Posted in Living Peacefully

Making Small Talk & Neighbors

 

They pulled in late on a September Saturday afternoon. The house next door had been vacant for months, and we were glad to see a truck roll up the steep driveway that is a twin to our own. It was our energetic Labrador that made introductions, immediately tearing across the short space between houses and lapping the truck in joyful circles. My husband apologetically introduced himself (and Maxine) and welcomed them to our neighborhood.

It was apparent from the dress of the mother and older girls that this family was Middle Eastern. In friendly, broken English the father introduced himself, his wife and children, and shook Jason’s hand. It was a small start to what would become an intentional relationship. It was just small talk.

A few days later, Jason noticed them piling trash at the street. Since we live outside the city limits, we have to pay for a trash service. Day after day, they moved trash from the street to their home, not understanding why it wasn’t being picked up. Jason went over, motioning and mimicking through the language barrier until he made sure they understood to call the number on our trashcan for service.

When I asked Jason how the conversation went he replied, “I just don’t want him to think we’re those kind of people.” He wanted them to know we cared, but the language barrier was so great and our conversation so small.

We noticed the mother or father walking the youngest child, who is around nine or ten, to the bus stop each morning. They would watch furtively over their shoulder and stand several yards away from the other children who were waiting for the same bus. Again, in the afternoon, one of them would wait at the stop – within eyesight of their house – to retrieve her.

It wasn’t until around Halloween that we realized their apprehension was for good reason. While working in our garage one day, I noticed some boys headed up their driveway. I thought it was unusual, but just figured they were visiting the youngest girl. Soon, I saw the boys run across my yard as if the devil himself was after them. This happened a few more times during November, until one day around Thanksgiving I heard one of the teenaged daughters step onto the porch and scream until the boys were out of sight. I ran into the yard to help, but she was distraught and the boys were gone. That day, Jason and I resolved to be the kind of neighbors they needed.

Months passed with only waves and smiles across our yards – but we were far more intentional about it then we’ve ever been before with other neighbors. Then one afternoon my doorbell began frantically ringing. I opened it to find the youngest daughter, distraught and in tears. She’d gotten off the bus to find no one at home and couldn’t get in the house. She wouldn’t come in, but did accept the use of my cell phone. She called to learn that her parents would be some soon and had gotten stuck in traffic. We sat on my front steps and talked about her school, riding the bus, and what she had for lunch at school. Just small talk until her parents arrived.

The next time her parents were gone when she got home, she didn’t ask to use the phone but just sat and talked with me. I told her that I was glad she came to our house when she needed help. She replied, “My parents say your house is a safe place if I have trouble.” I was glad our small talk was working, but I wasn’t sure if they really understood just how much we were glad they were our neighbors.

Then we got the sign.

We put out our sign on a Sunday afternoon with little fanfare. That evening we heard some noise in the yard and looked out to find our neighbors and many of their friends taking pictures of our sign with their phones. Honestly, we just weren’t sure what to think about their interest.

When the doorbell rang the next afternoon, I assumed my friend had gotten off the bus to an empty house once again. When I opened the door, I found two of the daughterstreats with radiant smiles. With arms extended they offered me homemade pastries and this explanation, “We made this for you to say thank you for the sign. We want you to know what it means for our family that you are telling the neighborhood you are happy we live here. These are from Egypt, our home. We made so you know we are glad to be neighbors. We have never seen a sign like this. Why do you have it?”

I told her that we belong to a peace church and that many of us were putting these signs in our yards. When she asked what I meant by peace church, I went on to tell her that we believed in truly loving our neighbors in word and deed. Then, I told them what we believe following Jesus means. They are Muslim, but they smiled and said, “This is what our world needs now.”

We continue to make small talk. Last weekend, they asked us to get their mail while they are out of town in May – at least we think that is what they said.

We’ve made small talk. It’s a small sign. These have been mustard seed moments. Loving our neighbor in small ways that make a big difference, at least on our street.

Advertisements
Posted in Living Peacefully, The Autism Gospel

Healed on the Sabbath

10 Now he was teaching in one of the synagogues on the sabbath. 11 And there was a woman who had had a spirit of infirmity for eighteen years; she was bent over and could not fully straighten herself. 12 And when Jesus saw her, he called her and said to her, “Woman, you are freed from your infirmity.” 13 And he laid his hands upon her, and immediately she was made straight, and she praised God. 14 But the ruler of the synagogue, indignant because Jesus had healed on the sabbath, said to the people, “There are six days on which work ought to be done; come on those days and be healed, and not on the sabbath day.” 15 Then the Lord answered him, “You hypocrites! Does not each of you on the sabbath untie his ox or his ass from the manger, and lead it away to water it?16 And ought not this woman, a daughter of Abraham whom Satan bound for eighteen years, be loosed from this bond on the sabbath day?”17 As he said this, all his adversaries were put to shame; and all the people rejoiced at all the glorious things that were done by him. [1]

 

Part of my son’s diagnostic story is that I was once told he would never read, write, or speak. When I report this at IEP meetings, educators often have one of two reactions. Often they smirk and comment on the fallacy of shortsighted clinicians who shut doors too quickly. Others smile sympathetically in realization of just how much work it must have taken to get where we are today.

Today he reads. He writes. He speaks.

For as long as we have been doing it now, it still never gets old to hear him read aloud, or better still to hear him read something that he himself has written. I think this is a small gift I receive for all the tough nights along the way. But nothing – absolutely nothing – thrills my soul like hearing him read God’s Word during our Sunday worship services.

sabbath1
Printing his scripture out in a dyslexic friendly font makes him feel more comfortable.

Our church customarily invites Noah to be a part of our worship in this way. This week his text seemed particularly poignant. Luke records an encounter on the Sabbath Day between Jesus and a woman with a long-term illness. While the thrust of the passage is Jesus’ defense of healing this woman on the Sabbath, it was other wording in this passage that caught my ear when read in my son’s voice.

“Woman, you are freed from your infirmity.”

Other interpretations of the Greek ἀπολέλυσαι (apolelysai) read “removed,” instead of healed or freed. In the place of infirmity of illness, a near definition of ἀσθενείας (astheneias) is “weakness” or “limitation.” This could easily read “you are removed from your limitation.”

You are removed from your limitation. And in that there is healing.

20160821_102818
Noah starts his Sundays with a walk around the farm where he greets the animals – especially Smudge the Pig.

I feel that we are removed from our limitations each time our church seeks to include Noah in leading our service. Because the truth of it is, his reading isn’t polished at all. His fluency is so choppy that you can’t really follow along. His speech impediment makes understanding him difficult as well. Our limitations – disability, illness, weakness – are still present. But for just a little while, he is removed from them.

And we are healed on the Sabbath.

 

[1] The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Lk 13:10–17.

Posted in PURE Ministry

Inviting Them to the Conversation

newman-review-680x468

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 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 Uncategorized

The Autism Gospel – Hope for Misfit Toys

A post a wrote a few years ago about Noah’s view on a holiday classic…enjoy!

PhotoGrid_1386859507875

I’ve been doing “research” for a talk I’m giving next month. It’s a holiday gathering so the theme is preset, and I’ve got a pretty good idea where I’m going with it but I still like to research thoroughly. In doing my research, Noah and I have been watching some of the classic holiday movies. Watching a movie with Noah can be a strenuous experience. You have to be prepared for a lot of stopping and rewinding so that he can memorize a line in order to quote it perfectly 2 months later. As far as Noah is concerned, on the 8th day God made TiVo.

We were watching Rudolph the Red Nosed Reindeer. As we began Noah had several comments to make about how the characters looked, or how much he loves Christmas and how excited he is that “its almost here”. But his comments about Rudolph gave me cause to muse. It wasn’t very far into the plot before Noah grabbed the remote and, instead of rewinding, paused the dvd and said, “Now that is my favorite character – Hermie the Elf.”

I replied, “What do you like about Hermie so much?” Noah answered, “Well, we both have kind of yellow hair and also, Hermie is happy and sad at the same time.” When I asked how it is possible to be happy and sad at the same time, Noah said, “Well, you see Mom, he is a misfit. He is happy because he wants to be a dentist, but sad because no one understands him. So he is happy and sad at the same time.” Not passing up on a “Noah moment” I asked, “Are you happy and sad at the same time?” Noah answered, “Yes I am, it just depends on how I open my eyes.” While I pondered the weirdness of that statement, he began the video again.

Soon, Rudolph and Hermie have teamed up and run away in an effort to “be independent together”. They jump on an iceberg and head out for points unknown and arrive at The Island of Misfit Toys. At this point, Noah stops the video again and says, “Mom pay attention, this is the important part.” (At this point, I also grabbed my laptop.) They are greeted first by the sentry who appears to be a Jack-in-the-Box, but informs them that he is actually a Charlie-in-the-Box. This is why he is a misfit – because, “…no child wants to play with a Charlie-in-the-Box.” Soon many other toys that have peculiar traits greet them.

“How would you like to be a spotted elephant, or a Choo-Choo with square wheels on its caboose, or a bird that can’t fly but swims?” they are asked by the toys. When Hermie and Rudolph inquire how they got to the island they answer that the king of the island, King Moonraiser, searches for toys that no one wants and brings them to live on the island until someone wants them. Noah turns to me and says, “See, the king has open eyes.”

Now its quite possible that Noah was just discussing the finer points of 1964 made for tv animation, but somehow I don’t think so. You see, it’s a story of Hope. Advent is a season of preparation for the coming of Christ and a part of that larger story is Hope. In fact, it is woven all the way through scripture. In this story, the toys on the island have cause for Hope because they have a King that sought them out when no one else wanted them. And more than that, he provides for them a safe place of respite until they are wanted again. Please don’t miss the point – the King searched for them. This is the best part of the Hope: because the King had ‘open eyes’ no toy – no matter how big a misfit – went unredeemed. All toys are of value to the King, no matter how broken.

Noah changed the direction of my research. He indicated we can be happy or sad about who we are, it just depends on how we “open” our eyes. I rolled that over again and again in my brain all evening. I finally gave up around 4am and grabbed my Bible and began reading. Here are a few passages I was led to:

 For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to him. 

2 Chronicles 16:9

I praise God for the Hope I can find because I have a King that came looking for me. Unwilling to allow me to remain a misplaced, misfit – he is redeeming the parts of me that he can work with and discarding the parts that he can’t. I’ve got Hope.

 Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Hebrews 12:2

I thank God for the Hope of the season that comes in the form of a source on which to fix my eyes. I’m a misfit, but he isn’t done with me yet. I am actually beginning to suspect that we misfits might be his favorites. Maybe it’s easier to show us how to direct our gaze. After all, it’s all in how we choose to open or focus our eyes. I’ve got Hope.

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.  2 Cor. 4:18

I thank God for embracing the misfits and then using us in a wonderful way to show his glory. We have a marvelous Hope because we open our eyes to the eternal and not only the temporal. We’ve got Hope.

To all the misfit toys out there, Noah says there is Hope for us yet…it just depends on how we open our eyes.

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 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 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 Uncategorized

The Autism Gospel – Rejection & Fortune Cookies

In preparing to write a new series about acceptance, I thought I’d repost this selection from my previous blog. It was written 2 years ago this Spring…

 

Noah and I went out to eat this week. It was really just something to break the monotony. Actually, we were a little down and I thought it might cheer us up. He loves to eat in restaurants, especially new ones. Yeah, I’ve got one of the only autistic people in the world who likes to travel to new places and do new things. So I figured it would be just the pick-me-up we needed to push through our week. He loves Chinese, mainly chicken wings and rice, so we tried a new place.

It had been a long day for us both. I was glad not to be cooking and just to spend some time talking to Noah. But he wasn’t even close to being in a conversational frame of mind. I could tell he was tired because he was flapping with one hand and holding an object close to his face with the other. When he stims like this, it is a glaringly obvious sign that he is physically and neurologically over-taxed. I corrected him twice and he responded with his typical, “Sorry Mom. I’ll try harder.” After a few times of that I just thought, “Enough correcting him tonight…I’m tired too. Flap if ya gotta flap!”

It was a little early for the dinner crowd, so we had most of the dining room to ourselves at first. But just after we ordered our meal, a well-dressed couple was escorted to the table beside ours. Just as the lady sat down, Noah flapped. Then I heard it – a gasp-grunt. Out of the corner of my eye I saw her flag down the hostess. She said, purposefully loud enough for me to hear in an otherwise quiet dining room, “We can’t sit here. We’ll have to be moved.” My head spun around on my neck because I thought there must be a leak in the ceiling over her table or rat droppings or something to disturb her so. But when I turned around, and met her sneer, I realized that her problem was us. Noah continued to flap (this whole exchange lasted maybe 45 seconds) so he missed her subtle eye roll in my direction.

I felt like I had been slapped hard across the face. Now, I’m not completely unaware when we are attracting attention to ourselves. I work pretty hard at making Noah aware of his behaviors and try teaching him to curtail the completely unacceptable things he might be prone to do. So I can honestly say that, as disturbing behaviors go, I’ve seen lots of “normal” kids behave worse in a restaurant. But this wasn’t about being around children in general, because they were sat by a family of 4 in the far corner of the room. No, it was about our “differentness.”

This has happened before. But it was a long time ago. I had forgotten the painful sting this brand of rejection leaves. Honestly, I could barely breathe. The waitress, who had seen the whole thing unfold, was quietly sympathetic. She spoke kinder than was necessary to Noah. He, of course, returned her kindness with over-the-top manners he must’ve picked up from watching re-runs of Father Knows Best.  He said things like, “thank you for being so sweet to us” and “I hope you aren’t tired after work tonight” and “aren’t you kind.” The more he tried to show thanks for simple kindness, the more sick to my stomach I became. When I knew she would watch him while I went to the restroom, I quietly excused myself. Once safely in a stall, I cried my eyes out. After washing my face in frigid water to get the swelling down, I returned to the table.

Just when I thought the worst was over, I felt someone else staring. From over the top of the partition, I saw the hostess catching a peek. As if on cue, Noah began flapping again. I sighed and put my head in my hands. When I looked up, I saw the hostess escorting another couple to the other side of the restaurant. It was now the dinner rush. I watched family after family come in only to be seated as far as possible from Noah and I. We had been quarantined.

At some point Noah noticed because he glanced around and said with a grin, “Well, I guess it’s just us huh? Kind of romantic.” I smiled a watery smile and choked down a bite of dinner. Its funny how even the moistest of food can turn to sawdust in your mouth. But then Noah began to tune into the worst thing he possibly could have – me. He read my distress and responded with, “Mom, I love you.” I answered that I loved him too. More than anything. No less than ten times during our meal, Noah told me that he loved me – more than anything.

At this point, you may be wondering why I collapsed instead of responding in my  usual snarky flesh. All I can say is: Sometimes, even the feistiest of us loose our snark under the strain. It did occur to me later that I could’ve hollered across the room to the first woman, “Hey lady! Did that lump you came in here with tell you he loved you during dinner? Because this kid that wasn’t good enough for you told me about ten times!” I thought of TONS of horrible things I could have said. Luckily, I was just too beaten down to come up with them at the time. But then I had a thought that I’ve been prompted to consider through some reading and preaching I’ve been listening to.

What would Jesus have done? Not WWJD – “What would Jesus Do?” But, what would Jesus have done if he were me living my life in that very moment. The process of trying to picture Jesus as the parent of an autistic child proved too much for me that night. But I did wonder this: What would Jesus have done if he had just happened into that restaurant that very night and seen everything unfold? Believe me, I was praying desperately to feel him at that table. The rejection was so, well, violent.

Normally we think of violence as a physical act of aggression. But I think I experienced a subtler and deadly form of violence, and perhaps one more common than even physical aggression. We were simply rejected precisely for who we are. There was no second chance at redemption. We weren’t offered an opportunity to explain our exceptionality. We were just cut off and discarded as broken beyond repair. We were an embarrassment. Our awkwardness and inelegance brought shame and isolation. We were invisible.

We were each story of every marginalized creature Jesus came upon during his ministry. We were ostracized and in need of inclusion. We were diseased and in need of healing. We were unclean and in need of justification and cleansing in order to be made whole again. And we aren’t the only ones.

As alienated as I felt that night, and for several days afterward, Noah and I are not alone. More and more frequently, I am becoming alert to hurting and broken people. Often we are tempted to think that people are experiencing a reality they had complete responsibility for creating. Often times, as with us, that is not simply the case. Just as even the most sinister of objectives have unpredictable conclusions, the most innocent of best intentions can be catastrophic. There is not always a simple answer for suffering. And even if it appears there is a simple answer, the root causes for some issues are too complex to explain away in an attempt to systemize pain and suffering. I’ve noticed when we work so very hard to explain affliction and distress that we are doing so in an effort to exclude ourselves from a possibility of such tortures in our own experience. In other words, if I can explain how that person got into his or her situation I can keep myself from suffering similarly.

But we are missing the point.

I don’t think we need to explain it away. I don’t think we are ever called to figure it out. As a matter of fact, I believe we’ve been called to act in light of the fact that we cannot comprehend it. I don’t think love takes the time to evaluate suffering that way. Love simply acts in the face of the uncertainty. Love moves in the midst of the mess. Christ’s kingdom on earth wasn’t meant to assess every risk and liability associated with agape love. If that were the case, no one would take a risk on Noah and I because we don’t look that good on paper. No, kingdom doesn’t work that way. It isn’t logical. Very often it is counter-intuitive. It runs toward instead of away. It embraces instead of alienating. It takes on the suffering of the world.

Where was Jesus in the Chinese restaurant? He was a young waitress who appeared to be about 5 months pregnant and was waiting tables. Her eyes were tired and she looked dead on her feet. I’m sure she didn’t understand the complexity of Noah’s neuro-diversity.  She probably didn’t have a certification in Autism Spectrum Disorders. In all honesty, I think she was probably a college drop out. But she didn’t seem to feel the need to place us on the continuum of acceptable risk. Instead, she was kind. And it didn’t cost her a thing.

I ended up bringing most of my dinner home. I even packed up the fortune cookies because I just couldn’t stay in that room one more second. A few days later Noah pulled his off the counter and opened it. It read: “You will influence many people with your words and travel far.” Ironic, but no less so than mine which read: “You are cherished.” Neither fortune seemed appropriate that night because I forgot that kingdom is often found in the small, least likely of places – like the face of a waitress who wasn’t too tired to be kind to a child who appeared to be retarded on the surface but could meet kindness with kindness. And in the words of that same child as he comforted his mother with the words: Mom, I love you more than anything.

Maybe our fortunes weren’t so wrong after all.