My son Langston was born in 2008. “He’s perfect,” said the parish secretary. She had been in the waiting room, hoping to steal a glimpse of the newborn baby boy. She said it, and I believed it. Not in the theological sense, of course. I knew he was born a sinner like the rest of us. But when I looked at my baby son for the first time and heard him coo and felt him squirm, all I could do was praise God and sing Johnny Cash songs into his little ears, allowing myself to daydream about the doctor or lawyer or rock star that he might become one day.
This is the thing that nobody gets about parents of autistic children. For the first eighteen months, we thought we had the perfect child. There were no signs of looming disaster, no indications that this child’s life and ours was about to be turned upside down. Langston developed normally in the beginning. He hit all his marks. He even knew a fair number of words, more than many of his peers of the same age.
And then, suddenly, it stopped. The words went away. The other behaviors typical for babies, like mouthing objects and babbling, did not. He fixated on certain objects, but he did not play like other children. He laughed and smiled, but he could not look us in the eye when we spoke to him.
My wife and I were new parents. We had grown up in small families. We did not know the first thing about how typical children develop. But as we saw the children in Langston’s playgroup changing while he stayed the same, we knew that something was wrong. At first, we tried to chalk it up to something else. Perhaps he had not yet learned to talk because he was so rambunctious. Perhaps it was simply a heavy case of ADHD. Maybe he just needed some mild therapies to release his full potential. All of these ideas floated through our heads, but by the time he was two years old, and the fateful day came when he had his appointment to be diagnosed, we knew that we had been comforting ourselves with lies. Our child was not like other kids. He was never going to be like other kids. He is autistic. That is not the name of a chronic condition he suffers with. It is a statement of truth about who he is.
Autism is a disorder that a lot of people have heard of but few people understand. It is classified as a neurological disorder, but truth be told, it is a collection of characteristics more than it is a single thing. Autistic people have great difficulty with communication. They often have heightened sensitivity about movement and about how they are touched. It is a spectrum disorder, which means that the way it manifests in people is all over the map. There are some autistic people whom you might never realize are autistic if you did not know. With others, like my son, it is quite obvious. No one knows what causes autism, nor how to cure it. Some therapies have been proven helpful over time, but they do not change the way autistic people understand the world. At best, they make it possible for an autistic person to navigate in a world that has been set up for people who think and act radically different than they do.
Langston’s autism is a burden for him and an albatross for my wife and I as his parents. Our lives are a constantly rotating series of crises, from dealing with spitting and aggressive behaviors to spending thousands of dollars and man hours trying to remodel his room in such a way that he can no longer chew on the woodwork and swallow lead paint. Our lives center around my son’s autism. It is the pinion that spins our gears, the compass that keeps us ever pointing away from ourselves and towards some unknown horizon.
Parenting a child with severe special needs is making me holy. It is forcing me out of the self-centered, personal desire-driven life that I had planned for myself; it is moving me instead into a life of service and humility. And I hate it.
On the day we were given the diagnosis, I broke into a thousand pieces. It was not like we were not expecting it, but when the doctor said the words, “Your son has autism,” any last shred of denial slipped away and I could feel the darkness of the rest of our lives settling in. He was not going to grow out of this. We could not save him from it. Our hopes and dreams for him would likely not come to fruition. Our hopes and dreams for our own lives and for our future would have to change. We would always have this to face. There would be no escape.
After we got home from the doctor’s office, we were too tired and depressed to make dinner. We ordered take-out from a local Mexican place, and I volunteered to pick it up. It was December, and already it was cold like winter. On the way back home, O Come, O Come Emmanuel came on the radio. I pulled over to the side of the road, unable to see through my tears.
O come, O come Emmanuel,
And ransom captive Israel,
That stood in lonely exile here,
Until the Son of God appear.
“Please God,” I said out loud. “Please, I need it to be true. I’ve believed it to be true before, but now I need it to be true.”
Jesus carried us through that winter. He held me when I felt like I was going to fall and just keep falling. His Word, his promise, is the one thing that has kept me going since that moment. It is the one thing that has filled me with hope for what the horizon might look like. If we live in a world that is nothing more than chance chemical reactions, then my son’s life is meaningless, as are our sacrifices for him. However, if we live in a world that is fallen but created good, a world in which evil has come to reign even in our bones but in which evil shall never have the last word, then my son’s life, his eternal worth, has been bought and paid for by the blood of his savior.
Talking about all of this with people who have never experienced anything like it is difficult. People ask me how Langston is doing, and there is always an unspoken question behind the question: “Is he getting better? Is it ok?“
The answer to both of those questions is no. He is not getting better, and it is not ok, but that is not because my son’s existence is totally void of good things or because I derive no joy from being his father. My son is still beautiful. He still makes me smile when he laughs. He has some qualities that I wish I had. He is completely unselfconscious and is entirely uninterested in what he owns or does not own. He is cuddly and silly, and when I look at him in his lack of pretentiousness, I often think that he has the advantage; there is so little for him that might get in the way of his relationship with God. My son says very few words and even fewer phrases, but the other day, he spontaneously said to me, “I want Jesus.” It was a prompt that he had memorized because he wanted me to sing Jesus Loves Me to him, but I still think it was an indication that faith is alive in him. Faith is not an intellectual exercise. As a Catholic Christian, I take comfort in knowing that the Lord is administering grace to my son through the sacraments. Bread, wine, and water put all of us on equal footing in the Kingdom of God.
We live in a society that places value on people based on their abilities, based on how smart they are or what they are able to achieve physically, based on their capacity to spend and to consume. My son does not have value under that metric. He is a non-person in our society. But he is not a non-person in the eyes of God. He is broken, as we all are, but God has put his name on him. When the Father looks upon my son, he sees his own Son who was united with Langston forever on the day of his baptism. Langston’s value is incalculable in human terms. He bears the very image of God.
Jonathan, I really admired this reflection because I thought it managed to be both both very personal and theologically very substantial. It seems we are often offered experience at the expense of the truth, or the other way round.
Most of the things that really and truly make us holier are likely things that we could say ‘and I hate it’ about. But I love being my kids’ dad. I know they’ve help me along my own progress. I know that my responsibility to them has made me more disciplined in prayer, for example, and made it easier to put myself after at least some others. But I’m pretty sure too that my being Stella’s and Harry’s and Walt’s dad might be one of those things that the Holy One might have been talking about when he said, ‘you have already received your reward.’ I get a lot out of it. Reading your very honest reflection about that weight of disappointment sinking in after getting Langston’s diagnosis, I recognized how much my own love for my kids is shot through and supported by these little expectations and dreams, most probably illusory or fictive, but nevertheless there, serving as little supporting rewards for me. Imagining yours getting stripped away sort of exposed mine to me.
So your story reminds me (again)that Christianity has an inescapably ascetic form. What we don’t burn away here will get burned away for us, the Fathers are always telling us. It isn’t much comfort but I still believe it. Following Jesus, daily taking up his cross, dying to self aren’t just concepts for Christian heroism (and fantasies about it) but mostly just unpleasant and humiliating tasks to be performed, cups we’d rather not (and rightly rather not) drink from. We talk about them more than we choose them, and maybe most of us end up doing them only to the extent that we didn’t choose them. But as tough as it is–not okay and not getting better–you’ve found the Lord’s hand held out to you in your being Langston’s dad. And your love, while pained, you are still giving back. And maybe that is abiding in love.
Thanks for sharing your thoughts.