And Now for Something Completely Different!

I am out of crisis mode and into 2007! And to prove it I have had a date with my husband, gone out to dinner with a friend and started taking yoga again. All in one month! I have it in my head that this year will be a bit different than the last and so far I'm off to a good start.

I came to see that I was in crisis mode some time back when friend and fellow blogger, ThisMom, wrote a passage in one of her posts about how she had been feeling like she was in a state of constant emergency since the time of her son's diagnosis with Aspergers Syndrome. Yes, I thought, that is exactly how I felt. But I didn't quite know what to do about it either. A big part of my emotional state was tied up in not having a clear roadmap or plan when it came to what to do about Oliver's autism. And then there was the mythic, looming, magic, five-year mark, rapidly approaching, at which time his brain would suddenly become less agile, less capable of developing new pathways -- whatever that means. So there I was, the house was on fire, the clock was ticking and I was sitting on the floor of the room, the boy on my lap, smoke pouring in from all around, and it all depended on me but I was completely unable to focus and prioritize.

But gradually, things have changed. For one thing, begining RDI has given me a pretty good roadmap. And more importantly, I feel competent to use it to find our way. And competency is such a huge thing for all of us. Feeling competent is what allows us to keep finding the motivation to face that which challenges us. And although I love Oliver more than I could ever begin to describe, parenting him challenges me in ways that I never expected. And that frightened me more than anything because there were times when I honestly could not see that I was up to the challenges. But today, even in the face of all those challenges, I now find myself recounting to Nik all of our successes at the end of each day. With each success, my feelings of competency soar. And as I re-gain my competency as a parent, Oliver's trust in me is also growing. I see it everyday in willingness to try new things with me. Three months ago when I called Oliver's name he would literally run in the other direction. Now he runs to me. I don't feel like I'm in the midst of an emergency all the time anymore. Every day just seems normal. Ordinary almost.

But all of this is a process and even through we have made great strides in the past few months I know we still have some distance to travel. One of the things that remains very hard for me is looking into the future. Thinking about Oliver's future begs many questions that I'm just not sure I'm ready to look at squarely. My dearest hope is that I will one day be able to have a conversation with Oliver. But that might not happen. It is a struggle to maintain that hope and yet accept that conversational-style communication just might not be in the cards for us. But if it is, when might it be reasonable to think it might happen? In a year? Five? Twenty? I'm not yet willing to totally give up on verbal communication. But setting goals requires that we evaluate what we believe to be realisitic and it also requires that we maintain some sort of expectations about the future. If we don't believe that our goals are attainable then why set them? And so my goals tend to be very short-term. I know what I want to accomplish this week, this month. But it is as if my road-map is leading me over very rocky terrain and I still need to keep my eyes on the very next step. Maybe as I become more adept -- more competent -- I will be able to look up at the bigger picture. But I'm just not there yet.

But I AM taking Yoga every week. And after my first class on Sunday my muscles have been reminding me that stretching in new directions comes at a cost. I'm achey and sore but also pleasantly surprised that I could keep up with the class. And during that first class last week, the instructor offered up this: "All balance is a gift.

I'm not sure how to end this post, except with that thought. Balance is a gift. And if 2007 brings me nothing more than balance I will be happy.

Angry

OK, now I'm angry. Really angry at a person I've never met. Her name is Nicole Sperling and she has the by-line on an article picked up by Reuters about the showing of the autism documentary, Autism Every Day, at the Sundance Film Festival. Why am I so mad? Because the opening line of her article reads like this: "The horror films on display at the Sundance Film Festival are nothing compared to every parent's fear that their child could be diagnosed with the mysterious developmental disability called autism."

You know, receiving the dx of autism for your child would be a whole lot less difficult if the opening line of just about every news report about the subject didn't tell you how horrible autism is! Discovering that your child has autism is hard enough without misplaced analogies to horror films. No wonder there is so much fear and stigma out there. She isn't just reporting about it, she is perpetuating it.

Hey, Nicole! My son has autism. And there is nothing horrific about my life. In fact, there is a special kind of joy to it and I wouldn't trade it for anything.

About the RDA

Last week an RDI consultant came to our city to work with us over a three day period. During this initial assessment period she asked me to engage Oliver in a series of activities that are designed to determine where he is developmentally with regard to RDI stages and objectives. The idea behind RDI is that there are certain "Core Deficits" in all people with ASD. For whatever reason, there are certain fundamental developmental building blocks that people with ASD don't learn naturally -- these are the core deficits -- and they are essential for learning how to relate to other people successfully and to thrive in other dynamic situations. By addressing each of the core deficits in the order in which the traits are known to develop in typical children, it is believed that one can develop the skills that were missed along the way.

I could try to explain the theory in more detail but since I am new to this game I will leave it at that. If anyone is interested in learning more I would recommend the RDI website.

So, the results of the assessment were quite what I had guessed. Oliver is starting out in Stage One and our first objective is to increase facial gazing. He has come a long, long way since we started doing RDI informally back in October. He is now so willing to join me for activities. I no longer have to chase him down to do the simplest things. Our games now last for minutes, not seconds. But I'm still doing all of the work to keep things going. If I stop a game in the middle, Oliver will simply walk away rather than trying to keep it going. But that will come.

There were many things about the assessment that I expected. When activities were introduced I knew pretty much before we started if they would be successful or not. And usually I assumed they wouldn't be. But there was one very poignant moment for me. We had been playing together with a toy that Oliver found very engaging but it took two people to operate. After a certain amount of time the consultant asked me to stop playing and just sit there. I wasn't to speak or do anything unless directed to by Oliver. At this point I kind of held my breath. He really liked playing with that toy and the point of the activity was to see if he would try to initiate play with me. At first he kind of walked around, close to the toy, but not appearing to be taking any more interest in it. Then he picked it up and walked towards me. OK, I thought, You Go, Oliver! But instead of bringing it to me he just sat down with it on the bean bag chair opposite me. I felt my heart plummet. There he was, my own little boy, and he didn't even know how to engage me in something that I knew he really wanted.

Six months ago I think something like that would have really broken my heart. Yes, it still wounded me but not mortally. The reason being that now I really have hope and believe that he will learn how to do these things one day. He is delayed. But he will get there.

The other good thing about the RDA was that I learned how to refine some of the things I had been doing so that they will be more effective. It was nice that our consultant actually travelled to us because we spent a lot of time working around the house, doing the kinds of things that we normally do together, and she gave a lot of feedback as to how we might modify or add to things we were already doing. Another nice perk is that the other mother in my neighborhood who began RDI with her son last month joined us for an hour one day and we both picked the brain of our poor consultant. This was nice because even though her son is on stage two, we both needed clarification on some of the same issues and now I think we can offer each other even more support.

There are some other things that I have been thinking about since last week -- namely: how instructive it has been to watch myself interacting with Oliver on videotape. Also, why switching gears from crisis mode would be my New Year's resolution if I were to actually make resolutions. I don't because I can never manage to keep them. But I'm pretty good at keeping promises so that is my new promise to myself.

Also, and finally, (and this has nothing to do with RDI but maybe with getting out of the Crisis Mode) Nik and I are going out with friends on Friday night. Yeah, you heard me right. Believe it or not it has been more than two years since we've been out together! But I'm a little worried that I won't know what to talk about. Small talk? Lighthearted conversation? It has been so long! So if you happen to read this before Friday night and would care to help me out with some conversation starters I'd be much obliged.

HANDLE With Care

OK, I've just finished a bowl of vanilla ice cream and a bar of Hersey's Special Dark chocolate and I'm still staring at a nearly blank screen. The reason being that there has just been so much going on that I don't know where to begin. The ice cream and then the chocolate bar were just sort of time fillers while I waited for inspiration about how to focus. I still don't feel inspired and I don't dare head towards the kitchen again so I suppose I ought to just begin.

We're one month into our HANDLE program and I am still cautiously optimistic that the subtle shifts I've started to see will gel into something of lasting impact. As I mentioned in a previous post, we are having many, many nights of good sleep. Only three times since we began implementing the program has Oliver awakened in the night. But in the past Oliver has cycled between periods of good sleep and not-so-good sleep, so I am hesitant to fully attribute this to the new regimen. But there are other things. The most noticeable to me is that Oliver seems to be getting much better at regulating his own energy. Previously if I had to describe Oliver's energy to you I would have likened it to a drop of water the moment it hits a panful of very hot oil. Skittering, skating, exploding across the surface. Never resting and going in all directions at once. But lately that has changed. A few times I have even caught him resting on the sofa in the afternoons and wondered if he might actually nap. He also seems a bit more focused in all of his activities. So how do I explain this? I'm not sure, really. But I imagine that as we teach him how to organize the input he is receiving through all of his senses he has to spend less energy trying to control and/or block out sensory experiences. He can afford to rest a little.

Sometimes I look at the exercises that were recommened for Oliver and they seem so simple. I wonder how they could possibly have any profound impact. But then I go back and re-read parts of Judith Bluestone's book and my confidence is restored. The way she describes the interaction between our environment and our senses, our nervous systems and our brains just makes sense to me. If anyone is interested but hasn't yet read the book: "The Fabric of Autism" there is a radio series on Autism One radio that started in December. The second installment was on January 11th. Both of them are worth listening to.

The second big thing in our little world is that we officially began our RDI program last week. The consultant we hired came to work with us for three days. Three exhausting days. Three marevelous days! But now that I think of it there is so much I want to say about the experience that I suppose that really deserves a post of its own. Between the HANDLE program and beginning RDI, I really haven't felt so hopeful, so optimistic, so on the right track as I do starting off this new year.