Posted in PURE Ministry

Making Lent and Easter Meaningful for Persons with Disabilities

More great information from my friends at CLC Network about welcoming people of all abilities this Easter season!

Making Us Whole

Graphic: Making Lent and Easter Meaningful for Persons with DisabilitiesPart One: Get to Know the Individual

Easter and the Lenten season are a time to reflect on the sacrificial and redeeming love of Christ. For some individuals, however, this season may be confusing, unimportant, and even scary. How can you help make this a meaningful time of reflection and celebration for a person with a disability?

Accessible Gospel, Inclusive WorshipThe most important place to begin is by getting to know the individual’s strengths and areas of struggle. Each person — regardless of their level of ability or disability — is handcrafted by God with gifts and areas of interest, as well as areas where they need the assistance and grace of others. As you consider this individual, it’s important to ask: what CAN this individual do? When you focus on what the person enjoys, it’s easier to think of the tools, approach and opportunities to include in that environment where you can…

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Posted in PURE Ministry

Inviting Them to the Conversation

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I’ve been having the same conversation with parent after parent for ten long years now. Since my son’s diagnosis and the inauguration of my journey as minister to children with special needs, this paralyzing question has been sent to me via email, whispered through tears, and even shouted in anger by many terrified parents. They all want to know the same thing:

Will my child ever really understand the gospel message?

Can they ever grasp the love of God?

Is it possible that they could ever know Jesus?

At some point during their pregnancy, and perhaps even their child’s infancy, these questions may not have frightened them so much. But then the day came when they realized that their child wouldn’t be learning the way others would learn. It doesn’t Accessible-Gospel_webtake long for Christian families to come to the place where they want to access their child’s capacity to learn, know and understand the greatest story ever told – the Gospel message. In her new book, Accessible Gospel, Inclusive Worship, a new resource from Barbara J. Newman and CLC Network answers this question unequivocally with a resounding “Yes!” While her credentials give her a voice to speak to any number of topics from specific disability interventions (such as Autism or Down Syndrome) to classroom strategies for general behavior management, she says this topic is “the reason for every other topic on my speaking list.” The underlying assumption of this book is that everything is about making it possible for people to connect with Christ – regardless of their ability or disability. Newman walks readers step-by-step through a process that begins with finding common ground with every learner. From this point, she explains the importance of identifying how a person takes in information in order to most clearly communicate the gospel message to them personally. Filled with examples of real life stories from Newman’s ministry experiences, the pages come to life as the message the gospel is told over and over again in many different ways. Perhaps one of the greatest contributions Accessible Gospel, Inclusive Worship makes is its re-framing of our concept of worship as a whole. Newman makes the point that creating an accessible worship environment is about so much more than wheelchair ramps and bathrooms that are handicap accessible. Newman writes Most of our worship settings can be described as a conversation. While some of them are corporate and others are individual, we enter into a place where we speak to God and allow God to speak to our lives. For some individuals with disabilities, the tools we use as part of that conversation might be a bit different from some of the traditional tools. For example, if we use only spoken words set to music for the part of the conversation that says “I love you, God,” then we have left someone out who has no spoken words. How can we make that part of our conversation with God inclusive each worshiper? Using the concept of Vertical Habits, developed by the Calvin Institute of Christian Worship, Newman goes on to examine worship as expressions by which we tell God “I love you,” “I’m sorry,” and “I’m listening,” just to name a few. By reframing worship in this light, Newman is able to invite people of all abilities into a conversation with the God who made them in his image. Inclusive worship affects so much more than just the person with different abilities. This person is usually attached to a family or caregivers who are also thirsty for an opportunity to worship. Accessible Gospel, Inclusive Worship gives churches the tools to  invite everyone to worship. Hear me interview Barbara J. Newman on Shaping Special Hearts here. welcome everyone into the house of God. Barbara Newman given us the tools to invite everyone to worship.

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 PURE Ministry

Pure Post: Happy Trails to You

Happy Trails to You

 

How good and pleasant it is when God’s people live together in unity![1]

 

 

The invitation to attend came quite unexpectedly. “Oh, you don’t want to miss this!” they exclaimed. Unable to resist, I arranged to make my way to First Baptist Church of Tucker for their annual “Special Needs Ministry Sunday.” Each year on this designated Sunday, the ministry devoted to people with differing abilities leads the congregation in songs of worship, offering and prayer.

 

I have been to all kinds of worship services. From High-Church liturgy to church camp vespers, I have had the opportunity to worship in many settings representative of many styles of sermon and song. But I have never encountered any worship setting quite as rapturous as what I would participate in on that day.

 

The excitement was palpable upon entering the beautiful sanctuary of this church that was celebrating its 120th year. When the ushers who greeted me at the door learned that I had come especially to attend this service because of its leadership, I was personally escorted to a pew of honor where I could have an unobstructed view. The choir loft was already filled with PURE people and their caregivers, who were eagerly awaiting the start of the day’s service.

 

After a brief welcome and responsive reading, ending with the instruction from Psalm 133:1, we sang a few songs of praise in rapid succession. Appropriately, we confirmed “How Good and Pleasant” it is when God’s people can dwell together in unity. As if to answer how this can be among a people so diverse, the opening strains of “Jesus Messiah” began to play.

 

I gazed from the screen where the words were being projected to see many members of this PURE choir using American Sign Language to tell the story in song of a messiah who was the “…name above all names…Lord of all.” By the time we reached the bridge, each PURE person was intoning with all his or her might “…all our hope in you, all our hope is in you. All the glory to you God, the Light of the World!” Tears began to course down my cheeks that would not stop until the Benediction.

Read more about this PURE worship experience here.


[1] The Holy Bible: Today’s New International Version. (Grand Rapids, MI: Zondervan, 2005), Ps 133:1.

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 PURE Ministry

PURE Post…Will There Be Buddies?

a story about kingdom friendship that I wrote for PURE Ministries

 

There was a buzz in the air as volunteers received their assignments for the evening. As a visitor, I was observing from a safe distance when I heard a child ask a question that would re-frame my thinking for many days to come. In a loud and breathless voice she asked, “Will there be lots of ‘Buddies’ here tonight?”

She was a PURE child coming to participate in the monthly respite ministry at Blackshear Place Baptist Church in Flowery Branch, Georgia. While I listened to a volunteer greet her and assure her that, yes, there would be plenty of “Buddies” here this evening, I couldn’t help but marvel at her question.

At first, her question didn’t make sense to me. Because this was my first visit to a respite event, I was intent on seeing the schedule and organization of such an occasion. My mind was readied to make a list of administrative tasks required to accomplish such an event. I was ready to do the mental gymnastics necessary to generate a simple budget for this kind of ministry. My notebook and pen were prepared to record basic supplies essential for an event that I was sure would be overwhelming in scope.

Still, her simple question took me by surprise. I assumed she would want to talk about the activities she would be doing.  But, she didn’t.  Her primary interest wasn’t which activities she would encounter that evening or whether or not her favorite interest would be represented. She simply wanted to know who was coming to serve that evening. My task-oriented mind had immediately jumped to the issue of recruiting for such a ministry emphasis. Focusing on all the special training this must require, I was sure that would be the crux of the information that would fill my notebook and calm my questioning mind. Little did I know that at the end of the night, I would leave with scarcely a half page of notes yet with every question I could possibly have answered in full.

Read more about this amazing ministry by following this link the PURE Ministries blog.