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.