Monday, November 27, 2006

At the Castle

What a glorious weekend!

My guys at the park:

Sunday, November 26, 2006

Just Chugging Along

As I mentioned in a response to a comment by Mom-NOS yesterday, I am just chugging along, reading what I can and experimenting with what I think is the theoretical framework of RDI, which is organized into stages. One stage should be mastered before moving on to the next. But a lot of it seems to overlap to me. So, while I am excited about the prospect of referencing, we are mostly just working on setting up non-verbal communication events, which probably lays some groundwork for referencing. ... And trust me, we have a lot to work on. Using non-verbal communication with Oliver usually means that I have to be sitting right next to him. Maybe even nose to nose. Or I have to make some funny noise or wild motions to get his attention from a few feet away. I've been working on this part of it for a couple of weeks now and already have noticed some slow, small changes in just his willingness to pay attention to me.

Along with the non-verbal communication, I've been trying to find all sorts of ways for Oliver and I to do things, accomplish things, together. I've been trying to incorporate Oliver and RDI into little things that happen throughout the day. Some of them are successful and some aren't. The key, I've found, is to be less focused on an end-goal and more on doing things -- however small -- together.

Here are a couple of things that we've been doing: (and again, these may not be done the right way -- I'm just going on instinct until we start with the consultant in January). But even if it isn't good RDI, it feels like good parenting, so no harm no foul.

Loading the dishes in the dishwasher. After Oliver is finished eating his lunch or dinner, he and I both take an item from the table and "race" with it to the dishwasher. Oliver normally wins the race, but then I open the door to the dishwasher and we each load our item inside.

Getting out of the car. Before opening Oliver's car door I usually mash my face into the window until he looks at me -- then we go nose to nose for a minute. I've noticed that when I open the door Oliver sometimes pulls it closed again ( I think because he likes being in the car so much and really doesn't want to get out). So now I've made a game of it and we play a kind of tug-o-war with the door.

Going down the slide. We went to the kid's castle today and because of the warm weather there were a ton of kids there. Well, Oliver's favorite activity at the castle these days is throwing tiny pebbles down the largest spiral slide. And it takes him for-ev-er! With a line of kids behind him this can be problematic. After some impatient looks from other kids and their parents, I tried to strategize how to get him to skip the pebbles part. So what I did was join him on the slide. I sat at the top with him between my knees and ever so slowly inched down the top of the slide, gripping him tightly and telling him how scared I was. When we were hovering just at the point where gravity would soon pull us down the slide, Oliver inevitably lurched forward putting us in motion. Then we would both sprint up through the castle to do it again. After I started doing this with him he didn't try to grab another handful of stones the entire time. And once, as he sprinted towards the castle I pretended that I needed help to get up from the slide and he actually stopped, turned around, came back and got me! That's when I knew I was doing something right.

Grocery shopping. This has been pretty successful for us. Oliver hangs onto the outside of the cart and when I find something that we need he gets it and throws it in (I've had to be cautious though when requestion items in glass jars!). When we find an isle that is empty of people I drive the cart like a mad-woman, starting and stopping quickly so that he has to pay attention to what I'm doing or he will fall off. Then when we get to the register he helps me put everything on the conveyor belt.

Fixing a bagel. Oliver helped me cut the bagel then he put it in the toaster. When it was done we took turns spreading butter.

Saturday, November 25, 2006

What I'm NOT Saying

Starting when Oliver was very small I got together once a week on Friday morning with a group of mothers and our kids who were all about the same age. There is a park about a mile from my house that has the most amazing play structure for kids. It is a big, elaborately built wooden structure with ladders and slides and things to crawl through, over and under, and they call it the kid's castle. I grew to really hate the kid's castle and was glad when Sam's birth caused me to stop going there with Oliver. I hated it for a couple of reasons. One is because there is a creek that runs nearby, across the soccer field and by the time he was two, Oliver spent the majority of his time trying to leave the castle so that he could throw rocks in the water. This would have been okay in principle, but on Friday mornings I coveted my time with the other Mom's because I seemed to be having so much trouble adjusting to motherhood and it was helpful to hear that others had the same doubts and troubles even though most of their kids seemed to be sleeping through the night. I also hated the kid’s castle because, although Oliver had always been pretty coordinated, the whole place seemed fraught with danger to me. Nik, who had already been through the early years with RT, looked at me with that are you serious? look whenever I started to hyperventilate because Oliver was standing too close to some precipice or other. I will never forget a time when another mother from our play group looked at me with eyebrows raised as if to say: “Geez, chill out!” when I called out to Oliver using that danger voice that mothers acquire at the birth of our first child. Her daughter happened to be standing right next to Oliver and she calmly said to me: “He’s not going to fall.” But the thing is, I didn’t believe that he wasn’t going to fall because it always seemed to me that Oliver had no real sense of danger. I didn’t believe that he had any idea that at the age of two he could not safely jump from the height of five feet. And worse: he didn’t seem to heed my danger voice at all.

One of the things that I like so much about RDI is that so much importance is placed on the art of referencing. Referencing is the ability to get important information from the non-verbal actions of others. In the DVD that lays out the RDI framework, Dr. Gutstein describes the following experiment. A baby, around six months of age, is placed on a table with a glass top. Below the glass is another surface that is designed to visually make the baby think that the surface drops away. The child is placed at one end of the table and his mother is sitting on the other side of the perceived cliff. Typical children will crawl to the drop off point and then look at their mother for information. If the mother nods and smiles and encourages the baby to continue then he will. Isn’t that amazing? Even if the baby’s visual perception is telling him that there is nothing there to support him he will continue forward because his mother has told him (non-verbally) that it is OK. That is referencing. And that is something that Oliver cannot do. So his ABA program can teach him to look someone in the face when it is appropriate to do so, but it won’t necessarily teach him to look there for important, non-verbal information. The promise of RDI is that will help a child learn to WANT to look at his parents to get that kind of information.

If you have a typical child, or a typical spouse, or typical co-workers, just think of all the times this ability has come in handy. If I could only tell you how many times a raised eyebrow has cause RT to stop doing something that he shouldn’t be doing. Or when Sam is unsure of something and feels confident to proceed with just a look in my direction. When I think of the possibility of Oliver developing that ability it makes me absolutely giddy.

We won’t formally begin our RDI program until January but we’ve already been trying to implement some basic activities and to just change how we communicate with Oliver in general. Part of this involves a lot of head shaking. Vigorously. Yes and No. Sometimes I shake my head “No” so emphatically I get dizzy. But slowly, slowly, slowly, it seems to be working. One activity that seems to lend itself naturally to the need for referencing is using the computer. Oliver and I log on to seseme street at least once a day to watch the elmo video about using the bathroom. When elmo or one of the other characters needs to use the bathroom the user is asked to press any key on the keyboard to help them make the right decision. Oliver loves this part and always presses the letter G. Two times. The program gives the user two or three chances to push a letter before it continues on its own. I position myself between the keyboard and Oliver and shake my head NO the first time or two before finally smiling broadly and shaking my head yes and indicate that he can push the button. We’ve been doing this for a few days and finally today he looked at me twice to see what I was “saying” and changed his actions accordingly. It is a small, small step but when he has it mastered I believe the impact will be profound.

Thanksgiving Report

Latest Netflix viewing: I Walk the Line. Wonderfully acted and a stunning story of love and redemption. Definitely two thumbs up.

Today I made the most amazing Turkey. 3 HEADS of garlic with cloves pushed deep into the bird, then marinated overnight in a savory sauce made from lemons, white wine, orange juice, cumin, pepper and oregano. I ate so much that I had to stop myself after two helpings and then ate still more later when I was cleaning the kitchen. I can't wait for the leftovers tomorrow.

Oliver was a real star today. Nik took him to the grocery to pick up a couple of apples that I forgot to purchase yesterday, then he and I chopped them, along with 5lbs of carrots and fed them one by one into our Jack LaLaine Juicer. Then, throughout the day whenever I had some task to do I asked for his help and together we set the table, cleared it, unloaded the dishwasher and put the leftovers into the fridge. Of course with some of those tasks he lasted only a minute or two but still, he was willing and it was fun thinking of ways to include him in an RDI, experience-sharing kind of way.

I've been putting some thought into figuring out what I'm really thankful for today. The short list is pretty easy: I'm supremely thankful for my kids and for my wonderful husband. I'm also thankful that I have the world's most wonderful boss and that he helps me to feel accomplished at work even though it has been such a rough year and that I wasn't always "there" even when I was sitting at my desk. I'm thankful for the friends who have stuck with me and for those I've made this year. I'm thankful that I decided to start this blog even though it seemed like kind of a weird, narcissistic thing to do, because the people I have "met" over the Internet have been unbelievably supportive.

But perhaps the thing that I am the most thankful for is that my story is still such a work in progress. And that I have the chance to do even better. To be a better mother. A better friend. To take what has happened this year and learn from it. I'm looking forward to what is around the corner.

And I am also thankful for Netflix and that I won't have to cook dinner tomorrow!!

Tuesday, November 14, 2006

A Night Off

About a year ago we signed up for Netflix and I thought it was the answer to our serious lack of evening entertainment. All through the winter and spring months we watched a movie each week or ten days and I felt like I was finally coming out of the cultural underground. I even entertained the idea of putting episodes from the series Sex in the City, which I have never seen, in my queue just so I would get the cultural references. Although when it comes to TV I'm so far behind -- I haven't watched it since 1991 -- that I doubt I should even think about trying to catch up. But movies! I used to love watching movies. But that was before children. And most especially it was before I seriously considered each night if flossing was really worth the extra minute or two of sleep that I would sacrifice.

We are in the throes of some serious sleep issues at our house at the moment. Oliver goes off to sleep each night only to wake a few hours later and then stays awake for the rest of the night, averaging about 3-4 hours of sleep per night. When this happens I typically go and make a bed on his floor and the two of us lay awake, together, for as long as it takes. I can't bring myself to leave him on his own. The night is so long.

All this means that I've passed by the red netflix envelope on the front hall table week after week after week without the desire to find the time in my day to watch it. Besides strategizing how to get more sleep there are newspapers and books to be read, clothes to fold and put away, bathrooms to clean, and oh, yeah, conversations with my husband are nice, too. So last night I told Nik that I was planning to cancel Netflix. We've already spent $30 on City of God and at this rate it isn't a bargain. But then something took hold of me and I suddenly felt the overwhelming desire for subtitles. If I can't eek out 2 hours of escapism in my week then I'm in worse shape than I thought.

Two hours later I was emotionally exhausted and thankful that I only had some minor sleep issues to deal with. With the sights and sounds of Rio still fresh in my mind I had trouble drifting off to sleep. But as I did a line from one of my favorite movies, "My Life as a Dog ," recurred to me. Ingemar, the main character, sometimes had it rough, but not as bad as Laika - the russian dog sent into space. And he was often heard to say: "It's good to have things to compare to."

So for now anyway, Netflix stays.

Monday, November 06, 2006

Making Connections

Making connections. That's what we've been doing with even the limited RDI time we've been using RDI methods with Oliver. I can see it in the way he engages with me when we play; when we are laying side-by-side and he takes my face in his hands and searches my face with his eyes, eager to see all that is there. And I can feel it when he is the one to hold our embrace for a second longer.

I wanted to reply to the couple of people who posted questions about RDI after my last entry but I don't necessarily think I'm the best person to ask. We just started and we haven't yet had any training. But for those who want more information about RDI and how to get started or want to find additional resources I would read this and this. I would read every single entry of this blog. And I would visit the RDI website and register as member which allows you access to non-public documents. I would also say that if you are interested you should read a little bit so that you have a pretty good understanding of the approach and then just call a consultant. And talk to that person about your unique situation. And ask for the name of someone who might have a child similar to yours that you could also talk to. I wish I had looked into RDI six months ago when I first read about it. But at the time I thought it was too complicated and too costly. Now I don't think either impression is terribly accurate. It isn't any more or less complicated than ABA for instance and it feels much more natural to me. Also, I don't think it is particularly THAT expensive. Yes, it is more than nothing; but certainly not as much as a 20 hour/week ABA program either (at least not where we live).

OK, I got a little off the track there. I wanted to outline a couple of wildly successful activities that we've been doing that have increased Oliver's willingness to share in the excitement of what is about to happen by exchanging looks with me.

The first is a game that is fun for all of my boys. RT goes into a bedroom at either end of the hallway, turns out the lights and hides himself. I take Oliver and Sam each by the hand and together we walk slowly down the hallway with me making nervous, excited noises as we get closer to the door. Then, just before we reach the doorway I stop and look at Oliver with my eyes wide in anticipation. I continue to hold Oliver's hand until he looks at me (which doesn't take long). At this point he is usually so beside himself with anticipation that he almost climbs on top of me. Then I say "Go!" and he and Sam run into the bedroom and after a few seconds RT pops out of some corner and they all collapse in shrieks of real and feigned terror.

Another game that we like to play is that I sit close by to Oliver and say with great anticipation: "I'm going to. ..." then I pause to exaggerate the anticipation and take the time to share excited looks with Oliver as he waits to see what will happen. Then I end with sometime like ". ... tickle you!" or ". ... eat your toes!" or ". ... kiss you all over!" or whatever.

The thing about RDI's concept of facial gazing that I like so much is that the aim of eye contact then becomes helping the child to learn to read someone else's expression -- to get meaning from it and to share information between two people.

It's about making connections. Pure and simple.

Friday, November 03, 2006

Getting Started

Do you know how hard it is to change your whole manner of communication? Well, it is hard. At least for me.

Our first appointment date with an RDI consultant isn't until January and so I have been reading everything I can get my hands on and trying to learn as best I can how to incorporate RDI strategies into our everyday life. The first thing on my RDI to-do list is to reduce the verbal clutter through which Oliver has to navigate. I'm talking less so that there is less to process. Part of this exercise of talking less means that I am concentrating more on using non-verbal communication. This is something I was skeptical of at first. One of the things that is supposed to be true of kids on the spectrum is that they don't pick up things from the environment in quite the same way as typical kids. So would he even notice my gestures, faces and posture? But I gave it a shot and tried to channel a paris street mime as much as possible. To help I started doing completely ridiculous things at random times throughout the day so that he wanted to keep checking out what I was up to. For example I might work up to a big, loud, messy sneeze. Or I might put Oliver's underwear on my head instead of my hat. Neither Sam or Oliver appear to know what to think these days.

And thirdly, I am concentrating on speech actions that don't require a response from him. I comment. I wonder aloud. I exclaim. And only when necessary do I direct him to do something. This is the hardest thing for me. I tend to use a lot of rhetorical questions when I speak -- especially, it turns out, when I speak to Oliver. I wasn't aware of that until I started paying attention. The rule of thumb is 80% declarative; 20% imperative. I think I had it inverted. So about 100 times a day I find myself slipping up. Especially since the verbal behavior program is structured so that we ARE supposed to elicit responses from him. (Which is a real conflict and one that I will have to work out before too long).

Oliver's response to all this was immediate and, well, amazing. He has seemed much more engaged. He is looking at me longer and more often. He seeks me out to play silly little non-verbal games that we've invented. We are connecting again.

Occassionally over the last year I have had epiphanies or insights into the human condition, or MY condition, or motherhood, or whatever -- that have profoundly impacted me. Beginning RDI with Oliver has opened a window for me on my parenting style over that last year since Oliver's diagnosis. Simply by looking at how I structure my language has shown me how much I demand of him. And not just on a day-to-day basis, but minute-by-minute.

In a past post I noted how I have made a real committment to uping the fun ante at our house. RDI certainly seems to dovetail nicely with that goal.

In conclusion I will leave you with this thought: if you try any of these tricks at home don't forget that you are wearing underwear on you head when the doorbell rings.