I spent my first four years of life running around Rosedale, Queens, New York City. I have many memories of that house and neighborhood, before moving to the suburbs in Connecticut. I remember the houses being very close together, and I knew where the ice cream truck parked for the night. I remember one girl playing house and making me her “husband,” but I did not recall she had an identical twin. I worry I may have unintentionally cheated on my pretend three-year-old “wife.” Most of all, though, I remember the airplanes. Rosedale is located at the end of a runway of JFK International Airport. It was exciting. The planes were quite impressive and flew close enough to rumble knick knacks off shelves.
The God I knew in my childhood was much like these airplanes. Powerful, impressive, and just beyond my reach, while making me shake in my boots. Once I moved to Connecticut, I ran around the woods instead of the end of a runway, but I would always stop to see jets flying overhead. I struggled with my relationship with God, for I could only imagine the power and strength and not the vulnerability and love Jesus modeled. God, to me, would come and go with great power, just like those planes. I thought I had left that image of God behind, but it took my son for me to see the Divine in the small, the vulnerable, and see God every day.
Today, my wife, son, and I live near SeaTac Airport in Seattle, where we see the airplanes often. I am glad we are not at the end of a runway—we have many knick knacks—but we do get to see the airplanes landing almost every time we leave the neighborhood. There are times when we take local roads right near the airport and a large airplane flies only yards above our vehicle. Both my wife and I think it is amazing and I often remember that house in Rosedale. Our five-year-old, A.J., is unimpressed.
Though A.J. must hear and see these large airplanes—at a friend’s home that is in the flight path he will cover his ears when the older louder ones pass overhead—my son stays in his own little world, which apparently has little interest in these loud, powerful, colorful, fast, airplanes. He is much more interested in the texture of various plants, the repetitive sound of his own voice (called echolalia), jumping, trees, and the alphabet. A.J. lives with autism, and so my wife and I do as well.
I continue to point out the airplanes to my son, not knowing if he cares. I wonder how he will remember these days, because he does not often use words to communicate. He will probably remember specific trees, for it is clear that he looks at the tree in entirety, often even proclaiming aloud, “Tree,” to new ones. When I see an airplane impressively fly overhead and my son is not interested, I am reminded how different my job is as a parent of a child with an invisible disability, because I am able to recall being able to run with the older children at his age and be involved in their activities and trouble, but A.J. does not engage with other children. I notice that he is generally happy, but I mourn most that I don’t have the boy to share airplanes, play ball, or joke with. I have to adapt, but at times I simply want to cry that my son at five still does not call me “papa,” but I don’t for it would be selfish of me.
Every parent can say “this is not what I signed up for.” Honestly, I know neurotypical children who I would have a very hard time watching, let alone living with. There are some things about having a son with autism that are actually advantageous. When we play with toys in the store, he always puts them back before we leave. He never talks back, which I observe is the greatest difficulty with most kindergarten children, especially when it comes to negotiations. However, he is still not toilet trained and is above the weight limit of any changing tables. He does not understand the need to communicate. He has been trained to ask for a few things he desires greatly, via a communication board, such as tickles, deep pressure, back rubs, and pizza. He knows many nouns and actually understands many of our directions and commands; but he currently has no desire or ability to communicate his needs, wants or thoughts. This is frustrating.
Before my son, I had two dogs that were very happy and received a lot of my love. One was a Labrador Retriever-Rottweiler mix, named Manchester, who was very energetic, gentle, smart, and obedient. Not only did he know simple commands, he was smart enough to understand complex sentences. He would perk up at certain words like out, food, couch, ball, walk, vet, car, and would figure out what was happening. People were impressed with how much he could understand and how well he listened. We would often go to parks together and even walk around the small New England towns we lived. It was wonderful dog/person relationship. Manchester had his routines. He communicated in his own way, by a nudge, a grunt, or by jumping when excited.
My son communicates much like Manchester. Manchester nudged and whined when he wanted something to eat. So does, A.J. I share my experiences with this canine and my son, because to the outsider, the relationship must seem quite similar. Those who do not have a child like A.J. need some way to understand how different life is in my house. Comparing my son to other children, especially children without a disability, is unfair, but people do that constantly. As a result, they either see my son as less than other children, or else excuse his peculiar behavior by say things like “all children do that.” A.J. does certainly some things like a typical five-year-old, such as wanting candy, but much of his behavior is closer to that of a typical 18-month-old, not a five-year-old. Most people do not want to see that A.J. has a disability, and they say things with good intentions, but it is clear they are avoiding the reality of his vulnerability, because they do not want to face their own.
My wife and I have had some great progress using communication boards with A.J., we encourage him to sing songs, and we often hear things he enjoys because of his echolalia. So far, other children have loved A.J. and enjoy his energy. Sometimes they ask why he doesn’t talk, but generally, they seem fine with it. At times, I have observed some kids making fun of A.J. for still wearing a diaper. Luckily, he doesn’t understand teasing yet, but it saddens me that other parents must have modeled such behavior, and my son will always be vulnerable to such teasing.
With A.J., I must constantly think about containment. A.J. will run or slink away if his interest is not held. Shopping is a chore even without a child, but now that A.J. does not fit in the cart it is nearly impossible to go grocery shopping with him. At a large gathering one time, he snuck out from the children’s program and was found many yards away. Worse still is his lack of awareness around cars. I must have a hand or be ready to grab him at any moment. My wife and I have considered one of those backpacks with a leash, but it does not help teach him the awareness that can only be learned by holding a hand. We model everything as best we can. We move together more on routine and simple clear words, “stop, come here, juice” and a few others. Often I narrate what he is doing and keep saying things like, “Look an airplane.” I have been told this will eventually help him.
While many of the therapies seem more like tricks and training, there is so much joy and exploration my son has. Though he has trouble with communication, he still adds to the conversation. He does not suffer, but he does need special assistance so we can know more about his gifts. He also has developed humor, from tickling, to the scene of Snoopy wrestling with the chair on the Thanksgiving special. I look forward to more jokes and laughter in our home.
We do not work out of an economy of deficit, but one of gift. That is, each person adds to the conversation with their unique gifts. This doesn’t mean that disabilities aren't difficult; they are. But they are made even more difficult when neurotypical people see those living with disabilities as a drain on resources; as a deficit.
A.J. does not have a disability in order to be a life lesson for me, or others, nor is he one of the “least of these.” We all learn from our children. What I’ve learned from my son who lives with autism, is how terrified others are of the vulnerability they observe in him. Most people do not want to admit that A.J. is different. They try to avoid treating him in a patronizing way or they choose to see his difference as a life lesson. They rather say, “It’s ok” or “He will be fine,” or they start a story with, “I know someone with autism…” People do not want to deal with their own vulnerability, so they avoid seeing A.J.’s disability.
I want to share A.J.’s exciting gifts of energy, humor, exploration, letters, counting, (in English and Choctaw), and cuteness, but also share the frustration and difficulty of having autism. This is why I shared the odd thought I often have, that my son reminds me of my old dog. It is difficult for me as a father, and yes I believe we will progress pass this stage of communication, but we will never remove autism from our reality. No pity needed, though it does require some special accommodations. When we look at all people for their gifts and not their deficits, we see accommodations as important for all of us so we can include everyone. We all benefit and we need to invite everyone to this vulnerability.
I have intellectually talked about a God that is present and interconnected with everyone; I know I have preached it many times. However, since my son was born I truly had to learn it through my whole being, right down to my heart. I do not know all of A.J.’s gifts yet, but he has encouraged me to see my own gifts, rather than my deficits. In my heart I held the image of God as powerful and unattainable, and thus I saw God often only when I felt guilt or shame, when I saw myself as a deficit. I now see God in the dirt and trees through A.J.’s obvious vulnerability. No longer does God fly past and make me tremble, I am rooted among all of God’s children and creation, rooted and interconnected by the dirt and mud puddles that reflect my own gifts.
So when the airplanes fly overhead years from now, I am hopeful my son will be able to say, “Look an airplane.” Even if he does not say it in words, I am sure he will recall the love of his mother and father and understand the Divine is closest in the rooted trees that are vulnerable to drought, wind, and humanity, interconnected through the dirt they all share, no matter their ability.