back on track with Stage 4; well, sort of

So we had addressed our roadblocks and were ready to forge ahead with Stage 4. In no time at all, most of the objectives were looking pretty good, most of the time. But every once in awhile, something I tried with Jacob would totally throw him.

Here's an example of how this would happen: one day I pulled into the grocery store, and announced that we were going to shop the grocery list backwards (from the bottom up). Jacob burst into tears, insisting that we couldn't do it that way (I believe the exact words were "never, never, ever, never"). I was shocked with the intensity of the emotion, so I told him that it was OK, we'd shop the "usual" way this time, and NEXT time we'd try it backwards (thinking that maybe he just needed a little bit of warning about that big of a variation). But he insisted that we do it backwards, now that I said we were doing it that way, even tho he cried the entire time (and weren't we a pleasant spectacle, a screaming child and woman shopping against the flow of traffic....). It was as if my SAYING something was more important than him feeling strongly that we shouldn't. This scenario repeated over and over, and caused me to wonder what was at play.

It finally occured to me that that sort of "variation" was really a Stage 5 type "transformation", so of course he couldn't handle it, he hadn't even mastered Stage 4 yet. But that didn't explain why he then went on to insist on doing it the way I said, even tho it was very upsetting to him to do it that way.

We scheduled an RDA for Jacob to try to sort these things out, and in the process of speaking with our consultant, we had it figured out before we even went for the RDA -- yes, Jacob was close to Stage 4 mastery. But in the process of removing his inflexibility, we discovered that he no longer had any basis for making decisions. He used to just pick the "usual" way of doing something, or the "same" items. Now he just stared in blank confusion when faced with a choice, even a simple choice like whether to wear the green shirt or the red shirt that day. If I didn't offer MY perspective/suggestion, he was left with no ability to appraise a situation and make a decision. He was almost entirely lacking in self awareness -- not only did he not know what his preferences were, he just didn't have any. Nor any basis of how to form them.

So the answer to my previous quandry was that even though he wasn't happy with something that I suggested, it was extremely important to him that we stick with what I said. Because if I couldn't stick with my decision, it left him feeling ungrounded.

Our RDI program took a sudden turn away from Stage Objectives and focused instead on practicing making choices and building self-awareness.

sensory integration -- Jacob's at-home program

Under the direction of our OT, we've set up a Sensory Integration program for Jacob at home. Here's some of the components of that:

We do the Wilbarger DPPT (Deep Pressure and Propriocetive Technique -- formally known as the Wilbarger Brushing Protocol), which consists of "brushing" his arms, back, and legs with a surgical brush, followed by deep joint compressions on shoulders, elbows, wrists, fingers, hips, knees, ankles, toes, and chest. To find out more about this technique, click here for a helpful website. Initially you do the brushing/joint compressions every 90 minutes, then you back off on it. Up until recently, we were doing it three times a day with Jacob -- upon waking, 2 hours later, and at bedtime. We've recently scaled back to just upon waking. Jacob will ask to be brushed if we get distracted and don't get to it right away.

We also using an Airflow Horn Heirarchy set. Blowing on increasingly challenging whistles is good "heavy work" (which I'll talk more about in a minute), as well as working on lip and facial muscle positions needed for proper speech, and helping to expand the chest for proper air flow.

These two programs take about 10 minutes a day to implement. The rest of our program revolves around taking advantage of opportunities to do "heavy work" as they arise.

"Heavy Work" is work that requires the use of whole body muscles -- opening heavy doors (either pushing or pulling), pushing shopping carts or vacuum cleaners, pulling wagons, dragging beanbag chairs, pushing a wheelbarrow, blowing on whistles or bubble pipes, bouncing on a ball, jumping on a mattress, carrying heavy bags, carrying a weighted backpack: these are all examples of "heavy work". "Heavy Work" is very grounding to the sensory systems, so anything that requires challenge to Jacob's sensory system is followed by heavy work of some sort. (Walking like a crab, deep squats, bouncing, etc.)

Just as RDI became part of the way we live every day life, so too did Sensory Integration. I now see each activity as an opportunity to work on certain portions of Jacob's OT program. Piles of stone in the driveway and bales of hay covered in tarps (see photo) became a place to do heavy work (climbing up the pile, pulling Zoo Boy up, jumping off, running up and down the stone piles). Of course, Jacob has no idea this is "work" -- he's just playing and having a great time! That's the best part about a good Sensory Integration program -- the kids are healing their sensory systems while playing!

There is one more aspect to our program that will be implemented in the near future, and that's the listening program that I mentioned in yesterday's post. The CDs and headphones are pricey, but our OT is sold on it as a very beneficial thing (and I very much trust her), and it's easy to implement as the child rides in the car, you just strap on the ear phones and let them listen to a few tracks. I'm saving my pennies to buy the equiptment as a holiday present to myself, so hopefully we'll start using that on a daily basis as well right after the New Year. I'm sure I'll post more on it (and include some links) when we get going with it.

sensory integration program -- Jacob's therapy sessions

I wanted to talk a little about the types of activities that Jacob's OT does with him during his weekly sessions. But first an apology -- I don't have as good an understanding about Sensory Integration as I do about RDI, so a lot of this is just going to be my observations, there's not going to be a whole lot of "meat" to it. I'm not always sure exactly what part of his sensory system is being addressed by each activity, but our OT assures us that we are making progress in all areas (and I can see the results in his overall integration and regulation). Also, at the same time she's addressing his sensory issues, she's also addressing the skills he needs as a "student" -- pre-writing (strengthening his hands and freeing up his shoulder motions) and pre-reading (visual tracking) -- and his motor planning difficulties.

Each session starts with the astronaut board that I mentioned in yesterday's post. She starts with him sitting on the board, with his eyes closed. She spins him 10 times in each direction (stopping between directions to let him stop being dizzy), then has him follow a flashlight with his eyes. Then she does what she calls "jumping" -- she uses two flashlights held the width of her body apart and he has to shift his gaze to the flashlight that is lit. Then she repeats the entire activity with him lying on his side on the astronaut board, then again with him lying on his other side. (I have to tell you, just watching him spin makes me feel sick!! I've definitely got some vestibular issues!) After that, she does some reading/pre-reading excerices with him to work on visual tracking. She holds a piece of paper with numbers or letters or pictures on it, and he "reads" them across or down or whichever row she tells him to.

Next she does a fine-motor and visual scanning game with him. This usually involves him lying on his stomach on the astronaut board so that he can rotate himself, and she distributes items out around him (sometimes they are cards, sometimes beanbags, sometimes pictures, sometimes toys or pieces of toys). Then she sets the criteria -- he has to find the letters of the alphabet in order, or he has to match numbers or colors to a card she's holding up, or he has to find animal parts to assemble an animal. It's the same activity, but the specifics are different each week -- GREAT stage 4 stuff, even though she is not trained in RDI.

Next comes an obstacle course. Sometimes she has an obstacle course already set up for him (basically a string of activities that she wants him to do, and he visits each numbered activity and does it before moving on to the next -- looking for the next number incorporates that visual scanning). Sometimes he helps her set up the course as they go along (working on motor planning and making choices). The obstacle course is the framework she uses to get one activity to flow smoothly into the next. It's a highlight of Jacob's week, and he and Zoo Boy love to come up with their own obstacle courses at home and at playgrounds. The compenents of the course (the activities) vary each week, but have included:

Zip-line: Jacob "flies" across the room while holding onto a zip cord. His goal changes each week, at first it was just to get him strong enough for him to make it across the room. Then it was motor-planning -- getting him to drop and land on/in a target. The target's gotten taller as the weeks have passed, and now he must really lift his legs while he "flies" in order to get into it. To encourage his leg-lifting (which is working on his core strength), Zoo Boy and I shoot at him with pop guns as he flies by us, trying to hit him in the legs.

Hammock: Jacob lies inside stretchy pieces of fabric while his OT bounces him up and down or sways him back and forth, or both. This is one of the activities that she uses in conjunction with his listening therapy (special Sensory Integration CDs, listened to via a specially designed set of headphones -- honestly, I don't know much more than that). Jacob wears the headphones and listens to a track or two while his vestibular and proprioceptive systems are being stimulated.

Air Pillow: Jacob jumps off of a structure of some sort (that he either climbs up or jumps onto) into a big plastic pillow filled with air. His OT rocks him back and forth, or bounces the pillow up and down, or rolls him around on it. At first, Jacob wanted nothing to do with the air pillow. It's now become one of his favorite items.

Jumping: There's lots of jumping in this room. The favorite thing his OT uses is a big excercise ball held in place by some inner tubes. Jacob jumps up and down on the ball while counting. But there is also jumping on mattresses, crash pads, inner tubes, as well as jumping up onto and off of things.

Climbing: There is a climbing structure, from which Jacob either slides down or jumps off into crash pads or the air pillow. Sitting at the top of the structure, his OT often has him throw heavy beanbags at targets.

Swings: There are lots and lots of swings that are used. Sometimes he swings to and fro on a bolster swing, with a sword in one hand, spearing rings as he goes. Sometimes he swings back and forth on a platform swing, lying on his belly, while he "fishes" for magnets with a magnet-ended fishing pole. Sometimes he swings side to side while sitting on a hammock swing, throwing sticky balls at the wall, or bean bags at targets.

Top: There is a big red plastic top, big enough for kids to fit inside -- Jacob rocks himself around in a circle in it. Sort of hard to explain, actually....

Ball Pit: There is a big ball pit made of stacked-up inner tubes, with enough space and balls inside for a couple of kids to get in and get fully immersed in balls. The OT hides things inside the ball pit for Jacob to dig through the balls and find. Before getting in, he walks around the edge of the inner tubes, then on her signal he jumps in and starts digging for things.

Textured walking surfaces: There are a variety of surfaces to walk across, roll across, bounce across, crawl across, etc.

Tunnels: of all sizes and textures to crawl through, or lie in and get rolled about.

We also have Sensory Integration excercises that we do at home, under the direction of Jacob's OT. More about that tomorrow!

Netherlands horse rescue

Ok, all you horse lovers out there, you've GOT to check out this video of the rescue of over 100 horses who were stranded on a small island during a flood. It's simply amazing!!

removing the road blocks -- Sensory Integration

So our number one road block -- school, the eater of time to work on RDI -- was removed. It was time to address our number two road block, Jacob's rather significant Sensory Processing problems. Here's a typical picture of him looking anxious about a baking project -- he's worried about going near the oven because it is warm. Anxiety due to sensory issues was a pretty big part of Jacob's life when this photo was taken in late March, 2006.

I wrote previously about our early attempts at Sensory Integration Therapy. For over a year since that time, I had been wishing we could find the right Occupational Therapist (OT) to work with Jacob on his sensory issues. Part of our problem was locating someone, the next part was finding a way to work with them -- the closest I could find were an hour or two away. Hard to work that in when the child is in school. But once we pulled Jacob from school, it made us a lot more flexible. I immediately called the therapy group that a fellow RDIing Mom reccommended and set up an appointment for an evaluation.

The OT immediately identified Jacob as severely Sensory Defensive (certainly no surprise to us!), and laid out a massive Sensory Integration Therapy plan before me. I was completely bowled over. In reading her assessment of him, pinpointing all of his areas of difficulty, and her vast plans to repair the problems, it was a wonder to think that this child functioned as well as he did! And I nearly did backflips of joy to think that FINALLY we were addressing this!

The weekly one hour sessions were expensive, and our program was projected to take two to three years, but I was allowed to watch the OT work with him and learn how to work on Sensory Integration with Jacob at home, so we decided that between the sessions and the education I was getting, it was worth taking out yet another credit card to pay for them. Other than RDI, this was the best investment of time and money we've made to date.

I spent the first month of weekly visits in tears, thinking about how badly the vast majority of kids with Autism NEED this sort of therapy -- the tears were because I know that most kids aren't getting it. Even just in that first month, Jacob made progress with his sensory issues, and within a few short months, he'd made noticable improvements in the following areas:

Vestibular System: this is one of our "base senses", which simply put is our sense of balance. Our vestibular system is what makes us feel dizzy when we spin around. A child with an underactive vestibular system will spin themselves around so that they can get that vestibular input. Jacob's OT uses an "astronaut board" (sort of a big lazy-susan that the child sits and lays down on) to stimulate Jacob's vestibular system in a controlled manner. At the start of his sessions, Jacob refused to turn upside down (his vestibular system was hypersensitive), but now he readily hangs upside down from the monkey bars at the playground and does headstands and summersaults at home. The way he holds his body has become much less rigid, and he no longer has that "perfect posture", the stiffness that made him "look" different than other kids when he moved.

Proprioception: this is another base sense, which allows your body to know where it's pieces are and how to get them to work together. Many kids with Autism are Sensory-Seeking types, that crash into things regularly, bang their heads or limbs on things -- these kids are looking for that proprioceptive input that most of us get in more subtle ways. In other words, in the case of a head-banger, unless they crash their head into something, they don't know it's there. In Jacob's case (and with any child that is Sensory Defensive), he had hieghtened proprioception -- he was overly aware of his body, and even the slightest touch caused him discomfort. For example, he used to move away from touch, turn away from us when giving us a hug, scream when a drop of water fell on him. This is the area that has been most vastly helped by our Sensory Integration program -- he no longer shrinks away from being touched by others or things. Not to say we're anywhere near our end point with this -- his problems in this area were pretty huge, it's going to take awhile to completely rid ourselves of them. But as soon as we made progress in this area, we finally started making progress with potty training (which I'll address as a seperate topic at another time) -- prior to this he just couldn't handle all the proprioceptive input that using a toilet entailed.

Tactile: this is somewhat related to Proprioception. Being Sensory Defensive, this was an obvious problem area for Jacob -- he refused to touch just about anything. It took years for me to get him to touch sand, and even then it was just to touch it, not to run his fingers through it or dig in it. (As opposed to the sensory-seeking child who is constantly covering themselves with all manner of dirt and goo for the sensation of touching it.) At first he would tentatively climbed into a ball pit and carefully picked up balls and moved them about when directed to search for things hidden within the pile. Now he jumps in without hestitation, sinks into the pile of balls, and roots around with hands and feet searching for hidden treasures. Now he reaches out to explore new textures, digs through the sand with his hands, and no longer screams when he gets a little dirt on his clothes. (Water is still a major issue we're working with -- so far he's OK if he touches it, but not OK if it touches him.)

And a major perk about Sensory Integration Therapy is that it provides an outstanding framework for working on RDI Stage objectives. The vast majority of the activities that we video tape for our RDI Consultant are OT activities, spotlighting our RDI objectives.

I personally think that Sensory Integration is not only compatible with RDI, but a neccessary component of a rounded Autism Remediation program. It makes sense right? How can a child's brain learn to proccess the world normally if their bodies are physically unable to?

removing the road blocks -- school

This is a photo of Jacob on his first official day of homeschooling -- his last day in school was April 1, 2006, this photo was taken April 2nd. Here he's learning the finer points of duck herding, and working in coordination with his brother to move them (a generalization of Stage 3 -- although working with live animals always provides PLENTY of Stage 4 variations!).

The decision to pull Jacob from school was an incredibly easy one. We had already decided that he wasn't going to attend Kindergarten in the fall, as we didn't want him in a situation where he would be discouraged to talk with other kids when he felt the urge to (as would happen if that urge occurred during class time). Since we had originally (prior to discovering that he had Autism) planned on homeschooling anyway, it wasn't much of a leap for us to make that commitment. It was just a matter of timing.

We had planned to allow Jacob to finish out his second Pre-K year, but once we identified that the school was a road block that needed removing sooner rather than later, we called an IEP meeting to inform the school team of our decision not to finish out the school year. The school had been quite supportive right along of our RDI program, and agreed and supported our decision to take him out -- there was just no arguing the progress that we were making with him, or the reason that progress was taking place. We made plans to schedule Jacob's 3-year re-evaluation for this coming January, and said farewell to the classroom.

We instantly were able to see the results of our decision -- an entire day's worth of RDI opportunities every day all week long kept Jacob in a more consistently regulated state, and started yielding the results we were hoping for. And I had the time to spend seeking out a proper Sensory Integration Therapy program now that we didn't have to work around a school day.

road blocks

Obviously, I'm not talking about the kind of blocks that are in this picture!! But I thought it was a cute photo, and was taken during the time frame I'm about to talk about.

Up until Stage 4, we had been chugging along nicely. Pre-stage-work regulation, Stage 1, 2 and 3, all had been accomplished in about a year's worth of time. Yet once we hit Stage 4, we seemed to come to a sliding halt. We progressed slowly at first, getting Jacob to tolerate more and more variation. But 6 months later, we were still only at the point of toleration. ENJOYING variation still seemed like an unatainable goal for us.

In talking with some other RDI parents on various internet venues, we decided that there must be something (or more than one somethings) standing in the way of our progress. After much thought about it, I decided that we were facing 2 road blocks in our program:

1. School. It just wasn't helping us attain our goals of Autism Remediation, which to us was definitely the #1 priority. I knew how much I accomplished with Jacob during the summer prior to the 2005-06 school year, and I knew how LITTLE I was accomplishing since. He was gone half the day, and it took about half the rest of the time we were left with for him to re-regulate to our household (and to recover from being in school!). That left precious little time to work on RDI.

2. Sensory Processing Disorder (SPD, formerly known as Sensory Integration Dysfunction). We had attempted to address Jacob's sensory issues prior to discovering RDI, but while we had seen a bit of an improvement, we hadn't had outrageous success with it. We couldn't find a professional OT with training in Sensory Integration to work regularly with us, and the program we attempted at home met failure at every turn, due both to lack of professional support, and also, I believe, due to the fact that Jacob was entirely unregulated and not ready for it to help yet. But I thought the time had now come to truly address his sensory issues, as they seemed to be standing in the way of his progress. How was he supposed to get excited about trying new things when his sensory processing was being constantly overwhelmed by input whenever he did make an effort to reach out?

The next two nights I'll post about our solution to each of these road blocks in detail. With them out of the way (or at least shoved aside enough to let us squeak by, in the case of the sensory problems!), we suddenly burst forward and mastered most of Stage 4 in about a month's time!

it's not what you do, it's how you do it

Something that seems to be a common problem amongst parents in RDI programs is becoming too focused on finishing a task they start with the child (and I've been guilty of that myself from time to time). While you of course get your chores and projects accomplished while working with the child, it's important not to make the focus of the interaction about finishing whatever it is you're working on -- it's about working on it together.

For an example, here is a photo of The Map Man and Jacob digging a hole -- great Regulation and Master/Apprentice activity, and easily adapted to any stage work -- for stage 1, spotlight any connectedness with you; for stage 2, spotlight the child referencing you as to where to dig or where to place the shovelful of earth; for stage 3, spotlight doing the work together; for stage 4, add variations, like where to dig, how much to take, what to use to dig with, how deep to dig, what to do with the dirt, etc.

If the two of them had set out just to dig a hole, then a hole would get dug, but a lot of opportunities for interaction would be missed. For instance, when The Map Man threw a shovel full of dirt onto Jacob's shoes, which resulted in some nice emotion sharing (and a surprising turn-about when Jacob tossed some dirt at The Map Man!). Or when the two of them took turns digging out the dirt -- certainly The Map Man could get the job done more efficiently himself, but taking turns gave them a chance to work together on it. Or if they were to stop digging the hole they were working on to go work on a new hole, and yet another, then wound up alternating between 4 or 5 holes -- that certainly is not the most efficient way of digging a hole, but when working on variation, it has great value.

Oh sure, the holes got dug. But it was the stuff that went on during the process that mattered, not the end product. That's true of any RDI lifestyle activity you undertake -- it's important that you aren't trying to "get" your kid to do something -- you want to use your chores/activity as an opportunity to connect with them. So what if it takes 2 hours to sort the laundry? (In fact, at one point while working on Stage 4 variations, Jacob and I meticulously sorted socks into piles, then I threw them all into the air and scattered them about the room -- we immediately left to go outdoors for a walk, leaving socks strewn about the house!) Isn't Autism Remediation more important than getting things done quickly?

I had a friend that was fond of saying "The end product is nice, but really, the worthwhile part is the journey." She wasn't talking about (nor had she probably ever heard of) RDI, yet I couldn't agree more.

thankful

Each year that goes by, I have more and more to be thankful for.

I'm thankful for my two beautiful, healthy boys.

I'm thankful for a good solid marriage with a good solid man. I keep hearing that the divorce rate amongst parents of kids with Autism is 80%. I can see why, we've had more than our share of stress over the past several years. But in riding out the storm, it's made us stronger. I think our commitment to our family has been made stronger because it wasn't easy to do, yet we chose to stick it out anyway. I'm also thankful that I'm still crazy in love with him (and that it seems to be mutual!), which I know isn't always enough to keep a marriage together, but it certainly makes it more fun!

I'm thankful that I continue to enjoy the company of my parents, my siblings and their families. And The Map Man's family too. Both families are full of good solid marraiges, which I found very supportive when things didn't feel so solid.

I'm thankful for friends, both old and new. One of my favorite songwriters once wrote "Old friends, they mean much more to me than the new friends, 'cuz they can see where you are, and they know where you've been." I dunno. I love my new friends pretty intensly. They may not have been by my side during the walk, but they've been walking the same path. I think that counts for as much as the ones that have been with me all along.

I'm thankful that we're still here on our farm. That almost wasn't the case, we came really close to selling last fall. But we decided to stick it out, come what may. We're still not sure what may come....but we're enjoying being here, and we have every intention of remaining here until someone drags us off kicking and screaming....

I'm thankful for wagging tails, warm pony breath, goat kisses, fresh chicken eggs, purring foot warmers under the quilt at night, and sheep dotting the landscape in the early morning fog.

And last but far from least, I feel like we are perched on the edge of Autism Remediation for Jacob. If that's not a reason to be thankful, I'm not sure what is.

Happy Thanksgiving, and a warm pony hug, to you all!

Stage 4 activities

It's getting harder to write about "activities" in the Stages, because Stage 4 is where the line between our life and our RDI program really started to blur. I didn't set up "activities" for Jacob anymore, I just scaffolded what I was doing anyway and included him and spotlighted how amazingly fantastically awesome things were when they were done DIFFERENTLY.

I came home from the 4-day workshop, committed to making Jacob's life more difficult! Ok, well, I was committed to providing him with enough challenge that he had no choice but to use his brain. And I'd finally shed the worry about him having a big unproductive meltdown. We went to bake cookies, and I put a fully wrapped package of dough in front of him. He looked at it, looked a me, and said "uh, Mommy. We need the scissors." We were on our way to higher thought processes!

Here's the way I added Stage 4 variations to our life:

We baked different kinds of cookies. We topped them with different things. We ate them raw instead of cooking them. The first time I set a package of chocolate chip cookie dough (which Jacob won't eat, and up to that point wouldn't even touch) in front of him, he burst into tears. I didn't care. I handed him cookies and directed him to put them on the sheet, talking about how much Daddy likes chocolate chip cookies. He cried through the entire thing, but he did it. And when his father came home from work, he was at the top of the stairs proudly telling him all about the cookies we made just for him, then beamed with pride as The Map Man ate one and made a fuss over how good they were.

We ate breakfast items for lunch, and lunch items for breakfast. We ate cereal off of plates and out of pots. We ate under the table.

We went home different ways from school. At first this caused a lot of crying and distress. I didn't care. We went different ways anyway. Eventually he put up with this, and started saying "I wonder which way we'll go home today". By the end of Stage 4, he'd celebrate finding a new way somewhere. "Oh hurray, a short-cut! Let's go down this road!" Now he views taking a road we don't know as an adventure rather than an afront to all that is right.

We did laundry in every different way imaginable. We'd throw clothes at the baskets. We'd throw clothes at each other. We'd put the clothes on instead of putting them in the basket. We'd put them on inside out, upside down, socks for ear warmers and underwear for hats. While handing him items of clothing, I'd occassionally hand him something else -- a book, a toy, a shoe. The more ridiculous the variety, the more natural the spotlighting was because it cracked us both up.

We unloaded the dishwahser in various manners. I'd drop bowls. I'd put cups in the silverwear drawer. I'd put dirty dishes away on the shelf or load the dishwasher from the cabinets of clean dishes. I even put the cat in the dishwasher (BREIFLY) so that when Jacob opened the door, she'd jump out. (She didn't, by the way, she was very happy to be in there, I had to crawl in and drag her out! But Jacob was still plenty surprised to see her in there!)

We brushed the pony changing up brushes every couple of minutes (different types, colors, sizes). We braided his mane and tied the braids with different types of barrettes. We fed him different types of treats (it got to be a game to see if there was anything he wouldn't eat! Apparently the answer is no.).

We played a game where we sat across the room from each other, pushing a dump truck back and forth. I would fill the bed of the truck will all sorts of nonsense, and he'd wait anxiously to see what was going to be in the truck this time.

We still did tons of crafts. This time the goal was to make whatever we worked on different every time. We made foam gingerbread men for Christmas gifts, each one decorated uniquely.

We sang tons of songs using movement in it, and kept varying the movement. Clapping, stomping, spinning, dancing, skipping, hopping, jumping, rolling, squatting, toe-tapping, etc. We played different instruments in different ways. We had marching parades where we changed to a different instrument every time I blew a whistle.

We made up new verses/rhymes to old songs/poems. We made up alternative pronunciations for common items (hats and mittens became cats and kittens, for example).

And we did a whole lot of things that weren't really Stage 4 (Variations), they were really Stage 5 (Transformations). But I was confused on the difference between the two. More on that another time. Right now I have to go pick up my dinner fixings for tomorrow!

the 4-day workshop

We thought we had worked it out so that both The Map Man and I could attend the 4-day RDI Parent Training workshop in January. Connections Centers highly recommends that you attend this as a couple (to the point of highly discouraging you to attend as a single, and basing pricing per couple -- no discount if you come alone), so although we had wanted to attend a 4-day earlier in our RDI program, we had to wait until it was somewhat local, as we can't both be away from our farm overnight at the same time. In January 2006, it came to Boston, so we signed up, and arranged for my Mom to stay at our house for the week and watch the kids during the day while we drove back and forth (2 hours each way) to attend the workshop. Seemed like a great plan, until my Dad hurt his back and needed my Mom at home with him. So yet again, I headed off to a workshop without The Map Man. Really, he's the one that should have gone, but he just didn't want to do it by himself, and was afraid we wouldn't get our "money's worth" if it was him instead of me that went.

The 4-day workshop was an in-depth introduction to RDI, with direct work on the new Parent Objectives and specific exercises to work on setting up RDI activities for your child. In short, it was everything you need to know to get started working in RDI with a Consultant. I really wish we'd been able to get to a workshop a year earlier, as this would have cleared up SO much of my vast confusion when I started out. Dr. Gutstein is concise, clear, and overwhelmingly brilliant. Unfortunately for me, he didn't say a whole lot that I didn't already know. If I had it to do over, I wouldn't have spent that sort of money on something that I was clearly beyond. So although I enjoyed the workshop, and feel that The Map Man DEFINITELY would have benefited vastly from it, and also feel that this is THE very best start to an RDI program that you could possibly have (no wonder some consultants require attendance at a 4-day as a prerequisite for working with them!), I can't say that I personally learned a whole lot from it.

HOWEVER, what I did come away with were 3 very key things in furthering our program. We were a few months into our Stage 4 work, and while I felt that we were progressing ever-so-slowly, I was starting to realize that we might need some sort of shift in our criteria if we ever hoped to master Stage 4 before Jacob graduated from high school. I got that boost from the 4-day.

Here were my 3 eye-opening realizations:

1. I was still living in fear of "the big meltdown". Even though it had been months and months since Jacob had produced a truly earth-shattering meltdown (which in and of itself was amazing, given that they were a daily -- or sometimes twice or thrice daily -- occurrence prior to RDI), I was still dealing with my own emotional fall-out from the trauma of those days, and was afraid to push Jacob too far, for fear of producing "the big meltdown" again. Dr. Gutstein showed video of a boy doing an RDI exercise (I think it was stage 6, which I was pretty in awe of at the time) with his mother. His task was to take an item of clothing from one end of the hall, bring it down the hall and put it in the washing machine. His mother was making this task impossible. She kept swiping the item from him, blocking his way, putting obstacles in his way. He kept coming back for more attempts -- even though he was starting to get upset with her, even crying at times. Dr. G said "He's upset, but she doesn't care. She knows that's just his way of expressing his frustration at how hard this is. She keeps on working on her objective with him." Eventually after many attempts, the boy is finally successful in outwitting his mother and getting that item of clothing into the washing machine and shutting the lid. The look of accomplishment and pride -- the look of COMPETENCE -- on his face is burned into my memory. I gasped, and realized that I was still living in fear of Jacob completely losing it, to the point that I kept backing off when he got upset. I needed to push harder when he got upset, for him to learn to work to succeed. "They have to learn that it's OK to get upset, they can recover from it and go on to succeed" said Dr. G.

2. Related to the above, it was pointed out to me that I wasn't giving Jacob enough challenge. I was over-scaffolding, being too careful to make sure that he was successful that he didn't have a chance to really work on problem-solving. I was too afraid of him having a meltdown about it. This was pointed out to me by my "small group leader" -- the workshop is held as a large group for the first day and the mornings of the next 3 days, with Dr. G presenting his RDI information, showing video clips, etc. The afternoons of the last 3 days the participants are broken down into smaller groups, with a Certified Consultant as a group leader. This is where the individual program work comes in, as participants actively work with their spouses on identifying their child's strengths and weaknesses, and come up with some specific plans for activities to work on. The Consultant also meets privately at some point with each couple (at breakfast, lunch, or dinner) for a private consultation based on a video tape that was sent in ahead of time. The first thing that my group leader said was "You've got to stop scaffolding so much, he needs some challenge!" She hit the nail on the head, and we spent the rest of our private session discussing ways to give Jacob more of an opportunity to problem-solve. (For example, in cookie baking, instead of having everything we need out on the counter ready to go, put out a few items and let him figure out what we're missing, and where to find it.)

3. The confidence that the research results are supporting that this works. Dr. Gutstein presented some research results (that are still unpublished, I believe) to support the effectiveness of RDI. The studies were done by Connections Center, so they aren't exactly unbiased. Unfortunately, although I went scrambling around my admittedly disorganized office space, knowing that I was writing about the workshop today and hoping to get my hands on the results he provided us, I can't find my copy of them anywhere. And since they are unpublished, I can't direct any of you to go find them either. Which is frustrating me beyond belief. But they showed a very large percentage of kids moving one or two diagnostic categories after 2 or 3 years of RDI. Kids that started out as "Autism" had moved to "ASD", kids that had started out as "ASD" had moved off the spectrum altogether. I think every child in the study (20-something if I'm remembering correctly) had changed at least one diagnostic category. There were bunches of other more intricate details that I won't even begin to guess at, but those were what most stuck out in my mind and gave me the biggest reason to jump out of my seat cheering (if memory serves me correctly, I don't think I actually did that, but I wanted to). There it was -- PROOF that Autism could be remediated.

Not that I needed proof. I could see for myself with my own child. And once we got through Stage 4, the whole world could see.

Message for tonight: Get thyself to a 4-day Workshop!! I can't recommend it highly enough for anyone starting out on the RDI voyage. It will help you build yourself a sturdy boat and give you the tools you need to launch it and keep it afloat as you head out into the deep water. Certainly a better deal than how I did it, paddling a leaky canoe with a tennis racquet....

the big one -- Stage 4

Fall of 2005 had come, and Stage 3 had been mastered. Jacob started back to school (in pre-K for the 2nd year in a row, there because I petitioned for him to repeat rather than go on to Kindergarten). It was time for what we refered to as "the main event" around here - Stage 4.

Stage 4 is Variations. It was a daunting task -- for mastery, he had to not only TOLERATE variations/change, but also had to ENJOY and even PREFER variations to the way things were usually done. Up to this point, Jacob had absolutely no tolerance for doing anything other than the way it had always been done, refused to try new things, and pushing the matter was sure to cause an ugly meltdown. He needed to transform from the World's Most Inflexible Child into Mr. Go-With-the-Flow. We knew the road ahead of us was long, winding, bumpy, and potentially full of man-eating potholes.

To be fair, we'd already been working on the teeny tiny first tippy-toe steps into Stage 4 by adding ever-so-subtle variety to our RDI activities with Jacob. So he was primed to get working on this stage. We held our breath and dove in.

It wasn't pretty at first. In fact, it wasn't pretty for quite awhile. But it got better. And several months into the stage, I attended the 4-day RDI Parent Training Workshop which helped me get over my "fear of the big meltdown", after which we really started making some headway with Stage 4. (More on the 4-day program tomorrow.)

I'm planning on spending the bulk of the rest of this month talking about the year we spent working on Stage 4 and 5 (which, due to my confusion, I wound up working on together -- more on that later, too). After which I'll be all caught up on our past and can start focusing on what's going on with our Autism Remediation program now, and get more into our day-to-day life with RDI.

and what about The Map Man?

I hate Picasa! This is the 2nd night in a row that a post I've composed via Picasa has disappeared when I posted it to Blogger. I'm done with it, I tell you, done! May take me longer to edit and then find my photos this way, but I'm going to take the time to save the aggravation!

ANYWAY, I will try to re-say what I thought I did a pretty good job of saying originally!

So far I've done a whole lot of talking about me, a whole lot of talking about Jacob, a little bit about Zoo Boy, and almost nothing about The Map Man. I thought it was high time to write a post about what an RDIing/Homeschooling Dad who works full time out of the home, and who himself is on the Autism Spectrum, contributes to the Autism Remediation and child education proccesses.

On the surface, it may not look like much. He's got more of a keep-a-roof-over-our heads and do-his-best-to-support us sort of role, by neccessity. I mean, 10 1/2 hours a day, 5 days a week, he's not here, he's out earning a paycheck so that I can spend that time with the kids. The bulk of the rest of the time, he's trying to tend to their needs while I work (which amounts to about 20 hours a week on average, nights and weekends), or sleeping. It doesn't leave a whole lot of time for learning about, getting comfortable with, and implementing an RDI program.

But don't think even for a second that he plays a lesser role in the big picture! He's educated himself about Autism and RDI, and agrees with what we're doing. He attends as much of the RDAs as he can. Since our last RDA, he's made a point of taping a segment of himself and Jacob for every RDI tape review we have (he tells me what he wants to do with Jacob -- usually a building project of some sort -- and I help him pick out an RDI objective to spotlight and help him decided how to frame and scaffold the activity to ensure success). He's a natural Master to Jacob's Apprentice, and he involves the kids in every handyman and yard work project that he can. He's their favorite playmate, and he loves taking them out into the forests for hiking or letterboxing. And, most importantly to me (and something that's value can't be underestimated), he doesn't do anything that undermines our RDI program. That is a very key element to our success -- that consistancy in parenting. So even though I'm the one that's at the helm of our RDI program, he's got a firm grasp on one of the oars and is paddling with every ounce of strength he has to keep us on course.

He's also turning into a homeschooling super-dad. Since we started working with Enki Education, he's been following the same daily rhythms with the kids on the weekend that I do with them during the week. He involves them in projects that follow the themes I'm working on with them. And he's an important part of our Family Story Time in the evenings before bed (I'll write more about the specifics of our daily rhythms and homeschooling program in the future, when I get there with our story). He's quite a bit behind me in reading the Enki Education materials, but from what he's already read, he's told me that he wants to be a real part of the kids' homeschooling program. That's a pretty big leap for a guy who originally said that he wasn't comfortable with the idea of us not sending the kids to school!

So although The Map Man has left me with the decisions of which direction to take our family in, I'm glad that he has chosen to come along for the ride, and grateful for his strong shoulders to support us on our journey.

what about siblings?

Ok, so this is my 2nd attempt to post this. The first one was lost into the cyber-ethers somewhere, something that has happened to me before while using Picasa to post on Blogger. If only I could edit my photos more easily while directly ON Blogger I wouldn't have these problems....

But anyway, I'll try to remember what I wrote!

One of the most common questions I get when I discuss our RDI program with someone is "but what do you do about his brother?" The answer is simple (now): We include him.

It wasn't so simple when we first started out, however. During the first stage of RDI, even Zoo Boy's presence in the room was enough to turn Jacob into a dysregulated mess. So we had to sneak in RDI sessions when Zoo Boy was napping, or when The Map Man had him occupied in another room (and even then, the noise of Zoo Boy coming from the other room, even through closed doors, was enough to distract Jacob away from whatever I was trying to do with him). By Stage 2, Jacob was able to tolerate Zoo Boy in the same room, but I kept everything up at table-level while trying to keep Zoo Boy at floor level. Sometimes that worked, but most times not, and more often than not our activity would up with Zoo Boy messing up whatever we'd been working on and Jacob running screaming for his room, not to reappear for hours. (It was really fun trying to get a video tape done and submitted to our Consultant!)

I had gotten so used to NOT including Zoo Boy that it never occured to me that I COULD include him. That is, until one day, soon after starting Stage 3, our Consultant said "why don't you just include him in everything?" Well, um, DUH. Why didn't *I* think of that!!

So we started giving Zoo Boy a real role in the activities we did with Jacob. And darned if he didn't go from being the biggest obstacle in our RDI program, to being our biggest asset. Not only was he a great role-model for Jacob in the activties, but he naturally brought the objectives we were working on into his play with Jacob. It became 24-hour-a-day non-stop RDI around here; it was like we had a small live-in therapist on the payroll. Zoo Boy definitely has a knack for being an RDI coach, and The Map Man and I have joked about renting him out to other RDI families that don't have little siblings to run their programs for them. And, because he became so used to coordinating with his brother, Jacob was easily able to take his RDI skills and generalize them with other kids. That certainly wouldn't have come so easily if he was transitioning from just working with his parents.

Another HUGE benefit of including Zoo Boy in our RDI program was that I finally stopped worrying about how he might be perceiving all this "special time" we were spending with his brother, and what effect that might have on his developing self-esteem. Now there's no reason for him to ever feel jealous of all the time we spend with Jacob, because he's included in everything too. (We've even managed to get him included in Jacob's Sensory Integration sessions, thanks to a wonderfully understanding therapist.)

I know that including siblings does not work out for every family doing RDI. Sometimes the older child with Autism takes offense to a younger sibling taking on the role as the role model, which they perceive as something the "big" brother or sister is "supposed" to do. Jacob never had (still doesn't) the self-awareness to question his place in the family heirarchy, so he's never questioned why Zoo Boy is the "leader" in so much of their play, which makes it work very well for us. But I know just as many families who have very successfully incorporated older siblings as coaches for their younger sibs with Autism, to the benefit of the entire family.

Now I'm going to try posting this. Wish me luck....

feeling supported

I guess because I'm feeling particularly supported today, after spending the afternoon with some RDIing/Homeschooling friends, I wanted tonight's entry to be about finding support.

You might live in an area where nobody's really heard of RDI. We were sort of in that boat when we started. I'd heard of local RDI support groups in other areas of the country and felt jealous, but we didn't have anything like that around here. I didn't want to get involved with the local general Autism support groups, because they were in such a different "place" than I was, and I knew I wouldn't feel supported there, just depressed.

So I turned to the internet. I know that a lot of people will "pishaw" internet relationships as somehow artificial, but in the multitude of RDI e-support groups out there, I found some real connections, some amazing support, and some wonderful friends.

The Connections Center itself has message boards for connecting with other RDI parents, as well as live chats with Drs. Gutstein and Sheely. In particular, Dr. Sheely's Beginner's chat was absolutely invaluable to me for connecting with other RDIing families, and getting my questions answered during my first year or so of doing RDI.

Then there are the Yahoo groups. There are groups for general RDI support (you can find some of those listed on The Connections Center site), groups for folks in particular areas of the country (some of which allow members from outside their base area), groups for folks using particular consultants. There are general homeschooling groups, groups for folks homeschooling special needs kids, groups for people homeschooling kids with autism, and groups for families homeschooling using particular approaches, or curricula, or with common religious beliefs. There didn't seem to be a group to support parents doing both RDI and Homeschooling, so I started one (RDI-Homeschoolers). I thought that maybe a dozen or so folks might like to chat about incorporating RDI and Homeschooling. I vastly underestimated the interest -- as of this week, there are 425 members. I'm also a member of an e-group for families using Enki Education, and a couple of smaller private support groups for specific interests related to RDI and/or homeschooling.

As for internet friendships not being "real", all I can say is BULL. Some of the people I hold most dear are other RDI/Homeschooling parents that I met initially on-line. Kyra and I met in person at the 2-day workshop (and later at the 4-day workshop, and more and more often as time goes by), after initially getting to know each other first on an RDI support list, and then via exchange of private emails. A whole bunch of us from the RDI-Homeschoolers e-group met up at the Annual RDI Parent's Conference this past summer, and it was as if we'd known each other our entire lives. Those friendships that you forge on-line can be as real as any that you make via live support groups. And those people are just as supportive. Maybe more so, since you have 24 hour access to them via the internet!

RDI started catching on a bit in our state last year, and it seemed like there might be enough interest to start a local support group. The Connecticut RDI Parent Support Group was created and a few meetings were held, though there wasn't enough sustained interest to keep it going a the time, so it took a break over the summer. But in the few meetings we had, I hooked up with a very cool family that uses the same consultant we do, who have become friends of ours, and their son a potential future Dyad Partner (a crucial step in the RDI process) for Jacob. So we ended up finding some support even though it intially seemed unlikely! However, a new meeting of the group has been scheduled for next week, and there are now even more families, and a couple of consultants-in-training, interested, so perhaps this time it will fly. (If anyone wants more information on this group, please leave me your email address in a comment and I'll put you in touch with the organizer of the group.)

I tried out several local homeschooling support groups over the past several years, never finding one that was quite the right fit until CT-CHEER (Connecticut Cooperative of Homeschool Educators East of the River) organized this past year. Several groups combined to form a larger group, where there are no officers or any one person "in charge", so all members are welcome to organize and advertise classes, program, and field trips. I've connected with several nice local families this way, and have particpated in a handful of fun events with other homeschooling families. Still, the group was large and wasn't quite what I had in mind for ongoing, intimate support. The few other members with children with Autism were pursuing different avenues of treament (or no treatment), and while I enjoyed chatting with them and sharing expriences, I craved the sort of support that I felt that I needed.

So I started talking with a few homeschooling friends with kids at similar developmental levels as mine, and we started talking about forming our own homeschooling co-op. And today we met informally as a group for the first time, to let the kids get to know each other, and to discuss what we'd like to see in a co-op. I think it's going to work! We adults were all very enthusiastic about this, and the kids got along really well and had a blast together. The group is very small (5 kids), and all the kids have special needs (well, except for Zoo Boy, tho an argument could be made for him in that category anyway, given that he's already informally getting some OT and help with his speech at Jacob's Sensory Integration sessions. Zoo Boy most certainly does not have Autism. But I also don't think I'd go so far as to call him "typical" either. I think "unique" is a better description!), and those of us with ASD kids are doing RDI with them, and two of us are doing Enki Education (and the other two are at least interested in it). So I think we're going to have a groovy sort of RDIish Enkiish totally rockin' good time!

In summary, my message for tonight is -- FIND YOURSELF SOME SUPPORT. Real support. Not just people patting you on the back saying "poor you" or sitting around commisserating about how hard it is to do this. Yup, it's hard. But get up and get proactive about finding the right support for YOU and your situation. If it doesn't exist, create it! Without support you can't stand, never mind fly!

Stage 3 activities -- games

Not EVERY activity we did in Stage 3 was about doing chores. We also played games and did fun stuff too. (Not that we didn't manage to have fun doing chores too, but like Dr. Gutstein always says, it's not about having fun, it's about competency!) So here's some things we did that incorporated our Stage 3 goals with our playtime:

We were fortunate to be in this stage during the summer and early autumn months, so a lot of our Stage 3 activities took place on the playground. We would go to playgrounds with side-by-side slides and the goal would be to slide down at the same time (obviously this photo taken from early in stage 3! By the time Jacob had mastered this stage, he was really quite good at coordinating his actions). I would scaffold this by making sure he was seated and then I did a 1-2-3 or ready-set-go count, and I would modify my actions to make sure we were coordinated so that I could spotlight that coordination (see the bottom of this post for spotlighting phrases that I used). We also would walk up stairs/ramps together, coordinating ourselves to arrive at the top at the same time. We'd walk across balance beams, stepping stones, etc the same way. He really enjoyed this activity, and by the time he mastered Stage 3 he and Zoo Boy were using coordinated games on the playgrounds and at home on their own.

We used the game "red light, green light" by having The Map Man or Zoo Boy do the calling while Jacob and I snuck up together, the goal to arrive there at the same time. When he got good at that, we alternated the roles around so that he was coordinating with the other family members too.

We were still doing a bunch of scrapbooking (still sending photos into school), so I'd prepare the photos and we'd each stick them on the page at the same time.

We'd set up parallel train tracks (using some good referencing and master-apprentice skills!), then push our trains on them, the goal being to get our trains to the end at the same time. Or we'd set up one long track and run our trains towards each other, the goal to meet in the middle.

We'd take stuffed animals, pretend they were mountain climbers, the goal to reach the top of the mountain (couch) at the same time.

We'd each take a ball, or a car, or anything that would roll, sit across from each other, and push them towards each other, trying to make them crash in the middle. Or we'd just push them back and forth to each other, especially on a day where regulation seemed to be an issue.

We did LOTS of actions set to music -- dancing, movement, whatever we could think of. The music was great scaffolding -- the beat kept us coordinated -- and it made whatever we were doing fun.

We played the card game "war" -- both players turn their cards over together.

We did TONS of crafts. I had to scaffold these pretty heavily, but the general theme was that it involved sticking something I'd prepared onto something else (buttons on a gingerbread man, eyes on a doll, wings on a bat, letters on a board, etc). We made decorative signs, we made fridge magnets, we made birthday cards, we made wreaths. We'd either work in a simultaneous parallel fashion (each with our own project in front of us, coordinating where and when we stuck stuff), or in a complimentary sequential fashion (I'd hand Jacob an item, he'd stick it in place). I made sure the projects were short and interesting, and then we'd find just the right place to display the end product (to generate talking about it throughout the day and with anyone that came to visit), or just the right person to give it to as a gift (then we'd wrap it, and present it, giving more opportunities to discuss just how we did it together).

We did projects in the yard. Digging a hole, we'd take turns, I'd take a shovel full, he'd take a shovel full. Or The Map Man would scoop out a deep shovelfull and put it on the edge of the hole, then Jacob would take it from there and move it to a pile. We gardened -- I'd hoe a roe, he'd plant a seed. I'd dig a hole, he'd place in a bulb. Or I'd put in the bulb and he'd cover it up. Or we'd have two holes and work on putting our bulbs in together. Then we'd each take a watering can and water our new garden together.

Throughout the Stage, I did a lot of spotlighting with phrases such as "We did it together!" "We're a great team!" "We work great together!" "Yeah team!" "Hooray, we did it!" "Wow, what a team!" "It's always more fun when we do things together." And I meant it!

Stage 3 activities -- lifestyle

I LOVED Stage 3! I was brimming with competence from having successfully navigated the first two RDI stages, and was fresh off the 2-day workshop and my new commitment to making RDI truly our lifestyle. I was raring to go and there was no stopping me! Our entire day became RDI!

One note, in this stage we were finally able to abandon the undistracting room and took our "RDI show" to any location we pleased. We truly made the transition to RDI lifestyle.

Here's what RDI lifestyle looked like for us during Stage 3:

Making the beds: We'd each stand on one side of the bed, and pull the sheets and blankets up together, then switch to the other side to even it out. Or we'd each stand on opposite sides of the bed and pull the sheet up across the entire bed together. I'd lift the mattress and he'd tuck it in. He'd toss me pillows and I'd place them on the beds, or vice versa.

Unloading the dishwasher: Jacob would hand me things from the dishwasher, and I would put them into the cabinets. Or I would hand Jacob things from the dishwasher, and he'd put them in piles on the counters. We continued to incorporate referencing activities with all of this, because that's the way RDI works -- one stages morphs into the next. It's all sort of seemless, something that I adore about it.

Laundry: I'd hand Jacob clothes from a central pile of dirty laundry, he'd toss them into the right baskets. We'd carry the baskets together (with him on one side, me on the other) down the hall and stairs. I'd hand him clothes out of the basket, he'd put them into the washer. Or vice versa. Or we'd each select articles of clothing and then coordinate throwing them in together. Same thing in reverse when taking them out of the dryer. We'd carry the laundry basket together back up the stairs and down the hall. We'd dump the basket together. I'd fold the laundry, then give it to Jacob to put in the appropriate piles. We'd carry the piles to the appropriate bedrooms together, we'd open the drawers together, we'd put the clothes inside together.

Sweeping: I'd sweep the floor while Jacob held the dust pan, or vice versa. I'd hold the trash bag while Jacob dumped the dust pan, or vice versa. I'd tie the bag shut and we'd carry it together out to the trash barrel.

Vaccuuming: I'd push the vaccuum cleaner while Jacob moved things out of my way. And vice versa.

Dusting: Each armed with our own feather duster, we'd attack the house in tandem.

Washing windows: I'd go on the outside, he'd stay on the inside, we'd each spray our spray bottle (trying to match spots on the window), then we'd both wipe, trying to match each other's movements. Or we'd stand on the same side of the window -- he'd spray and I'd wipe. Or I'd spray and he'd wipe.

Brushing the pony: Each armed with a brush, I'd take a swipe, then he'd follow suit. We had one clean pony! Same with brushing the dogs and cats and rabbits.

Taking walks: This is the stage where I finally didn't have to hold his hand everywhere we went to keep him with me!! Suddenly he was trying to walk WITH me. It was just GLORIOUS!!! On walks, if he slipped behind or got ahead, I would just clear my throat a little, and he'd get back to beside me and I'd spotlight that by smiling, or with a quick "hooray!" or by skipping a few steps.

Grocery shopping: LOVE doing RDI at the grocery store!! We'd take several small trips a week rather than one big one, so that we could fit everything we needed in a basket instead of a cart -- then we could each hold one of the basket handles and make our way through the store together. When we did need a cart, Jacob would either help me push it, or coordinate his walking to keep up with me. When we located items on the shelf, I'd hand them to him and he'd put them in the basket, or vice versa. At the register, I'd hand him items and he'd put them on the belt, or vice versa. We'd carry the bags out to the car together. We'd carry them into the house together. He'd unload the bags and I'd put the items away, or vice versa. I would have shopped every day with him!! And he knew that his role was very REAL and that he was a vital part of the process, so grocery shopping became one of his very favorite things to do.

Cooking: I'd add ingredients and he'd stir. Or vice versa. Or we'd each stir in our own bowls. Or we'd take turns stirring. For cookie baking, we'd each have a packet of pre-cut cookies, then coordinate our actions in getting them onto cookie sheets. For roll-out dough, I'd roll it out, and he would cut a shape, I'd pick it up, and he'd put it on the cookie sheet, then we'd repeat. For making his beloved cheese and crackers, I'd hand him a cracker and he'd spread the cheese on, or vice versa. Or we'd both have our own knives and coordinate making the cheese and crackers together (mirroring each other's motions). Then we'd coordinate taking bites of them.

Tomorrow (or maybe later today if I'm feeling particularly energetic -- I DO love talking about this stuff!!) I'll write about some of the games we played during Stage 3. 

onward through Stage 3

Stage 3 is "Coordinating Actions". Here's where all that Emotion Sharing from Stage 1 and Referencing from Stage 2 pay off. The child learns to do things WITH you. That you are a team. That he is truly your apprentice. That it is better to do things together than to do things alone. That you are FUN to be with! Hip Hip Hooray for Stage 3!!

There are 4 ways that two people can do things together -- these are those 4 basic RDI frameworks. You can do the same thing at the same time (parallel simultaneous), you can do the same thing while taking turns (parallel sequential), you can do related things at the same time (complimentary simultaneous), or you can do related things while taking turns (complimentary sequential).

In this photo, you can see Zoo Boy and Jacob playing on a see-saw. Great regulation activity! Also a good stage 3 activity with this particular see-saw, as both kids need to be doing their part to get the thing going. So Jacob pushes with his legs on his side, then Zoo Boy pushes with his legs on his side. Nice complimentary sequential activity! Also, they look at each other to see if it's time to do their push (there's that referencing!) and then they smile and laugh and have a generally good time together (yahoo! that's Emotion Sharing!). Stage 3 is where it all starts coming together.

Here's the biggest gain we got from Stage 3:

Before Stage 3, a scene from our house:

(Jacob vegging out in front of a video) Me: "Jacob! Let's go for a walk!" Jacob: (sound of droning silence, flapping hands slighting in direction of TV) Me: "C'mon Jacob, it's time for us to take a walk!" Jacob: (mutters several lines from the video) Me: "Ok, Jacob, I'm leaving on my walk now...." Jacob: "huh?"

After mastering Stage 3, a scene from the same (can you even believe it?) house:

(Jacob vegging out in front of a video) Me: "Jacob, I'm going to go unload the dishwasher". Jacob "Dishes? Hooray! I can help!" (running from video, left blaring by itself in the other room).

Other gains during Stage 3: Jacob really started getting curious about things. Curious enough to finally start asking simple questions like "what is that?" and "where are we going?" Still no "why" questions (that didn't come until we closed in on mastery of Stage 4), but new connections were definitely being made in his brain as a result of those new developmental pathways being forged. His overall awareness of his environment also increased, as did his connectedness with us (his family).

He still was a ways away from connecting with other kids on their level, but he was starting to take notice of what other kids were doing. Certainly a big step forward from where he was at during his RDA, when a video tape was taken of him in his Pre-K classroom, sitting in the middle of a group of boys who were pretending to be construction workers building a house. One of the boys gave Jacob a hammer. One of the boys pushed a couple blocks in front of him. Jacob absently hit a couple blocks with a hammer, while the other boys swarmed around busily constructing their building and chatting with each other. One of the boys came over and put a hard hat on Jacob's head. He looked up, expressionless, then went back to hitting his block with his hammer. This was the school's example of how great Jacob was doing playing with other kids. Grumble....

Flash ahead to mastery of Stage 3, and Jacob was actually participating in games of chase, and readily taking a passive but coordinated role in pretend games (so the other kid would be the doctor while Jacob was the patient, and Jacob would make appropriate comments like "oh, I feel so sick!"), so long as the other kid initiated the game and assigned him his role. It would take a fair distance through the next stage to progress further than that, and to expand to games that were less predictable and static. But still, it was an exciting social start!!

the 2-day workshop

We had purchased and viewed the RDI video when we first found out about RDI, and had found it to be incredibly confusing. I had eagerly awaited the release of the DVD (Going to the Heart of Autism), then immediately purchased a copy when it was available. It was so much more understandable and in-depth than the video, I was immediately glad that we owned it. Then I had learned bushels from our RDI Certified Program Consultant at our RDA. But nothing was to prepare me for how much inspiration, motivation, and clarification of the whole program would be gleaned by attending the 2-day Introductory RDI Workshop, which I did in June (or was it July?) of 2005.

First of all, nothing beats seeing Dr. Gutstein speak in person. He's charismatic, funny, and outrageously intelligent. And he oozes optimism and hope from every pore. He makes all those mystical scientific terms seem like the obvious. He gave our RDI program a kick in the pants from across the many rows of seats in front of me.

The video clips shown during the workshop are pure gold. They show kids that looked like mine at the beginning of our RDI program. Then they showed those same kids after a couple years of RDI. You wouldn't recognize them! I kept thinking "that's Jacob in another couple of years!" (Best part is, I was right!!) It made my heart soar!

Our living situation prevented the Map Man from being able to attend the workshop, so I brought my mother along with me. (The Map Man attended a 2-day workshop this past summer, along with his mother.) She too was blown away by both the presenter and the program, but had a different conclusion than I did about the whole thing. On the way home she gave accolaids to the program and its creators, but then added "I can't do it." That's OK, I thought. I can.

The biggest thing I came away with was the commitment to truly make RDI our lifestyle. At the time, we were just starting work on Stage 3, and I was rushing through my daily chores to get to a point where I had time to spend with Jacob "doing" RDI. From the moment I left the workshop, I abandoned that way of thinking, and starting the very next day, I simply made Jacob a part of everything I did. We "did" RDI while making breakfast, while loading the dishwasher, while sweeping the floor, while emptying the trash. It was an effort -- I had to sit down and think about how I was going to scaffold each chore so that Jacob could be successful at it AND have a real part in it. But it was only an effort for the first 6 months or so -- after that it just became a part of how I lived my life.

RDI was no longer just an Autism remediation program for us. It was about how we parented our kids, how we related to one another, and how we lived our moments day to day. It was about remediating our entire family.

As RDI has evolved, so too has the 2-day workshop. The Map Man tells me that much of what I learned at the workshop I attended, just a year earlier, was outdated. Research into Autism has continued, and RDI has kept pace. That's one of the great things about it -- it doesn't just rest on it's successes. It strives to keep on improving, to all of our benefit. Fortunately we are able to keep up with on-line resources such as e-groups, message boards, live chats, and the Connections Center newsletter. RDI is on the cutting edge in more ways than one.

experience sharing and espisodic memory

This is my last post tonight, I promise! But I'm on such a roll, it's hard to stop!

In a much earlier post on the core deficits of autism (see my July 29 post "what Autism is"), I mentioned Experience Sharing and Episodic Memory as two of the five core deficits of Autism. Experience Sharing is pretty self-explanatory, and is obviously being addressed by these early Stages of RDI. Episodic Memory is the auto-biographical memory that people depend on to learn from and to compare their own life experiences with others. In other words, their memory of competence. So you can see, this core deficit is also being address. We're forcing their growing neural connections to form in the areas of their brain that are lacking the proper connections for these things. We are remediating Autism.

Cool, no?!

I just think it's nice to step back and see the bigger picture on occassion. Now back to my usual picking apart of RDI in miniscule detail.... 

it's all about the competence

Actually, I think I'm borrowing that phrase from my friend Kyra, but I'm sure she won't mind. (Anything in the name of RDI, right, Kyra?! :-)

This is the real reason that you don't want to jump ahead and work on Stage 3 objectives when your child doesn't have Stage 1 skills in place, etc. RDI is a process, and a huge part of the process is learning how to build your child's competence. This starts even before Stage 1 work, as you work on Regulation and R-C-R. As your child starts feeling the competence that grows from small successes, they become more willing to reach out and extend themselves to new things. And feeling competent is a HUGE motivator.

Take this photo of Jacob, for example. He's a little over 4 1/2 yrs old in that photo. He's seen here competently scaling a climbing wall. At 2 years of age, Jacob could not climb, not even a single step, would not even try. So we started teaching him to climb, literally one step at a time. We'd give him something that was just a step high. We'd help him climb up onto it, and climb back off. He got competent at it and it became one of his favorite things to do. Then we upped the ante and made it two steps, and so on, until he could climb several stairs at a time, something that he practiced often, not because he was Autistic and obsessing over it, but because he felt competent doing it and wanted the good feeling that a person gets when they are sure they can do something. So we took him to playgrounds and, step by step, his competency at climbing ladders grew. By the time he first saw this climbing wall, he had learned that if he worked hard and took it step by step, he could be successful, so he worked hard for weeks to be able to scale this climbing wall by himself. If we'd taken him to this wall before giving him the experience of competency with the easier climbing equiptment, he would certainly have failed in his first few attempts, and not having that history of competence, he would most likely have given up. It would have been like attempting a Stage 3 activity when the child hasn't even learned how to be competent with Regulation.

All said because I know how overwhelming it is to view the DVD and see those kids working at Stages 3, 4, 5, etc, and think "wow, my kid wouldn't be able to do ANY of that". Neither could my kid! Until we'd built up his history of competency, and he had those building blocks of success to fall back on, none of it would have been possible. And trust me, I watch videos of kids at the higher RDI stages and find myself thinking "whoa, will my kid every be able to do that?" But I know the answer is yes -- I've grown my own competence with our RDI successes.

It's all about the competence! 

life opportunities

Something else I wanted to highlight is the importance of finding opportunities throughout your day to spotlight your Stage Objectives. I'll talk about this more in the coming week or two, as I get to the part of our journey where "lifestyle" RDI really started kicking in (which brought us to the point we are now, where we don't often set up activities to work on RDI objectives anymore, we just spotlight them as they arise in our daily life). But right now I wanted to point out that even if you're still at the point in your RDI program where you need a totally undistracting room to set up a successful activity, you can still be looking for opportunities the rest of the day to spotlight your objectives as they occur.

For instance, you may be unloading the dishwasher, and you accidentally drop a bowl and it clatters to the ground. If your child looks at you in surprise, you can spotlight that emotion sharing moment with a gasp or a laugh or an exaggerated expression, and you've just "done" some RDI Stage 1 work.

If you're working on Stage 2 and are at the supermarket in the cereal isle looking for Froot Loops (yeah, we've got a real healthy diet....), you could say to yourself (aloud) "Hmm....I'm looking for the Froot Loops....I wonder where they are....oh, I see them!" and then pause for a few moments while looking in the direction (exaggerating if neccessary) where the item is sitting. If the child happens to take the cue and find the box too, you can spotlight that moment with a bit of celebration "hooray, we found them!".

If you're walking in the park, and you spot someone flying a kite, you can look up, point to the sky and say "Wow!". You might even scaffold that thought by lifting your child up (or getting down on their level) and adding "what a beautiful kite!". If you're working on stage one, you can help him see it too, so that you can share that moment together, and spotlight the excitement of both seeing it. If you're working on Stage 2, you would allow the child to figure out where the kite is by referencing you, and then spotlight that moment. 

role reversals

Tonight I'm going to write a series of short posts about important things to keep in mind as you're working on Stage objectives. I was going to stick them all into one bigger post, but I've been seperating everything else out so far, I figure I may as well do this too.

Something that I've not mentioned in my previous post on Stage activities is the importance of reversing roles with the child in each activtiy. So, for example, when playing a Stage 2 "Find the prize" sort of game, it's important that the child get to hide the object and direct the parent to it with their eyes, in addition to the other way around. When playing "red light, green light", it's important that the child has turns being both the "caller" and the "sneaker". Not only does this add variation to to activity, but it also allows the child to get competent with both sides of the activity, and thus increases their understanding of the objectives. 

a note to the readers of this blog

First of all, I want to THANK each and every one of you for all the wonderful feedback you leave me on this site. I am overwhelmed and grateful to read each and every one (and perpetually surprised that anyone cares about anything I have to say!!).

Next, I want to apologize to anyone who had in the past asked me a question via this forum that I have not answered either in the comments section or in a post. I had an absolutely frantic month of October (September was no cake-walk either, but paled in comparison to the following month!), and I just didn't have time to keep up with stuff like that. The previous months I'll just blame on being new to the whole blogging game and not really knowing what to do about responding.

In any case, I'm making you all a vow -- if you ask me a question in the comments section, I WILL answer it, either in the comments section, or possibly in a post in the following day or two. Sometimes you guys remind me of something that I MEANT to write about, but drifted off in a new direction too quickly, so if it's something that needs more than a paragraph or two to answer, I'll probably do it in a post.

I'd also encourage any of you that have asked me questions previously that went unanswer, to go ahead and ask again. This time I promise I'll answer! Its too tedious of a task for me to go back searching the archives for questions I left unaddressed, but I never intended not to answer them -- time just got away from me.

Thanks again, everyone, and keep on learning about RDI!! It's completely changes our lives and Jacob's future, I know it can do that for your family too!

referencing activities

This photo, taken right as Jacob was mastering Stage 2, is a great example of referencing -- he's checking back with me to make sure I'm coming with him. Believe me, before RDI, this wouldn't have happened!! This was the big gain we had with mastery of Stage 2. He also became a master of reading my body language and facial expressions, which is useful in so many situations.

Here's a few of the Stage 2 activities I did with Jacob, and how I scaffolded them for initial success and building competence:

Referencing "red light, green light": this is the classic game where you turn your back and say "green light" as others playing the game sneak up on you, then turn around occassionally and say "red light!" and they all have to freeze. We started the game with the full version, saying "red light" and "green light!" as scaffolding, but then changed it to just the body language of having to freeze when the person turns around (without saying anything).

"follow my eyes to the prize" -- hide something under a set of cushions, or a set of pillows, or a set of beanbag chairs, or a set of cups, or a set of anything you could think to hide something under. (This is where that constant slight variations thing comes in -- you never do it quite the same way twice, so you are buidling in the "same but different" concept as you go along.) Then you look at where the object is and the child has to figure out where it's hiding based on where you're looking. Initially I scaffolded this by staring in an exaggerated manner (with my entire body) at where the object was hidden, even nodding my head at it. I also initially had the potential hiding places spread far apart. As he was successful, I'd make each time we played the game more challenging. So I starting leaving more and more of the body language out of it, so that he really had to focus on where I was looking, and I started moving the hiding places closer together so that he had to target in on which one I was actually looking at.

Another variation on this (working on a specific stage 2 objective): He had to visit the hiding locations and decide whether or not the prize was there by the expression on my face. I would smile if it was there, I would frown if not. Again, intially I really exaggerated the facial expressions, and even nodded my head yes or shook it no along with the expression, but then scaled that back as his competence with that type of activity grew, until it was just a slight smile or a slight frown that held the information.

Coloring: I would draw a series of shapes on a piece of paper and lay out crayons in front of him (far apart at first, then closer as he became more competent). He would reference me to see which crayon to use (which one I was looking at), then would have to follow my gaze to figure out which shape I wanted him to color in.

Board game: I would set out a board with dots on it (at first just a few dots spaced very far apart, but increasing numbers and closeness as he became more competent), then laid out a series of items in front of him (always something different -- plastic fruit, wood blocks, coins, straws, small rocks, little people figures, wooden train cars). As in the coloring activity, he would have to reference me for which item to pick up, and on which dot to place it.

Building games: I would set out a series of building materials (again, something different each time -- train tracks, legos, blocks, etc) and he would have to reference me to see which items to select and where to put them.

Feeding the cats (dogs, sheep, goats, ponies...): Jacob would fill a scoop with food, then have to reference me to figure out which bowl/bucket to pour it into.

Sorting laundry: I would make a couple piles of laundry, and Jacob would have to reference me as to which pile to choose an item from. Or I would have multiple laundry baskets, and he'd have to reference me as to which basket to throw an item from a mixed pile into.

Folding laundry: Same sort of thing, only I'd fold the clean laundry and hand it to him, at which time he'd reference me to see what pile to stack the item on.

Pick up: My favorite household activity, as the variation is already built in (the room is always cluttered by something different in different locations, and everything went in different types of boxes/bins). I would set out the bins and Jacob would reference me as to which toy to pick up off the floor, and which bin to put it in.

Cookie making: We used the pre-cut shapes type cookies, I started by handing him a raw cookie, and then he'd have to reference me as to where on the cookie sheet to place it. Eventually, I was handing him the entire sheet of cookie dough, and he was referencing me as to which cookie to select next. By that time, he'd already learned the correct location of where to place cookies on a cookie sheet, so his "need" to reference me was eliminated, hence we stopped "working" on that, as it made no sense to do that. Same thing happened with sorting laundry eventually -- he knew that the whites went in one and the darks in another, so stopped having a "need" to reference me, so I had to move on to other activties instead to work on referencing, although we did still use laundry sorting for other things (like master/apprentice work and regulation, and Stage 3 and 4 objective, when we got there).

Scrapbooking: I would scaffold this by cutting out pictures and pasting them onto colorful cut-out backgrounds, then I would apply paste, and hand it to Jacob, who would reference me as to where on the page to stick it.

We were still doing the above activities in the undistracting room. But by the end of working on Stage 2 (as seen in the photo), Jacob was able to attend to activities in the rest of the house in general, so I was able to start incorporating more "lifestyle" type activties (i.e., RDI intertwined throughout normal household activities and chores). This came at a good time for us, just as I headed off to a 2-day RDI presentation by Dr. Gutstein, and came home with the motivation to kick our RDI lifestyle program up a notch. More on that in another post! 

a post about nothing

Ok, so this is a post about nothing. Sort of think of it as my "Sienfeld" entry. I needed to get in a post for today to stay current with the November blogging post-a-day thingy. (NaBloPoMo - O So Lo Mi Oh -- oh woe is mo. Or something like that.) But I don't have time to write anything with actual CONTENT, as the kids have recently discovered our copies of the original Star Wars trilogy and after watching the original Episode IV for the last week, are bugging me to watch The Empire Strikes Back. And, well, it's been a lot of years since I've watched it and have a hankerin' to see it again myself. (If memory serves me correctly, I saw it about a dozen times when it was originally in the theaters....)

So, my apologies, but hey, the rules are that you must POST every day, not that you must post something worth reading! :-/~