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 The Autism Gospel

Finding Grace at the Gym

Just a few weeks ago our life was made more complicated. In addition to the challenges that autism already presents, Noah’s pediatrician gently let us know that he was at risk for diabetes. This meant a couple of things were going to need to change – more exercise and better diet. We loathe change.

So we’ve been making small changes. We taught Noah how to ride a bike. (Which is fodder for an entire separate blog post.)bike He now has a myfitnesspal account, as well as a fitbit, to help him monitor his calorie intake and activity. The visual component of both sites really helped him understand our goals. We are going to the gym and hitting the treadmill every day. As it turns out, I found grace there today.

Teaching Noah how to operate the treadmill wasn’t the most difficult thing I’ve ever taught him how to do. He took to it pretty well. He likes gadgets and electronics, so it was instantly easy for him to catch on to the general operation of the device. But there are “side-effects” to Noah’s efficiency.

For instance, the faster he walks the louder he vocalizes. Typically this comes out as an “oooouuuuuuu” sound. This is accompanied by either hand wringing or flapping rapidly to match his pace. As you might imagine, we have encountered stares and chuckles from the other patrons of our local rec center.

I am long accustomed to this kind of thing. Most of the time, unless we are REALLY disrupting others, I quietly cue Noah to be conscious of his behaviors and then let them go. Because the truth of the matter is, he can’t help it. Noah cannot be “un-autistic” for even one moment. And while he is processing a new skill, it is completely unfair to ask him to monitor himself even more than he usually does for the comfort of the people around us. I figured, “We paid our dues like everyone else here. We are fighting for his health here. If he has got to flap, then he can flap and ‘ooooooouuuuu’ all he needs to. I refuse to be ashamed.”

gymToday, I took my place directly behind him, as usual, on an elliptical trainer. I can monitor his movements there, as well as the behaviors of the other patrons of the gym. He was doing his thing, warming up at about 3.0 and then speeding up to a slow jog when the vocalizations started. It was fairly crowded this morning and I immediately saw people begin to stare.

 

And then, we were the recipients of amazing grace.

One older gentleman was watching a little closer than the rest. I noticed him get up from his position on the exercise bike and begin talking to the people around him. He was smiling and gently nodding in Noah’s direction. Each person he talked to smiled in return and nodded their heads. After he had talked to every person in the exercise room, he made his way in my direction. Taking my ear buds out, I readied myself to give our standard Autism 101 explanation.

With a smile he approached the elliptical trainer I was killing myself upon and said, “I’ve noticed your boy.” Before I could launch into my 3-minute spiel, he continued

He seems like a good boy. I could hear him making some sounds and turning his wrists about. It made me smile because I’ve got a seventeen-year-old grandson just like him. Autism has been a gift for our family. But I know it’s hard too. I hope you don’t mind that I took the liberty of letting everyone here know what a good job he was doing despite his limitations.

He went on to tell me that he understood how exhausting it was to be a caregiver. He explained that he had just recently lost his wife of 52 years to Alzheimer’s and that he could sympathize with constantly feeling the burden of explaining behaviors that seemed odd to the world. When I shared about Noah’s health concerns and why we are making such an effort to be at the gym, he told me that I was an “outstanding mother.” Then he asked permission to talk to Noah. When he did, he clipped the emergency strap to Noah’s shirt and patted him on the hand with a smile.

It has been over 10 years since our diagnosis and I’ve never had someone intervene on our behalf like this. It’s only been a few hours and I’m beginning to wonder if he was just an angel or apparition caused by elliptical-trainer-exhaustion. But it is possible that he was just being kind and extending grace where he saw need. Operating out of a small amount of knowledge about autism and his own experience as a caregiver, he opened his heart to dispense a few kind words on behalf of Noah and I. It was a small thing – but not to us.

And this tired Mom, who doesn’t have nearly all of the answers that she needs, will be eternally grateful.

Posted in Radio

Shaping Special Hearts: Special Needs VBS can Start Small 05/20 by CMConnect | Religion Podcasts

Sometimes we are afraid that is we can’t start some thing BIG we can’t start it at all. What’s that phrase? Go Big or Go Home….yeah, that is stupid. Listen to this amazing interview with Judi Hangen Cooper from King of Kings Lutheran Church in Fairfax, VA to hear how big a difference something small can make!!

 

Shaping Special Hearts: Special Needs VBS can Start Small 05/20 by CMConnect | Religion Podcasts.

Posted in Radio

Shaping Special Hearts: Making Buddies

I can see the look of anxiety that comes across a person’s face when I mention starting a “Buddy System” at their church to enable people with special needs to attend. They think a Buddy is a thousand things it is not. All being a Buddy with Noah entails is the ability to put together Legos or play Wii.

Listen in as Jacque Daniel from ConnectAbility and I unpack how to develop a Buddy System.

 

Shaping Special Hearts 04/22 by CMConnect | Religion Podcasts.

Posted in Uncategorized

Ways to Make Your Church Inclusive on Easter

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.

Ways to Make Your Church Inclusive on Easter.

Posted in Uncategorized

Shaping Special Hearts 04/08 by CMConnect | Religion Podcasts

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.

Shaping Special Hearts 04/08 by CMConnect | Religion Podcasts.

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 Radio

Shaping Special Hearts: Ministry to Special Needs Parents (Part 3) 03/25 by CMConnect | Religion Podcasts

Becoming a parent changes a lot of things about your life. Becoming a special needs parent changes who you are. Your dreams probably won’t stay the same. Any goals you had for life are altered drastically. In the words of Jolele Philo, you begin a “different dream.”

I’m very excited to interview Joe and Cindi Ferrini today about their journey as the parents of a child with special needs. Joe is lending a very valuable “dad perspective” that I’m so thrilled to share. Listen in or forward this to someone who is in friendship, kinship or ministry to a family affected by disability.

 

Shaping Special Hearts: Ministry to Special Needs Parents (Part 3) 03/25 by CMConnect | Religion Podcasts.