Month: May 2013

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The Autism Gospel – The Making of a Member

Posted on by vangierodenbeck

My mind wanders in strange directions. Sometimes I see things happen and spend months trying to piece together exactly what it was about said situation that reveals the work of God. This series on Membership is the result of such wanderings.

 

Looking back from the end of this school year, I can say it has been our toughest ever. Noah’s schedule went something like this:

  • August: mom in hospital with kidney stones; start NEW school 3 days late
  • September: car accident with dad
  • October: strep throat (3 times) & mono
  • November: recovery from mono
  • December: onset of atypical migraine headaches which present with stroke-like symptoms; 8 days in hospital
  • January: realize that I am 4 months behind in my best subjects and 3 years behind in reading
  • February: be told that I will most likely repeat 5th grade…again

I’d say that I don’t know how Noah survived the school year because lets not forget that he did all of this with autism. But something happened early on during the year that set our course on a different trajectory. Seeing it now from the not so distant future, I think I can draw some conclusions about how one small thing made all the difference.

Noise is still Noah’s largest area of sensitivity. He can compensate for sudden noise or even crowd related noise now. But at the end of a taxing day, prolonged noise is very difficult. So I wasn’t surprised to get a call from the principal at Noah school just a few short weeks into school.

Noah had already commented on having difficulty remembering and hearing his car rider number. He had asked for me to make a special tag to attach to his backpack to help him focus on the number in the crowded cafeteria where 200 plus kids gathered for car line every afternoon. I knew he was having difficulty so I was ready for the call.

She began, “Well, Noah is having some difficulty with the car rider area each afternoon. It is quite loud. He is becoming increasingly anxious. We just don’t think it is going to be possible for him to continue in the cafeteria.” There were several possible solutions to this scenario. I was prepared for each one.

  1. She could have said: We think it would be best for you to pick Noah up early. While I wasn’t opposed to this, I did wonder how it might affect Noah’s ability to build up a threshold for noise. If he is never exposed to noise, he will never learn to use strategies to compensate.
  2. She could have said: We think it would serve Noah best if we kept him in a quiet room separated from the other car riders. While this would definitely lessen Noah’s anxiety, I was concerned about isolating him from peers. I was afraid this would further draw him apart from any possible peer group.
  3. She could have said: We believe it to be in Noah’s best interest if you put him on the Special Education Bus Route. This, again, is a viable solution. But Noah wasn’t ready to ride the bus. And the other children at our apartment complex already laugh at him just coming and going from the car. He won’t even go to the playground unaccompanied. I didn’t want to give them one other thing to laugh at him about.

What I didn’t expect is that she said none of these things. Instead, her solution was something much more than I could have anticipated.

 

She said, “What we are wondering is if we could make Noah a member of Safety Patrol? Putting him in a leadership role would be good for his self-esteem. We think that teaching him to say ‘Good afternoon” to children he does not know would be good for him socially. His speech therapist is willing to work with us on teaching him to say the phrases he would need to utilize. It would give him an instant peer group. We believe making Noah a leader would be good for all of us.”

To say I was speechless is an understatement.IMG_7246

    And so Noah began his first leadership role. And, as anticipated, he really took to it. One afternoon, just as the buses had beenloaded, the storm sirens exploded with news of an imminent tornado. Noah quickly asked a teacher how he could “help.” She confessed to me later that she didn’t even think, “Wait. This is Noah. Lets be sensitive to his autism.” Instead she just handed him a sign with an arrow on it and instructed him to tell children being evacuated down a hallway where to sit. With no panic and in clear diction, Noah managed the evacuees with ease.

    Last week Noah graduated from 5th grade. (More about how he accomplished this in following blogs.) At the beginning of the ceremony, Noah and his friend Tony (also autistic) led the school in the pledge. Shortly after this school leadership teams were acknowledged and Noah stood to receive honor as a member of the Safety Patrol.

 

Allow me to be candid and logical for a moment. There is no outward reason Noah should have been a member of the Safety Patrol. Safety Patrol was invented to keep kids like Noah from getting themselves lost or in trouble. Who puts a barely intelligible, autistic child with very low verbal ability in an instructive role? Well, someone who believed he was already a member despite his inability to achieve success the way we typically measure it.

Wendell Berry has written, “A community is the mental and spiritual condition of knowing that the place is shared, and that the people who share the place define and limit the possibilities of each other’s lives. It is the knowledge that people have of each other, their concern for each other, their trust in each other, the freedom with which they come and go among themselves.”

Noah’s school made it possible for him to be an instant member of the community – despite his disabilities – by sharing that place with him. In essence, they created a place for him to be. And in sharing that created space, they did not place a limit on the possibilities of his life. And he thrived there.

Very often I am asked how it is possible to include the disabled in our church programming. I share this example of a school that did more than include. They created a space that made Noah a contributing member in a way that did not define and limit him. This act required no extra government funding or a one-to-one aid people are so fond of reminding me that churches do not have access to. It just required that a space be made.

The creating of that space made all the difference. It made him a member.

 

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Mirror, Mirror in My Brain

Posted on by vangierodenbeck

Noah had an unusual request this Mother’s Day Weekend that might seem insensitive to some, but to me was the greatest of gifts. Last week he brought home a Wal-Mart bag with a “special surprise” he had made in his class at school. Noah has always loved giving me gifts. I read once that some autistic children gain a special attachment to one individual who becomes their “person.” I have always been Noah’s person – the one who sees him through the nastiest of circumstances. It is not unusual for Noah to describe me as his “best friend.” He was excited to have made me something with his own hands for Mother’s Day. But an opportunity arose for Noah to give in another way.

My niece has been enduring a particularly painful season of life. Adolescence is a cruel and emotionally charged time of life for any child but family circumstances have recently resulted in high anxiety, depression and crippling repetitive behaviors. The best our family has had to offer our sweet, and once spirited, girl is unconditional love. But Noah offered Clara something he treasured more.

Anticipating a visit with my mother, sister, and her children this weekend, Noah came to me on Saturday with an unusual request. He was anxious in approaching me. I could tell he was nervous by the way he was meticulously and rapidly wringing his hands back and forth. He stammered so badly at first that I could not understand what he was asking me. After comforting him, I urged him to take a deep breath and ask again. Tentatively, Noah spoke.

“Mom, I know I made that gift for you. And I really wanted to give it you only. But I don’t know if anyone has given Clara anything to say ‘I love you’ in a while. So this time, can I give the gift I made for you to Clara. Just to let her know that I think about her and I love her? I still love you, mom. But I want Clara to know that I love her.”

Noah’s act of reaching out to someone whom he knows is hurting and in need of comfort is perhaps the greatest gift he could have given me this Mother’s Day. It is so not only because it displays typical behaviors that all parents value as a sign that their children are well-adjusted and caring persons, but because it is considered atypical for persons with autism to reach so beyond their own world and into that of another. For me, this confirmed a suspicion I have had for years – Noah’s ability to empathize is heightened by his autism.

In Be Different: Adventures of a Free Range Aspergian, John Elder Robinson helps dispel the classic assumption that autistic people are trapped within themselves. He describes being informed of the motorcycle accident of a friend. In comparing his reaction to the reaction of his other friends, Robinson detected a subtle but important difference.

It is theorized that part of our ability to empathize comes from the structure of the neurons in our brain. Typically structured brains develop in such a way as to place neurons in such a format that allows them to serve as mirrors that makes us capable of reflecting the sorrow of others. Persons with frontal lobe damage, whether from traumatic brain injury or other conditions which affect this area of the brain (like autism) often show difficult internalizing the feelings of others. This is often perceived as self-centeredness. Even the diagnosis of “autism” is derived from the Greek autos, or “self.”

But Robinson describes his mirror neurons as moving “slower, and maybe deeper and stronger.” He writes

The more they took it in, the more I mirrored his feelings, and the worse I felt. Since I have trouble taking in other people’s perspectives as separate from me, I began relating this new bad feeling to myself and the world around me. I was mirroring ‘bike crash’ so naturally that my mind turned to my own motorcycle and the imminent prospect of a wreck…. The distinction between the concepts of ‘me’ and ‘you’ may be a little more blurred for me at times. As often as I’ve been criticized for lacking empathy, exchanges like this leave me feeling like I have more empathy than nypicals. My feeling of empathy move a lot slower but once they get going, look out! They’re very real.(Robinson, 113)

Noah doesn’t have less empathy than people without autism. I think autism gives him more empathy. He is routinely in tune with people around him who are struggling and in pain. Noah senses these things when I might be able to “tune them out.” But Noah’s autism enables him to feel their emotions as if he himself were in their place. In this way, I believe Noah fully experiences the humanity of those around him–more fully than I do sometimes.

And gazing into that mirror in his brain, Noah is moved to act. In fact, he was moved to act in a way that caused him personal discomfort because his feelings for Clara over-powered his own. Maybe his autism actually makes him a better human. Regardless, it was a beautiful Mother’s Day gift – from a beautiful brain.

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Say “Hi” for Me: A Lesson in Membership

Posted on by vangierodenbeck

I’ve got a new story to tell you on Monday, but it makes more sense in light of a post I made last Fall so read this first. Enjoy… 

            The words I had hoped for finally reached my ears. Noah proclaimed, “Mom, I did it! I made a friend!” Moving and starting a new school has been a challenge for us both, but the social impairments that accompany Noah’s autism prevent him for making friends easily. I eagerly asked what his name was and he said, “Lauren.” Before I could comment on that bit of information, Noah added this: “And one of the things that makes her so cool is that she gets to carry a stick around all the time! You know why? Because she is TOTALLY blind. Cool huh?”

            I paused at this comment. Inside I already knew that truth, Noah had gravitated toward the special education class once again. We’ve worked hard to pull him out of the self-contained classroom, hoping that exposure to “normal people” (the neurotypical – meaning those with typically functioning brains) would increase his social skills. As it turns out, being around normal kids just amplifies his differences and makes Noah stand out more. Still, I had prayed for maybe a shy, average little boy. Instead, Noah had found the opportunity to seek out a member of the self-contained class at recess. He went on to describe Lauren to me physically. I asked what they did at recess since Lauren couldn’t navigate the playground very well. He said, “We sit and listen.”

            Hypocrite that I am, I was still somewhat disappointed that Noah wasn’t connecting to typically functioning people. But I decided to be glad that Noah had reached out to anyone at all. Its strange how after everything I have studied and written, I still occasionally miss the grander picture that we are not just bodies and minds alone, but being created in the image of God. All of us.

            Flash forward two weeks and Noah races into the living room at seven o’clock one evening to announce that he wants to do something special for his teachers and friends. He proclaimed that it was time for us to bake chocolate chip cookies. Hoping I didn’t have all the ingredients (Drat – they were all there!) I was motivated to get up off the couch by Noah’s persistence.

            He mixed the batter using my Oster hand mixer and the noise reducing headphones my dad used to wear around jet engines in his job at Delta Airlines. Noah happily spooned them on to cookie sheets and we proceeded to make around four-dozen cookies. I got out cellophane bags, markers and tags to address each bag of goodies. Soon, Noah list of four primary teachers had grown to include the paraprofessional that is helping him learn the recorder in music class, the teacher across the hall from his homeroom (who has probably helped him at this locker), the school secretary who has embraced him as a member of the safety patrol, and the principal. Just when I thought we were done he shouted, “Oh! I can’t forget Tony and Lauren!” (Tony is another friend Noah made from Lauren’s class.)

            The next day on the way home from school I asked Noah how everyone liked his gifts. He smiled and showed me a note on a piece of off-white card stock. Closer inspection showed that the note had been carefully hand lettered by an adult just under Braille imprints. The note read, “Thank you for always asking how I am and saying hi.” Still smiling, Noah said, “Its from my friend Lauren.” Choking back tears, I drove home in silence. But inside I was begging for repentance for being disappointed that Noah hadn’t made friends with a normal kid.

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            When I got home I asked to see the note and it was then that I remembered Noah’s comment about their playground activity. He had said that they just “sit and listen.” From Lauren’s perspective, this is a busy and on-going activity. It is one of the primary ways she “sees” the world around her. It was then that I realized that she was thanking Noah for simply slowing down to notice her and for speaking to her. Which implies that Lauren realizes there are a lot of people who don’t notice her – or who do and fail to slow down to speak to her. Of course, she senses these people around her. She can feel them and hear their presence. But Noah, of all people, engaged with her.

            I use the expression “of all people” because Noah is, diagnostically speaking, not very capable at starting and sustaining conversation. He is no brilliant conversationalist. As it turns out, Lauren doesn’t need very much conversation. Just saying “hi” is all she really wanted. And Noah is capable of just about that. Additionally, I think what Lauren really enjoys is someone who will experience the world alongside her. Just sitting and listening on the playground with someone else is a gift to her. Lauren was created for community the same way we are. And Noah is able to participate in community with Lauren in a way that is very full and rich and meaningful for them both.

            I’ve gleaned a few insights from Noah’s recent encounter. First, I must to continue to develop a sense that people are more than traditional ideas about mind (intelligence) and body. I think this will help me see people as God sees them and then classifications like “normal” will be obsolete. Secondly, we are created for community. Sometimes, others help those of us who aren’t as socially adept into community. Noah reached out to Lauren. Ideally, someone else will reach out to Noah. Who will I reach out to?

As we reach out in love to draw others into community, never under-estimate the power of a simple “hello.” Just acknowledging someone’s presence with a friendly gesture can be all it takes to extend God’s love toward him or her. Speaking as the parent of a child with disabilities, I can say that if you want to be the highlight of their entire week, just notice them. Often we’ve been noticed with stares and giggles in a “take-a-look-at-that-freak-show” kind of way. Obviously that isn’t what I am talking about. I mean to resist the urge to ignore they are there. Sometimes we politely ignore their existence as if it is in poor taste to admit disabled people exist. Or maybe we think it is contagious. Or maybe if we get too close, we will realize we aren’t as different from them as we’d like to believe we are.

So next time you encounter the marginalized in society – those broken because of sin, the disabled, people struggling with addiction, welfare moms, or just the down-and-out – do Noah and I a favor. Extend kindness. Acknowledge their existence. Embrace them into God’s community where the word normal doesn’t exist.

And say “hi” for me.

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The Autism Gospel – Rejection & Fortune Cookies

Posted on by vangierodenbeck

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.