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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.

 

 

As parents, we are all used to doing a lot of emotional regulation, ie soothing and calming. This is especially true when your child has autism, where the amygdala (center of fight or flight responses) may be intensely active, but the frontal lobe inhibitory and modulatory connections take extra time and practice to develop. That translates in real life to lots of tantrums. meltdowns, acting out, and other emotional storms we parents have to figure out how to navigate through every day.

A lot of us have been given a lot of information from our kids’ OT’s on first looking at sensory needs and making sure that we get the hypersensitive child out of noisy, crowded environments, remember hunger, thirst, pain, or the need to go to the bathroom in the child who can’t tell you, and make available the sensory toys they need like putty or trips to the swing or trampoline. This “bottom-up” approach is all good and essential. Got to make sure the lower brain/body essential needs are met.

Assuming those immediate body needs are not the primary issue, our kids’ psychologists make sure we understand how it’s important to address the child’s emotion before we start trying to fix a situation or attempt to problem-solve together. So they tell us to do lots of reflective listening, balance or buffer the child’s mood with our either calming or upregulating (high affect) demeanor, and remember all the hugs and affection our kids might need. That’s what Dr. Dan Siegel (2012, “The Whole-Brain Child”) coins “connecting to the right brain” before you can access the left. Got to make sure essential emotional needs are met.

Our kids’ SLP’s make sure we work hard on helping our kids to verbalize or otherwise communicate their distress, so they don’t have to act it out, and so they have the language they need to negotiate solutions together. This more “top-down” approach develops frontal lobe connections and communication capacities, and is also excellent and essential. Got to make sure the child has the language tools she needs. (Teresa Cardon, 2004, “Let’s Talk Emotions”)

Eventually, gradually, and with repeated practice of walking our kids through these fundamental processes, our kids do improve in emotional regulation. But there is another level that most of us parents perhaps don’t do enough of, sometimes because we aren’t sure our kids have the capacity to do it. That is what Dr. Siegel  calls connecting the left brain with the right brain. That’s when after you’ve done all the above steps, and the child is calmed and regulated, you talk about what happened. You can make learning even more efficient if you not only walk your child through emotionally stressful situations at the time, but reflect and replay them later in conversation and/or play therapy. Ask your child what was going on inside when the explosion hit. Give him/her a chance to identify the emotion, learn to talk about feelings, and recognize gradations or degrees of intensity of feelings, perhaps with an emotional thermometer. You want the child to develop the capacity to recognize an earlier stage of emotional dysregulation, so she can take steps to calm herself and get her needs met before the emotion becomes overwhelming.

Help your child review the event, reprocessing it as you lend your perspective to help her understand what happened. “Oh yes, the circus did seem frightening at first, so we do understand why you cried and screamed so we had to leave for a while. But Mom and Dad were right there the whole time, with a comforting lap to crawl into. And wasn’t it fun to peek into the tent at the last act and see the acrobats? Plus there was that really fun pinwheel you got to blow.” Bring in other memories and experiences that bear upon the situation. “Remember how it was also hard to get out of the car last week when we went to the zoo for the first time? But once you got out and looked around, you saw the elephants and really liked it. Sometimes things are hard at the beginning, but if you give it a chance, you might like it.”

Then help your child apply what he thereby learns from his mistakes. Try what Noel Janus-Norton (2013, “Calmer, Easier, Happier Parenting”) calls “think-throughs.” In anticipation of entering similar stressful situations, you think through the upcoming event with your child as to what to expect and what emotionally self-regulatory strategies the child might initiate if needed. “Hey, tomorrow we’re going to Sarah’s birthday party. It’s a new place, but remember when you went to the circus? That was new too. Yes, you did get anxious, but in the end. remember how much fun we had? Remember this picture? Yep, there you are with a big smile. What did we do when you got anxious? Oh yes, we went outside for a while. You crawled into my lap, and we rocked and hugged under your blanket, and then we got that pinwheel and watched the wind blow it. And then we came back. You know I’ll still be there, I’m coming to the party too. And we can bring the blanket and the pinwheel. And you can tell me if we need to go outside for a while. How do you tell me? Sure, if you can’t find your words, you can point to the door. That will be our secret signal, and I’ll know.” When you do a reflection or a think-through, you are actually walking the child through the steps of cognitive-behavioral therapy, naming the emotion to objectify it and help your child see that it is something she can work on, part of her but not her, identifying the false thought (“all new places are scary and must be avoided”), replacing it with a more realistic thought (“I’ve been to lots of new places before and had a great time”), and brain-storming alternative strategies to screaming or crying (like making a signal to leave for a while, crawling into a parent’s lap, and bringing a transition object).

This process of left-right, top-down brain connection is taking an incident of emotional dysregulation, and making use of it to grow those frontal lobe connections by both looking back and looking forward. Each episode of emotional dysregulation is an opportunity to walk your child through this process, and grow those frontal lobe connections. Especially as she practices initiating the strategies herself, and as you allow her to walk herself through this reflective process, using narration first, then yes/no questions, then leading questions, and finally open-ended conversation, your child will learn to emotionally regulate herself, essentially learning how to do self-CBT (Ann Marie Albano, 2013, “You and Your Anxious Child”).

And I would add, be even more ambitious. Go ahead and introduce your child to bigger concepts like morality and community and virtues. I go ahead and name them. “Hey, Peter, looks like a good opportunity to practice some flexibility.” Or, “Maybe this would be a great time to exercise the temperance muscle.” Madrigal and Winner (2008) have a great book out called “Superflex.. A Superhero Social Thinking Curriculum” where they give the maladaptive behaviors goofy villainous names like “Rock Brain,” so that the parent can say, “Hey, I think Rock Brain just showed up,” and the child can take on the personae of “Superflex Hero,” and brainstorm alternative more flexible courses of action.

Does this all really work? Maybe for your “high functioning” child, you might say. But most parents I’ve met of seemingly less able children tell me they suspect there’s a lot more in their child than meets the eye. Peter was labeled as severely autistic, nonverbal, and low functioning at one time. But even when his expressive communication was at a very primitive level, I kept talking to him as if he could understand, just in case he could. With each episode of emotional dysregulation, I went through all the steps of bottom-up, right-left emotional regulation to try to help Peter feel his needs were met and that he was understood. Then after he had calmed down, we’d work on the top-down problem solving, and at the end of the day do reflections to work on the left-right brain connections. I started out doing nearly 100% of the work, but scaffolded my support and let him do more and more of the work, as he showed the capacity to do it, and developed more and more communication. Believe me, it wasn’t at all as smooth as this summary is making it sound. I didn’t know what I was doing, until I read authors like Cardon, Siegel , Norton, Albano, and Winner later and could be intentional about it. (That’s why I’m sharing this with you, so you can be intentional and efficient to begin with.)

In any case, whatever bumpy, twisty road we took, Peter did learn. He has developed frontal lobe connectivity to an extent that at one time I would have doubted possible. The other day, we went to the community park to watch the Memorial weekend fireworks. What I saw on the outside, was a somewhat anxious teenager who was holding onto my arm for part of the time, but seemed to have matured a great deal compared to his level of anxiety as a child. What I found out later after reading the poem he typed about the experience, was all the hard work of emotional regulation he had been doing for the most part on his own, and the sense of community and love, a highly top-down approach, that ultimately held him together and transformed his experience. (In the story, Joe, Teddy, Luke, and Judy are all siblings; Judy, his oldest sib has two young children of her own.)

 

Memorial Weekend Fireworks, 5/24/15,

by Peter Tran
“Hurry, hurry, Luke put on your coat.”
grab your shoes and open the door.
“Grandpa, tuck those elbows in,
don’t you remember banging them
through the last doorway?”
We rolled him safely through the front door,
and hoisted him onto the front seat.
We all piled in.
Then we arrived,
corner of Foothill and La Canada Blvd,
heart of our fair town,
busy, bustling.
We spied two tall lanky figures,
Joe and Teddy waiting to receive us.
We paused behind a firetruck
and unloaded Grandpa and his wheelchair.
I felt numb.
Crowds of people
all smiling and talking.
Mom grabbed my arm sand propelled me through a maze
of picnic blankets, chairs, and baby strollers.
It was chaos.
I heard a flood of brassy notes,
the high school jazz band playing their hearts out.
Hold on, don’t panic, it’s all just in fun.
I relaxed as the noise diminished.
Phew! the music stopped.
I sank  into my comfy lawn chair.
Dad was there, Luke, coughing from asthma, rolled on the blanket,

Teddy positioned Grandpa’s chair, and Mom miraculously
found Judy and the babies.
Then after a  brief lull,
darkness descended.
That’s  when it started.
Boom, sizzle!
Nothing prepared me for what followed.
The sky exploded in color!
Gold, crimson, all shades of brilliant hues,
spinning, darting, bursting bouquets of flashing stars.
The sights and sounds engulfed me.
I didn’t have ears enough to hear all the music,
reverberations from the explosions filled my head.
Then it was all over.
The lights went on,
and everyone started gathering
their blankets, ice chests, and children.
Pressed in by the happy crowd,
we flowed liked molasses slowly down the street to our cars.
I felt safely insulated by my family,
and families like ours,
friends,
my community,
And even Grandpa was smiling.

edgewaterparklodge.com

edgewaterparklodge.com

My point is, even though developing emotional regulation may be hard in our kids, and takes a lot of work and time, don’t despair. Over time and repetition, those frontal lobe connections do grow. Tackle episodes of emotional dysregulation from the bottom-up, top-down, and left-right, looking back with reflections and forward with think-throughs. Each episode of emotional dysregulation may thereby become an opportunity to connect the parts of the brain and get them to work together. If you miss a few, don’t sweat it. Heaven knows our kids give us plenty of opportunities to practice again!

I don’t think most people realize the beliefs of Margaret Sanger, the founder of Planned Parenthood and movement to legalize abortion. I was shocked when I googled her name on Wikipedia. The following is taken from http://en.wikipedia.org/wiki/Margaret_Sanger#Eugenics

“Sanger’s 1920 book endorsed eugenics.
As part of her efforts to promote birth control, Sanger found common cause with proponents of eugenics, believing that they both sought to assist the race toward the elimination of the unfit. Sanger was a proponent of negative eugenics, which aims to improve human hereditary traits through social intervention by reducing the reproduction of those who were considered unfit. In ‘The Morality of Birth Control,’ a 1921 speech, she divided society into three groups: ‘the educated and informed class that regulated the size of their families, the intelligent and responsible who desired to control their families however did not have the means or the knowledge and the irresponsible and reckless people whose religious scruples prevent their exercising control over their numbers.’ Sanger concludes ‘there is no doubt in the minds of all thinking people that the procreation of this group should be stopped.’  Sanger’s eugenic policies included an exclusionary immigration policy, free access to birth control methods and full family planning autonomy for the able-minded, and compulsory segregation or sterilization for the profoundly retarded. In her book The Pivot of Civilization, she advocated coercion to prevent the ‘undeniably feeble-minded’ from procreating.
Sanger also supported restrictive immigration policies. In ‘A Plan for Peace’, a 1932 essay, she proposed a congressional department to address population problems. She also recommended that immigration exclude those ‘whose condition is known to be detrimental to the stamina of the race, and that sterilization and segregation be applied to those with incurable, hereditary disabilities.'”

I don’t know about you, but her writing sends chills down my spine. Her view of the worthlessness of whom she calls the “feeble minded” and “unfit” is so cruel, dark, and untrue that reading her words makes me feel like I’m looking down a black hole of death and despair.

On the other hand, my sweet Peter is on his way soon to the state capitol to receive an award for winning first place in a state high school competition for literature. Here’s the poem he submitted:

The world as a garden

the green stillness of an oak forest.
the sound of birds singing, squirrels chattering, crickets chirping,
the sun upon the mountaintops,
the blueness of the sky
these make the world beautiful.

The taste of chocolate chip ice-cream,
the swirl of a hot Jacuzzi
the thrill of a roller coaster,
the joy of riding my bike
these make the world a fun place.

the warmth of my mom’s smile
the chatter and laughter of my little nephews,
the gruff nod of my grandfather
my tall brothers playing card games,
my little brother sharing his snack
my papa when in a good mood
these make the world a warm, loving place.

you and I can be friends.
we can plant a garden,
make the earth a garden
that we tend with loving care
with room for everyone to
to be free to be themselves
loved for what they are.
that would make the world a better place.

Contrast the two writers. Their visions could not be more diametrically opposite. When I read Peter’s view affirming the value of every individual and the vision of the people of the world tending the earth like a garden together in loving friendship, I know in my heart that that is the vision I choose as well. I will not go down the slippery slope of abortion to a vision of a society that decides who is worthy of life and who is not. Peter and the other beautiful individuals I have met in my journey in autism are my real experience. Margaret Sanger is absolutely wrong to the core. I am prolife and stand against the culture of death together with my brothers and sisters of all “unfit” and misfit diagnoses. As Peter put it, “I hope our nation never loses its belief in God because then some people will seem to cost more to help than they are worth.” But to Jesus we were all worth dying for, “fit” and “unfit,” more gifted and more challenged, saint and sinner. I pray we may all open our eyes to the beauty in each person, and plant a culture of life with love and respect for everyone as a nation.

Currently our nation is at another crossroads. Let’s pray together that the Holy Spirit enlighten the Supreme Court as they make their deliberations and move the justices to make the right decision, with the grace of humility and wisdom, that they might lead our culture to the Lord, following His holy will.

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