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The refrigerator door stood open, as Peter hesitated. He handed me the chicken, then snatched it back and put it into the refrigerator, while handing me the fish. Then it was the leftover rice in the pot with an abrupt switch to the leftover rice in the tupperware box. He finally handed me something he wouldn’t even eat after I microwaved it, but instead ran into the family room. He turned on the TV, then quickly positioned a chair facing the corner, back to the TV. He ran down the hall to his little brother Luke’s room, and returned with one of the boxes Luke stores Pokemon cards in (cards emptied out), and started tapping and turning it. I firmly took the box out of Peter’s hands and hid it under the sofa.

“Peter, slow down! What’s going on?”

Peter’s eyes burned as he reached for the box and gasped, “Bok, bok!” (for “box, box”)

“Ok, calm down. Take a deep breath. That’s it. Come on, tell me what’s going on. So what happened there at the refrigerator? Can you write about it?” As Peter started squeezing my hands, I said, “You will get that box. But first let’s put some brakes on this. Remember, when you have an intense OCD, what does Dr. Gwen tell us we can do to delay it?”

Peter typed, “I can harness this sled dog. I can let myself have the box if I finish.”

I told him that was a great idea. If only he would write down his thoughts about what was going on at the refrigerator, then with the chair, then with the hand squeezing. Knowing he loves poetry, after he finished that, I gave him the challenge of putting it into verse, and adding rhymes. After he completed each stanza, I asked him to rate his OCD intensity as higher, same, or lower. I kept hoping he would say “lower” as writing bided time for us. Unfortunately, he kept saying “Same.” I tried to make the best of it, “Hey, you see, it’s not getting worse!” Here are Peter’s first three stanzas (English sonnet form abab, cdcd, efef).

Give me chicken, no let’s not.

Give me fish, no, another mistake.

First the rice in the box, not it’s the rice in the pot.

OCD picks the one thing I hate.

 

The chair in the corner is where I must sit,

Facing away so I can’t see the TV.

It doesn’t make sense, not even a bit.

No matter, OCD’s punishing me.

 

I’m squeezing your hand to wring out my pain.

Give me the box you put under.

I’m taking deep breaths but still going insane.

OCD rips and tears me asunder.

 

Finally after the third stanza,  I asked Peter to rate his OCD. He typed,

“The box compulsion is surprisingly better,

As I delayed it while writing this letter.”

(That couplet completed the 14 lines of an English sonnet.)

“Wow, Peter!” I exclaimed, look at that! See how strong your creativity is!

Peter typed, “Strong enough to resist a 5/5 compulsion.” All lit up, he said with a big smile and gesture, “Bok, peez!”

“At this point, you have definitely earned that box several times over. But I want to know what you, Peter Tran, upper brain, really want to do now. Because OCD has been bossing you around all night and made you pick something you didn’t like out of the refrigerator and sit in a punishing corner. Wouldn’t you just love to slug OCD back one more time? Why not eat a piece of delicious piece of pizza first for dinner, and then get the box?”

I held my breath. I truly was totally prepared to let Peter take the box from under the sofa. Instead, he did something remarkable. He stood up and slowly walked to the kitchen. At one point he stopped, and started to turn back, but I positioned myself between his body and the sofa. Smilingly I encouraged him, “You are doing great, Peter.”

Peter turned abruptly back to the kitchen and headed through the door.

I’m sharing this story because I want to encourage you kids suffering from OCD and you parents trying to help your children deal with it. It may not be possible to completely change the wiring glitch that causes OCD, but you can build up the attention shifting and compulsion inhibition skills required to achieve a long enough delay for the compulsion wave to wane, and the frontal lobe engagement to move that broken record on a different track. Use deep breathing and the hope of eventually getting to do the compulsion to create some relief from anxiety. Help your child to recognize that it’s the intrusive thoughts of OCD, not his own, that are making him feel he needs to do something that doesn’t make sense. Distract him, help him shift attention away by engaging the upper brain/frontal lobes into an exercise you know he likes (In this case, I know Peter loves to write). Support him to initiate a strategy like delay that you’ve talked about together beforehand, and to self-monitor his state of being so he can watch the intensity of the compulsion fall and be encouraged by his own success. Doing something creative is especially powerful and rewarding because the child can create his own ending to the story; if he pretends to be successful, chances are greater he will become successful by being able to process what’s happening and envision a positive ending. Be transparent in your coaching, and tell your child what you are doing and thinking so that he can understand, want to cooperate with, and imitate it. It’s a goal for him to learn how to talk to himself in the same way. Most importantly, signpost his accomplishment. Be the banner bearer of his success. As Dr. Gwen tells us, the one thing that equips your child best to combat intrusive thoughts is the realization that “I can do this. I do have a choice.” That self concept and self esteem is built through accomplishment. So whatever progress your child makes, whatever small step in the right direction he is able to accomplish, even a baby step, proclaim it and rejoice! Developing emotional regulation is a slow process, but with each victory, another inhibitory or attention shifting synapse is born.

Admonition by Dr. Gwen Palafox, illustrated by Clarissa Kano

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

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

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

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

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

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

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

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

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

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

1358651-cartoon-black-and-white-stressed-out-bunny-rabbit-grabbing-his-ears

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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.

 

 

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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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Last inning, bases were loaded, 2 outs. Our team was on the outfield, the score 7 to 6. When we heard the crack of the bat and the ball soar far into center field, the parents of our team all thought the game was over. But then a little outfielder leaned way back, mitt over the fence, and caught the ball, tumbling backwards. The third out! The game was over, we had won, the crowd went wild, and the whole team piled over that center fielder with joy!

 

When the coach announced the MVP for the All Star La Canada Little League and held up the big red trophy, he said, “This player played consistently well over all his positions (pitched a good inning, hit several players in, did a great steal of a base, and got an out on first). But Luke Tran will be known forevermore in this town as the kid who made THE catch!”

 

It was a great day for Luke!

 

I love childhood. I love the innocence, the hope, the belief that all things are possible. In the previous championship game, Luke had pitched one good inning, but the second was tough. He got tired, the bases were loaded, and the inning ended with the mercy rule, which ends an inning after 5 runs. But Luke was indefatigably hopeful. When Papa was reluctant to let him play in All Stars because of the fear of blisteringly hot weather, Luke begged him, “But Dad, I want a chance to win the MVP trophy!”

 

So Papa let him. And little Luke, the same guy who as a first grader could barely sleep the night before and went bright eyed and hopeful to his first Jogathon rally, despite my trying to let him down easy by letting him know none of his brothers or sister had ever won anything at a school Jogathon raffle, and actually won the great cash grab prize, also won the MVP trophy. The same little guy who just flunked his social studies test and got a C on his worldly wise test. The guy who I’m always pulling my hair out to get him to behave respectfully, but whose disinterested saunter and nothing-phases-me toss of the head actually looks pretty cool out on the baseball field. Thanks be to God who mercifully makes a place for each one of his creations, and lovingly bestows upon them gifts like this day which he will always remember.

 

And Peter was there. Laughing and smiling, he later typed, “The game was great. (If Luke hadn’t caught the ball) the other side would have made 3+1=4 runs. I’m proud of Luke!” It was also joyful for me just to sit close next to Peter and Papa right there in the front row of the bleachers in the midst of the community, who all know, understand, and welcome Peter. Thanks be to God for that as well, for this great game, and the families and dedicated coaches who love it, providing this venue for our boys to learn teamwork, practice, perseverance, and hope of dreams that may actually come true.

from dothesnoppydance.blogsot.com

from dothesnoppydance.blogspot.com

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Time for Peter’s triennial IEP. For those of you with children with autism, you know that means lots of testing. (For those who don’t, the IEP stands for “individualized educational program,” and every three years, the school does comprehensive testing to help direct the construction of the child’s curriculum to match his/her level and capabilities).

It was the end of a two hour testing session. Peter and Belinda, his typing aide and beloved tutor, sat across from the psychologist.
“Peter, I’m going to tell you a story, then have you retell it.”
(The following story has been modified to protect the test.)
The psychologist typed: “An ant wanted to cross a stream, but the water was running fast. The ant was scared. So the ant hopped aboard a duck, and rode on its back across the stream.”
Peter read the story. Then the psychologist put the story away.
Peter started humming and flapping. He typed, “I need car ride please.”
The psychologist said, “We’ll be done soon. Let’s talk about that car ride after you finish this last story. It begins like this, (and she typed) ‘An ant wanted to cross a stream…'”
Belinda put her hand on the back of Peter’s right shoulder, as her usual sign of support, and Peter commenced typing, “But the water was scary so…”
Peter started humming louder and looked around wildly. Belinda let go of his shoulder, wanting to relieve the pressure of working, thinking Peter needed a break.
Peter lunged toward the keyboard, “hevgot a car ride.”
“Just a moment, Peter, it’s okay. Just see what you wrote,” said Belinda as she placed her hand back upon his shoulder.
“no. duck ride,” typed Peter, as he self-corrected.

Looking on as an observer, I found this episode fascinating. Clearly, Peter understood what he read, and could retell it. But more interesting than the test result itself is how he did the test. The interaction between Belinda and Peter said a lot about the importance of relationship. During other parts of the test, when Belinda would remove her hand upon Peter’s shoulder, Peter would simply stop typing. He would flap and hum and look dysregulated until she gave him that encouraging look and place her hand upon his shoulder, as if to say, “I’m with you, I will hold onto you, we’re in this together.” As a whole separate reality going on apart from the testing, the looks and smiles they gave one another were a beautiful thing to behold.

When Peter was getting tired and hungry at the end of the test, that relationship was crucial for Peter to hold himself together to make that last big effort to concentrate on higher level cognitive function. When Belinda released her hand, it was as if Peter’s basal ganglia released the gate to automatic thinking, and what came out was what Peter types for the most, “car ride,” his favorite regulating activity. When Belinda came back into the picture, restoring the support of the relationship, tangibly with her hand upon his shoulder, Peter was able to switch back on his higher cognitive pathways, self-corrected, and finished the test.

What this episode so clearly illustrated for me was the profound truth of a fundamental floortime/DIR principle- the critical importance of the relationship. Our children face such overwhelming challenges and obstacles. Peter was hungry and tired. Trying to complete that test required huge efforts to overcome his bodily sensations, maintain attention, tax a short working memory, overcome dyspraxia in order to type, and use language, which is always difficult. Watching that scene, I felt as if Peter was flying a plane, and his relationship with Belinda, her love and support, was his gas. No Belinda, and the engine cut out. Truly, relationship and affect are the glue that holds a child together and through an interaction or task, the fuel that powers development forward and makes it possible.

from Daily Motivation Quote.com

from Daily Motivation Quote.com

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