Wednesday, June 30, 2010

The Autism Gospel - Making a Difference

When Noah was about 5 and still pretty non-verbal for the most part, I had one of my first revelations that there was more there in Noah than it often seemed. The previous year at school had been hell. By October they were telling me that Noah was, quite probably "unable of cognitive thought and reason". In November, they came to me with a catalog for straight jackets and helmets and announced that they were in favor of moving him to the "behavioral unit" because he was unable to learn. They told me he was functionally retarded.

Now a lot of people who look back on this say, "I always knew Noah would be alright." Well, that must've been nice because I didn't. In my heart of hearts I didn't know if he'd be okay or not. But I fought anyway. After contracting a TON of work with Standard that winter, I hired an educational consultant (to the tune of $115 per hour) and had a $700 IEP meeting to get him out of that particular school and into a special ed kindergarten. Just as I was breathing a sigh of relief, VBS rolls around.

The theme I'd been pimping myself out to ALL WINTER LONG was "Trading Places - Make a Difference with Jesus". I'd preached it in 6 states. By the time it actually got here I was on auto-pilot most of the week. I did my song and dance, led worship at least 3 sets a day, and taught a couple of lessons all about how we can "make a difference" with Jesus. But, there was Noah to deal with...

He had absolutely no tolerance for all things associated with VBS. He hated the music, the assembly, his class, the crafts, the t-shirt - all of it. I remember thinking, "if you knew me preaching this stuff for the last 6 months had saved your scrawny butt you'd like it..." Somehow we got through the week. Then it was VBS Sunday. Now, if I do say so myself, nobody can plan and execute a children's worship like I can. I am a PRO-fessional. I had it all planned out. I had skillfully picked 6 songs, taught the kids 5 verses (all with hand motions) and each group of kids had something special to do, say, sing or recite. It was going to rock it. And to be sure not to leave the little people out, the preschool had 2 songs to sing. This is where it hit the fan.

There songs were very simple. I know how to select the best music for each age. Their songs were uber-repetitive and had the cute factor too. Those kids could've peed on the walls of the sanctuary. but as long as they were singing those songs people would eat them up. The problem was, you guessed it, Noah.

I knew he hated worship, so I wasn't going to press it. If he didn't want to wear his shirt, I was going to let it go. If he didn't want to sing, no big deal. I figured he could sit in the Nursery or under the sound board with Duane. That morning he put on his shirt (I probably promised him it was the last time he'd ever have to wear it), and I timidly asked if he was going to sing with us in "big church" that morning. He didn't make eye contact, but nodded "yes". Trying to hide my shock and joy I said, "Noah that's great you get to sing 'I've Got Joy' and the VBS theme song. You'll do so good and then you can go have goldfish and juice." It was at this moment that things turned ugly.

He turned on his heel and said, quite clearly I might add, "No. I sing "Make A Difference in Me". I couldn't even figure out how he knew the name of that song since he'd been refusing to come to worship all week but, trust me, that was NOT his song. That particular song was beautiful but had been the most difficult song I'd ever taught children. It was wordy (beautiful but wordy) and had American Sign Language that did all kinds of developmentally inappropriate things. Hell, half the adults I had in VBS couldn't pull that song off. Plus, it was the sweet, slow song and I had it saved out for the last thing before Communion. That way the kids were wound down and the energy of the service became focused on Christ. It was masterfully done...seriously.

So, I respond to Noah's declaration with: "Oh sweetie, no. You sing the first two songs and that is all." Noah's juice cup hit the kitchen floor as he said, more loudly this time: I SING MAKE A DIFFERENCE IN ME. To which I replied, "No you don't." This went on for more than a few moments as I tried to clear up this communication glitch we were having. Soon half and hour had passed. By this time Noah's arms were folded and so were mine and it was a stand off. In the back of my mind I thought, "I'll show you. I'll park your little fanny in the Nursery and you'll miss the whole show but you are NOT screwing with MY worship little buddy! This is going to function beautifully to show the church as a whole that we are converting from the childcare model to the children's ministry model and you will not throw down in the sanctuary today!"

We weren't speaking to one another as my husband Duane drove us to church.

I hastily explained to a friend my problem with Noah and she said he hated crowds so much she really didn't think he'd even go in the sanctuary but not to worry because she was "on it". With a deep sigh of relief I went ahead and readied the children to dazzle the church. Everything was in place early and I got to feeling guilty for not speaking to Noah so I went down to the preschool hall to patch things up. He was glad to see me and I asked him again if he was going to sing, he said, "Yes. I sing Make A Difference in Me." At this moment, something in me snapped and I actually said, "Holy cow! What is the deal with you and this stupid song? Why does it have to be this song? You don't know that song. That song is WAY to hard for you. Anyway, it is the very last song and there is NO WAY you can make it until the end. Trust me Noah, you can't do this. Just sing the first two songs and sit down for Christ's sake and mine too!"

He put down his juice cup and stared at me for half a moment and then his eyes filled full of tears. Before I could even feel bad he screamed, "Because Jesus make me different Mama. I broke - but Jesus make me different! I want be different Mama. Jesus make me different." And he began to weep giant tears.

I was completely devoid of speech or thought. The only thing that I could even conceive was: the most unlikely kid got it. I had just told him myself what I'd been fighting others for saying for months - that he wasn't able to learn the message. But Noah learned the message behind the message: not only that we can make a difference in the lives of people by giving them Jesus, but that by doing so, he makes a difference in ours. Noah had grasped the transforming love of Jesus Christ better than anyone had that week. He had become different because he believed in a man named Jesus.

I took his little hand in mine and we walked up the stairs with the rest of the preschool children. Their songs were first in the order of service and Noah dutifully stood there on the back row with his hands over his ears while they sang them. When the rest of the children went to have goldfish and juice, Noah sat quietly with my friend Kay. We sang the next 3 songs and I had the congregation convinced that these kids were the best thing since Jesus Christ, but I don't remember very much about it. All I remember is what happened next.

I handled the transition between the next-to-last song and "Make a Difference in Me" the way I had all week long. The usual "trash talk for Jesus" that brings everyone to a point of focus before the best part. The children stood on cue and as the first measures of music began to play the servers came forward to retrieve the trays. it was then that I saw a little blond head bob and weave it's way through the crowd. Noah quietly made his way to the front row of the choir loft and waited for the song to begin. Then in perfect American Sign Language far too developmentally advanced for his crippled little hands Noah signed:

Make a difference in me, make a world of difference,

from the inside out, let it show.

Make a difference in me,

make a world of difference. Change me so the world will know.

You are the potter, I am the clay. Mold me and make me:

this is what I pray.

Make a difference in me, make a world of difference,

from the inside out, let it show.

Make a difference in me,

make a world of difference. Change me so the world will know.

I signed along with the children but was unable to sing. As tears poured down my face and wet the collar of my well worn VBS t-shirt that read "Jesus Makes a World of Difference" I had my Damascus Road moment. I had missed the point for 6 months in 6 states. I wasn't making people different by sharing Jesus with them - he was making me different. He was changing me so the world could know him. And he was so gentle about it, he used a 5 year old autistic boy with his daddy's eyes and my grin. And that day, I began a journey of knowing what Hauerwas means when he says, "To be disabled is to be forced to have the time to recognize that Jesus is the inauguration of a new time constituted by prayer. To be disabled is to begin to understand what it means to be an infant vis-à-vis the kingdom brought by Jesus."

Sunday, June 27, 2010

The Autism Gospel - Learning to Speak

Not every child on the Autism Spectrum has the same difficulty with language. For this reason, the saying goes, “when you’ve met one autistic child, you’ve met ONE autistic child”. My child happened to have various forms of language difficulty. For instance, not only did Noah have dyspraxia which affected his tongue muscle and made speech a practical impossibility, he also had neurological processing issues that inhibited his ability to access the parts of his brain which control language and communication.

So when my friend’s children were babbling and cooing, Noah remained silent. This, coupled with his lack of eye contact, helped Noah present himself as one of the most stoic and solemn little people you’d ever meet. Our home was notoriously quiet. I remember my friends commenting on how well behaved Noah must be because when we were on the phone they never heard him. Of course, the reason they never heard him was because he never made any noise. Ever.

He would watch television and play with toys and listen to quiet music. Often he’d sit and listen to my niece and I (who hasn’t quit talking since she started) carry on a conversation. But it took Noah a long time to make that initial contact with anyone through language. One of the first things he would do is bring me his sippy cup and stare at my feet. I’d say, “Noah, would you like some more juice? Can you say ‘Juice please?’” In return, all I could get was a glimpse of the top of that beautiful blond head. Because he couldn’t nod or gesture or point, this is was what communicating with Noah was like for the first three years of his life.

Despite the desperate moments when he’d become so frustrated that he’d lock away inside himself, I don’t regret this time of Noah’s development. I always viewed it as a period of unique growth that Noah needed. It was as if he was taking in the world and deciding how to process it before he even tried to vocalize his place in it. I respected that. I still admire the quiet observer in him. It seems to serve him well.

It is this kind of “in-between” place that I find myself right now. I am between worlds, so to speak – no pun intended. I am between lives, jobs and destinies. So much like Noah, I am learning to take it all in and observe quietly.

So many of you have asked me, “Why quit your job now that you have a degree in it?” “What in the world are you going to do with a seminary degree?” “Do you ever think anyone else will hire you at a church?” There are a variety of answers to these questions, some short and some longer. But mostly I am just having an “autistic season” I guess.

I am, in some ways, locked away within myself during this season. I am coming to see it as a blessing from The Giver of all good things. Instead of being in the middle of the fray, I am quietly observing from a distance. Whereas before, I was writing, saying, singing or teaching all the right words, now I am simply listening.

In this time of listening, I am asking God to teach me, again, to speak. Not my old language, but one that is new. As a fallen being (a little more fallen than most some would say), I am ill equipped to speak of his majesty and greatness the way I’d like to be. I doubt it will ever be possible to achieve the verbal ability to disclose his greatness with any accuracy. Often I feel like Noah in that my tongue seems dyspraxic in its ability to speak with the words I’d like to use. I also feel that I can’t access the appropriate parts of my brain necessary to capture the ways I’d like to communicate his redeeming work for our world. His idea of Kingdom is so vast and beautiful that I am simply learning to hear it. So I’m listening and waiting to learn how to speak.

I am praying for the chance to learn the new language of this great love that surpasses reason. I don’t believe for a moment that I’ll ever be able to fully understand it, but I’d like to be able to speak about it a little more fluently. I hope to be taught by the Master how to access the parts of my brain and, more importantly, my heart that will allow me to minister to the hurting, the disenfranchised and the marginalized of society. Somehow during my journey this far, I neglected the opportunity to hear this language and I surely don’t know how to speak it.

I pray the Lord will be patient and extend his loving-kindness to me as I redevelop this piece of myself. When Noah was in this stage of learning, he was very restrictive about the people with whom he would attempt to communicate. I had the opportunity to serve as Noah’s primary translator to the world. With just one shrug of his shoulders or, if I was lucky, glance of those sweet blue eyes, he would reveal to me his need and I would then attempt to draw it from our world into his. It sounds tedious, and I suppose some days were longer and more difficult than others. But I will always remember this time as a gift. Noah has showed me how to hear, listen, observe and learn.

I feel the tables have been turned during my current season of life. Mostly I spend my days in reading as much as I can about God. I think this will improve my fluency some, but I pray that I will be gifted to retain a portion of this knowledge. I, too, am finding the value of simply listening and observing. I pray a lot – for peace, for direction and for purpose. I pray that when I am ready, God will let me speak for him again someday.

We never thought Noah was really picking up on anything in those early days when he was on the fringes of our world. But he really was listening and processing the places in which he’d been placed. What we thought was a pervasive developmental delay was actually, in reflection, a form of wisdom. So I’m praying that I can take a page out of Noah’s book and immerse myself in this autistic season. Just as I kept an eye on Noah during this season of his autism, so also, I know that I am not alone.

“I am with you and will watch over you wherever you go…” Genesis 28:15

Speak Lord, for your servant is finally listening…

Saturday, June 26, 2010

The Autism Gospel of Non-Violent Resistance

This is actually an old note I wrote to a friend several months ago after borrowing some books. It was before I started my blog. It fits in nicely with The Autism Gospel so I thought I’d post it.

For about 3 weeks last summer my sister kept Noah during the day so that I could get my office hours done. For some reason, all of my sister's kids go through a mean stage around 4 years of age. (Seriously, it must be some genetic thing! I can hardly stand to be around them but they usually end up at "Camp GiGi" to get some Jesus and have it exorcized from their little hearts at some point during this year). My nephew turned 4 last March, so he was in the throes of his meanness last summer. Each day when I would pick Noah up he would be quiet but nothing really concerned me until the end of the first week.

I got out of the car and could hear my sister screaming at the top of her lungs from the pool in the backyard. "Do it Noah! I said do it!" I ran to the back wondering what on earth Noah had done to make my sister go over the edge and found her holding her son down and Noah cowering 5 feet away. When he saw me he immediately ran and threw himself into my legs and began hysterically weeping. Because language is hard for him, I just got him over the dry heaves and sent him into the house to get a cool drink of water. I asked my sister what happened and here is what she said:

"Grady (her little boy) has been mean as a snake all week long. He has been merciless to Noah. He has hit him and bit him and kicked him and yelled at him and made fun of him and I've had enough of it! So when he tried to drown Noah in the pool and was beating him up I wrestled Grady to the ground and told Noah to hit him back! Enough is enough! I must've confused Noah because he didn't know what to do. Explain to him that I am not mad at him, but that I am trying to help him take care of himself."

So I went into the house and it took me 10 minutes to find Noah. He was under my sister's bed weeping into the carpet. I couldn't get him out so I just laid there beside him until I could get him to the point where he could talk. I finally asked, "Grady has been pretty mean hasn't he?" Noah answered, "yes ma'am."

I reasoned, "Aunt Stephanie was trying to teach Grady a lesson. She was trying to help you defend yourself. She isn't mad at you. She just wanted to give you a chance to hit Grady back."

At this, Noah became completely hysterical again. Finally, I asked, "Noah what is wrong?" He said, "I can't."

I said, "Can't what baby? What can't you do?"

Noah cried, "I can't hit Grady. Please don't make me. I can't hit Grady!"

"Why baby? It's okay. Why can't you? You are 8 and he is only 4. You are so much bigger than he is? Why can't you hit him? Why do you let him beat you up?"

The next words would stop me in my tracks and become a matter of serious debate in my family for weeks.

"Because I love him," and Noah began to weep even harder.

The idea of striking Grady cut him to the core not because he was afraid of doing it, but because he loved him too much to retaliate. The debate that ensued is something that grieves me now. Had I read these books last summer, I could've stopped it. But instead, I just let the family carry on their debate which went something like this: "This is why Noah will always need someone to take care of him. Aren't you afraid of what kind of person he'll become when he grows up? He'll never make it. Poor Noah. Poor you. You'll be caring for Noah for the rest of your life. Autism has done this to him."

Autism has done this to him. Huh?

Autism cleared his neurologically deformed brain of pride long enough not to think of himself but of someone else. Autism convinced Noah not to consider his own injuries but to see the person who was injuring him as one in need of patience and compassion. Autism stopped him from perpetuating the cycle of violence. Autism caused him to love someone else more than himself. Autism made him more like Jesus. Maybe we need more autistic people in this world.

Strangely enough, Grady stopped being mean to Noah that day.

After all of this reading (I'm almost done and will get your books back to you soon:), I remembered this horrible day. When I picked Noah up on Friday of last week I asked him if he remembered that day. Tears sprang to his eyes and he said "Yes ma'am. I still love Grady but I want to be a good boy but please don't make me hit him." I pulled the car over and climbed into back seat. I held that neuro-diverse little person in my arms and told him that he was right and everyone else was wrong and that he had soon what Jesus would have wanted him to do.

I guess Jesus was neuro-diverse too.

Celebrate neuro-diversity...Vangie