Sort of.
Over the summer it suddenly occurred to me that Oliver couldn't answer yes/no questions. How could that have escaped me? Well, Oliver can say "No, no, no, no, no!" when he is asked to do something that he clearly doesn't want to do. And he can say "Yes" when you ask him if he wants a cookie. But if you ask him if he wants to wear the red shirt, he has no idea what you are looking for by way of an answer. It has been difficult for me to realize that Oliver didn't even have a grasp on this, most basic, form of communication. No wonder other, more advanced, concepts have proven so difficult for him. So for the past six weeks at our house everything has been about yes and no. And slowly, slowly, he is getting it and our lives are getting easier with his increasing mastery. Because as Oliver realizes that he can influence his environment with yes and no, he is also learning how to express his own preferences. We don't have complete mastery. There are still times when Oliver will answer No when I'm pretty sure he means Yes and vice versa. But we are so close that I can't stop myself from wondering what comes next. What else will this unlock for us?
I can't help but think of this in the context of an on-going conversation that I've been having with our SLP. She doesn't feel as though she is being particularly effective with Oliver. She thinks he needs to be in the classroom. She thinks he needs to be with his same-aged peers. She thinks he will learn more in that environment than with just 45 minutes of speech once a week.
What I said to her in response is this: Developmentally, Oliver is not ready to learn from his peers. Putting him in a classroom where he is only able to fully understand and participate in about 25% of the activities would be extremely stressful to him. And why is it assumed that Oliver will "pick up" speech and social behaviors from his peers when he isn't "picking them up" from his family and home environment? If Oliver is developmentally delayed -- if he is not functioning at the same level as other five year olds -- then why should any of us expect that he function in an atmosphere that is designed for a five year old? I don't care, at the moment, if Oliver can count or say his ABCs (although he can do both). I just want him to say Yes and No reliably. I want him to be able to communicate his needs and desires. Will they focus on these two things in the school as I am at home? All day, everyday? I doubt it.
I believe all of this. I do. But it is hard to remain confident in the face of so much skepticism. And it is terribly draining to have to constantly convince others (you know, the ones with initials after their names) that I know what I'm talking about and that I'm not doing a terrible dis-service to Oliver by not doing what conventional education theory recommends. And I have to admit that part of me would like nothing better than to hand over the reigns and responsibility to people who probably don't question themselves as much as I do.
Apparently Oliver isn't the only one in our family who is learning to say Yes and No with confidence and conviction. Apparently I'm on my own developmental track as well!
Wednesday, October 31, 2007
Tuesday, October 23, 2007
My Bubbles
Not too long ago I posted that I had decided to quit my job and change my career. It had become so obvious to me that, although I used to find great challenge and satisfaction in my job, things had changed and I needed to find a new direction. It became too difficult for me to split my devotions everyday between my job at home and my job at the office. Going to work became too much like an exercise in collecting a paycheck and I wasn't feeling very good about myself. SO, on the spur of the moment and with a healthy dose of optimism, I quit my job and decided to apply to the RDI certification program.
Yesterday I was accepted.
Today I have been breathing deeply with a mixture of anxiety and excitement. I'm on the verge of making an immense change and there is no way to know how things will go unless I jump in with both feet. But jumping has never come all that easily to me. Oh, and did I mention that I will need to be away from home for nearly two weeks in December? Two weeks? Nevermind all of the intellectual, emotional and financial challenges that are sure to lie ahead, my mind is having trouble wrapping itself around that one little point and a single distressing thought keeps floating to the surface: "What will they eat?!"
But in the midst of that bit of angst, I can't help but feel a second bubble of excitement that is floating just beneath the surface. I'm doing this. I'm following my gut. I'm not taking the safe, static, route. I've even allowed myself to do a little bit of dreaming on an even larger scale. And here it is, I'll share it with you; my dream for the future: I want to start a local non-profit organization with the hope that I can raise most, or all, of the funds needed to cover RDI services for families who need it most. In my experience, RDI is a lot cheaper than ABA, but it is also a lot less likely to be covered by any kind of insurance or included in any public school supported services, thus putting it out of reach for so many families. I'm pretty good at grant writing and I think I can be pretty persuasive about RDI. So, I'm going to start off in that direction and see where I'm led. I mean, if I'm going to change my whole life then I might as well go for the whole enchilada, don't you think? Or am I just totally crazy?
Yesterday I was accepted.
Today I have been breathing deeply with a mixture of anxiety and excitement. I'm on the verge of making an immense change and there is no way to know how things will go unless I jump in with both feet. But jumping has never come all that easily to me. Oh, and did I mention that I will need to be away from home for nearly two weeks in December? Two weeks? Nevermind all of the intellectual, emotional and financial challenges that are sure to lie ahead, my mind is having trouble wrapping itself around that one little point and a single distressing thought keeps floating to the surface: "What will they eat?!"
But in the midst of that bit of angst, I can't help but feel a second bubble of excitement that is floating just beneath the surface. I'm doing this. I'm following my gut. I'm not taking the safe, static, route. I've even allowed myself to do a little bit of dreaming on an even larger scale. And here it is, I'll share it with you; my dream for the future: I want to start a local non-profit organization with the hope that I can raise most, or all, of the funds needed to cover RDI services for families who need it most. In my experience, RDI is a lot cheaper than ABA, but it is also a lot less likely to be covered by any kind of insurance or included in any public school supported services, thus putting it out of reach for so many families. I'm pretty good at grant writing and I think I can be pretty persuasive about RDI. So, I'm going to start off in that direction and see where I'm led. I mean, if I'm going to change my whole life then I might as well go for the whole enchilada, don't you think? Or am I just totally crazy?
Tuesday, October 16, 2007
What the. .. ?
OK, I can't figure this out. My videos show up in the preview of the post below but are missing when I publish. Or is it just me? Anybody tech savvy enough to give advice?
Monday, October 15, 2007
Then and Now
One of the things I really like about RDI is that whenever I'm feel a bit discouraged I can go back and see how far we've come. The first video was taken last February. At that time it was hard to get Oliver to stay with us at all. If we weren't holding onto him in some way he would have taken off across the field. Or plopped down to examine all the straw. The second video was taken at the end of September. What a difference six months make!
Tuesday, October 09, 2007
I finally got around to downloading some pictures from my camera last night and as I was going through them I found this:
This was created on our fateful trip to the cabin in August. Not a whole lot went right about that little get-away, let me tell you. But this really intrigued me. Oliver spent a good fifteen minutes working on it. Placing each piece of carrot just so. And this from a boy who has never shown much of an interest in the more traditional art forms of the pre-school age. So, maybe I have a little materials artist on my hands?
Also, some other photos from that same trip:
This was created on our fateful trip to the cabin in August. Not a whole lot went right about that little get-away, let me tell you. But this really intrigued me. Oliver spent a good fifteen minutes working on it. Placing each piece of carrot just so. And this from a boy who has never shown much of an interest in the more traditional art forms of the pre-school age. So, maybe I have a little materials artist on my hands?
Also, some other photos from that same trip:
Monday, October 08, 2007
Party Poopers
We're all party poopers at our house. In the most literal sense. I debated a bit about posting on this subject because even though I share a lot of our world, some of it will always, has to, remain private. And also because I hope that by sharing a bit of our world it will, in some small way, influence how others think about people with autism. And the poop thing? Well, yes, it's there for many of us. But is that really what I want to say about autism? About Oliver? In the scheme of things it just isn't that important. Except while you are going through it. Then, if you let it, it can become all-important.
We've been working on the toileting thing since Oliver was three with moderate success. I mean, for over two years now Oliver has known what to do but would not -- WOULD NOT -- do it independently. Then, this past summer, he suddenly would not even do what needed to be done when prompted. Some might have concluded that we'd had a "regression" -- but knowing Oliver, I figured out pretty quickly that it was something else entirely and I was, for awhile helpless, as a dynamic of struggle emerged between the two of us that eventually organized most of our day. That was mistake #1. The struggle, in turn, made life rather stressful for all of us and toileting suddenly found it's way to the top of the priority list. Mistake #2.
At the height of the toilet war I realized that Oliver and I were locked in a battle of wills. I knew it and he knew it and since we are from the same stubborn stock we found it impossible to extricate ourselves. Indeed, the hardest part was realizing that I had to be the adult in the situation; realizing that I had to yield. I try very hard to find ways throughout the day to give Oliver control over whatever makes sense -- to let him be independent as much as possible. But my first impulse is to make choices for him and to prompt him to do what I want him to do. It's wrong. I know it and yet too often find myself on auto-pilot. And so it was that Oliver made his stand over the toilet. After all, it is the one thing in life that he pretty much totally controls.
And so I set out to change things between us, to eliminate the struggle for control. And it worked. The first day. I told Oliver that it was up to him. He could use the toilet. Or not. Either one was OK with me. And I could only say that after truly convincing myself that it was so. And for a set period of time each day I planned to just concentrate on playing together within close proximity to the bathroom. I promised myself that I wasn't going to try to get anything from him. No pushing for language or to take turns or even for him to interact with me. I was just going to spend time with him and try to have fun. I was going to enjoy myself. And a remarkable thing happened: We enjoyed ourselves together. We spent some time running our fingers across the carpet and watching how the fibers moved. I was tired and lazy so after a minute or so it became strangely meditative. Then we moved to the bathtub and I didn't say "No" when Oliver splashed some water at me. Instead I looked surprised and said: "I'm all wet!" And do you know what Oliver did? He came over, peered at my face and said:"You're all wet!" Then gleefully repeated it a few times until I was more than a little wet, each time saying those same beautiful words that came of his own volition. That alone was worth the price.
Sometime during all this I was aware that Oliver was in the process of making a decision. A few times he looked at or went close to the toilet, then slammed the lid down and turned away. But eventually, he just worked it all out for himself and, well, it all worked out.
That was about ten days ago and, although Oliver still needs me to encourage him to use the toilet, we haven't had a problem since. I adjusted my attitude, Oliver adjusted his response and together we are finding our way down this bumpy path. But what I find so instructive about this whole experience was that it secured for me the understanding that so much of what Oliver can do, or does, is wrapped up in his relationship with the people who are most important in his world. It isn't just about the autism. It is about me and about Nik and everyone else who loves Oliver.
In a strange way this whole thing taught me a lesson that I've learned many times over, a lesson that I will probably keep learning: Mothering Oliver isn't just about getting him to do what I want him to do; it is about giving him the ability to decide what should be done -- two very different things. And in a way I'm grateful for this lesson because every day now, for the past ten days, for at least an hour, Oliver and I -- and sometimes Sam -- have had a little party of sorts. And we wouldn't have had that if I hadn't been willing to yield a little bit and let Oliver lead the parade.
We've been working on the toileting thing since Oliver was three with moderate success. I mean, for over two years now Oliver has known what to do but would not -- WOULD NOT -- do it independently. Then, this past summer, he suddenly would not even do what needed to be done when prompted. Some might have concluded that we'd had a "regression" -- but knowing Oliver, I figured out pretty quickly that it was something else entirely and I was, for awhile helpless, as a dynamic of struggle emerged between the two of us that eventually organized most of our day. That was mistake #1. The struggle, in turn, made life rather stressful for all of us and toileting suddenly found it's way to the top of the priority list. Mistake #2.
At the height of the toilet war I realized that Oliver and I were locked in a battle of wills. I knew it and he knew it and since we are from the same stubborn stock we found it impossible to extricate ourselves. Indeed, the hardest part was realizing that I had to be the adult in the situation; realizing that I had to yield. I try very hard to find ways throughout the day to give Oliver control over whatever makes sense -- to let him be independent as much as possible. But my first impulse is to make choices for him and to prompt him to do what I want him to do. It's wrong. I know it and yet too often find myself on auto-pilot. And so it was that Oliver made his stand over the toilet. After all, it is the one thing in life that he pretty much totally controls.
And so I set out to change things between us, to eliminate the struggle for control. And it worked. The first day. I told Oliver that it was up to him. He could use the toilet. Or not. Either one was OK with me. And I could only say that after truly convincing myself that it was so. And for a set period of time each day I planned to just concentrate on playing together within close proximity to the bathroom. I promised myself that I wasn't going to try to get anything from him. No pushing for language or to take turns or even for him to interact with me. I was just going to spend time with him and try to have fun. I was going to enjoy myself. And a remarkable thing happened: We enjoyed ourselves together. We spent some time running our fingers across the carpet and watching how the fibers moved. I was tired and lazy so after a minute or so it became strangely meditative. Then we moved to the bathtub and I didn't say "No" when Oliver splashed some water at me. Instead I looked surprised and said: "I'm all wet!" And do you know what Oliver did? He came over, peered at my face and said:"You're all wet!" Then gleefully repeated it a few times until I was more than a little wet, each time saying those same beautiful words that came of his own volition. That alone was worth the price.
Sometime during all this I was aware that Oliver was in the process of making a decision. A few times he looked at or went close to the toilet, then slammed the lid down and turned away. But eventually, he just worked it all out for himself and, well, it all worked out.
That was about ten days ago and, although Oliver still needs me to encourage him to use the toilet, we haven't had a problem since. I adjusted my attitude, Oliver adjusted his response and together we are finding our way down this bumpy path. But what I find so instructive about this whole experience was that it secured for me the understanding that so much of what Oliver can do, or does, is wrapped up in his relationship with the people who are most important in his world. It isn't just about the autism. It is about me and about Nik and everyone else who loves Oliver.
In a strange way this whole thing taught me a lesson that I've learned many times over, a lesson that I will probably keep learning: Mothering Oliver isn't just about getting him to do what I want him to do; it is about giving him the ability to decide what should be done -- two very different things. And in a way I'm grateful for this lesson because every day now, for the past ten days, for at least an hour, Oliver and I -- and sometimes Sam -- have had a little party of sorts. And we wouldn't have had that if I hadn't been willing to yield a little bit and let Oliver lead the parade.
Thursday, October 04, 2007
Tuesday, October 02, 2007
Totally Random
Hmmm. There's lots of stuff going on in my life just now -- some of it so dreary I'd rather not think about it -- but plenty of it good and worthy of comment. And yet, I can't seem to rub two words together to make a sentence happen. So, as much as I hate doing it: a list. On something like it.
1. Nik and I actually had a date. Well, sort of. The occasion: our wedding anniversary. We dropped the little ones off at a friends house at 5:20, arrived at the restaurant at 5:45, sat in the bar and had a glass of wine for 15 minutes and then moved to a table for our meal. At 7pm we asked for the check then race-walked home to pick up the car and RT who was waiting impatiently to be taken to the football game and loudly complained that he was now going to be late and had tried to call us 5 times to hurry us along. By 7:45 we had the little ones back in the car and were headed home and I said to Nik: "You know that kind of nice alcohol buzz that you get from drinking a bit of wine? Well, I don't really enjoy it anymore. It makes me feel a bit impatient with myself." All residents of the house, save the teenager, were soundly asleep by 9:30.
2. A few years ago when we first tried to teach Oliver to pedal a bike I thought I had encountered the zenith of frustrating experiences. Now I know that he WAS working hard. But the hard work of trying to get his legs and feet to move in a coordinated fashion as dictated by his brain was mostly invisible to those looking on. To us it looked like he was just sitting there. I also now understand that teaching a child to pedal is nowhere near as frustrating and downright frightening as teaching him to BRAKE! I also now understand that neither Nik or I are as fast as we would like to think we are and that a 50lb boy on a bike can gather quite some speed on the slightest of inclines. And I understand that this whole experience is exhilarating enough that a 5 year old boy would want to repeat it again and again.
3. Understanding Oliver and how his autism affects him is like peeling the layers from an onion. I think I have something figured out and then I peel another layer back to reveal something even more basic and fundamental to his experience. To his personhood. For instance: I knew that Oliver's speech problems weren't just to do with the actual production of sound. Or his understanding of the meaning of words. I knew that it had to do with communication. Oliver does not understand the nature of communication. He cannot answer yes/no questions. He has been responding out of habit all along. If someone says something to him that sounds like a question he will say "yes". He has no concept of answering "no". Imagine how powerless that must leave a person feeling. But we're working on it.
4. I joined a book club. The first book, the one we are meeting tonight to discuss, was the Kite Runner. What a beautifully written book. Too bad I'm only on about page 45. I tried. I really did. The book is great and I want to read it, I do, but I didn't have time and now I feel like I did in graduate school when I never had time to do all the readings before class. I knew this would happen but I so want to believe that my life is different than it actually is.
5. I will take my boys in the dirt today. We will plant 100 daffodil bulbs. And then we'll have a picnic on the front porch with our special juice and waffles in the shape of barn yard animals and smothered with peanut butter and jam.
1. Nik and I actually had a date. Well, sort of. The occasion: our wedding anniversary. We dropped the little ones off at a friends house at 5:20, arrived at the restaurant at 5:45, sat in the bar and had a glass of wine for 15 minutes and then moved to a table for our meal. At 7pm we asked for the check then race-walked home to pick up the car and RT who was waiting impatiently to be taken to the football game and loudly complained that he was now going to be late and had tried to call us 5 times to hurry us along. By 7:45 we had the little ones back in the car and were headed home and I said to Nik: "You know that kind of nice alcohol buzz that you get from drinking a bit of wine? Well, I don't really enjoy it anymore. It makes me feel a bit impatient with myself." All residents of the house, save the teenager, were soundly asleep by 9:30.
2. A few years ago when we first tried to teach Oliver to pedal a bike I thought I had encountered the zenith of frustrating experiences. Now I know that he WAS working hard. But the hard work of trying to get his legs and feet to move in a coordinated fashion as dictated by his brain was mostly invisible to those looking on. To us it looked like he was just sitting there. I also now understand that teaching a child to pedal is nowhere near as frustrating and downright frightening as teaching him to BRAKE! I also now understand that neither Nik or I are as fast as we would like to think we are and that a 50lb boy on a bike can gather quite some speed on the slightest of inclines. And I understand that this whole experience is exhilarating enough that a 5 year old boy would want to repeat it again and again.
3. Understanding Oliver and how his autism affects him is like peeling the layers from an onion. I think I have something figured out and then I peel another layer back to reveal something even more basic and fundamental to his experience. To his personhood. For instance: I knew that Oliver's speech problems weren't just to do with the actual production of sound. Or his understanding of the meaning of words. I knew that it had to do with communication. Oliver does not understand the nature of communication. He cannot answer yes/no questions. He has been responding out of habit all along. If someone says something to him that sounds like a question he will say "yes". He has no concept of answering "no". Imagine how powerless that must leave a person feeling. But we're working on it.
4. I joined a book club. The first book, the one we are meeting tonight to discuss, was the Kite Runner. What a beautifully written book. Too bad I'm only on about page 45. I tried. I really did. The book is great and I want to read it, I do, but I didn't have time and now I feel like I did in graduate school when I never had time to do all the readings before class. I knew this would happen but I so want to believe that my life is different than it actually is.
5. I will take my boys in the dirt today. We will plant 100 daffodil bulbs. And then we'll have a picnic on the front porch with our special juice and waffles in the shape of barn yard animals and smothered with peanut butter and jam.
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