As many Covenant readers know, my oldest son, Langston, is on the autism spectrum. Just this past spring, my younger son, Micah, was also diagnosed with autism.
I have learned a lot from the experience of parenting two children with special needs. For instance, I have learned that people often say really stupid things to you. They do not mean to say stupid things, they just do not know what to say and so they default to something that is often less edifying than what they may have intended.
One question I get often is some variation of, “How autistic are they?” This is a somewhat understandable question, even if misplaced, so it does not bother me that much when people ask it. After all, autism is a spectrum disorder and so simply saying that someone is autistic does not give you a lot of information about what that person’s life is actually like.
But hidden in that question is an assumption that a person can be more or less autistic. This is not the case. It is like asking someone “How pregnant are you?” (Which, by the way, I recommend that you never ask anyone. Ever.) There are stages of pregnancy, of course, but pregnancy itself is an either/or. You either are or you are not. My boys are autistic. They will always be autistic. Even if they were able to pass as typical, they would still be autistic. Calling them autistic is not a statement about their quirks and ticks so much as it is a statement about how their brains are wired.
My children have heavy challenges because of their autism. The challenges are not exactly the same for both boys though. Langston is seven and he is mostly non-verbal, though he has some individual words. He gets easily frustrated because he cannot communicate his needs and cannot always understand what is being asked of him. He needs help doing very simple tasks like brushing his teeth and putting on clothing. He does not know how to play with toys the way they were intended to be played with because his brain cannot process imaginative play. He is often emotionally volatile. Yet he is also amazingly gifted at climbing, jumping, and maneuvering his body into impossible contortions. I have seen him hang upside down from things that you would not believe. He almost never falls.
Micah, on the other hand, is obsessed with letters, numbers, shapes, and colors, and can identify these things far better than many other children his age. Yet he cannot access that information in a way that would be useful, to actually count objects or spell words, at least not yet. He can see the patterns in such things though. In fact, I am convinced he can see patterns that most of us do not. He lines up objects, torn book pages, and other things in ways I never would have imagined. He is a smart, lovable, cute little boy, yet I cannot have a conversation with him, even at the very basic level that a child his age would normally be able to have. He lives in a world in his own mind that I have very little ability to access.
I cannot do so many of the things that I always imagined I would do as a father. I cannot make up stories to entertain my children because they cannot follow what I am saying. I cannot play most games with them unless the game is extremely simple. I love them so much, but I get sad when I think about their future. It is hard to imagine that they will ever be out in the world, leading lives of independence. They need so much help just to do the simplest things. My wife and I joke that we need to live forever, but really it is not a joke. This society is not made for people like my sons. And if the trends of recent years are any indication, it never will be.
Another of the stupid things that often gets said to me: “I couldn’t do what you’re doing.” This one actually does bother me. It is meant to be an acknowledgement of how hard we work as parents, but really it just comes off as a brush off. It is a way of saying, “I’m so glad I’m not you.” And, frankly, it is not true that you could not do what we are doing. If they were your children, you would do precisely what we are doing.
My wife and I did not ask to become parents of children with special needs. It is simply what happened. We are responding as best as we can to the hand that we have been dealt. I love my kids and I would not trade them for anything in the world, but if there had been an option on the menu that said “Autism, check yes or no,” I would have checked “no” every day of the week and twice on Sundays. That is not what happened though, and so we deal with what God has given us, trusting and surrendering to his lordship of our lives, sometimes several times in the same five-minute span. We cannot do what we are doing either. It is pure grace that keeps us moving.
Given what I have said here, it would be easy to assume that we are lost in a muck of depression twenty-four hours a day. That is not the case, though we certainly have our bad moments. There is a kind of joy that exists in special needs parenting, but it is different from the joy I expected when I signed up to be a parent. It is a joy that comes from serving people who need me. It is the joy of knowing that God’s intention for my life is that I give myself as a gift for others.
More often than we would like to admit, we affluent Western middle-class Christians think of the call of Jesus to love and serve our neighbors as an abstraction. We act as though the only way to serve people in need is to go outside of our homes and communities, find people who are radically different from ourselves, and then set up paternalistic structures that allow us to give to them without lowering ourselves to their level. There is a divide that exists between us and those in need. We give to them in various ways — through charitable donations, relief projects, and even through mission trips — yet rarely do we ever cross the divide that exists between us and them.
In my home, there is no us and them. This is not because my wife and I have any great insight or holiness that goes beyond what others have, but because God has given us this gift of autism to make it so. The people that I have been given to serve are my own blood. People tell me all the time how much my boys look like me. I take that as a profound compliment. They look like me because they are me, just as I am them. That sounds like a riddle, but it is not. My children are the people I have been given to serve. Everything I know about how to serve others, I have learned from serving them. It is more than a privilege. It is the very heartbeat of God.
Fr. Jonathan’s other posts may be found here. The featured image was supplied by the author.