Directly contradicting what I said yesterday. ...

OK. So maybe I AM bitter. I mean sometimes I just feel like we are totally moving off the grid, here. When I decided to quit my job and do RDI full-time I knew it would mean that I was going to take up the reigns of engineering Oliver's remediation. That's OK. I'm glad for it. And that is how it should be. And then, of course, there is the homeschooling. Our schooling options here in Virginia are so limited that homeschooling has really become our only option. I know that sending Oliver off to school each day would be counter-productive. So I'm happy to take that on as well. And don't even get me started on the doctors and medical experts we have seen! But every Friday afternoon when the speech therapist leaves I find myself feeling so very low. I know that it is a total waste of our time but I can't bring myself to give it up. I'm not ready to become an expert on speech as well as everything else. I just want some support. I want some outside resources to help us along on our way. We will get there -- wherever 'there' is. I'm sure of that. But I really don't want to do it all. I want professionals who are willing to really examine what they are teaching and why and to be willing to throw it out the window if it doesn't fit. To do some research and ask the right questions. And to look at Oliver as a boy with some challenges, not just a boy with autism. Because one size doesn't fit all. But what we have is so very lacking.

Today the SLP started off her session by trying to get Oliver to label pictures of faces with the correct emotion: happy, sad, angry. Then she moved on to getting him to label colors and assign quantities. Oliver was a good sport about it but I know him well enough to know that it was totally random whenever he did manage to get something right. And if she said: "Good sitting!" and "Good listening!" one more time I thought I would reach across the room and smack her. I'm not saying that these aren't good things to teach someone with a language deficit -- but it is just so far ahead of where Oliver's skills are at the moment that it seems pretty meaningless to me.

I'm left feeling so conceited. I'm just a mom. I'm a mom who has done about a million hours of reading on the subject of autism and child development over the last two years, but still just a mom. And when I find myself thinking that we would be better off with nothing than with the wrong thing, when I think we are better off just working it out on our own, I can only marvel at my own arrogance.

But on a more positive note: my day was filled with more arguments than I could count. Oliver is really learning to assert himself with the nod of his head! There is absolutely no uncertainty that he knows what our silent dialog is all about. I tried the opposite though: asking him to do something that he didn't want to do and that was less successful. As soon as I started insisting with a yes head nod he followed suit and nodded yes. But with some success under our belt I'm eager to see if he picks it up as quickly.

Oh, and we spent some time goofing around with the capture photo feature on my webcam this evening. It was like being in one of those photo booths at the mall only we were all in our slippers! Here's the evidence (well, you'll have to trust me on the slippers!):

Sleep, Sheep and Lovely Arguments

The good sleep continues. I'm not sure what we did to deserve it but our luck is holding out. I've even stopped counting the nights. Just like with the toileting, our reality has changed seemingly overnight and the further we get down the road in this new land where nothing actually happens in the middle of the night, the harder it is to believe that things used to be so dramatically different. We've had good spells before though so I'm not optimistic enough to actually start looking for real estate in the land of nod or anything. But I'm growing my herd of sheep nightly. And it is a good thing, too, because our recent appointment with the pediatrician when I was anxious to talk about sleep disorders was a complete bust. Really, I don't know what I was thinking. How many times do I have to see that blank look reflected back at me before I really get it? Educators and members of the medical establishment almost universally seem hold low expectations for my son and his quality of life. When I described Oliver's sleep patterns the pediatrician literally sighed and, while looking bored, said: "We see this a lot in kids with autism." He might as well have just said: "Suck it up." Nik thinks we should look for a different practice but I just don't have the stamina for it. When it comes to educators and doctors I seemed to have developed almost universal low expectations. So I'll just suck it up.

But I'm not bitter or anything. Far from it. At the moment things are going rather swimmingly. Each night after I tuck the kidlets into bed I sit myself down at the computer and spend a couple of hours immersed in learning. And my learning is making an impact on the way I am able to guide Oliver's learning. What could be better?

I've written a bit about our struggles to help Oliver understand the nature of communication. I have been stymied about how to teach Oliver to reliably answer yes and no. Sometimes it really seems as though he gets it but when he is tired or when he isn't up to form, 'no' means 'yes' and 'yes' means 'no'. But recently I've been reading about how infants learn to communicate and how they learn to interpret communication from others. It doesn't start with words. In the beginning, infants are participating in communication events that are based on visuals, vocalizations, gestures, and facial expressions. Words don't come until much, much later, usually sometime during the second year. So I decided to take a step back and try to communicate using just those means and as few words as possible. When we started RDI last year I learned to talk much less than is natural for me, to amplify my facial expressions and increase my use of gestures, but I never went as far as eliminating language altogether. Intuitively I always felt that if I wanted Oliver to talk then I needed to model language. But I have also known for some time that what he struggled with most was the very nature of communication, not necessarily the production of words.

We are two days into our little experiment and I'm not sure how much of an impact it is having but I do know this: today we had our first two arguments. He wanted something and I didn't want him to have it and both of us stood there shaking and nodding our heads at each other. In the past Oliver would pretty much imitate anything I did or said hoping it would get him what he wanted. So if I shook my head no he would do the same, thinking/hoping, that this was what he needed to do. He wasn't communicating, he was imitating. There was no real meaning behind it. But today was different. It was a real argument and it was beautiful and clear and I gave in almost immediately. I would happily lose a thousand of those kind of arguments.

And the best thing about this little exchange is that both Oliver and I came away from it motivated to keep trying. And I feel pretty confident that already we are both getting it right.

And now I'm off to find my sheep.

Five and Counting

There is something going on around here. Or rather, there is nothing going on. At least between the hours of 8pm and 7am. And this morning? 8:42 am and still counting. Or should I say that the only thing going on around here, for the younger generation, is sleep. Blissful sleep. Five nights and counting. And not only is Oliver sleeping but he is going to sleep easily. He is asking to turn the lights out and go to sleep. And he is doing it without melatonin.

The funny part is that I only just came to the revelation that Oliver has a true sleep disorder and made an appointment with his pediatrician to talk about it. For a long time I believed that the sleeping -- or lack of it -- was just part of the autism. But then I thought about what I know about the core deficits of autism and realized that messed up sleep patterns weren't part of it. So why not look at the sleep thing as a true disorder, distinct from the autism?

The last time we went to see the pediatrician about this she recommended melatonin -- and that has been a fantastic help to us. It used to be that it took me two hours or more to get Oliver settled into sleep. When he was an infant that meant laying in bed with him, completely immobile, in the dark, as he was latched on. For two hours. When he finally drifted off to sleep I would come out of the bedroom like a mad woman, half asleep myself and angry and resentful that I was the only one who could nurse this boy and that Nik and RT had been helping themselves to the rest of the ice cream because "who knows how long you'd be in there." I did that for more than two years. Two years! Now it seems like a herculean task beyond belief. But at the time it was just what I had to do, so I did it.

The same has been true for the general lack of sleep that we've endured. Five years is a long time to live with broken and non-existent sleep. Especially when you have to get up and go to work every morning and manage to pretend that you aren't the coffee mainlining zombie that you really are. Nik and I became like battle-hardened veterans. We traded in our coffee maker for an espresso machine and exchanged silent, amused looks whenever any of our friends or colleagues complained about how tired they were because of a sick child. Truly, we started to believe that no one, ever, in the history of mankind, was ever as tired as we were. But also, in a weird sort of way, we just got used to it. We learned how strong we were.

So I'm not really sure what to think about these last five nights. They are a gift for sure. Part of a trend? One can only hope! But the perspective of a few nights of sleep also reminds me of how our life, in some ways, is so fundamentally different from those of just about everyone else we know. Parallel but different. And hard sometimes. But overall, I have to say, pretty good. And today? Five times better!

Outside the closet door.

I've been wanting to post. I even started a couple of times. There is a post brewing inside my head. It's bubbling, simmering, but not quite there yet. Each time I start to work it out there are lots of dots and dashes taking the place of finished thoughts, so I hit the 'save now' button, X out of blogger and think: "Tomorrow I will finish". But when I review it the next day nothing is exactly right so I delete it and another day goes by without a word here.

THIS isn't THAT post. But it's something. And the other? Well, if you see a post here in the next couple of weeks titled 'The Sun Never Rises', then you'll know I've succeeded. I mentally work things out by coaxing little germs of perceptions into words and if I'm lucky, sentences. And this? Well, there is something about it that just isn't ready yet. It's like a small animal living in the darkened recesses of my bedroom closet. I visit it a few times every day offering platefuls of food but so far no luck. We'll see.

But in the meantime, there is lots of LIVING going on here, in this house, outside the closet door. Today we had an extra fantastic stupendous time at the dentist. I take Oliver in every three months, alternating cleaning appointments with "happy" visits, hoping to get him used to the place and the experience of rubber-gloved hands reaching into his mouth with sharp, metal instruments. And today we had some luck. Without much to-do, Oliver sat through an entire cleaning. I couldn't stop telling him how proud I was -- because I was absolutely bursting. And the hygenist told me that he has one loose front tooth and two six year molars poking through. My boy. Isn't he too young to lose a tooth? Or is it just that I'm not ready for this particular rite of passage?

And then there is the playdoh. And the homeschooling.

I ordered my Enki kindergarten package a few weeks ago thinking that I had better get a jump on things for the fall and also that *I* needed to come up with some kind of structure for our days before my head simply started spinning from too many days without the inertia to do much of anything. I LOVE being at home with the kids. LOVE IT. Love it. But sometimes the days they do stretch on, ya know? So when the curriculum materials arrived and I started to read through them I was pretty impressed but also daunted. OK, I thought: circle time? ADVENTURE circle time? Outside? I can just really see myself outside with a big stick poking and herding my kids up and down the sidewalks and alleys with the other neighborhood moms shaking their heads and clucking at me from their kitchen windows, watching as their own kids play quietly with dolls and farm animals in the next room. I so love the ideas, the foundations, upon which this curriculum is based, but I just so do NOT love having to be the one to get my kids to do it. Especially Oliver, I thought. Even the most basic parts of this, like story-time, are going to require lots and lots of scaffolding. But then, I broke out the playdoh. We haven't used playdoh here in over a year, I'm sure. Sami was immediately enthralled and declared that he was going to make a "whole forest full of bears". It took Oliver a little bit of persuasion, but not all that much as I think of it now. And then, there they were: both boys at the kitchen table experimenting and exploring with the materials. A half hour passed. An hour. Ninety minutes. And they were still at it. As I watched them from my position at the kitchen counter, leafing through the vast curriculum notebooks, I found myself daring to think: maybe this won't be as hard as I fear.

Later, when I moved the boys upstairs to my bed for family quiet time, in which we all lay together and each pretend to read a book, I also pretended not to watch as I saw something begin to blossom between my boys. Laying together with their head on the same pillow they touch their foreheads together and couldn't get over each other. Really. Their smiles and giggles at each other were beyond priceless to me. The two of them pretty much ignore each other during most of the day, but since we started these quiet times I see, finally, a brotherhood emerging between them. I can't wait to see where this leads. It occurs to me that if I had chose a different path -- to keep working, to send the kids off to school -- that I wouldn't have the luxury of allowing them this time together. I feel so incredibly blessed to have this time and space to watch and allow things to unfold.

Happy Valentine's Day my friends.