Wednesday, October 27, 2010

The Autism Gospel - On Being "Good" & "Sorry"

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.

Saturday, October 23, 2010

The Autism Gospel - A Hand and Foot

He was so excited that he laid out his clothes 3 days ago for this morning’s outing. That’s the thing about living on the spectrum – we like to plan in advance. Actually, we’re lucky today even happened because we almost didn’t get to do the big event. If it hadn’t been for the extra work of two precious men who choose to see beyond our restricted vocabulary and arm flapping, I’d probably be managing a major meltdown this morning due to “change of plans”. I hate it when we change our plans. It leaves me feeling like I’ve been hit by a bus.

The countdown started on Thursday night: “only two more sleeps (as in a night’s sleep in Noah language) until the best day ever”. Then on Friday morning: “I can’t wait until tomorrow. It’s gonna be the best time ever.” So with our favorite shirt, our most comfortable shoes and Winnie the Pooh we head out into our adventure.

Now some of you must be thinking that I took Noah to a carnival or fair. Surely, only something to rival Disney World could command this much planning and preparation? Maybe we went to see a movie at his favorite theatre and then stopped to carb load on the way home? Nope. Today we got to deliver food to the Lawrenceville Food Co-Op. Yep, that’s what all the excitement was about. Let me further explain…

As I cited in my last post, Noah has become obsessed about the food ministry at church. He “helps” take donations each Sunday morning by greeting church members ever so warmly at the door with “hey…where’s YOUR canned fruit?” (Mental Note: screen for autism among the greeters at your church…I’m just sayin’) Each week he helps stack and count the contributions. He has also been part of the decision making process for each week’s featured donation item. I imagine in some way this has helped him order his environment at church. But, oh, if only this perservation was restricted to the church building. In addition to shopping on Sunday afternoon – that’s right, the WORST time of the week to grocery shop and thereby, loose your anointing – for this week’s item, Noah has solicited donations from family members and friends. He just cannot understand why everyone has not caught on to this exciting phenomenon.

So this morning, we visited the Food Co-Op and delivered donations. One of those sweet men who’ve so kindly adopted Noah called the ministry ahead and told them about Noah. The director of the Co-Op was so happy to hear of his interest (that’s a mild way of putting it I think) that she made plans to give Noah a personal tour of the facility. My only prayer was that we would not make a bigger public spectacle of ourselves than we usually do – on a scale of 1 to 10 (10 being “wow, did you just see what they did”) we typically average out at a 7.

We couldn’t even get in the parking lot of this modest church in Lawrenceville. Mike had warned me that it would probably be crowded and noisy on a Saturday morning. Noah had actually asked me on the ride up, “So mom, what exactly will this be like?” It has probably only been in the last year and a half that I ever dare take Noah anyplace I have not scouted out previously. I would always have to report how it smelled, the noise level, and lighting conditions to him before we ventured anyplace new. Well, this morning I couldn’t do that so I answered, “Well, Buddy. I’ve got no idea.” His response was typical Noah: “Well, this will be something to remember then, huh Mom?” My first thought was, “dear God I hope not”.

After Noah helped Mike carry in about 10 bags of groceries (the heavy work was very good occupational therapy before the noise, sights and smells…thanks for that Lord – wouldn’t have though of it), Noah was greeted by the director. He couldn’t make eye contact, but offered her a very flappy hand shake. She was warm and wonderful and put Noah at ease immediately. It is obvious that she is practiced at (and has perhaps perfected) the art of restoring dignity to the broken. So she began to take Noah through the building. She explained the in-take process and when he loudly asked, “hey, who are these people?” she calmly explained that they were waiting to go back and get their food. She even took Noah through the offices there and showed him her filing system and explained how they manage helping so many people. He insisted, of course, checking the S file cabinet to see if we had a file. She was un-phased by his questions and requests. She introduced Noah to everyone as if he were a celebrity. Noah dutifully gave each volunteer the same view of the top of his head, and flappy hand shake. No one seemed to think anything of it. At one point I heard her gently explaining to Noah that giving is a way we can be “the hands and feet of Jesus for people who need his help”.

Noah said very little, but was his usual stealthily observant self. I allowed him to bring the camera so that he could take pictures. I thought maybe it would quench some of his interest, truth be told. When we got back to the rows of food, I could see him mentally inventorying the shelves. I allowed him the camera and he began snapping away. I was dismayed to find him reading the labels on the empty shelves. Sure enough, later in the car he was able to tell me everything they were out of. His biggest excitement was seeing a table set aside for baby food and formula.

I waited until the ride home to ask Noah what he thought. He typically speaks better when we are in the car and I’m driving – always has. I think it is the combination of not needing to process my facial expressions and read my social cues during a conversation and the stimulation from a moving vehicle that helps him communicate better in this way. Here is what Noah said:

“I feel proud to be a hand and foot. It was a great day because Jesus helped people today. Babies won’t be hungry now. Oh, and mom…they are out of toilet paper.”

Mike had given him a list of the Co-Op’s Top Ten needs. Noah read them silently until we reached the interstate. Somehow I don’t think today quenched Noah’s desire and passion for the food ministry. Instead, we may have just created an all hands and feet monster that might go through your pantry should we stop by your home to see if you have any of the featured donation of the week.

Everybody lock up your toilet paper.

Sunday, October 3, 2010

The Autism Gospel of Green Beans & Samaritans

“Mom, don’t have hurt feelings, it’s just a growing up thing to do.”

This is how Noah started a heart-to-heart conversation with me about a month ago. I was terrified as to what would follow this declaration of independence, but encouraged him to continue. Not a fan of “small talk”, Noah got straight to the point. “Mom, I want to put myself to bed at night.” I tried not to emotionally respond to this newly found sense of autonomy but my heart cried out, “No! Not the bedtime routine!” (Sometimes I wonder who the autistic person around here is…maybe it’s contagious after all.) So without any emotional affect at all, I asked what this might entail. Just which parts of our routine was I to forego in the spirit of pre-adolescent development? To my surprise, his idea of putting himself to bed meant that Noah would say his prayers himself.

Now I should say that when we first received our diagnosis one of the most bone chilling prospects of 299.0 was the “lack of social or emotional reciprocity”. What was that going to mean for Noah? Would he be capable of a conscious or was he destined to become a serial killer? Many nights would find me bleary eyed cruising the internet for adaptive behavioral methods that might be the cure for our curse. My biggest fear was what this would mean for Noah’s spiritual life. Without emotional reciprocity, could he ever respond to God as his Savior and forever friend? And he couldn’t even talk to me or conceive of me as a person when I was right in front of him. Could Noah ever conceive of a God who loved him enough to send his son to die for him? Would he be able to ever communicate with God?

To say these thoughts plagued me daily in our early years is the epitome understatement. I methodically tried different approaches to break through to a place where I could access Noah’s soul. My only solution to the prayer problem was to make a small photo album with pictures of those for whom we could pray. Using photos from Christmas cards, I used this book each night to hopefully convey to Noah that praying included talking to God about other people. While it has been a long time since I’ve needed to use the book to break through to Noah, I have still often wondered at night: Does he even listen to the words I pray or is this just part of the routine to him? Like the parent of any “normal child”, I have wondered if my child would internalize his faith.

While I am sometimes tempted to feel that autism has robbed me of certain liberties as a parent, I am constantly reminded that it has given me far more than it ever took away. While I don’t even pretend to have this disorder “by the tail”, I can say that I’ve found there is much more happening than often appears on the surface with an autistic individual. Whereas before I might have deduced from certain behaviors that my son lacked emotional reciprocity, I now see that I believe Noah has been gifted with heightened senses. I can only speak for “our case”, but I know that Noah feels and sees things that elude those unfortunate enough to be normal. Here is how I know…

Our church supports a local food co-op to provide for families in need. We’ve participated before by bringing in assorted canned goods and allowing Noah to place them in the grocery cart located in the foyer. However, last Sunday’s emphasis was on green beans. Somehow, Noah really caught on to this specific idea. All week long he inundated me with reminders that we had to get green beans for the “hungry people”. And when I say that Noah reminded me, I mean SEVERAL times a day because when we focus on something we REALLY focus on it.

So on Saturday when we did our grocery shopping I patiently waited while Noah picked out just the right can of green beans – which turned out to be a 4-pack but this is for the Kingdom right? He placed them in the buggy and checked on them several times as we continued to shop. When we got to the check out, Noah dug them out from under the rest of the groceries so that they would be checked out first. I grimaced as his arms flapped when they “beeped” over the scanner. Then I promptly forgot about the green beans. That “to do” had been checked off my mental list.

Last Saturday evening, I stood at the door listening to Noah’s prayers. Even though it’s a “growing up thing to do” Noah still prays aloud with his hands clasped to his chest. I heard him say, “And dear God, please don’t let me forget the green beans! Don’t’ let me forget the hungry people.” My mouth went dry. I swear that I believe the salvia was immediately redirected into tears because I instantly wept.

Dear Lord, please don’t let me forget the green beans and the hungry people. When was the last time I prayed with the sincere spirit to remember and not forget?

It was then that I remembered Noah has also been fixated on the story of The Good Samaritan – or as he calls it “The Story of the Guy on the Road”. I find it interesting that Noah doesn’t identify with the hero, but with the wounded. I’ve acted out this story dozens of times in Sunday School lessons. No one really wants to be “the guy on the road”. It’s the Samaritan that is the hero. We even make a big deal about how marginalized the people of Samaria were and how extraordinary it was for Jesus to choose this unlikely hero. But Noah never seems to get past the image of the wounded man. It seems Noah has a heightened awareness for those in pain and need. I don’t have to wonder why.

I can still see Noah laying under the table in most of the Sunday School classes he attended as the rest of the class sat obediently around the story circle. My wounded little boy would stay on the fringes of his own society, paralyzed by his own brain for many years. I wonder if when Noah sees the picture of the man prostrate on the road, some part of him doesn’t transport his mind’s eye to the perspective of laying on the ground himself. I believe that even though we could not see it at the time, Noah was desperate for someone to come along and be his Samaritan. And many teachers did just that. In this way, he identifies with the wounded and passed by in a way most of us cannot.

What I find difficult to grasp is Noah’s desperate plea not to forget those in pain. Having experienced so much pain himself, why would he want to remember more? Well for Noah, I guess he can still see from the perspective on someone on the road. And contrary to all logic, Noah prays to remember and not forget. He prays not to forget the pain and suffering with which he identifies. In his own way, he is willing to relive that scenario in his memory in order to keep his perspective. Most of us spend our energies avoiding personal suffering or, at the very least, trying to put it behind us so that we can “go on”. But Noah asks to remember.

I hope that one day, I can grow to a place where I can ask God to help me remember my pain and not forget it in order to benefit someone along the road. Until then, I will remain inspired by green beans and Samaritans.

Today is “Tuna Fish Sunday”. Our cans are packed and in front of the door so that we’ll have to trip over them to forget. But I have a feeling that Noah won’t let me forget...