Motivation

I've been thinking about motivation this past week. Motivation to surrender that is. That storm that happens just before the calm, the one that throws it all into the air leaving permanent change for the calm to settle down on.

It's a topic that's come up several times like a child in need of attention. When I have a topic like this occur and reoccur over a fairly short period of time, it generally means that I need to stop and give it my attention. I need to pour it a glass of fresh chocolate milk, curl up with it in the rocking chair, and listen to it's message for awhile.

It started last Thursday when I was in PRT therapy with Cale. They begin each session by videotaping me playing with him for ten minutes. The goal is to get him to interact with me as much as possible during that ten minutes and then, when appropriate, set up language opportunities within that interaction.

For example, if he starts pushing the button on a music box, I'm supposed to cover that button with my hand and say, "push?" If he says "push" then I say, "YEAH!!! You said push!!" and let him push the button and hear the music (reinforcement). After the videotaped ten minutes, they give me feedback on how I'm doing and spend the next hour working with me and teaching me more ways to motivate him to talk.

We've been at this for the past three and a half weeks now. During the first three weeks this therapy managed to turn EVERY SINGLE communication attempt we had with Cale into a knock down, drag out, eardrum shattering screaming, head slamming, face scratching, no fun what-so-ever, fight. For him anyways. He finally said, "pretzel" but then stopped talking again. Pretzels are only mildly motivating apparently.

We were supposed to do this all day every day with him no matter how miserable it made our family. We were supposed to make him ASK for everything that he wanted and all he had to say was, "uh" to get it.

We did it (a lot anyways), and all he did was scream and scream and scream. It really hurt my feelings that talking to me could be THAT aversive for him. "Why is interacting with your Mama such a horrible thing?" I would ask Cale during his fits of total rage. Pretty soon I could feel my own resentment towards him swelling like a hot dog in the microwave.

After awhile the tantrums stopped, but he still wouldn't interact. Instead he'd avoid us entirely. If we'd cover the button, he'd just walk away. We'd follow and try to interact with the next toy and he'd walk away from that one too. And round and round we'd go. "Toys smoys," I imagined him saying to himself, "If it means I have to talk to YOU then I don't want it!" It would've broken my heart entirely if there were any pieces left that were big enough to break.

After three weeks of intense discouragement with no results (other then "pretzel"), I began to seriously question this therapy. It was quickly reaching "not worth it" status.

Then, of course, came the breakthrough.

During the initial ten minutes last Thursday, I did the usual and followed his lead (I went to the toy he lead me to) and attempted to play with him. And as usual, he just moved on to the next. He'd rather lose the toy than have to interact with me while playing with it.

Let me say that again. He'd rather lose the toy than have to interact with ME while playing with it. Can you see how the MIS-perception that autistic people "can't love" came into being? That description is still in the DSM-4. Yeah. We really need to join the 21st century regarding autism.

Around in circles we went for the whole ten minutes of videotaping after which I explained to the therapist that this was what it had become at home as well. I also explained that I have two other children, schools to visit, I.E.P.s to pick apart, teachers to find, therapists to find, doctors to see, appointments to keep, a state to fight a bloody battle with, laundry, etc., etc., etc. And I summed it all up with, "and I have very little time to waste." I'm so glad they're used to us parents.

She put her camera away and studied Cale for awhile. Then she gave me some suggestions regarding arranging the environment a little differently. Putting the toys up on a shelf, for example, where he can see them but has to ask for me to get them down. She said I could do the same with cereal, or anything else he likes for that matter. "So let's try it," she suggested.

We put all the toys behind a cupboard door and then I sat down in front of the cupboard, blocking the door. "Now wait," she suggested, "until he acts like he wants to get in there. Then say, "open?""

So I waited. I looked down at Cale who was laying on the floor crying softly. He was tired that morning and had been trying to get me to just hold him ever since we'd gotten into the therapy room. "Dang it Cale," I had thought during the first ten minutes, "we're supposed to be engaged with the toys here! Don't you realize Mama's being taped?" If you have any sort of need to look good to others and you have autistic kids, you're in luck. Autism will always take care of that problem for you.

He didn't care at all that the toys were in the cupboard. He didn't want the toys. Toys smoys. And that's when it suddenly, and for just a moment, became clear like a flash of blue sky between the rain clouds. What he wanted was me. And it had never before occurred to me to use myself as reinforcement.

He got up, came over to me, and sat on my lap. I started talking to him softly, "Hi sweetie. You look so tired." I snuggled him up. He put his thumb in his mouth, took my hand, and put it up to his arm (this is what he does when he wants me to tickle his arms real softly). So I asked, "tickle?"

He got up, screamed, and hit me in the face as hard as he could with both fists. My kids are so fast! They go from sweet baby to little demon in half a second flat. As a result, I have swollen or black eyes and scratches on my face all the time. I think there are people who sometimes wonder about my husband:)

"Ah haa!" I thought.

He kept screaming and hitting me in the face so I stood up and turned away. His cry changed from anger to anguish as he got in front of me sobbing, batting at my legs, and holding up his arms.

Now I've become a calloused, worn out, and crabby old mama but there is something about a crying child looking at me with his arms up that could move boulders inside of me. I prayed, "God please help," under my breath and it actually took an act of God to keep my arms at my sides.

Then I did something I wasn't sure wasn't the straw on the camel's back, the tip of the iceberg, the hole in the doughnut, oh hell...it just felt downright cruel. I looked down at him, almost shaking, and said, "up?"

He threw himself on the floor slamming his head into it repeatedly. "Sorry Cale," I thought, "that button's been disconnected by your sister." I knelt down and kept him from hurting his head without looking at him, which I've become a complete expert at. He kicked me in the face with both feet so I turned my face away, still keeping him from hitting his head. He kicked me in the chest and the neck a few times before I got him up against the wall in a position where he couldn't really move his head. Then I held him there and used my other hand to push his legs down.

He screamed and screamed and screamed during which the therapist said things like, "Good job," and "Great job," and "This is really good actually." My ears gobbled up and savored her praise because when I do this alone at home, I just feel like a terrible mother.

The tears tried hard to well up in my eyes, almost like someone was poking little holes in my eyeballs with a tiny needle. But nothing came out. I'm afraid I've done this so many times with Isabel that it's barely upsetting anymore. And now I have to do it with Cale. The tears couldn't come as I held my son down, and I started to wonder if the Arizona sun is turning my heart into leather.

Then the therapist said something I could hear with both ears and all of my experience, "I know it's hard," she said, "but the fact that he's so upset tells me that he's motivated. Now we just need to let him go through this painful process until he becomes willing to do it differently (ask for my affection in an appropriate way). And we'll just sit here and wait for him until he's done."

"Huh," I thought to myself, "I believe I've heard this somewhere before!" And that slid everything about Cale right into perspective for me. "Just wait until he's done." I don't have to feel bad. At all. And my chest lightened like someone pulled a truck off the top of me.

After Cale finally quieted completely, I held out my arms and said, "hug?" And he whispered, "hu." I picked him up and hugged him tight saying, "You said HUG, good job!!"

Cale started by asking for my affection for the rest of the day. He said, "tickle and hug" for the rest of the day! Since then this has expanded and he has said, "Isabel, Mama, let's go, go bye-bye, eat, candy, drum, blow, open, cereal, and drink" and a whole bunch of other things I can't recognize. He sounds like he's deaf when he talks but then again he hasn't had any speech therapy yet. And hell, if he'll just say, "eat" instead of wandering around screaming (leaving me wondering what in the heck he wants), it'll be a lot easier on my ear drums.

You know? I think I had to get motivated to surrender too. I had to surrender and accept that I have to raise autistic kids. Not unlike my son, I lived for awhile in the center of a giant internal tantrum of my own over this, which eventually became unbearably painful.

I didn't want to do it. I didn't WANT to raise children with autism. Just like Cale hasn't WANTED to talk. I denied it, I was slow to take necessary actions, I've been angry about it, I've bargained ("please tell me they're actually normal and that the doctors have made a mistake"). And around I've gone with these things. I still have it in my head sometimes that they're going to "pull out of this" some day. But in reality that's not generally how it works. So for awhile I raged in my tantrum, and I think God sat there waiting for me to get done.

I hate to say that I've surrendered now and that it'll all be okay because I say that one week and then the next fight surfaces (this week it's the state again as well as the school district) and I spin off again.

But one thing has become as clear to me as the air I breathe. I can't spend my life in a tantrum. I can't keep fighting the reality. I have to do it no matter how I feel about it. So I might as well surrender to it.

Through this process I've found out that my inner peace is the single most important thing in my entire life. Now that may sound silly, but if I have peace then my kids will feel that too and I'll be able to keep moving forward. Therefore, I need to do a bit of work to keep it in tact and I need to protect it carefully.

When I feel my skin peeling off because the state says, "You have to ask for that in a certain way to get it for your son," and "No I can't tell you how to ask for it," I need to do whatever it takes to keep my peace of mind. WHATEVER it takes.

I use prayer and meditation, inspirational writing, I try to view the situation from another angle, and I try to find people to relate too, maybe even someone who is having a harder time than I am who could use a little help. Parents with autistic kids ALWAYS need help and they're not that hard to find. When I do these things my skin stays on and my peace of mind comes back again like rain on a garden.

The gift of even a few words for Cale has meant a serious lessening in all of his stimming and other disruptive behaviors. He still likes to dip his arms in up to his elbows in pee filled toilets. But he's happier. So I know it has power for him of which he is not yet entirely aware, if he'll just keep surrendering HIS will and keep moving forward with it. I know somehow that this is true for me too.

It's a beginning for the both of us.

The Saguaro cacti are blooming by the way. Just today I noticed a tiny pink flower peeking out of the sharp green thorns.