Aut-Isms

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 . .

Good Enough for Granny GF/CF Banana Pudding

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).

Ingredients:
6 egg yolks
2 cans coconut milk
2 tablespoons corn starch
1/2 cup sugar
2 tablespoons buttery sticks
1 teaspoon vanilla extract
6 small bananas
1 9-ounce box gluten-free vanilla animal cookies
6 egg whites
4 tablespoons sugar

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!

The Great Pamdini!

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.

Handling Bad News

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 . . .)

We'll Live!

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.

Like RDI, Communicating Partners works on social learning first. Dr. MacDonald writes,

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."

She nodded and told me, "We'll live."

Yes, indeed, Pamela! We'll live.

Wordless Wednesday: GF/CF Fudgesicles (Click for Recipe Link)

Uncertainty: Advancing to a New Level

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.

GF/CF Fruit Dessert

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.

Crust:
1 cup brown sugar
3/4 cup buttery sticks
1/2 teaspoon vanilla
1 cup gluten-free oats
1 cup gluten-free cornflake crumbs
2 cups all-purpose gluten-free baking flour

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.

Undoing 27 Years of Military Training

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.

RIP: The Sacred Hour 4/6/2007 - 11/13/2008 (Click Picture for Background)

Never Too Old for Advent!

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 . . .