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I haven’t written for some time because a lot has happened. Peter has been growing leaps and bounds. He did well on his online courses and homeschooling classes last year, so this year we are venturing for the first time into the gen. ed. classroom, having signed up for chemistry. Between remodeling the house, dealing with family health issues, helping Peter’s little brother transition into a new school, managing Peter’s schedule and helping him keep up with his homework, and acting as general secretary of the calendar, it’s been busy. However, I don’t know about you, but it seems the lion’s share of energy goes into mom’s job of emotional coregulation.

Sigh! The things that go on in the space of 24 hours!

Yesterday, without warning, Peter started knocking his head against the car window on the freeway. His tutor got scratched in the process of holding his hands while I pulled over. When I came out and opened the cardoor to the backseat, he grabbed the metal keyboard I offered for communication, and banged it against his head instead. When I took that back, he reached over and snatched the iphone out of its case on my belt and started banging that against his head.

This morning, Peter rummaged through all the kitchen cabinets and refrigerator, searching for a soda. Finding none, he dashed to the garage, and found one in the back of the extra refrigerator, a forbidden beverage loaded with caffeine. We eventually had to lock the garage door to help him sit down and pay attention to his chemistry school work.

We should be doing chemistry at school, but lately the panic attacks have been so severe, that even setting foot on campus triggers one, let alone making it into the classroom. As Peter puts it, getting through passing period is “very stressful and overwhelming; like a busy street in New York City, I imagine.” Often takes Peter 15 minutes of Herculean effort to literally drag his feet the 300 feet from the school parking lot to the classroom.

Though the poor upper brain struggles to get the body to obey, the lower brain is fast. He dripped oil on the table helping me brush potatoes for baking. He paused, noticing, then faster than I could grab the kitchen towel nearby, he smeared oil all over the table trying to get rid of the spot. That’s OCD for you.

Do you have a child like this? What is a parent to do? Is there any hope to remediate this proclivity toward emotional dysregulation and its attendant challenging behaviors?

I do believe there is. With coaching (CBT), mind-body exercises (meditation, attention shifting, daily regular aerobic exercise, deep breathing and progressive muscle relaxation), and a lot of reflection and prayer, Peter has made a lot of progress. You see it where the rubber meets the road. Peter will lunge to scratch, then suddenly stretch out his hands to ask for squeezes instead. He didn’t even want to enter the swimming pool yesterday, but slowly warmed up and eventually insisted on completing his usual 25 laps although it took an hour and a half (we had offered to let him quit at ten laps, but he wanted to keep on going). He used to watch the same movie, Prince of Egypt, compulsively every night, but deliberately took it out of the video player to let his little brother have his pick last Friday because he appreciated how Luke had sacrificed a trip to the store earlier when he was having a hard time. (He’s stopped watching it since.) And the ending to the story about racing to get the caffeinated beverage?  He reached for it, but I snatched it out of the refrigerator first. Yes, Peter grabbed it back from me. But do you know what he did with it? He shoved it back into the refrigerator and chose a diet (noncaffeinated) 7-up instead.

Come with us over the next weeks as Peter posts a series of articles about his struggles with sensory hypersensitivities, motor issues, aggression, impulsivity, anxiety, and OCD. His intent is to share what’s worked for him. His hope is that you’ll share what’s worked for you. Maybe together, we as a community of families coping with autism and its attendant emotional challenges can grow together.

And if you’ve got any magic charms for insomnia, we’d love to hear about that too. Peter got up in the middle of the night again. Which is why I’m posting this blog now.

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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

dong-combat-your-monsters.jpg

dong-combat-your-monsters.jpg

 

Another Day of OCD

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.

camstockphoto.com

camstockphoto.com

An Advent of Hope

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.

jayable.com

jayable.com

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

Morning light in the sky

flows through my window.

I hear Mom’s cheerful voice,

encouraging and gentle,

warming my heart

for a new day.

 

I love the plump, hot sausages

and  fresh bread I devour for breakfast.

 

Then open the books with kind Belinda.

It’s a great adventure.

What secrets of science

shall we unravel today?

What heroes and heroines of history

shall I meet?

They become friends.

 

I ride, I tumble, I glide

through landscape, gym, and water.

I love to move with gentle friends and coaches,

Stephen, Sargis, and Gabby.

Dancing with Mom is my favorite.

The music weaves a song in my steps.

I’m not striving, nor trying;

it’s free and easy.

 

Evening descends.

The colors in the sky

form a palette of gold,

then rose,

then soft purple.

Savory smells of garlic, onion, and soysauce

waft through the air

as I walk through the door.

Aimee puts a big plate in front of me,

hot and delicious.

Satisfied, I rest back in my chair.

 

Then it’s cozy time.

Gliding through moonlit streets,

I wonder who lives in the warmly lit houses,

as Papa takes me on a car ride.

Mom and I type.

We read stories.

King Arthur defeats the Green Knight,

or Beth (“Little Women”) plays the piano

while old Mr. Laurence leaves his study door open

and listens.

They are also friends and guides

as I pass through this earth.

 

You, O Lord,

light the way,

sending your angel before me.

With friends surrounding me,

friends from the past behind me,

a bit of soul shining through each story,

may I shine too in my story.

 

Thank you, dear Jesus,

for giving me a loving, peaceful family,

happy life,

dear parents,

Belinda,

and plenty of every blessing,

that every day there is lots to learn and do,

and love

to share.

Amen

(Belinda is Peter’s tutor, Aimee cooks, Stephen takes him biking, Sargis coaches gymnastics, and Gabby is the best swim teacher in the world. We thank the Lord for all of you!)

funnythanksgivingimages.com

funnythanksgivingimages.com

 

 

A Skirmish with OCD

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.

Executive function skills (EFS) encompass a broad array of important managerial capacities. EFS originate in the prefrontal cortex, which directs and orchestrates the rest of the brain to get something done. They include paying attention, selecting, focusing, initiating, inhibiting, shifting, monitoring, modulating, correcting, pacing, sequencing, anticipating, evaluating, prioritizing, organizing, and planning.

To encourage the development of planning skills, teach your child to make choices and set up his own visual schedule. For example, if he has several homework assignments, let him decide on the order he does his worksheets, and within reason, where to put in breaks, and what to do for his breaks.

You can even start smaller, in a more limited field. Say your child loves to stim by tapping a stick. Within one worksheet assignment, consider letting him decide where to put in short tapping breaks, so that if he has ten math problems to do, he might plan a break after the third and sixth problem. That way he will be more likely to persevere in working without stimming till each of his breaks. He also gets to practice how to plan, initiate, focus, and inhibit, while harnessing the self-motivating power of having more control.

If it was hard slogging getting through those ten problems with only two breaks, help him learn how to evaluate his own planning. “How did that go? Ah, so you could get through three problems without a break okay, but getting through four was very hard?” Give him the opportunity to learn how to modulate his plans. “What do you think you could do about that for the next set? Have a tapping break after every third problem? Sounds like you know what you need- great self-awareness!”[1]

Make planning ahead (anticipating) and putting away (organizing) part of the whole process of doing tasks or assignments. “What will you need for school tomorrow in your backpack?” Work in the practice sequencing. “Let’s go through your day tomorrow. What will you need for math? (workbook and pencil box) Reading time? (storybook) Recess? (snack)”

Teach your child to organize as he goes, instead of letting things accumulate. “Great that you finished that whole worksheet! So where does it go?” “Let’s see the work you brought home. Do you think you’ll need those papers in class again? What should we do with them? Where does this go?” Many parents color code their child’s bookcovers and notebooks, one color per subject. They place a box or shelf by the front door for things the child will need to take to school the next day, so there’s less to gather up at the last minute. The child is given a specific quiet place to do homework, with a drawer for supplies and a shelf for books, and is taught to create a place for everything, and to put everything back in its place.

Teach your child how to make a checklist of tasks and then rearrange the order so he learns how to prioritize. Have him check off boxes or put his word/icon labels of each activity in an “All done” envelope so he learns to monitor his own work completion. That’s the beginning of self monitoring skills. Organize his work in consecutive drawers or file folders so the environmental set up suggests and reminds him of the next step. Let him experience shifting his attention as he moves from drawer to drawer on his own. Once he finds the exercise easy, add some spice to the game with a timer and reward so he gets to practice how to pace himself. You can make use of such a set up to create an independent work station containing several file folders of maintenance activities, meaning activities that practice mastered concepts that you want him to retain (Chapter Seven), which you can rotate and vary. That may be your child’s first step toward learning how to study on his own.

Create worksheet exercises in which the goal is to find and correct mistakes you include intentionally, so your child learns how to check his work. Once he gets good at this, next time he looks at you inquiringly to see if he did his math problem correctly, direct him to think of correcting it himself saying, “It’s great that you want to know if you got the answer right. I know someone who’s really good at checking and correcting.”

Help your child practice using all these EFS with all the support he needs. If you feel overwhelmed, write down specific EFS goals the same way you set academic goals, and work on mastering a few at a time. (See sample at end of this subsection.)

Teach EFS the same way you teach everything else. Gradually reduce your scaffolding as the child becomes more able. Once your child can perform these EFS with minimal prompting, continue to give short, direct cues throughout the day on when to exercise them. “Look over here. I have something important to show you.” (learning readiness) “Pay attention, your teacher said this will be on the test.” (learning readiness) “Don’t start eating until everyone sits down.” (inhibition) “Timer rings in five minutes. Put your things away.” (pacing, anticipating, organization) “Put it back where it belongs.”(organization) “You’ll need to work quickly, as there’s not much time left.” (pacing) “Remember the order of the steps. What’s next?” (sequencing) “Does yours look like the model?” (monitoring, checking) “What’s the order you need to do things to get this task done?” (planning) and “Which of the tasks is most important?” (prioritizing)

Once the child gets used to performing EFS throughout the day on cue, make the cues subtler. Come up with single word substitutes or better yet gestures or hand signals. Then bridge each skill by making the cues more indirect like, “This will be on the test. What should you be doing?” (Looking at what you are pointing at, paying attention). “We need to be polite and start at the same time, so what should you be doing?” (Waiting till everyone sits down at the dinner table before eating.) “The timer rings in five minutes. What do you need to do?” “Where should you put that?” (Back to its usual place.) “We have ten minutes left. What can you do to help you track the time?” (Set timer.) “Oops, are we forgetting something?” (Say if you’ve paused expectantly, and the child skipped the next step in a sequence.) “What could you do to see if you did it correctly?” (Check your work against the model). “That’s a lot of assignments. What’s the best way to go about it?” (Prioritize in order, schedule.)

A good rule of thumb is to use the Socratic Method. Whenever possible ask, don’t tell. If the child is talking too loudly in the library, instead of saying “Use your indoor voice,” try “Look at all the people studying. Do you study better when it’s loud or quiet?” Use every success and failure to help your child understand the purpose of working on executive function skills, so that they become goals for the child, not just yours. “Wow! I’m so glad you did half of your book report last weekend. That way you finished up in time for us to watch a movie together before bedtime.” “Oops! You had your homework in your backpack the whole time, but couldn’t find it to turn it in. Can you think of a way to make it easier to find next time?” The more the child owns the problem and comes up with the solution himself, the more he will internalize executive function skills.

It is common for parents to find that even after teaching these executive function skills, and seeing their child perform them under observation, the child won’t use them on his own.[2] A job well done might be enough gratification for some children to practice EF skills independently. But many children also need a contingent rewards system which offers tangible rewards for performance. So consider putting up a chart listing a few EF skills at a time, and have the child check them off as he does them in return for extra screen time minutes, time with you playing a game, or whatever else he finds motivating that you agree upon. Over time, teach him to create these kinds of reward systems for himself, as a general self-help strategy to use to meet his own goals.

Sample of Executive Function Goals for Peter Tran 2014-15

 

EF Skill Baseline Goal
Planning, evaluating, adjusting, pacing, inhibition Peter makes the effort to follow a timer schedule to restrict picking up sticks on walks, so he is less enslaved to that intense sensory need. Set up his own schedule of increasing minutes of walking before picking up a stick, adjusting the timer up or down according to ability, and creating his own reward or shrinking reward system
Planning, organizing Peter occasionally remembers to grab his bib or earplugs before outings. Peter will pack his swim bag.
Organizing Peter is learning how to save work on the computer into files. Peter will learn to copy and save important work from notes to pages and sort work into different subject files
Evaluating, planning, organizing Peter often resists putting used favorite clothes in the laundry basket, but occasionally changes his mind and makes a big effort to dump a favorite item in the washer. Peter will learn to do a sniff test or # of days worn test to put dirty laundry in the laundry basket, and select and put out fresh clothes on his bathroom shelf
Self-monitoring Peter occasionally independently toilets and puts his clothes on in the morning. Peter will use a check-off list to do his entire morning routine and bathroom routine, including wiping, flushing, dressing, hand-washing, and tooth-brushing.
Self-monitoring, correcting Peter occasionally corrects a misspelling or goes back to capitalize a letter himself. Peter will edit one line of writing himself for each assignment.
Prioritizing, ordering, organizing, initiation (self-study), shifting Peter makes choices as to which assignment he wants to do first. Peter gets three maintenance “homework” tasks like a worksheet of a couple of questions each of math, grammar, and reading paragraph/comprehension fill in the blanks to put in the order he wants to do them, complete them, and put them in a homework notebook with subject dividers.

Like all brain development, learning executive function skills takes time. Try not to get too frustrated about it. We provided virtually all the executive function for Peter, organizing, pacing, and monitoring him, for years as we worked on the fundamentals of engagement, communication, and cognition, before we started introducing EF skills as goals in themselves. As your child grows more capable in the fundamentals, whenever you see the opportunity, such as planning a picnic or deciding on the order of doing homework assignments, try to work on them. If you intentionally and persistently do so, you will see progress. Just try not to get frustrated if progress is slow. You can’t rush brain development. Modulate your own expectations. It happens at the child’s own pace.

 

 

 

 

 

 

 

 

 

 

 

 

[1] So what do you do if your child grabs the stick and stims before finishing the third math problem? One idea is to make a checklist of 3 reminder boxes. Each time your child stims before the agreed upon time, remind the child of the contract, have him put the stick down, and check off a box. If all three boxes get checked off, explain to your child that he needs more help in inhibiting the stimming, and move the stick farther away, or even out of sight to reduce access.

[2] This is especially common in those children with comorbid attention deficit disorder (ADD), which is associated with a 40% decrease in measures of dopamine receptor and transporter activity in the reward centers of the lower brain. (Vulkow, 2009) For these children, a top-down approach of just teaching EF skills isn’t enough to get them to use them in real life. A bottom-up approach is necessary concurrently in which you supplement their deficient internal reward centers with external rewards.