not match his. Actually, the same is true for me! Steve would definitely have to slow down for me if I ever lost all my marbles and joined him for a jog.
Not only does he need to slow down, Steve needs to try to avoid QPCs: questions, prompts, and commands. Now, imagine asking a former Naval officer and current manager to avoid QPCs! To help him visualize this, we reviewed the Baby Alive video and talked about how he could have avoided QPCs. We realized the key is to fall back on nonverbals and speak declaratively. What worked for Steve was thinking out loud with Pamela. We talked about qualities of being a good guide, such as not being afraid to pause and wait for Pamela to realize she has an opportunity to react, but to avoid demanding a reaction from her.
This may seem obvious and easy, but I remember how HARD it was for me in this stage. I was trying to remember so many things at one time. It looks easy, but it is not! I think he did a fine job of coming out of ludicrous speed and working at Pamela's pace.
This is not dandruff . . .
Get ready to smile! I got up early (6:15 AM) and worked on Steve's laptop in the kitchen. As soon as Steve turned off the house alarm, Pamela spent the next hour, running in and out of the house, checking the skies. This does not surprise me because she spends part of every morning paying attention to the weather. Of course, we know what REAL snow is and what we saw to day was not REAL snow! However, because light flurries are so rare for this part of Carolina, as Pamela well knows, we were very excited!
Today, we worked on helping Pamela adjust to the excitement of her dolls. We noticed that Pamela did not spend any time watching television all day yesterday because the dolls were on a box on a chair in the room wired for cable. I decided to move them randomly from one spot to another during the day. When I put them on the shelf with her videos, she actually touched them and moved them to the red chair. After David laid them on her bed, she carried them back to the red chair. Later in the evening, she took an extended peek (maybe, ten seconds) at the autograph.
Last Friday, I was thrilled to see a painted bunting for the first time and surprised when a Cooper's hawk slammed into our window. The cold must be driving birds of all sorts to our feeder. Today, I saw a male American goldfinch in addition to the usual suspects. My friend, the painted bunting, fed on millet (his favorite seed) for quite some time. He has been showing up regularly starting at 7:30 AM and feeding off and on during the day. I am going to try to leave the handicam on the porch early tomorrow morning to see if I can get better footage. However, I do not think I can top footage of the bunting feeding with snowflakes flurrying!
Snow Showers:
I am gearing up for the possibility of snow showers tomorrow. Pamela knows that it sometimes snows in weird places like Louisiana (last month, Steve's parents who live there snapped this photograph). Having lived in Minnesota, Pennsylvania, Connecticut, Colorado, and Alaska, she definitely knows what snow is and what it means. However, she does not expect snow here in our town. I have my handicam ready for any more conversations on uncertainty, bright and early tomorrow morning.
Loonette and Molly:
Two weeks ago, Pamela and Baby Alive opened presents that completely overwhelmed her! For two weeks, she has not been able to do anything more than take a quick peek in the boxes and run off. Last night, Steve decided to take the two dolls out of the box and Pamela did not freak out and smiled at us. However, we noticed that Pamela was not able to sit in the same room with them. So, tomorrow, I plan to move them into a different room to see if the pattern continues.
Stay or Go:
Pamela had a very tough morning. Steve was concerned about two things on the home front: a heating unit that had ice on it and contractors making preparations to pour a driveway. He was not sure whether or not he would make the long commute to work or work from home today. Pamela was not happy. She could have handled a decision one way or another or a time at which he planned to make his decision. Steve truly did not know all morning, so it gave me the opportunity to work on guiding Pamela's thinking about not knowing. I was not entirely successful at helping her stay calm because we were addressing one of her high level anxieties. She went through about three cycles of fifteen-minute crying spells! Here is what I tried:
I slowed down my interactions with her to spotlight my calm, neutral attitude about not knowing Steve's plans. I let her know I was okay.
I reassured her with physical reassurance (hugs, back rubs, etc.) and kind words.
I told her I understood that this was hard for her. She even apologized a couple of times and I told her that I thought she was brave.
I said it was okay to cry because she was upset. She compared the situation to when a channel goes out or when cable acts up. I knew this was her way of saying this was extremely high anxiety.
We tried talking about other things (like making pizza for lunch and shopping for the ingredients).
I respect her need to be alone when asked unless she was using it as a guise to go pester her dad for an answer, in which case I tracked her like a bloodhound!
It was a very difficult morning seeing her struggle with this, but it was true uncertainty lurking beneath all of the tears. The funny thing is that Steve ended up leaving to go to work but only went to a wi-fi spot in town. He was home in an hour, which she knows is implausible. She told me that her dad did not go to work. She was fine and laughing when I told her it was a joke and gave her a big wink. More than anything, I think she was okay because he had finally made a decision!
Trigger Words:
Another element of uncertainty revolves around trigger words, or words that create such anxiety in Pamela that she automatically overreacts with loud and high-pitched screeching. Usually, she does this when she is playing on the computer, watching television, or listening to a conversation on the phone. Our consultant quickly spotted the consistent pattern in all of these incidents: Pamela had only part of the story! So, my objective is for her to learn how to create space around the trigger word to give her time to apply some whole-part thinking before reacting.
In the following two videos, we talk about Pamela's reaction to trigger words. Because I had her full attention, she did not scream when I said her trigger words. She enjoyed the topics we picked and stayed calm and neutral the entire time. She did not seem anxious or worried. She gave thoughtful answers, except when she was quite tracking with me. Sometimes, Pamela automatically replied "because I said so" which I think is a substitute for "I have no clue". However, once I rephrased what I was saying, she usually gave me a thoughtful reply. She especially loved the story about "selling the dogs" and enjoyed practicing hearing me talk on the phone. She usually does not talk that much when I am on the phone, so she knew it was pretend.
The other day, I was reading a story from Stage 8 (Chapter 8 of 12) in Unit 1 (book 1 of 4) of David's Latin curriculum. Subito, I mean suddenly, it hit me! Holy Cow! I am reading Latin. I am not to the point of thinking in Latin and, if I ever reach that point, you can have me locked up! fabula haec est "pastor et leo"--This story is "The Shepherd and the Lion." David, filius meus, and I, et ego, are enjoying the Cambridge Latin Course, North American, Fourth Edition (textbook and tests) for the following reasons:
They slowly introduce you to tedious parts of grammar (declensions, cases, conjugation) and phasing it in so gradually that it feels almost effortless.
Every book focuses on a period of history and geographic area(s) in the Roman Empire. The books include articles about the culture and history.
The first book grips your attention with its stories about a Pompeian family whose house was preserved by the fallout of the Mount Vesuvius eruption in 79 AD.
Some of the stories are funny and make us laugh. David calls the son, Quintus, a bum because he wrote graffiti and broke the nose of a statue when his discus slammed into it.
One reason this period in history fascinates me is that Jesus and the early church was born then. Understanding the Gentile culture helps me better understand the struggles of the Jews struggling to accept the Messiah, the Jews who became believers, and the Gentiles who joined in that belief. For the past few months, the books I read for "mother culture" are mainly historical fiction from that era with a Christian perspective:
I hope by the end of Unit 4 of the Latin curriculum to read this:
David and I were in the office, quietly minding our own business. A loud, startling thump on the window right above the couch where we were sitting woke us up from our Math-U-See Algebra II lesson. We ran outside and discovered an amazing site. Below the window that got whacked is a very stunned Cooper's hawk!
I ran into the house and grabbed Pamela who has an entire book dedicated to hawks. Immediately, she exclaimed, "A hawk!" She has already decided to write her own nature's children story about the hawk that hit our window. David and I took a couple of pictures and video before the hawk flew away and landed in our neighbor's tree. Imagine that . . . two birds hit our house on the same, cold, windy, bone-chilling day!
You must be living in another hemisphere if you have no idea of the extreme cold everyone is facing right now! This morning Steve noticed the bird bath had turned into a skating rink. He heard the little chipping sparrows going "tink tink" as they tried to break through the ice. He heated up some water and a few minutes later noticed how much they appreciated his kindness.
Later in the morning, I filled the bath with hot water twice, and God rewarded me in such a delightful way. I gazed out the kitchen door window and spied something I had never seen before: a gorgeous blue bird with a robust red breast with a glorious green and yellow splash behind its neck. I flew to my Carolina bird book and discovered it was the very reclusive painted bunting. People introduced them to America as caged pets, and those released adapted well. Their numbers have declined since 1965 due to the trapping business in Mexico.
My neighbor who has lived here all her life has never seen a bunting and according to the range map, we are not in the zone for a wintering bunting. Even the colorful male buntings are hard to spot because they prefer to hide in thickets, and you are lucky to pick out its song. The poor guy must have been desparate for food and water to expose himself like that!
I grabbed the camera and took a couple of photos through the window to prove that I really did see a painted bunting. I yelled up the stairs so excitedly that David thought he was in trouble! Both kids came to the door and were amazed. We called Steve, and Pamela excitedly told him, "It's so beautiful. I see a colorful bird!" After we hung up the phone, I tried to get a couple of pictures from the porch, sneaking through a hidden door to the back porch, but the shy bunting skittered off before I could do anything. I even saw its reflection from the dining room window but was not quick enough to snap a shot.
I was determined to capture some video, so I put my handicam on the back porch, started recording, and took a shower. And, yes, while you might have a hard time seeing it, the bird enjoying our birdseed is, indeed, a painted bunting! I went through all thirty minutes of my recording and what follows are the highlights of our little flock, mostly old familiar friends, feeding on the coldest day of the year . . . so far!
Male Painted Bunting
Mr. Bunting shows up below the feeder about 20 seconds into the clip. A few seconds later, he lands on the feeder. You mainly see his red chest and blue head. When he turns to the left, you can see a bit of green on the back of his neck. He is eating up millet seed with gusto! (On my computer, I put the video on full screen so I could make out the colors, albeit blurry.)
Male Painted Bunting and a Loud Thwack
I ended up with a total of four minutes showing the bunting eating. In this video, he shifts to the other side, and you can see the green on the back of his head. The wind picks up and startles him. He flies off and that loud thwack is him hitting the siding of our house! He did fly away, so I hope he is okay now!
Lone Carolina Chickadee
Chipping Sparrow Flock
Cardinal Joins the Chipping Sparrows
If you think that this was plenty of excitement for one day, then you are dead wrong! The cold weather must bring out extremely desparate behavior in birds, and my next post is even more shocking!
We live in a MESSIER world! Today I learned that bleaching your hose turns them the color of a pumpkin. I guess I can save them for Halloween because orange is not my color! In early December, my Dell laptop kept unseating its hard drive, even when we gingerly treated it like a desktop. I grew so tired of dealing with it, I gave it the silent treatment for a month before finally sending it off the Dell spa in Houston, where I hope they will teach it to be in a better mood. And, I keep wondering what is more resilient in a MESSIER world, a Mac or a PC?
MESSIER stands for Multiple, Ever-changing, Simultaneous, Surprising, Imperfect, Emotional and Relative in lingua RDI (NOTE: scroll down to Clip #205 and watch the video once you register, which is free.) All of us have to learn to fly by the seat of our pants when dealing with inevitable and ever-changing problems. RDI, which is based upon a guided participation model of parenting, teaches parents resiliency so that they can guide their children in learning that trait. Last weekend, my consultant brainstormed with her local families at a meeting and they came up with a list of qualities that describe a good guide. First on the list was resilient:
Resilient: They know that there is no specific number of exposures to the concept that they are teaching that will determine competency in their apprentice. Some concepts will come quickly and easily, and others will require many more exposures than expected ("On the 10,000th try, there was light." –Thomas Edison). A good guide sticks with it and does not give up.
Last week, we experienced two examples of Pamela, Steve, and I learning to be resilient. On Saturday (January 3), we bought a new kitchen table and I envisioned how to work the experience into our whole-part thinking. While Pamela was playing on the computer and tuned out of what was happening in the kitchen, we took the old table to the curb. I set up everything and called Pamela. We walked to the door and looked outside. We identified the known and unknown part of the story (where the old table was and what might be in the kitchen).
Then, a calamity happened. At least, that is what Pamela would call it. While I was setting up the kitchen with the camera and turning on the lights, Pamela flipped on the television and noticed ETV was acting up. She had a nasty tantrum (about ten minutes), and I worked very hard to calm her. When she was collected enough to process it, we did some spontaneous whole-part thinking about the persnickety PBS station. I made sure to introduce the whole as "ETV gets better" because I thought it would be easier for her to handle "when?" as the unknown (not if!).
While I did get her back on track with the table known-unknown, she had lost the joy in it, was still worried about ETV, but managed to play along with me quite forelornly. When we got back to the office, she turned on the television and found out that all was well with ETV.
The Tables and ETV
When I posted earlier in the month about Baby Alive's gifts, little did I know that the Big Comfy Couch care package would generate so much excitement. Pamela requested the Loonette doll (the known part of the story) but had no idea about Loonette's doll Molly and the autograph (the unknown). Last Monday morning (January 5) when we recorded more whole-part thinking, I could tell Pamela was very excited so I thought it prudent to talk about that emotion and preview it a bit. We agreed to open the presents when Steve came to home that night. That night, Pamela's excitement was so intense, she could not take it! She could only tolerate peeking at one gift at a time and running from the room! We tried to talk to about it several times but she said, "In prison," which means she felt trapped. The next day, she managed to tell us that she would be able to discuss it in a week . . .
Baby Alive's Gifts
The most exciting moment for us was later that night. In the heat of the moment of intense joy, we told Pamela she was too excited but we never acted negatively or came down on her. Before she headed to bed, Pamela must have been thinking about what we were thinking about her. She must have felt bad for running off so much. Why? Pamela told us, "I'm not bad. Excited, not bad." Steve smiled and said that he loved her and gave her a big hug and kiss. I smiled and reassured her that I was proud because it is very hard to control excitement.
We have come full circle with Pamela in her intense reactions over presents. When she was six months old, we bought a nifty rattle for her. Steve pulled it out of the box, and Pamela freaked out! She cried and cried like he was handling a viper. He promptly put the rattle away. We pulled it out for her a month later, and she was better able to handle her excitement long enough to play with the toy.
P.S. We have patiently waited a week. While we have observed Pamela sneaking peeks at her gifts, she is still to excited to pull them out of the boxes!
I talked to my consultant about an issue that we would like to address, and I thought it might be a separate objective from the "I don't know" work we have been doing. Basically, Pamela half-hears a conversation on the phone or from another room and then yells loudly "You're not sick!" if she hears the word "cold." It does not matter whether the person said, "I feel cold" or "the weather is cold" or "Billy Bob got over his cold." She has certain trigger words and, when she hears them, she overreacts in a high-pitched mini-rant. After my consultant gathered together more details, she helped me see that this issue fits in perfectly with our "I don't know" work. Only, I didn't know it! LOL!
Up until now, we were working on helping Pamela feel comfortable with times in which she feels uncertain. Now, we are taking it to another level: sometimes, we only hear part of a story and, instead of overreacting, we can choose a different option: read the faces of other people to see if they are calm, reflect on past experiences, wait and listen for more information, wait and ask a question, etc. If she learns to do this, she might recognize that hearing the word "cold" is only part of the story and she might pause and reflect before going into red alert.
When I begin thinking about how to teach this, I realized it is not much different from the "whole-part" thinking we do for addition and subtraction word problems in our math curriculum, Making Math Meaningful. The key is to find neutral situations that are not triggers for red alert and to slow down the moment around which we discuss whole-part thinking. The video of our shopping trip will make this much clearer. Pamela knew what was on her list and how much money she had. She did not know what was on my shopping list nor how much money I planned to spend.
A couple of things on the video caught my attention. Pamela has a hard time focusing on my nonverbals in an overstimulating environment like Walmart! She and I normally walk rapidly through the store, but she slowed down very nicely behind a woman taking her sweet time. Pamela referenced me when she was not quite sure of what to do during checkout. (And, don't you love how well she does at checkout!)
Happy Year of the Ox, Common Year Starting on Thursday (what Pamela calls today)!
I went to bed last night praying about the food fight between Time Warner Cable and Viacom. Yes, praying! Can you imagine how early in the morning Pamela would have woken us up if Noggin and Nickelodeon were not on the air? I came downstairs at about eight in the morning and spotted her happily watching Blues Clues. She had no idea of the bullet we all dodged. Ignorance is truly bliss. I smiled and told her, "Pamela, prayer works!" She had no clue about what I was saying, and I gladly left her in ignorance . . .
Today, I saw Pamela playing with a white handkerchief. In this photograph, she had wrapped up some plastic toys in it and shook it to hear the sound. The video below shows the other things she did with it, including pretending to be a blind person who was quickly healed.
This week, several things happened that have confirmed Pamela on making progress through RDI.
Two elementary-school aged boys hang out at our house whenever they visit their grandmother. Today, they suddenly made comments about Pamela out of the blue:
"Miss Tammy. Pamela's not as shy as she was."
"Yeah, she's more friendly now."
"She never talked to us before, but now she does."
Last night, we hung out at my parent's house. A couple there had not seen Pamela since last February. After Pamela and Steve went home (they are the early birds in the family), the wife told me that she could see definite progress in how Pamela related to us.
Two days ago, my neighbors and I fell into a conversation. Pamela came up to me to ask where Steve was (he was making his visitation rounds in the neighborhood). During the course of this conversation, Pamela did things like pay attention to my face, shift attention from me to the neighbors when they spoke, nodded and pointed, followed my eye gaze and point, hugged them good-bye, etc. They were very impressed by everything Pamela was able to do spontaneously without an adult prompting her.
Lately, we are seeing things that make me think of a three-year-old:
Pamela never went through the "why" phase of development. I have been waiting for sixteen years to hear questions like "why" and "how come"! When I ask her why, I crack up when she says, "Because I said so!" While most parents are annoyed by this, especially getting questioned after telling a child "no", I feel like cracking open a bottle of champagne every time I hear those magical words . . .
Pamela wants to share things with us. It is not enough to discover something (like magic) or be healed from blindness, she has to share it with us. Even if I am in another room, she will find me and say, "I did it." And, many times when I ask what she did, Pamela is able to explain it to me . . . more champagne moments (and I bet I drink less than a bottle of any form of alcohol a year).
Pamela is much more able to have impromptu, spontaneous conversations without me acting as a translator. Often, I can step back and let her do what she knows to do with minimal explanation.
Pamela thinks of her babies as members of the family. The only gifts she requested for herself were presents for her baby: a Loonette doll (from The Big Comfy Couch) for Baby Alive and a Duplo Thomas Starter Set for Baby David. Pamela sprung this on me before Christmas but the doll is hard to snag and I finally won an auction right before Christimas. The Duplo set is out of stock and will not arrive for a few weeks. Pamela was delighted that we ordered them and is patiently waiting for the surprises for her babies to arrive in the mail!
I am sure many parents of autism spectrum children enjoy the unusual ways our children express themselves. I thought it might be fun to share some of Pamela's aut-isms and feel free to include the favorites of your child in the coments.
moccashoe for moccasin
towel robe for bathrobe
white cream for mayonnaise
binoculators which rhymes with elevator and escalator
Her newest word is thriller hole, the hole in the porch created by a knothole that fell out. She called it that because she finds it scary wondering what is in it.
And what lurks beneath our thriller hole? Take a peek . .
My friend (both cyber and skin) Jamberry talked about making a GF/CF banana pudding by substituting GF/CF animal crackers for the wafers. As we were invited to a neighborhood Christmas party and one of the neighbors is gluten-free too, I decided to give it a shot! I went through all my cookbooks (it took about five minutes LOL) and found a recipe suitable for altering (i.e., it did not include instant pudding as an ingredient).
Directions:
Mix first four ingredients with a whisk until smooth. Cook in a double boiler, stirring constantly, until it thickens. Remove from heat; add butter and vanilla extract and stir some more until the buttery sticks melt. Layer a 9x13x2 dish with animal cookies and sliced bananas. Pour the hot pudding over the layers. Beat the egg whites and remaining sugar until it forms peaks. Put on top of the banana pudding and brown under the broiler. Chill for several hours.
BEFORE the Party:
AFTER the Party:
Pamela loved it! My gluten-free neighbor loved it! Obviously, the partygoers that were not counting calories loved it. I think it passed the Granny test!
We had a lovely moment of experience sharing today. David and I were at the kitchen table, slaving away at school work. Pamela was sitting on the floor near a vent through which some deliciously warm air was blowing. She announced excitedly, "Magic! I'm doing a magic trick."
Our heads were so deeply buried in the books, we gave her one of those lackluster "uh-huh" responses. But, that was not good enough to please the great Pamdini, she repeated more loudly, "Look!!! It's magic." After I saw her clever trick, I grabbed the camera to film it for posterity. What I loved most about this interaction was that Pamela wanted to share her discovery of magic with us. She was not satisfied until we shared the experience with her.
Before I get into my post, I wanted to share a really thoughtful post about why one mother chose to homeschool her child with autism. I have been connecting to homeschoolers in cyberspace for 14 years. I have heard many, many horror stories such as children being tied to chairs, put in seclusion rooms (but not this heartbreaking), and having their mouths shut with duct tape. Diet violations. Dehumanizing treatment. Bullying. Physical abuse. Sadly even sexual abuse.
But, not everyone leaves the school system for bad reasons. We left because we thought we had a better idea of what Pamela needed. I did not think her teachers did anything bad, but rather they could not do what I thought to be absolutely best for her. Penny wrote a very eloquent post that I could not have written in my early days of homeschooling, and I heartily agree with what she expressed.
I can see signs of our work on uncertainty spilling out into other areas of life. Earlier in the week, Pamela and I spent the day wondering what was in some packages that arrived. She did not bother much at all about opening them right away, which is a good thing. One little thing I love about this clip is how well Pamela is picking up on subtle nonverbal communication. When I was talking, she started watching television through her "binoculators". Rather than verbally prompt her like an ABA automaton, I moved in closer to get between her and the television. She got the message and responded beautifully!
Today, I had to share some bad news for Pamela. I know this sounds mind boggling, but last Friday, Steve came home from a five-day business trip to Santiago, Chile. And, on Monday, he turned around and flew back for another five-day trip. That is 20,000 miles in two weeks! Steve told me this morning that he would not be coming home until Saturday, so I had the "fun" job of breaking the news to Pamela.
One of the major focuses of RDI is social referencing. Our work on uncertainty is a form of social referencing because Pamela is learning by watching my face, tone, and demeanor, that not knowing is okay. "We'll live" when things are uncertain. Rather than melting down, she can pay attention to my reaction and, if I am calm and neutral, then there may not be any reason for her to flip out. Page 12 of Solving the Relationship Puzzle says,
By the end of the fourth month, the typical infant has learned that the soothing voice tones and facial expressions of familiar adults can serve as a reference point, bringing instant emotional relief, even when not being held or physically comforted. Faced with confusing or ambiguous situations, it becomes second nature for babies to respond to their increased anxiety by gazing at a parent's face. If their facial expressions are calm and positive, this produces a rapid reduction in the child's distress, Alternatively if the parent's facial expression appears anxious or it is blocked from view, the child's distress will rapidly escalate. This process, called Social Referencing, plays a crucial role in the further development of Experience Sharing. Through Social Referencing, the infant gains security and confidence in interacting with his world. Once it has been learned, parents can begin more actively introducing novelty and variety into the child's life. They know that, even as they make the inevitable errors in providing too much or too powerful stimulation, the infant will be able to easily recover, through gazing at Mom or Dad and using their calm and happy emotional reassurance as a reference point for his own emotional state.
In the following clip, you can see Pamela's mild meltdown. Mild because I have seen her cry for five or ten minutes over unexpected changes in Steve's schedule. About forty seconds into the clip, Pamela begins to reference my calm and neutral reaction and you can see the "instant emotional relief" she felt by paying attention to me.
Tomorrow, we will have even more practice because the hot water heater stopped working today (and thankfully, my dad, Handyman Howard, lives across the street) and I have two toilets acting up. But, first, I need to practice my own calm and reassuring demeanor (instead of primal scream in a fetal position). I guess that is what happens when you choose to live in a house that is older than Steve and my age combined! (I'll let you do the math . . .)
Autism Remediation for Our Children is an email list for people interested in remediating autism from the perspective of Relationship Development Intervention (RDI), who might not be able to afford a certified consultant, who are building up confidence to pay for one, who have had one and feel they can fly solo, who are consultants, or who have one and wish to share what they have learned. In short, a mixed bag!
From time to time, someone posts great links to articles or the work of other professionals that dovetail nicely with guided participation (which is the model RDI uses). A recent post spotlighted the ideas of Dr. James McDonald, founder of Communicating Partners, who focuses on relationship over mechanics in his blog.
One post answers the chicken or the egg question, "Which comes first cognitive learning or social learning?" If you really think hard about it, the answer is obvious. Because most autistic children are static thinkers and spot patterns quickly, early cognitive learning such as colors and numbers are easy for them to master. So easy that we ought not to spend any time on them at all! Pamela taught herself to sight read by figuring out how to much videocassette tapes (even pictureless ones) to their boxes! Since static learning comes so easily to them, I believe it is counterproductive to develop that part of the brain even more. Imagine a tree in which some branches are completely lush, full, and heavily laden with fruit while other branches are nothing but sticks. Pamela's branches for patterns, numbers, and static bits of knowledge is the former, but her ability to relate to people is like the latter.
In fact it is now evident that a child will learn more of what he needs to be included in the social world from frequent daily interactions spontaneously than he will from intensive drilling on facts and skills for school. Making a child a successful student does not make him less autistic in real life and less isolated from society. Early and intensive social relationships are needed for that.
I especially love his point that "Treatment is no longer limited to trained and paid persons, but is available to anyone interacting daily with the child." I have watched situations unfold between Pamela and cashiers, kindred spirits who instinctively know how to slow down for Pamela, my random dad and son who both create lots of uncertainty, my patient German mother who knows how hard it is to learn a second language, Steve's doting parents who think Pamela is smashing and love to see what she will do next, her loving aunts who think nothing wrong about Pamela toting around her babies (Baby Alive and Baby David), etc. Often, she applies the discoveries she learns from me in situations with other people. They unwittingly work on our objectives without even knowing that what they are doing is vital!
I used to be very skeptical about what social milestones Pamela might be able to develop since she is nearly twenty years old. Based on what I have seen her learn in the past two years, I completely agree with Dr. MacDonald's assertion that, "contrary to the belief and practice of many, most children diagnosed on the autism spectrum can become much more social and genuinely communicative than they are." As you know we have been working very hard on helping Pamela to feel okay about uncertain situations. The following clip demonstrates two very exciting discoveries Pamela is making (1) we can feel comfortable about not knowing exactly when Steve (her dad) will return from a long trip and (2) we do not have to be upset about broken things (Opa's truck and the radio).
Last week, the radio station really did go out the day we had a tornado watch and Pamela cried and cried for about five minutes. Anyone who has watched an autistic person meltdown over broken things knows how heartbreaking it is to see these very real tears. The cool thing is that I did not spend the week getting Pamela used to walking in the kitchen with the radio on static. Instead, we practiced Pamela seeing my calm, neutral face when we were in the middle of uncertainty and Pamela knowing that, as long as I appear calm, then things were going to be okay in the end.
I will close with another lovely conversation--and Dr. MacDonald wrote a neat post on that topic, too. Steve was out gassing up the cars (an enjoyable task now that the price of gas has dropped).
Pamela asked where dad was. I told her, "I don't know!"
She said, "I don't know!"
Then she asked, "Is it gas?"
I just smiled and shrugged my shoulders and said, "It's okay."
I finally got my act together with uncertainty. Here are two recent clips of our work on uncertainty in which I get it RIGHT. The first one was a quick blurp I uploaded to the consultant as soon as I got off the phone to make sure I was on the right track.
The second one shows the culmination of what we have been doing after one week of steady explorations of uncertainty. Steve left for Chile yesterday. Whenever he heads south, people invariably email or call him and beg him to pick up the latest gadgets and toys. Sometimes, he is finds himself carrying more stuff than necessities (clothes, toiletries, etc.). On this trip, he dedicated a small carry-on bag to things for other people. Unfortunately, he had to be at work by 8 o'clock for an important meeting and three UPS deliveries would not be arriving until later in the morning. That meant the kids and I met Steve at the airport (a 2.5 hour round trip for us). Fortunately, I needed video and the trip gave us many ways to explore uncertainty!
My consultant and I agree Pamela is ready for the next level. We are going to skip a step that Pamela can already do (solving a problem or finding out when she realizes she does not know). Our new level is when I know something, but Pamela does not know. I am transferring to her the responsibility of her telling me when she does not know. This may sound obvious to a neurotypical person, but we need to make sure that Pamela recognizes that she does not know things that other people might know. At first, we thought I might have to scaffold this discovery by stopping and gaze shifting between something she does not know and her face. Pamela caught on IMMEDIATELY and she took my breath away. There are times in the video clip below in which I did scaffold with a declarative comment like, "I bet you don't know where we are going."
Today, we did have a moment of uncertainty in which Pamela was unhappy and did NOT reference me at all. The kitchen radio cut out for a few minutes; and, no matter how hard I tried to let her know that I did not know when the radio would be back on air and smiled, she was too upset to feel reassured. Hopefully, some day, our work on uncertainty will help her deal with situations like this better.
We celebrated Steve's forty-something-eth birthday on Friday, and, since he prefers semi-healthy treats, I baked a fruit dessert in lieu of cake and frosting. Between missing ingredients and stripping it of gluten and casein, I revised a recipe from a church cookbook in a major way. If you have a sweet tooth, you may want to add up to a cup of sugar to the filling. It must have passed the taste test, for it vanished in less than 24 hours!
Filling:
1 21-ounce can cherry pie filling
1 20-ounce can crushed pineapple
1 15-ounce can peaches (lite syrup)
1 15-ounce can pears (lite syrup)
1/3 cup tapioca
2 cups fruit juice (drained from fruit)
1/2 teaspoon vanilla extract
Combine sugar and tapioca with liquid. Let stand for five minutes. Cook and stir constantly until thickened. Add the remaining filling ingredients, dicing any that need it.
In a separate bowl, cream brown sugar and buttery sticks. Beat in the rest of the crust ingredients. Press 2/3 of the mixture in a 10 x 13 inch pan. Spoon in fruit filling.
Topping:
1 cup chopped pecans
1 cup coconut
Mix the rest of the crust mixture with the nuts and coconut. Crumble over the fruit filling.
Bake at 350 degrees for 50 minutes. If the topping gets too brown, cover the dish with aluminum foil.
Changing my parenting style is so difficult and brain-numbing. The latest twist is to say those dreaded words. What dreaded words, you ask? Well, back in the summer of 1981, the very first thing I learned at the boat school was the five basic responses of the plebe. There are only five ways we could respond and saying the wrong thing could cause your squad leader to yell at you at the top of his lungs with about one inch between his nose and yours. The five basic responses were "Yes, sir!" "No, sir!" "Aye-aye, sir!" The answer or "I'll find out, sir!" It took quite a bit of yelling and screaming in my face for it to be drilled into my head to say "I'll find out, sir!" instead of what most people say when they don't know. Yes, those dreaded words, "I don't know, sir!"
What does this have to do with parenting? My RDI consultant has wisely observed that Pamela has a difficult time living with uncertainty. And, when I think about it, her worst crying jags (short, but intense) are caused by true uncertainty. For example, we do not know how long it will take for power to come back on when it is out. We do not know when the cable box will come back on if it dies. We do not know when Steve will come home if his flight is canceled. We do not know how long a traffic jam will last (especially if we are late for a very important date). This kind of uncertainty does cause Pamela to become unglued because there is no answer and know predicting when we will have an answer.
While what we were doing was helping, I did not have it quite nailed. I was just letting uncertainty flow into little guessing games, which misses the point of living with uncertainty. The following two clips show how I have been missing the boat because knowing that there is an answer if you wait long enough sweeps away uncertainty in Pamela's mind.
Keep in mind--what we are doing was sweet and fun, but we were NOT working on uncertainty, which was the objective! The focus is that we don't know and we can live with not knowing. The key is to stop and freeze that moment of uncertainty in time so that Pamela has time to process that I am perfectly fine about not knowing. She needs space around the "I don't know" moment so that it will register as being a neutral moment for me (and I hope she will reference that and decide it is neutral for her, too). We do not need to play guessing games or solve the problem because, in our messy world, that is not always possible. Sometimes, there is no answer or solution.
Once Pamela relaxes and accepts being uncertain, we can resume the action and go back to what we were doing, which may very well include solving the problem or finding out the answer or living with uncertainty even longer! The problem with this is that it will be hard to record these moments because moments of true uncertainty happen unannounced. You almost need TiVo in your eyeballs!
In the past day, I have already seen how hard this is for Pamela. For example, Pamela loves commenting on which car Steve takes (one car does not have a radio and she loves her music). The first time she asked me what car he was taking I did the slow, neutral, calm "I don't know which car Dad is taking" and started World War III! She kept rotating between the three car colors (red, gray, or black). I must have repeated the "I don't know" mantra about eight times. She was not happy and fussed and blustered at me. She gave up. A minute later, she ran to the window to see three cars still there.
Later, I tried the IDK car mantra again. I was unable to prevent her from running to the window to check to see Steve switching around cars. Later, Steve was busy switching cars around. I tried the IDK car thing, and Pamela got so frustrated she used her power words. After guessing each car several times, she finally said, "Failed. Game over!" Aha! I thought she thinks it is a game in which there has to be an answer. Not knowing is not an option in this game. So, I said to her, "This is not a game. I don't know which car Dad is taking. It's okay." FINALLY, she got it. Pamela relaxed, nodded, and smiled back, then went back to eating!
Later in the day, we were coming back from picking up Pamela's dinner. We always do that on my choir night. As we turned onto our street, we saw Steve drive off. Pamela asked, "Where's Dad going?" I stopped the car (we live on a dead street) and said, "I don't know" and smiled. She smiled back and let it go! NORMALLY, she would have said something like, "Daddy's getting gas" which is what he usually does when the price of gas is low. After we got home, I walked into the office/TV room and said, "I don't know where Dad went." I was relaxed and neutral. Pamela nodded and smiled back!
That does not mean she has mastered this concept in a day. The true test will be the next time something unpredictable happens for which we have no answer.
The past two Christmas seasons have been so hectic, we did not have time for advent. This year, we decided to do it even if it meant sitting around the wreath and singing on a Tuesday night. Sure enough, by the time David got home from youth group last night, Pamela was already in bed and Steve was fading fast.
So, we celebrated the first Sunday of advent on Monday! We lit one candle and cycled around the table, letting each person pick a favorite song. I can tell how much Pamela has changed because, this year, she gave me face to face contact as we sang several carols. She has a very light, sweet soprano voice and decent timing, but the lyrics definitely need more work!
Steve never sings because he has about one note in his repetoirie. This is the first year David opted not to sing, in spite of the fact that he can carry a tune and has a soft baritone voice. I did not act disappointed and was later rewarded for my patience. After we were finished with the pumpkin pie for our advent treat, David ran upstairs to his bedroom and spent about an hour practicing Christmas carols on his recorder so that he can accompany us next week!
Sixteen years old and David is still suspectible to being bitten by the advent bug . . .
Steve does everything fast . . . he runs five miles most days . . . he zips through his check-list every weekend . . . he does mental arithmetic rather than use Excel. I can never decide if he is Ricochette Rabbit or Speedy Gonzales! One of the most difficult things about RDI for him is the S word: SLOW! Our consultant came up with a perfect analogy: our consultant is NOT a runner and, if Steve wanted to take her running, he would have to match her pace because she could not match his. Actually, the same is true for me! Steve would definitely have to slow down for me if I ever lost all my marbles and joined him for a jog. 
