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 Radio

Shaping Special Hearts: Family in Crisis 11/12 by CMConnect | Religion Podcasts

Shaping Special Hearts: Family in Crisis 11/12 by CMConnect | Religion Podcasts.

How can we pratically minister to families of special needs children in the midst of crisis? What kinds of emotional and physical supports can we offer families in times of hospitalization, illness and in the face of everyday challenges? Join Vangie Rodenbeck and her special guests Adeye Salem & Tina Kacirek. Both bloggers and moms of special needs children, Tina and Adeye have layers of rich experience that will empower you in your ministry to families in transition and crisis.

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:)