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Posts Tagged ‘anxiety’

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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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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Floortime is powerful play therapy.  You can use it to recreate an emotionally charged event in your child’s life, and allow him to play out different roles and endings as he desires and imagines.  But can you do this with a child with severe challenges in symbolic thinking and language?  Yes you can!  You can even go down to the sensory level if necessary to reach your child and access the event.  In fact, that’s what’s often necessary to help kids with PTSD recover from their trauma.

At the recent DIR Profectum conference earlier this month, I watched a videotape of a grandmother working with her granddaughter on a the sensory level to help her recover from PTSD night terrors and agarophobia a year after a traumatic car collision.  The child was swinging in a net swing and instructing her grandmother on how to push her.  Her grandma was working on stopping the swing as a surprise, to try to recreate some of the sense of sudden stopping that the child had experienced, but change the associations from unpleasant to pleasant.  So the key was making it fun and loving, and also to hand control over to the child.  So the granddaughter got to tell grandma to swing just forward and back, not side to side, and only stop her when facing forward and not while going too fast.  She gradually got grandma to increase the force of her push and stop more abruptly to make it more exciting.  They worked on these “self-titration” exercises over a year, till finally, the PTSD symptoms melted away.

So I tried it with Peter.  He had a hard time getting out of the car the other day to attend his brother’s track meet, as he gets anxious in crowded and noisy places.  So I gave Peter a race track/ramp and car, and watched him self- titrate the how far up he’d release the car on the ramp to control the excitement.  He ended up laughing in excitement when he was able to release the car from the top of the ramp. Then I had Charmander (a big stuffed animal) drive up in a toy car, and watch Peter release the car down the ramp intently.  Charmander grew very interested and leaned as far as it could reaching for the car, but was too scared to come out of the car.  Finally, I asked Peter, “What should Charmander do next?  Sit in the car or come out?”  Peter looked at me and emphatically stated, “Sit in car!”  Then he gently nudged the entire track/ramp next to Charmander’s car, and handed Charmander the racecar.  Charmander didn’t know how to make the car go, so Peter repeated his titration procedure of releasing the car at increasing distances up the ramp.  When he let it go from the top, Charmander cheered, and said, “I see!  You can go slow, and then fast.  Good idea!”  Peter looked at me with a huge smile, as if he really appreciated my acknowledgement of the coping strategy he’d worked out.

So when your child has either a strong emotionally positive or negative experience, think of the theme- as Dr. Greenspan puts it, competition, aggression, fear, excitement, nurturing, or whatever it is- and set up play dramas with dolls, puppets, or stuffed animals around it.  Or set up a sensory experience analogous to the one that affected your child.  Then let your child explore different outcomes, on his own initiative, at his own pace, with your support (such as choices- “Should Charmander sit in the car or come out?”). You’ll be surprised at what you learn, and what your child will tell you about his feelings and desires through play.medium

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friendsChristmas vacation is great, but can seem a bit long for teenagers accustomed to being with their friends and classmates all day.  But what if the teenager is nearly nonverbal, gets really anxious in social situations, and is so hypersensitive to sound that he usually works in his own quiet room off the main classroom?  We never guessed Peter might feel that teenage social pull, until he let us know in his own way.

Near the end of Christmas vacation this year, Peter got on his AT device (Vantage), and keyed in “I want car ride.  School.”  We asked, “Why school?”  Peter replied, “Miss Laska (his teacher).”  We told him, “No school yet, Peter.  Why do you want to go to school?”  As options we wrote,  “Do you miss Miss Laska’s hellos?  Miss your friends?  Want to ask Miss Laska how her Christmas went?”  Peter circled “miss your friends,” adding “I” before “miss” to make the sentence grammatically correct.  “Oh, so what friends do you miss?” we asked.  Peter got on his Vantage and navigated to a list of names of all his classmates.  He then listed all the boys in the class, plus Miss Laska.  We ended up having him write all those names down.  The next day we went to school, Peter walked into the classroom, pulled out his list of names (with prompting), and said, “Hello…”, proceeding to read off all the names on his list.  Then he looked at everyone, said, “Bye!”, waved, turned, and bolted back to his own little room away from the main classroom, his quiet haven.

That was enough for Peter. But I thought it was beautiful. Considering all the barriers to social interaction including anxiety, sensory hypersensitivities, and communication skills, he still had that desire for it, and even managed to express that desire.  I’m not sure how satisfying it was for him to actually follow-through and greet all his friends, but the more practice he gets, the more automatic it may become with time.  Hopefully at some point, the pleasure will exceed the work and effort, and satisfying that desire for social interaction will become easier.  For now, I’m just amazed and grateful that he has it.  Despite everything, under all those challenges, lies the heart of a potential friend.

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