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Posts Tagged ‘dysregulation’

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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“Come on, Peter, let’s keep going. You can do it,” I said unconvincingly as we slowly trudged down the promenade. We came to Descanso Gardens to try to walk off a 230 calorie ice cream bar Peter had snatched from the grocery store freezer right before check-out.

 

I got him past several benches. Finally it was clear that the inertia was too much to overcome. Peter started squealing, and I knew that the chin-banging would soon follow. We spied a bench next to a duck pond at the end of the promenade.

 

Peter looked at me, hopeful. “Ok, just for a minute, Peter.” He made it to the bench and plopped down in relief. I sat next to him, a ball of frustration and worry. The doctor had told us that exercise was imperative, both to control Peter’s weight gain (due to his insatiable appetite) and to help temper his stimming, impulsivity, and emotional dysregulation (chin-banging). But how were we supposed to exercise when he has catatonia?

 

I didn’t know what to do. But the gardens were beautiful. There was a heavy, dark branch of a large oak draped over our heads like a canopy covered in tiny green leaves, sparkling in the late afternoon light.

 

I pulled out Peter’s iPad. “Under a green bower,” I typed, then offered the keyboard.

 

Peter started typing. The magic of the garden cast its spell of peace over the two of us, as Peter crafted his poem.

 

The quack of ducks. caw of crows,

flap of wings,

the rush of water,

the murmur of voices

happy sounds of a fall afternoon.

 

Under a green bower,

the water ripples, cool and quiet.

A school of goldfish swim by,

a streak of color.

Green heads, blue underwings,

a splash and flash of bright yellow,

The ducks preen,

hoping for a fish.

 

A boy sits and points,

disappointed at the dancing ducks.

I feel the same way.

How I long to hold you

Pretty, fluffy duck!

But you get away.

 

We sat a few minutes, the poem impressing the beauty of the scene into my spirit.

I said, “Peter, I loved your poem! The Lord gave you the gift of words, a gift of something lasting. Whenever I read this poem I can come right back here to this pond and experience it again.” Peter typed back his reply, “Thanks Mom, good poem. I enjoyed it. I wish we could do this every day forever.”

 

Just then, a man appeared behind us. He unlocked the gate to the Rose garden which was sealed off for a ticketed lighted carved pumpkin display to open later that evening. He drove through the gate in his tractor, leaving the gate open.

 

Peter stood up. He took my arm and led me away from the pond back to the path. “Peter, did you want to go this way or that way?” Peter pointed to the gate. As Peter pulled me along, I became intrigued. Before us were hundreds of Jack O Lanterns, some laying on the grass, some suspended in the air, wearing every variety of expression, many glowing softly with lights. Peter urged us on deeper into the Rose Garden, now transformed into a giant pumpkin patch. “Peter, I don’t think we’re supposed to be here. And the gardens are closing, it’s getting late.” Spooky music started wafting through speakers stationed overhead. That persuaded Peter. He turned me round and escorted me swiftly back through the gate, down the promenade, into the parking lot. “We made it, Peter! And no one saw us!”

 

As I related our adventure to Peter’s psychologist, Dr. Gwen, she pointed out how it had demonstrated the efficacy of floortime therapeutic principles. When a child shows signs of emotional dysregulation, consider the possible causes- a sensory or motor issue, primary emotional cause (such as panic attack or OCD), or behavioral (such as anger or frustration from not getting something preferred or trying to get out of something nonpreferred). In this case, Peter had a motor issue, inertia/mild catatonia, and we relieved the dysregulation by sitting down. That addressed Greenspan’s FEDL (functional emotional developmental level) one, getting a child into a calm, regulated state. When I offered the “stem sentence,” “Under a green bower…” Peter engaged with me. That was accomplishing FEDL two, joint attention and engagement. The poem allowed Peter to shift his attention completely away from the frustration of being made to walk when walking was hard and effortful to the beauty of the natural scene before us. Sharing and discussing the poem brought us into FEDL three, back and forth communication, and of course much beyond to a bit of self-reflection. Fully re-compensated, Peter was then ready to engage those frontal lobes to exercise the curiosity that overcame his inertia/catatonia completely and take the initiative (FEDL four) to explore the Jack o Lantern display, and power me swiftly back to the car. Intent, driven by the emotion, not conscious, voluntary, heavy handed willpower was what circumvented Peter’s motor disability, the faulty start signal in his basal ganglia that initiates motor actions.

 

I was both stunned and grateful. Just as embryology recapitulates ontology, so we parents must recapitulate the levels of functional emotional development in the individual scenarios of daily life. When dealing with any dysregulated individual, keep in mind what you do with a fussy baby. You first take care of physical needs and adjust environmental stimuli and demands. (Get in a quiet room, rock the baby back and forth. Choose a beautiful natural place for Peter, let him sit down when motorically exhausted.) Invite, don’t pull the child into engagement. (Smile gently at the baby and coo. Offer Peter the keyboard with a stem sentence.) Constantly attune to your child’s feedback to create a fun back and forth. (Wait for the baby to smile back at you, and adjust the pace and amplitude of your coos and smiles according to the baby’s feedback. Scaffold the offering of encouragement and more stem sentences or phrases unobtrusively, and as needed as Peter crafts his poem). Recognize and encourage initiation. (If the baby starts laughing, widen your eyes and chuckle back. When Peter started pulling me through the gate, I went, though cautiously.)

 

We had a wonderful afternoon at Descanso. I may not have known what we were doing, but upon reflection, I learned a lot. You can’t rush. Those fundamental stages of emotional regulation and attunement are critical, and you must take whatever time it takes to address them thoroughly. I often feel myself pulling, doing 90% of the work to move Peter through an episode of dysregulation. That’s what happens when you’re trying to get through to an upper brain that may be mostly inaccessible at the time. Take down the emotional affective filter first, and then you can talk. The heart has reasons the head knows none of, and dealing with autism frequently requires the heart to lead the way.

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