Posted in Living Peacefully, The Autism Gospel

Beautiful, Peaceful Feet

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”[1] 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.’”[2]

noahyardshoes

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.[3]

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.”

(Isaiah 52:7)

[1] Henri J.M. Nouwen, Adam, God’s Beloved (Maryknoll, N.Y.: Orbis Books, 1997), 15.

[2] Ibid. 17.

[3] Ibid. 36-37.

Posted in The Autism Gospel

Finding Grace at the Gym

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.)bike 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.”

gymToday, 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.

Posted in Uncategorized

The Autism Gospel – Believe

I was packing my well-worn suitcase for a speaking engagement at yet another conference. Always remembering to rehearse Noah’s weekly schedule in my absence, I called him into my room as I packed. We went over which members of our church were providing respite for us each afternoon, what he could have for snack, and other essential items on the week’s agenda. After reciting the plans, Noah asked what I was going to be doing. He knows that I teach about “people like him” and how to include them in church and school. He understands that I tell stories about our life together and how autism impacted our life. But he surprised me when he asked, “Mom, you won’t forget me when you are gone will you?

I chuckled as I placed more clothes and books in my suitcase. The idea that Noah is ever off my mind for more than five minutes is ludicrous. My entire life has become about telling our story so that others can find hope. I smiled and casually quipped, “Noah all I do is talk about you everyday in lectures while I am gone. How in this world could I forget you while I was gone – even if I wanted to? For heaven’s sake Noah, if it weren’t for you I wouldn’t even have a job.”

I turned to continue my task but was brought to full attention as Noah came around the bed and placed his hands on my shoulders. Looking me full in the face and straight in the eye, Noah imparted a wisdom that I can only see as more of our autism gospel.

“Oh, Mom. You say you wouldn’t have a job if it weren’t for me, but I think you wouldn’t have a job if it weren’t for you because you were the one who always believed.”

Walking away satisfied, Noah went back to his room to continue building Legos. Completely humbled, I sat on the floor at my bedside and wept. I wept for all the days that I left therapy completely defeated because he wouldn’t cooperate with the therapist. I wept for the day I was told he was being moved to a behavioral unit at school because he was incapable of cognitive processes. I wept for all the times I came upon him sitting in the hallway outside a Sunday school classroom because the commotion and excitement of the lesson frightened him. I wept for all the moments over all these years when I had perceived that we had failed.

And I wept not because we have proved people wrong or in gratitude that we have come so far, but because Noah recognized all of those moments not as monuments to failure but rather as milestones in a journey of belief. Mainly, I think I believed because my other option was so dismal. I could either choose hope or desolation. I could continue to work on small, manageable solutions to our difficulties, or I could just stop and accept despair. Mostly, I just hoped there was more to us than it appeared.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 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. [1]

Noah sees our story as one of hope through a series of seeming defeats where someone chose to believe against all odds. Perhaps we should all take a page out of this autism gospel and choose to believe in the unseen in light of eternity. I think that is where we could find hope and peace. I know that Noah has.

The gospel of this autism moment tells us that someone needs you to believe in an unseen hope. There is probably someone who needs you to see past the defeat and unmet expectations. Believing in Noah didn’t look like tons of new therapy techniques or another medical solution to our crisis. Believing didn’t involve continual work to meet his IEP goals. We did those things, but that wasn’t the act of believing. Believing didn’t require me to have an immediate solution. Believing asked me to have hope in spite of the fact that I didn’t have a solution.

I offer no magic solutions on this Autism Awareness Day. I only propose that we choose to believe that all of us are more than our deficits. Noah taught me the value of just believing in the potential of what we cannot see. Maybe soon we’ll have Autism Acceptance Day where we celebrate how different and unalike we are.

But until then, just believe.

 

[1] The Holy Bible: New International Version (Grand Rapids, MI: Zondervan, 1984), 2 Co 4:16–18.

Posted in Uncategorized

Shaping Special Hearts: Special Needs & Training 10/03 by CMConnect | Religion Podcasts

Join host Vangie Rodenbeck, and special guest Rebecca Hamilton, as they unpack issues related to Training Volunteers in Special Needs Ministry.  Listen as they debunk popular “myths” related to training volunteers for disability-related ministries and learn about two amazing resources you can use to train and organize volunteers today.

Rebecca Hamilton is Director of Ministry Operations at Key Ministry.  Since joining Key Ministry in 2006, Rebecca has enjoyed blending her Christianity and love for children with the training and experience she has had in the non-profit sector.

 

Shaping Special Hearts: Special Needs & Training 10/03 by CMConnect | Religion Podcasts.

Posted in Uncategorized

The Autism Gospel – Rejection & Fortune Cookies

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.

 

Posted in Uncategorized

A Whole Lotta Shakin’ Goin’ On

I despise change. Maybe it is my autism showing. Yet I confess it willingly so that you might fully understand how difficult it is for me to open myself up to new things. I hope you will appreciate just how challenging life is right now when I expand on how many things are being “shaken up” right now.

Three years ago I started blogging to help me process some of our struggles with autism. To my surprise I found an audience for both our pain and struggle as well as our victories. Many members of this audience either know us personally or have loved ones with a disability. But some of my readers identified with our struggle because the emotions tied into their own hardships can be reflected in our journey. Pain is universal.

I also began work on a Masters degree in Theology around the same time. The more I studied about God, the more I reflected on his work in my life and in the life of my son. I had always been haunted by issues surrounding spirituality and autism. Questions like, “Will Noah every understand himself as in a relationship with God?” were answered along the way. But more abstract concepts required further study. For instance, if Noah is neurologically “damaged” (clinically speaking), what does it mean to say he is still made perfectly in the image of God? Faithful readers of this blog will note that, very often, we are not treated like we “look like God.”

So I spent the last year of my life writing a thesis on that very topic. My thesis statement reads: In contrast to classic scientific, popular, and even some Christian assumptions about disabilities, a theologically responsible perspective calls us to recognize that neurologically disabled people are just as human as neurotypical people because they, too, are created in God’s imageThis may seem like common sense to you, but if you have ever been treated as “less than” because of a disability, you understand. Trust me, this is a whole new way of imagining what humanity looks like AND what God looks like. It has been the experience of a lifetime. And today, at 3pm, I defend that thesis. (Pray saints, pray!!)

To shake things up even more, I have developed a relationship with Standard Publishing in a way I never could have imagined. They heard the message communicated through my thesis and in my blogs and thought, “Hey…there is something to this the world needs to hear!” I have been partnering with them to write lesson amendments that can be used by churches include children with special needs in classrooms with “normal” (typically developing) children. This relationship is growing and more resources are being created each quarter. I will be posting a link to those resources as soon as possible. Please don’t laugh when we see me referred to as their “Special Needs Expert.”

Because having my picture on resources wasn’t uncomfortable enough, this partnership has led to another one. This winter I presented several workshops for Standard Publishing at Children’s Pastor’s Conference in Orlando and San Diego. INCM (International Network of Children’s Ministry) sponsors this event. I will be featured on in their magazine in an interview about “Special Needs and The Church.” I also shot a few videos about “Recruiting in Children’s Ministry” for them that will be featured on their website next month. (Again, all of you who know me personally are aware just how completely out of my comfort zone I am at this point not only in telling you this, but in my life in general.)

This partnership – you guessed it – led to another. And here is perhaps some of the biggest news and the reason for the change of blog site.

Starting May 14th, 2013 I will begin hosting an internet radio show called “Shaping Special Hearts with Vangie Rodenbeck.” (gulp…there, I put it in writing) This show is co-sponsored by Standard Publishing and cmconnect. The goal of this every-other-week show is to have conversations around topics in special needs and disability ministries. I pray that this can be a resource for churches, ministers, volunteers and parents to help us show the world not only HOW to minister to the disabled but also how the disabled minister to US by showing us what God looks like in unexpected ways.

So this is a new blog site for a few reasons…

  1. I will be able to link resources that I am writing more easily from this site.
  2. The radio show will be embedded on this site and easier to find.
  3. Blogging – which I promise there will be more of – will be easier for people to access my visiting vangierodenbeck.com. The blog will be the main page of this site.
  4. There will also be a page “About Me” dedicated to letting people know how I have chosen to see the “holy in the common place” and the image of God in our struggle.
  5. And for people who wish for me to consult or conduct a seminar for their church or school, there will be a page on this site dedicated to that as well.

I think that is about as uncomfortable as I can possibly get. But I was inspired this morning by a video posted by a Facebook friend in which her child is having a “sensory meltdown.” It brought back all the memories of what we have lived through and continue to struggle with. Her transparent plea for understanding and further education about the struggles families with disabled children have pushed me to post about A Whole Lotta Shakin’ Goin’ On in my life. None of my pain and experience can have redemption if I don’t help someone through a similar struggle.

I am sure your question is: How is Noah handling all of this? Noah tells me all the time that I am “going to be famous because of him and his autism.” He is quite the advocate for autism and has started research of his own. He likes to call himself my “autism guinea pig” with a sly smile on his face. It isn’t uncommon for him to say, “Tell people how much autism is like God.” He is quite the evangelist.

So more stories will follow. More resources will be posted. And you can follow the radio show if you are so inclined. If you know of anyone who can benefit from this, pass it on. I’m always looking to learn from others about ways we can show the world that disabilities aren’t the worst thing that can happen to a family.

Stay tuned to hear what I’ll be involved in next. I’m thinking “Autism – The Musical!” I envision something with banjo music and tons of repetitive motor movements. I want Carrie Underwood to play me:)