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.