When Peter was little, he would make funny faces, squinting and staring at his fingers held up to the side. He would flap and squeal and race up and down the hallways repetitively. It was hard work and took split second timing to get him to attend and engage, a constant staying a step ahead to “akido” his autism by turning a stray whim into a playful game, engineer situations into incidental teaching moments, and create curriculum and educational materials fun and relevant enough to pull him out of autismland into a learning world.

Things did get better. Peter learned to think and communicate. We discovered the warm, loving, hard-working, and compassionate person inside that faulty, uncontrollable body, who would type encouraging words to his friends, patiently endure the noisy splashing of his toddler nephews because he wanted to hang out with them in the pool, and delay coming out of the bathroom not to interrupt an important conversation he overheard his brother having with his aide that he thought “was important for him.” But sadly, the preponderance of his demonstrations of heroic courage, effort, and perseverance occurred in the context of a battlefield- the arena of a constant struggle against mental illness.

I don’t know how many of you, my dear readers, have lived with mental illness, but I imagine if you’re friend or family to someone with autism, you are well familiar. Like many things, it was something no one told us about. Possibly just as well, as the prospect of facing it would probably have dampened our hopes that were so necessary to help us help Peter move up the developmental ladder through his childhood. And thank God for the development of those cognitive and language skills, and the gifts of relationships and emotional bonding that occurred in those childhood years, without which he could not now do battle against the extreme emotional dysregulation that has arisen in his adolescence.

Battle it is. Every day, hard, constant, yet ever changing. You parents of older children with severe autism probably know what I mean. We’ve comforted one another in low whispers in waiting rooms as we’ve shared this world of aggression, self-injury, uncontrolled libido, stims that evolve into massive perseverations and OCD’s, hyperarousal and anxiety, racing, disconnected thoughts and actions, and obsessive eating. Well do we understand the tale of “Dr. Jeckyl and Mr. Hyde” and “Alice in Wonderland.” We’ve met the characters. We know the mad gleam of the eye, and seen the reptilian transformation of a warm, caring upper-brain-controlled beloved son or daughter into a lower-brain- controlled amygdala, determined to have its way. As armor bearers of our children, we support them in battle, handing them weapons of deep breathing, progressive muscle relaxation, trigger avoidance, delay, distraction, exercise, and even CBT (cognitive behavioral therapy) and meditation for some. Sometimes they work, but often the monsters our children battle are overwhelming, and we receive their blows. We try medications, which are double-edged swords. And as the incidence of the incidents cycles up and down, we ask ourselves, will this ever get better?

A couple of moms with young adult children with moderate to severe autism have reassured me that overall, yes, the aggression and self-injury did improve as their children moved out of the teen years. Perhaps the brain adjusts to the hormone surges and the frontal lobes eventually reorganize and myelinate. That gives me hope that if we can just endure this period, some of the worst will pass. I can even see how doing battle everyday with his mental health issues is pushing Peter’s development forward, as he exercises his multicausal and grey zone thinking, perspective taking, sense of values and self-awareness, compassion (which we try to encourage also for himself), and problem solving. Still, until it gets better, in the meantime, living with mental illness can feel exhausting and painful. How do we endure it? How do we help our poor children, who suffer even more, to endure it?

I would not presume to have answers to the mystery of our children’s (and therefore the whole family’s) suffering, but I can share what has helped Peter (and myself) most of all. It is the confidence and knowledge that all this suffering and struggle is not senseless or meaningless, but has a great value. In fact, it can be a very great treasure. This is an ancient belief taught by the Roman Catholic Church, with its roots in the Cross of Christ.

St. Paul writes in Colossians 1:24 “Now I rejoice in my sufferings for your sake, and in my flesh, I complete what is lacking in Christ’s afflictions for the sake of his body, that is, the church.” In Romans 12:1-2 he says, “I appeal to you therefore, brothers, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect. ” St. Peter writes in 1 Peter 4:12-13, 19, “Beloved, do not be surprised at the fiery ordeal which comes upon you to prove you, as though something strange were happening to you. But rejoice in so far as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed… Therefore let those who suffer… entrust their souls to a faithful Creator.”

All Christians believe that Jesus died on the Cross for our sins, that the “wages of sin is death,” and he paid for them in our place with his own suffering and death. We Catholics believe that as part of the mystical body of Christ, Jesus invites us also to offer up our sufferings in union with his own on the Cross, for the atonement of our own sins and those of others, for the salvation of souls. To do so requires that we offer them up with the Spirit of Christ, which means that we strive to “entrust (our) souls to a faithful Creator.”

This is not easy when you and your child are in the fire. “How can I trust in you, God, when my innocent child is suffering like this?” I have cried out upon my knees in front of the Tabernacle. But looking up at the crucifix at the suffering face of Christ, I knew I was angry at the wrong person. No, my God is there upon the Cross. There could be no greater proof of his love than that. Jesus completely identifies with the victim. He came down from heaven to share our suffering and sorrows and lead us through them. To show us the way through the valley of the shadow of death by descending into it himself. And so we strive to endure our suffering the same way Christ did, with faith instead of doubt, hope instead of despair, love of others instead of self-pity, acceptance instead of bitterness.

An old priest once gave a homily on persecution. He said that many of us do not suffer persecution for our beliefs, but do suffer from illness, injustice, betrayal or other blows of life. He offered what he admitted was only a poor analogy. When he was under local anesthesia for eye surgery, the doctor kept telling him to relax, as his terrified, anxious tensing up was only making the surgery harder and longer. He said though it is much easier said than done, we too need to learn to surrender and accept, even embrace our Crosses, for in rebelling against them we only make the suffering worse. It is certainly true that if after doing all we can biomedically and behaviorally to treat and manage effectively our children’s mental illness, we still have to endure a degree (often a very large degree) of it, dwelling on how miserable and unfair it is only intensifies the suffering.

So how does one embrace the Cross? With each crazy incident of OCD or aggression(usually resulting from not allowing performance of a compulsion), Peter and I work through it as best we can (see prior blogs on Stopping, Taking deep breaths, Observing oneself which includes identifying the emotion and doing some self-CBT which involves replacing false, negative thinking with more realistic thoughts and positive coping, and Proceeding with a “Superflex Hero” tactic to replace a maladaptive, reactive behavior with a wiser, more intentional choice, such as removing oneself from a trigger and/or delaying a compulsion instead of obeying it, and talking/typing instead of acting out). Once the crazed wave of emotion and behavior has passed over, we pray about it, offering up our struggle in union with Christ’s on the Cross for the good of souls. Sometimes we pray for a specific person or intention, which makes the offering more meaningful and tangible.

When one offers up one’s sorrows and struggles in this way, in union with Christ’s, they are transformed into a treasure. That treasure is the opportunity to love, trust, and follow Christ even when one doesn’t understand one’s painful circumstances, when one continues to faithfully obey, not for a visible reward, but for love. So one gets to help to make up for what much of the world does to Jesus, rejecting him or ignoring him, saying , “We don’t want this king to reign!” There is a saying that our King rules by serving, and the tribute he asks of us is proof of our love and faith. That is just the tribute we get to offer our Lord when we choose to love, serve, and believe in him, even as we suffer. We get to show him that we follow him not because we get something out of it, but because we really love him. The good thief could see who Jesus was, even when to most others, his Kingship was veiled. Upon our own crosses, we are so close to Jesus upon the Cross that we have the great privilege of consoling him with our love right there in that moment of eternity when, as our beloved Good Shepherd he suffers and “gives up his life for the sheep.” Seeing Christ upon the Cross gives us the courage to in turn stand firm in times of adversity, firm in faith against doubt and fear, shepherding our own little flocks at home and in our communities, “turning all circumstances and events of our lives into occasions of loving You and serving the Church, the Pope, and all souls with joys and simplicity, lighting up the pathways of the earth with faith and love.”

A dear friend of the family, Father G, a visiting priest from Ghana, once told Peter how much he admired him as he could see how hard Peter struggles against his OCD (he resists obeying them, as performing the compulsions only makes them stronger). Father G asked Peter to pray for him and his ministry. Peter replied, “I will do more than that. I will offer up my struggles for your ministry.” Father G told Peter how much he appreciated that, and rejoiced to receive his help. The next morning to get out of bed (always a struggle for Peter with his unruly body and catatonia), I told Peter that in getting out of bed, we could be missionaries to Ghana. After he managed to arise, we offered up the getting out of bed for Father G’s ministry. Peter laughed, “Mom, you love to trick me!” Peter has been offering up his struggles every day since then. The next week was Thanksgiving. Peter was typing what he was thankful for, and among the top of the list was “Thank you for Father G, for giving my struggles a firm vocation.”

We now have a “joke” between us. After a big battle with OCD or catatonia, Peter and I look at each other, and say, “Maybe that one got another soul out of Purgatory!” But seriously, anything we can do to pray for the living or the dead, we rejoice in the opportunity to do so. We are so grateful to our Lord for inviting us to take part in the “priesthood” of our baptism (we believe that every baptized person shares in Christ’s mission as priest. prophet, and king with a commission to offer up spiritual sacrifices and prayers, spread the word of God, and share the joy of being an adopted son or daughter of God, and member of the kingdom of Christ). This is what is called by the Church, the “joy of the Cross,” the knowledge that out of suffering can come good when borne and transformed by the love of Christ; indeed, the greater the suffering, the greater the good that may ensue.

So my prayer for my brothers and sisters in faith and especially for those of you who share this cross of mental illness or helping a loved one deal with it, is that you receive the gifts of faith and grace to endure, and more than endure. May the crosses we all bear lead us all to heaven and bring grace to those we love and pray for.

May you have a prayerful Advent season, with God’s blessings for a hope-filled New Year!




First reading of today’s Mass: Isaiah 41:13-20

I am the LORD, your God, who grasp your right hand; It is I who say to you, “Fear not, I will help you.” …you shall rejoice in the LORD, and glory in the Holy One of Israel.
The afflicted and the needy seek water in vain, their tongues are parched with thirst. I, the LORD, will answer them; I, the God of Israel, will not forsake them. I will open up rivers on the bare heights, and fountains in the broad valleys; I will turn the desert into a marshland, and the dry ground into springs of water. I will plant in the desert the cedar, acacia, myrtle, and olive; I will set in the wasteland the cypress, together with the plane tree and the pine, That all may see and know, observe and understand, That the hand of the LORD has done this, the Holy One of Israel has created it.

What negative social behaviors does your child tend to fall into? Madrigal and Winner, 2008, in “Superflex… A Superhero Social Thinking Curriculum” develop the ingenious concept of giving them villainous cartoon character names, like “Rock Brain” for rigid, rule-bound thinking, “Space Invader” for getting too close, “Brain Eater” for getting easily distracted, “Body Snatcher” for turning the body away from the group or conversation partner, “One-Sided Sid” for not showing interest in the feelings and wishes of others, and “Mean Jean” for not keeping unkind thoughts to oneself. Their “Superhero Social Thinking” Curriculum casts the child as the superhero star as he seeks to unmask each villain from this “Team of Unthinkables” as it pops up in his brain and behavior. The child becomes “Superflex,” the social-thinking superhero, who learns to use “Superflex strategies” to defeat the villains, like noticing what one is doing is not working and to try to solve the problem another way to conquer “Rock Brain,” or to ask oneself “will this hurt my friend’s feelings?” to defeat “Mean Jean.”

This same concept can be applied to faulty thinking patterns. Consider coming up with character names like “Fault-Finder” for blaming, “Mind-Reader” for assuming what other people are thinking and feeling and why they act the way they do without actual evidence, “Negative-Magnifier” for exaggerating the negative and discounting the positive, and “Catastrophizer” for automatically imagining the worst possible scenario. Cast your child as the faulty thinking detective who replaces the unrealistic negative patterns of thinking with positive replacement thoughts.

Peter stood in front of the VCR frantically inserting and ejecting his favorite “Hercules” video over and over. It just wouldn’t play. I stood quietly next to him and watched. “Peter, I don’t think that solution is working. Let’s try putting in a different video to see if the problem is with that particular video or with the VCR machine.” I started to insert a different video. Peter grabbed my wrist with one hand and blocked the insertion slot with the other, “No! No!” he muttered agitatedly.

            “Peter, let’s do a ‘STOP.’ First let’s ‘stop’ this action, and pause a moment. Take a deep breath (the ‘T’, which we did.) Observe yourself. It appears to me, my dear, that you are feeling pretty anxious. Your heart is racing, your hand feels cold and clammy. Do you recognize what’s going on here?”

            “OCD,” Peter replied.

            “Or something related. Remember Mr. Rock Brain, the brain glitch that makes you think you have to do things the same rigid way, even if it’s not working? Do we obey or resist?”

            “Not obey,” said Peter.

            “Ok, so let’s get Rock Brain out of your lower brain! Superflex upper brain, do a ‘Pow!’. Tell Rock Brain that mom’s not asking you to watch this other video. I’m just inserting it to test to see if the problem is with the machine or with ‘Hercules.'”

            Peter proceeded (that’s the “P” in “STOP”) to grab the test video and inserted it. (That was the ‘Pow!’ which could also be what the ‘P’ stands for in ‘STOP’) The screen remained blank. “Ah ha! Good news, Peter, ‘Hercules’ is not the problem. You may put your favorite video back in.”

            Peter ejected the test video and started putting in his favorite, but then hesitated, unsure if he wanted to make this many changes. Wanting him to learn the logic of the procedure, I quickly nudged his favorite in, and switched the machine from DVD to video. “Hercules” sprang onto the screen!

            “There, you see! The problem was with the machine tuned to DVD instead of video, not your video. ” I held up my hand to deliver a high five. “Great job, Superflex, for defeating Rock Brain! You stopped doing the wrong solution, and put in a different video that led to fixing the problem right. Thanks to Superflex, we can now all enjoy watching ‘Hercules’.”

Meditation is an exercise of the mind. There are many types of meditation. Peter and I have found several types to be helpful means to work on emotional regulation.

The first type we tried and still use regularly is the Rosary. We contemplate the main events (called “mysteries”) in the life of Christ and his mother, Mary, and recite one Our Father, ten Hail Mary’s, and one Glory Be for each mystery. We alternate turns reciting the first and last halves of each prayer, so the prayer assumes an interactive and rhythmic back-and-forth. As we contemplate the scenes from the gospel associated with each mystery, attention is shifted away from whatever negative thoughts or emotions caused the dysregulation to the life of Christ. Peter and I have taken “rosary walks” in which we walk together as we pray. The physical exercise is an additional regulating element as it helps work off the adrenaline released by the emotional dysregulation. Persons of faith may use prayers of their own tradition in this manner both to utilize the psychological supports (rhythmic interaction, distraction, and bodywork) such practices provide, and also to obtain the spiritual graces they seek to help free them from the grip of anxiety and OCD.

So on the eve of this last day of October, the month we celebrate the Rosary, I give thanks to God for the gift of this beautiful meditative prayer, and pray that you and your child may also receive the blessings of peace and inspiration that flow from its recitation.

For a beginner’s guide on how to say the Rosary, see the link below:


(You do not have to be Catholic to say the Rosary.)



“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.

We neurotypicals are so used to interpreting behavior and body language a certain way, that our dyspraxic children are commonly if not constantly misunderstood. Just the other day Peter was in the bathroom when his physical therapist arrived. Peter was within earshot when I casually told the physical therapist, “Oh, since Peter’s in the bathroom, perhaps you can talk with Teddy (Peter’s big brother) about physical therapy. He has some questions.” Half an hour later when Peter finally emerged, I said in exasperation, “Peter, let’s get going! Your lesson is half over, and we haven’t even started!” Later I thought I should have been more patient because he probably had been feeling catatonic, and may have been doing his best to move along. I asked Peter. He typed in reply, ” i did not get going. i stayyed in the bathhroom ffor a longg timre because you were all talkiing having an important conversation, good for teddy (about) physical terapy. i earnestly hope he makes it.” I realized I had misunderstood my child, not once but twice. First I assumed willfulness and then I assumed dyspraxia. What I failed to guess were his true, exceptionally thoughtful intentions.

The other day, Peter and I were engaging in one of our favorite hobbies, writing poetry. As a game I invited him to write a poem pretending to be any animal he feels either he shares characteristics with, or wishes he had characteristics of.

Mom: So the title is: “If I were a….”

Peter: Sea Otter

blue green sea splashes against my siddes.

i feel the cold waves lifting my body up and down, to and fro.

i feel the warm sun on my face.

the fine delight of fun before me

a dayfull quickly comes and goes

rolling on the waves

my body agile, responsive, quick

Juggling demands of the sea wwith my own hopes

hearing it roar as i clap another sea treasjure against ,my chest

and take a bite.

Of all the animals he could have chosen, Peter chose the one with “a body agile, responsive, quick.” It must be painfully hard for our children to live with dyspraxia. After fifteen years of experience, Peter has proven to me time and time again that he tries his very best. Yet the deep longing in his heart is to be better than his best. That’s one assumption I firmly believe I can make.



Peter would not get out of the car. It was a hot summer day, I was standing outside the car with door open, and my skin was starting to prickle in the hot sun.

Mom: “But Peter, you love gymnastics! You seemed so eager to go.”

Peter: no reply, no movement

Mom: “Are you having trouble getting your body to move? How about doing it together step by step. Remember? First you unbuckle your safety belt.”

Peter: no reply, no movement

Mom: Maybe that isn’t it. How about we just get into the nice air-conditioned gym. We can sit at the tables and just talk about this. Don’t worry, I won’t try to make you start exercising. We might as well sit in a nice, cool room than sit here in the hot sun.”

To my relief, Peter got out of the car slowly but determinedly, and we made it to the table and chairs in the cool lobby.


I set up Peter’s iPad and keyboard, and asked, “So what’s going on, Pete?”

Peter: “on, a scale of 0 to 5 i’m at a 5.  overstressed.”
Mom: “How come?”
Peter: “i have hot gas in my xesophagus.”

Mom: “Oh my gosh! You have reflux again. Want a TUMS?” I fished one out of my purse, and Peter took it eagerly.

A few minutes later, we continued our discussion.
Peter: “i ythi nk it’as gettinfg better.”
Mom: “Now we know another item that causes reflux in you. Remember how you had a bit of reflux after lunch, but felt better after the Pepcid? But then you grabbed something to eat on the way out that made you worse.”
Peter: “Doritos chili ppowder”
Mom: “You got it! And I’m so proud of you that you used your emotional state of regulation scale to communicate with me.
Because you identified your level of dysregulation, what happened?”
Peter: “i was able to get medicine and rrest. i get to get information on the chili powder.”
Mom “help for now and in the
Peter:  future.”
Mom: “So what do you think of using an emotional thermometer?”
Peter: “it’s good”
Mom: “I am so proud of you because although you didn’t like the idea of the emotional thermometer at first, you still tried, and got pretty fluent at it fast- only 2 days of practice! Helps to be smart!”
Peter: “yes.”


This was a milestone for us. It’s the first time Peter has identified and communicated his state of emotional regulation to avert a meltdown. In the past, we caretakers were always the ones to notice the body language that clued us into how he was feeling, and we were always the ones to initiate the steps to help him calm down.

I’m telling you this story for two reasons


One is to share a practical tool. How many of us experience our kids going from zero to 60 miles a hour in a moment, in terms of emotional dysregulation? That was Peter. He would be trying to hold it together so hard until the moment he would explode. We tried to introduce the emotional thermometer years ago, but he told us it wasn’t useful because he had no warning. He was either at a 0 (no stress) or 5 (meltdown), and was not aware of the levels in between.

So I realized that Peter’s problem was not so much in communicating his emotions, but in becoming aware of them. A key piece in emotional regulation is to monitor one’s emotions. So for example, a person with reasonably developed emotional regulation might feel her blood start to boil during a confrontation with a colleague. She automatically senses she’s getting upset, and takes measures to regulate herself, like asking herself, “This isn’t like me. Why am I getting so upset?” She finds a way to end the conversation like saying, “I need a moment to think about this some more. Can we get back to this later?” She might leave to take some deep breaths, take a walk, talk herself down, vent with a friend, or otherwise regulate herself before thinking through the situation and coming up with the best way to deal with it.


But our kids don’t even realize how upset they are getting until they act out. So we talked to Peter about creating a way to practice this first step in emotional regulation, which is emotional self-awareness. We re-created the emotional thermometer, but anchored the stress levels to specific experiences he could relate to (idea from Dr. Gwen Palafox, meaningfulgrowth.com). So instead of 0 being no stress and 5 meltdown, we let Peter make the definitions based upon his own memories.


Peter made carrides and plane rides a 0 because they were not just no stress, but positively fun.

1 became no stress, like talking to his teacher at school, whom he likes very much.

2 became mild stress, like walking into his doctor’s newly remodeled office- it was different, he preferred the old one, but could handle it fine.

3 was stress, the kind, as Peter put it, “you could handle for now, but not forever.” He matched that to when his little brother Luke was fussing during a long car trip.

4 was very stressed, like when he went to Mass in a different city and the priest tried to give him Communion on the tongue instead of in the hand; it was “when you could hold it together barely, and needed help right away.”

5 was overstressed, as Peter put it, “out of control,” like when the car battery died right when he wanted to get a well-earned car ride. He felt so frustrated that he banged his head.


Then we spent an hour a day setting a timer and having Peter practice identifying his emotional state using the levels he defined on his stress thermometer every 10 minutes. And after just a couple of sessions, he was able to use the thermometer in a real life situation, and got to experience the benefits of emotional self-awareness, identification, and communication.


Now that’s a milestone, a success worth celebrating!


So that’s the first reason I’m telling you this story. To share a new way to use an old practical tool, to fill in the missing piece that made the emotional thermometer useful for Peter.


But there’s another level to this story. I have a dear friend who has almost exclusively used behavioral methods with her child who has moderately severe autism and big behavioral challenges. She asked me the other day what else was there out there to help her son.


The answer is there’s a whole world of intervention out there besides behavioral, and it’s big and deep. That whole world is the inner world of the child, his thoughts, feelings, desires, dreams, his personhood. His right to make his own decisions, and express his personality, to be loved and appreciated and listened to.


Your goal from the beginning has got to be to discover that inner person, develop it, and give it a means of expression.


Don’t get me wrong, I use and depend upon behavioral methods every day. I even teach Peter to use them on himself. This morning when he wanted an extra piece of toast, I told him, “Peter, I’d be happy to give you that toast. But my question is when do you want me to give it to you. I could give it to you right now, which is fine with me, because it will satisfy your appetite. But you could kill two birds with one stone. You look like you’re having trouble moving your body this morning, and I bet it’s hard for you to get up out of that chair and make it to the car. Do you want me to give you the toast in the car?”

Peter replied, “Use the toast to help me get in the car.”

So I made the toast, and held it in my hand. We walked to the car slowly, and Peter happily received his toast.


How different would this picture have looked if I had replied thusly to his request, “You can have that piece of toast if you get in the car.”


That’s the difference between a behavioral contract, and a floortime, person-oriented approach. Both can use behavioral methods, but in one case the emphasis is on what I want and the other on what you want. Internal vs external control, self-determination vs a degree of perceived intrusiveness.


So I’m so grateful for my floortime training as well as all the great tools I’ve learned from behaviorists. Because I could have used a straight behavioral formula at that moment when Peter would not come out of the car. “I’m boiling hot standing out here waiting for you. You were the one who kept asking for gymnastics today. Either come out now, or we’re quitting gymnastics.” “I see it’s taking extra effort to move your body today. If you make the extra effort to come out now, you earn an extra token for TV time later.” Positive or negative reinforcement would have been of no avail. “You’re not coming out, but that’s your choice. I’m going to sit in the shade and wait for you.” Natural or logical consequences (getting overheated in the car) would have been of no avail. Any of these courses of action would have resulted in a meltdown, as the reflux,heat, and frustration would have exacted their toll.


But thank heaven there is another way. The way we all need to be treated as human persons with a soul and will and dignity. To be understood, to be given reasonable options and accommodations. To be given a chance to communicate.


Because that’s where you’ll get your real answers and solutions. From the person himself. The only one who can give you the answers you need to help him.




The campfire crackled, as we sat in a ring around it. It was twilight, and we could just make out each other’s faces as the sky darkened. Some faces were dappled by the deeper shadows of the overhanging oak trees.


It was our first time camping with USARC at Big Bear. Peter, his little brother Luke, and I had set up our tent and were waiting for the campfire introductory talk to begin. We had prepared Peter as best we could for the experience, showing him online photos of camping, describing the fun activities planned, and even setting up the tent the day before on the grass in our backyard. Peter had loved the tent, only reluctantly climbing out so we could take it down and pack it into our car. He had typed, “I think I’m ready for this adventure.”


But as the shadows lengthened, and he sat staring at the crackling fire, the monotone started to grow in pace and volume. “Papa, car ride home, bed, Papa, car ride home, bed, Papa, car ride home, bed…” Pressured speech, cold clammy hands, racing heart- I saw all the signs of a growing monster of anxiety. “Peter, I see you are getting anxious, but you will be okay. Remember how fun it was to sit in the tent? Look at all these other kids like you- they’ve all done this before, and they all came back they had so much fun. It’s new, but it will be fun.” Peter rocked back and forth in his camp chair, humming and chanting his “Papa, car ride home, bed” mantra over and over. But he did not get up to leave.


A lady with a kindly face came over and sat beside us. A USARC volunteer for many years, she quietly chatted about this and that camper and how many years he/she had been coming to camp. Then she turned to Peter, “Peter, do you want to go home?” she asked gently.


I handed Peter his iPad keyboard. As he continued to chant, “Papa, car ride, home, bed,” he typed, “Just fooling. I really appreciate being here.”


The lady looked stunned. I hastened to explain. “You know how we all have mixed feelings- you can feel excited and scared all at the same time? Well, in Peter’s case, the scared feelings tumble out automatically, and that’s what you see. But he really does want to try this adventure, and he really does appreciate everyone’s understanding.”


The lady was delighted and relieved, and continued her comforting chat with me and Peter. Peter made it through the entire campfire talk, and even enjoyed his first sticky s’more.


We still had our challenges that night- I had to kind of trick him to get him to use the bathroom by telling him that even if he wanted to go home, he would need to use the bathroom first, and at one point, he tried to repack the duffel bag into the car, but overall, he did well. He got into the tent and managed to fall asleep, with the help of a thick futon I brought along, a sleeping pill for the first night, and a great book he loved to hear me read aloud. We had an amazing adventure, sailing, fishing, and kayaking.


I’m sharing this experience because it is such an extraordinarily clear illustration of how careful we need to be when we interpret our children’s behavior. Our children are wired differently. Their upper brain, the frontal lobes, center of thinking and judgment may be underconnected to the basal ganglion that initiates movement and action. On the other hand, the lower brain’s amygdala, site of anxiety and the fight or flight response, is overactive and well connected. So whereas we handle our dichotomous feelings adroitly or less adroitly depending on the relative strength of our conflicting emotions, our children tend to automatically express the lower brain, sometimes even when the upper brain is trying its best to exert control.


So don’t be too fast to judge. Work hard to figure out the form of communication that works best for your child. Some children type much better than they can talk. For them it’s important to take the trouble to have a keyboard available for deeper conversations. And keep talking softly and reasonably to that upper brain that may be listening intently despite all the distracting noise of the lower brain expressing itself. “Understanding helps,” Peter often tells me. Not just a passive understanding, but realizing the person really is in there, and to address the person and support those higher intentions that may be hidden inside a locked-in upper brain. Your support may make all the difference in what your child is capable of experiencing, and how wide, joyful, and hopeful his world may become.


As Peter put it,

“i really love sailing.
i feel the wind on my face.
blue sky and lake,
the sound of the wind luffing the sails,
i feel fast and free among friends.”



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