Christmas Eve has always been almost as hallowed as Christmas morning. It has been our family’s custom to celebrate the advent of Christ this night at a Candlelight Communion Service. It is the moment of the entire holiday season that I treasure the most. Amidst the insanity created around being thankful and the celebration of Jesus’ birth, these few moments are especially sacred.
Well, they were sacred until autism came to live in my house. Because this is a family event, no one expects complete silence – even during “Silent Night”. However, the fits and challenges of living on “the spectrum” dropped like a bomb on our “O Little Town of Bethlehem”.
When first negotiating our event calendar after the diagnosis, I became practiced at carefully planning our sensory diet in order to participate in “real life” as much as possible. Even though it was necessary to forego many activities that “normal families” share, the Candlelight Service was non-negotiable. I even surmised that the low lighting would, in fact, contribute to our success since it eliminated a source of sensory input. That was before I learned about all the hidden senses and how this event would trigger them in bizarre ways.
As sacred an occasion as it was, as a staff member at the church, Christmas Eve was a work night for me. My portion of the service was limited to the reading of a passage of scripture, but this would still necessitate that I leave Noah’s side for a portion of the evening. However, I took extra precautions to insure our success. I planned for my family to sit in the balcony (closed to the rest of the public) so that we could be isolated. I took Noah through the event, by walking him – literally - through the Sanctuary and explaining everything that would happen. I planned for him to have his favorite quiet manipulatives to play with and something to chew on. Then I used one of the most time-honored tools a parent can use – motivation (I prefer this term over the vulgar “bribery”). I allowed him to pick one gift from under the tree and told him that if he could hold it together, he could open it in the car on the way home from church. His four year old eyes lit up and he was ready for the challenge.
Dressed in our best non-itchy clothes, we prepared for a contemplative evening. Noah was ready and excited. At this point in this development, many will remember his repetitive phrase was “I want to be a good boy.” Over and over and over again, I would hear “I want to be a good boy. I want to be a good boy.” And no matter how many times I reassured him that no matter what he did, he was a “good boy”, Noah would repeat his mantra. I still remember that as he sat down on the church pew and swung his little legs over the side he was chanting “I want to be a good boy”. I think it was just he way of psyching himself up for what he knew was coming, but it still cut at my heart to hear him expect so much from himself.
It was looking hopeful until the organist began playing. It was then that I met sheer terror in the eyes of my son. Quickly, I assessed that not only was the organ louder in the balcony, but that we could actually feel the vibrations in our body from here. It was as if the music was inside us and we had no control on the volume. But I was prepared – I reached into our bag and found the preemptive bag of Goldfish crackers I had brought along. He took the silicone sensory tubing we carried with us everywhere out of his mouth and happily replaced it with a cracker. Pieces of Goldfish fell out, however, as he murmured “I want to be a good boy.”
Then I noticed the slight smell that the candelabras were creating. I also noted that every other person in the room had on red and while it was beautiful, it was also a riot of color from our perspective. Noticing more and more pieces of this puzzle, I gently took Noah’s shoes off. I could already tell they were on his mind and that we would need to manage some of this stimulation soon. I went to read my passage and when I got back he was rolling around under the pew. Now, I didn’t really care as long as he was contented, but it was the rigorous flapping at his wrists that let me know this was just the calm before the storm.
As the music swelled, so did our potential to come completely off the chain. Three songs in, Noah was chewing on his candle. Honestly, I remember thinking: When I was unwrapping those candles were there any warnings about ingesting any part of them because if not, I don’t care if he eats the whole thing. I’ll spring for an extra candle at this point if this will just be over soon. It was during the devotional that I could sense we were not going to make it through this experience. I knew the timeline of the service and thought if I could just help him make it through a few more moments he would have something to be proud of. He could call himself a “good boy”. But I tried a moment too long.
I was able to cover his mouth with my hand before the wailing began. As he just about beat me black and blue with full armed flapping, I wrapped him in a bear hug and out the balcony doors we went. There is a small communion table in the balcony foyer with an oil painting of Jesus hanging over it. I rushed him to the table and sat him on it to try and comfort him eye to eye as best I could. I was in tears, not because of embarrassment or because we hadn’t been successful but because I knew what was coming: a litany of “I-want-to-be-a-good-boy” that would break my heart. Instead, when he got his breath he turned his tearful face to the wall behind him. Gazing up at that portrait I heard my little boy say, “I’m so sorry Jesus. I wanted to be good.”
Looking back, I am amazed that Noah had the capabilities then to internalize the feelings of an “abstract” authority figure. But in that moment, it burst a dam of emotions within me and I began to sob. With rare indulgence he allowed me to hold him and tell him over and over again, “Baby, Jesus is not mad at you.” He wasn’t afraid that he had disappointed me, but he knew this night was about something bigger than he and just wanted to be a part of it through obedience. He was hoping his goodness would allow him full participation in grace and favor. And when his goodness was not enough and he had reached the end of his personal resources, he was very, very sorry.
I have recently been in similar straights. I have had the need to sit at the feet of Jesus and say, “I’m so sorry. I don’t know how I got here, Lord, but I am so sorry.” I am feeling particularly in need of grace and favor. Much like my boy, I want do desperately to be good. I chase God with a relentless drive and determination that can be frustrating for those around me. My love and pursuit of the knowledge of God has ostracized me from more than one friend. My obsession with him makes me difficult to understand and synthesize the world around me on occasion. I’m not a lot of fun at parties. So how is it that someone who rushes after God so passionately can miss the mark so badly?
I am desperate to feel his arms tightly holding my flailing ones. I wish I could actually feel his loving restraint as he tells me the truth about who I am and how hard I strive and try and fail. I don’t know what he would say to me, but I wonder if he’d tell me the same thing I told Noah – “Baby, I am not mad at you.”
If you’ve ever been at the end of your personal resources because you haven’t been able to be good enough, maybe you understand what I am feeling. The good news is, even though I am working hard to convince myself of this now, Jesus is not mad at us. Our own goodness and personal resources were never going to be enough in the first place. There was no way we were getting through this experience without relying on him. All the chew toys and Goldfish (or those more things we adults use to comfort us in an attempt to adapt to our circumstances) were not going to make our goodness more effective. Sometimes, we just fail.
But we are a part of something much greater than ourselves and as such have resources available that extend beyond our own. Today I am going to try to rely on his goodness. I want to rest in his grace. I am striving not to be good enough on my own, but to trust in his favor and love. Trying to be “good” enough results in nothing but being “sorry”. When I operate under these conditions all I am is “good and sorry”.
Reflecting on Noah’s way of negotiating the ethical implications of his own personal failure has made me see myself through similar eyes. Once again, autism has given more than it has taken away.