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Archive for the ‘Peter’s writing’ Category

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

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

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

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

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

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

 

 

 

 

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

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

I sat between Peter and the drawer.

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

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

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

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

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

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

Rubberband, rubberband, elastic and round,

Rubberband, rubberband, sing your song.

“Boing,” stretch, dangle, and pull,

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

 

But holding it between my teeth,

Is not a thing to really eat.

OCD, the very picture I look,

Dangling like a fish on the hook.

 

So instead of keeping you in my head,

I’ll use you to get out of bed.

Mom, put it in my bathroom cup.

I’ll chase it there, and thus get up.

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

“Yes,” he typed.

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

“From 4+ to 3+.”

“So how powerful is your creative power?”

“Very.”

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

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

“Ten minutes,” he replied.

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

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

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

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

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

 

 

 

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

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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Peter was having a tough battle with his OCD this season, repeatedly asking for “Target,” to buy swim goggles or gift cards that he would promptly cut up or break. I tried to help him by delaying doing the compulsion, and turning it into a reward that he could work toward by earning points doing good things (like homework problems, swim laps, or chores). What was really neat was how Peter decided to use his hard-earned points not for going to Target to buy goggles, but to buy his big brother a Secret Santa gift. What follows is the poem Peter wrote to his brother to accompany the present.

Goggles vs Gifts

I want to go to  Target
As the earth goes round the sun,
Like eating Lays Potato Chips,
You cannot eat just one.

I love the stacks of goggles.
Orange, pink,and green.
I love the cups at Starbucks there
With the shiny, thermal, sheen.

Marking pens of rainbow hues,
Chips and snacks galore,
Gift cards crisp and nice to tear
From any local store.

If I could go to Target,
I’d see that bull’s eye red.
I’d walk right in, and see the bins
and the escalator ahead.

Up I’d go, it’s quite a show
Of Christmas goods and cheer.
Children running round my feet,
My arm ’round mother dear.

I’d stride right to the goggles
And pick a perfect blue,
But then I’d think, OCD you stink,
I don’t need something new.

Christmas isn’t for buying,
Though I like the fun and mirth,
But to celebrate God’s gift to us,
To rejoice at our Savior’s birth.

So instead of spending points I’ve earned
On goggles I don’t need,
I’ll spend them on a gift for you,
A Secret Santa deed.

In my heart, I gladly part
With goggle-y, worldly wealth,
To offer to my Savior
A better master of myself.

Merry Christmas, all!

snoopy

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Proposition 62 proposes to end the death penalty in California. The death penalty is when the state executes a person for committing a capital crime, like premeditated murder. Instead everyone already sentenced would get life imprisonment without possibility of parole, which is when you get out of jail early for good behavior under supervision. Current California law generally requires that inmates work, and that part of their earnings go toward restitution of the victim, or in the case of homicide, the victim’s family. The bill increases the percentage that may be taken from the inmate’s wages from 50% to 60% to give to the victim’s family. This proposition came about for moral and financial reasons. What is the history of the death penalty, what is the scope of the problem, what are the moral and financial arguments for and against it, and what should we do?

In 1972, 40 states plus the District of Columbia had death penalties. The Supreme Court struck them  down because they were arbitrarily and capriciously applied. Thirty five states created new death penalty laws, but in 1976, the Supreme Court struck down the ones that made the death penalty mandatory for any capital crime. But if judges and juries use their discretion, weighing the variables in each individual case, the ruling does allow them to apply the death penalty (Lincoln, 2016). In 2002, the Supreme Court ruled that the execution of mentally retarded defendants violates the Eighth Amendment’s ban on cruel and unusual punishment. In 2005, the Supreme Court ruled that the execution of juvenile killers is unconstitutional. On November 6th, 2012, an attempt to repeal death penalty in California failed (CNN, 2016).

Worldwide, 140 countries have abolished the death penalty since 1976, when the US Supreme Court revived it. In 2010, the US ranked fifth in executions behind China, Iran, Pakistan, and Saudi Arabia.  Nationwide, of 8,124 people sentenced to death between 1977-2013, only 17% were executed, 6% died of other causes, 40% got other dispositions including acquittals, and 37% remain in prison (Lincoln, 2016). In California since 1978, an even lower percentage of convicts who get the death penalty get executed, and an even higher percentage sit solitary in cells waiting to be told if they will live or die. Of 930 individuals who have been convicted, only 15 have been  executed, 103 died of other causes, 64 sentences have been reduced, and 748 are in appeals. Of those 748, two fifths have been on death row for more than 20 years. California spends $55 million annually just on the cost of appeals (Padilla, 2016).

Does the death penalty make any sense? Overall, the cost of execution is eight times higher than keeping an inmate in life imprisonment because of the huge costs of a sentencing trial, which is an extra trial required above and beyond the trial that determines guilt vs innocence, appeals, and extra security (Prejean, 1993). Yet even with the high dollar amount, injustices abound. 120 people sentenced to die have been exonerated (USCCB, 2005). The death penalty is applied to a tiny fraction of homicide convictions. The chances of getting the death penalty does not correspond most highly with how bad or heinous the crime.  Instead your  chances of getting the death penalty for a capital crime are much higher if you’re poor, black, or if you live in a southern state like Texas or Oklahoma (USCCB, 2005; Lincoln, 2016). The quality of court appointed attorneys for the defense can be poor. Federal appeals courts find constitutional errors in the proceedings in 40% of cases reviewed (Prejean, 1993). Finally, the death penalty does not seem to serve as the deterrent to homicide as it was meant to be. There is no difference in capital crime rates in states that have more executions (USCCB, 2005).

So are there any good reasons for the death penalty? One big problem with life imprisonment is the possibility of parole. 71.3% of violent offenders are rearrested within the five years after release from prison (Bureau of Justice Statistics, 2005), and in 1997, a third of prison admissions were from parole violators (BJS, 1999). The alternative to the death penalty would have to be life imprisonment without possibility of parole to protect the public’s safety.

How about the families of the victims? More and more victims’ families are telling us that the execution of the offender does not give them peace.

“No one in our family ever wanted to see the killer of our brother and his wife put to death. We felt instinctively that vengeance wouldn’t alleviate our grief. We wanted this murderer in prison so he could never hurt another person. But wishing he would suffer and die would only have diminished us and shriveled our own souls. Hatred doesn’t heal. Every time the state kills a person, human society moves in the direction of its lowest, most base urges. We don’t have to make that choice. Our lawmakers have the capacity to help us abolish the death penalty and along with it, the fantasy that it will make the pain go away.”

—Mary Bosco Van Valkenburg for her mother, Antoinette Bosco, sister Margaret Minier, and brothers Frank and Paul Bosco (USCCB, 2005)

So the death penalty doesn’t work in terms of costs to the state, nor as a deterrent to crime. Injustices abound in terms of who gets the dearth penalty, and corruption exists in the granting of pardons (Prejean, 1993). Then there’s the moral question. Should the state, in the name of all of us, ever put someone to death when there is even a small chance of killing an innocent person, when we can protect the public’s safety with the alternative of life imprisonment without parole? Even if the convict is guilty, do we have the right to cut off any chance that he/she may repent and do good in the future?  In “Dead Man Walking,” Sister Helen Prejean tells her journey of going through the whole process of appeals and the execution of a man convicted of murder as his spiritual adviser. Two brothers, Pat and Eddie, kill two teenagers in the woods. The older brother, Pat takes the blame though his younger brother, Eddie, did the killing, so Pat gets the death sentence. In the end, Sister Helen leads Pat to apologize to the victim’s family, befriends the father of one of the victims who ultimately heroically accepts the apology, and counsels Eddie, who is in life imprisonment as an accomplice. Even Eddie, laden with guilt over causing the deaths of three people, including his own brother, finds a measure of peace by working hard to give part of his earnings as a token of restitution to the victims’ families. Her description of the execution puts into question if any of us would want to be responsible for yet another death. The miracle is that grace can penetrate even the darkest of situations, like the exchange between Pat and the victim’s father, and how even Eddie improved. I believe that mercy and forgiveness, with life imprisonment without parole to keep the public safe, is a much better alternative than the death penalty.

I urge everyone to vote “yes” on Proposition 62 and “no” on 66.

 

edited by Joyce Tran

References

  1. Alex Padilla, (Nov 8, 2016) “Official Voter Info Guide for CA General Election.”
  2. CNN library, updated 10/24/16, “Death Penalty Fast Facts”, CNN.com
  3. Fay, William, Msg. and the US Conference of Catholic Bishops, Dec. 2005, “Culture of Life and the Penalty of  Death.” Washington DC, USCCB.org,
  4. Lincoln, Alan, “Death Throes: Changing How America Thinks About Capital Punishment,”Harvard Magazine, volume 119, no. 2 , Nov-Dec 2016.pp. 56-95
  5. National Institute of Justice, Bureau of Justice Statistics, nij.gov
  6. Prejean, Helen, C.S.J. (1993) “Dead Man Walking” New York: Random House.

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Here’s an article many of us can relate to about a mom’s experience chasing after her preteen son as he exploded with anxiety: https://medium.com/@awsamuel/an-open-letter-to-the-police-officer-who-helped-my-autistic-son-5ebb51478cc0#.jkt6fycti

Overwhelming anxiety is a common problem with our kids. How do we help them in these acute situations when all their instincts tell them to bolt?

Peter wrote this a year ago, after getting through such an experience.

(After reading it, please share your experience and advice too!)

Heart racing, breathing fast, palms sweaty,

head full, like a can of soda shaken up,

I’m ready to explode.

I can seemingly hold together,

but I’m like a Leggo man,

falling into pieces.

One light tap,

I’m lost.

 

This is a poem I wrote to calm myself down recently while I was waiting to get my blood drawn at the doctor’s office.  It’s a description of what anxiety is like. Anxiety is the overwhelming feeling that affects many people, both neurotypical and autistic. I have lived with it ever since I can remember.

The cause of anxiety is a normal reaction to threats gone awry. The lower brain has a structure called the amygdala. It is responsible for the reaction to threats and danger that is  supposed to help you survive. Your heart rate goes up, your breathing gets fast, and your mental alertness goes way up, which is called being hyperaroused or hypervigilant. That way your body is ready to flee or fight danger. That is the emotion of fear or anger, respectively. I don’t know why the amygdala chooses fear versus anger, but anxiety is the fear.

The problem is, my anxiety gets triggered too easily with threats that aren’t really threats. When I was little, I remember Mom telling me  all the time not to be afraid. I would curl up into a ball on the pavement of a crowded street, hoping to hide from too much busyness. Mom would have to play games with me to get me to go to new places. I remember her having me look for things, like “Go touch a pumpkin,” “See if you can count ten of them,” or “Find the chicken, next the pig,” to get me deeper into a pumpkin farm and away from the entrance. Finally we jumped aboard a tractor for a hayride that I loved. Going to new places should have gotten easier with each success, but we still have to work on it.

There are several strategies that have helped me the most to cope with anxiety. These are illustrated in a blood drawing experience, which I’ll go through step by step.

For days before my appointment, Mom talked to me about how my doctors needed this or that blood test, so I understood why it was important to get my blood drawn. My upper brain was completely on board and partners in the mission. I needed to know what to expect. Mom took me to visit Kirby, who is a nice, friendly phlebotomist, so I could see what phlebotomists are like and what they do. I even sat in the chair where he draws blood, though I didn’t want him to try.

On the morning of my appointment, I got up a bit late, but in the car Mom gave me a nice breakfast. It’s important not be hungry. She brought this cute stuffed dog she said was scared, that I needed to calm down and draw its blood. So my tutor Belinda had me practice with a real tourniquet, needle, and tubes. She explained that when the blood goes into the tube, you shout, “Success!” She even had me wrap up the dog in her sweater to comfort it. Mom asked me if I wanted to get a vaccination done at the same time after the blood draw to get it over with. I thought that would be a good idea because vaccines keep you healthy.

I met my new doctor, Dr. Larsen. At the end of my appointment, Dr. Larsen recommended a vaccination. He looked sternly at Mom like she should insist, but Mom looked at me, and asked me again. I assented. I appreciated getting to make my own decision.

After the doctor left, there was a long wait before the phlebotomy team came into the room. I was getting more and more anxious. Mom tried to distract me by reading funny poems because I love poetry, but I kept turning off the iPad because I was too anxious to enjoy them. I wrote the poem above, and it made me feel a bit better to express myself. Otherwise, I think I would have run away.

After a long wait, three people came in. One was huge, another carried a tray I knew had needles on it, though she tried covering it up. Fear seized me, my heart started pounding, and I got up to run away. I heard Mom say, “Calm down, Peter, take a deep breath,” but I didn’t care. I saw them put on their purple gloves. I felt they were ganging up on me. I said, “Pee pee” and headed for the door, but Mom caught me and said I could go after blood drawing. I didn’t really need to go, but it was worth a try. Then Dr. Larsen poked his head in and asked how it was going. The leader, who had introduced herself as Wendy said, “Not yet, there might be too many people in the room.” She sent everyone away except Mom and the giant. That was a relief!

Then Mom asked if I wanted to be folded up in the sheet like my dog. I said, “Yes.” I felt safer in the sheet, because my actions didn’t require so much effort to control. Mom put on the tourniquet. Ben, the giant, gave me a big bear hug. That helped prevent lower brain from getting any crazy ideas to escape. Mom and I started counting. The needle went in, but I barely felt it. Mom took the tourniquet off and loosened her grip so the blood would go in the tubes. When I saw the blood, I thought “Success!” I didn’t even realize it, but Mom told me later she wasn’t even controlling my arm at that point. I was holding still on my own. When Wendy said, “All done,” I felt relieved. Mom said, “You did it!” I was very proud.

Mom asked if I still wanted the vaccination. I surprised her and said “Yes.” Ben showed me pictures of his four kids, one only 3 months old. By then my stress level had fallen to a 2 out of a 5 point scale. I felt relieved that the worst was over. And the worst really wasn’t that bad.

I got the vaccination as easy as a blink of the eye. Then I thanked Ben. I said, “Thank you, Ben, for keeping me safe.” He said, “Oh my God!” and put his head down. I felt so grateful my adventure was done, and grateful it was successful.

I left! I realize fear is the worst part, and that blood drawing is a small annoyance. Next time I’ll tell “panic dog” to remember our success and relax. Kind of doubt it will be that easy though.

These are the principles behind what we did. Explanation and rehearsal got the upper brain on board. I understood why I needed the tests. I had practiced with visiting Kirby and with the stuffed dog, so I knew what to expect. Getting to switch roles and be the phlebotomist helped decrease my fear of the phlebotomist, and taught me words I could use to soothe myself later, though I forgot them this time. Writing poetry helped because it let me express my feelings in words instead of exploding. For most people. it makes you feel better to talk.

It was important to take a bottoms-up approach too. I’m glad I had a good breakfast. I would have had too much to handle if I was also hungry. It was great to get to see Ben’s family pictures because relationships count for a lot. I couldn’t have held together without Mom being there.

Finally I want to talk about how there is a balance in applying physical restraint. When a lot of people entered the room I felt threatened, like I was being cornered. Later when the phlebotomist wanted me to hold still for the blood draw, it would have been too hard to do on my own. The wrap, Ben, and Mom kind of held me together. If they had been harsh though, It would have made me more anxious, and I would have run away. So you have to be firm, but very nice. Then the anxious person can trust you and feel safe.

The next week I went to the dentist. I felt very anxious and wanted to flee. but Mom held onto me from behind as I wouldn’t sit in the dental chair. That felt warm and snug like a hug. Also she counted again which is great. It’s too hard to live with anxiety forever, but you can stand it if there’s a time limit. So be sure to count backwards.

In the future, I might do better. I have a sleep study coming up where I will have to try to tolerate electrodes on my head and legs. I can prepare for it by watching videos on Youtube to see what sleep studies are like. I can say to myself that there’s nothing harmful or painful about the test. I had a similar test when I was little. I remember having things stuck on my head, and wearing a box around my waist. It went okay. It didn’t hurt, though the electrodes were annoying. Mom will be with me, so we can get through it together. We got through the blood draw, and I didn’t think it was so bad after all.

I learned some important things about myself from these skirmishes with anxiety. The phlebotomy team is made of nice people. I was especially happy to have the opportunity to encourage Ben. So sometimes stressful circumstances can lead to some good. I learned that I’ve grown. I didn’t fall apart. I could use my upper brain to think of getting away by asking to use the bathroom. But even better, I was able to breathe and listen to Mom’s words of reason and truth. I can trust her, and the rest of my team. i realize I am becoming resilient. Not a Leggo man at all.

by Peter Tran

 

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Hard getting out of the car.

My feet felt reluctant as

I dragged myself into the gardens.

My mind was full of start and stops,

jerky, telling me I had to

jot down endless words.

Mom said, “Come on! Ten steps

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

I knew she was trying to help me move,

but my feet kept stopping.

I had to keep jotting.

Then she challenged me,

“If we get to the top of the hill,

we can sit down!”

Off she went, striding ahead,

I got going… I had a goal…

Felt good to move those legs,

breathe in the soft late afternoon air,

golden, then rosy, then gray.

The obsessions lifted

as my feet picked up.

The canopy above was dark and green.

The forest dampened the noise

in my spirit.

We made it to the top.

I sat by a fountain, tinkling water,

white foam decorating the edges.

Mom turned on music,

“Fields of Gold.”

I got up to dance.

“Slow, quick, quick,”

the rhythm of the dance

phased in and out.

It carried me out of my OCD

like a gentle wave.

The late afternoon turned to twilight,

and darkness was descending fast.

We hurried down into the darkening forest.

As we exited the gate,

something seized me.

“Target,” I had to

“Walk to

Target.”

Mom sat me down on the curb.

We googled the distance.

Ten miles, 3 hours, 8 minutes.

To earn points for a trip to the store,

I did grammar,

sentence after sentence of

pronouns, past participles, and commas.

Night descended.

Too dark to see.

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

So I got into the car.

We drove home to a tasty dinner.

Another day

dodging

OCD.

by Peter Tran

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

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

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

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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!

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