Dan Berrigan said, “If you’re going to follow Jesus, well, he got killed. That’s just part of the job description: making trouble for peace.”
French sociologist Jacques Ellul wrote, “One thing, however, is sure: unless Christians fulfill their prophetic role, unless they become the advocates and defenders of the truly poor, witness to their misery, then, infallibly, violence will suddenly break out. In one way or other ‘their blood cries to heaven,’ and violence will seem the only way out. It will be too late to try to calm them and create harmony.”
I knew that it was likely to happen one day, but Noah had never mentioned it. Naively, I assumed that maybe he just stayed under the radar of kids who would bully him. I was wrong. Yesterday in the car I was lamenting how I saw a student make fun of another student today. Noah, in a very matter-of-fact way, replied, “Yeah, kids make fun of my shoes.” I felt like someone punched me in the gut.
I wanted to ask a million questions at once…Who is this punk and where does he live? Did you tell a teacher? Did he do anything else to you? Did you feel physically threatened? Why didn’t you tell me? I would have bought you new shoes! Great shoes! Awesome shoes! Way better shoes than he has…[continue Psycho-Mom rant here]
I managed to swallow back all of my fear and anger and ask instead, “What did you do?” Noah calmly replied, “Oh, nothing. This stuff just happens.” I asked if he would like new shoes. Looking out the window as we pulled into our neighborhood, Noah replied, “No, I’ll get new shoes when I outgrow my old ones. We don’t buy new shoes because of that.”
Henri Nouwen , in Adam, tells the story of Adam Arnett, his “friend, teacher and my guide” at L’Arche Daybreak community in Toronto. Nouwen served as Adam’s caregiver and, after Adam’s death, felt compelled to write how “Like that of the first Adam, our Adam represents every human person and thus more easily raises the question: ‘Who is your Adam who speaks to you about God.’”
I suppose Noah, in all of his autistic mystery, has spoken to me about God more than anyone I have ever known. His calm response was more than just an indicator that he doesn’t feel social pressures due to his challenges. Something in the tone of his reply let me know that he had just completely seen through an uncomfortable encounter with humanity. While it took me a few moments to grasp a Christ-like response, his insight was immediate. Nouwen wrote about the aptitude people with disabilities show in displaying better responses to the world and it’s pressures.
He was a person, who by his very life announced the marvelous mystery of our God: I am precious, beloved, whole and born of God. Adam bore silent witness to his mystery, which has nothing to do with whether or not he could speak, walk, or express himself, whether or not he made money, had a job, was fashionable, famous, married or single. It had to do with his being. He was and is a beloved child of God. It is the same news that Jesus came to announce, and it is the news that all those who are poor keep proclaiming in and through their very weakness.
Unfortunately, there is a very loud, consistent, and powerful message coming to us from our world that leads us to believe that we must prove our belovedness by how we look, by what we have, and by what we can accomplish…We need to hear the message announced and see the message embodied, over and over again. Only then do we find the courage to claim it and to live from it.
Noah reminds me there is a better way to live and respond to the world, a Third Way. Often times, for his brain, this different way is his default and I am left wondering which of us is really “disabled.”
How beautiful upon the mountains
are the feet of him who brings good tidings,
who publishes peace,
who brings good tidings of good,
who publishes salvation,
who says to Zion, “Your God reigns.”
 Henri J.M. Nouwen, Adam, God’s Beloved (Maryknoll, N.Y.: Orbis Books, 1997), 15.
 Ibid. 17.
 Ibid. 36-37.
I’ve had a week filled with questions about a lot of things. Things concerning the future and things about what happened in the past. At some point though, we just have to start moving forward as best we can without a plan. Making that happen when surrounded by paralyzing doubt is easier said than done – even when we’d really like it to happen.
I’m not new to uncertainty. I embrace it so well on a philosophical level sometimes that my peers fear I am overly dark or pessimistic. I’m not a negative person; I’ve just accepted a reality where God has allowed free will, which creates a degree of openness and chaos from which we don’t always benefit.
But the feeling of not knowing how to move forward, or which direction would cause the least amount of potential damage has been like holding my breath for months. I’ve felt surrounded by doubt, fear, failure, loss, and grief. Struggle as I might, I’ve been unable to swim to the surface.
Sunday at church, I read a hymn that gave me another alternative. In addition to the doubts and fears, I can also have “Christ be with Me.”
Christ be with me, Christ within me,
Christ behind me, Christ before me,
Christ beside me, Christ to win me,
Christ to comfort and restore me,
Christ beneath me, Christ above me,
Christ in quiet, Christ in danger,
Christ in hearts of all that love me,
Christ in mouth of friend and stranger.
If I believe Christ-following means taking up my cross (which I do) then I can anticipate that loss and grief will be reflected in my Way. I am following in the steps, after all, of Christ before me on his cross. But I can also know that comfort and restoration surround me as well – in both quiet and danger.
This week I am listening for his voice in the “mouth of friend and stranger,” searching for the strength and hope to move forward. Still surrounded, on all sides.
 Hymnal: A Worship Book (Elgin, Ill.: Brethren u.a., 1992), 442.
Just a few weeks ago our life was made more complicated. In addition to the challenges that autism already presents, Noah’s pediatrician gently let us know that he was at risk for diabetes. This meant a couple of things were going to need to change – more exercise and better diet. We loathe change.
So we’ve been making small changes. We taught Noah how to ride a bike. (Which is fodder for an entire separate blog post.) He now has a myfitnesspal account, as well as a fitbit, to help him monitor his calorie intake and activity. The visual component of both sites really helped him understand our goals. We are going to the gym and hitting the treadmill every day. As it turns out, I found grace there today.
Teaching Noah how to operate the treadmill wasn’t the most difficult thing I’ve ever taught him how to do. He took to it pretty well. He likes gadgets and electronics, so it was instantly easy for him to catch on to the general operation of the device. But there are “side-effects” to Noah’s efficiency.
For instance, the faster he walks the louder he vocalizes. Typically this comes out as an “oooouuuuuuu” sound. This is accompanied by either hand wringing or flapping rapidly to match his pace. As you might imagine, we have encountered stares and chuckles from the other patrons of our local rec center.
I am long accustomed to this kind of thing. Most of the time, unless we are REALLY disrupting others, I quietly cue Noah to be conscious of his behaviors and then let them go. Because the truth of the matter is, he can’t help it. Noah cannot be “un-autistic” for even one moment. And while he is processing a new skill, it is completely unfair to ask him to monitor himself even more than he usually does for the comfort of the people around us. I figured, “We paid our dues like everyone else here. We are fighting for his health here. If he has got to flap, then he can flap and ‘ooooooouuuuu’ all he needs to. I refuse to be ashamed.”
Today, I took my place directly behind him, as usual, on an elliptical trainer. I can monitor his movements there, as well as the behaviors of the other patrons of the gym. He was doing his thing, warming up at about 3.0 and then speeding up to a slow jog when the vocalizations started. It was fairly crowded this morning and I immediately saw people begin to stare.
And then, we were the recipients of amazing grace.
One older gentleman was watching a little closer than the rest. I noticed him get up from his position on the exercise bike and begin talking to the people around him. He was smiling and gently nodding in Noah’s direction. Each person he talked to smiled in return and nodded their heads. After he had talked to every person in the exercise room, he made his way in my direction. Taking my ear buds out, I readied myself to give our standard Autism 101 explanation.
With a smile he approached the elliptical trainer I was killing myself upon and said, “I’ve noticed your boy.” Before I could launch into my 3-minute spiel, he continued
He seems like a good boy. I could hear him making some sounds and turning his wrists about. It made me smile because I’ve got a seventeen-year-old grandson just like him. Autism has been a gift for our family. But I know it’s hard too. I hope you don’t mind that I took the liberty of letting everyone here know what a good job he was doing despite his limitations.
He went on to tell me that he understood how exhausting it was to be a caregiver. He explained that he had just recently lost his wife of 52 years to Alzheimer’s and that he could sympathize with constantly feeling the burden of explaining behaviors that seemed odd to the world. When I shared about Noah’s health concerns and why we are making such an effort to be at the gym, he told me that I was an “outstanding mother.” Then he asked permission to talk to Noah. When he did, he clipped the emergency strap to Noah’s shirt and patted him on the hand with a smile.
It has been over 10 years since our diagnosis and I’ve never had someone intervene on our behalf like this. It’s only been a few hours and I’m beginning to wonder if he was just an angel or apparition caused by elliptical-trainer-exhaustion. But it is possible that he was just being kind and extending grace where he saw need. Operating out of a small amount of knowledge about autism and his own experience as a caregiver, he opened his heart to dispense a few kind words on behalf of Noah and I. It was a small thing – but not to us.
And this tired Mom, who doesn’t have nearly all of the answers that she needs, will be eternally grateful.
A post a wrote a few years ago about Noah’s view on a holiday classic…enjoy!
I’ve been doing “research” for a talk I’m giving next month. It’s a holiday gathering so the theme is preset, and I’ve got a pretty good idea where I’m going with it but I still like to research thoroughly. In doing my research, Noah and I have been watching some of the classic holiday movies. Watching a movie with Noah can be a strenuous experience. You have to be prepared for a lot of stopping and rewinding so that he can memorize a line in order to quote it perfectly 2 months later. As far as Noah is concerned, on the 8th day God made TiVo.
We were watching Rudolph the Red Nosed Reindeer. As we began Noah had several comments to make about how the characters looked, or how much he loves Christmas and how excited he is that “its almost here”. But his comments about Rudolph gave me cause to muse. It wasn’t very far into the plot before Noah grabbed the remote and, instead of rewinding, paused the dvd and said, “Now that is my favorite character – Hermie the Elf.”
I replied, “What do you like about Hermie so much?” Noah answered, “Well, we both have kind of yellow hair and also, Hermie is happy and sad at the same time.” When I asked how it is possible to be happy and sad at the same time, Noah said, “Well, you see Mom, he is a misfit. He is happy because he wants to be a dentist, but sad because no one understands him. So he is happy and sad at the same time.” Not passing up on a “Noah moment” I asked, “Are you happy and sad at the same time?” Noah answered, “Yes I am, it just depends on how I open my eyes.” While I pondered the weirdness of that statement, he began the video again.
Soon, Rudolph and Hermie have teamed up and run away in an effort to “be independent together”. They jump on an iceberg and head out for points unknown and arrive at The Island of Misfit Toys. At this point, Noah stops the video again and says, “Mom pay attention, this is the important part.” (At this point, I also grabbed my laptop.) They are greeted first by the sentry who appears to be a Jack-in-the-Box, but informs them that he is actually a Charlie-in-the-Box. This is why he is a misfit – because, “…no child wants to play with a Charlie-in-the-Box.” Soon many other toys that have peculiar traits greet them.
“How would you like to be a spotted elephant, or a Choo-Choo with square wheels on its caboose, or a bird that can’t fly but swims?” they are asked by the toys. When Hermie and Rudolph inquire how they got to the island they answer that the king of the island, King Moonraiser, searches for toys that no one wants and brings them to live on the island until someone wants them. Noah turns to me and says, “See, the king has open eyes.”
Now its quite possible that Noah was just discussing the finer points of 1964 made for tv animation, but somehow I don’t think so. You see, it’s a story of Hope. Advent is a season of preparation for the coming of Christ and a part of that larger story is Hope. In fact, it is woven all the way through scripture. In this story, the toys on the island have cause for Hope because they have a King that sought them out when no one else wanted them. And more than that, he provides for them a safe place of respite until they are wanted again. Please don’t miss the point – the King searched for them. This is the best part of the Hope: because the King had ‘open eyes’ no toy – no matter how big a misfit – went unredeemed. All toys are of value to the King, no matter how broken.
Noah changed the direction of my research. He indicated we can be happy or sad about who we are, it just depends on how we “open” our eyes. I rolled that over again and again in my brain all evening. I finally gave up around 4am and grabbed my Bible and began reading. Here are a few passages I was led to:
For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to him.
2 Chronicles 16:9
I praise God for the Hope I can find because I have a King that came looking for me. Unwilling to allow me to remain a misplaced, misfit – he is redeeming the parts of me that he can work with and discarding the parts that he can’t. I’ve got Hope.
Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Hebrews 12:2
I thank God for the Hope of the season that comes in the form of a source on which to fix my eyes. I’m a misfit, but he isn’t done with me yet. I am actually beginning to suspect that we misfits might be his favorites. Maybe it’s easier to show us how to direct our gaze. After all, it’s all in how we choose to open or focus our eyes. I’ve got Hope.
So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Cor. 4:18
I thank God for embracing the misfits and then using us in a wonderful way to show his glory. We have a marvelous Hope because we open our eyes to the eternal and not only the temporal. We’ve got Hope.
To all the misfit toys out there, Noah says there is Hope for us yet…it just depends on how we open our eyes.
In preparing to write a new series about acceptance, I thought I’d repost this selection from my previous blog. It was written 2 years ago this Spring…
Noah and I went out to eat this week. It was really just something to break the monotony. Actually, we were a little down and I thought it might cheer us up. He loves to eat in restaurants, especially new ones. Yeah, I’ve got one of the only autistic people in the world who likes to travel to new places and do new things. So I figured it would be just the pick-me-up we needed to push through our week. He loves Chinese, mainly chicken wings and rice, so we tried a new place.
It had been a long day for us both. I was glad not to be cooking and just to spend some time talking to Noah. But he wasn’t even close to being in a conversational frame of mind. I could tell he was tired because he was flapping with one hand and holding an object close to his face with the other. When he stims like this, it is a glaringly obvious sign that he is physically and neurologically over-taxed. I corrected him twice and he responded with his typical, “Sorry Mom. I’ll try harder.” After a few times of that I just thought, “Enough correcting him tonight…I’m tired too. Flap if ya gotta flap!”
It was a little early for the dinner crowd, so we had most of the dining room to ourselves at first. But just after we ordered our meal, a well-dressed couple was escorted to the table beside ours. Just as the lady sat down, Noah flapped. Then I heard it – a gasp-grunt. Out of the corner of my eye I saw her flag down the hostess. She said, purposefully loud enough for me to hear in an otherwise quiet dining room, “We can’t sit here. We’ll have to be moved.” My head spun around on my neck because I thought there must be a leak in the ceiling over her table or rat droppings or something to disturb her so. But when I turned around, and met her sneer, I realized that her problem was us. Noah continued to flap (this whole exchange lasted maybe 45 seconds) so he missed her subtle eye roll in my direction.
I felt like I had been slapped hard across the face. Now, I’m not completely unaware when we are attracting attention to ourselves. I work pretty hard at making Noah aware of his behaviors and try teaching him to curtail the completely unacceptable things he might be prone to do. So I can honestly say that, as disturbing behaviors go, I’ve seen lots of “normal” kids behave worse in a restaurant. But this wasn’t about being around children in general, because they were sat by a family of 4 in the far corner of the room. No, it was about our “differentness.”
This has happened before. But it was a long time ago. I had forgotten the painful sting this brand of rejection leaves. Honestly, I could barely breathe. The waitress, who had seen the whole thing unfold, was quietly sympathetic. She spoke kinder than was necessary to Noah. He, of course, returned her kindness with over-the-top manners he must’ve picked up from watching re-runs of Father Knows Best. He said things like, “thank you for being so sweet to us” and “I hope you aren’t tired after work tonight” and “aren’t you kind.” The more he tried to show thanks for simple kindness, the more sick to my stomach I became. When I knew she would watch him while I went to the restroom, I quietly excused myself. Once safely in a stall, I cried my eyes out. After washing my face in frigid water to get the swelling down, I returned to the table.
Just when I thought the worst was over, I felt someone else staring. From over the top of the partition, I saw the hostess catching a peek. As if on cue, Noah began flapping again. I sighed and put my head in my hands. When I looked up, I saw the hostess escorting another couple to the other side of the restaurant. It was now the dinner rush. I watched family after family come in only to be seated as far as possible from Noah and I. We had been quarantined.
At some point Noah noticed because he glanced around and said with a grin, “Well, I guess it’s just us huh? Kind of romantic.” I smiled a watery smile and choked down a bite of dinner. Its funny how even the moistest of food can turn to sawdust in your mouth. But then Noah began to tune into the worst thing he possibly could have – me. He read my distress and responded with, “Mom, I love you.” I answered that I loved him too. More than anything. No less than ten times during our meal, Noah told me that he loved me – more than anything.
At this point, you may be wondering why I collapsed instead of responding in my usual snarky flesh. All I can say is: Sometimes, even the feistiest of us loose our snark under the strain. It did occur to me later that I could’ve hollered across the room to the first woman, “Hey lady! Did that lump you came in here with tell you he loved you during dinner? Because this kid that wasn’t good enough for you told me about ten times!” I thought of TONS of horrible things I could have said. Luckily, I was just too beaten down to come up with them at the time. But then I had a thought that I’ve been prompted to consider through some reading and preaching I’ve been listening to.
What would Jesus have done? Not WWJD – “What would Jesus Do?” But, what would Jesus have done if he were me living my life in that very moment. The process of trying to picture Jesus as the parent of an autistic child proved too much for me that night. But I did wonder this: What would Jesus have done if he had just happened into that restaurant that very night and seen everything unfold? Believe me, I was praying desperately to feel him at that table. The rejection was so, well, violent.
Normally we think of violence as a physical act of aggression. But I think I experienced a subtler and deadly form of violence, and perhaps one more common than even physical aggression. We were simply rejected precisely for who we are. There was no second chance at redemption. We weren’t offered an opportunity to explain our exceptionality. We were just cut off and discarded as broken beyond repair. We were an embarrassment. Our awkwardness and inelegance brought shame and isolation. We were invisible.
We were each story of every marginalized creature Jesus came upon during his ministry. We were ostracized and in need of inclusion. We were diseased and in need of healing. We were unclean and in need of justification and cleansing in order to be made whole again. And we aren’t the only ones.
As alienated as I felt that night, and for several days afterward, Noah and I are not alone. More and more frequently, I am becoming alert to hurting and broken people. Often we are tempted to think that people are experiencing a reality they had complete responsibility for creating. Often times, as with us, that is not simply the case. Just as even the most sinister of objectives have unpredictable conclusions, the most innocent of best intentions can be catastrophic. There is not always a simple answer for suffering. And even if it appears there is a simple answer, the root causes for some issues are too complex to explain away in an attempt to systemize pain and suffering. I’ve noticed when we work so very hard to explain affliction and distress that we are doing so in an effort to exclude ourselves from a possibility of such tortures in our own experience. In other words, if I can explain how that person got into his or her situation I can keep myself from suffering similarly.
But we are missing the point.
I don’t think we need to explain it away. I don’t think we are ever called to figure it out. As a matter of fact, I believe we’ve been called to act in light of the fact that we cannot comprehend it. I don’t think love takes the time to evaluate suffering that way. Love simply acts in the face of the uncertainty. Love moves in the midst of the mess. Christ’s kingdom on earth wasn’t meant to assess every risk and liability associated with agape love. If that were the case, no one would take a risk on Noah and I because we don’t look that good on paper. No, kingdom doesn’t work that way. It isn’t logical. Very often it is counter-intuitive. It runs toward instead of away. It embraces instead of alienating. It takes on the suffering of the world.
Where was Jesus in the Chinese restaurant? He was a young waitress who appeared to be about 5 months pregnant and was waiting tables. Her eyes were tired and she looked dead on her feet. I’m sure she didn’t understand the complexity of Noah’s neuro-diversity. She probably didn’t have a certification in Autism Spectrum Disorders. In all honesty, I think she was probably a college drop out. But she didn’t seem to feel the need to place us on the continuum of acceptable risk. Instead, she was kind. And it didn’t cost her a thing.
I ended up bringing most of my dinner home. I even packed up the fortune cookies because I just couldn’t stay in that room one more second. A few days later Noah pulled his off the counter and opened it. It read: “You will influence many people with your words and travel far.” Ironic, but no less so than mine which read: “You are cherished.” Neither fortune seemed appropriate that night because I forgot that kingdom is often found in the small, least likely of places – like the face of a waitress who wasn’t too tired to be kind to a child who appeared to be retarded on the surface but could meet kindness with kindness. And in the words of that same child as he comforted his mother with the words: Mom, I love you more than anything.
Maybe our fortunes weren’t so wrong after all.