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]

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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 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 PURE Ministry

PURE Post – Soon and Very Soon

I wanted to highlight another piece that I wrote for PURE Ministries about how respite ministry looks a lot like “kingdom come.” I hope you enjoy it.

 

After 3-hour night of respite ministry, I realize I hadn’t really known what to expect. That night, I had seen amazing relationships being forged between typical people and those we cherish as PURE. I had personally witnessed a schedule and format that was complete genius as it allowed everyone to focus on their strengths and abilities rather than their deficits. Meeting and speaking with servants of this incredible ministry had left my fingers itching to write. But we were instructed to assemble in a large group meeting room for some kind of benedictory activity, so I slowly navigated toward a seat in the back of the room.

The last thing I expected, knowing how much energy this night had cost me personally, was a worship service. I don’t think I had ever considered what it would be like to worship with so many PURE people. Because my son’s primary anxiety trigger is auditory input, worship is very difficult for us. Noah simply cannot handle all the sensory information in the form of music, voices, clapping hands and moving bodies. His typical posture is to sit, shoulders hunched-over in a protective posture, with his hands over his ears.

This has perhaps been one of my greatest sorrows as the mother of my PURE child. Worship through music has been a life-long love of mine. I learned not only to sing harmony in church at my grandmother’s side, but also to sight-read music.  As a matter of fact, the first book I probably every “read” was a hymnal. As I grew I joined choirs and, eventually, became a children’s choir director and worship leader. Not being able to share my love of worship with Noah has been difficult. I suppose it is natural to want to take that which brings me so close to God and impart it to my son. But for Noah, it is anything but “natural.” It is painful.

As we took our seats in the meeting room, I double-checked Noah’s noise reducing headphones to insure that they would help him endure a time of worship. I was comforted to see other PURE people entering the room taking similar precautions.  So I settled us in as Miss Lorie began a few preliminary announcements. Then the completely unexpected happened.

After calling into the audience for the worship leader, she handed the microphone over to a young PURE man who was about 14 years of age. It was clear that he had done this before, for everyone began clapping in preparation for a song that I would never forget.

Read the rest of the story by following this link: Soon and Very Soon

Posted in Uncategorized

Shaping Special Hearts: What to Train For 10/29 by CMConnect | Religion Podcasts

Join Vangie as she and special guest Harmony Hensley continue this month’s theme of Training for Special Needs Ministry. Listen along as they unpack strategies for training your volunteers that will empower them to step out in faith and shape a special heart!

Harmony Hensley has a background in vocational ministry, as well as a dual degree in Ministry Leadership and Biblical Studies from Cincinnati Christian University.  She has trained churches across the country and continues to consult today.  Her passion is helping churches to engage families affected by disability.

 

Shaping Special Hearts: What to Train For 10/29 by CMConnect | Religion Podcasts.

Posted in Uncategorized

Fishers of Friends: a Membership story

What follows is a parable from real life about friendship and one becoming a member of the fellowship of another despite great differences. I am ever thankful for the man and the boy who made the story real, and to God for allowing me to witness it and tell  it.

 

We attend a small church full of fun-loving, kindhearted Christ followers. Were I to tell you about each of them I would begin each introduction with, “Now there is Cathy…she is my favorite.” So will be no surprise to any of them to hear me begin “There is a man at my church named Ned and he is my favorite.”

It isn’t uncommon for Ned to call to check in on me every once in a while. He takes a personal interest in if my car is in fine operating condition and often inquires to my health and that of my husband. He is a builder of many things by trade. Often I am privileged to view of a picture on his phone of something he has built. We are friends.

Knowing Ned the way I do, it really didn’t shock me when he expressed a desire to take Noah fishing. Since we moved so close to the lake a year ago, Noah has constantly expressed a desire to go fishing. Were my father alive, nothing would have made him happier than spend a day on the banks of Lake Lanier with Noah. But I fear I have forgotten most of what I learned by his side.

When Ned heard of this need, he immediately saw an opportunity to share something. It should be said that he doesn’t have any formal training in special education. But Ned heard that Noah had an interest in something he was interested in and offered to spend the day with him.

Ned took this opportunity very seriously and called me several times to work through both our schedules to find a time for their outing. We worked for about a week until we could move around this and that to find an open morning. It took purposeful planning on his part to make a space for Noah during his busy week.

And they fished.

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 It should be said that Noah’s difficulty in large and fine motor movement make certain elements of fishing more complicated than others. For instance, Noah still lacks the fine motor skills to tie shoelaces. I wasn’t sure how he was going to bait a hook. Additionally, Noah is left-handed so standing behind him to model hand-over-hand is impossible (for me at least.) But I was sure if worst came to worst, Ned would just it for him. As for large motor skills, casting takes more large motor planning than you might think. I knew if Noah became frustrated by these two things before he even got his hook in the water all would be lost.

It was how these complex obstacles were completed seamlessly that began my reflection of this parable. Noah became proficient at baiting his hook. How? Well, Ned might not be instructed in occupational therapy principles to enable him to teach the correct over-under method, but as it turns out Ned is even more capable than that for you see, Ned is left-handed. It was much more natural for Ned to instruct Noah than it would have been for the best right-handed therapist. It seem that Ned had been especially equipped for this task without any preparation. (Maybe I’ll ask him to teach him to tie his shoes next.) I assume that observing Ned cast in all his left-handed glory allowed Noah the exact view he needed to calculate his motions and then imitate them.

Noah caught ten fish that day.

Allow me a moment to breakdown what may appear to be sweet story into teaching on accepting the other as a member.

  1. Ned heard… This hearing was possible only through Ned’s placing himself in proximity to our family. He has a taken an interest in our family and its needs. He placed himself in proximity to know us and to know Noah. His nearness has been a blessing to my son’s life. How often do we place ourselves in proximity, in nearness, to someone other than us?
  2. He followed through…The intentionality of this simple, peaceful appointment cannot be overlooked. It was just one morning of his life, but it required a purposeful following through of his best intentions. How many times do we genuinely mean to get around to spending time with someone but let other things gain importance before it ever happens?
  3. And they fished…Fishing is, in general, a peaceful and relaxing activity. My father always declared he would be a “better man” if he lived on the water because of its relaxing and peace-giving properties. But the lack of busyness perhaps required even more of Ned. Noah is no brilliant conversationalist. Many people are uncomfortable around the silence. It also placed Ned in strange environs with someone who clings to familiarity and routine. In short, it could have been disastrous. Ned, however, did not seek a proactive solution to every eventuality. He was simply open to Noah. Openness requires we let go of any preconceived expectation and just enjoy someone for themselves. In this way we may become full members of one another in a community formed by love. Henri Nouwen wrote concerning what constitutes a community in The Genessee Diary. He reflected

The uniqueness of our neighbors is not related to those idiosyncratic qualities that only they and nobody else have, but it is related to the fact that God’s eternal beauty and love become visible in these unique, irreplaceable, finite human beings. It is exactly in the preciousness of the individual person that the eternal love of God is refracted and becomes the basis of a community of love.

Ned was able to, in openness, look beyond Noah’s idiosyncrasies and oddities to see him in the image of God – unique, irreplaceable, and precious.

4. Left-handedness…What makes me smile most is that Noah and Ned share something that Noah and I do not – left-handedness. They could instantly identify with one another. They probably have little else in common, but this simple identification made all the difference. The willingness to identify with another is a gift to them. Because of that willing identification, Noah sought to imitate the person before him.

 

PROXIMITY + INTENTIONALITY + OPENNESS + IDENTIFICATION = MEMBERSHIP

 

I have no doubt this will be the first of many outings for the” Left-Handed, Para-Autistic Fishing Club of Cumming.” And each will be a parable to itself testifying to membership.

Posted in Uncategorized

Say “Hi” for Me: A Lesson in Membership

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.

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:)