spotlighting

Spotlighting is a very important part of the RDI process. This is something that you do that helps the child encode the important part of an experience. (The important part being something that matches your current RDI obejctives.) A hesitation in your speaking, stuttering your words, gasping, clearing your throat, a smile, an excited squeal -- any of these can be spotlighting. So, for example, if I wanted to spotlight a shared gaze, I might freeze my face in a big smile for a second or two and take a quick breath before continuing on with whatever it is that we're doing.

Here's a real-life example of how I spotlighted a regulation (R-C-R) activity with Jacob. I would sing the row-row-row-your-boat song, sitting across from Jacob and pulling him towards me, then letting him pull me back towards him. I would occassionally toss in a very slight variation (challenge), like raising my hands while I pulled him towards me. To spotlight the change (challenge) I would pause the action for a second with an anticipatory look on my face, then continue. That would become our new pattern. Then after a few rounds of doing that, I would add another slight variation (challenge), like raising one hand higher than the other, or pulling him more with one hand than the other, or squeezing his hands while I pulled, etc. Each time I added the challenge, I would spotlight it the first time I did it. This way he saw the challenge as the important part of the activity.

Sometimes the challenge was too much for him and he started melting down. When that happened I immediately returned to the regulation pattern we had last used and kept that up until he settled in again before adding another challenge. I definitely found that there were times that he was more open to doing these sorts of activities, and times that would foster more meltdowns. First thing in the morning after waking, late in the afternoon, and before bedtime were all pretty awful times to try to do any sort of organized activity. Mid-morning, early afternoon, and after dinner were good times to work on focused activities with him, as he was more attentive and emotionally stable during those periods. It would seem to make sense that when a child is hungry or tired would not be a good time to try to get anything accomplished, and kids with Autism are no different in that department! 

Jacob's 4th birthday

Here's Jacob on his 4th birthday, in the fall of 2004. At this point in our RDI program we were working to decrease the imperitive language we used with him, and were trying to incorporate more declarative language and non-verbal language. We had made a few attempts at working on Stage 1 objectives, with no luck, because we had yet to discover the importance of Regulation. In the coming month, we discovered the key to our road block -- regulation -- and how to work on that with Jacob, which I've already discussed.

By the way, at this point (age 4) Jacob was reading pretty much anything he picked up. He would have been reading a full year earlier, but he got distracted by phonics (quite accidentally, and as a direct result of the Between The Lions public TV program). We're quite grateful for that distraction for him, because at 3 he was no where near ready to understand what he was reading. By 4, he was pretty much understanding what he read, so long as it was age-appropriate. Of course, if he picked up the New York times and started reading it (which he would happily do), he certainly didn't understand that. We made a real effot to NOT give him access to items that were beyond his comprehension, in an attempt to try to keep his comprehension at the same pace as his reading ability. But there was no way to stop him from reading altogether -- billboards, street signs, junk mail -- words were everwhere. So the best we could do was to try to keep the majority of his access within the realm of his being able to understand it.

This early ability to read (and write, which was coming right along with the reading, but a bit slower since he was having some difficulty holding a writing utensil) pegged him squarely into the Hyperlexia category. This is yet another diagnosis, not neccessarily on the spectrum of Autism disorders, as reportedly there are Hyperlexic children that are not Autistic, but the two do seem to go hand-in-hand in many cases. 

worry and absorbtion

Where DID that woman who was writing about Autism and RDI go? I can hear the head scratches....

Well, I've been a little absorbed with Jaocb's pony's recent problems. He has bene dealing with a bout of accute lamitis, which is a serious systemic problem resulting in disasterously bad foot problems known as Founder. Well, not ALL horses with lamitis end up with Founder. Just the unlucky ones. Or the ones who are neglected. Or the ones whose owners were led down the primrose path by their vets and didn't start treating them soon enough. Our case is the latter.

If you want to read about the ins and outs of what we're dealing with, I posted about it on my other blog (which is about the other 90% of my life that isn't wrapped up in Autism). Please feel free to go to http://alongthecrookedpath.blogspot.com/2006/08/foundering-and-floundering.html and read all about it.

In the meantime, I'll try to find a few minutes somewhere today to post some more here about RDI. When I'm worried about something I tend to get a little intense about it (not that any of you reading this would believe that!). So I apologize for the interuption, and hope to get back on track with this blog soon! 

non-verbal communication

As I mentioned in my last post, maybe this should have come before my post on declarative language. Because in typical child development, kids become experts in non-verbal communication long before they learn any words. Think about a baby crying to express it's needs, learning to point at the things they want. But it goes way beyond that -- even at a really young age, they are starting to learn to read the human face, expressions, body language (reaching up to be picked up, knowing that when Mom reaches down they are going to be picked up). They begin looking to parents for comfort when they are stressed. They are soothed by Mom's expression long before she bends over to lift them, as they know that the look of sympathy and support is followed by the physical comfort. You'll note that I am NOT talking about sign language or PECS (those would be two examples of other distinct types of communication). I'm talking about the normal non-verbal language that exists between typical people, between and around the verbal stuff.

The significance of non-verbal communication can be clearly seen when a young child visiting or relocated from another country arrives on a local playground. They don't speak the native language, yet in just a short time they are socially navigating their way into play with the other kids. Smiles, nods, pointing, general body language, laughing -- these are a universal language, the spoken word is much less important.

Why is it, then, that so many intervention programs for kids with Autism focus on spoken language without concentrating on non-verbal communication first? Shouldn't non-verbal come first in a program before verbal? What is the fall-out of teaching words without first teaching an understanding of non-verbals?

So even more important than changing your style of verbal communication with your child with Autism to 80% declaratives/20% imperatives is to cut out as much spoken language as you can and concentrate on teaching them how to understand and communicate in non-verbals.

For us, that meant stopping a lot of the verbal language that naturally flows from my mouth. The Map Man is naturally less verbal than I am, so it wasn't as huge a task for him. For me it was a mountain. Fortunately, all that time sitting on playgrounds waiting for Jacob to make his next move over the prior couple of years had taught me patience and persistance and how to keep my mouth shut (because throwing a bunch of verbal stimulation at him only complicated things and drew out the whole process to a painfully slow pace).

So, instead of asking him if he wanted fruit loops for breakfast, I would hold out a box with a questioning look on my face. Initially, I had to clear my throat to spotlight (another RDI term! Note to self -- I must write a post on Spotlighting!) that there was a reason to look at me. I also had to pretty much get right in his face with the box in the very beginning of this, wave it around a bit, make "huh? huh?" noises, etc. But eventually he'd notice me dancing around with the box of Fruit Loops and either excitedly yell "yes! Fruit Loops!" or burst into tears and scream "no no no no!". Either way, we had communication!

Slowly over time, I didn't need to be as dramatic about it. In fact, once we got a couple stages into RDI, he pretty much had figured out that my face and body had valuable information to convey, and he was tuned in to see what it was. AND, he figured out that he too could communicate with a smile, a gesture, a nod, a frown. A lot of the activities I did with him in the early stages of RDI (which I'll get into details about when I get through all this basic RDI principles jazz) involved only (or at least mostly) non-verbal communication.

So talking less is definitely one of the things I'd reccommend trying out with a child with Autism, though you can't just stop talking and leave them hanging -- you need to do all you can to make sure they have a chance to understand what non-verbals are about. 

declarative language

Actually, the term NOW being used by Dr. Gutstein is Experience-Sharing Communication. He changed it due to too many people misinterpreting what declarative language is supposed to be. I guess there were a lot of folks who thought that just because they weren't asking direct questions, they were communicating with their child the way Dr. G reccommended. When really, declarative language is about making observations and comments that do not require a response -- in other words, sharing an experience rather than looking for an answer.

In life, most 'normal' (being a loose term for average) people speak with other people in a manner that is pretty much 80% declarative and 20% imperitive. You can't get through life without some imperitives -- "There's a fire -- get out!" is a pretty good example. But even in the course of everyday living, you need to use those imperitives a bit. "What do you want for dinner?" "It's bedtime." "Cream or sugar?" But the rest of the time, we talk in a declarative manner, "What a beautiful morning!" "I had the weirdest dream." "Wow, this coffee tastes like heaven."

However, for some reason, there is a tendency to speak with children -- especially special needs children -- in a most imperitive manner. "Did you hear me?" "Don't touch that." "Come over here right now." There's the interegation: "How was your day?" "What did you do at school today?" "Did you see Mrs. Sonso?" "Wash your hands", and the worse offender of all, the quiz: "What color is this flower?", despite the fact that the child has known his colors for the past 2 years.

One of the first exercises when starting RDI is to think and speak much more declaratively. Drop the quizzing and the grilling for responses. Stop expecting responses at all. Who wants to respond when they are being put on the spot? Instead, speak in an experience-sharing manner with your child. Declarative communication invites the other person to partipate in a shared experience, rather than demanding a response. So the rule of thumb is that you make a statement about something "Oh, my, what a gorgeous day!" and then wait 45 seconds to see if the child wants to add something. If so, great. If not, that's OK too -- there is no response required, or even sought after, you are just sharing something with them. After the 45 seconds, you can make another statement. Or not. "I went to the grocery store today." 45 more seconds. Maybe a response. Maybe not. Doesn't matter. You're communicating with your child, and once they realize that they are not REQUIRED to respond to you, they will start desiring to communicate back.

Now, that all sounds fine and well, but I'm here to say that it's a pretty big leap of faith when the only details you get of your child's day at school comes from your daily interogation on the car ride home. To sooth my own curious nature, I started sending a polaroid camera to school, and asked the teachers in Jacob's room to take two photos a day of something that Jacob did that day, so that at least I could get a glimpse at the day. The teacher also agreed to chat with me breifly when I picked him up just so that I would know a tidbit or two from what went on in the 2 1/2 hours a day that my child was completely out of my realm. With those mommy-compensations in place, I took the plunge and stopped the 10-minute-daily-grilling session and just made happy declarative statements like "I'm so happy to see you!" or "I missed you while you were at school!" or "I'll bet you had a GREAT day today!" or "I saw you going down the tunnel slide on the playground!"

For the first couple of weeks, I got nothing in response, other than an occassional "yeah" or "oh". Great, I thought, this is no better than the "yes" and "no" responses I'd gotten from the grilling sessions, and at least then I had some idea as to whether or not he'd seen his speech therapist that day. But slowly, unfolding like the petals of a new flower, his conversational desire began to reveal itself. "Today is Monday, I think you have music on Mondays" I would say. "Yes, we sang Itsy Bitsy Spider" (followed by a rousing rendition). "We went to Dunkin Donuts this morning for snack" I'd offer. "I ate cookies. I sat with Nathan." It got better and better throughout the weeks, and within a couple months, he was so bursting with things to share about school, that it sometimes took me half an hour to strap him into his car seat because he was sharing all the details of his day.

The photos ended up being a HUGE boon -- not only did I get to see small glimpses into his day, but he would look at the photos with me and describe what was going on in them. It was so successful, that we began doing it in the reverse order -- I'd send in photos from home with him and his SLP would look at them with Jacob and he's share things with her about our life at home. We exchanged the photos in a little photo albumn that Jacob carried around in his backpack with him, called "Jacob's Episodic Memory Albumn" (Episodic Memory -- autobiographical memory -- being one of the deficits of people with Autism and something that we target with RDI), complete with rules of how to talk with Jacob about the photos in a declarative manner (examples and all). We shared this not only with his teachers and professionals, but also family members and friends and basically anyone we could think to hand it to.

My advice to anyone with a child on the spectrum who has gotten this far into reading my blog, whether or not you feel like RDI is something you might want to pursue, try changing your communication style with your child to 80% declaratives. This ONE thing caused such an enormous change in Jacob, and has undoubtably been the single most effective thing we've done with him. He went from a child with 0% desire to communicate (his language was 99% scripts and 1% imperitive demands) to a child with a huge desire to truly communicate with us, in a matter of a few months. His language was (and still is!) an enormous mess, as he had all that speaking in place before learning how to even communicate with non-verbal language (which will be the topic of my next post -- now that I think about it, it probably should have come before this one....ah well), so it's been a long road for him to try to figure out how to put sentences together properly, speed up his word retreival ability, and learn how to convey a thought so that the receiver understands the intent. But I can still feel the thrill of my child actually wanting to share a moment from his day with me for the first time! 

slowing down

One of the very first reccomendations when starting an RDI program is Slowing Down. You need to get yourself out of "crisis mode" and start taking things one step (one teeny tiny baby step) at a time in order to start making any progress with anything.

Part of this slowing down is dumping other therapies/services, which is VERY hard for parents to do. Afterall, all we ever hear from anyone in the field of Autism is how we have to address this, that, and everything else before some critical age after which the child is deemed eternally hopeless and doomed to a life of isolation and agony. I meet SO many parents that buy into this thought, and who chase the ever-dangling carrot of possible cures, running from therapy to therapy, hoping that this next one, this next session, this next thing will be the cure that removes Autism from their child like a cloak.

Now, I agree, sometimes someone tries something that does seem to magically remove their child's Autism. I will counter that I think in that case, it wasn't really Autism, but rather some process that was mimicking Autism's symptoms. Severe food allergies, allergic reactions to vaccines, heavy metal poisoning, severe gut issues -- these are all things that can produce a set of symptoms that look a lot like Autism. But is it really Autism? If the child suddenly starts acting typical immediately after removing the causative agent, then I don't think it possibly ever could have been Autism. Autism is a divergence in pathways in the brain -- even if you were to remove the orginal thing that cause the brain to start developing in the wrong way, those neural connections are already wrong. They need to be pushed back onto the right path and rebuilt in the right direction in order for the child to slowly start behaving less Autistic. So I don't think you can "cure" Autism (not in that way at least) -- but I do think there are cures for some of the disorders that mimic Autism. But it sure seems like those "cures" are extremely rare.

And I guess parents want to hope that that rare case is going to be THEIR child. And who can blame them for hoping? So they run around exhausting themselves, their child, their family, and their finances hoping for the magic bullet that "fixes" their child. And in the vast majority of cases, they just never find it, because, well, Autism is not curable. If only they could slow down and put their efforts and energy into the long road to remediation. I wish I could duct tape them to a chair and brainwash them into "getting it". But I think it's something that you have to "come" to when you are ready.

First, you need to mourn, and then move beyond your greif. While you are still greiving, I don't think it does you any good to start ANYTHING. It IS a big deal that your child is not "perfect". It IS a big deal that you are going to have to dedicate pretty much every waking minute to Autism for the next who-knows-how-many-years. Dr. Gutstein often says that the road to remediation is a marathon -- you need to learn how to pace yourself and celebrate the little milestones along the way, and you need to PREPARE for the journey.

Next, you need to take a good hard look at and prioritize the therapies that make sense to you. Every child is unique, and so some need more or different therapies to address co-occuring conditions in addition to Autism, some of which may actually present more of a current challenge than the Autism itself. If you've got a kid with such significant physical impairments that they can not physically attend to you, then that needs to be addressed first, or at least with equal importance. If you've got a child with a Seizure disorder, that needs to be regulated first. But for the vast majority of kids with ASD, addressing Autism itself is going to be the top priority and the thing that is going to make progress in other areas more doable. So I put RDI at the top of our priority list. And RDI was enough for quite awhile for us -- we fooled around with Speech and Launguage Therapy, but discovered that RDI was having a bigger positive impact on Jacob's language than SLT was, so we eventually dumped that too. We recently added Sensory Integration back in, but that's after making quite a big of progress with RDI, and finding that Jacob's sensory issues are currently a bigger road block than his Autism. (In fact, at the present time, nearly 2 years into RDI, the vast majority of strangers who meet him on the street won't believe me if I tell them he has Autism. Trust me, we still have a LONG way to go in the remediation process, but even after just 2 years, he's pretty much undistinguishable from typical kids in a casual situation.)

Slowing down also means cutting out a lot of the OTHER stuff we do with our kids. Dance classes, Karate, playdates, and even school. Dragging our poor ASD kids around from class to class just is not in their best interest. Simplifying their schedule and giving them time to process transitions and their daily rhythms is a big part of learning to live the RDI lifestyle. A harried schedule makes just about anyone nuts, but it's particularly hard on a child with ASD.

And then there's slowing down your actual communication with your child. In fact, cutting out pretty much all of the verbal garbage is a good place to start. Learn to communicate with non-verbals, the way typical babies first learn to communicate, long before they have the ability to speak. Point to indicate things, smile to show your pleasure, frown to slow your displeasure. And most importantly, when you DO need to speak, do so slowly, with a minimum of words, and in an Experience-Sharing fashion. Limit prompting and commanding/demanding/requesting -- stop TRYING to get your kid to respond to you. Instead, point out interesting things. "oh look, there's a Robin!" Then wait and give your child time to respond before saying anything else. A common suggested amount of time is about 45 seconds. This gives the ASD child, who has a much slower processing time, a chance to think about and formulate a response. If they don't respond, you could make another statement "I love the orange feathers on his chest!" Or, NOT. It's not about getting your child to respond. It's about modeling experience sharing and talking to them like they are another human being. Because they ARE -- they are not a dog to be commanded around, nor are they an answer box to be quizzed. And more than modeling it, it is actually about EXPERIENCE SHARING with your child. No response required.

All that said, slowing down was one of my hardest objectives, and I'm still struggling with it. Not slowing down Jacob's or my family's life, which I think I've been pretty successful at, not slowing down my communicating style, which I've pretty much mastered (at least around Jacob! Most other people find that hard to believe about me!). My struggle has been slowing down my own hectic, out of control schedule. I have to work, I work too many hours, in addition I am very NOT autistic myself, so I have quite an active social life and many interests and hobbies. I thrive on being overscheduled, and have been this way my entire life. Yet, on a base level, I truly DO desire to slow down. I just don't know HOW or WHAT to cut out of my schedule. I'm a work in progress. Someday my goal is to just sit on my front steps and watch the sun set with no other agenda. Stay tuned to see if I ever get there.... 

RDI 101

Ok, I realized after I posted yesterday's offering that I need to step back a few steps and explain what RDI actually is. Well, it's Relationship Devleopment Intervention, an Autism Remediation program developed by Dr. Steven Gutstein and Dr. Rachelle Sheely, the dynamic duo that heads up the Connections Center in Houston, Texas. It's only been "around" for less than a decade, but it's growing by leaps and bounds because, well, it WORKS.

It is a parent-based program, facilitate through Certified Consultants (who have to go through rigorous training with continuous recertification requirements), who admister the RDA (Relationship Development Assessment), help the parents design a program based on their specific child's needs, and provide feedback via office visits or video tape reviews (many parents use consultants that are not even located in the same state as them).

The general premise is that by working on systematic objectives that target the core deficits of Autism, we can address the incorrect path the child's brain started down at the point where it first deviated, filling in the missing neural connections and developmental paths along the way. This sets the brain back onto the course it was meant to, and their brain (and hence their behavior and functioning) takes up a more natural pattern. And hence, Autism eventually becomes remediated, and the child begins acting more and more like a neuro-typical (NT) person (or my new favorite term, NA -- Not Autistic -- person).

The different between RDI and the other "Autism intervention" methods is that this is the only one that directly addresses and affects the core deficits. The rest of the programs teach compensating mechanisms and skills, so that the child can use their strengths to make their way in the world in a somewhat acceptable (to who???) manner. RDI actually addresses the deficits to fill in the missing pieces, rather than working on the strengths. (Why work on strengths? -- they are already good at that stuff! Like rote memory. I don't care that my 5 year old can name all the state capitols. I want him to have a real friend!)

RDI is all about improving quality of life. And just what IS quality of life for a person with Autism? Same as with any other person -- the ability to live on their own, to be able to obtain and maintain satisfying employment, to have reciprocal relationships with other humans, to marry and raise children (if that's what the person desires), to have a full, satisfying, happy life.

I'll add a couple of my own: To know who they are and have a real sense of self. To feel comfortable navigating in a dynamic world. To be able to choose what ever path they choose to follow. To dream of the future and have the abililty and desire to make those dreams come true.

I'll spend the next several days outlining some of the workings of the RDI program before I get back to Jacob's progression through it. 

I just thought I'd list some of the early regulation type activities I did with Jacob at the very start of our RDI program. Rocking was a big one, initially with him sitting in my lap facing away from me, and me humming (as he was intolerant of my singing at that point) and rocking him gently back and forth. I would hum an entire song verse while rocking in the same pattern, and then I would vary the pattern ever so slightly the next time (like rock a bit slower or a bit faster). If he got a little distressed but then settled, I'd continue like that for the verse, then make another slight change. If his distress escalated, I'd switch back to the intial regulatory rocking pattern. After a week or two of this, I was able to vary his position as well (sometimes facing towards me, sometimes cradles like a baby, sometimes on my lower legs rather than my lap, sometimes on my back "piggyback"). And then I was able to rock in different directions -- up and down, or back and forth, or around in circles, rather than just side-to-side. Eventually (in about a month) I was able to use typical lap-game songs, like "Trot trot to Boston" or "Ride a cock horse" or "Wheels on the bus" or "Little Red Wagon" that already had variety built in, and that provided opportunities to actually work on the Stage One "Emotion Sharing" RDI objectives.Another good regulatory activity for Jacob was walking. I would hold his hand and make a point of walking at a steady, rhythmic pace. After doing this for a certain distance, I would start adding a slight variation, whether to keep up the variation or drop back to the original pattern depended on his reaction as above. Variations I used were swinging our arms, squeezing his hand to the footsteps, walking a little faster or a little slower, taking larger or smaller steps, adding a sound effect to our walking (or counting, or saying the alphabet, etc), and when we got more advances, skipping or running or bouncing as we walked. This too turned into an activity where we were able to work on Stage One objectives, but I'll talk more about Stage One in another post.Other types of regulatory activities included me handing Jacob objects and him handing them back to me. So passing a buidling block to each other. Rolling a ball back and forth (tho the distance had to be quite close, otherwise there was too much potential for variation).Another form we did of this was to work together to move bigger objects. So he'd grab one side of a pillow while I grabbed the other and we'd put it on the couch, and repeat with an entire pile of pillows. Feeding the cats -- I'd fill the scoop with cat food and hand it to him, he'd dump it in the cat bowl.All of these basic regulatory patterns eventually turned into more sopshticated activities that worked on actual RDI objectives. But until Jacob got comfortable with just the idea of regulation, we weren't going to be able to do any of the more sophisticated stuff. For now, the two of us loading a bin with blocks one at a time was enough of a challenge. We spent the end of October and the beginning of November building his competence with regulatory patterns.

starting down the RDI road; in desperate need of a roadmap

So finally we come to the part of the blog that I really want to get working on -- our RDI program! Whew, I wasn't sure we were going to make it here, some of that back-story was starting to make me feel like I had pulled off to the side of the road and gotten trapped in a tar-pit like some modern-day Mammoth. But now that I'm done being bogged down by ancient history, I can talk about the next two years of our life and get us up to date some time before the next ice age.

I would like to say that we jumped into RDI with both feet and competently started a beautiful water ballet, complete with graceful music and a cheering crowd. The reality was more like a walrus drowning. I read every bit of material on the Connections Center website (www.rdiconnect.com), I asked questions on the parent message boards, I particpated in weekly live chats, I joined e-mail lists. Yet I couldn't quite seem to get my head around this whole RDI concept. The appointment for our RDA (Relationship Development Assessement) with our RDI Program Certified Consultant was still 6 months away. I certainly wasn't going to sit back and wait, so I persisted in reading and participating all I could via the internet.

My first major obstacle was the terminology. Now, I've always been a bit lingo-challenged anyway, but the terms the parents and program consultants were throwing around seemed like some sort of bizarre code. Or maybe a sick joke. Objectives, Framework, Scaffolding, Regulation (both the Self- and the Co- types), Stages, Levels, Declaratives, Imperatives, Appraisal, Intersubjectivity. Whah??? Someone finally did put up a list of definitions on the site, I like to think my incessant whining about it played a small part.

My next problem was that all of the "stage 1" (which was the supposed starting point for the vast majority of kids) ideas were WAYYYYYYYYYYYYYYY beyond Jacob's ability. I distinctly remember one point where someone suggested putting raisin eyes and nose on an apple. Without even trying it, I knew that Jacob would run screaming from the room, shut himself in his room, and not reappear for hours. (And even then probably avoid the kitchen for the next week.) I read about a month's worth of ideas, occassionally trying one or two to no avail, but mostly scratching my head over how to even START doing this.

Then I had the brilliant idea (seriously, I think a lightbulb went on over my head!) that maybe I just had to simplify everything to the extreme. If the exercise was rocking back and forth with variety, maybe I just had to rock STEADILY for awhile, then add the slightest little variation in (like rocking a bit slower or faster or more forward or hesitating a bit). Lo and behold, Jacob was able to tolerate this, and even started enjoying steady activties with very slight variation. And lo and behold, at about that same time, the founders of RDI came up with the concept of R-C-R (they actually called it R-D-R back then, but I'm going to use the more current term in hopes not to confuse anyone wandering down the road behind me, at least no more than neccessary). This stands for Regulation-Challenge-new Regulation, and describes the cycle of establishing a regulatory pattern (a pattern the child can recognize), then adding a slight challenge (a small variation), and then the child re-regulating themselves (accepting this variation as part of the new pattern). The idea is that the child builds competence with each successful R-C-R cycle they participate in with their parent. But the key to being able to do ANY of that is that first R -- helping the child to feel regulated in the first place. I envisioned all the lightbulbs lighting up in Houston the day that concept crossed the minds of the Connections Center folks!

With the concept of Regulation and R-C-R in my hip pocket, and a canteen of hope around my neck, we were ready to officially start down the road to Autism Remediation. We were on our way! One step at a time. 

Cranio-Sacral Therapy

'Round about the time Jacob started school, I found out about Cranio-Sacral Therapy. As I remember from my prenatal classes, babies' heads get slowly molded during labor thanks to these movable plates in their skull so that they can come out of their moms, and then the head slowly returns to it's proper position over the first week or so. The theory behind Cranio-Sacral therapy is that moms that have epidurals don't take labor/pushing at the proper pace, and the kid's head gets rammed repeated into her pelvic floor, locking up these plates. Since the heads don't mold (since they're locked up), some of those moms end up with C-sections, and the plates stayed locked up, putting pressure on certain parts of their brain (specifically the parts that cause symptoms of Autism) as they grow. Cranio-Sacral Therapists work to unlock those plates in the skull, removing the pressure and supposedly alleviating the signs of Autism.

Well, I had an epidural, and I had a C-section, and this all just made too much sense to me, and I figured it was worth a shot. So I started searching for a Cranio-Sacral Therapist. And actually located one in the next town, much to my amazement! I gave her a call and we chatted about Jacob and set up an appointment.

I was curious how this was going to even happen. I was bringing a child that hated doctor's offices and didn't tolerate strangers touching him (ESPECIALLY touching his head!), to a clinical setting so that a woman he didn't know could manipulate his skull. Good luck!

The day came, and he followed me into the office fairly cooperatively. He wanted no part of lying on the table (even sitting on the table was approaching his level of distress). I lay on the table next to him, and held him the best I could while she tried to work on him. It was a no-go. He screamed every time she put a hand on his head (she said that this was a symptom that there was something really wrong with his head -- I was less convinced, I felt it was the inevitable result of him feeling trapped and tortured). She ended up working on me instead.

We tried once more. This time, I had to carry him in and only made it as far as the waiting room, he refused to go any further. So he sat on my lap while she worked on me, and negative-stressed himself to sleep. She worked on him a bit while he slept.

I would have probably tried a few more sessions just to see if we made any progress, but I broke my ankle and was unable to carry him in the building, and he was unwilling to walk in on his own. Thus ended our attempt at Cranio-Sacral Therapy. I still think it's possible that he might benefit from it, but I'm not convinced enough to give something that he so obviously could not tolerate another shot. By the time my ankle was back to normal and it would have been a possibility, we were already starting to see some positive changes using RDI, so we decided to just go with that. 

school daze

Well, here's my little man all ready to go off to start school. Public school, no less. As a parent with a strong belief not only in homeschooling, but radical unschooling, this was possibly my most traumatic moment in our journey to date.

Fortunately, Jacob loved it. His teacher and classroom paraprofessionals were wonderful, his SLP was a dear, and the entire school (for the most part) bent over backwards for him. He was in a regular pre-K classroom, and although there were other kids with special needs there, he was the only child with Autism. (Due to the fact that all of the Autistic kids were usually shipped to the other side of town, where the elementary school was developing an Autism program, something we specifically did NOT want him in.) As a result, the professionals that worked with him had little to no experience working with a child with Autism. And we used that to our advantage -- we instructed them in how we wanted them to interact with him, how to manage his "special needs", and it forced them to keep us more informed than we would have been by professionals trained in working with Autistic kids. This was an ENORMOUS advantage as we started our RDI program, educating his educators right along with ourselves. His SLP even came to his RDA (Relationship Development Assessment) with us, at the invitation of our RDI program consultant.

So he attended school daily during regular class hours (8:10 to 10:50AM) and participated (as best he could) in the regular curriculum. He did have a twice-weekly pull-out for SLT, but even with that, most of the work the SLP did with him was in the regular classroom. The Map Man dropped him off in the morning on his way to work, and Zoo Boy and I picked him up at the end of his school day. On days that Zoo Boy fell asleep in the car, I would pull into the parking lot early to watch his session on the playground. The first few months I cringed as I watched him dance around the periphery of the activity, flapping his hands and spinning, as Autistic looking as could be. He also spent a couple of months hiding underneath his teacher's legs whenever the Kindergarteners came out to join the pre-K class. But I came to appreciate these moments as a comparison point when we started into our RDI program and started seeing the dramatic changes in Jacob right before our eyes. By the time we pulled Jacob from school (a year and a half later), he was a fully participating member of the class, in the center of all the play, looking as appropriate as any other child there. Nobody on the sidelines would have suspected him as having Autism, I'm sure of it. Well, unless they noticed he was wearing a diaper....

So, if he loved school, and was doing "well" there, and we were seeing progress with him, why did we pull him out? Well, I simply came to my senses. Once I saw what RDI could do for him, I wanted more time to work on it with him, and school was cutting deeply into our RDIable time. We had to get up, rush to get dressed and out of the house, then he was actually AT school for almost 3 hours, then we had to drive home, and then he needed a couple hours of "down time" to get over having to hold himself together at school. That pretty much shot the better part of the day. Plus, even his SLP told me that there wasn't much she could "do" for him, and that all the incredible improvement we'd been seeing with his language was due solely to RDI, not to anything she was doing with him. (In fact, she wasn't even doing SLT with him anymore, she was working on reading comprehension.) We were also desperately in need of good OT services, something that the school refused to give us, seeing as they had an OT on staff (albeit one that wasn't trained in Sensory Integration).

Sending him on to Kindergarten next year certainly made no sense whatsoever -- just as my child was starting to blossom socially, I didn't want someone (a teacher or some like person) stepping in and telling him not to talk to the kid next to him! So we initially decided to let him finish out his last year of pre-K, and then just not send him back the following year. But I ended up getting impatient with our slow RDI progress and I pulled him in April of this year. I don't think it's coincidence that the RDI stage we were working on and "stuck" in since the start of the school year was mastered within the first month of withdrawing him. He also started asking his first "why" questions, something the SLP had been trying to get him to do for the past year and a half. And not sending him to school freed up our schedule to pursue Sensory Integration Therapy with a fantastic private OT.

I don't think being in school was doing him any direct harm, but it certainly wasn't doing him much good. I could provide better playmate choices by selecting locations he'd meet up with a variety of developmental-stage-appropriate kids, as opposed to being forced into a classroom with the same 18 kids of like age. He was already way beyond his class in reading (around a 2nd grade level when we left school, even further along now) and math skills (can add and subtract strings of 3 -- maybe more, I've never tested it to find out). I didn't see any reason for him to be working on pre-reading and counting skills when what we needed to work on was Autism remediation! 

Sensory Integration

I had spent most of the summer of 2004 calling various leads for OTs with certification in Sensory Integration. Every one I spoke with either worked strictly for a school system (only for kids within that system), or for a comprehensive services group that would only accept clients (and to become a client you needed an evaluation from the Doctor(s) associated with that group, and as I previously mentioned, the wait time was anywhere from 18 months to 3 years). I went through spurts of calling, then would give myself a few weeks to recover, then start again.

From all that calling, there was just one OT who had said "if you really can't find anyone else to work with, call me back". I got around to finally calling her back towards the end of the summer. I almost sobbed at her about my complete inability to find anyone to work with. She took pity on me and agreed to come out to my house to help me establish a Sensory Integration program with Jacob that his school OT could take over. This was at no charge to us, since she worked for one of those services groups and her seeing me outside that group for a fee would be conflict of interest. I was SO grateful to her!

She spent about 2 hours with us, detailing the Wilbarger brushing protocol, discussing how I could make sure SI was addressed at school, and helping me think about the sensory diet (access to various materials to aid with SI) we already had at home. I felt pretty good about where we were at by the time she left, and started with the brushing protocol right away. Unfortunately, Jacob just could not tolerate that sort of touch -- I tried making my touch lighter and heavier, but eventually he would just run off screaming when he saw the brush. So I stopped. Maybe with more professional support we could have made it work, but after making a couple phone calls to her, I decided to just drop it -- the poor woman wasn't even getting paid for her time with me, and I felt too guilty to keep bugging her about it. And I foolishly thought he'd get what he needed in school (silly me!).

I presented her SI ideas to the OT at school the first week of school, and to her credit, she DID purchase a water table for Jacob's classroom. But that was the last we ever heard about sensory integration being used with him. So I gave up on trying to help him in that way, tho in my gut it felt wrong -- it certainly seemed to me that his Sensory problems were as significant as his Autism and language deficits. But of course, the school didn't do anything about that either....more on that next post!

We finally are having Sensory Integration addressed properly! Two years later, but still....he's finally in with a great Sensory Integration group and has a fabulous therapist who happily involves me in his program, and readily makes changes to keep what she's doing with him in an RDI context. I'll be writing more about it as we go along. 

home from Denver, back to blogging!

This interuption in my history lesson is courtesy of the First Annual RDI Parent's Conference, which was held in Denver over the past weekend. Two days of travel (one out and one back), three days of conference, and four nights of socializing with parents who are traveling the same road as us, have wiped me out. But I'm confident that a night's sleep will be rejuvinating and I'll be back to typing like mad at some point tomorrow. Now if I could just get off this computer and get to bed....

This photo is a recent one, taken at the same family reunion (but 2 years later) as where I first heard about RDI. I thought it was appropriate to post this photo at this time. Two years has made a world of difference for our whole family, thanks to RDI and Dr. Steve Gutstein's commitment to helping us parents help our children with Autism. I don't think I fully understood the depth of that commitment until this weekend. I am overwhelmed by his willingness to give so much of himself for something that only really benefits others. It certainly goes well beyond any business advantage for him. I am awed and deeply moved and eternally grateful.

a chorus of angels, AHHHHHHHHHHH!

Here we are, August 2004. This family portrait was taken at our Family Reunion, the very day I first heard of RDI. My cousin's wife, homeschooling mom and general hero of mine, whose middle child has Autism, had just discovered RDI and couldn't wait to tell me all about it. We talk for hours about Autism and RDI and I couldn't wait to get home and read all about it on the www.rdiconnect.com web page.

I started reading the website at about 10pm and finished about 2 weeks later, and don't think I slept much in between. It was as if the clouds had suddenly parted and there were rays of golden, hopeful sunshine raining down upon me. The fog that had shrouded my brain suddenly cleared and I could see the answers I was searching for clearly. A host of angels sang rounds of the "halleluiah chorus"!! (Or maybe I was hallucinating from lack of sleep....).

My excitement was interupted by finally getting an appointment with an OT trianed in Sensory Integration, followed by the start of school and all the adjustments that had to be made there. But when I finally got back to learning more about RDI toward the end of September, our lives would be forever changed for the better. 

pony love

As a person who had spent the better part of her youth obsessed with horses, when I started reading about Hippotherapy I knew I just HAD to get Jacob into a program. Then I checked into the cost -- and choked! We live on a farm, so we did the most logical thing. We bought Jacob a pony.

Actually, we bought him two. The first pony arrived in March and wasn't at all what I'd hoped she'd be. She was high strung and had very poor ground manners (meaning she'd just as soon stomp on you as hold still for brushing). I kept her a year anyway, and she really was nice to the kids when they were up on her back, but I was afraid she was going to hurt me (or worse, someone else) during her general care, so I ultimately sold her.

I was MUCH more careful the second time around. I spoke endlessly with the owner of the pony I was considering, and drove Jacob up to meet him. Jacob stepped in his stall, and the pony took a careful step forward and rested his chin on Jacob's shoulder. SOLD! A friend with a stock trailer drove up to fetch him home for me in June 2004.

Even without the benefit of a qualified PT to oversee our work, Jacob quickly became quite an accomplished little bareback rider. I can't say enough good things about owning this pony -- we now use the pony for OT and balance excercises while Jacob rides (reaching across his midline, etc), and we do brushing, feeding and caring for him with an RDI flair. (I have dreams of developing an RDI Riding program someday on our farm so that more kids can benefit from this sort of partnership with an equine. Fortunately, this little dude is only 6 yrs old, so he'll be around for a good long time. And I've already got another wonderful pony lined up when she retires from the lesson facility she works at.)

Jacob spent the summer riding ponies, playing with his dog, obsessing over playground equiptment, being exposed to as many different textures as I could think of, being wrapped up like a catapillar, and coming to realize that he not only didn't mind, but also sort of liked it, when I carried him around my sister's pool.

I spent the summer desperately searching for a Sensory Integration Therapist and dreading the start of school.

school evaluations

Our intial meeting with the school was uptight and formal, and never have The Map Man and I felt more like ADULTS having to deal with this situation. The first thing we did was assure the "team" that we did NOT want ABA services for Jacob. We could see that the Special Services Director from the district wanted to do backflips of joy over that, and suddenly the stiff, tense atmosphere dissipated and everyone relaxed. They outlined the plans -- 2 days of Psychological evaluations, 3 days of SLP evaluations, 1 day with the OT, and 3 days of classroom observation; one with the Psychologist, one with the OT, and one with the classroom teacher. We started the following week.

The psychological evaluations were a series of questionaires, a series of tests she did with him, and a big long checklist about what he can and can not do. Not surprisingly (to us anyway) he didn't fit the models very well. He was at age level on some things, above age level on others, and vastly below age level on others -- even items in the same "section" of her questionaire, making the results pretty much unreadable and ultimately useless. The final "test" she did with him was the CARS (which is an Autistism Rating Scale). Her results found him to have "severe autism" which made us all laugh. Well, not the Psychologist -- she wasn't particularly amused that none of her evaluation tools were useful. She suggested ABA as reccommended by our Developmental Pediatrician, having no idea what else to suggest. We just worked with the team leader (his SLP) to get her removed from his "team". We were successful.

The SLP evaluations were much more useful. The testing was a little grueling for Jacob, and we ended up spreading it out over the course of 5 days instead of the 3 it was originally scheduled for. In the end, we discovered that both his expressive and his receptive language was "severely impaired", being two full standard deviations below the norm for his age, or approximately 18 months to 2 years behind. His vocabulary and pronounciation was at age level. We thought the results of these test very accurately depicted Jacob's language abilities and delays, and we really connected with and liked the SLP (as did Jacob).

The OT's evaluation and classroom observations indicated a strong need for Sensory Integration Therapy, yet when the IEP meeting was actually held, no SI was offered. We asked about it repeatedly, and kept being met with an "we'll apply that as we feel it's neccessary" sort of response, yet it never did make it to the actual IEP reccommendations. The impression we got was that they felt he needed it, but that their OT wasn't able to provide an SI program, hence it was not going to be offered.

The results of the classroom observations were mixed. The phsychologist insisted that I leave Jacob, without giving him any notice I was leaving. He was understandably distressed when he realized I was gone, and did not recover well, something that could have been avoided if she had allowed me to tell him that I was just stepping out for a few minutes (I don't think he would have cared, he was quite involved with the story that was being read at the time). She of course chalked it up to seperation anxiety. (snort!) The other observation sessions went better, as I was allowed to stay in the classroom and watch from the periphery. He was there during a snacktime, where he contentedly ate the cookies I brought from home while sitting in an assigned seat, although he was oblivious to everything and everyone else around him. The other time was during their "centers" time, where the kids could move freely from activity to activity. He spent his entire time at the sand table, pouring sand through a funnel. A couple times kids tried to interact with him, he ignored them completely, except when one of the kids touched him (put her hand on his shoulder in a friendly way) and he came sreaming and crying over to me. He also had time on the playground, where he climbed up the same ladder and slid down the same slide until it was time to leave.

During our IEP meeting in May, the team reccommended placement in their Pre-K program for the fall (they reccommended the summer program too, but it was at a different school on the opposite side of town, with an entirely different staff, and we thought that any possible benefit would be negated due to stress. Besides, we had to get our heads wrapped around the fact that we were sending our child to school. And PUBLIC school, no less. At an age where we really felt he should be playing in unstructured situations rather than sitting in a classroom!) with 2 1/2 hrs of SLT a week, and 1 hr of OT a week. We swallowed hard and signed on the dotted line.

Jacob visited the classroom (with me) twice a week for the rest of the school year, coming in at the unstructured "centers" time, eating snack with the class, and playing on the playground for their reccess time. He loved the sand table, he loved eating cookies in the little chair, he loved playing on the playground. He was as ready for school as he ever would be.

skipping along, tra la, tra la

Jacob's 3rd birthday came and went. Christmas came and went. We twiddle our thumbs and patiently waited for his Autism Evaluation in January. That, too, came and went, and we had a diagnosis and a letter that we sent to the school district. More waiting and thumb-twiddling ensued.

I read all I could about Sensory Integration, as that seemed to be the single biggest problem we were dealing with -- just getting Jacob comfortable being in the world. I applied some of the techniques I read about, I provided various textures and surfaces for him to get used to, I arranged as much of a "sensory diet" for him as I could figure out on my own. I began rolling him up tightly in a sheet, turning him into a "catapillar". He loved this "game" and would thank me for leaving him wrapped up tight. 10 or 15 minutes later, he'd wriggle his way out. Then an hour later he was handing the sheet back to me, looking to be a catapillar again.

We discovered the Music Together program and immediately changed over from Kindermusik. The more relaxed, family atmosphere was a better fit for him, and he loved both the program and the instructor. I never had a problem getting him in the building, and we never had to leave the class screaming -- drastic constrast to the other program, where we spent more time coming and going than we actually did making music. The instuctor let him participate on the level he was comfortable with, and he has absolutely flourished in that program. (Currently, he's been invited to participate in their new program for 5-6 year olds that is being piloted at the music center we attend this fall -- he has become a full participating member of class since those early days of hiding in my lap.)

We continued with Gymboree classes at the same level we'd been at -- he pretty much ignored everything that was going on around him and particpated in his own obsessive activities. When spring and the good outdoor weather came, we finally dropped Gymboree once and for all, opting for (free!) outdoor playgrounds to work on his physical skills.

And we finally got a date for his school evaluations in March of 2004. He was to be evaluated by the school psychologist, the SLP, the OT, and his classroom teacher, and we were to fill out various information from other deparments (health, social services, etc). We held our breath and started bringing him for his "testing".