Posted in The Autism Gospel

Can You Drive?

I never really knew how old she was. I never wanted know her like that even though no part of her inspired fear; her gentleness was evident to all. What my sister and I did know was what we had been told – that she was “special,” and “more like a little child.” We spoke to her each Sunday at church, more because of her friendliness than our manners. Once we grew to be teenagers, the topic of conversation would begin to follow a single thread for the remainder of our years together. On The List of Things I Wish I’d Known to Do, stopping to really spend the time with her makes the top ten.

Her name was Sadie and she was probably about 10-15 years older than me. Through her thick glasses she would scrutinize us happily as she made conversation each Sunday after services. I confess that sometimes we avoided her, not having any experience or education about how to communicate with people like Sadie. But when I approached driving age, she sought me out each week to ask the question that seemed to burn in her consciousness: “Can you drive?”

I would answer according to the circumstances of the time. “No,” before I was permitted or licensed, and then “Yes” later. This was her conversation starter each week: “Can you drive?” I remember thinking that this must be all she knew to talk to me about. I now know the reality of how defining the answer to that question is for people like Sadie.

When I began to accept all the things my own child, who is affected by disability, would probably never do, driving was at the top of the list. This isn’t just because it is another rite of passage for young adults, which I would miss out on. It wasn’t until I started my life as his advocate that I understood how the ability to drive delineates every opportunity open to them for their very precarious futures.

Driving means potential employment, independent living, a bank account, and all the amenities thereof. But not being able to drive, well, the options suddenly narrow to a trickle. It means living near or with family. Or, it can mean living in a city center so you can have access to public transport. For some, the easiest answer is early placement in a group home with employment in a sheltered workshop. The answers of how to live as a person with a disability when you can’t drive are varied (and possible), but our potential was definitely limited.

My sister and I used to laugh on the way to Sunday afternoon lunch at the Piccadilly Cafeteria as we chanted, “Can you drive?” Then it seemed like such a silly question. But on this side of life, I hear her saying “Can you drive? Because I can’t and it has changed everything for me. Tell me about driving. Is it fun? Do you like it? Can you go places? What kind of places do you go? Would you take me?”

When Noah announced that he wanted to learn to drive because he knew it would be important to being an independent adult, we realized that he knew the limitations he would face without a driver’s license. It’s been tough. It’s a very social activity (more about this later) that taxes his mental muscles each time he gets behind the wheel. But we’re 8 months into the process and Noah is driving.

But each time he gets behind the wheel, I see Sadie’s giant smile and kind pair of eyes hidden behind thick glasses. I see her awkward stride making her way up the aisle, or through the streets of our town. And I hear her plaintive plea – “Can you drive?”

And I whisper, “Look Sadie, we can drive.”

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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 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, Radio, Uncategorized

An Answer for the Pain

She approached tentatively from the back of the room where my team was leading a workshop about our special needs friendly VBS. When she reached me she excitedly said, “I didn’t know you had been a part of this VBS! I was in your special needs workshop this morning about inclusion. I’m just trying to get everything I can about special needs while I’m here.”

At that point I recognized her from the top of her head, which is all I had seen during my workshop because it was all that was visible as she frantically scrawled notes trying to take down every word I had said. We talked briefly about the VBS and how exciting the theme was. Then she posed an unusual question.

“Do you think I could do this with four special needs kids. Do you think we could save four with this?

Something in her eyes conveyed that she wasn’t using “save” in the salvific sense and something in my eyes revealed my confusion at the question. Immediately her eyes began to pool with tears. Taking her arm, I pulled her away from the crowd and said the words that are sure to reveal much more to me than any sales pitch – “tell me about your ministry.” As the tears coursed freely down her face she told me the following story.

She began by describing a familiar scenario. There was a special needs mom in her church with a 17-year-old son with autism. She talked about the struggles her ministry had seen this family endure for years, like how much trouble the mother had holding down a job because of the need to care for her son. She talked about the issues that mother had getting therapy paid for by the insurance company and of her battles securing the “least restrictive environment” in public school. She told of the personal stress and illness that mother had endured, as she seemed to be in a constant state of struggle.

Then her tears began to flow with such abandon that we found a more secluded place to finish her story. This children’s minister then told me how difficult it had been to engage the son at church. She admitted to feeling overwhelmed and frustrated at the prospect of either including him in the classroom or providing a quiet room where only he and a caregiver could be alone. She said that the relationship with the family was on again off again for years as the stresses of daily living would sometimes cause them to drift away from church attendance.

“We just didn’t know what to do,” she continued, “We wanted to help, we really did – but we just didn’t have the resources and the tools to know how to. But if we’d known what to do, it wouldn’t have happened. She was so desperate. We knew it. And this winter she took her son and killed him and then committed suicide.”

Overwhelmed by a familiar pain, I had nothing to say. In my silence, she continued to share but as she did a new resolve filled those tear filled eyes. “So that is why I’m trying to get all the information I can about this while I am here. We’ve identified four children in our church and community that we can minister to if we have the tools. So that is why I was wondering if you thought this VBS could help us save those four. We just want to save those four. We can’t lose any more families because we didn’t know what to do.

I spent lots of time with her that day and she stopped by the booth several times during the week. After explaining the benefits of the VBS resource, we talked about stress and grief as I willed all the information from my Pastoral Counseling class to the front of my brain. But the truth of the matter is that I understood not only the desperation of that ministry but also the hopelessness of that mother.

I know the desperation that comes with being at the end of your physical and emotional resources. I understand the depth of loneliness that can creep up unexpectedly from behind. I remember when invitations to birthday parties quit coming, as we began to slowly lose our peer group. And I know what it is like to try and visit the one place believers in Jesus go for hope and be told that the church isn’t equipped for children like yours.

And when there is no hope in Jesus, there is no hope at all.

The most startling part is that this is not an isolated incident. It happens in Lawrenceville, Georgia and Huntsville, Alabama. From Michigan to Illinois to Los Angeles, California the desperation is wide spread. Before you start a stinging reply, I realize there is more at play here than just autism or special needs and that these mothers had to be in a fragile mental state to take the lives of their children. But I humbly submit, from this side of the fragility, that they probably didn’t leave the hospital with that new born baby all those years ago thinking they would be in this position one day.

No one prepared them for twenty plus years of sleepless nights…or the divorce…or how little their family would understand the daily steeplechase their life would become. They received no formalized training before taking that child home that would even begin to equip them for the job ahead of them. And I call it a job because it is their – track with me here – full time job. It’s nearly impossible to find a job that will allow you to be at home when your special needs child is during their school years. After school programs and daycares balk at the prospect of adding special needs children to their roster, again stating that they are under-resourced and not equipped to manage these kids. And even if you can find work during those school years, at age 22 everything changes. Suddenly your child ages out of the school system and then you understand what under-resourced really means as you and your child stay home all day and neither of you can work or plan for a future.

But all is not lost. In the eyes of that bewildered children’s minister I find hope. Churches are beginning to recognize that:

  • 1 in 5 children are diagnosed with a disability
  • More than 11 million Americans need assistance with everyday activities because of a disability
  • Families with special needs children have a higher than average level of stress in the home
  • When a child with special needs is born into a marriage or a child becomes disabled through accident or disease, 4 out of 5 (80%) of those marriages end in divorce (90% when the disability is autism)
  • One study revealed that mothers of special needs children live, on average, 10 years less than mothers of comparable health because of the elevated cortisol levels in their system
  • And these families are often turned away from well-meaning churches full of earnest Christian people because they are uninformed, under-resourced and ill-equipped to minister to this population

This story, and many others like it, is why I do what I do. Seeking to resource the church is my primary goal. One of the best ways to do this is through relationship. At PURE Ministries we have created a network of churches that are doing ministry to these hurting families. Suddenly, churches don’t just have to figure it out as they go along anymore. They can have a relationship with another Body of Christ who can identify with that problem and tell a church how they approached ministering to that PURE person and their family. Additionally, more resources are provided and are under development at PURE Ministries at no cost for churches.

The Shaping Special Hearts Show on blogtalk radio is an effort to continue conversations about special needs ministry. Each guest brings with them years of ministry or special needs experience. We’ve discussed curriculum and classroom adaptation, ministering to families in crisis, making church events inclusive to special needs families, respite care and many other topics. These conversations are a FREE downloadable resource for churches and individuals seeking information and looking for relationships they can cultivate to equip themselves for ministry.

I believe Christ’s church can be an answer for the pain of this world – even the pain that renders mothers of PURE children without hope. And together, we can save those four and so many more.

Posted in Uncategorized

Serve Serve Serve

I just finished watching myself on our television. I will never – ever – reconcile myself to this. It was just a training video that I filmed last October for Standard Publishing’s Jungle Safari VBS. I was honored to be asked to participate not only in shooting this video, but Noah and I were included in the promotional materials because of my work on the team that wrote the materials. It was an honor to help pioneer a “special needs friendly” VBS curriculum for Standard, just as it is my honor to host their blogtalk radio program twice a month and write for Shaping Special Hearts Newsletter. But still, I become anxious just thinking about the implications of being touted as the “special needs expert.”

I’m so uncomfortable with it, in fact, that when asked to contribute Key Ministry’s blog as a guest blogger, my entire post was dedicated to defaming “the expert.” Read “Some Assembly But No Expertise Required” here. I’m still just Noah’s mom. I learned him and the other children with special needs in the ministry I was charged with and just made it work. Now, some years later, “special needs expert” follows my name in programs, videos and on promotional posters. It just doesn’t seem to make sense to me. And next week I’ll be even more perplexed, wandering around Disney’s Coronado Springs Convention Center realizing that people are there to hear me present materials about special needs ministry as “the expert.”

As I continued to take apart my presentation and put it back together for the sixth time (while fighting off an anxiety attack) I frantically opened my desk drawer to find two simple rubber bracelets that brought hope and perspective.

serveThese were issued to us last year at INCM’s Children’s Pastor’s Conference. They were simply a way to identify ourselves and our area of expertise so that if anyone saw us at a networking function they could easily identify what kind of ministry to children we are involved in. For example, my grey band reads “serve by example” designating me as a person in leadership. The blue band, more significantly, reads “serve special needs.”

Even though I received them last winter, I kept them in my desk drawer as a reminder of my greater mission. You may be wondering why I need to remind myself that I am seen as a leader or involved in ministry to people with special needs. But it isn’t that designation that prompted me to keep the bands. It is the first directive that has inspired me throughout the year – serve. This theme for CPC and INCM refreshed me not only during the conferences, but also throughout the year. They simply phrase it “serve  serve  serve.”

When I have been tempted to become completely overwhelmed by any project I am writing, I remind myself that my goal is to serve. Last year as I completed my thesis, I would wrap those bands around my wrist and ask God to use my feeble words to serve his Church. Before my first radio show, first radio show last spring, I donned my bracelets and uttered a prayer. As I have written for PURE Ministries and helped develop resources for our network, I absently run my thumb over the word serve and find peace and solace.

I’m not going to CPC next week to be the expert, I’m going to serve. I’ll serve Standard Publishing at their booth as I answer questions about the curriculum to which I contribute. I’m happy to serve alongside a team of editors, consultants and marketing managers with vision for equipping the church. I’ll serve cmconnect as I talk with fellow leaders about the possibility of interviewing them on the radio show this year. And most of all, I’ll serve the children’s ministry leaders who attend the conference. I don’t have to “wow them” with brilliance or come across as this world-class expert, I’m there to serve.

Once when Jesus’ disciples were arguing about being the greatest (maybe we can read being “experts in the kingdom”) he brought it back to this truth.

Sitting down, Jesus called the Twelve and said, “If anyone wants to be first, he must be the very last, and the servant of all.”

So I’ll serve gladly and be better for it. And I think it will feel like home.

Posted in Uncategorized

Bells Will Be Ringing

A post I wrote last year about Christmas and autism. I pray it blesses a parent who is enduring the holidays as many of us struggle to do.

Most people look forward to the holiday season with a kind of mania. In the sweltering heat of a late Georgia summer it isn’t uncommon to hear, “Only 120 shopping days until Christmas!” I’ve never enjoyed holiday shopping, but my son’s autism completely cured me of any interest in this phenomenon.

The extra lights, smells, and sounds of the holidays often proved to be a tipping point into complete hysteria for Noah when he was younger. Blinking lights made him squint his little eyes or cover them with his hands. Christmas carols blaring over the speakers in a store declaring that it was “the most wonderful time of the year” were offensive to his sensitive auditory system. Strong smells of cinnamon brooms and pine resulted in repetitive hand flapping and other self-stimulatory activities that do not go ignored by other shoppers. We once went to see a holiday light display at a large garden only to have Noah completely loose his balance and fall in a lily pond. I am convinced he couldn’t even retain his sense of balance because of all the sensory input. It only took a few holiday seasons to leave me feeling particularly “grinchy” about the entire affair.

But worst by far was the assault we would encounter on a simple trip to the grocery store during the holidays. As soon as I would open the car door, Noah would begin frantically chewing on his pacifier (or later a toy) in a fear response. I learned to register his panic and could immediately diagnose the source – that shrill, incessant ringing. Never decreasing in frequency, its high-pitched and piercing clanging grew as you approached the storefront. Some of you know that of which I speak – the Salvation Army bell.

I am convinced that these people do an excellent work, but for the life of me I searched high and low for stores to patronize at which they were absent. The assault brought on by the ringing of those bells caused Noah’s nervous system to be overloaded for hours. It simply was not worth anything I needed from a store if I had to deal with an anxious autistic child for several hours to obtain it.

In subsequent years, Noah would learn to integrate sights and smells into the tangled mass of schema his nervous system interprets. Visiting holiday light displays would become a favorite activity of his. He even learned to tolerate what we came to call the “Santa smell” so that he could visit that jolly old elf and present a handwritten list of toys he wanted for Christmas. But that bell continued to be despised by one and all, causing him to race through parking lots with hands over his ears to escape its alarming sound – until this year.

A few weeks ago we arrived at our neighborhood Kroger store to pick up a few items for supper. I knew the bell was there and had taken Noah by the shoulder as we got out of the car to insure he wouldn’t rapidly run through the parking lot to avoid the noise. Suddenly, Noah turned back to the car saying he had forgotten something. I assumed he was retrieving a toy to manipulate in order to self-soothe or even a set of the earplugs that I keep in the glove box now for such occasions. I saw him hastily shove items in his pocket and return to my side. After we traversed the parking lot he surprised me at the curb by speaking to the Salvation Army bell ringer. We have been working on social skills, but it seemed odd to me that Noah should seek out the perpetrator of our discomfort for a random meet-and-greet. I rushed him into the store and we began our shopping.

At he conclusion of our purchases, I began to maneuver the shopping cart through the automatic door only to have Noah race out in front of me. I hurriedly abandoned the cart to prevent him from dashing into on-coming traffic only to be brought up short by an astonishing sight.

The bell had stopped ringing and Noah was standing face to face with the Salvation Army volunteer. I did not know what he had said to begin the conversation but the response from volunteer was, “Well thank you young man.” And with that, Noah began to empty his pockets into the red cauldron. When Noah had returned to the car for what I assumed was an object to soothe himself, he had actually emptied all of the change from the console. When I arrived at the scene the volunteer said, “Your son just thanked me for my service. What a considerate young man!” I thought, “You have no idea what it took for him to approach you sir.”

Before we walked away Noah insisted on placing a sticker from a roll the lady at the cash register had given him on the apron of the volunteer. The man laughed and smiled and shook Noah’s hand. (If you happen upon a Salvation Army volunteer in the greater Cumming area with an “I’ve Gone Krogering” sticker on their apron you’ll know we’ve been there.) I was overwhelmed with questions as we walked through the parking lot.

Once settled in the car, I asked Noah about what he had done. He said, “That bell is terrible but he is working to be kind for others. That is what I want to be when I grow up. I want a job where I can be kind to others. Its like Jesus.” I suppose sometimes we have to be willing to allow ourselves to be assaulted by the overwhelming and uncomfortable in order to show the kindness Jesus calls us to.

Teachers and administrators at Noah’s school have told me that he displays an atypical amount of empathy for a child with his diagnosis. The word autism comes from the Greek word “autos” meaning “self.” And there is an element of this disease that gives Noah the appearance that he is preoccupied, primarily with himself and his feelings. What I have observed, however, is that this does not mean that Noah does not concern himself with the feelings of others. Rather, as Noah detects the circumstances and feelings of those around him his autism cues him to apply those feelings to himself. In this way, Noah experiences more of the feelings and emotions of those around him – not less. He has more empathy because everything that happens to those around him actually happens to him too.

I believe this is what prompted Noah to actively move beyond his comfort zone to participate in kindness. His life is more experiential than mine. From the excess of senses that his brain funnels through his nervous system to the way he encounters the hardship of others, Noah’s life is more textured and richer because autism gifts him in this way. Astonishingly, his empathy response prevails over the anxiety and fear triggers and Noah can be more like Jesus than I can.

Noah’s occupational goals now include Salvation Army Bell Ringer. God bless us, every one.

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

Where I’m writing now…

Some of you know that I entered a partnership with PURE Ministries this fall. I’m doing a lot of writing for their blog right now, so I wanted to steer some of you in that direction so that you can follow me there as well. Last week, Jason and I collaborated on an article about language for special needs ministry. Hope you enjoy!

 

What’s in a Name?

by Jason & Vangie Rodenbeck

One of the most frequent questions I (Vangie) am asked as I consult in the field of special needs ministry nationwide is, “What should we call it?” This is a product of our culture’s need to market goods and services, thus “branding” them so that the consumer is both targeted and reached. In a time when other ministries within a church might be named in a way which conveys the meaning behind the ministry but also attracts ministry “consumers,” special needs specific ministries cannot be left aside, lest they become anonymous and undistinguished service projects.

The greater problem inherent within this system is language itself. Just as the methods of branding and advertising are of recent advent to the Church and its ministries (new during the last twenty years) so are the implications of language usage. In an interview with Stanford University Press, philosopher Jacques Derrida said of using language responsibly “we are all mediators, translators.” What Derrida was saying is that our world and culture assign meaning to words and language regardless of the intent of the author of those words.

Language for use in the realm of special needs ministry is no different. Intrinsic in the use of words to describe a ministry of this nature, are certain attitudes and assumptions of our culture. Even when the intent is not to marginalize or “put down,” language can communicate a posture toward a people group. Already, I have entered the controversy with the use of the term “special needs” to differentiate this ministry from any other based on a physical, emotional or intellectual difference rather than strength…

Follow this link to read the rest of the thoughts Jason and I put together on appropriate language for PURE ministry here.

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.

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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.