Tribe of 3 Feisty Kids

I’m blogging here:

http://tribeof3feistykids.blogspot.com

and anyone else interested in our first faltering steps it getting involved in RDI (or in really dull home videos)

You wrote: Did you order your camera yet? I normally ask parents to submit a 5-10 minute clip of each parent working with their child on a guided participation activity prior to the RDA. I helps to complement my analysis. If you get your camera, do you think you would have time to do something like that?

I hope this works O.K. I e-mailed these clips to myself first, to make sure it worked — and it seems to.

The audio quality is just so-so (perhaps because of all the background noise) and my cinematography leaves much to be desired. It is also hard to see their faces. (If I had zoomed in close enough to see their facial expressions, you wouldn’t have been able to see anything else). I hope to get better at this as I go along.

The only things that stand out for me in these clips, from an RDI perspective, was that Sarah *was* accepting coaching from her dad and she did “reference” him (I think that’s the right term) a *few* times by looking at his face when she wasn’t sure what to do. I thought that seemed like a good sign. The clips also show that she has trouble with dynamic thinking tasks (like using math and measurements “in real life”) I look forward to your reactions and the RDA results.

I tried having my son videotape Sarah and me while she was helping me in the grocery store today. But James is a force of nature (running around and whirling like a dervish — that’s my boy :-D) and I didn’t get any usable footage. I’ll try to get something for you by the end of the week.

Building a Treehouse

Part 1

Part 2

Part 3

A while ago I posted some course descriptions describing the “high school level” work S. has done so far and making it look all official-like.

They are meant to be used for college admissions someday, though if she decides to go back to PS, I am also thinking this might be useful information for her high school (they won’t look at it is being official, but they’ll probably want to see it).

I’ve revised them a bit and reposted them here:

Composition

Creative Writing

Pre-Algebra A

Psychology Through Literature

Dystopian Lit

History WWI-WWII

There is a copy of the transcript I wrote in the previous post.

I started a high school transcript for Sarah. If she decides to go back to public school, they won’t accept a homespun transcript, but I think it would be helpful information. If she continues home schooling, it probably will eventually be accepted by colleges. Weirdly enough, all this nit picky home schooling stuff is a good diversion for me. It slows down the thoughts in my brain that make me crazy. Just a bit.

A few updates — my incredibly generous Dad gave me money for our home school. We’ve been getting some cool stuff. James just got a new keyboard — 77 keys, a pedal, a stand and loads of bells and whistles.. He’s getting pretty serious about piano lessons, and the small keyboard he’s been using is no longer sufficient to practice on. I also used some of the money to order a video recorder (called a “flip cam”) and a tripod to use for the RDI program.

We have our first meeting, to start the RDA, next weekend! I am excited and scared half out of my wits about the new direction we’re taking. RDI seems philosophically and psychologically sound to me. But I distrust myself to be able to make this work in our lives. I’m putting a lot of hope in this. I hope I have the wisdom and consistency to make it work.

Research-based theoretical model for RDI Dr. G. spent a lot of time explaining that the development of autism is a process. You aren’t just “born autistic” per se. You have certain neurological vulnerabilities which lead to the development of autism.

I.  Threshold of neurological vulnerability — here we get into etiology which is something I don’t want to talk about. It reminds me of all my angst thinking I had done something to harm S. and her difficulties were my fault. Won’t go there. Suffice it to say there are MANY factors in autism.

II. Breakdown of the dynamic feedback system

A. There is a breakdown of the referencing process the way it’s supposed to happen (a disruption of dynamic communication.) The child does not look at the caregiver’s reactions to see whether things are safe. To explain this, Gutstein referred to a “visual cliff” study described here.

B. Breakdown of trust and resilience — The baby needs that referencing relationship to develop courage to try new things and to build trust with the parent. Without the referencing, trust and resilience don’t fully develop.

What happens when resilience is lost? Gutstein referred to the work of Dr. Edward Tronick, who was not specifically referring to autism.

1. Because of neurological vulnerability (for instance, a baby gets sensory overload very easily) he learns to disconnect from his environment.

2. He becomes fearful, and avoiding bad feelings (such as sensory overload) becomes his primary goal.

3. He loses trust in himself and his caregiver.

4. He develops indiscriminate defenses. Because he is fearful of uncertainty, and uncertainty is always there, he uses these defenses all the time. In autism, these defenses include perseveration, rigidity, and “stimming.”

C. The child reaches a neurological tipping point

III. Loss of guided participation and loss of opportunities for dynamic development

IV. Failure to develop dynamic intelligence

V. Neural Underconnectivity

**RDI is about restoring opportunities for guided participation.

The term “Guided Participation” was coined by Barbara Rogoff, who studied how parents in many cultures guide their children in cognitive and social development. Social Learning is necessary for the brain to develop in a dynamic manner. According to Rogoff, “Children’s cognitive development is an apprenticeship. It occurs through guided participation in a social activity with companions who support and stretch children’s understanding of and skill in using the tools of their culture.” In this context, cognitive development includes thinking, problem solving, and negotiating with the world, not accumulating skills and knowledge.

Rogoff noted than many “third world” countries tend to do guided participation with children better than we do. Also, the guided participation relationship can be interrupted too early by formal schooling.

I was reminded of Frank Smith (The Book of Learning and Forgetting) and also John Taylor Gatto and John Holt. REAL learning (the capacity for dynamic problem solving, not just the accumulation of knowledge and facts), usually doesn’t take place in the classroom. It happens among the child’s significant others — members of the family and community — who walk beside the child and guide him.

The Guided Participation Relationship Requires:

1. A functioning dialogue between the child and caregivers. The child must be a willing apprentice and there must be a functioning emotional dialogue so the parent knows when to challenge the child and how much is too much. The guide needs reliable feedback from the child. Does my child need more support for the challenge? Is she not ready? Should I back down?

2. Trust for and identification with the parent. There must be a history of successful co-participation
with the parent. The child must trust the parent, so if he gets uncertain or confused he can use the adult as a reference point.

3. Resilience - The child must develop the ability to tolerate failure and keep trying.

Often we parents rush to involve our kiddos on the autism spectrum in too many therapies, not wanting to miss something crucial. (Been there, done that) Often this makes things worse. There are too many people in the mix and too much chaos, so a strong guided participation relationship between parent and child is less likely to develop. I think maybe in our society, we are persuaded to over-rely on “experts” and professional therapists and educators. (Yes, so says the former therapist. And the woman whose child has seen no less than 10 professionals. Let’s see … there have been three speech therapists, two OTs, one PT, two mental health therapists, a psychiatrist, a homeopath … and a partridge in a pear tree.) Of course, these professionals have their place, and they can be extremely helpful, even absolutely necessary. Especially for us, since our daughter has a dual diagnosis. Still, I think the point is worth pondering.

These things evolve in “typical” kids in the first few years of life.

1. SOCIAL REFERENCING — The child looks to the parent to see if something is safe. If she walks closer to the edge of a cliff, she looks at the parent’s face to see if the parent’s face is calm (it’s still safe) or anxious (back off). The child learns that she doesn’t have to solve every problem alone. You need to do this with a trusted adult before you internalize it and reference yourself. Self referencing happens too fast in autism. On one hand, an Aspergian child’s inclination to follow her own inner voice can be a tremendous strength. But too much self referencing tends to cause a lot of problems in relationships and judgment.

2. SHARING PERSPECTIVES

3. REFERENCING — Use caregivers to support your own impressions safe? Not safe? New?

Gutstein noted that in “typical,” strong, healthy families, parents are really in sync with all their kids’ communication maybe 30% of the time. Just like happy couples REALLY resolve their problems about 30% of the time, and their relationships are successful and happy. This is real life. And we learn as much from the failures in communication as from the successes.

Lessons 6 & 7 — Quality of Life in ASDs/Limitations of Current Treatments

Byron Rourke wrote about Non-Verbal Learning Disabilities (NLD), characterized by a difficulty in handling novel situations. This is essentially the same thing Dr. Gutstein is discussing when he explores the difference between dynamic and static intelligence.

I was on an NLD support list with many adults with NLD. Many of them were extremely intelligent people who had done brilliantly in college and graduate school. However, they could not manage jobs in their chosen fields. They had a tremendous amount of knowledge and insight, but they could not apply what they knew in ambiguous, ever-changing “real life” situations. As a result, many of them had never moved out of their parents’ house.

Traditionally programs for people on the autism spectrum teach static skills. Study facial expressions and learn what each one means. Rehearse beginning and ending conversations. Say “please” and “thank you.” Look me in the eye. Some of these are useful skills, but they will not change a person’s life or enable her to cope with the “real world.” She needs dynamic abilities — coping with change and uncertainty and dealing with the “shades of gray” between the black and white.

High intelligence and verbal ability is not predictive of success in people on the autism spectrum. Also, autistic kids who are late talkers are no less likely to succeed than early talkers. In fact, most will learn on their own, without speech therapists, and will do as well, in the long run, as their more verbal counterparts.

Lesson 8 — Introduction to Guided Participation

Psychologists such as Barbara Rogoff have studied the way children throughout the world learn — through the guidance of their parents — the dynamic skills they need to succeed in life. The process is somewhat similar across all times and cultures. This is guided participation. “NT” folks tend to absorb this mentoring intuitively, and people “on the spectrum” need to learn it in a more slow, intentional way.

Guided Participation

I. Collaborative — You learn by doing things together rather than by being told.

II. You work on meaningful goals and authentic roles, not through games and gimmicks. The original RDI program offered sort of a cookbook of games and activities for teaching guided participation. Now they emphasize learning through things you do in “real life.” This is not a technique — we’re clarifying what we do as parents and doing it in a more mindful way.

III. Active & Participatory — You’re not looking for compliance or performance. You’re fostering dynamic thinking.

IV. Challenge Based – It has to be the right developmental time for the challenge. You’re working in the child’s zone of proximal development — skills that are a little bit beyond those he’s mastered.

V. Build Cognitive Bridges

VI. Balance Challenge and Support

A. Challenges

1. Structure Joint Attention — This is not a child led model. The parent chooses things toward which to focus the child’s attention. This is about directing attention not behavior.

2. Continual Variation — If is doesn’t change it’s static, not dynamic.

3. Being selectively responsive to the child.

4. Constructing appropriate challenges for the child.

5. Progressively having the child assume more responsibility

B. Support

1. Simplifying or eliminating non-essential parts

2. Adapting to limitations

3. Removing distractions

4. Slowing down

5. Deliberation and reflection

My dad (once a socialist philosopher, by the way) announced he’s becoming a flaming libertarian. O.K. — I am more of a moderate, but I have been reflecting on many things that pull me toward the libertarian camp. And I just read this. Does it scare you? It is scaring the crap out of me.

Home schoolers sometimes quip that it feels like the government thinks it owns our children. Maybe this is more literal than I thought.

After spending a day in Medical Genetics with Trishy, pondering the possibilities and limitations of genetic testing, and a lot of discussion of dystopian visions of the world with Sarah last semester … well … I have a lot more thoughts on this topic bouncing around in my head. Maybe later I will take the time to write them out.

Note: My husband, the police officer, has a very different take on this. He likes the idea of all newborns’ genetic information being banked. “It’s like fingerprints, only better.” I’m interested in hearing other people’s thoughts — on either side of the issue.

More later.

Thank you to the nine intrepid commenters who listened to the whining rant in my last post and offered affection and support. I appreciate your thoughts and your friendship. A LOT.

What’s happening today?

James is playing Mario Kart on the Gamecube. I have been trying to get him to stop pronouncing Grand Prix as “Grand Pricks” (somebody’s going to think he’s into some awfully obscene stuff). That darn William the Conqueror — thanks to him the French have really complicated our language.

He started doing some schoolwork today. We are reviewing multiplication facts. We did a treasure hunt (follow the flash cards to the prize) and played Mythmatical Battles. James is mostly self taught in terms of math concepts, but he needs a lot of practice with math facts so he can practice problem solving concepts smoothly. This fits my theory that he is a “right brained” learner. James also started his new grammar workbook (he requested a grammar workbook instead of the Charlotte Masonish gig, with copywork and such, or an unschoolish approach).

Trishy has been BEGGING for math lessons. She wants to do everything she’s seen the older kids do. We did a “treasure hunt” with flash cards practicing counting from 1-6. We also practiced counting from 1-6 with multi-colored bear counters. We sorted the bears by color and size and talked about the concepts of “bigger” and “smaller.” We worked on color patterns. She easily got the hang of a simple pattern (red bear - green bear - red bear - green bear) but didn’t understand a slightly more complex pattern (red bear - green bear - green bear - red bear - green bear — green bear).

She actually had a little more trouble with these concepts than I expected. I am not worried, but I am focusing on her budding cognitive skills in a more purposeful way since I learned there is about a 50/50 chance she’ll have a significant learning disability. We’ll continue playing with this stuff as long as it’s fun for her. If she gets bored or frustrated, then it’s not the right time for her to be doing it, or the activities are just wrong.

After Trishy finished her math lesson, James devised an activity to check and see how much she’d learned. I’m not sure what it was exactly, but it involved building a garage with blocks on the dry erase board, laying out a bunch of Hotwheels, and writing down numbers. He also applauded her loudly when she counted correctly. Little Man, you are SO cool.

Sarah has been sleeping most of the day. She started a new medication yesterday, and it is completely knocking her out. We will probably just have to wait it out until her body adjusts to the change.

Tuesday, she visited her counselor, C., who confronted the fact that Sarah is still resistant to CBT (cognitive behavioral therapy) for OCD. Sarah basically told C. off for “pushing” her and threatened to quit. Oy, oy, oy!

There are plenty of reasons for Sarah to be resistant. After having had a monster gnawing on your guts for nine years — well, it’s Hell but it’s your monster and you’re kind of used to him. Change is hard. CBT is hard. And when you’re in the throes of your illness in a really bad way (hence the need for a medication change) it’s hard to think straight, let alone do serious therapeutic work.

Another way to frame this problem — for those interested in RDI (Relationship Development Intervention) — is as an RDI pre-apprentice kind of thing. On an RDI list I sometimes visit, they talk a lot about a child’s readiness for the “master/apprentice” relationship as being a pre-requisite for all the RDI objectives, and a very difficult thing for our kids “on the spectrum.” The bottom line is this. There are a LOT of control issues that go along with Asperger’s. This is a kid who is NOT open to being told what to do — this has always been the case. And … oh yeah … there’s that little matter of her being a teenager. *LOL* To some extent, this is normal, of course. But kids with Asperger’s, autism, or Non Verbal Learning Disability really have trouble accepting guidance.

Along these lines, Sarah has always been resistant to anything beyond *supportive* counseling, and this is her first experience with a very directive therapist. (C. also has kind of an edgy style). Sarah may not be ready to accept direct coaching and direction from C. right now.

If RDI works, it will help Sarah rely on others in a healthy way, accept direction, and collaborate with others. This may pave the way to her being able to benefit from mental health therapy.

I am really liking the RDI training and the new ideas and perspectives it’s starting to kindle in my overly cluttered brain. I wish we had started this program when S. was MUCH younger, before adolescence and her worsening psychological state got into the mix. But we didn’t have a viable opportunity to work with a consultant until now. So I guess, all things considered, this is the perfect time. On my good days, I believe that God — or some cosmic order in the universe — tends to bring things into our lives at the right time. (And if we miss the boat, we’re given other opportunities. He knows we’re on a slippery learning curve). On my not-so-good days — when my faith is at low tide and I don’t frigging feel like being spiritual or philosophical — well, at least I can be pragmatic about it — right? At every stage, I reckon we did the best we could for Sarah with what we had and what we knew at the time. Or if we didn’t, it’s way too late to fret about it now.

On that note — for years, we parents have been told that if we didn’t get the right intervention for our “special needs” kids at the right time, it would be “too late.” The window of opportunity would close, and our kids would be condemned to live with their limitations. Dr. G., the RDI guy, emphasizes the fact that the whole “window of opportunity” mania is not supported by research. Guess what? The brain keeps growing and changing throughout life. Whaddya know?

Thank God Dr. G. cleared that up. We parents do not need THAT guilt on top of everything else.

I don’t really feel like blogging, but I thought it would be good to start getting things down. My moods are incredibly unpredictable. One minute I think I have it all together — just moving from one stepping stone to the next without falling in the water. Trying to focus on the good things … taking it as it comes. The next minute I feel like every fiber of me is unraveling, and I feel alone and isolated, with nobody to talk to about what’s really going on. I don’t have the energy to smile and make “small talk” on any level, and I don’t know who I can unload on about the “real” stuff. So I try to stay home as much as possible. Between therapist’s and doctors appointments and shopping trips. Hah!

Sunday, we celebrated Sarah’s 14th birthday. That was good! We all went to the theater, with my dad, and saw Get Smart. John cooked apple wraps and we had cake. Sarah got some serious cash for her birthday, along with some books and an MP3 player. The OCD actually took a break for a day. YAY!

Monday we took Trishy to the medical genetics department at UVA. Once again, we didn’t get a definitive diagnosis, but it was confirmed that she probably has neurofibromatosis. She isn’t showing any symptoms yet, and neither of her parents are known to have the disorder (of course, in half of cases it’s caused by a genetic mutation, anyway). On the other hand, she has a LOT of cafe au lait spots, and based on the number and pattern, the specialist doc thinks she has this disorder.

It is possible that there won’t be any effects at all.

It is also possible that there will be effects, the most likely being:

• vision problems (blindness is a possibility)
• learning disabilities (at one point, that would have scared the crap out of me. But — hey — that’s just amateur stuff to me now )
• seizures
• high blood pressure
• scoliosis

There is also a possibility of some really bad stuff — the tumors on her nerves could turn into cancer, she could develop severe deformities and brain damage due to malformations in the skull.

Or not. We won’t know until it happens or until she reaches adulthood with no problems. Except for annual exams (Can she still see all right? Is her spine still straight? Any seizures yet?) there’s nothing they can do.

So … wink at the sword of Damocles hanging over your head and get on with your life, eh?

In the midst of all this, the OCD monster is growing and getting out of control. There have been two awful breakdowns this week, many calls to Sarah’s pdoc, and a therapy appointment (in which S. refused to cooperate and basically told off her counselor). My dad was here for the last breakdown, and I think he got a real glimpse of OCD for the first time. He said:

“Wow. I’m way out of my depth.”

No shit … me too!

Everybody, my daughter most of all, is worn out after running this marathon for almost 9 years. We’re all unraveling.

Hoping to have a fun evening with my “babies” (if the anxiety/depression/OCD holds off) — I rented Spiderwick Chronicles and eating snacks.