Posted in Living Peacefully, The Autism Gospel

Healed on the Sabbath

10 Now he was teaching in one of the synagogues on the sabbath. 11 And there was a woman who had had a spirit of infirmity for eighteen years; she was bent over and could not fully straighten herself. 12 And when Jesus saw her, he called her and said to her, “Woman, you are freed from your infirmity.” 13 And he laid his hands upon her, and immediately she was made straight, and she praised God. 14 But the ruler of the synagogue, indignant because Jesus had healed on the sabbath, said to the people, “There are six days on which work ought to be done; come on those days and be healed, and not on the sabbath day.” 15 Then the Lord answered him, “You hypocrites! Does not each of you on the sabbath untie his ox or his ass from the manger, and lead it away to water it?16 And ought not this woman, a daughter of Abraham whom Satan bound for eighteen years, be loosed from this bond on the sabbath day?”17 As he said this, all his adversaries were put to shame; and all the people rejoiced at all the glorious things that were done by him. [1]

 

Part of my son’s diagnostic story is that I was once told he would never read, write, or speak. When I report this at IEP meetings, educators often have one of two reactions. Often they smirk and comment on the fallacy of shortsighted clinicians who shut doors too quickly. Others smile sympathetically in realization of just how much work it must have taken to get where we are today.

Today he reads. He writes. He speaks.

For as long as we have been doing it now, it still never gets old to hear him read aloud, or better still to hear him read something that he himself has written. I think this is a small gift I receive for all the tough nights along the way. But nothing – absolutely nothing – thrills my soul like hearing him read God’s Word during our Sunday worship services.

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Printing his scripture out in a dyslexic friendly font makes him feel more comfortable.

Our church customarily invites Noah to be a part of our worship in this way. This week his text seemed particularly poignant. Luke records an encounter on the Sabbath Day between Jesus and a woman with a long-term illness. While the thrust of the passage is Jesus’ defense of healing this woman on the Sabbath, it was other wording in this passage that caught my ear when read in my son’s voice.

“Woman, you are freed from your infirmity.”

Other interpretations of the Greek ἀπολέλυσαι (apolelysai) read “removed,” instead of healed or freed. In the place of infirmity of illness, a near definition of ἀσθενείας (astheneias) is “weakness” or “limitation.” This could easily read “you are removed from your limitation.”

You are removed from your limitation. And in that there is healing.

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Noah starts his Sundays with a walk around the farm where he greets the animals – especially Smudge the Pig.

I feel that we are removed from our limitations each time our church seeks to include Noah in leading our service. Because the truth of it is, his reading isn’t polished at all. His fluency is so choppy that you can’t really follow along. His speech impediment makes understanding him difficult as well. Our limitations – disability, illness, weakness – are still present. But for just a little while, he is removed from them.

And we are healed on the Sabbath.

 

[1] The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Lk 13:10–17.

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 Living Peacefully, The Autism Gospel

Going Forth

Everyone asks, “So aren’t you thrilled to be back in Atlanta?” I know the expected answer is a resounding “YES!” This is, after all, my hometown. No one is asking for an interpreter when I speak in public, and I can buy Dukes Mayonnaise at my local grocery store instead of having it “imported” by friends. But re-integrating ourselves has been challenging. Everything is comfortingly the same and disconcertingly different all at once. As our little family has healed, this is one of the things we have had to come to terms with.

I have been comforted by how present and faithful God has been to Noah during this transition. I can’t imagine how absurdly difficult the past nine months have been for him. Autism makes us far less portable than the typical family. There is just no escaping this fact. His entire life is one amalgamation of sensory experiences that provide anxiety on some level. To one degree or another, he spends most of his day working to cope with his environment. At times, it is clearly painful for him yet the disquiet of reorientation is part of his daily experience.

We’re at a new church home that we are very excited about. I’m sure I’ll be sharing more about them, but know that this kingdom outpost has already embraced Noah with enthusiasm. But that didn’t stop me from reverting to old habits a few Sundays ago when we entered only to find rhythm instruments placed throughout our worship room. I immediately began an exit strategy for Noah’s eventual meltdown due to the over-stimulation during worship.

Soon, our worship leader encouraged us to pick up an instrument and join in a song. Jason and I didn’t move, afraid to set off panic in Noah. I don’t know if we were hoping he wouldn’t notice what was happening, or if we were just too tired at the moment to do anything but rest and hope that everyone would understand when Noah became distressed. Much to our surprise, neither thing happened. Instead, Noah began to search for the nearest instrument he could find and, grabbing a tambourine, played along in perfect rhythm.

Astonishment doesn’t begin to describe our reaction. Even though we are new there, everyone who stood as witness to Noah’s act of praise was surprised.

We have come out of a wilderness not of our own making. Some of you may understand better than others. More than ever before, I feel enveloped by an everlasting love that has been faithful to us. Maybe Noah does too, and he just had to rattle a tambourine – despite the discomfort the noise causes his brain.

And me, well, I wanted to dance along.

 Thus says the Lord:

“The people who survived the sword

found grace in the wilderness; when Israel sought for rest, the Lord appeared to him from afar. I have loved you with an everlasting love; therefore I have continued my faithfulness to you.

Again I will build you, and you shall be built, O virgin Israel!

Again you shall adorn yourself with timbrels,

and shall go forth in the dance of the merrymakers.” [1]

 

[1] The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Je 31:2–4.

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

Ways to Make Your Church Inclusive on Easter

Special event Sundays, as a children’s minister, were always the most daunting. It was a steeple chase of greeting visitors, gathering extra supplies, resourcing volunteers, and (let’s not forget) sharing the Good News. But for me, what I dreaded the most was knowing that Noah would be completely overwhelmed by the entire project. And, completely selfishly, if there was a kid in the building that I wanted to be touched by the message it was my own.

But new clothes for special occasions are itchy. More visitors mean more noise and chaos. Special events mean special programming and a deviation from the “normal schedule.” At Easter there were beautiful lilies that lined the walls of our sanctuary but you could smell them on our hallway and it drove Noah insane. Then the whole lesson was about death (which was scary) and resurrection (which was so abstract). The entire day was a nightmare. I remember planting my forehead on my keyboard and sighing, “he is risen…this is good” over and over again.

Even if you “don’t have special needs kids,” consider reading this great information from Barb Newman and CLC Network. Implementing these ideas is simple and will enhance the worship service for most visitors and all typical children. And then, just in case you encounter a PURE family this Resurrection Sunday you’ll be ready.

Ways to Make Your Church Inclusive on Easter.

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

The Autism Gospel – Hope for Misfit Toys

A post a wrote a few years ago about Noah’s view on a holiday classic…enjoy!

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I’ve been doing “research” for a talk I’m giving next month. It’s a holiday gathering so the theme is preset, and I’ve got a pretty good idea where I’m going with it but I still like to research thoroughly. In doing my research, Noah and I have been watching some of the classic holiday movies. Watching a movie with Noah can be a strenuous experience. You have to be prepared for a lot of stopping and rewinding so that he can memorize a line in order to quote it perfectly 2 months later. As far as Noah is concerned, on the 8th day God made TiVo.

We were watching Rudolph the Red Nosed Reindeer. As we began Noah had several comments to make about how the characters looked, or how much he loves Christmas and how excited he is that “its almost here”. But his comments about Rudolph gave me cause to muse. It wasn’t very far into the plot before Noah grabbed the remote and, instead of rewinding, paused the dvd and said, “Now that is my favorite character – Hermie the Elf.”

I replied, “What do you like about Hermie so much?” Noah answered, “Well, we both have kind of yellow hair and also, Hermie is happy and sad at the same time.” When I asked how it is possible to be happy and sad at the same time, Noah said, “Well, you see Mom, he is a misfit. He is happy because he wants to be a dentist, but sad because no one understands him. So he is happy and sad at the same time.” Not passing up on a “Noah moment” I asked, “Are you happy and sad at the same time?” Noah answered, “Yes I am, it just depends on how I open my eyes.” While I pondered the weirdness of that statement, he began the video again.

Soon, Rudolph and Hermie have teamed up and run away in an effort to “be independent together”. They jump on an iceberg and head out for points unknown and arrive at The Island of Misfit Toys. At this point, Noah stops the video again and says, “Mom pay attention, this is the important part.” (At this point, I also grabbed my laptop.) They are greeted first by the sentry who appears to be a Jack-in-the-Box, but informs them that he is actually a Charlie-in-the-Box. This is why he is a misfit – because, “…no child wants to play with a Charlie-in-the-Box.” Soon many other toys that have peculiar traits greet them.

“How would you like to be a spotted elephant, or a Choo-Choo with square wheels on its caboose, or a bird that can’t fly but swims?” they are asked by the toys. When Hermie and Rudolph inquire how they got to the island they answer that the king of the island, King Moonraiser, searches for toys that no one wants and brings them to live on the island until someone wants them. Noah turns to me and says, “See, the king has open eyes.”

Now its quite possible that Noah was just discussing the finer points of 1964 made for tv animation, but somehow I don’t think so. You see, it’s a story of Hope. Advent is a season of preparation for the coming of Christ and a part of that larger story is Hope. In fact, it is woven all the way through scripture. In this story, the toys on the island have cause for Hope because they have a King that sought them out when no one else wanted them. And more than that, he provides for them a safe place of respite until they are wanted again. Please don’t miss the point – the King searched for them. This is the best part of the Hope: because the King had ‘open eyes’ no toy – no matter how big a misfit – went unredeemed. All toys are of value to the King, no matter how broken.

Noah changed the direction of my research. He indicated we can be happy or sad about who we are, it just depends on how we “open” our eyes. I rolled that over again and again in my brain all evening. I finally gave up around 4am and grabbed my Bible and began reading. Here are a few passages I was led to:

 For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to him. 

2 Chronicles 16:9

I praise God for the Hope I can find because I have a King that came looking for me. Unwilling to allow me to remain a misplaced, misfit – he is redeeming the parts of me that he can work with and discarding the parts that he can’t. I’ve got Hope.

 Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Hebrews 12:2

I thank God for the Hope of the season that comes in the form of a source on which to fix my eyes. I’m a misfit, but he isn’t done with me yet. I am actually beginning to suspect that we misfits might be his favorites. Maybe it’s easier to show us how to direct our gaze. After all, it’s all in how we choose to open or focus our eyes. I’ve got Hope.

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.  2 Cor. 4:18

I thank God for embracing the misfits and then using us in a wonderful way to show his glory. We have a marvelous Hope because we open our eyes to the eternal and not only the temporal. We’ve got Hope.

To all the misfit toys out there, Noah says there is Hope for us yet…it just depends on how we open our eyes.

Posted in Uncategorized

The Autism Gospel – Come And Die

We have been talking with Noah for years about baptism. We probably started when he was about eight or nine years of age. All the rest of the kids his age were starting to make the decision to “give their life to Jesus,” so we assumed Noah would be excited to do so as well. After all, he has always been more at home in water than dry land so fear of drowning wasn’t an issue. He had heard all the stories, could give all the correct answers and say all the right things. So what was holding us back?

But Noah was unequivocally uninterested. More than that, he promptly shut down any conversation about Jesus that led to his own immersion in the waters of baptism. I would ask if he believed “in Jesus.” Noah would look at me strangely. I would elaborate. “Noah, what do you believe about Jesus?” He said, “Well, he was Jesus.”

So I got very specific. “Noah, what do you know about Jesus? What was true about him?” Suddenly he could converse about Jesus’ love for people, his compassion, miracles, healings, the Virgin Birth, his death on the cross – all of it.

This once frustrated me. But I think, after some research, I understand why. Paul Collins, in his book Not Even Wrong, chronicles autism throughout history. A historian and the parent of an autistic son, he describes these disparate views as “not even wrong.” He writes,

“Wolfgang Pauli used to deride colleagues in theoretical physics who disagreed with him as ‘not even wrong’. He meant this as a put down – that the questions they were asking were so off-base that their answers were irrelevant. Yet Pauli’s notion could also be applied to those who are autistic. They do not respond in expected ways to questions or to social cues…but then, only a person working from the same shared set of expectations could give a truly wrong answer. The autist is working on a different problem with a different set of parameters; they are not even wrong.”

Here is what I came to understand. Noah did not necessarily think he should have a personal “point of view” about Jesus. Our expectation is that people come to “accept Jesus as their Lord and Savior.” For Noah, Jesus is who he was. I don’t think he has a sense of urgency to develop an opinion about something that is, to him, a fact. On that count, I think Noah was not even wrong.

Still, Noah’s fear plagued me. He finally asked us just last weekend if we thought autistic people would “go to hell” if they weren’t baptized. We knew he was very close to a decision about what it would mean for him if he did not make a choice to do this. My husband took a very different approach as we continued this conversation.

He said, “Noah baptism is a symbol. Just like the icons on your ipad are symbols. When you open that symbol, you know what kind of program you are going to find there. Baptism is a symbol to everyone that you are a Christ follower. If people were to spend time around you and get to know you and kind of ‘open you up’ like that icon, they would see a person who believes in Jesus and wants to follow him.”

Noah replied, “Then I want to do that symbol. I want to do it this Sunday.”

We practiced giving his confession and prepared him as best we could for the freezing waters of our apartment pool – since our church doesn’t have a baptistery. I asked Noah what strategies he would need to make this less stressful, like his earplugs or swim mask. He said, “Earplugs are fine but I’m not wearing my swim mask. I’ll just have to get water in my face. This is not swimming. It is a symbol.”

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When all was said and done, later that night Noah began to cry during dinner. Tenderly I pulled him aside and asked him what was wrong. He tearfully explained that he was afraid of what would happen now. He said, “Now that I follow Jesus what if something happens and I die? What if you die?”

I couldn’t understand his sudden panic. I reassured him that I was not sick and planning to die anytime soon. I re-explained that baptism had been a symbol of how we live, not just of what happens after we die. Then he said, “But following Jesus is hard. We might die. I don’t want you to die yet. I don’t want to die yet. But now I am following him so I have to. Now I am a symbol.”

Then I realized that Noah had really internalized Jesus’ command to “follow me” – a call to come and die. Die to yourself and anything you want that stands in the way of kingdom. A call to die to our desires and motives and, instead, live for his plans for our life. Die to comfort and security and embrace faith in the unseen. Die to our own fears and live as a symbol of Christ to the world.

It took Noah longer to get here than I probably would have liked. But when he arrived, boy did he arrive! I think Noah fully comprehends the way of the cross in ways I might like to try and forget. When he repeated that Good Confession yesterday, he completely embraced a way of life that not only means living follower of Christ daily, but also living a life marked by a symbol of death.

After all, he did bid us come and die.

Posted in Uncategorized

“Special…but not in the Bad Way”

It seems that I have landed myself in a somewhat controversial vocation. Initially, I didn’t dream that special needs advocacy could provoke so many disputes. I had assumed that everyone would be on the “same page.” Silly me.

While I knew of (and completely support) a variety of approaches for ministry to children with special needs, I have learned over the past year that many times the waters are murky. Terms like “inclusion” and “self-contained” claim prominence in a debate that I hoped would be about drawing people to Jesus. People who, by the way, desperately need the Story.

The Story I am referring to is the old, old story – that overarching story of reconciliation that we call The Bible. People with and those affected by disability need to hear the unmistakable refrain that echoes through all 66 books: God created humanity in his image, loves us, and went to great lengths to redeem us. All of us – even those that the world considers damaged, broken and disposable.

Last spring I was given an opportunity to do something I never thought I’d be able to do. I was asked not only to edit materials in such a way as to tell that story to children with special needs, but to help design a VBS format to do it in. Beyond the arguments and disputes of “inclusion” and “self-contained” classrooms, I got to write materials that send the message of the Gospel out for all children. Even those who are very different.

Noah was thrilled with my opportunity. When I was in ministry, Vacation Bible School was the bane of his summer. It disturbed his schedule. The decorations disrupted the predictable environment he clung to. Everything from worship to crafts to Bible story was offensive to his delicate nervous system. He even hated the shirts. Over the years, my teaching team found countless ways to integrate Noah into VBS. Those efforts were precious to both of us.

When he heard I was writing to give suggestions that make it possible for kids like him to have an easier time at VBS he said, “This is great. We can do it Mom, if we just have a little help.” That “little help” is what I have been working on for several months now. As I wrote I found it included modifications to story telling techniques and games, as well as instructions on how to make “members” of the disabled.

Offering them places as members in our community, it turns out, has much more to do with making ourselves more open to them than changing them. I will ever be thankful to Standard Publishing for their openness to every suggestion I made. As a matter of fact, in a meeting when we discussed available space for both a special needs amendment and a “regular lesson” the question was asked: What happens if we don’t have space for both? The answer given was: Then the special accommodation BECOMES the lesson for EVERYONE. That, my friends, is inclusion on a level different from any popular dispute about least restrictive environment. It is about membership.

I’ll prove it to you.IMG_8750

On top of the enormous opportunity to write for this project, the team invited Noah and Ito be a partof the video shoot for the VBS video. So, Noah and I, armed with noise reducing headphones and other sensory accommodations trekked to Dayton,Ohio. If you are wondering what Noah thought of this you will be glad to know that he kind of viewed it as a mission trip.

He was determined to show people what a “little help” looked like. So learned the VBS songs and performed them on video – with his noise reducing headphones. He took park in lessons and games using those and other accommodations I had written. For a break in the day we visited Safari Sensory Station, a special space I created for sensory breaks and one-on-one teaching at VBS.

 But here is the proof of membership…

At lunIMG_8747ch on Day 2 of the shoot we were having lunch in the Green Room (which as Noah pointed out was not “green” at all). He and I has gone through the line ahead of time and were sitting alone at a table enjoying lunch. Soon the other kids and adults filed in and started eating. But then something amazing happened.

I looked up from my sandwich to see 5 kids from the group standing with their plates at our table. One of them said, “We didn’t want Noah eatingalone. Can we sit here with him?”

Why did this happen? Why did 5 kids who had never met Noah just 24 hours before not want him to eat alone? Besides, wasn’t I there? What prompted them to include him in their lunch bunch? How did he become a “member” of a group of strangers?

I can tell you how. He had been included, to the best of his capabilities, in worship and lessons and games and crafts. Did he take breaks? Yes. Was he in 100% of every activity? No. But his very presence and participation on some level told these kids that he belonged there. He was a member of them.

At the end of our time there I asked Noah how he felt about the project. He said, “It made me feel really special – but not in the bad way.” Apart from feeling different and apart from the group, I think Noah felt honored for those differences. Still a member of the body, but with a very unique gift to offer.

You know, special…but not in the bad way. That, my friends, is membership.

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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:)