"I felt that I was home. Back on my old campus, I felt free to teach in a way that I had never before. I felt a freedom... "
Caroline Myss - Entering The Castle
While we were walking through the campus on the way in to this information session, it didn't surprise me that I felt completely comfortable with the experience of being at a college again. But it did surprise me that by the time the session was over, and we'd gotten back outside again after having spent just one, short, glorious hour in a college classroom, I was thoroughly and incandescently intoxicated by it.
As we made our way back out to the van, walking past all the familiar and never-changing things about college campuses - green, leafy trees, brick buildings, young students trying to study, baked, at picnic tables - I felt like I'd come home. I wanted to kiss things - the sidewalks, the bricks, the text books carried roughly in the arms of strange looking hippies, the strange looking hippies.
Several of Cale's therapists, as well as the staff in his classroom at school, are beginning to give up on Cale talking. They're talking about teaching him to use sign language or some mechanical device, "We have to be realistic," they say. They don't call it "giving up" of course. They call it "adjusting our expectations." These words look so steady on the screen. So stiff. I'm afraid you can't tell their meaning by reading them - you can't see that they're shaking.
Each time we take a step down on the "Autism" latter - another rung away from "might be able to function normally some day" - the corners of my eyes turn down again. I worry sometimes they might stay that way permanently. I wish I could describe this kind of sadness. I somehow think that describing it would give me release from it. But it wouldn't. It would take me further into it. Have you ever wondered why it's so hard to give adequate words to strong, negative feelings? I think that's why. We're not supposed to stay in them.
It has been wonderful, and vital, at this particular time in my life, for me to have a brand new focus. Something to excite me again.
I went to an information session at Arizona State University and learned about three different programs. My husband came with me for support, God bless him. I won't bore you with the details of each program but, in a nut shell, I have two basic choices.
Each time we take a step down on the "Autism" latter - another rung away from "might be able to function normally some day" - the corners of my eyes turn down again. I worry sometimes they might stay that way permanently. I wish I could describe this kind of sadness. I somehow think that describing it would give me release from it. But it wouldn't. It would take me further into it. Have you ever wondered why it's so hard to give adequate words to strong, negative feelings? I think that's why. We're not supposed to stay in them.
It has been wonderful, and vital, at this particular time in my life, for me to have a brand new focus. Something to excite me again.
I went to an information session at Arizona State University and learned about three different programs. My husband came with me for support, God bless him. I won't bore you with the details of each program but, in a nut shell, I have two basic choices.
One choice is to tack an Autism/ABA (Applied Behavioral Analysis) focus onto my existing Master's degree. This program has an education focus, would take me about a year to complete and, when done, I'd know just enough ABA to work as an ABA therapist/educator - either privately, through Autism centers, or in the schools. It would mean working directly with children with Autism all day every day. And, with just a little additional education, I could also do FBA's (Functional Behavior Analysis) and put together BIP's (Behavior Intervention Plans) for special needs students in the public schools.
The other choice is to try for a doctorate in Applied Behavioral Analysis (I'd have to go to a different school for this one). This program has more of a psychology focus, would take a lot longer to complete, obviously, but when done, I'd be able to teach Applied Behavioral Analysis to Master's level students of ABA - therapists, educators, etc. I could become a professor.
I decided immediately on the first choice. All the classes are on-line (it's not actually offered at any of the campuses) which means I'll still get to be at my house twenty four hours a day, seven days a week, to be a mother/therapy assistant for my children. This option is the fastest, easiest, and most effective way for me to learn just enough ABA that I can help my kids with it which, after all, is the whole point.
While we were walking through the campus on the way in to this information session, it didn't surprise me that I felt completely comfortable with the experience of being at a college again. But it did surprise me that by the time the session was over, and we'd gotten back outside again after having spent just one, short, glorious hour in a college classroom, I was thoroughly and incandescently intoxicated by it.
As we made our way back out to the van, walking past all the familiar and never-changing things about college campuses - green, leafy trees, brick buildings, young students trying to study, baked, at picnic tables - I felt like I'd come home. I wanted to kiss things - the sidewalks, the bricks, the text books carried roughly in the arms of strange looking hippies, the strange looking hippies.
It had literally been years since I'd been on a college campus, and it filled places in me that I'd quite forgotten existed. I didn't just breathe it in. I sucked it in. Desperately. Devoured it. And then tried to hang on as it slowly faded away into my stinky, crumb-filled minivan.
My husband had been yacking at me all the way to the van. And once we'd gotten in and gotten settled down, he started up again straight away, "I don't understand why you don't want to go for the doctorate."
"I can think about that later," I said to him, "Tacking the Autism/ABA training onto my Master's degree is what will help our kids the fastest. It seems to me to be the next brick in the road. But you're wanting me to jump three bricks ahead. One thing at a time, please?"
"But what if these classes won't apply towards a doctorate?" he couldn't drop it.
"Then if you decide you want a doctorate later on, these classes will have been a waste of time," he continued, answering his own question.
It was a gorgeous evening, so we decided to stop on Mill Avenue for a quick dinner at a Mediterranean restaurant before beginning the drive back home. We sat down at a table outside, ordered, and then continued our conversation.
"Before I can teach others how to do ABA therapy, I first will have had to have done it, and probably for a very long time, don't you think?" I asked him, "I need experience before I can look into a doctorate."
"Jess," he said, "We have two Autistic children. There's no way you're not going to have done it. You already have more experience with it then you ever thought you'd have. Any doctoral program is going to take that into account. You have a serious advantage that way. Besides, you're not going to get through any doctoral program, believe me, without having the exact right experience required for that degree."
I sipped on my Coke, the hamsters in my head hopping onto their little wheel. "Maybe some day in the far, distant future," I thought to myself (I didn't say it out loud cuz I didn't want him to think he was winning), " I really could spend my days on a college campus teaching ABA. There would be time spent other places too of course - therapy centers, training centers, and schools - but that's okay. Maybe all the years of work - the never ending therapies, the constant screaming, the kids' self-harming, the hours and hours of pain-staking repetition required to teach my son any one single thing (to no avail half the time) - won't have been for nothing. Maybe, some day, my reward for it all could really be to teach others about this stuff, at the college level!"
I'd never had a thicker, sweeter, wetter (hee hee), dreamy-er dream ever once in my whole, entire life.
Shane's voice brought me back into the present moment. I suddenly remembered where I was and the dirty house I'd be going home to after we ate. Shane was talking again, "It's not a sequence of events, "bricks in a road" as you put it, that we're talking about here. It's about choosing one of two different directions. And you're talking about going one direction, later backtracking, and then going the other."
Do you see what I live with? He was a debate coach for years.
"Oh, I see," I said, "Because one has an education focus and the other has a psych. focus?" I asked.
"Uh huh, " he said, "It's about what you want to do. Let me ask you this first. Do you really think that ABA is the end-all be-all for Cale?"
"No I don't," I answered.
"So let's say that we knew ABA would never help Cale. Would you still want to make a career out of it?" he asked.
This is a question I was prepared for because I'd been asking myself this question again and again for over two weeks.
"Yes. I'm fascinated by it is why. And the more ABA I do with our kids, the more fascinated I become even though the actual results have varied so much. It not only teaches them how to communicate more effectively with me, but it forces me to look at how I'm communicating with them. It may never get Cale to actually talk, which breaks my heart, but it gives me a way to keep on trying. To never give up."
Do you remember that movie Lorenzo's Oil? In the movie, one can clearly see the purpose of the son's illness. It was so the father could find the cure - not, in the end, in time to save his own son, to keep him from becoming severely disabled - but for the future of other children with Lorenzo's disease. Now, I'm not saying I think I'm going to find some cure for Autism, or even that I think there is a cure for Autism. That precedes a whole round of debate of which I am not willing to be a part. I will say this though. It's awfully insulting to a parent whose worked their ass off for their kids, to hear they've failed somehow because they didn't cure their kids of Autism. But that's all I'll say about that.
I'm also not saying I think ABA is some sort of end-all be-all for children with Autism. Obviously. All I'm saying is that I have to hope that there's a bigger purpose for my childrens' Autism than their own future. And there might not be. I don't know. I do tend to be a hell of a dreamer.
"It's like our kids are my own, personal teachers," I continued telling Shane, "It gives their Autism a purpose, somehow. And I need it to have a purpose. Do I think it's the end-all be-all for them? No. Nothing is. But I do think it's one (of many) of the things that might help them," I answered, "Plus, it comes easily to me and I enjoy it a great deal."
"So then the question becomes," he continued, "What is it that you want to do with it? Because one focus is designed, specifically, to set you up to work directly with kids with Autism forever. The other is much more extensive in regards to the knowledge itself, will still give you experience working directly with kids with Autism for awhile, but is designed to, in the end, set you up to teach others that knowledge. So the question boils down to this. Do you really want to work, directly, with kids with Autism all day every day for the rest of your life? Honestly? Is that what you want to do?"
"No," I didn't hesitate for one second.
And I'll tell you why. Because Autism lives in my house. It's there to deal with first thing when I wake up in the mornings, while I brush my teeth, while I pee, while I wash my hands. It often tries to get into the shower with me. It's there to deal with while I get dressed, brush my hair, find my shoes, etc. It's there to deal with all morning, all afternoon, and into every day's end.
If I dealt with it for a living, I'd do it all day every day Monday - Friday. Then I'd have to keep doing it after I got home from work, each and every single day, no matter how ready for a break I was. I'd do it all weekend too. I'd never get a break from dealing with Autism. Ever. As it is now I can send it to school for a couple hours each day. But other than that I eat with it, sleep with it, breath it, hope it doesn't start slamming Cale's head into things at the grocery store. It's part of my every waking moment, and it fills my dreams at night. It's always there - Right there. My husband was on to something here.
"Okay," he said, "Then let me ask you this. If you could do anything in the entire world that you wanted to do, what would it be?"
"I'd help our kids. And I wouldn't mind doing ABA with other kids with Autism too, but I wouldn't want to have to do it forever. Because, frankly, I foresee the possibility of quick burn out," I answered.
"Oh, Hell yeah," he said, "But that didn't answer my question. I'll ask in another way. If you could do anything in the entire world that you wanted to do, for you, what would it be?"
"Anything?" I asked, "Well, if things didn't depend on time, money, our kids, or anything else, then I would like to learn every possible thing there is to know about ABA. I wouldn't learn just enough to help our kids. I'd learn everything about it. In fact, I'd become the world's leading expert on it. It's sooo cool Shane... "
Then I went on talking incessantly about all the fascinating and wondrous things I've already learned about ABA, during which he tried to look interested. He rested his elbow on the table, his face in his hand. He listened for a long while. Then he started nodding off... just.. about to.. fall... asleep, when our food came. He was up with a start. Apparently ABA isn't as interesting to him as it is to me.
The lamb was good, the pita bread was warm, but there wasn't enough hummus. In fact, it was the tiniest glop of hummus I'd ever seen in my entire life. It barely covered one piece of bread. After I got done bitching about the hummus, I asked him what he thought I should do.
"You should get a doctorate," came flying out of his mouth.
"I can't do that right now," I said, "It would take too long."
"Why not?" he asked, "It seems pretty clear to me what you want. And besides, what's the hurry? So it takes you five years? Or ten? Who cares? There's just no hurry."
I looked at him. He leaned forward, his beautiful face hanging just over the world's tiniest glop of hummus, and looked me straight in the eyes. Then he asked me very gently, "Why would you think that you couldn't just do what you want to do?" he asked, "Why would you think you had to settle?"
I stared into my husbands eyes. I love my husband's eyes. They're the most magnificent set of eyes I've ever seen. They're dark green - like my favorite pair of khaki's. And their love has surrounded me through the years, a warm, familiar blanket during the colder times in this life of ours. Right then, staring into his eyes, I remembered something crucial. I remembered that I didn't settle when it came to choosing him.
I'll tell my "Broken Picker" story tomorrow. Off to bed.
"I can think about that later," I said to him, "Tacking the Autism/ABA training onto my Master's degree is what will help our kids the fastest. It seems to me to be the next brick in the road. But you're wanting me to jump three bricks ahead. One thing at a time, please?"
"But what if these classes won't apply towards a doctorate?" he couldn't drop it.
"Then if you decide you want a doctorate later on, these classes will have been a waste of time," he continued, answering his own question.
It was a gorgeous evening, so we decided to stop on Mill Avenue for a quick dinner at a Mediterranean restaurant before beginning the drive back home. We sat down at a table outside, ordered, and then continued our conversation.
"Before I can teach others how to do ABA therapy, I first will have had to have done it, and probably for a very long time, don't you think?" I asked him, "I need experience before I can look into a doctorate."
"Jess," he said, "We have two Autistic children. There's no way you're not going to have done it. You already have more experience with it then you ever thought you'd have. Any doctoral program is going to take that into account. You have a serious advantage that way. Besides, you're not going to get through any doctoral program, believe me, without having the exact right experience required for that degree."
I sipped on my Coke, the hamsters in my head hopping onto their little wheel. "Maybe some day in the far, distant future," I thought to myself (I didn't say it out loud cuz I didn't want him to think he was winning), " I really could spend my days on a college campus teaching ABA. There would be time spent other places too of course - therapy centers, training centers, and schools - but that's okay. Maybe all the years of work - the never ending therapies, the constant screaming, the kids' self-harming, the hours and hours of pain-staking repetition required to teach my son any one single thing (to no avail half the time) - won't have been for nothing. Maybe, some day, my reward for it all could really be to teach others about this stuff, at the college level!"
I'd never had a thicker, sweeter, wetter (hee hee), dreamy-er dream ever once in my whole, entire life.
Shane's voice brought me back into the present moment. I suddenly remembered where I was and the dirty house I'd be going home to after we ate. Shane was talking again, "It's not a sequence of events, "bricks in a road" as you put it, that we're talking about here. It's about choosing one of two different directions. And you're talking about going one direction, later backtracking, and then going the other."
Do you see what I live with? He was a debate coach for years.
"Oh, I see," I said, "Because one has an education focus and the other has a psych. focus?" I asked.
"Uh huh, " he said, "It's about what you want to do. Let me ask you this first. Do you really think that ABA is the end-all be-all for Cale?"
"No I don't," I answered.
"So let's say that we knew ABA would never help Cale. Would you still want to make a career out of it?" he asked.
This is a question I was prepared for because I'd been asking myself this question again and again for over two weeks.
"Yes. I'm fascinated by it is why. And the more ABA I do with our kids, the more fascinated I become even though the actual results have varied so much. It not only teaches them how to communicate more effectively with me, but it forces me to look at how I'm communicating with them. It may never get Cale to actually talk, which breaks my heart, but it gives me a way to keep on trying. To never give up."
Do you remember that movie Lorenzo's Oil? In the movie, one can clearly see the purpose of the son's illness. It was so the father could find the cure - not, in the end, in time to save his own son, to keep him from becoming severely disabled - but for the future of other children with Lorenzo's disease. Now, I'm not saying I think I'm going to find some cure for Autism, or even that I think there is a cure for Autism. That precedes a whole round of debate of which I am not willing to be a part. I will say this though. It's awfully insulting to a parent whose worked their ass off for their kids, to hear they've failed somehow because they didn't cure their kids of Autism. But that's all I'll say about that.
I'm also not saying I think ABA is some sort of end-all be-all for children with Autism. Obviously. All I'm saying is that I have to hope that there's a bigger purpose for my childrens' Autism than their own future. And there might not be. I don't know. I do tend to be a hell of a dreamer.
"It's like our kids are my own, personal teachers," I continued telling Shane, "It gives their Autism a purpose, somehow. And I need it to have a purpose. Do I think it's the end-all be-all for them? No. Nothing is. But I do think it's one (of many) of the things that might help them," I answered, "Plus, it comes easily to me and I enjoy it a great deal."
"So then the question becomes," he continued, "What is it that you want to do with it? Because one focus is designed, specifically, to set you up to work directly with kids with Autism forever. The other is much more extensive in regards to the knowledge itself, will still give you experience working directly with kids with Autism for awhile, but is designed to, in the end, set you up to teach others that knowledge. So the question boils down to this. Do you really want to work, directly, with kids with Autism all day every day for the rest of your life? Honestly? Is that what you want to do?"
"No," I didn't hesitate for one second.
And I'll tell you why. Because Autism lives in my house. It's there to deal with first thing when I wake up in the mornings, while I brush my teeth, while I pee, while I wash my hands. It often tries to get into the shower with me. It's there to deal with while I get dressed, brush my hair, find my shoes, etc. It's there to deal with all morning, all afternoon, and into every day's end.
If I dealt with it for a living, I'd do it all day every day Monday - Friday. Then I'd have to keep doing it after I got home from work, each and every single day, no matter how ready for a break I was. I'd do it all weekend too. I'd never get a break from dealing with Autism. Ever. As it is now I can send it to school for a couple hours each day. But other than that I eat with it, sleep with it, breath it, hope it doesn't start slamming Cale's head into things at the grocery store. It's part of my every waking moment, and it fills my dreams at night. It's always there - Right there. My husband was on to something here.
"Okay," he said, "Then let me ask you this. If you could do anything in the entire world that you wanted to do, what would it be?"
"I'd help our kids. And I wouldn't mind doing ABA with other kids with Autism too, but I wouldn't want to have to do it forever. Because, frankly, I foresee the possibility of quick burn out," I answered.
"Oh, Hell yeah," he said, "But that didn't answer my question. I'll ask in another way. If you could do anything in the entire world that you wanted to do, for you, what would it be?"
"Anything?" I asked, "Well, if things didn't depend on time, money, our kids, or anything else, then I would like to learn every possible thing there is to know about ABA. I wouldn't learn just enough to help our kids. I'd learn everything about it. In fact, I'd become the world's leading expert on it. It's sooo cool Shane... "
Then I went on talking incessantly about all the fascinating and wondrous things I've already learned about ABA, during which he tried to look interested. He rested his elbow on the table, his face in his hand. He listened for a long while. Then he started nodding off... just.. about to.. fall... asleep, when our food came. He was up with a start. Apparently ABA isn't as interesting to him as it is to me.
The lamb was good, the pita bread was warm, but there wasn't enough hummus. In fact, it was the tiniest glop of hummus I'd ever seen in my entire life. It barely covered one piece of bread. After I got done bitching about the hummus, I asked him what he thought I should do.
"You should get a doctorate," came flying out of his mouth.
"I can't do that right now," I said, "It would take too long."
"Why not?" he asked, "It seems pretty clear to me what you want. And besides, what's the hurry? So it takes you five years? Or ten? Who cares? There's just no hurry."
I looked at him. He leaned forward, his beautiful face hanging just over the world's tiniest glop of hummus, and looked me straight in the eyes. Then he asked me very gently, "Why would you think that you couldn't just do what you want to do?" he asked, "Why would you think you had to settle?"
I stared into my husbands eyes. I love my husband's eyes. They're the most magnificent set of eyes I've ever seen. They're dark green - like my favorite pair of khaki's. And their love has surrounded me through the years, a warm, familiar blanket during the colder times in this life of ours. Right then, staring into his eyes, I remembered something crucial. I remembered that I didn't settle when it came to choosing him.
I'll tell my "Broken Picker" story tomorrow. Off to bed.
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