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“NO, Peter! You are not an animal!” I cried, as I brandished a towel like a whip to drive my son away from the food. He had that crazed “raw amygdala” gleam in his eye that I have seen on too many occasions, as he bit into a family-sized apple strudal that he’d lifted whole from the platter. I returned the strudal to the platter, only to protest in dismay as Peter snatched a sizzling sausage from the pan with lightening speed. “Stop it! Stop it! Peter, I told you we were having breakfast after Mass!”

We’d already had a long history that Sunday morning. I had to play tug-of-war with Peter to get the bedcovers off, then had to hang the goggles he loves to tap on the thermostat in the hallway so he’d have to get out of bed to get them. I had to set the timer twice for him to finish his bathroom routine. Even so, he refused to get dressed till I’d fetched the black underwear his rigidity demanded be exchanged for the white one I had previously laid out. It was getting so late by that time, that I didn’t even protest, but just ran to make the extra roundtrip to his bedroom clothes drawers.

Getting from the church parking lot to the front door was another struggle. Peter tends to grab my arm and lean hard upon it. I was so frustrated with him, that I shook him loose. I dashed a few paces ahead of him, saying, “Come on, Peter! You know Peggy (one of Peter’s therapists) keeps saying you should practice walking independently.” I kept walking ahead of him, pausing every ten feet for him to slowly catch up.

By the time we made it into the side chapel, we were really late, and had missed nearly half of Mass. I was so upset with his impulsivity and inertia that I didn’t even want to look at him. But when I turned to my Missalette, I saw the responsorial psalm of the day, “Have mercy on me, O God, in your goodness; in the greatness of your compassion wipe out my offense. Thoroughly wash me from my guilt and of my sin cleanse me. A clean heart create for me, O God, and a steadfast spirit renew within me. Cast me not out from your presence, and your Holy Spirit take not from me.” (Psalm 51:3-4, 12-13)

I felt convicted in my soul. What was I doing, punishing my son with my attitude? He didn’t ask for autism. It’s not his fault that his prefrontal cortex doesn’t have the ready connections to the amygdala that neurotypicals have (NIMH study by Richey and Dichter, Journal of Autism Developmental Disorder, Jan 2015); neither is the miswired circuitry through the basal ganglia causing rigidity and inertia voluntary in the least. But it was Peter who took the initiative. Taking the keyboard, he typed,

Peter: i asdm sorry mom forf everyything.
Mom: I’m sorry too. will you forgive me for the towel and unkind words?
Peter: yes., i actedc badly. i’ll try to do bettter.
Mom: Thanks, Peter, so shall I. Love you.
Peter: i love you too

The rest of Mass flew by. Freed from the heavy angry feeling I carried before, my heart felt light and joyful. My sweet, humble son had not only forgiven me, but had asked for forgiveness, for behavior that was not even his fault, but due to autism. Autism is a heavy cross our children carry. I should be helping Peter carry his cross, but how often do I instead add to it by blaming him for behaviors he can’t control? When he really can’t help it, blaming him for them is like blaming him for having autism, like blaming him for having this cross to carry. I am sorry, Lord. I looked down at the beautiful words on the pages of my Missalette again.Pointing to Psalm 51, I showed them to Peter.

Mom: Beautiful words, aren’t they? They are the words of a famous psalm by King David. Pretty cool that the same words written thousands of years ago express the longings of our hearts even now.
Peter: just marvelous. thanks mom, for making the words real for me.Mom: Peter, you are the one who makes them real for me!
Peter: dear jesusm, may we honor you with our lives and minds, and hearts, amen i thank you for helping me just helping mom hagve gtrace (have grace). amen
Mom: and Peter too! Amen!

Forgiveness. It’s a beautiful thing. It gives life to the dead, and makes all things new. It’s so elementary, we forget about it. Every good parenting book I’ve ever read from Noel Janis-Norton to Dan Siegel talks over and over about how restorative and critical it is for parents to repair rifts in their relationships with their children. How there’s no better way to walk them through the process of asking for, giving, and receiving forgiveness than to demonstrate it in real life situations. How it’s such a great opportunity to grow the children (and oneself!) in perspective taking, problem solving, and emotional understanding. How it makes everyone and the relationship even better and more resilient. But at the time I read all that, I just said to myself at the time, “Yeah, yeah, yeah, I know, I know.”

But at that moment in the chapel the rubber finally hit the road. It shouldn’t, but for me it took supernatural grace to say those words, “Will you forgive me?” When I did, it was like opening a door. I felt a mighty rush of a river of grace, love, and forgiveness from Peter. He was waiting for the opportunity. He was just waiting for me to open the door. So I just wanted to pass on the encouragement I received from this experience to encourage you to open the door. Your children are waiting. They need to hear those healing words, and experience the joy of forgiving and being forgiven, a process that is beautiful, even life-giving to a relationship.

It doesn’t even need to happen right away. It’s never too late. We all need time to reflect. When rifts occur, it’s hard to take in the whole situation at the time. That’s okay. The important thing is not to shy away from reflecting upon and confronting the challenges in our lives, including negative interactions with our kids. So don’t be afraid to go back and recollect; take the time and effort to do so. It’s not just my experience, but on talking with other parents it seems that our children may be the most forgiving people on the planet towards us. They want so much to forgive us because they love us so. So if one messes up, or if there’s a misunderstanding, don’t despair. You can always repair. which leads to restoration and respect. Just open the door.

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Thanks be to God and our Savior Jesus Christ for the great gift of forgiveness!

Happy Easter to all!

“I’m so tired of this!” I moaned, walking through the hallway after Peter and I had struggled through his toothbrushing routine for the 16,000th time. Peter has never got that forward and back toothbrushing motion down despite literally working on it three times a day for 15 years. I guiltily stopped myself too late. Could he have overheard?

 

Later that evening, I steeled myself as I handed Peter a damp towel to wipe down the dining room table, having finished dinner. I had asked him to clear his dishes and bring them to the sink, but he had stayed rooted to his usual spot at the table. After a long pause, I wearily pointed my finger to a spot on the table for his hand to aim for, and back to edge, back and forth over and over to create targets for his hand to move between. When he finally finished wiping the section of the table he could reach from his seat, I said, “Come on, Pete, stand up now, so we can do another section of the table.” Nothing happened. Long pause.

 

I took a deep breath, and made a last ditch effort. I pulled all the chairs far enough away from the table so that a person could easily move from one chair to the next. “Come on, Peter! Here we go!” I sat down on the chair next to him and wiped down the table space in front of me, then scooted to the next chair. “Your turn!” Peter got the idea at once, and slid his bottom to the adjoining chair, wiping the table space in front of him with gusto. Wipe, wipe, wipe, scoot,… wipe, wipe, wipe, scoot,… Without having to stand up, Peter moved from chair to chair, wiping the table with alacrity, grinning ear to ear. I felt at once amazed and delighted, but also deeply humbled. Here I had been feeling so annoyed and impatient, and clearly, Peter was eager to help. He just needed help getting started.

 

We talked about the episode later.

Mom: Did you like our goofy “musical chairs” game to get the table wiped?
Peter: yes.it wwas ffun. i couldn’t get myself to move. i could,n’t gett my feet to srtand up.

Mom: How did the stuckness change when we played musical chairs?
Peter: i dion’t know hiows it works butv when you finally started a game, my body got into a rhythnm.

Mom: Do you know what to do, but just can’t get your body to do it?
Peter:  I do know what to do on most of my chores, but sometimes I feel like I am climbing an unsurmountable height to get my body in motion. Thanks for the game it makes all more manageable.
Mom: This seems to happen a lot. Most of the time when I ask you to do chores or self-help skills, you sit there until I get close to you and offer verbal encouragement and often also physical assistance or gestures.
Peter: i do want to cooperate, but my boddy just won’t move. i really can’t stress enough how hard i try to move. of course i understand how frusttrated you must get with me, but i can”t makee my body go.
Mom: Bet it makes you feel even more frustrated when i get frustrated.
Peter: just sad.

Mom: I’m sorry I make you sad sometimes.

Peter: the sad part is that you try so hard, but i disappoint you.

 

As we were talking, Peter’s dear friend and tutor Miss Belinda came walking up. She started chatting about a talk show she’d just been listening to about changes in American culture. That reminded me of an incident along the same theme that occurred to Peter and me the day before. We were approaching the family/handicapped locker room at the YMCA after swimming when a little girl darted in front of me and opened the door to the single use locker room.

“Excuse me, little one, but do you think Peter and I could use this room since you and your sister are both girls and can use the girls’ locker room? Peter and I can’t be together in either the boys’ or girls’ locker rooms, and he needs my help,” I said.

“I just have to get my shampoo,” said the girl, who looked around ten years old. I stepped aside as she entered through the door.

Just then, a strikingly beautiful young mother came running from behind and pushed her two girls into the locker room. “Peter, I do believe these ladies really want this locker room,” I said to Peter, who was already partially in the room, gesturing for him to come out towards me in the hallway. Peter promptly came out. We eventually found a bathroom we could use, and did fine. But I described the incident to Belinda as an example of how times have changed. When I was growing up, little girls were encouraged to be sweet and gentle, but I suppose the current trend is to put a priority on assertiveness. Just then, Peter chimed in on the conversation. He typed,

“Mom, i’m sorry you were offended but i personally felt ok to let them ha ve uit (the family locker room). ”

“Peter, I am truly sorry for every time I get unfairly impatient with your movement. You most certainly do not disappoint me. Rather, you refresh my spirit, my dear.”

“Just natural,” replied my little gentleman.

 

I share these stories with you to encourage you. We parents get so exhausted accommodating and remediated our children’s deficits. The beauty of their inner selves gets hidden, buried under the weight of their challenges. If we hadn’t fortunately struck upon the musical chairs game, Peter would not have been able to show me his eagerness to help. If we hadn’t reflected on it later, I wouldn’t have known how much he hates to disappoint me, and how sensitive he is to both how hard I’m trying and when I get frustrated. If Belinda hadn’t come along and got us off conversing about that locker room incident, I would not have realized what a courteous gentleman he is. I would have just breathed a sigh of relief that he left the locker room willingly, and chalked it up to a lucky day. But whereas I was annoyed, he was truly happy to defer to the needs of others.

When our children can’t move, can’t express their beautiful intentions through actions because of a faulty start mechanism in the basal ganglia, it’s automatic for us to underestimate them. How they must suffer with constant misunderstanding. So these incidents are a good reminder for me. To take the time to make that extra effort to pull out the electronic keyboard or bring with me everywhere that handy paper alphabet board to check-in with Peter, so he has a chance to be “seen” and understood. And to give him the benefit of the doubt that he has earned over and over throughout years of struggling that he is doing his best, that I keep forgetting, in all my impatience.

“…the Lord seeth not as man seeth; for man looketh on the outward appearance, but the Lord looketh on the heart.”  1 Samuel 16:7

live-deeper.blogspot.com

live-deeper.blogspot.com

Many of us struggle with how to help our children cope with their lower brains. One of the most challenging aspects of autism is the underconnectivity of the frontal lobes to the centers of the brain that initiate action. Since the more primitive connections to the amygdala appear to be much more intact, our kids tend to behave with instinctual “fight or flight” (or “grab!”) responses to environmental stimuli rather than thoughtful, intentional actions. They tend to react rather than respond. Clinically, that looks like aggression and impulsivity, and a general lack of self control.

So as parents we do our best to give the upper brain an advantage by preparing our children before stepping into events, having them read social stories, rehearse, and play out scenes with their stuffed animals or dolls. We monitor and engineer the child’s environment, trying to remove triggers for aggression or impulsivity. Still, many are the times when the lower brain gets the upper hand and goes out of control. We’ve all experienced the crazy, domineering lower brain insisting upon its way, and suffered along with the child as he sorrowfully apologizes afterwards. Clearly, the child’s upper brain cannot get the upper hand of its lower counterpart on its own, and needs our help. How do we help our children stop their lower brain rampages, and reconnect their upper brains?

Peter taught me how important it is for him to receive support in subduing the lower brain. When I asked him if an imperative tone of voice or physical restraint calmed or escalated the acting out of his amygdala, Peter basically told me it was a balance. “by my experience it does help my lower brain to let know who is in control. but my lower brain sometimes gets more aggressive.” So the assisting adult needs to take charge firmly, but not too harshly, to be strong but not domineering, to be authoritative, but also calm and reassuring.

This is definitely easier said than done, especially as our children outgrow us in size.

I tend to overreact , speaking and acting too quickly or loudly, which leads to more dysregulation. But I’ve been trying to change by observing and imitating the two people in Peter’s life who regulate him best. Peter’s tutor Belinda is a petite motherly type. She responds to his acting out by stepping forward (or at least not backward), standing tall (or as tall as she can), firmly and immediately insisting he sit down, and using a calm, very quiet voice to talk him down as she applies deep pressure to his arms, morphing into interactive upper extremity squeezing and clapping games. Peter listens to her based upon the trust built between them over many years.

Peter’s big brother Jeffrey also uses a calm, “I’ve got you, you’re going to be okay” tone of voice. He has the added advantage of competency in martial arts. He custom-created the “teddy bear hold” to keep Peter from hurting himself or others. Step toward the child as you reach for his hands and hold them behind his back, leaning him against the wall with your shoulders and side of the head matched against his shoulders and side of the head, placing one foot upon one of his feet to maintain location. If the child moves or struggles, match your movements with his exactly so as to maintain close, snug contact, your side of head pressed against his side of the head (so you don’t get head butted), your shoulders matching his. This hold is basically a restraining “hug” that prevents the child from acting out in physical aggression while comforting with deep pressure. It works on Peter because he loves deep pressure. It might not work on others; for example, the child who bites might bite the neck of the restraining adult, and one who has had some martial arts training might figure out how to use his free leg to sweep yours away. So think carefully before applying this to your own child (do so at your own risk!).

Peter is the one who basically tells me what works and what doesn’t. After an episode where he lost control when I inadvertently interfered with a compulsion, he was the one who encouraged me.

Peter: I’m sorry i wiped my lips on the couch. you were right, you were just mad so that got my fight reflex activated. sorry mom but hard in getting pushed to behave when i was already trying to handle the wiping ocd.  i very proud of how you managed to get me not violent by holding me down.
Mom: So did the teddy bear hold work?

Peter: yes. i like it.
Mom: Well that’s great. I guess I’m proud of myself too then for learning it. Jeffrey is a genius.
Peter: i think it is effective because it gets my lower brain to give up.

Of course, once the worst of the physical aggression subsides with the hold, you still need to use all your other strategies. See if your child can do some deep breaths with you to activate the parasympathetic nervous system to counteract the bodily hyperarousal of the child’s fight or flight response. Use a calm, reassuring tone of voice. Once the child’s body relaxes, you can see if the frontal lobes have reengaged and the child can communicate with you. You may then bring in whatever emotional regulatory strategy works best with your particular child, whether that be CBT (cognitive behavioral therapy), meditation, music, distraction, exercise, or more talking.

Although subduing the lower brain is necessary, Peter consistently tells me that love and understanding are most important in helping him cope. Someone once said, “How many times can one say sorry, and still be believed?” If you’ve got a run-away out-of-control lower brain that you have to watch helplessly while it does exactly what you don’t want it to do, such a statement would be the death of hope. Whether dealing with addictions, OCD, or other developmental or acquired mental illness, I finally am beginning to understand Jesus’ answer “seventy times seven.” Hope is so important. As Peter puts it, “considering you are not discouraged, then I am not discouraged.” And forgiveness is necessary to maintain hope.

Again, easier said than done. Individuals should not be blamed for what is truly out of their control, but it’s not easy to feel that way when their misbehaviors are repetitive and hurtful. I feel as though I haven’t arrived yet, but it’s a journey my family is on of faith and hope, praying hard, struggling to keep forgiving, keep hoping, keep trying.

And so for 2014 I wish the best for you and all of us, that God grants healing to our kids and the grace for us to effectively help them.

John 10:28-29

“28 I give them eternal life, and they will never perish, and no one will snatch them out of my hand. 29 My Father, who has given them to me,[a] is greater than all, and no one is able to snatch them out of the Father’s hand.”

Sometimes when I feel like I’m just barely hanging onto the hem of Jesus’ garment, I try to remember this promise, and relax. If I can’t hold on, we’ll still be okay, because it’s He who’s got me, and my child.

Happy New Year!

A Big Hug for You Teddy Bear Graphic

A Big Hug for You Teddy Bear Graphic

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!

 

4.bp.blogspot.com

4.bp.blogspot.com

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:

http://www.catholicity.com/prayer/rosary.html

(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.

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