via I am a pallet
Source: The mind of a bird
I was once That man who knew, Being certain of what is, How it happened, And what should be. I spoke with authority About things I had Never studied. I espoused with certitude Beliefs which had no …
Source: Truth and sandcastles
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.
I was reminded today of how lost Noah and I would be if it weren’t for the people who have come alongside us and forged relationships despite the difficulties our autism presents. This conversation with Marie Kuck from Nathaniel’s Hope really expresses the simplicity of deciding to be a buddy to someone affected by disability.
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. 
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.
 The Holy Bible: New International Version (Grand Rapids, MI: Zondervan, 1984), 2 Co 4:16–18.
I can’t tell you how excited I am about tomorrow’s show with special guest, Barbara Dittrich. We are continuing a series of conversations about how to support the parent of a child with special needs. These shows were designed to meet the needs I hear ministry leaders expressing when they ask: How can I communicate with this special needs mom/dad? Why aren’t they more forthcoming about their struggles? What are their emotional and spiritual needs?
This show is going to go a long way to answering those very questions.
Ministering to the emotional, spiritual, & physical needs of anyone is a tall order. When special needs parents are those people they can appear, in the words of our guest Barb Dittrich, like a “big ol’ bundle of need.” Join us as we discuss practical, yet meaningful ministry to these parents.
Barbara Dittrich is a nationally published author and speaker with a special heart for those raising children with chronic disorders, diff-abilities, and special needs. Wife to her beloved Steve for over 20 years, they raise their three children in beautiful Southeastern Wisconsin. With diagnoses including hemophilia, severe allergies, ADHD, and autism spectrum disorder in the household, Barbara faces life’s challenges with humor and compassion. Foundress of Snappin’ Ministries Inc, she energetically shares with others what God has hidden in her heart as she walks in devotion and obedience to Him.
If you can’t join us live, be sure to listen later to this or other Shaping Special Heartsshows in the archive at www.blogtalkradio.com/cmconnect.
Join Vangie and special guest Kelli Anderson as they discuss “Sticking with Special Needs Parents.” Hear an insider’s perspective about what can make parents of children with special needs lack trust in people – even the people they desperately want to trust! Hear strategies for meaningful communication, key elements in ministry to parents, and what every pastor should know about ministry to this growing population.
A lifelong Christian and mother of three children (two with Asperger’s Syndrome), Kelli has also published her first book about her experience in Divine Duct Tape and is a regularly featured writer for an award-winning daily blog for special needs parents, Not Alone. She also produces a weekly podcast, Divine Duct Tape, and works in special needs ministry through her online forum and Masterpiece Ministries at First Baptist Church of Geneva.
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.
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.
These 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.