RDI update

Many of you have asked how things are going with Ben and RDI. I've been kind of stuck searching for a direct answer for that question. I'm fairly sure most people would just like to hear "great!" or "doing fine!" as a reply, but that would be a silly expectation when the person you've asked is ME.

There are stages in RDI. Ben is in Stage 1. This might be helpful information if development happened in a vacuum and progressed strictly linearly without other details mucking up the water. As with most kids on the Spectrum, Ben has "splinter skills"--things he's really good at and are developmentally appropriate (or above) for his age--right there along with his deficits. It makes chronological, linear progression sort of difficult to assess. And, you know what? I *like* that!

This is not a "one size fits all" deal here. RDI helps us help BEN. With all the detail-mucking bits and pieces and a couple of siblings thrown in for fun. It's really been a mind-shifting sort of experience for Mark and I. And it continues. We're learning to talk less and listen more--being *mindful* of each moment and slowing down to appreciate, evaluate, give opportunities.

Okay, here's an example of something we're...I don't want to say "working on", as it's not like an isolated 'skill'...let's say "giving focus to". 'Eye contact' is something many traditional therapies for children with autism have as a big number one goal. And many children with autism can learn/be trained to give eye contact when requested ("look at me" "eyes on me") and some even can learn which social contexts require eye contact and will do it at the appropriate times. What most of these children will *not* learn by meeting this skill specific goal, is WHY people look at each other when they interact.

RDI examines this in a much deeper, more meaningful way. It recognizes and appreciates the important piece of eye contact is not the act of looking, but the art of connecting. Dr. Gutstein calls it "experience sharing". Looking at others' faces is not just 'polite' or part of social conventions, it provides INFORMATION. It conveys agreement, disagreement, surprise, joy, anger, wonder, sympathy, interest, determination, distaste, silliness, affection, love etc. etc. etc. Knowing the names of these emotions is not important, though. The important part is that by looking at each other (RDI calls this "referencing"), we can connect.

So, Mark and I provide as many opportunities for Ben to reference us for information as we can think of. Ben's a great helper and loves to do "grown up" jobs like sorting the laundry, putting away the dishes, etc. He also loves turn-taking, one-on-one games. These have turned out to be excellent times for us to *stop talking* (hard for me!) and provide information through our faces and/or body language. So, instead of saying "not there" when Ben tries to put the sock in the shirt pile, I might gasp, wave my hand, or shake my head vigorously so he'll check out my face for more information. I might pause mid-sentence or start to stutter as another way to invite a look. Mark has this whole non-verbal routine down with Ben turning on and off the water for him while he shaves. It has been amazing. Without any direct 'teaching' of this, Ben has figured out the value of eye contact and social referencing!

We are simultaneously "giving focus to" several different goals other than experience sharing and social referencing with our complex little dude. And each goal builds on the others, of course. So, Ben will eventually understand how to regain someone's attention, reestablish a connection that's lost, repair a conversation breakdown, and other subtleties of interaction that we all take for granted. And all we're doing is providing the opportunities and environment for his brain to take it in. It sounds so simple, and according to our consultant, it's something we've been doing naturally all along, but there is worth in KNOWING and really understanding the innards of why and how. Learning it together has been really good for Mark and I, and having a common "language" to talk about it is something I hadn't expected to be so valuable.

We're at the very beginning of this journey, of course, with a long road ahead, but so far, we're really enjoying it. And it ought to be that way, don't you think? Parenting mindfully *and* joyfully?--um, yeah, keep me signed me up for that.

On the Spectrum

This is Ben. He is 3 and 3 quarter years old. He is a big brother. He loves cars and trucks. He enjoys music and singing (lately, the Beatles.) And he has an autism spectrum disorder.

Okay, so that's how I originally was going to start this post. But, seriously. Over-the-top dramatic is just not my thing. I mean, hey, I can *do* dramatic, but then that's all it is--drama--not the real thing. And Ben is absolutely the real thing. He's not dying of malaria and in need of your help. (Just pennies a day can feed his whole village!) He's not pathetic nor requiring your sympathy. He's just a guy with some incomplete, wayward neural pathways. You might call it 'neurologically atypical'.

What used to be just "autism" is now ASD. The spectrum refers to the wide and varied ways the Big A can effect a person. Some people with ASD have no verbal language, others talk non-stop. Some are "locked in their own world" while others are very social. Whatever "symptom" you can describe in one person, can be demonstrated with the opposite in another. With such variance you might think that Autism is just a throw-away category for what would otherwise be called "quirky" or "delayed" or "we don't have a name for that, let's check this box". And yet. Once you have a little bit of experience with someone with this diagnosis, you can recognize it and call it out in another almost immediately.

As a teacher I never could quite put my finger on what it was that made it so clear when a child walked in the room that they were, without a doubt, On the Spectrum. Whatever it was, I couldn't just claim it as my "special gift" for long-range, armchair dignosis, as others in my field (early childhood intervention we're talking here, so teachers, therapists, social workers, etc.) could see it, too. It's how "On the Spectrum" came to be (at least, how it did in my world). It was a description of the indescribable. A label for the unlabelable (not a word, I'm sure, but you know what I mean). "On the Spectrum" was a way to categorize a collection of symptoms or behaviors that were not necessarily always present, nor did they look exactly the same from one person to the next. It wasn't and isn't a catch-all, though. There are definite "traits" or similarities among behaviors that are a clear indicator that something, some things, are *missing*.

And that, right there, is the crux of Autism Spectrum Disorder.

The "what's missing" is what I know now as the "core deficits" of Autism, as defined by Dr. Steven Gutstein, the founder of Relationship Development Intervention or RDI. The deficits are the same for people across the spectrum, even if their "symptoms" look completely different. Rigid thinking, aversion to change, inability to understand other's perspectives, failure to empathize, and absolute, "black and white thinking" are the things I couldn't put my finger on. It's not that I didn't know students that were lacking in these areas, I did. I never put them all together and realized these were issues for *all* of the kids with autism I knew. As I said before, they don't look the same from one person to the next--one person's shy, withdrawn behavior is another's aggressive lashing out is another's echolaic language and repetitive play...

The problem with school and special education school, especially, is that so much time is spent on BEHAVIOR. Managing, controlling, planning, shaping, and correcting. Whatever B.F. Skinner may say, people are made up of more good stuff than just how they respond to stimulus 'x'. The important part of what's behind the behavior, or what causes it gets glossed over in favor of the more pressing issue of MAKING IT STOP or making it happen RIGHT NOW BECAUSE I SAID SO. Skinner's operant conditioning experiments with rats, levers and pellets of food never sat well with me as being appropriately applied to human beings. People are just way more complex than that.

My distrust of Behaviorism (technically, Radical Behaviorism) did not bode well for finding early intervention services for Ben. I simply refused to hand him over to therapists or teachers who would "reward" his developmental gains with skittles and stickers, or expose him to continuous loops of "good job!" And preschool? Let's just say being on the other side of the desk, per se, has given me a whole new perspective on how I feel about small children with social deficits being thrown into a large group of peers to "learn social skills". It's far more important to me that Ben learn about relationships with the people he already has a connection with, people who accept and love him--his family. He has plenty of time to learn how to develop relationships with strangers and frankly, I don't believe you can do the latter well without the framework and foundation of the former.

Enter RDI. A brief stroll through the website was like a breath of fresh air. The "program" is family-based. The principles are squarely based on current brain research and the goal is not for children to learn to adapt, to learn "skills" for survival in a world that is forever changing the rules on them, but for REMEDIATION. That's right. Going back and "doing over" what was missed in the first go-around in development. But the best part is 'how' this is done. It's not with skills and drills, artificial "reinforcements", or within an unfamiliar environment (which then, has to be transferred to other settings or "generalized"). RDI takes place in our home and is facilitated by US (Mark and I). The developmental goals we have for Ben will be fulfilled within our daily routines. You can't get a more natural setting than our home, nor does "rapport" need to be established as we are already The Most Important People in his little life. There is an entire Operating System in place chock full of information in multiple media forms--print, video, podcasts, online community, scheduled chats with Dr. Gutstein himself, webinars (that's an electronic seminar), access to the thousands of goals and objectives that make up the developmental steps for filling in those core deficits... And that's just the beginning. Our consultant, April, provides ongoing support and guidance, as well as performing Ben's initial evaluation/assessment.

The focus on attachment and connection in RDI speaks to my core. The control freak in me is also very pleased to be "in charge". God bless the Internet for offering the opportunities of this program to whomever has access. RDI was not widely available just ten years ago and mere serendipity brought it into my sightline. Building new neural pathways is a challenge we are looking forward to. We're excited and optimistic for positive changes in our Ben. We'll begin in earnest after Ben's initial evaluation/assessment at the end of March.

This post is a lengthy one and I thank you for reading along.

As we're perched on the cusp of this new journey, documentation seemed in order. I'll keep you posted.