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

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

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

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

 

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

Posted in Uncategorized

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

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

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

 

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

Posted in Uncategorized

“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.

Posted in Uncategorized

Roses Are Red

I have a good friend who has taught me more about empathy and coming alongside someone in the fellowship of suffering than anyone else. Her name is Gillian.

Image

 I’ve written about Gillian before, about how she learned to talk speaking the name of Jesus before any other word and about the honor I had to baptize her. (Maybe I will repost those in the following days so that you can get to know those stories if you don’t already.) If you subscribe to Standard Publishing’s Christian Standard Magazine or HeartShaper Sunday School Curriculum, you can see Gillian featured in an advertisement. She is featured because she is a wonderful, God fearing little girl who happens to be autistic.

 

Last night Gillian, her parents, my husband and I went to hear Temple Grandin lecture about autism. Dr. Grandin was born in 1947, at a time when it was common for children with autism-like symptoms to be diagnosed as simply “brain damaged.” Gillian wanted to go and see someone who has succeeded and not let autism overcome her strengths. Part of me just wanted to watch Gillian.

 

I know that she heard every word Dr. Grandin said about autism and strengths and the latent possibilities of this neurologically diverse population. With her usual intensity, she watched and recorded what she heard with her amazing brain. She uses the same concentration on all her passions – horses, animals in general, and Jesus.

 

Many times Gillian has interrupted my lesson with an insight that left me speechless. Her way of seeing and feeling things is a gift. And she feels deeply. So for me last evening, as much as Temple Grandin was the featured author and lecturer, Gillian was also an instructor. You see, Gillian feels deeply that she has something to offer the world. She isn’t sure what it is yet and she doesn’t know how to accomplish it, but she knows it is there and she knows she doesn’t want autism to prevent her from sharing her gift.

 

Her tremendous insights in areas of empathy and feeling are what Gillian teaches me. So often I am more than willing to let my weaknesses prompt me to “hide my light under a bushel.” But not Gilly. No, she is determined not to let fear and sensory overload stop her from being who God intends her to be. She has often asked what it means that the publishing company features her picture, wondering if she has some responsibility to fulfill. We keep telling her that she only needs to be herself because that is what has inspired so many people.

 

As for me, I don’t think I will ever stop learning from Gillian. Last winter when my son was in the hospital, he received this note from her.Image

 

From deep inside autism, Gillian reached out to another who was struggling against the same condition. There was no part of her that was ashamed of their mutual condition – no part that even felt sorry for Noah. Instead Gillian elected to view it as her responsibility to use her disability as a bridge to reach another saying, “we are disabled together.”

 

Oh how I wish I had more friends like Gillian! I wish the church was full of Gillians who would reach out from their own condition to another and say “I am more like you than you think.” And I wish I felt the responsibility to reach out in empathy and solidarity as Gillian does.

 

Some might say that Gillian lacks the social inhibitions that dictate she more appropriately represent the autism that she and my son share. If so, I believe that lack of social grace is truly a grace in itself because it allows her to reach beyond herself with wild abandon.

 

Last night, she stood in line for almost an hour to have Dr. Grandin sign a book about autism heroes called Different Like Me. She reads this book all the time for inspiration for ways that she can overcome the many difficulties she faces every day. Something in me wanted to have Gillian sign it as well, for she is a hero of mine.

 

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Gillian, I know your Mommy is reading this to you. You want to know what it means that you are my hero. You want to know what you have to do – what your responsibility is. With all my heart I want you to know that all you have to do is be who God made you to be. You are created in his image and he made you perfectly. When I look at you, I see God. And that is a gift to this world.

Special Needs at VBS

Special Needs at VBS

Sometimes a chance comes along to do something you never thought possible. I am a part of a chance like that now. Standard Publishing has contracted me to write lesson adaptations and instruction on how to include children with special needs at VBS 2014! This is an amazing opportunity and I am so thankful for the opportunity to share ways to make this possible. Check out this link for Jungle Safari 2014: Where kids explore the character of God. Next year, no one gets left behind on the safari to learn about how God is our Creator, Provider, Protector, Savior and King!!