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."