Another Surrender

There's an old oil painting sitting in my hallway.  I found it while going through the closet the other day.  I started painting it years ago and have never found the time to complete it.  It's one of those that's taken on a spirit of it's own, which means, in a way, it won't be complete until it says it's complete.

Paintings like that are a pain in the ass because they, not the artist, are in control.  And they can go being incomplete forever until the artist finally surrenders to spending all the time necessary with it for it to finally "say" it's done.  They're also, incidentally, the paintings that become masterpieces upon completion. 

It's an image of my daughter walking towards a sunset, off to bigger and better things.  I can't see her face.  Only the back of her head and her dress are really clear.

My problem is with the feet.  I've re-painted them over and over again.  Her dress is so wonderful, so distracting, and has so many glorious things going on it - warm shimmery colors, the glow of the sunset carefully layered up on each fold, and big beautiful, billowy swirls, that it's difficult for the viewer to make out the tiny feet underneath.

"They blend eerily into the ground," someone once critiqued.

"They're getting clearer each time I re-paint them," I answered.

"No, they're not," that same someone replied, "What exactly are the feet supposed to be doing?"

"Well," I answered, "walking the little girl away."

Isabel and Cale both had appointments with the developmental pediatrician the week before spring break, so I left Alden at home with Daddy, packed a diaper bag and made sure I had suckers in it, and drove Isabel and Cale twenty million miles to this doctor's office.

When we got into the doctor's office I pulled out a sucker for Cale, and the doctor said, "Oh, no food in here please."

"Oh," I replied, "okay... but then it won't be long before he starts screaming.  Just so you know.  And once he starts screaming I won't be able to give him the sucker, because a sucker can't be the consequence of screaming."

I think this doctor might be Asperger's himself.  He and Isabel have all the same stiff body mannerisms, and he hates loud noises as badly as she does.  Have you ever been in a room with someone who can't stand loud noises (and I don't mean the grumpy old lady at the grocery store who claims to have weak nerves but who really just has a shitty attitude - I mean someone who genuinely can't stand loud noises?) and another someone who can and does start screaming as loud as physically possible at the drop of a hat?  It's exhausting being in the room with such people even before the screaming begins.

I designed a child's "Scream Muzzle" one time.  You know?  Like one of those kid leashes made socially appropriate by sticking a stuffed puppy dog onto it and making it look like a cute little backpack?  My muzzle was just a drawing - I never did make a prototype, but I've often wondered if I could've made a fortune with such an invention.

This muzzle, like the backpack leash, was cute too - pink with butterflies on it for a girl and blue with puppy dogs on it for a boy.  I made the drawing back when Isabel still screamed and slammed her head into the floor multiple times each day.  Hers was a combination helmet/muzzle with pink ruffles and a teddy bear on the side.  Brilliant idea don't you think?  Or maybe it flies straight over the edge of sick and wrong.  I'm not sure, but Shane appreciated the idea so much he laughed so hard he almost peed his pants.  He, too, has lived with screamers for eight years in a row.

"Okay," the doctor said, "go ahead and give him the sucker."

I pulled out the sucker.  Cale said, "sucker" and "open" so I opened it up and gave it to him.

Then the doctor asked me about Isabel.  And do you know what I did?  I proceeded to talk about Cale.  He didn't mind switching the appointments so that Cale went first, so we talked for a long time about all the things going on with Cale.  And when it finally became Isabel's turn again, guess what happened?  Cale started screaming of course.  And we spent the entirety of Isabel's appointment listening to and trying to figure out the "function" of Cale's tantrum. 

"Why is he screaming?" the doctor asked me (cringing and gritting his teeth at the height of each scream), "What is the function?"

"My best guess is that he's pissed his sucker wasn't a Tootsie Pop with tootsie roll inside.  See how he bit off the end of the stick?  I'm afraid I'm out of Tootsie Pops," I said, as I realized I should've thought of that ahead of time and picked up some more.  I really thought the dums dums would do.

"Give him another sucker, just to see if that's what he wants," he suggested.

"All I have are the dum dums," I said.

"Yeah, but try it," he insisted.

Now, think about this for a second.  If I couldn't talk, couldn't put together how to communicate with words or signs or something, and someone gave me a treat - something that, at first, appeared to be what I wanted but turned out NOT to be the thing I wanted after all - I would be frustrated by that in the first place.  But then if I communicated my disappointment, in the only way I knew how, and the result of it was that they kept trying to give me the thing I didn't want?  Then I'd be really frustrated, because I'd be confronted directly by my inability to communicate my disappointment and/or desire.  In fact, this would frustrate me much worse than whether or not I got what I wanted.  Because I'd feel powerless.  And afraid.  And I don't know about you, but when I feel powerless and afraid the first thing I try to do is assert power (tantruming is powerful).

Why didn't I explain this to the doctor?  Because when I'm in the moment I can't think it yet, if that makes any sense.  I can only feel it (and feelings are more difficult to trust).  When I'm in the process of figuring it out, I can't yet explain what it is that's going on.

So I did as the doctor requested and gave Cale another dum dum.  He took one lick, looked at it more closely, and then threw it on the ground letting out a blood curdling scream.

"So it wasn't a sucker that he wanted?" the doctor concluded, missing the point.

Again I explained, "The function of his screaming is to communicate he's mad that the last sucker wasn't the kind he wanted.  And I don't have the kind he wants with me," I said, "I'm sorry.  I can't always guess these things ahead of time.  I try, but I always manage to screw something up."

We tried several other things to distract Cale, but he wouldn't be distracted.  I finally looked at the doctor smiling cheerfully and shrugging my shoulders, "Well, now all we can do is ignore the screaming."

I tried to get the doctor's attention back and talk about Isabel through Cale's screaming, but Cale started trashing the office.  He grabbed a big plastic toy truck off the table and threw it into the filing cabinet.  Then he started knocking over the waste paper baskets and the chairs.  Isabel started rocking in her chair, eyes closed and and hands over her ears.  Then Cale went over and hit the doctor.  Then he hit me.  Then he sat down and started pinching his own legs.

The doctor tolerated this for about five minutes before writing an actual prescription for no less than twenty five hours of ABA therapy per week.  Then he shuffled us out his door.  Cale screamed all the way home.   

"So how did the doctor think Isabel is doing?" Shane asked me when we got home.

"I couldn't tell you," I answered, "We never got to Isabel."  

"It's crucial that you get Cale twenty or more hours of ABA therapy per week for JUST THIS ONE YEAR!" I keep reading and hearing everyone say, "Because he's at the crucial age for learning to communicate.  If he doesn't get it THIS YEAR his chances of ever speaking functionally go way, WAY down!"  I can see why people mortgage themselves into permanent financial despair trying to help their kids.

I spent the next several days researching and calling and trying to find out how to get Cale twenty five hours of ABA therapy per week to teach him how to communicate.  I called every agency in the city that provides it.  There are only four.  And these four agencies service an area of five million people.  The first two don't take state paid kids at all.  The third doesn't service people out where we live (they're an hour and a half away - and no, they can't take him if I drive him) and we're on a long waiting list at the fourth.

SARRC has a pre-school for autistic kids that provides twenty hours of ABA therapy per week as part of their pre-school program (it's an excellent program), but it costs roughly $2150 per month to send a child to and they don't take state paid kids.  I'm afraid that our house payment isn't even that high (even if we were willing to stop making the house payment, I don't think a whole year would go by before the bank kicked us out and we had to pay rent somewhere anyway) and our student loan payments have come due again ($1100. per month).  We've been on our fourth deferment, I think, and if we don't pay them this time they'll garnish Shane's wages - not even give us the opportunity to send the money to SARRC first.  So I'm afraid that we're simply maxed out.

So I called SARRC and got the director of the pre-school program on the phone.  I told her I had a bachelor's degree in psychology and a master's degree in education (the two degrees required to work in their school).  I told her I'd work there or volunteer for FREE if they'd take Cale into their program.  She was so wonderful.  She talked to me for over an hour, she offered to evaluate and make suggestions for Cale's public school IEP (which she later did), and she spoke to me softly and kindly because she could tell I was out of my mind afraid.  I begged.  I actually begged.  But there was nothing she could do.

"We're a non-profit," she explained, "and we rely on grants to make the pre-school program possible.  It actually costs us about $2700. per month per child to run the program, but we're able to charge parents $2150. per month because of the grants.  There's no way we could afford to have your son in the program for free, no matter how many hours you were willing to volunteer.  And we have a tiny program.  We won't be hiring anyone anytime soon."

She said I could call her any time and wished me luck. 

Spring break was the longest week of my life.  I didn't have time to play with Alden and Isabel at all.  I dealt with Cale instead - didn't let him get away with breaking things and ignored his screaming.  And when he'd finally stop screaming (stop attempting to communicate) he'd retreat back into his old little stimming world.  I hadn't seen stimming like that in months, but that's what happens when I simply refuse to respond to my son's only means of communicating (screaming and tantruming).  He doesn't communicate appropriately instead because he doesn't know how.  So he just stops interacting with people entirely.

The week went like this.  I ignored the screaming until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (used the opportunity to wash a couple of dishes) until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (microwaved two hot dogs and put them onto the two clean dishes I'd gotten washed) until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (put applesauce and pickles on the plates) until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (realized the hot dogs had gotten cold and the applesauce and pickles had gotten warm - fed these things to Alden and Isabel anyway) until he started stimming, then I pulled him out of the stimming, etc., etc., and so on and so forth.

I'm on my own as far as the ABA therapy goes, and I know how to implement some of it.  I just don't yet know how to find the time to go through the processes required to teach Cale communicative words and actions, all by myself.

I don't really have time today to talk about the processes required to teach Cale (the ABA therapies).  If anyone's interested I could do a blog post on it some time that goes into detail.  Just let me know.  Leave a comment or shoot me an e-mail or something.  But this is a very rough and general description of what it looks like for Cale:

First and foremost, Cale has to be pulled gently out of his stimming and be able to sustain a simple, two way, non-verbal or verbal interaction without becoming so frustrated he starts tantruming.  I have to try to keep him in that space right in between comfortable and freaking out.  It's like a balancing act.  And it can't be interrupted twenty thousand times a day by hot dogs, other kids, constant therapies, dishes, phone calls, etc., or else I can't ever take it to the next level.  This is as far as it ever got over spring break.

Next, he has to be taught how to be taught whatever it is I'm trying to teach him (if that makes any sense), because he doesn't necessarily generalize learning something from one area or activity to another nor does he have much in the way of receptive language (ie - he doesn't understand simple instructions).  This process is long and complicated to explain, and what it ends up looking like depends a lot on what exactly I'm trying to teach.  

Once Cale's been taught HOW we're going to teach him a word (knows what he's expected to do) then he has to see an action (a sign or some other activity to imitate) or a picture of an item (the tootsie pop) and at the same time hear the word associated with that action or item.  "Tootsie," "Tootsie," "Tootsie," "Tootsie."  This is done at the kitchen table because it requires thirty to fifty repetitions at a time - it cannot just be done in the natural, play environment because you'd never get the necessary number of repetitions in during a child-led activity for him to retain the word.  It can be done in the natural environment as well, but not instead of.

Once the word is retained to some extent (and this is tested using distractors) we then begin using the word in multiple contexts and with different demands (i.e. - put tootsie with same, give me tootsie, etc., each command being taught one by one in a systematic way as well).

Once he's done all this and we're quite confident he knows the meaning of a word, then we start using the word across environmental settings to access functional retention (can he use the word in context at appropriate times in multiple environments?  In his bedroom versus in the kitchen for example - he doesn't necessarily generalize recalling "tootsie" in his bedroom and may localize it to the kitchen).  These things  require additional processes (like I said, I can go into all this in more detail another time).  And if we go one whole day without practicing the word, "Tootsie," he loses it.  It's gone.  And we have to go through all the processes all over again.

These are the processes required to teach Cale ONE word.  Then we're supposed to practice each and every single word, each and every single day.

It's not only time consuming, it's excruciatingly slow.  And exhausting.  And I do have two other children to care for.  I'm not sure I could fit twenty hours a week of this in (after his school in the afternoons and in between all of his other therapies) if I DIDN'T have two other children to care for.  I simply can't do the necessary number of ABA therapy hours alone.

After several days of spring break in the pointless cycle (screaming, stimming, screaming) with Cale, and with all of my desperate thinking - worrying about getting him the therapy, trying to figure out how on earth I'm supposed to do it all myself, trying to figure out how he'd be okay if I didn't find an ABA therapist, everything, all of it, trying to figure "IT" out!!! - I finally shut down.  I stopped everything completely and fell into a short, but suffocating, depression.  I got so sad.  Scary sad.  You know?  The kind where you can't breathe.

After four straight days of having an un-showered, crying wife and no clean clothes or dishes, my husband finally said, "Your being "down" is affecting the whole family negatively."

"So?" I replied, "My being "up" doesn't affect them positively."

He sighed.

"You need to accept that Cale may never change," he said patiently.

"I can't.  Time's slipping away.  What if he doesn't get ABA therapy this year?  What if there's no one to do it but me?  What if I can't give him enough?  What if he keeps tantruming or retreating forever and I always know it was because I couldn't give him enough?  It's unbearable.  What if I can't accept it?" I asked.

"Then you'll stay miserable," he answered.

"Do you think that God really exists?" I finally asked him.

He looked at me for a long time.  Because this isn't something I usually have to contemplate.  Then he put his elbows on his knees and started rubbing his hands back and forth, the way men seem to do just before they say something important.  Then he said, "It doesn't matter."

"Doesn't matter?!" I exclaimed.

"No," he continued, "My spirituality comes from acting like God exists, not from whether or not he actually does.  Being attached to whether or not God exists is no different than being attached to the outcome, the end results, of what happens with Cale (being attached to him talking some day).  You can drive yourself crazy with it.  There are just some things we don't get to know for sure.  But I see it this way - if I spend my life acting like God exists, and acting like Cale will talk (keep doing the footwork) then what am I out if he doesn't?  I've had a good life.  And I've done everything I could for Cale."

It took some time to wrap my few brain cells around that one, but I finally got it.  "Act like God exists?" I thought, "I suppose that's better then dying a slow, painful death on back porch sofa."  I pealed my ass off the stupid cushion, opened up my stupid swollen shut eyes, and got into the fucking shower.  It was a start.

Shane and I reviewed everything over the weekend and concluded that we've done all the footwork, done everything we can do for Cale up to this point.  Now we have to leave the outcome, the results, up to God. 

Shane's friend (and spiritual adviser of sorts) told Shane that this is the worst kind of surrender - giving the outcome for a child up to God.  He said it's one we'll probably repeat over and over again with our kids, and that Shane will probably have to accept that a "bout of depression" may follow each time.  My counselor calls it a "perpetual problem."  It's one that comes up over and over again.  In my case, a giving up on having it MY WAY RIGHT NOW for my kids, over and over and over again, each bout accompanied by, in my counselor's words, "a grieving process." 

Thank God for my patient husband and his friend.  I got through another play date with grief without the slightest lecture about the house being dirty.

So I'm "acting" like God exists.  I took Alden to school Monday morning and then put the other two on the bus.  Then I cleaned the house and it felt good.  I rested my brain on the way the oil soap sprayed onto the floor, about the way the mop moved over the wood, and about how nice the floors look when they're clean.  I dusted.  I wiped down each and every item in the house, which slowed me down and allowed to be appreciate and contemplate each object in this house.  That's how I found the painting from the closet.  These neglected objects were in need of my attention I think, and my attention was in need of them.  What a nice day.

I did hire a new hab. worker because I need the help.  She says she has no experience in ABA.  Sigh.  But who knows what will happen.  I've done everything I can do.  Now, "Cale getting ABA or not" is up to God.  If he wants Cale to talk then he'll make it so.  Maybe God will make it his masterpiece.  I don't know, but I'll be busy.  I've got a painting to spend some time with, some feet to get right. 

Maybe this painting will become my masterpiece.  And maybe it won't.  It's a beautiful painting irregardless.  I started working on it right after my very first pregnancy.  I had the miscarriage on August 3, 2002.  How do I know it was a daughter?  I don't actually.  I was only seven weeks along.

Light

"When the great night comes, everything takes on a note of deep dejection, and every soul is seized by an inexpressible longing for light." 

Carl Jung

The great night.  Oh, I wish I could be this deep.  Jung was in a jungle in Africa when he thought of this, studying real things.  The jungles, the cultures, and in this particular instance a celebration of the rising sun.  He describes an incredible sunrise and the incredible meaning of it to the people who lived where he was visiting at the time.  He continues, "within the soul from its primordial beginnings there has been a desire for light and an irrepressible urge to rise out of the primal darkness." 

When I need an uplift, I grab a book (any book) and open it to whatever page I happen to open it to and start reading.  It works every time.  And it's wonderful for someone like me who loves instant gratification.  I told someone once that I need a "right here and right now" kind of God, one I don't have to meditate for a hundred years to access (although that probably wouldn't hurt me either).

I need a God who can surface in an instant.  And it's funny, coincidental, or miraculous (however you prefer to look at it), there's been such a message in every book I've ever picked up in this way.  Even books on physics and algebra (eew!).  This morning I picked up Jung's book and read about longing for light.

Now, I'm not studying cultures around the world.  In fact, the thing I'm forced to study seems terribly isolated and idiosyncratic at times.  That "thing" is myself.  And right now I'm up against what is, so far, one of my darkest demons.  Discipline.  Or, I should say, my lack of wanting to provide it.  

In particular, I don't want to discipline Cale.  I wish I could tell you this is because he's autistic so it wouldn't work, or because I have deep seeded issues around discipline and don't feel comfortable disciplining children at all.  Those are the things I like to tell myself, but they're both total crap.  Cale needs discipline just like any other child.  And my deepest seeded issues with discipline are that my strengths have rarely, if ever, included firmness, clearness, and consistency.

I'm not talking about punishment by the way - about swatting Cale's bottom on Thursday for his prolonged tantrum.  I can do that any old time.  It doesn't require the "light" Jung is talking about.  In fact, I don't know that punishment can survive in the "light" Jung is talking about.  I'm talking about discipline.  It's a whole hell of a lot harder than punishing him, especially since he doesn't react normally to life in the first place.  Discipline requires light.

With Cale I've had to break down and think about things that I just do intuitively with Alden and Isabel.  This is going to sound so rudimentary but I need to process through it.  You, however, are welcome to skip to the bottom of the post if you'd like because this is going to sound like a text book for the next few paragraphs.  It's the good old ABC's of a behavior - Antecedent (what precedes the behavior), Behavior (the behavior itself), and the Consequence (what happens right after the behavior).  This stuff isn't new or profound and is probably in every parenting handbook on the planet, but the ABC's can be very useful for me to remember when I need to simplify things again after my mind has complicated them.

The first thing I have to do when I see a behavior is to figure out the function of that behavior.  This can be tricky and it requires my undivided presence.  What is really going on here?  Why is the child behaving this way?  What is it they're trying to get, avoid, or accomplish with this behavior?

The function of a behavior isn't always as it first appears.  Children don't necessarily think the same way we adults do.  And Cale doesn't even think the same way other children do.  An example - Cale and I were at Walgreen's.  I looked down and saw him slowly pulling a Kusch ball out of a box full of Kusch balls that sat on a low toy shelf.  I automatically thought he wanted me to buy it for him (that's what Alden or Isabel would want).  However, I've learned to stop and watch, to pay attention, and to try and think about things from Cale's perspective.

He quickly put the ball back in the box, then slowly took it out again, then quickly back in, then slowly out.  And I realized that what he was enjoying at that moment was putting an item "where it belonged."  It was almost as if it were a bit risky to take it out of "where it belonged" in the first place, a little exciting, and okay as long as he could quickly get it back into "where it belonged."  If I had taken the ball from him (even if he could see I was purchasing it for him) I would've prevented him from putting it back "where it belonged" (which was the function) and I would've seen a massive unwanted behavior.

This unwanted behavior would've continued for as long as the ball was away from "where it belonged" or until he had exhausted himself from screaming and had fallen asleep.  And every time I would've tried to give him that ball to play with, he would've been reminded that the ball was not "where it belonged" and he would've gotten upset all over again.  He didn't want the ball.  He wanted the ball to be "where it belonged."  I was able to catch an unwanted behavior in the Antecedent stage (ie - before it occurred) because I realized that the function of his playing with the ball wasn't what I initially thought it was.  So I didn't try to buy it.  Instead I said, "Okay, time to go bye-bye."  He happily put the Kusch ball back "where it belonged" and walked out the door with me smiling.

When I do actually see an unwanted behavior and once I'm clear about what the function of that unwanted behavior is, then I have to figure out what behavior I want to see instead.  I have to decide on a target behavior (ie - what specific behavior I do want to see).  Often times the target behavior can act as a replacement for the unwanted behavior, but serve the same function.  Not always though.  Sometimes no just means no.

If the function of an unwanted behavior is to get attention, for example, first I as the parent have to decide exactly what I want the target behavior to be.  Do I want the child to seek attention appropriately right then or do I want them to be able to leave me alone for twenty minutes?  Sometimes unwanted behavior looks appropriate.  A child will get your attention in an appropriate manner four hundred and fifty thousand times in one hour.  Maybe this is one of those times he/she will have too sooth/entertain themselves for a little while.  I have to figure out exactly what the problem is and decide exactly what I want to see instead.

I have to get very clear with myself exactly what behavior I want to see and not have any reservations what-so-ever about it.  I can't go changing my mind, my expectation, mid-situation.  It's not fair to my kids.  It can't be a guessing game if it's to be effective.  I have to be consistent.  So I first have to make a firm decision on what target behavior I'm after, then I have to clearly communicate it or teach it to my child, and then I have to insist on it all the way through that particular situation.

If the function of a behavior is to get attention and the target behavior is for them to do it appropriately, then I might tell them I expect calm, grown-up words instead of whining, crying, or misbehaving to get attention.  I tell them as clearly as possible, "You can only get my attention by using your grown-up words (saying "excuse me" instead of interrupting, talking quietly, whatever is appropriate for the child)."  We might have a brief discussion about what that means exactly, but then that's the expectation.

It's most effective at my house to avoid the unwanted behavior from the Antecedent (before unwanted behavior occurs) as often as possible, so I try to pay attention to my kids each and every time single time there's any appropriate seeking.  "What a wonderful job asking so nicely!" etc.

In an ideal world a child would have so much attention already they'd never have to seek it negatively, but alas we don't live in an ideal world.  When the unwanted behavior (whining, crying, or misbehaving) happens, then I have to address it via Consequences.  In a nut shell, I can't let the whining, crying, or misbehaving work to get attention.  I can't allow attention of any kind to be the consequence of the whining, crying, or misbehaving or else the child will learn that whining, crying, and misbehaving are, in fact, very effective ways of getting attention.

I have to completely and totally ignore any whining, crying, or misbehaving because getting attention is the function of the whining, crying, or misbehaving.  If the child is little and still needs to learn the target behavior (if he/she doesn't know it already) then I also have to teach the target behavior (wait until the child is tugging on me and crying into my face, then, "I'm waiting to hear your calm, grown-up words" might be my initial prompt.  Then the prompting is slowly faded out until I'm confident the child knows what to do).

If they know what to do and still won't do it (if it's actually just defiance) then I just don't given them any attention until I see the target behavior (calm, grown up words).  If they start doing something dangerous or start trashing the house then I intervene physically without words or eye contact (as little attention as possible) until they decide to try the target behavior.  Oh, this makes them really mad.  With my kids, there's always an increase in the unwanted behaviors first while they test me to see if I'm really serious.  Then, suddenly it seems, I start seeing the target behavior most of the time.

Here's an example of using the ABC's with Alden and Isabel:  I want Alden and Isabel to sit at the table to eat their food.  With three kids it's too messy, nor is it safe, to allow them to run around and eat food wherever they want.  First, what's the "function" of not sitting at the table?  Sitting at the table isn't particularly fun for them so they want to avoid it.  So the function is avoidance. 

The target behavior is that they sit at the table to eat.  And since the function is avoidance, avoiding it absolutely isn't an option.

Again, it's most effective in our house to avoid an unwanted behavior at the Antecedent rather than wait until after and provide consequences, so we have a meal time routine.  Food is not allowed unless it is "meal time."  Meals are at certain times (roughly) every day and the kids know exactly what's expected of all of us (bottoms on the chair, feet on the floor, etc.) during meals.  We all sit down and eat together and Shane and I are right there to enforce the expectation.

We've had meals where someone has screamed at the table for the duration of dinner time, but because we were clear about our target behavior which was sitting at the table (not being quiet) we didn't let them leave because of their screaming.  If we had then they would've learned that screaming is an effective way to get out of sitting at the table.  Before long, everyone realized how much more pleasant it was to cooperate.  We also have a routine for meal completion - we say we're finished, ask to leave, put waste into the trash and plates into the sink.  This is required of Cale as well.  It works most of the time.  But sometimes unexpected instances do occur and we see unwanted behavior as a result, making an actual consequence unavoidable.

I give Alden and Isabel ice-cream cones and tell them to sit at the table with them.  I'm tired and busy with Cale and can't sit with them.  Moments later I find them running around in the living room with their ice-cream cones.  They've been ignored all evening and I didn't catch the behavior at the Antecedent (didn't foresee what would happen if I didn't sit with them) so now I've seen unwanted behavior and I have to implement a consequence.

But what's the right consequence?  What I've done in the past has been to take it personally and scold them, "I've told you a million times to sit at the table with your food!  Why don't you listen to me?  I've explained to you over and over why you can't run around with food!  What are we going to do to get you to sit down while you eat like a civilized person?!" etc., etc.

It seems to work too, in the moment.  They quickly run to the table with their ice-cream and eat in tears because they feel like bad kids.  And I've become someone I don't want to be.  A bitch.  Scolding them is nothing more than punishment, an emotional spanking.  It works to distinguish the immediate behavior but it doesn't involve any real learning so the effect, I'm afraid, is usually temporary.

So what's the correct response if I really want them to eat at the table?  Oh, it's the one I HATE to do.  I'd rather yell.  I'd seriously rather punish them and then let them have their ice cream at the table.  "They never get treats," my head will tell me, "they have it so tough, no attention, a distracted mother whose spread too thin, the poor things deserve this ice-cream.  Plus, those ice cream cones were $5.00 for a box of six.  Do I really want them wasted?"  This stuff isn't necessarily easy on the mind, but the required action is really very simple.

Usually, although I'm not perfect, I do the right thing.  I quietly and without saying a word take both ice-cream cones and drop them into the garbage can.  Much more effective and I haven't had to yell, scold, question listening skills, or be angry in any way.  I haven't had to be someone I don't want to be.

It's a lot easier for me to like my kids when I can continue to like who I am in relationship to them, so I try to implement consequences with as few words as possible.  The only explanation I may offer is, "You knew the rule."  And what's so great about this is that they don't have to feel like bad kids.  I can even comfort them, feel sorry for them about it, tell them I love them and that they're wonderful children.  I can even tell them that the "choice" they made wasn't a "bad" choice.  It simply brought them a certain result (one they didn't happen to want).  There's no value judgment what-so-ever.  I can hug and love on them all I want!  But I can't give them the ice-cream.

It goes against every single natural inclination I have!  But I do it anyway and my kids have learned to sit at the table to eat, even when I'm not watching.  They really are well behaved kids.  Too well behaved sometimes I think.

This all sounds great doesn't it?  And with Alden and Isabel I can see this stuff clear as a bell.  But with Cale I can't see it two inches in front of my face.  Here's a rough sketch of what Cale's behaviors look like right now.

Long bouts of continuous screaming beginning with the slam of some beloved household item.  He runs around knocking things over - small tables with lamps on them, plants, chairs, pulling the cushions off the chairs and sofa and throwing everything he can get his hands on.  He throws water glasses, lamps, shoes, toys, straight at the heads of his brother and sister, at my head, he hits me, pinches me, you get the drift.

He's broken his closet doors again, many of his toys, and the screws holding the lock onto the outside of his bedroom door are slowly working their way out of the cheap, soft particle board the molding is made of.  My old houses always had wood molding that you couldn't pull a smooth nail out of without the use of a hammer and propped up foot.  But the lovely, fake, Harmony Lane house is just full of things that look sturdy, but are in reality as flimsy as the props on a stage.

He throws his entire plate of food on the floor at the introduction of every single meal, sending a million cereal pieces into the center of a large splat of gooey fruit smoothie followed by hamburger, water, raisins, cut up pickles, and shattered glass.  He's fast about it too.  He waits until I get up or turn around for half a second to grab the ketchup or answer one of Alden's questions, then he quickly pushes his drink and plate off the table.

As I desperately grab for paper towels, or regular towels, neither of which stay anywhere near the table for some reason (oh that's right, they're all covered in cereal, dried smoothie, and broken glass on the laundry room floor) he throws his brother's plate, then his sister's, and then mine, and if I'm still trying to keep the children out of the pile and clean it up, then he starts in on anything else that's around - movies, items of clean laundry, toys, shoes, therapy aides, etc. and throws them into the pile.

His sister, who has big time dietary issues of her own, crawls under the table and cries with her hands over her ears while Cale screams and throws things.  She can't stand loud noises, and Cale has again become virtually anything but.  I finally lost my mind on Thursday and swatted his bottom, becoming someone I don't want to be.  And I've been beating myself up inside ever since.

Jeeez, do you think the unwanted behaviors have been bringing Cale what he wants?  You bet they have, to some extent anyway.  And someone finally came along to show me where I was snagged.  This post has gotten too long.  I'll finish it up with the next one.

Light - Part 2

"What is the function," Cale's OT asked me Tuesday afternoon, "of Cale's recent behaviors?"

Attention?  Avoidance?  Communication?  He hates his food?  He's crazy?!  I've been with him all day every day for five days in a row and I have spring break coming up!!  I DON'T KNOW ANYMORE!!!!

"He's communicating," I said yawning, exhausted.

"Communicating what?" he asked.

What's going on in Cale's life at present is exactly what keeps me from wanting to discipline him.  First of all, he's hurt and angry and he has no words with which to express it.  Therefore, I've been allowing him to communicate this in the only way he knows how - trashing my house.  His hab./respite care provider quit.  She had spent twenty hours a week with Cale for almost a year.  Now she's gone, he misses her, and he's sick of me.  It was my fault.

Cale needs intensive, daily ABA based therapy (from what I've been told - twenty hours a week or more is required if it's to be very effective for someone with a communication deficit as profound as Cale's).  However, finding a hab. worker that's already trained in ABA is difficult, so SARRC (Southwest Autism Resource and Research Center - God bless them) has been sending a therapist over to our house once a week for three hours to train our hab. worker and myself how to do ABA with Cale.  And we're supposed to do this ABA therapy with him every day - we get ten hours a week of hab. during which our hab. worker was supposed to be doing it, then Shane and I have to pick up the other ten on our own time in the afternoons and evenings (this on top of all his other therapies, homework, dinner, etc.).

My hab. worker had spent almost a year basically just babysitting Cale and suddenly she was required to show up at particular times every day to do intensive, difficult to learn ABA therapy that Cale tends to fight with every fiber of his being.  It isn't fun.  In fact it's outright exhausting.  There were many days I didn't say anything when she wanted to take him to Walmart instead of doing ABA therapy - we both dreaded it and wanted to avoid it.  But one day, she came to do hab.  She rushed in the door twenty minutes after she was supposed to show up for work and asked me, "Do you mind if I just take him with me?  I have to pick up my kids from school."

I had let this type of thing happen over and over again, yet in that particular instant I had a "moment of clarity."  This wasn't going to work.  So I had a heart to heart with her and explained that this ABA therapy may be my son's only chance at communicating some day, "You must be wondering why I'm suddenly being such a freak about this.  We need you to use the ten hours of hab. a week doing the ABA therapy.  Shane and I are already struggling to find the time to do the other ten a week we have to do on our own.  Please understand, we all have to take this very seriously.  This is my son, my baby, and it may be his only chance at learning how to talk."

She did get serious about it and did it every day.  She made it almost two weeks before she quit.  I learned during my first year of teaching high school (years ago) that it's better to start out strict and then lighten up as you go rather than to start out light and then try to tighten up once you see the flaws.  It's a lesson I'd forgotten.  I messed up and now Cale misses her. 

The other things going are Cale's eating problems.  I'm looking for a feeding therapist but they are very hard to come by.  We're on several waiting lists.  Cale has oral problems - it's his nerves or the processing of oral information or something like that.  I don't exactly understand it, but basically, he can't feel food in his mouth the way he should.  And when a food doesn't work out right (he tries to swallow too soon because he can't tell it's not chewed up all the way - he chokes a lot, I'm an expert at the Heimlich maneuver - or he bites his tongue and cheeks because he can't tell exactly where the food is at in his mouth, or I've made a mistake and the food is simply too hot) he completely stops eating that particular food.  He won't touch it again.

So what's happened is, very slowly over the last couple of years, he's become more and more rigid about what he'll eat and has had less and less practice eating a variety of foods.  So the "oral problems" have become worse and worse.  Now if I do get him to try a new food, he chews until it turns to mush in his mouth and then he starts gagging - not necessarily because he can't control the food to some extent, but because he thinks he can't.  He triggers his own gag reflex.

He's officially down to crackers, Rice Chex, bacon, and raisins.  These he feels he can control completely.  The problem is that his cholesterol has spiked (if you don't eat any real fiber it raises your cholesterol quickly - just an FYI).  Also, he's sick to death of crackers, Rice Chex, bacon, and raisins, but won't eat anything else because it's so unpleasant for him.

The doctors and therapists have all recommended I keep putting a variety of foods in front of him, both preferred and non-preferred foods.  They want meal time to be as pleasant as possible for Cale (for him to still eat the only four remaining foods he can tolerate) but they also want him to be exposed to a variety of foods.  "He must be desensitized to different foods," they say.  How can pleasant and desensitized both be in the same set of directions I would like to know?

So I put a variety of food in front of him at every single meal time and he has never ceased to throw the entire plate onto the floor.  We're officially sitting at the table and holding his plate down while he eats, or screams, depending.  So the other two kids don't get juice, or spoons, or whatever they ask me for, "Mommy's busy with Cale (again).  You'll have to get your own juice, even though the damn jug is bigger than you are.  Good luck!"  I really did come to my wits end with this whole situation. 

I explained every bit of this to the patient OT.  It was necessary to discover the exact function of Cale's behaviors, and of mine.

"Cale's has some oral problems," he explained, "but I think his "not eating" is at least partly behavioral.  He should practice eating different foods.

"And how the hell am I supposed to get him to practice eating different foods?  He won't EAT different foods," I reminded him.  The OT is the person, after all, whose supposed to deal with the sensory processing issues.

"I'll show you," he said, and he did something I couldn't believe.  He sat Cale down with peanut butter (a true offender) and crackers and raisins (preferred foods).  Cale wouldn't open his mouth so he smeared the peanut butter on his lips.  He had to smell it, to feel it on the outside of his mouth.  Then he spread the peanut butter onto a tiny piece of cracker and literally pushed it into Cale's mouth.

Cale cried and gagged and screamed and gagged.  Then he gave him a raisin which Cale took thankfully for some relief.  Then, Cale had to eat another tiny piece of cracker with peanut butter on it.  The OT actually pushed it into his mouth every time.  Cale screamed and gagged and I found myself thinking, "He's force feeding my son."

Then, my son looked at the OT and said something ALL of his therapists (and me and Shane) have been working on with him for MONTHS.  We've been trying to get him to say, "NO," rather than throw his plate of food on the floor FOR MONTHS.  The OT wasn't giving him the option of throwing the food on the floor and the OT kept pushing the cracker/peanut butter into his mouth, so he looked the OT in the eyes and said, clearly and with perfect intent, "NO!  NOOO!!"

This was a huge achievement, however because the "target behavior" wasn't communication (the "target behavior" was that he experience the food) at that particular moment, he couldn't honor it.  I knew that, but as I watched the OT continue to push tiny pieces of cracker/peanut butter into Cale's mouth in spite of his communication attempt, a great revulsion welled up in me.

"I can't stand this!" I thought, as massive, sharp points of mama grizzly bear fur began pushing it's way up through thick, psychic skin.  Adrenalin, shaking, tears, the whole nine yards.  Physically I could've pushed over a house.

My mind went crazy, flooding instantly with a thousand rationalizations.  It was like I thought if I could just come up with enough of them all at once, maybe I could pick one sufficient enough to alleviate any guilt about stopping him from force-feeding my son, "You can't force feed a kid!  You just put food in front of a kid that's all!  We're supposed to keep it pleasant!  I can't just sit here and let him do this!  He's gonna expect me to force feed him next!  I can't do that!  I can't do anything for Cale!  His own mother is right here watching this spectacle and not keeping him safe!  How can he ever trust me again?!  I'm a horrible, horrible mother!!!"

Cale was screaming and gagging and crying and saying, "NO!"  My heart beat so fast, my chest hurt, my eyes swelled up so fast.  I sat there holding back tears and standing, as if on my tongue, on top of an instinct more powerful than anything I'd ever experienced before, keeping it from advancing full force onto this guy who was only trying to help.  I really couldn't stand it for one more second.

Thankfully, I suddenly thought to pray.  "God please help" was the only thing I could think.  And I was suddenly brought into the present moment.  More than that though.  It was like I was looking through a tunnel, a telescope specifically designed for that exact moment in time.  Everything began moving in slow motion.  I could see it clearly.  The situation didn't change a drop, but it stopped upsetting me instantaneously.  My emotions just switched off.  And the situation suddenly became fascinating to me, interesting - like a lecture in college.  And I was able to watch exactly what he was doing so that I could repeat it.

After roughly a minute and a half (if that long), Cale was taking the bites right out of the OT's hand and eating them without assistance.  Then the OT stopped and looked at me.  He had tears in his eyes.

"I couldn't honor the "NO," he explained.

"I know," I replied.

We sat silently for a few moments, Cale's chewing the loudest thing in the room.

Then he continued, "If I thought he couldn't physically handle the food, I wouldn't do this.  But I think his "not eating" is mostly behavioral.  Yes, he has some oral problems.  But the way to cope with those is to practice eating different things.  And it's going to have to begin with some desensitization.  Do this every day for five minutes at lunch time when you're alone.  Don't do it at meal time with your family.  Honor NO at every other time except for the five minutes during lunch every day, a time he needs to understand is adult, not child, led.  Avoidance isn't an option for that short five minutes at lunch time every day.  He'll come to expect it and see as routine and he'll figure out that it's really not so bad."

I sighed.

"You require Alden and Isabel to eat non-preferred foods before preferred ones don't you, vegetables before desert for example?  Cale's no different."

He is right.  The function of the behavior is communication and avoidance - I communicate that I don't want the food by throwing the plate AND I avoid having to eat it by throwing the plate, screaming, gagging, etc.  And I've taught him that these behaviors are effective in both functions.

If Cale continues down this road then physical intervention will be in his future anyway so I might as well intervene now.  The OT will be doing some other things also to address the oral sensory processing, but we decided it'll be my job to make him eat non-preferred foods at the designated time every day (alternating with bites of preferred foods for relief).  I'll do peanut butter for two weeks, first on a crunchy (preferred) food like a cracker or a piece of cereal and then a spoonful alone.  After two weeks I'll do another food at that designated time every day, then another, and another, etc.

Next we moved on to addressing the tantruming.  We never have to wait long for an opportunity.  Cale fell off the swing and fell six inches onto the ground.  He started throwing a huge fit.  We checked him over to make sure he wasn't hurt and came to the conclusion that it had probably scared him more than anything.  He hit me when I tried to pick him up, so I left him on the ground.  The OT asked me, "What's the function of this behavior?"

"Well, he could be hurt," I answered.

"I don't think he's hurt.  And even if he is, being hurt isn't a reason to hit someone," he said.

"Well, he's probably just mad because he's fallen off the swing," I said, "It's communication again.  But the hard part for me is that I can't communicate a replacement (target) behavior to him in a way he'll understand.  And he can't communicate at all!"

Aaaww.  And we have our snag.

"He's communicating clearly to me," he said, "Now let's communicate to him that this isn't the way to communicate."

Cale came inside and started trashing the room we were in.  We ignored the screaming but it wasn't appropriate to simply ignore the trashing.  Cale pushed over a chair.  The OT pulled Cale over to it and said, "Pick it up."  He took Cale's hands and made him pick it up.  Cale got even more mad and threw a bowl of cereal that was on the table.  The OT said quietly but firmly, "Pick it up."  He set the bowl upright and Cale put all the little cereal pieces back in, screaming at the top of his little lungs the whole time.  Then he ran over and pulled a cushion off the couch, his upset increasing with intense speed.  I went over and pointed at the cushion, "Pick it up," I said.  He picked it up, put it back, and threw himself on the ground screaming.

I said to the OT, "I could stop this right now by prompting "hug."  He'd say it and get a hug and the tantrum would stop.  Maybe."

He asked me, "Do you want to teach him that this is an effective way to get affection?  Do you think this is an effective way to get affection?"

"Well, kind of... yeah," I said, as I thought about the tantrumy blog-post I'd just published just hours before.

He was kind enough not to actually say, "No wonder you have a tantruming five year old."

We continued to talk, more to distract me from Cale's screaming I think.  And when Cale threw the next thing I went over and said, "No throw.  Pick it up."  He picked it up and put it back and, realizing he wasn't going to get away with acting this way (whether he knew of a better way of communicating or not), he tried even harder.  The OT said, "Remember, it's going to get worse before it gets better."

Cale screamed harder and threw more and more things.  I made him pick up each one of them without the slightest hint excitement in my voice or the slightest sign of affection.

Finally, Cale's cry went from being angry to being sad.  Then, he stopped for a second to take a breath.

"Good quiet Cale!!!!!!!!!!" the OT said.  Cale walked over to him and tried to get into his arms.

"Up?" he asked.

"Uuu," Cale said, so the OT picked him up and hugged him tightly.

Cale continued to cry, but didn't scream or throw anything, for another forty five minutes before he stopped. Ugh.  This is what it's like to discipline Cale.

What I've had to be reminded of is that Cale will not become motivated to do the hard work it's going to take for him to learn to communicate appropriately as long as his current, disruptive behaviors are effective.  And I'm the one who has to make sure they're not effective.  I'm also learning all about appropriate non-verbal communication.  Taking my hand and at least trying to say, "Come here," which is coming out "baaaul er" and leading me to things rather than screaming, handing me a cup for water instead of screaming, etc.

I just thank God we have people in our lives who can reign it all back in again, and a God in my life that help me stop and see if I just ask.

The darkness Jung talks about is, "a darkness altogether different from natural night..."  I know all about that - mis-perception, self-centeredness, laziness, confusion, anger, guilt, fear, all the things that keep me from seeing what's really going on.  But "The moment in which light comes is God," he says, "That moment brings redemption, release... The longing for light is the longing for consciousness."

It was a lot for one therapy session.  And when Shane got home from work I laid down on the couch without so much as a small explanation.  Shane made dinner and let me sleep through it, God bless him.  And after dinner he came into the living room and woke me up, "Sweetie!  SWEETIE!"

"What," I answered.

"I handed Cale a piece of Granola and he ate it!  And when I handed him the next piece he said, "NO!"  He finally said NO!!"

I smiled into his excited and magnificent green eyes, "That's wonderful sweetie."