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Posts Tagged ‘OCD’

Is your child difficult to motivate? Does your child have big emotions or difficulty communicating in the usual ways? I remember the long years when my Peter couldn’t talk, couldn’t hold a pencil, and didn’t want to play,  when his only sure motivator was food. To add to that, in his teen age years, as often happens, his emotions exploded with massive dysregulation due to OCD and anxiety. I used to think that the arts were only for other kids, less impacted with autism, or maybe savants. But I’m telling you, I was wrong. It turned out that the arts played and continue to play an important role in Peter’s development. The arts may actually be a part of the solution for your child as well.

How do you begin? How do you lay a foundation for creativity? I believe  that for our family, doing hours and hours of floortime laid the foundation. Now mind you, more often than not, Peter didn’t look like he enjoyed it; he looked like for all the world all he wanted to do was withdraw and be left alone. We doggedly proceeded as a matter of faith. During the long years Peter had almost no language, we did a lot of play centered around reenacting emotionally charged events that happened in Peter’s life with stuffed animals or an analogous theme, at first demonstrating a more adaptive reaction, then eventually as he got more and more into it, letting Peter create his own new endings. It wasn’t until years later that I asked Peter what he thought of those many hours of DIR, and he said he felt like “Cinderella at the ball.” (see Profectum.org for parent training resources, especially the new free “Parent Toolbox”)

Once Peter started using a Vantage, an icon- based augmentative communication device, we added the habit of journaling and reflecting. See this little icon?  I would carry it in my pocket. On walks or outings, I would pull it out, and ask Peter, “So what do you see? hear, touch, smell, taste? ” whatever made sense, depending on the experience.  Later in the day, I’d pull it out again or draw it in reflections, during bedtime prayers or in conversations with his dad, asking “so tell Dad what we did? or how did you feel about that?”, so he could enjoy the experience, savor it,  thoroughly all over again. We would reflect on negative experiences too to reprocess them. So Peter built his foundation of emotional self awareness, perspective-taking, and internal standards at the same time he built his language. In fact, I’d go so far as to say that he put in the hard work of learning language because it was so emotionally relevant to him to talk about both the bad and good times of his life.

If you want to see the steps laid out methodically for building this kind of foundation using floortime and reflections for a child with minimal language skills, they’re all in a book I wrote in 2012, entitled “Teaching Your Child with Love and Skill: a Guide for Parents and Other Educators of Children with Autism, including Moderate to Severe Autism,” published by JKP.

What has happened in the 5 years since then? I would say an explosion or revolution in development. What made that possible was Dr. Ricki, who introduced Peter and me to Darlene Hanson, a speech pathologist from REACH who introduced Peter to supported typing (http://www.reach.services). Supported typing is a topic for a future conference; for now let me just say it is a way to support the child in all areas, and as Peter recently put it, “Darlene snared my fleeting thoughts, enabling my thoughts to get out and stand on paper rather than scurry for cover.” Typing gave Peter the means to show what he knows, such that he was able to eventually transition to diploma tract. Even more importantly, typing allowed him to express himself and develop his creativity with the written word, with the efficiency, speed, and flexibility that icon-based AC could not provide.

His poetry today (see “My World as a Poemhttps://www.amazon.com/dp/1544634110/) is very much a development upon our old journaling habits- he writes about his daily experiences and inner life. It came providentially at the time his OCD and anxiety exploded, as often happens in the teen years. So Peter had an outlet for and a tool to handle his emotional dysregulation in writing. Creative writing has been critical for Peter to process and handle his big emotions, and conversely, because necessity is the mother of invention, the big emotions have been a  driving force behind the development of his creativity. The illustration shows how stress can trigger the amygdala (lower brain) to activate a fight or flight motor response, but the frontal lobes (upper brain) may learn, with nurturing and practice, to modulate that response, especially using creativity as a strategy.

 

 

 

 

Let me show you how this works in a real life example.

Two weeks ago, Peter developed a new OCD. He discovered an extra long rubberband, which he enjoyed stretching and plucking in the usual way. But then he started holding it between his teeth, letting the end dangle like a long string from his mouth. I didn’t want him to swallow it, nor look really odd to others. But first thing when he woke up in the morning, he started lunging for the drawer where he had placed the rubberband the night before.

I sat between Peter and the drawer.

“Peter, slow down! Is something driving you crazy?”

Peter tried to reach past me for the drawer, that crazy, driven OCD gleam in his eyes.

“Ok, calm down. Take a deep breath. That’s it. Come on, tell me what’s going on. How badly do you need to do this, on a scale of 1 to 5?”

Peter typed, “4+,” as he perseverated, “Rubber band! rubber band!”

“Remember Peter, if you feel that driven, this may be an OCD. If so, it’s probably telling you some false thought like, ‘If you don’t get that rubberband, you’ll explode.’ Right? Ok, how about we slow down a minute, and just talk about it first. So tell me, what’s so appealing about that rubberband? What would you do with it, if you could get to that drawer?” Peter started typing about all the great qualities of a rubberband. Always fun to think about a compulsion. After he got his thoughts down, I suggested we play around and divide the thoughts into short lines of verse. We picked out the most vivid vocabulary,   made lists of words that rhymed with them, then rewrote the corresponding lines to get the rhymes  in at the end. After one stanza, I asked another question,

“But what’s the down-side of holding that rubberband in your mouth?” We brought in a little perspective-taking and reasoning as Peter repeated the process of getting down his thoughts, then organized them into the structure of poetic form. At this point, he was already into the rhythm of the game, and willing to continue, thereby almost unconsciously beginning the process of resisting the OCD. By the time we finished the second stanza, Peter’s upper brain was now engaged, warmed up, and had come to the conclusion that cons outweighed the pros and that longing for the rubberband did not make sense and therefore must be a compulsion. So finally I asked, “So Peter, you have a choice. If this is really an OCD, what does Dr. Gwen say to do? That’s right, take a baby step away. What are your strategies? That’s it, put it away and distract, or if that’s too hard, turn the mad dog into a sled dog and use the compulsion as a reward. (We often picture OCD as a big dog companion that Peter has to learn to live with, so we use that image of harnessing the motivation of a compulsion to get work done a lot.) What do you think you can manage?”  We repeated the same process of writing, dividing thoughts into verse lines, creating rhyming lists, and editing.  Here’s Peter’s finished product:

Rubberband, rubberband, elastic and round,

Rubberband, rubberband, sing your song.

“Boing,” stretch, dangle, and pull,

I can’t seem to get enough “boing!” to the full.

 

But holding it between my teeth,

Is not a thing to really eat.

OCD, the very picture I look,

Dangling like a fish on the hook.

 

So instead of keeping you in my head,

I’ll use you to get out of bed.

Mom, put it in my bathroom cup.

I’ll chase it there, and thus get up.

“So, Peter, did you enjoy writing your poem?”  I could see it in his face, the relaxation of the muscles, the crazy, driven gleam diminished from his eyes.

“Yes,” he typed.

“How did your stress level fare?” We use an emotional thermometer, scaled 0-5.

“From 4+ to 3+.”

“So how powerful is your creative power?”

“Very.”

There’s an addendum to this story. Once Peter put his plan into action, and got out of bed, I lined up his soap, toothbrush, and mouthwash in a row, putting the cup with the rubberband in it at the very end, so he had to go through the sequence of his self-help tasks first to get it. By that time, so much time had passed, that he was at a different place in the compulsion wave. It was passing, not totally, but he was at a better point. So it was time for another negotiation.

“Peter, how long do you think you should get the rubberband? You don’t want to lose all the ground you’ve gained, so it probably shouldn’t be too long.”

“Ten minutes,” he replied.

“That seems a bit long to me. How about you keep it as long as you don’t put it in your mouth. If you do, I take it away.”

Peter thought a moment, then abruptly took the rubber band out of the cup and placed it back in his drawer and walked away to the kitchen for breakfast.

So rather than lose control of the rubberband, he decided to hide the visual trigger and not engage in the compulsion at all. It was the best possible outcome. Peter’s choice, to carry out his own initiative, a strategy he came up with himself, that did not carry out the compulsion and therefore not reinforce it or strengthen that OCD circuit in any way, all while exercising his frontal lobes and strengthening his brain connections top to bottom (point to first stanza, slowing down the reactivity), left to right (bringing in reason), so executive function could come online (point to third stanza). You could just watch those synapses grow, and watch the development of emotional regulation.

So my question to you is, could there possibly be anything more therapeutic than the arts? With the arts, the child has a positive means to channel and let go of all the anguish inside, to fully express, understand, and process his emotions, positive and negative. Those brain glitches may be companions our children have to live with the rest of their lives; how much healthier it would be to learn to accept, channel, and transform negative emotion, rather than simply try to squelch it all the time. This is by cartoonist Matthew Inman. Peter and I love this image, which has become our modus operandi for dealing with emotional dysregulation.

dong-combat-your-monsters.jpg
M. Inman

 

 

 

That’s one of the most important lessons Peter and I learned from DIR. Negative emotions are not all bad. We can learn not to be afraid of nor to  make an enemy of those big emotions. They can serve as powerful motivators for development.

 

 

 

 

I encourage all of you to explore the arts as the integrating and transforming channel that may turn emotional challenges into the development of emotional regulation, creativity, self-awareness, and self-esteem. And to make something potentially beautiful and enlightening for others in the process. With art, you can be yourself, at your own pace, and there are no restrictions or disabilities in the imagination. It can’t get much better than that.

Don’t take my word for it. Peter wrote this poem, revealing how the arts have transformed his life. (The poem is symmetrical, with the last four stanzas corresponding to the first four in reverse order.)

I am autistic,
Greedy eyes and ears,
Wet in the rain of sensory deluge.

I’ve been a prisoner,
Captured in silence,
Voiceless and unintelligible.

I’ve been a slave,
Strapped to my obsessions
Ordering me to do nonsense, perverse to my character.

I’ve been a paralytic,
Feet stuck to the street,
People swirling around me.

I’m a listener,
Watching and receiving
Like a peaceful tree. 

I’m a tiger tamer,
Harnessing  the energy of my compulsions
To write one more line.

I’m an escapee,
Flying my soul like a kite
On a string of words.

I’m a poet,
Exploring the world with keen senses,
Sharing with you a bite of fresh air.

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The refrigerator door stood open, as Peter hesitated. He handed me the chicken, then snatched it back and put it into the refrigerator, while handing me the fish. Then it was the leftover rice in the pot with an abrupt switch to the leftover rice in the tupperware box. He finally handed me something he wouldn’t even eat after I microwaved it, but instead ran into the family room. He turned on the TV, then quickly positioned a chair facing the corner, back to the TV. He ran down the hall to his little brother Luke’s room, and returned with one of the boxes Luke stores Pokemon cards in (cards emptied out), and started tapping and turning it. I firmly took the box out of Peter’s hands and hid it under the sofa.

“Peter, slow down! What’s going on?”

Peter’s eyes burned as he reached for the box and gasped, “Bok, bok!” (for “box, box”)

“Ok, calm down. Take a deep breath. That’s it. Come on, tell me what’s going on. So what happened there at the refrigerator? Can you write about it?” As Peter started squeezing my hands, I said, “You will get that box. But first let’s put some brakes on this. Remember, when you have an intense OCD, what does Dr. Gwen tell us we can do to delay it?”

Peter typed, “I can harness this sled dog. I can let myself have the box if I finish.”

I told him that was a great idea. If only he would write down his thoughts about what was going on at the refrigerator, then with the chair, then with the hand squeezing. Knowing he loves poetry, after he finished that, I gave him the challenge of putting it into verse, and adding rhymes. After he completed each stanza, I asked him to rate his OCD intensity as higher, same, or lower. I kept hoping he would say “lower” as writing bided time for us. Unfortunately, he kept saying “Same.” I tried to make the best of it, “Hey, you see, it’s not getting worse!” Here are Peter’s first three stanzas (English sonnet form abab, cdcd, efef).

Give me chicken, no let’s not.

Give me fish, no, another mistake.

First the rice in the box, not it’s the rice in the pot.

OCD picks the one thing I hate.

 

The chair in the corner is where I must sit,

Facing away so I can’t see the TV.

It doesn’t make sense, not even a bit.

No matter, OCD’s punishing me.

 

I’m squeezing your hand to wring out my pain.

Give me the box you put under.

I’m taking deep breaths but still going insane.

OCD rips and tears me asunder.

 

Finally after the third stanza,  I asked Peter to rate his OCD. He typed,

“The box compulsion is surprisingly better,

As I delayed it while writing this letter.”

(That couplet completed the 14 lines of an English sonnet.)

“Wow, Peter!” I exclaimed, look at that! See how strong your creativity is!

Peter typed, “Strong enough to resist a 5/5 compulsion.” All lit up, he said with a big smile and gesture, “Bok, peez!”

“At this point, you have definitely earned that box several times over. But I want to know what you, Peter Tran, upper brain, really want to do now. Because OCD has been bossing you around all night and made you pick something you didn’t like out of the refrigerator and sit in a punishing corner. Wouldn’t you just love to slug OCD back one more time? Why not eat a piece of delicious piece of pizza first for dinner, and then get the box?”

I held my breath. I truly was totally prepared to let Peter take the box from under the sofa. Instead, he did something remarkable. He stood up and slowly walked to the kitchen. At one point he stopped, and started to turn back, but I positioned myself between his body and the sofa. Smilingly I encouraged him, “You are doing great, Peter.”

Peter turned abruptly back to the kitchen and headed through the door.

I’m sharing this story because I want to encourage you kids suffering from OCD and you parents trying to help your children deal with it. It may not be possible to completely change the wiring glitch that causes OCD, but you can build up the attention shifting and compulsion inhibition skills required to achieve a long enough delay for the compulsion wave to wane, and the frontal lobe engagement to move that broken record on a different track. Use deep breathing and the hope of eventually getting to do the compulsion to create some relief from anxiety. Help your child to recognize that it’s the intrusive thoughts of OCD, not his own, that are making him feel he needs to do something that doesn’t make sense. Distract him, help him shift attention away by engaging the upper brain/frontal lobes into an exercise you know he likes (In this case, I know Peter loves to write). Support him to initiate a strategy like delay that you’ve talked about together beforehand, and to self-monitor his state of being so he can watch the intensity of the compulsion fall and be encouraged by his own success. Doing something creative is especially powerful and rewarding because the child can create his own ending to the story; if he pretends to be successful, chances are greater he will become successful by being able to process what’s happening and envision a positive ending. Be transparent in your coaching, and tell your child what you are doing and thinking so that he can understand, want to cooperate with, and imitate it. It’s a goal for him to learn how to talk to himself in the same way. Most importantly, signpost his accomplishment. Be the banner bearer of his success. As Dr. Gwen tells us, the one thing that equips your child best to combat intrusive thoughts is the realization that “I can do this. I do have a choice.” That self concept and self esteem is built through accomplishment. So whatever progress your child makes, whatever small step in the right direction he is able to accomplish, even a baby step, proclaim it and rejoice! Developing emotional regulation is a slow process, but with each victory, another inhibitory or attention shifting synapse is born.

Admonition by Dr. Gwen Palafox, illustrated by Clarissa Kano

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Winston Churchill once described his depression as a big black dog that was his lifelong companion. Our poor kids also commonly suffer from any of a number of lifelong “companions,” one big one being obsessive compulsive disorder (OCD). Bigger than his big sensorimotor issues, speech dyspraxia, or medical issues, OCD is the number one challenge in Peter’s life. He describes it as “the terrorist,” the monster that “assails” his mind and behavior, that “vaccuums” his better thoughts and self. It is his “rate limiting step,” and has the greatest potential to limit his potential.

We have spent an enormous amount of energy working with Peter to help support him to get a leash on this problem. The results so far? See for yourself, and take a look at Peter’s essay below, in which he shares an inside look at how to battle the OCD monster. Though the battle is definitely a work in progress, it is his hope that in sharing his experience, he can share some practical and effective wisdom from his extraordinary team of consultants that will help other families in the same boat.

BATTLING THE OCD MONSTER

by Peter Tran

I was sitting in the car, grinning ear to ear after tons of work earning points by doing homework, exercising, and inhibiting my OCD. I finally earned the 50 points to go to Target!

​I absentmindedly started chewing on my pink goggles tapping toy strap. I guess it was a habit. You don’t think about what you are doing. The strap suddenly broke. I had chewed it clean through!

​By then we had arrived at Target. I felt overjoyed that we made it at last. I headed off to the stationery section for markers. The markers became excellent in my eyes because they were like a rainbow- red, orange, yellow, blue, purple, and green, long, good, smooth shapes, all neatly lined up in the box, full of possibilities. I could draw with them- imagine drawing Peter, good and successful. I could draw my favorite foods like meat, doughnuts, seaweed, and hotdogs, which make me happy. Mom doesn’t let me eat those often, so drawing them would be another way to enjoy them. I just drew myself eating a donut with rainbow sprinkles and a hotdog. I imagined it would taste heavenly, the hotdog hot and salty, and the donut soft and sweet. Drawing and imagining are great ways to enjoy something without doing it. Maybe I can do this with my compulsions.

​Anyway, I did get my box of markers. As I picked it off the shelf and held it in my hand, I felt very satisfied. Ahh! Just like scratching an itchy part. Unfortunately, my peaceful content did not last. I suddenly remembered I had ruined my pink goggles in the car. That made me feel like sharp, jagged red and orange lines!

​I pulled Mom up to the second floor. I knew just where the goggles were. I got a pink pair off the rack. I felt joyful that I could replace my treasure.

​But a nagging feeling lurked. Which prize would I buy? Fast disappearing was my victory. Instead I had a dilemma. What would I do? I wished I had not destroyed my goggles.

​At the check-out, I first put the goggles in the discard cart. The clerk checked me out. Unfortunately, I couldn’t move. How could I leave without the goggles? I needed those. I grabbed them back. The girl rang up a refund for the markers, and handed Mom the change. But then I couldn’t leave without the markers! Mom finally decided to buy both, and let me have one now, and earn the other. So she asked, “Which one do you want now, Peter?” I couldn’t decide. I grabbed the markers because they were my first love, and Mom whisked away the goggles in her purse.

​Unfortunately, all was not well. The markers didn’t fill my heart. I put some in my metal box where I keep my treasures and others in a plastic bag, but nothing felt right. Mom told me you cannot be satisfied with what can never satisfy. Truly, OCD can never be satisfied. It’s like a bottomless pit. Great was my disappointment. Instead of learning my lesson, my OCD found a new object. I ran around the house looking for the pink goggles. But Mom had hidden them well. They were not in her purse. I carried on for hours, insisting on going back to Target for another pair. But Mom said, “No, you must earn another 50 points.” I hounded her, but she held firm. Dad told her to take a break from me, so I lost her for the night, and with her, my best friend.

​I fussed all night, and continued badgering everyone the next day, but it didn’t help. What finally worked was writing this essay. I earned all my points, and got my pink goggles. Best of all, I got to be with Mom. And my OCD felt tamed. I didn’t feel as crazy.

​Unfortunately, that was just one battle. The “Target OCD” kept rearing its ugly head. I kept destroying goggles in less and less time, earned points frantically to go to Target to replace them, and then would start over again. Going to Target and buying goggles was not as satisfying as I hoped, and the satisfaction lasted for a shorter and shorter periods of time. By the time I was back in the car returning home, I was already asking for Target again. A friend of mine named Rosemary wrote a song for me to sing to talk back to my OCD:

“You’re a big fat liar, sowing doubt.

It matters not to me how loud you shout.

With Jesus in my heart I will not pout,

But chew you up and spit you out.

All you deserve is pure disdain.

All your tricks and ploys are plain.

God is my shepherd, He will reign,

His gifts to me won’t be in vain.”

I realized from my own hard experience that Rosemary’s song was true. OCD is a liar. The brain thinks it can feel good if you perform the compulsion like buying things at Target, but it doesn’t work.

​The sad thing is that reason is not enough to dispel OCD. I am still hounding my poor mother to go to Target. Despite knowing how meaningless it is to go to Target, despite loving my mother and knowing she is right, despite all the suffering OCD causes me and my family, I still am its captive.

I’m in chains, in mental agony.

Going round and round a merry-go-round

That revolves faster and faster.

I desperately want to get off.

My mind revolts against itself.

But all is a frantic gallop

To nowhere.

I can only pray for Jesus to cast out this demon.

I’m Not the Only One

​Tito Mukhopadhyay is another young man with autism and severe OCD. In the following passage (2008, pp. 186-7), Tito describes his experience of an obsession.

​”When I came to Hollywood, I got some new obsessions. One was riding a metro bus to a certain destination, and then returning by the metro underground train to the Hollywood Highland station From there, I would walk back home. It became my daily ritual.

​How strong was this obsession? I felt like I was inside a plastic box, suffocated all day long, until I could take those metro bus rides. I could not imagine myself not riding the metro bus and train, even for a day… What if (I) did not? I am sorry to say, that I would have a temper tantrum, which was beyond my control…

​My extreme obsession with train rides was beyond my reason and control, although I understood that I was being irrational about it. It is the same process that goes on in the mind of perhaps a chain-smoker, who, although he knows and understands completely well that he is not supposed to smoke, is still compelled to.”

​I like Tito’s analogies about his experience of OCD (pp.48-49):

“Those extreme obsessions happened like a sudden summer storm, with its rushing energy flowing within my body and mind. They happened with no definite direction and with a high and powerful intensity, ready to take control of my reason and behavior.

They paralyzed all my

Other thoughts,

So definite were they.

They had them absorbed.

They left havoc

Along their way,

They engulfed the nights,

And the stretch of days.

I heard banging of doors

From my own twisted hands,

Shadows screaming with worry,

Fear or confused triumph,

They powered me up

With a prolonged pain,

With no eyes to see,

No ears to listen.

They left me no mind

To think or realize,

They did their dance

Of some dreamless delight.”

​I think our experiences are very similar. I agree with his feeling that OCD vacuums the mind of reason and other thoughts. OCD often begins suddenly like a torrential rain, carrying the self away like a flood. It makes me feel affirmed to read about someone else experiencing the same terrorist assault. I am not lacking in character or effort. Severe OCD is a powerful enemy.

The Biologic Basis of OCD

​So what does research tell us about the physiological cause of OCD? OCD is caused by a brain glitch. The orbital frontal cortex senses danger, like an overwhelming need to dump a glass of water because otherwise it could spill. The signal goes to the anterior cingulate gyrus which connects to the limbic system, including the amygdala, which generates a huge sense of anxiety unless I dump the glass. Then the signal goes to the striatum, which is the place intention gets funneled into action pathways. The caudate nucleus is overactive in OCD and overwhelms the globus pallidus, which inhibits signals. The uninhibited signal travels on to the thalamus which is the relay center of the brain, and connects to the brain stem and spinal cord.

​Normally, the striatum ends the signal once the person realizes the glass is in a stable position (or the person realizes he already checked the door or turned off the stove). However, for a person with OCD, the striatum fails to inhibit the signal, and the thalamus restimulates the orbitofrontal cortex, and the circuit continues.

Intervention

​Neurons that fire together, wire together. So the more a person practices completing an OCD, the stronger the circuit gets, and the more he feels compelled to dump water, check the door, or perform whatever other compulsion the faulty circuit drives him to do.

​Therefore, the best nonpharmacologic treatment for OCD is to stop doing the compulsion. It is incredibly hard to do, but like everything the more the person practices, the easier it gets. So how does one practice disassociating the trigger from the compulsion?

​Let’s start with an illustration. Right now all I want to obsess over is going to Target. I want to replace my goggle strap. If you gave me a strap, I should be relieved, but I have a feeling that I would not be relieved. Therefore I believe I’m dealing with an OCD. So I’ll try to delay going to Target by writing this essay. The more I redirect my attention and energy into something productive, the better off I’ll be. I am building more mental control as I hope the intensity of the OCD subsides with each sentence.

​Right now, I’m starting to repeat “Target, Target.” Instead if I say “points,” I can shift my attention subtly from the obsession to doing something more productive, to earning points toward going to Target.

​This feels really hard. Every lower brain instinct is screaming to tell me I have to go to Target. The orbital frontal lobe sees no goggles or not the right goggles. The false thought is that getting the exactly perfect set of new goggles will quench a deep itch in my brain. My amygdala is firing fear and danger like mad. I must go to Target or be tormented with this feeling of craving or thirst or itch. On a scale of psychological stress between 1 and 5, 1 being calm ad neutral (no unsatisfied desire) and 5 being a frenzy to have the desired object of the OCD, I’m at a 4. (If I were at a 5, I would be hitting or scratching to get my way). So what do I do?

THE USUAL TREATMENT

​What is the standard treatment for OCD? In otherwise neurotypical people, the treatment is fairly orderly. Taking a bottom up point of view, the patient needs to sleep enough so he has enough energy to fight OCD. He needs to exercise enough to work out unproductive energy. The fundamentals must be dealt with or no success is sustainable. I find vigorous exercise like biking helps decrease my OCD the most. Keeping busy helps a lot too. OCD moves in unless something else occupies the mind. It might move in anyway but a blank mind is an invitation.

Cognitive Behavioral Therapy (CBT)

The first step identifying the problem. Some people can recognize they are getting upset when their hearts beat fast, they are breathing faster, or if they get getting clammy hands. I’ve never had much body awareness. I rely on my mom or aide to remind me of when I look upset. Then I try to see the reason. For example, yesterday, I frantically wanted to cut a rectangular piece out of my brother’s box of asthma medicines. It had a bright green stripe on it that I had to get a piece of. My mom stopped me, and asked, “Peter, is this a legitimate desire? Does it make any sense?” Only then did I realize I was facing an OCD.

​Then the patient learns coping skills to deal with the anxiety accompanying the obsession. Deep breathing, progressive muscle relaxation, and meditation often reduce anxiety. Once my OCD was really intense because we had just moved into a new house (stress may worsen OCD). Mom turned on my favorite rumba song. As we danced the rumba, my OCD anxiety melted considerably.

​Next the patient learns self-CBT, cognitive behavioral therapy. He learns to identify the false thought, and replaces it with a memory of real experience or truth. Then he thinks of alternative behaviors besides doing the obsession, maps out. The probable consequences, and chooses the best distraction. Over time the obsessive impulses diminish. Once I had an OCD about buying orange gift cards and cutting them up. I thought I had to do it or die. I realized the truth was that I was not in any real danger, and cutting up the gift card was wasteful, like cutting up money, so I changed my compulsion. Instead of cutting up the money part, I just cut up the tag. That took the fun out of it. Soon it stopped. That OCD went away.

Exposure Response Prevention

The best way to get rid of a more stubborn OCD is to take the offensive and do ERP, exposure response prevention. That is when you purposefully expose yourself to an OCD trigger, but don’t do the compulsion. Repeatedly do this with stronger and stronger exposures till you lose the desire to do the compulsion. Once I used this method on a compulsion to dump glasses of water. I sat in front of a glass of water for longer and longer periods of time inhibiting the desire to dump the water till I no longer had the habit. Repeated practice disassociating the trigger of the glass of water from the ritual of dumping it made that OCD so weak that I extinguished it.

​I used to clean off my utensil and plate between servings, although I knew I would eat more. I felt I had to do so because my food would look and taste better in a clean dish. Putting a new serving of food in a used dish would make the new food accidentally dirty, but I realize that the new food doesn’t get harmed. Also cleaning off my dish and utensils between servings had a downside. My napkin got soiled. So I made myself eat a new serving off of my old dishes over several meals. It took effort at first not to wipe my plate and utensils constantly, but got easier pretty fast. It only took me a few days to conquer that one.

​Neurotypical people use this ERP method systematically. They make a list of OCDs from easiest to hardest to resist. They do ERP for the weaker OCDs and work their way up the list, celebrating each victory as their inhibition grows stronger and the OCD grip on their life grows weaker. Once they are done with the list, they remain vigilant for new OCDs, squashing them as soon as they pop up while they are still weak.

STEPPED UP TECHNIQUES FOR HARDER CASES

​Uneasy Truce

In people with autism you might not be able to extinguish OCD. For me, OCD feels like a direction my brain falls into naturally. So if I extinguish one OCD, another rises to take its place. If I tried to extinguish every compulsion I think my brain would keep looking for something to obsess about. So I divide my obsessions into “good” ones and “bad” ones. “Good” obsessions are ones I can use as “sled dogs,” meaning still live productively with. I explain more about that later. “Bad” obsessions are destructive and harmful. I live with my “good” OCDs and work on eliminating or at least decreasing the “bad” ones. The situation is like the good and bad bacteria in the gut. Good bacteria crowd out the bad. But it’s an uneasy truce. The “good” obsessions can transform into “bad” obsessions, like my increasing need to go to Target to replace goggles I would chew up. So I have to be vigilant. If an obsession turns “bad” or out of control, I can’t use it anymore to keep my brain from engaging in a worse one.

Taming the Tiger

If an obsession gets more intrusive, I need to fight it harder. Once I was sitting in speech therapy, when suddenly I had a sudden compulsion to grab a green pen I saw in Miss Shohig’s pen can. There was no reason or thought behind it. I just felt I had to have that pen. I imagined taking the pen apart. I had been into disassembling pens lately. Mom wouldn’t let me have the pen, and Miss Shohig put the whole can in another classroom. I tried to resist the compulsion and turned my attention to answering her speech questions. While my upper brain answered questions, my lower brain tormented me by insisting I get a green pen. Finally, I stood up abruptly and made a run for it. My mom ran after me. I saw a row of closed doors. Which one had she hidden the pens behind? I flung open a door and peered inside. The teacher looked up, startled. Mom closed the door and held me tight. She got me to the car. Miss. Shohig hid the can of pens for a number of sessions. My mom’s and Miss Shohig’s determination did extinguish that OCD. Now i can go to speech without craving a pen. The lower brain can be taught, but it may require force, liked Mom physically preventing me from my seeking the pens.

Using Creativity

Sometimes you can try to get ahead of a runaway OCD. One day, Mom and I were sitting at the cafe at the exit of the Huntington Library. I earnestly wanted to work on my obsessive goggle tapping. It was keeping me from sleeping. So we tried some ERP. Mom put my goggles on the table. I set the timer for 5 minutes. The goal was to see if I could not tap for 5 minutes. To handle the anxiety, I turned to writing poetry.

“Closing Time at the Huntington Library”

I hear the soft splash of a fountain.

I hear the quiet murmur of voices,

broken by a harmonious chorus of “oh’s!”

as the baby next table over

had a mishap.

North I see the soft warm lights of the gift shop

shining through the glass walls.

They feel welcoming and comforting.

To the South I see a fountain,

like a big bowl with water flowing over its lip.

I see a soft golden haze behind hoary green gray desert leaves,

fading in a line to the horizon.

To the West is a brilliant blaze of setting sun.

I turn my face toward the East

and head home.

I felt much better. I realized I could survive without tapping incessantly. I was able to sleep better and kept my goggles out of sight in a drawer. I hear ERP usually doesn’t work that fast. It usually takes many sessions of exposure without getting to do the compulsion.

​Instead of extinction of all OCD’s, instead of a cure, my goal is to develop more self control, meaning inhibition and attention-shifting. So short of extinguishing OCD’s, one can shorten the duration of engaging in the rituals. Delay doing the ritual. Engage the upper brain to creatively change up the ritual. At times I’ve used my creativity to avoid bad behavior that an OCD was making me do.

​One time I had a crazy compulsion to cut up bright colored paperback book covers. That included an orange music book of Raffi songs and my mother’s medical review books, each of which had a bright red stripe.

I want you, orange book,

of the bright, glossy, orange look.

The smiling man, Raffi’s the name,

music man, of children’s fame.

Oh orange book

of the glossy look,

how I long to cut up your pages

Snip, snip, rip your cover fair,

more fun to cut than juicy hair.

If I could put my hands on thee,

my compulsion would so satisfied be.

Oh orange book,

Oh orange book,

How I long to cut up your pages.

A juicy slice my fingers feel,

curling strips like an orange peel.

A crisp sound cuts nicely through the air,

as my scissors make a sharp, straight tear.

Oh orange book

of the glossy look

how I long to cut through your pages.

But at the end of my rampage,

Alas! delight is just a phase.

A ruined book, disfigured and sad

reveals the mind gone partly mad.

And so poor book, rather than such a story,

I’ll leave you to your pristine glory.

I’ll turn my mind to poetry and math,

eat my dinner, and take a bath.

Putting Away Visual Triggers and Compartmentalization

The poem shifted my attention for one night, but alas! my OCDs do not fade readily. I kept going after the books. Mom hid those books away, but I found others. The obsession came to a head right before Christmas. Mom and my brothers finally had to pack up all the books on Christmas Eve when I was asleep. Mom left one shelf of books she was going to throw away anyway, and told me to just cut up those books. That compartmentalization really helped me. I see good books she neglected to pack away sometimes, but I go for the ones in the discard shelf instead. Takes some effort to walk away from the good books, but it’s manageable.

Sled Dog Instead of Wild Dog

The strategy I use the most is delay. When my OCD acts like a wild dog and makes me talk about going to Target again, I figure that at least I can use its crazy motivational power to get something productive done. So I turn the compulsion into a reward. Mom tells me I can go to Target if I earn points. I might earn a point for each lap I swim or sentence I write or edit. That way I not only leash but harness the energy of the OCD, turning the wild dog into a sled dog.

Right now I am writing to earn 150 points to buy a new set of goggles. I did a terrible thing. I love to tap on swim goggles. Swim goggles have just the right amount of bounce in them, and they don’t make too much noise. I had chewed through the strap of my own goggles. I remembered Mom had a pair in her swim bag, so I stole them. Poor Mom. She really missed those goggles, as she had taken good care of them for years. When I stole them, my OCD told me they would satisfy the craving in my mind for goggles. But instead, OCD made me chew up the straps (on my Mom’s) till they disintegrated in just two days. So now both Mom and I have nothing. My craving is as intense and painful as ever. I am in no better shape than I was two days ago. Actually, I’m in worse shape because I have lost Mom’s trust as I stole from her bag, and we are both goggle-less.

​Yet though I know the OCD is a big, fat liar and causes suffering and destruction, I still feel compelled to go to Target and buy another pair of goggles. In other words, I feel compelled to repeat the same behavior. Buy goggles, destroy goggles. The only pleasure in the cycle is to bite into those straps. But do I even get pleasure out of that? Not really, I just feel driven. I’m not free to enjoy anything, just a miserable slave. I think I know exactly how a drug addict feels. He would lie, steal, and harm those he loves to do something that doesn’t even give much pleasure anymore, something he hates to do. OCD has no logic, reason, or mercy.

​Once I replaced my Target obsession with a true thought like, “I don’t really need to go to Target. I lived happily for most of my life, going to Target only infrequently. Going to Target only makes me happy very briefly anyway.” Then I brainstormed alternative solutions and mapped the probable consequences. I could decide to get Mom to take me to Target. I might buy another pair of goggles. But then I would be feeding an ugly OCD that gives me no joy anyway. By experience I know this. Alternatively, I could go to Rite-Aide and buy markers. Purple, brown, orange, yellow, I could enjoy the colors. I could walk to Rite-Aide which would burn off some calories. doing something different would stretch my OCD and not reinforce my monstrous Target OCD. I chose the better solution that time. I chose to go to walk to Rite-Aide to buy markers.

​I felt good about that decision. But what about this time? I really do need a pair of goggles to tap, and have lost my other pairs. I’m only a few points away from earning another trip to Target. Yet I know that going to Target completes a bad circuit and reinforces it. Maybe I can stretch myself, but not too much. Once I go to Target and buy the goggles, I will set myself a target date of making the goggles last at least two weeks before I let myself go to Target again.

I did actually make it for 10 days without destroying my goggle straps . That was a big improvement for me because at my peak of OCD intensity, I was destroying new straps before the day was done. I think the knowledge that I wasn’t going to Target for 14 days helped my lower brain to rein in. I had four more days to wait, but did survive.

 

Unfortunately, when I did make it to Target, I blew it. I bought a pair of goggles but destroyed them kind of immediately. I didn’t get much pleasure out of it either. At first I felt discouraged with my failure. Then I realized I can learn from my mistakes. I realized I need to set a firm limit on this Target OCD. I made it for ten days without destroying my goggles before. Next time I earn goggles, I will tell my lower brain that I can’t go to Target again for ten days at least.

Keys to Success

I realize OCD has a positive side. The Frostig Center published a study on kids with learning disabilities. The kids who grew up to be most successful had six characteristics. First, they had good self-awareness. In battling OCD, the first step is to realize you are having an OCD, and need to resist giving in. Second, successful kids knew how to set goals. You get lots of practice thinking up different things to do instead of the crazy compulsion. That’s setting a goal. Whenever I turn my “mad dog” OCD into a “sled dog” reward, I’m also setting a goal. Third, you have to be proactive and actually do what you planned to delay, change up, or not do a compulsion; proactivity is another characteristic.

Fourth, successful kids had good skills coping with emotions. When fighting OCD, you get plenty of practice with deep breathing and talking to yourself. Fifth, successful kids had perseverance. All those repetitive thoughts give lots of opportunity to become persevering fighting them. Finally successful kids were good at creating and using support networks. I could never survive OCD without teamwork. My mom and tutor, Belinda, help me all the time. It’s love that makes it possible to fight OCD. It’s hard enough to fight it with loving support; without it, the constant struggle would be impossible to keep up.

 

So despite the pain and suffering it causes, I guess OCD can actually be a training ground for success.

 

I thought you had no purpose,

I thought you were my bane,

But without you Target OCD,

What motivation would I rein?

 

Instead of being Wild Dog,

I made you, Sled Dog, run.

By earning points for sentences,

My essay now is done.

 

References

 

Mukhopadhyay, Tito. (2008) “How Can I Talk If my Lips Don’t Move?” New York: Arcade Pub.

Raskind, M.H., Goldberg, R.J., and Higgins, E.L. (November 2003) ‘Predictors of Successful Individuals with Learning Disabilities, A Qualitative Analysis of a Twenty Year 501

Longitudinal Study, ‘Learning Disabilities Research and Practice,’ Vol. 18, Issue 4, 11/03, pp. 222-236

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dong-combat-your-monsters.jpg

 

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Hard getting out of the car.

My feet felt reluctant as

I dragged myself into the gardens.

My mind was full of start and stops,

jerky, telling me I had to

jot down endless words.

Mom said, “Come on! Ten steps

and I’ll help you spell the next one.”

I knew she was trying to help me move,

but my feet kept stopping.

I had to keep jotting.

Then she challenged me,

“If we get to the top of the hill,

we can sit down!”

Off she went, striding ahead,

I got going… I had a goal…

Felt good to move those legs,

breathe in the soft late afternoon air,

golden, then rosy, then gray.

The obsessions lifted

as my feet picked up.

The canopy above was dark and green.

The forest dampened the noise

in my spirit.

We made it to the top.

I sat by a fountain, tinkling water,

white foam decorating the edges.

Mom turned on music,

“Fields of Gold.”

I got up to dance.

“Slow, quick, quick,”

the rhythm of the dance

phased in and out.

It carried me out of my OCD

like a gentle wave.

The late afternoon turned to twilight,

and darkness was descending fast.

We hurried down into the darkening forest.

As we exited the gate,

something seized me.

“Target,” I had to

“Walk to

Target.”

Mom sat me down on the curb.

We googled the distance.

Ten miles, 3 hours, 8 minutes.

To earn points for a trip to the store,

I did grammar,

sentence after sentence of

pronouns, past participles, and commas.

Night descended.

Too dark to see.

“Let’s go home to earn some more points, Peter,” said Mom.

So I got into the car.

We drove home to a tasty dinner.

Another day

dodging

OCD.

by Peter Tran

What’s it like to live with OCD? Yesterday Peter wrote this reflection at the end of the day. It describes the stuttering of the stop-go switch in the basal ganglia as he tried to walk into Descanso Gardens. Then Peter tried to cope with a set of words  obsessively echoing in his mind by writing them down. We finally got him going up the hill at a good clip by using his desire to sit down at a favorite spot, and broke his bondage for a brief moment with the natural beauty and peace of the gardens and with ballroom dancing at the top of the hill (music from my iphone).  Sadly, the relentless OCD assailed him again at the exit with a crazed obsession to walk all the way to Target. As Peter would not enter the car, we tried earning access points by doing grammar practice sentences, as an attempt to reengage the frontal lobes. It did work, along with natural hunger and the dark of night, to see the reason in getting into the car to return home.

OCD is not something we can conquer, but we try to get around it by “living” in the space between obsessions. Not an easy dance.

Please pray for us, and for all families living this struggle.

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It was another one of those difficult mornings. Took me over an hour to wake up Peter and get him out of bed. He spent a long time in the bathroom, and when I went to check on him, I caught him unrolling large amounts of toilet paper again. As I rushed forward to stop him, he threw it all down the toilet and flushed it (one of his compulsions). The only thing he ate of his breakfast was plain bread, leaving his nutritious egg, fruit, and peanut butter behind. I was the last of the family to dash into the family car as I had to brush stains off his laundry before they settled in.

So I felt frustrated, as I waited for him to get himself out of the car. The rest of the boys leaped over the seat to get out of car, as they couldn’t get past Peter. Once he managed to get himself out of the car, he walked slowly toward the church, dragging on my arm. The other boys ran ahead to meet up with us later. Then Peter suddenly froze, getting stuck in the middle of the driveway. Fortunately, we were so late by then that there were no cars coming. I tugged and towed him safely to the sidewalk. “Well, Peter,” I said, trying to count my blessings, “it was good that you finally thought of setting the timer to get out of the bathroom. And you did get out when it went off!” Peter brightened a little, and tried to pick up his feet a bit faster.

Oops! Once we were seated in the pews, I noticed Peter tapping the pair of pink swim goggles that he loves to carry around and fidget with. His therapy team had agreed we should all work on having him leave them in the car when going out in public, to put some limits on the compulsion. I opened my purse to remind him to drop them in, and took out a laminated keyboard card for him to hold instead. Peter looked distressed, but dropped in the goggles.

The second reading at Mass was from 1 Thessalonians 3:12. “Brothers and sisters: May the Lord make you increase and abound in love for one another and for all, just as we have for you, so as to strengthen your hearts, to be blameless in holiness before our God and Father at the coming of our Lord Jesus with all his holy ones. Amen.”

The verse convicted me. I prayed silently, “Lord, please give me the love and grace I lack which my son so desperately needs.”

Just then, Peter urgently grabbed my arm. “Pink goggles, please!” he pleaded.

Providentially the grace dropped into my heart in the nick of time. “Yes, dear. You did such a nice job asking me politely instead of grabbing. You may have them till the homily (sermon) is over. Then let’s try to put them back in the purse so you’ll have another something to offer up for Jesus.”

Peter’s eyes lit up at the affirmation. He happily tapped away on his goggles during the long homily, and peacefully dropped them back in my purse during Communion.

The homily was about how both the Old Testament and gospel readings were about the end-times, and the tribulation to occur before the Second Coming. The priest asked us to contemplate why the Church would use these readings at the first Sunday of Advent, when we start looking forward to the birth of Christ at Christmas. The trials of the tribulation may trigger fear and dread in us, but if we can only trust God and remain faithful throughout them, God promises a crown of life and new kingdom on earth as it is in heaven. Advent celebrates the first coming of our Lord as a gentle child and our Savior. In the Second Coming He will return in power and glory as Righteous Judge. But in both, we look forward to his coming with joy and hope, as the gospel says, “… stand erect and raise your heads because your redemption is at hand.” (Luke 21:28)

Also in both, the theme is death and rebirth; in the “First Coming,” it is the theme of Jesus’ story, for the Second, it is our story. The priest made the point that in His first coming, Jesus showed us how to live to prepare for the second. Jesus accepted the will of the Father and died on the Cross, then rose to eternal life. We imitate him with every small death we suffer, from all the sorrows, injustices, contradictions, and sufferings that inevitably come into our lives. Like Jesus, if we accept bear our Crosses with love and faith, trusting in God’s great love for us and obeying His commandment to love and forgive in turn no matter how difficult our circumstances, they will become instruments of our sanctification, as we grow in character to be more like our Lord, more fit for the Kingdom of Heaven, as in the same process we work to bring God’s kingdom on earth. Thereby in imitating the death of Christ, we too discover new life.

When I was younger, I used to rebel at the idea of a loving God willing the terrible suffering we see happening to people around the world. I have since come to realize that though I may never and probably will never understand the mystery of evil, I know by experience that Jesus is my loving Savior who leads me through the darkness, and that the Holy Spirit He sends is real. Peter battles his autism every day, including severe OCD, anxiety, inertia, and impulsivity. We get through it by constant prayer for God’s help, offering up our struggles, and each time, the Holy Spirit has sent that burst of inspiration and grace that has gotten us through, albeit sometimes just barely.

So I thanked God for the grace He gave me at Mass, to be able to give Peter the encouragement he needed to keep trying. Reminding him of his successes with the timer and in asking for instead of grabbing the goggles were little acts of love, but sufficed to get us out of two bad situations. Imagine variations of this scene repeated over and over hundreds and thousands of times, and you have a pretty good idea of how Peter and I get through life with autism. We live by faith, we live by prayer. These are essential to our survival. But this is how Peter has managed, sometimes barely, to live a life above and beyond his disabilities. It is through faith that Peter can write his Thanksgiving poem (see previous post) from the sincerity of his heart.

But it isn’t easy. At times the relentless assaults of OCD, anxiety, and inertia feel overwhelming. You get exhausted. The joy of the Cross is sometimes the only thing you and your child may have to fall back on.

The other day, Peter was exhausted from battling one OCD after the next. He had been cutting up the covers of my medical journals. Right after we finished talking about how that was a destructive thing to do, and how he might come to me for help next time he felt that compulsion, I found his little brother’s newly purchased book cover cut up into pieces. “What happened?” I asked Peter.

“I’m no sissy. I rebel,” he typed. ” I feel tired of resisting my lower brain. why should I always have to fight? I feel hemmed in.” He went on to explain how he decided he was like Elsa in “Frozen” and had decided to “let it go.” He told me that Elsa spent all her energy repressing her true nature, and finally felt better after letting it loose. But when I asked him what Elsa’s true nature really was, he admitted she was kind and gentle, and that he wanted to be that way too. I asked him what finally helped Elsa live out her true nature and learn to control and transform her destructive powers, and he said, “Love and learning not to be afraid of herself.” So true, I thought, but not quite as easily done as portrayed by Disney.

Love does transform bad into good, but it doesn’t happen in an easy, sudden, painless way, like in the Disney version. Jesus showed us the way, and it’s the Way of the Cross. How do we get through speech therapy without grabbing the green pens Peter is obsessed with? How do we walk past a bottle of soda that Peter longs to pour down the sink as part of his dumping compulsion? How do we get up out of the chair to start gymnastics when the body feels completely stuck? How do we make it through passing period at school or through a crowded shopping mall when the senses feel so flooded that one arm is over his eyes, and the other is gripping my shoulders for dear life? We pray and offer it up. Each time Peter offers up the terrible anxiety of delaying a compulsion or the massive effort required to get his body to move and do what he needs to do, he dies another small death. But this is how he improves. This is how he has built up the self control needed to live a functional and productive life, integrated in the community. This is how he has built the perseverance and courage that mark his character. How he has built his reliance and faith in God. The Way of the Cross has truly given him life, and whatever freedom he has from the slavery of his terrible disabilities.

So we thank Jesus for his sacrifice. Without His tremendous example of loving self-sacrifice and trusting obedience to the Father, His eternal spring of grace, and empowering invitation to offer up our sacrifices in union with His on the Cross, where would we be? The Way of the Cross has been Peter’s strategy on the battlefield, the grace of the Lord his armor. And where would I be? I certainly would not have it in me to be his armor bearer and adviser. Where would I get the creative ideas to inspire him, to encourage when feeling discouraged, or be gracious when tired? Self pity is my default. It has been my great privilege to witness the power of the Holy Spirit instead. Thank God for our Lord who searches for us, lifts us out of the crevices and chasms we fall into, and carries us lovingly upon His strong shoulders.

So each morning upon awakening, Peter and I think of all the people we know who need our prayers, and offer up the struggles we are likely to encounter for them, and for “all the intentions of Thy Sacred Heart, in union with the celebration of Holy Mass throughout the world” (words from the Morning Offering). “May we too learn to turn all circumstances and events of our lives into occasions of loving you, and serving the Church, Roman Pontiff, and all souls with joy and simplicity, lighting up the pathways of this earth with faith and love” (words from a prayer card to the saints). These prayers have given meaning to our suffering, and hope and purpose to our lives.

And joy. Because as members of the body of Christ, He invites us to unite our sufferings with His upon the Cross for the good of souls.[1] What’s more, we know that faith, trust, and love for Jesus despite adversity more profoundly comforts Him on the Cross than anything we could offer in the midst of our blessings. As Peter said, at the end of our conversation about Frozen, “I am absolutely certain that I want to be like the loving Jesus… thanks for reminding me, Mom.”

Maranatha! Come Lord Jesus, as we enter this season of Advent with joyful hope and glad faith.

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[1] 1 Peter 2:15, Romans 12:1, Col 1:24

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Dealing with mental illness is not for sissies.

So many of our poor kids have OCD. What a horrible brain glitch! Repetitive thoughts (the obsessions) and actions (the compulsions) that go round and round, and erupt into violence at times when you as a parent have to block a dysfunctional compulsion.

Peter’s OCD cycles up and down. Right now we are in a fierce upswing in the frequency , intensity, and sheer variety of compulsions. As soon as we tackle one and face it down, another pops into its place. As Peter puts it, “They are popping up like daisies!” But ferocious daisies.

Meds can take the edge off, at least temporarily. But meds frequently aren’t enough. Peter and I put on our armor of psychological tools to do battle with OCD daily. The following example from this morning illustrates the major ones we use, CBT (cognitive behavioral therapy), shifting attention, and delay.

No sooner had I walked into Peter’s room than OCD greeted me at the door.

“Good morning, Peter,” I said cheerfully.

Peter’s eyes flew open. He sat up in bed and grabbed my wrist, drawing me in close as I sat by the side of his bed.

“Pink goggles,” he said, eyes wide and staring into my face.

I sighed. For weeks off and on, Peter had been holding on to an old pair of pink swim goggles that he would tap incessantly. I had relocated them earlier in the bathroom as an incentive to get him out of bed and into the bathroom. “Wow. Looks like you really want those goggles. You seem really anxious to have them right away. Now think about it, Peter. Is it reasonable to feel so driven about a pair of goggles, or is this an OCD?”

“OCD,” said Peter, still gripping my wrist.

“Well, if it’s OCD, let’s not just give in to it. The OCD is saying you have to have those goggles right now or die. But you know you’ve lived many years just fine without holding onto them every moment. So how about teaching your OCD a lesson? I put your pink goggles in the bathroom. You can either turn OCD into a reward to help you get out of bed and into the bathroom where they’re waiting for you, or try to ride the wave till it diminishes. Hey, I wanted to talk to you about that great show we saw this weekend in Vegas with Cirque du Soleil and all the divers.”

“Pink goggles,” said Peter. I could feel the heat on his emotional thermometer rise.

“Come on, you can do this. Shift your attention and type with me. Remember, you have access to those goggles any time you want. They are a short walk over to the bathroom, and you can go get them any time, no problem.” As I reassured him about access, Peter’s face and grip relaxed. He sank back into his pillow. The rest of the conversation went as follows:

Mom: So did you like the clowns at “O” (the name of the Cirque du Soleil show)?
Peter: Yes. The little one was cute. I liked his sounds. His body movements were ingenious.
Mom: I agree. I especially liked their first act on the sunken houseboat. What was the storyline?
Peter: The little clown used a big hammer to (knock himself out to) fall asleep. The  big clown lost control (of the hammer) and made  a hole in the boat (which spouted a fountain of water gushing up into the air).Then they sat in the undersized bed together and shared the umbrella with holes.
Mom: Did you get the joke about the grandfather clock?
Peter: Yes, it was a bathroom.
Mom: Peter, you are good at reading body language. Isn’t it amazing how without any words used, the clowns communicated an entire story so well?
Peter: Yes.
Mom: I thought the ending was bittersweet.
Peter: The clowns showed that we go through life solving problems in silly ways that cause more harm than good, but at least we can love each other.
Mom: Beautifully put, my dear. Very true, actually. Peter, did you notice, how the OCD wave passed you by as you redirected your attention?
Peter: You are right! I guess you  appraised the situation well. I feel strong, not a slave to the OCD.

So what were we doing? The overall strategy was CBT, or cognitive behavioral therapy. The basic steps of CBT are to identify or label what’s going on, then identify the false thought, replace it with more realistic thinking, and problem solve how to proceed. So we identified the request for pink goggles as an OCD. We replaced the false thought of “goggles now or die” with a reminder of his own experience of having survived successfully without them for most of his life. Then I offered him a choice of alternative ways to deal with the OCD rather than giving in to it. Peter seemed very agitated about any thought of not getting the goggles, so I reminded him that access was possible and in his control at any time if he just made the effort to get out of bed.

That reassurance was enough to dampen the fire of the OCD drive enough to allow his upper brain to engage with me. Indeed, that is why delay is the number one most useful tactic in dealing with OCD; if there’s an end in sight to the misery of not getting to do the compulsion, the amygdala seems to immediately cool down a notch.

Then we embarked on engaging that wonderful frontal lobe, master of illusion and distraction. I chose a subject that was fun and interesting, a circus act we had recently watched. You want to ask questions that engage the mind, but are not too hard, especially at first when the child already has his “affective filters” up (meaning already upset, and therefore not thinking at his best). So I asked Peter for a summary of the action, which for him, is a pretty easy question. Once we got into the conversation, I made a more challenging comment (“the ending was bittersweet”) to really fully engage the frontal lobe and give him something more provocative to get into. Peter’s answer was indeed beautiful, not only because of his insight, but because delving deep into his thoughts and feelings reconnected his upper and lower brain, and freed him from the grip of the OCD.

We were lucky. This time the obsessional wave actually passed him by and completely left him for a time. It’s not always so neat. Many a time the OCD is too big, circumstances are such that I cannot grant even partial access, and a meltdown ensues. However, my point is that if you just keep working on your tools of CBT, attention shifting, and delay, you will have successes like this. Starting with the smaller OCD’s. As the frontal lobe connections get stronger and the OCD circuits get more and more starved of practice, the hope is of building a stronger fighter and weaker OCD monster. Time and practice will tell.

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“No! No!” With a mad gleam in his eye, Thomas dashed forward for the glass. He snatched it out of his mother’s hand, and made it to the sink in three mighty strides, dumping the contents with a look of relief and triumph on his face. Then he quickly refilled the glass with juice and exactly five ice cubes.

 

Harry wailed as he screamed at the top of his lungs, “You just want to give me more work! This is using up my free time!” as Mom corrected his math homework.

 

Do you sometimes feel like you live in a nuthouse? That as soon as your child with autism and OCD (defined below under footnote [1]) gets over one compulsion, a new one (or two or three) springs up to take its place? That the “neurotypical” younger sibling with the low frustration threshhold explodes whenever you do homework together?

 

I put these cases together because they actually occurred in tandem one afternoon to a family I work closely with. It was a mess of a day, struggling with these disparate situations involving children having completely individual profiles and challenges, but afterwards upon reflection, Mom realized that she had used the same method called CBT, cognitive behavioral therapy, on both.

 

So what is CBT (see definition below under footnote [2] )? Is it something parents have to spend a lot of money to get from mental health professionals for their crazed children? Or can you try it yourself right at home in the trenches? The answer is definitely yes for latter, and possibly yes for the former. Parents can definitely learn to use CBT effectively on their own in the home. Professionals can add critical support in tougher cases, but the more a parent practices CBT on their own, the fewer consultations will be required, and the more fruitful those sessions will be.

 

The following steps were adapted from Dr. Anne Marie Albano’s excellent book, “You and Your Anxious Child,” (2013), Penguin Books. She’s the director of the Columbia University Clinic for Anxiety and Related Disorders.

 

Step One: Help your child learn the identify the negative feeling while it’s happening, with the goal of doing so early, before the emotion grows too intense to cope with.

 

Thomas’s case: Too late! Thomas went from 0 to 60 in seconds without warning- ice cubes triggered the OCD, and he was unbearably anxious immediately, acting on it (dumping the ice cubes) before there was any chance to engage those frontal lobes. But that’s ok. Mom was quite sure there would be a next time. So she talked about how wow! he must have felt pretty anxious when he saw there were too many ice cubes. She drew an emotional thermometer scaled 0 to 5, and he pointed to the 4.

Harry’s case: Also too late! At first Mom was puzzled- Harry got upset so suddenly, without warning, and in her opinion without any provocation- by fourth grade, surely he should expect having to correct his homework. But upon reflection, she realized that it was not her demeanor nor demand that had anything to do with the problem, but the situation combined with Harry’s temperament. He was proud of having done his homework on his own, and was looking forward to relaxing. He has a low frustration threshhold, so the thought of possibly having to start all over again when he was already tired was too much. Mom realized the importance of the two of them having a discussion about expectations (expecting his homework to be corrected), setting aside time for it, and limiting extracurriculars so that enough homework time could be set aside and scheduled early enough before he tired out. Especially for our kids with short fuses (so no warning time), setting up for success is critical. This kind of forethought and preparation may not only be your best but only option to avoid an explosion.

 

However in general, for the next time, how does one teach a child to recognize a negative emotion early, before it grows to overwhelming proportions? According to the book, during a calm time, you’re supposed to take the time to teach your child how to identify the physical feelings of anxiety, so he’ll be able to spot it in himself early. For example, you can draw a body map of your child on a big piece of butcher paper, and draw arrows to the chest labeling a tight, explosive feeling or racing heart, lungs for rapid breathing, wrist for rapid pulse, forehead for perspiration, hands for cold and clammy, abdomen for gurgling or tummy ache, etc.

 

For Harry, Mom also wrote on the pink side of an index card: “Homework Explosion Signs! Turning away. Raised voice volume and pitch. Fidgeting and throwing erasers. Blaming. Changing the subject.” Although I wouldn’t try this with every kid as it might make him madder, she also videotaped :Harry once during an explosion, so he could see what it looked like. Both of those “self-awareness” measures have reduced the explosions, even though Harry has never once viewed the videoclip, and Mom usually has only to mention and not even pull out the card.

 

Step Two: Address the Emotion

In a way, it was easier to address Thomas’s emotion because his anxiety resolved immediately upon performing his compulsion (easy only in the short run, BAD in the long run because the more times he performs a compulsion and feels relief, the stronger that connection between the compulsion=relief becomes in his mind, and the stronger the compulsion becomes).

 

But for Harry, dealing with the emotion was the hard part. All Mom could do is be silent and present until he stopped screaming and yelling, since he couldn’t hear her anyway even if she tried to talk. After a period of ranting about the “extra work,” he started ranting about why Mom was just sitting there instead of moving forward, “wasting more time.” Sigh! When she tried to quietly tell him he needed to calm down so he could hear her, and then she’d talk, he just yelled louder. When she suggested deep breaths and tried to demonstrate them, he just got madder. So finally she decided “being present” was actually providing an audience that wasn’t helping. Mom told Harry he could come get her when he was ready to work, and left. Lucky for her, Harry really did want to finish his homework, and did eventually calm down (barely) enough to finish going over the corrections. That was an accomplishment. In earlier days, she had had to send him to his room with a timer to make sure he didn’t just go and play and get out of his work. Several such time-outs were necessary for him to get the point that cooperation (fixing his homework mistakes) was required and inevitable.

 

If it were possible to catch these emotional “dysregulations” at an earlier, more manageable stage, perhaps they could have done deep breathing or PMR (progressive muscle relaxation) to put a halt to the growing anxiety. Deep breathing is “balloon breaths” where the child puts his hands on his abdomen and feels his fingers expand out (“blow up the balloon”) as he takes a deep breath on the count of 5, and slowly exhales (“blow out the birthday candles”) on a count of 5. You’re supposed to teach deep breathing exercises and “progressive muscle relaxation” (in which you teach your child to sequentially contract/tense up the various muscles groups and then relax them from head to toe) as exercises a couple times a day, as a fun family routine activity, so they’re automatic when you need to use them to cope with anxiety.

 

Often humor works the best. For Harry, if Mom thinks some homework item is going to be hard, she’ll say, “Now don’t panic, Harry, this’ll be okay!” before tackling the problem, and get a smile out of him. She used to say, “Oh dear- here comes the lion! I think he’s ready to roar!” when he was younger, and the imagery was fun and helpful. “I think I’ve got an angry cat!” still works to clear the air sometimes.

 

Step Three: Help the child identify the untrue, negative thought, in other words, the distorted thinking that does not match up with reality. Then come up with the true, positive replacement thought together. It is NOT advisable to try this until the child has calmed down!

In fact, usually this step can’t even happen at the first incident. You usually get through the incident as best you can- for example, Thomas had already performed his compulsion. Harry and I had already gone over his homework corrections. Once the child is relieved from the stress/demand, and has thoroughly calmed down, you can sit down and go over this step for the next time.

 

Thomas’s case:

Mom drew a sad face (actually two eyes with upgoing eyebrows and a horizontal zigzag for the mouth) with a blank balloon thought bubble that they filled in with Thomas’s answer.

Mom: “So Thomas, what were you thinking when you saw the ice cubes before you dumped them?” Thomas: “I need five ice cubes or I won’t be okay.”

Then she drew a happy face with a blank balloon speech bubble that they filled in with Thomas’s next answer.

Mom: “So what’s the actual truth? What can you tell yourself and say back to the OCD?”

Thomas: “I’ll be okay with any number of ice cubes.”

 

Harry’s case:

Mom: (First we worked on getting down the negative thought on the pink side of an index card.) “So Harry, is this what you were thinking?”→Then they worked together on the true, positive thought which they wrote down on the back (white) side of each card.

1) “Mom is making more work for me.”→

“She is checking my understanding or giving me more needed practice.”

2) “This is too difficult and takes way too long. I’ll lose all my free time.”→

“Breaking it down like this will help me get it faster and save time in the long run.

Mom will set the timer and make sure we only work this long, so I’ll have plenty of free time.”

 

(Here are some other common ones, but I wouldn’t recommend presenting them all at once:)

3) “Making mistakes means I’m bad or stupid.”→

“Making mistakes is a normal part of learning. The faster I recognize a mistake and learn how to fix it, the faster I’ll learn.”

4) “Mom is correcting me because she thinks I’m stupid or don’t get it.”→

“Mom is correcting me because she knows I can understand and do this even better.”

5) “Mom is trying to punish or delay me by giving me a time out.”→

“I can’t learn when I’m too upset. I’ll learn better and faster if I give myself a little time to calm down.”

 

Step Four: Brainstorm management (“dealing with it”) strategies.

Thomas’s case:

Mom: “So Thomas, next time you see a glass with something other than five ice cubes in it, how are you going to deal with the OCD?”

Thomas: “I can squish it by delaying it.”

Mom: “Great idea! Shall we set the timer for 5 minutes or 10 minutes?”

Thomas: “Five minutes.”

Mom: “While the timer is going, what can we do to help you with the anxiety? Balloon breaths?”

Thomas: :”Squeezes.” (He likes hand squeezes.)

Mom: “And what do you tell yourself?”

Thomas: “Any number of ice cubes is okay.”

Mom: “And remember the doctor told us we should also plan a way to get busy while the timer’s going. Should we do math facts? Lunch?”

Thomas: “Lunch.”

 

Harry’s case:

Mom: “So Harry, next time you start panicking about homework, how can I help you?”

Harry: “I don’t know.”

Mom: “Do you feel it coming on or do you just suddenly explode?”

Harry: “What do you mean, ‘explode’?”

Mom: (Starting to show him the pink side of the card from step one) “You know, the homework explosion.”

Harry: (laughing) “Oh. I don’t know. I just get mad.”

Mom: “Maybe it just broadsides you. How about if I see signs of it coming (you know, the clenched fists and high voice), we try the deep breaths?”

Harry: “No! I don’t like doing those!”

Mom: “How about push-ups or jumping jacks?”

Harry: “No! I won’t do them!”

Mom: “Well, ok, but if I hear you make those negative thinking statements, I’m going to hand you a pink card.”

Harry: “What do I do with it?”

Mom: “Turn it over and try on the other way of thinking.”

Harry: “Ok, I’ll try it.”

 

Step Five: Set up contingent, controlled rewards, meaning positive consequences the child chooses and can look forward to. The reward should be simple, controlled: meaning not generally accessible (if the child has ready access to it anyway, it won’t mean anything), dependent on replacing the maladaptive with the adaptive behavior, and given as immediately as possible after the positive behavior.

Thomas’s case:

Mom: “Thomas, I can see you working hard on this ice cube OCD. Ready to tackle it head-on?”

Thomas: “What do you mean?”

Mom: “The doctor says that you can stop OCD’s faster when you exercise your “stop muscle” in the brain.”

Thomas: “That’s her answer for everything. Practice.”

Mom: “True. So she suggests doing ‘exposure-response’ homework. Twice a day, we give you a glass of water or juice with some other number of ice cubes than five. You stop yourself from dumping the ice cubes for five minutes on the timer.”

Thomas: “Then what?”

Mom: “You do what you like with the drink. I’m hoping you just drink it, and find you don’t have to dump it after all. OCD is like a wave. If you wait it out, it passes over, and you won’t feel the need to dump anymore. We can gradually increase the timer to wait for longer lengths of time, till you get to that point.”

Thomas: “Ok.”

Mom: “Once you’re not dumping drinks anymore, we’ll celebrate, and go out and buy some of your favorites!”

 

Harry’s case:

Mom: “So Harry, next time we have a lot of homework to correct, how do you want to handle it?”

Harry: “Just let me do it, and don’t check it.”

Mom: “That sounds like a great goal. I’d love to do that once you’re ready.”
Harry: “What do you mean by ‘ready’?”

Mom: “When you’re checking your homework yourself, and correcting your own mistakes.”

Harry: “Mom! That’s too hard!”

Mom: “So we’ll get there step by step. The first step is checking the first three problems of your math homework yourself today. If you do, and they are correct when I look them over, you get three pennies in the homework jar. We can talk about what you want to use the pennies for- you can turn them in for a playdate or computer time.

In the meantime, what do you think a reasonable amount of time to spend on homework might be?”

Harry: “I don’t know.”

Mom: “Well, your teacher says 45 minutes a day is expected for 4th graders”.

Harry: “Ok.”

Mom: “So let’s set a timer. Do your homework, and we’ll check it together. After 45 minutes you’re done, even if we’ve only corrected part of it. But if you start fussing and complaining, I turn off the timer during the fussing. It only counts, and the timer only restarts when you’re working.”

Harry: “Ok. Let’s try it.”

(Discussion with the teacher ahead of time to give her a heads up on this plan is advisable, so she isn’t caught off guard when some of the homework is turned in uncorrected or even incomplete.)

 

Step Six: Create a hierarchy of specific recurring problematic situations, and tackle them from easiest to hardest. Don’t get stuck- keep moving up the staircase, while you gradually hand over the responsibility of self-regulation to the child by getting him to query/say to himself what you have been saying to him.

 

Thomas’s Case:

Mom and Thomas might sit down and come up with four or five common OCD’s Thomas displays, rank them according to how anxious/how hard it would be to stop doing each one, and work on them one by one, easiest to hardest, with a celebration/reward after each success. For example, Mom could create a staircase with dumping ice cubes on the lowest step, then sitting on every bench they pass by on the next step, then pulling off sticks from our neighbor’s bush on the next, and finally on the top step cutting up yard-long pieces of tape into tiny pieces before doing each page of homework, as these are all problematic OCD’s for Thomas.

For strategies on dealing with OCD’s see my previous blog entitled, “A Contemplative Walk… Working with OCD,” from 2013. The basic exposure/response prevention “homework” is for the individual to intentionally and regularly expose himself to the OCD or anxiety trigger by gradually increasing degrees (for example, if one is afraid of dogs, one would not immediately expose oneself to a huge German shepherd, but start out with a small, very tame dog or possibly even a picture or movie about a dog), and make himself stop (not perform the compulsion or fight/flight response) for increasing amounts of time. Each time he successfully prevents himself from performing the compulsion, the “stop muscle” in his brain (in the basal ganglia) gets stronger, and the OCD gets weaker.

 

Harry’s Case:

Mom: “Harry, how would you rank the things you have to do for school but make you feel anxious or overwhelmed, from 0 to 10?”

Harry: “Like what?”

Mom: “Like correcting your homework, reading a chapter from a chapter book daily, writing a report, or cleaning out your backpack?”

Harry: “Homework 6, chapter book reading 5, report 10!, backpack 4.”

Mom:” Ok, I put the four school tasks on four index cards in rank order of difficulty. I’ll give you all the support you need to get through them all, but we’ll work towards independence on the backpack first. Each time you master a card, we’ll do something really fun.”

Harry: “Can we go to Target for baseball cards?”

Mom: “That sounds good to me! And when you make it through all the cards, I’ll even get Dad to take you to a Angel’s game. So tell me what you know about keeping your backpack in order… ”

 

So there you are, CBT in a nutshell, or at least a flavor of it. CBT is a powerful, multipurpose tool, used successfully in a wide range of psychological disorders, including depression, anxiety, OCD, eating disorders, substance abuse, insomnia, posttraumatic stress disorder, personality disorders, trichotillomania (hair-pulling), tic disorders, and other repetitive behavior disorders. In Thomas’s case, we used CBT to work on OCD. In Harry’s case, we used it to develop a higher frustration threshhold. As parents, frontline and in the trenches, we need this tool.

 

A lot of CBT is commonsense. Teach your child to become more attuned to the body, recognize the physical symptoms of intense emotion and use deep breathing and muscle relaxation to ameliorate it. Address emotional dysregulation in its early stages while there’s still some frontal lobe control (ie ability to use his thinking brain). Teach him to become more self aware, both in monitoring his emotional state and identifying false, negative thinking. Help him learn how to replace it with true, positive thinking, and use a Socratic approach to develop the child’s multicausal thinking, giving him the freedom and support to brainstorm a variety of possible solutions and then to exercise judgment to decide upon a course of action. Show him how to harness motivation and reward to help execute those plans. Work systematically and persistently, from easier to harder, with the goal of transferring more and more control and responsibility to the child for his own emotional regulation. Set reasonable goals and expectations and make the steps as little as needs be for your child to experience success regularly with a reasonable, not heroic amount of effort.

 

CBT has got to be more effective than not knowing what to do, getting upset in reaction to our children’s crazed behavior, and acting out of frustration or trying to take over. So don’t be afraid to try it. Consider reading Dr. John March’s (2007) book “Talking Back to OCD,” or Dr. Anne Marie Albano’s book, referenced earlier. If you need more help, ask your pediatrician for a referral to a licenses psychologist or mental health provider experienced in CBT (you can ask if the therapist has any certification from the American Board of Professional Psychology or from the Academy of Cognitive Therapy). Things can only get better as you start moving your child in the right direction.

 

Disclaimer: CBT is only one tool in a parent’s toolbox. It is most appropriate to use on “crazed” behavior that may be primarily due to biologically-based.(meaning due to neurological wiring or temperament) negative emotion. But a lot goes into a parent’s decision that the emotion is irrational. Lots of times children get upset for very good, legitimate reasons, and those feelings need to be affirmed and their causes rectified, not extinguished with behavioral methods. Also some seemingly baseless negative emotions have deep roots in traumatic memories. You might need other tools to help you uncover and address the pain of these kinds of past experiences, such as psychodynamic or play therapy. Above all, there is no substitute for first and foremost listening to your child, and letting him know you care about all his feelings, rational or not.

Charles Schultz peanuts

 

[1] OCD stands for obsessive compulsive disorder. It is due to a brain glitch in which the individual has a recurrent false thought (like “there are always dangerous germs on doorknobs”) that compels him to perform a compulsion (like “I must wash my hands every time I touch a doorknob”).

[2] CBT stands for cognitive behavioral therapy. It is based on the assumption that thoughts lead to actions, and so if you repair the maladaptive cognitions or thinking, you can improve the behavior.

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