Autism as a gift

I took my ten-year-old son with me to the grocery store last night. He pushed the cart himself. He cheerfully helped put things in the cart and then put them on the belt when it was time to check-out. He even helped me load the car and close the trunk. It was beautiful. I almost cried.

That probably sounds like a strange reaction to parents of typical kids. Many kids would have been doing what he did tonight ages ago. For my son, though, this was extraordinary and wonderful. Because he is severely autistic, there is much that he cannot do for himself, much that is a struggle. For that reason, whenever he is able to do something, our family receives it as a tremendous gift. It is incredibly gratifying to his mother and I to see him doing something independently, and it is also deeply gratifying for him when he finds that there are things he can accomplish on his own.

I imagine that every parent experiences some version of this. As a child reaches new milestones, there is a bitter-sweet kind of letting-go that parents do over and over again. For typical parents, the hard part of that is the realization that some day they will have to let go completely and allow the child to flourish all on his or her own.

My experience is different. My children will probably always need me to help them do even basic things. There is a kind of bitterness that can creep in with that, a despair that perhaps our children will never be able to function on their own, and a befuddlement as to what life means and what it is for when it is so perpetually limited.

Yet scattered amidst the strenuous and monotonous trials of daily life, there are these incredible moments when the joyful truth of who my children are breaks through. It is often something like a trip to the store, but it does not have to be. It can be something even simpler, like a shared laugh. It can be the way one of my sons moves to sit in my lap or touch the back of my neck. It happens in the rare but increasing number of moments in which my boys interact with each other.

My children are a gift. That gift includes their autism. That is a difficult thing for me to say. Frankly, much of the time their autism feels more like a curse. It is a hard life. I fear for them. And in my selfishness, I often pity myself for the things I do not get to experience as a father and the things I have to give up in order to care for them. But their autism really is a gift, not because autism is a good thing in and of itself, but because it forms part of the reality of who my children are, and I am a better man because I get to be their father.

Autism is not a separate reality from my children. It is not something that happened to them nor something added to them. There is not a real them that lives somewhere behind their autism, as if you could take the autism away and reveal a truer version of my children that was previously hidden. They are autistic. So to love them, in some sense, is to love their autism.

The limitations that come with autism are a great burden, both for my children and for their mother and I as parents. Nonetheless, there is a sheer joy that comes in realizing and knowing the humanity of my children, especially in those moments when they suddenly seem capable of engaging the world. I do not know that I would be moved to tears watching my ten-year-old push a cart if he were a neurotypical child, at least not every single time.

I write a lot about how hard all of this is. And it is hard. But when every day is a struggle, every victory becomes a tremendous sweetness. I wish people understood better what it is I experience as a parent and what my children experience in trying to engage with a society that was not made with them in mind. Yet I never want to be pitied and I would not want my boys to be pitied either. There is nothing pitiable about them. They are human beings, fearfully and wonderfully made, bearing the image and likeness of God. And because of that, I grow closer to my Lord every day when I serve them.

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Learning empathy from my autistic children

I like to think of myself as an empathetic person, but I am not. At least, I am not yet.

I do care about people. I worry about friends and family. I feel bad for people who are down on their luck. I sympathize with fictional characters in movies and cry at the drop of a hat.

But when I look inside of myself, what I find more than compassion is blatant self-centeredness. I want others to be happy, but their happiness comes second to my own. I feel bad for others in their suffering, but really I think they should feel bad for me because I have it so much worse. I deserve a break from the mean, cruel world that does not get how hard things are for me, but other people really ought to learn to suck it up and deal.

I need to learn empathy. Fortunately for me, the Lord has given me two able teachers in the form of my children.

I love my boys, but I do not understand them. Their autism frustrates their attempts to communicate and largely keeps them locked in a world to which I do not have access. I am happy when they laugh, but I almost never understand the joke – Was it some funny word I said? The way the light is falling on the floor? What’s so funny about that?

Even more distressing is that I rarely understand what is upsetting them. And something is always upsetting them. Rarely does a day go by without several major freak outs. These go far beyond the tantrums of typical children. They can be long and sustained, sometimes even violent, often lasting for hours on end. When my oldest gets upset enough, he will even bite his own arms, leaving massive bruises.

It is very tiring to live in this environment. It is like living in a war zone. You never know when the quiet will erupt into chaos. And even when things are stable, there is little I can do to connect with my children. I cannot have a conversation with them. I cannot share in their interests  because they largely do not have any. My nine-year-old son’s main interests are showering and baby toys that make noises. How do I connect with that?

So instead I go into my own head. It is surprisingly easy to do. I play on social media, or watch television, or when all else fails I simply turn ideas over in my mind. I become a self-contained unit. I do my best to survive the long afternoons, ignoring as best I can the behaviors of my children that I find most frustrating. I even have the nerve sometimes to accuse my children of lacking empathy because they interrupt my mind wandering with their demands!

What I do not do–what never even occurs to me–is to put myself in their shoes and imagine living in a scary world in which people are constantly talking but I cannot understand them, in which I have many needs and wants but no way to express them, in which the only things that are calming and make any sense are things like the droplets of water coming out of the shower head or the predictable sound effects made by a toy.

Fr. Michael Rennier recently wrote a piece about the great Edith Stein and her advice on cultivating empathy. Stein was a German Jew who became a Catholic nun in the 1930s, taking the name Sr. Teresa Benedicta of the Cross. She was sent to a concentration camp by the Nazis where she died in 1942. Today the Church recognizes her as a saint and a martyr. She was known for her great compassion and kindness even in the concentration camp. Earlier in life, she had written extensively about empathy.

Rennier says that one piece of advice on how to be more empathetic that can be gleaned from Stein’s writing is to get out of our own heads. “Empathy is, among other things, a way of learning to appreciate foreign experiences,” he says. “In the same way that travel broadens the mind, so too does looking at the face of another person and glimpsing another beautiful, mysterious, unique mind. The effort is always worth it.”

Is it worth the effort though? Sometimes it does not feel like it. As my wife says, “Sometimes the juice isn’t worth the squeeze.” Hours upon hours of behavioral therapy, trips out to places where they freak out or refuse the bathroom, controlled environments, medications, repetitive movements, attempts to teach things like simple play let alone something like brushing teeth or tying shoes, and the simplest spark of connection still feels elusive.

But then the tiniest victory in the world melts my heart. My nine-year-old manages to push the cart for a while at the supermarket. My five-year-old walks into a room, looks up at the Captain America action figure on the shelf, reaches out his hands and says clear as day, “I want Superman.” These are moments that are more precious than gold. They are moments when my children move just a bit into the world I inhabit, creating a slightly larger space in the center of the venn diagram in which our worlds overlap. When this happens, I realize for a moment how hard they are trying, how difficult it must be to be them. It is not all about my frustrations or what I hoped parenting might be. It is not about me at all. It is about them. They are the people God has given me to care for. They need me to help them to survive in a world that largely has no place for them. If the only thing I ever do in my whole life is to love, serve, and protect them, it will be a life well lived.

What my children have been teaching me without me realizing it is that my own mind is a closed and lonely place if I do not push past the borders of my comfort. Caring for my kids is not simply a matter of providing them with a roof and three square meals a day. It involves a deeper kind of work in which I make an effort to discover what it means to live in their worlds just as they struggle with how to navigate in mine. If I did not have severely autistic children, I do not know that it would ever occur to me to look at things this way, not just from another person’s perspective but from the vantage point of someone marked as radically other than “normal.” But my children constantly challenge me, which blesses me, because it makes me see that there are so many other people in this world than my limited scope of vision would like to let in. When I see the marginalized, the poor, the oppressed, I see something of my children in them and it opens my heart in a way it never did before.

I am not yet the empathetic and compassionate person I want to be, but with the help of Langston and Micah I am learning.

The Word of God for those who have no words

An old picture of my boys from a couple of years ago.

It is no accident that my sons, Langston and Micah, are named after a poet and a prophet. I have always found my solace in words. For as long as I can remember, I have been a writer, a reader, and a talker. I’m not good at sports. I’ve never been able to draw. I still count on my hands sometimes to do math. But words have always been both my paint and my canvas.

When I imagined being a father, I dreamed about both sharing my words with my children and having them share their words with me. But that has not been my experience. My boys are eight and four now and they are both on the autism spectrum. While there is great variety in how autism manifests itself, for my children it has come in a form that is probably best described as non-verbal. They both have some words at their disposal, but the number is very limited. They cannot have a conversation. They cannot follow most stories. They cannot read. They live inside a world that is largely wordless.

There are many ways in which the communication challenges that my children face are frustrating for them and heartbreaking for me, but none more so than in the realm of faith. I consider it my most solemn duty as a parent to teach the Christian faith to my children. “Fathers,” says Paul, “do not provoke your children to anger, but bring them up in the discipline and instruction of the Lord” (Ephesians 6:4). My children have trouble understanding the most basic things I say. How can I instruct them in who God is and what He has done for them? “Faith comes from what is heard, and what is heard comes by the preaching of Christ” (Romans 10:17). But what good is that preaching if they can’t understand it?

As Catholic Christians, we are fortunate to have a few more tools at our disposal than we might otherwise. The Word of God is to be found not only in the words of a preacher or catechist but in every facet of the Catholic life. My wife and I try to surround our children with the things of God. There are icons and crucifixes in our home. There are songs that we sing. Many prayers can be learned in a rote fashion – the only way that my children ever gain language – and so my oldest is now able to make the sign of the cross and recite the Lord’s Prayer with some coaching, even though he has no awareness of what he is saying.

And of course, in the sacramental life of the Church, the grace of Our Lord is given as a gift to all of us, regardless of our capacity to understand it. I had the privilege of baptizing both of my boys as infants. Like all the other babies I have baptized over the years, they could hardly have been cognizant of what was happening, but that didn’t matter because God was at work. It wasn’t about them getting it. It was about Him giving it.

Yet the sacraments come with their own challenges for my family. The height of the Catholic life is the Mass, but my children are hardwired by their autism to screaming fits and other behaviors that many people find distracting or even outrageous. I cannot help my wife to wrangle them during Mass since I am usually up front leading the service. They rarely make it past the peace.

Moreover, my children have never been able to attend Sunday School. What happens when it is time for them to be confirmed? How will they be able to take on the baptismal promises as their own?

How do I bring my children who live in wordlessness to know the God who makes Himself known only through His Word?

“Is not my Word like fire?” says the Lord in the mouth of the prophet Jeremiah. “And like a hammer which breaks the rock in pieces?” (Jeremiah 23:29). The Word which God speaks is not just an ordinary word. We hear it in ordinary words, but its power is far greater. This is a Word that doesn’t just point us towards God, it actually is God. It doesn’t just act as a symbol for our minds so that we can contemplate God, it actually delivers God to us. It is the Word that became flesh and dwelt among us, assuming all manner of human weakness in that act of self-emptying love. God’s Word can break the rock of my children’s autism into pieces. He can speak to them in a thousand ways that I cannot, because He has been one like them. He knows what it is not to be able to communicate. He knows what it is to be cut off from the world.

I wish I could say that I have the answer to these questions. There are, of course, programs that help to make liturgy more accessible to children like mine. There are good people trying to work through this. But it’s hard. It’s messy. It’s uncertain. I pray for guidance every day. Ultimately, it is a question of faith, not theirs but mine. Do I trust God enough to find a way to give His Word to my children even when I am unable to do so? In their baptism, Christ claimed them as His own and marked them as such forever. I know that some day my children and I will share words. We will worship God together in a shared language of prayer, whether on this side of the grave or in the life to come. There will be no wordlessness in the Kingdom.

The air is Catholic

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Recently, I had the rare experience of having a Sunday off. Since my wife was away, I had the boys to myself and decided to take them into the backyard to play with the hose. This is a more trepidatious procedure than you might at first imagine. Both of my boys, ages 7 and 3, are autistic. Among the many difficulties that are part of that is the fact that they will not necessarily come to me when I call them. Since they also often do knuckle headed things like swallowing rocks or running out into traffic, I have to be all over them when we are outside of the house. And since there’s two of them, I do not often take them outside when I am home alone with them since they could run in opposite directions. But on this particular morning, I decided it was worth the risk. I set up a barricade that kept them either inside our screened in porch or in the backyard and watched them play. While my oldest made the water from the hose shoot up and around in all directions, I helped my youngest draw circles on the porch floor with blue and yellow sidewalk chalk. It was an unusually peaceful time with my boys, and I allowed myself to drink that in. I smiled when they laughed. I smelled the sunscreen I had rubbed on their faces and the grass clippings from the previous day’s mowing. I breathed in the moment, trying to hold onto the feeling, allowing my lungs to fill with warm summer air.

It occurred to me later that there was something essentially Catholic about that experience. That may sound odd since obviously a man need not be a Catholic or even any kind of Christian to enjoy a Sunday morning with his children. Yet what I experienced was not just the joy of the moment itself but the way in which that joy is connected to the whole of God’s good work in the world. I felt a profound sense of connection. The sweetness of the air and the sounds of my kids playing were somehow tapped into the mystery of salvation. There is an endless continuity between that moment in time and the crucifixion and resurrection of Our Lord.

A lot of Christians, including many liturgical Protestants, have been taught that the word catholic means universal. That is true up to a point, but it is not quite as accurate as it is to say that catholic means according to the whole. That is what the Greek words that make up our word catholic, κατά and ὅλος, mean literally. When we say that the Church is Catholic, we mean that she is whole, she is full. When we say that we are Catholic, we mean that we share in that wholeness and partake of that fullness. And that means that our entire experience of creation is part of the deal. The boundaries of our faith are far more expansive than what we might otherwise imagine.

One of the things that is often hard to communicate when evangelizing is the fact that Christianity is a way of life far more than a set of theorems. To be sure, there is a rich and vibrant intellectual life in the Catholic tradition that builds off of the foundation of basic doctrine. Nevertheless, having all the basic doctrine boxes checked will not make you a Christian, nor will reading every word of the Summa Theologica give you a Catholic mind and heart. People today want sound byte answers to their questions about life, faith, God, and all the rest, but what they need is to live inside the heart of God. This is why I think that some of the best evangelism today comes not from having the slickest pamphlets with the best answers but from being forthrightly and unabashedly strange. Consider this:

Undoubtedly weird to see eucharistic adoration happening in a public place, yet by allowing the sacred to invade and inhabit the every day, we begin to wake up to the reality that everything is being made holy by the presence of Christ in the world. In a Catholic worldview, the whole world participates in the life that God has given and restored in Christ. The air is Catholic. The trees are Catholic. The act of walking down the street, of buying a slice of pizza, of feeling the sun on your face is Catholic.

The beauty of the Catholic faith is that it brings together all that is true and good into one whole. It integrates and it elevates. There is truth and goodness to be found in a marketplace, and in a classroom, and in a church, and in the backyard with the children on a warm summer day. The Catholic faith takes each of those goods and binds them together through the heart of Jesus so that they all flow forth with His life. In the light of Catholic truth, every moment becomes eucharistic.