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Bells Will Be Ringing

A post I wrote last year about Christmas and autism. I pray it blesses a parent who is enduring the holidays as many of us struggle to do.

Most people look forward to the holiday season with a kind of mania. In the sweltering heat of a late Georgia summer it isn’t uncommon to hear, “Only 120 shopping days until Christmas!” I’ve never enjoyed holiday shopping, but my son’s autism completely cured me of any interest in this phenomenon.

The extra lights, smells, and sounds of the holidays often proved to be a tipping point into complete hysteria for Noah when he was younger. Blinking lights made him squint his little eyes or cover them with his hands. Christmas carols blaring over the speakers in a store declaring that it was “the most wonderful time of the year” were offensive to his sensitive auditory system. Strong smells of cinnamon brooms and pine resulted in repetitive hand flapping and other self-stimulatory activities that do not go ignored by other shoppers. We once went to see a holiday light display at a large garden only to have Noah completely loose his balance and fall in a lily pond. I am convinced he couldn’t even retain his sense of balance because of all the sensory input. It only took a few holiday seasons to leave me feeling particularly “grinchy” about the entire affair.

But worst by far was the assault we would encounter on a simple trip to the grocery store during the holidays. As soon as I would open the car door, Noah would begin frantically chewing on his pacifier (or later a toy) in a fear response. I learned to register his panic and could immediately diagnose the source – that shrill, incessant ringing. Never decreasing in frequency, its high-pitched and piercing clanging grew as you approached the storefront. Some of you know that of which I speak – the Salvation Army bell.

I am convinced that these people do an excellent work, but for the life of me I searched high and low for stores to patronize at which they were absent. The assault brought on by the ringing of those bells caused Noah’s nervous system to be overloaded for hours. It simply was not worth anything I needed from a store if I had to deal with an anxious autistic child for several hours to obtain it.

In subsequent years, Noah would learn to integrate sights and smells into the tangled mass of schema his nervous system interprets. Visiting holiday light displays would become a favorite activity of his. He even learned to tolerate what we came to call the “Santa smell” so that he could visit that jolly old elf and present a handwritten list of toys he wanted for Christmas. But that bell continued to be despised by one and all, causing him to race through parking lots with hands over his ears to escape its alarming sound – until this year.

A few weeks ago we arrived at our neighborhood Kroger store to pick up a few items for supper. I knew the bell was there and had taken Noah by the shoulder as we got out of the car to insure he wouldn’t rapidly run through the parking lot to avoid the noise. Suddenly, Noah turned back to the car saying he had forgotten something. I assumed he was retrieving a toy to manipulate in order to self-soothe or even a set of the earplugs that I keep in the glove box now for such occasions. I saw him hastily shove items in his pocket and return to my side. After we traversed the parking lot he surprised me at the curb by speaking to the Salvation Army bell ringer. We have been working on social skills, but it seemed odd to me that Noah should seek out the perpetrator of our discomfort for a random meet-and-greet. I rushed him into the store and we began our shopping.

At he conclusion of our purchases, I began to maneuver the shopping cart through the automatic door only to have Noah race out in front of me. I hurriedly abandoned the cart to prevent him from dashing into on-coming traffic only to be brought up short by an astonishing sight.

The bell had stopped ringing and Noah was standing face to face with the Salvation Army volunteer. I did not know what he had said to begin the conversation but the response from volunteer was, “Well thank you young man.” And with that, Noah began to empty his pockets into the red cauldron. When Noah had returned to the car for what I assumed was an object to soothe himself, he had actually emptied all of the change from the console. When I arrived at the scene the volunteer said, “Your son just thanked me for my service. What a considerate young man!” I thought, “You have no idea what it took for him to approach you sir.”

Before we walked away Noah insisted on placing a sticker from a roll the lady at the cash register had given him on the apron of the volunteer. The man laughed and smiled and shook Noah’s hand. (If you happen upon a Salvation Army volunteer in the greater Cumming area with an “I’ve Gone Krogering” sticker on their apron you’ll know we’ve been there.) I was overwhelmed with questions as we walked through the parking lot.

Once settled in the car, I asked Noah about what he had done. He said, “That bell is terrible but he is working to be kind for others. That is what I want to be when I grow up. I want a job where I can be kind to others. Its like Jesus.” I suppose sometimes we have to be willing to allow ourselves to be assaulted by the overwhelming and uncomfortable in order to show the kindness Jesus calls us to.

Teachers and administrators at Noah’s school have told me that he displays an atypical amount of empathy for a child with his diagnosis. The word autism comes from the Greek word “autos” meaning “self.” And there is an element of this disease that gives Noah the appearance that he is preoccupied, primarily with himself and his feelings. What I have observed, however, is that this does not mean that Noah does not concern himself with the feelings of others. Rather, as Noah detects the circumstances and feelings of those around him his autism cues him to apply those feelings to himself. In this way, Noah experiences more of the feelings and emotions of those around him – not less. He has more empathy because everything that happens to those around him actually happens to him too.

I believe this is what prompted Noah to actively move beyond his comfort zone to participate in kindness. His life is more experiential than mine. From the excess of senses that his brain funnels through his nervous system to the way he encounters the hardship of others, Noah’s life is more textured and richer because autism gifts him in this way. Astonishingly, his empathy response prevails over the anxiety and fear triggers and Noah can be more like Jesus than I can.

Noah’s occupational goals now include Salvation Army Bell Ringer. God bless us, every one.

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The Autism Gospel – Come And Die

We have been talking with Noah for years about baptism. We probably started when he was about eight or nine years of age. All the rest of the kids his age were starting to make the decision to “give their life to Jesus,” so we assumed Noah would be excited to do so as well. After all, he has always been more at home in water than dry land so fear of drowning wasn’t an issue. He had heard all the stories, could give all the correct answers and say all the right things. So what was holding us back?

But Noah was unequivocally uninterested. More than that, he promptly shut down any conversation about Jesus that led to his own immersion in the waters of baptism. I would ask if he believed “in Jesus.” Noah would look at me strangely. I would elaborate. “Noah, what do you believe about Jesus?” He said, “Well, he was Jesus.”

So I got very specific. “Noah, what do you know about Jesus? What was true about him?” Suddenly he could converse about Jesus’ love for people, his compassion, miracles, healings, the Virgin Birth, his death on the cross – all of it.

This once frustrated me. But I think, after some research, I understand why. Paul Collins, in his book Not Even Wrong, chronicles autism throughout history. A historian and the parent of an autistic son, he describes these disparate views as “not even wrong.” He writes,

“Wolfgang Pauli used to deride colleagues in theoretical physics who disagreed with him as ‘not even wrong’. He meant this as a put down – that the questions they were asking were so off-base that their answers were irrelevant. Yet Pauli’s notion could also be applied to those who are autistic. They do not respond in expected ways to questions or to social cues…but then, only a person working from the same shared set of expectations could give a truly wrong answer. The autist is working on a different problem with a different set of parameters; they are not even wrong.”

Here is what I came to understand. Noah did not necessarily think he should have a personal “point of view” about Jesus. Our expectation is that people come to “accept Jesus as their Lord and Savior.” For Noah, Jesus is who he was. I don’t think he has a sense of urgency to develop an opinion about something that is, to him, a fact. On that count, I think Noah was not even wrong.

Still, Noah’s fear plagued me. He finally asked us just last weekend if we thought autistic people would “go to hell” if they weren’t baptized. We knew he was very close to a decision about what it would mean for him if he did not make a choice to do this. My husband took a very different approach as we continued this conversation.

He said, “Noah baptism is a symbol. Just like the icons on your ipad are symbols. When you open that symbol, you know what kind of program you are going to find there. Baptism is a symbol to everyone that you are a Christ follower. If people were to spend time around you and get to know you and kind of ‘open you up’ like that icon, they would see a person who believes in Jesus and wants to follow him.”

Noah replied, “Then I want to do that symbol. I want to do it this Sunday.”

We practiced giving his confession and prepared him as best we could for the freezing waters of our apartment pool – since our church doesn’t have a baptistery. I asked Noah what strategies he would need to make this less stressful, like his earplugs or swim mask. He said, “Earplugs are fine but I’m not wearing my swim mask. I’ll just have to get water in my face. This is not swimming. It is a symbol.”

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When all was said and done, later that night Noah began to cry during dinner. Tenderly I pulled him aside and asked him what was wrong. He tearfully explained that he was afraid of what would happen now. He said, “Now that I follow Jesus what if something happens and I die? What if you die?”

I couldn’t understand his sudden panic. I reassured him that I was not sick and planning to die anytime soon. I re-explained that baptism had been a symbol of how we live, not just of what happens after we die. Then he said, “But following Jesus is hard. We might die. I don’t want you to die yet. I don’t want to die yet. But now I am following him so I have to. Now I am a symbol.”

Then I realized that Noah had really internalized Jesus’ command to “follow me” – a call to come and die. Die to yourself and anything you want that stands in the way of kingdom. A call to die to our desires and motives and, instead, live for his plans for our life. Die to comfort and security and embrace faith in the unseen. Die to our own fears and live as a symbol of Christ to the world.

It took Noah longer to get here than I probably would have liked. But when he arrived, boy did he arrive! I think Noah fully comprehends the way of the cross in ways I might like to try and forget. When he repeated that Good Confession yesterday, he completely embraced a way of life that not only means living follower of Christ daily, but also living a life marked by a symbol of death.

After all, he did bid us come and die.

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“Special…but not in the Bad Way”

It seems that I have landed myself in a somewhat controversial vocation. Initially, I didn’t dream that special needs advocacy could provoke so many disputes. I had assumed that everyone would be on the “same page.” Silly me.

While I knew of (and completely support) a variety of approaches for ministry to children with special needs, I have learned over the past year that many times the waters are murky. Terms like “inclusion” and “self-contained” claim prominence in a debate that I hoped would be about drawing people to Jesus. People who, by the way, desperately need the Story.

The Story I am referring to is the old, old story – that overarching story of reconciliation that we call The Bible. People with and those affected by disability need to hear the unmistakable refrain that echoes through all 66 books: God created humanity in his image, loves us, and went to great lengths to redeem us. All of us – even those that the world considers damaged, broken and disposable.

Last spring I was given an opportunity to do something I never thought I’d be able to do. I was asked not only to edit materials in such a way as to tell that story to children with special needs, but to help design a VBS format to do it in. Beyond the arguments and disputes of “inclusion” and “self-contained” classrooms, I got to write materials that send the message of the Gospel out for all children. Even those who are very different.

Noah was thrilled with my opportunity. When I was in ministry, Vacation Bible School was the bane of his summer. It disturbed his schedule. The decorations disrupted the predictable environment he clung to. Everything from worship to crafts to Bible story was offensive to his delicate nervous system. He even hated the shirts. Over the years, my teaching team found countless ways to integrate Noah into VBS. Those efforts were precious to both of us.

When he heard I was writing to give suggestions that make it possible for kids like him to have an easier time at VBS he said, “This is great. We can do it Mom, if we just have a little help.” That “little help” is what I have been working on for several months now. As I wrote I found it included modifications to story telling techniques and games, as well as instructions on how to make “members” of the disabled.

Offering them places as members in our community, it turns out, has much more to do with making ourselves more open to them than changing them. I will ever be thankful to Standard Publishing for their openness to every suggestion I made. As a matter of fact, in a meeting when we discussed available space for both a special needs amendment and a “regular lesson” the question was asked: What happens if we don’t have space for both? The answer given was: Then the special accommodation BECOMES the lesson for EVERYONE. That, my friends, is inclusion on a level different from any popular dispute about least restrictive environment. It is about membership.

I’ll prove it to you.IMG_8750

On top of the enormous opportunity to write for this project, the team invited Noah and Ito be a partof the video shoot for the VBS video. So, Noah and I, armed with noise reducing headphones and other sensory accommodations trekked to Dayton,Ohio. If you are wondering what Noah thought of this you will be glad to know that he kind of viewed it as a mission trip.

He was determined to show people what a “little help” looked like. So learned the VBS songs and performed them on video – with his noise reducing headphones. He took park in lessons and games using those and other accommodations I had written. For a break in the day we visited Safari Sensory Station, a special space I created for sensory breaks and one-on-one teaching at VBS.

 But here is the proof of membership…

At lunIMG_8747ch on Day 2 of the shoot we were having lunch in the Green Room (which as Noah pointed out was not “green” at all). He and I has gone through the line ahead of time and were sitting alone at a table enjoying lunch. Soon the other kids and adults filed in and started eating. But then something amazing happened.

I looked up from my sandwich to see 5 kids from the group standing with their plates at our table. One of them said, “We didn’t want Noah eatingalone. Can we sit here with him?”

Why did this happen? Why did 5 kids who had never met Noah just 24 hours before not want him to eat alone? Besides, wasn’t I there? What prompted them to include him in their lunch bunch? How did he become a “member” of a group of strangers?

I can tell you how. He had been included, to the best of his capabilities, in worship and lessons and games and crafts. Did he take breaks? Yes. Was he in 100% of every activity? No. But his very presence and participation on some level told these kids that he belonged there. He was a member of them.

At the end of our time there I asked Noah how he felt about the project. He said, “It made me feel really special – but not in the bad way.” Apart from feeling different and apart from the group, I think Noah felt honored for those differences. Still a member of the body, but with a very unique gift to offer.

You know, special…but not in the bad way. That, my friends, is membership.

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The Autism Gospel of Samaritans and Green Beans

I’ve been asked recently what kind of things can help bring disabled people into the body of the Church as members in community. In the spirit of answering that questions (and of Throwback Thursday) I’m reposting a blog from several years ago. I’ll always be thankful to North River Church for making us members.

 

“Mom, don’t have hurt feelings, it’s just a growing up thing to do.”

 This is how Noah started a heart-to-heart conversation with me about a month ago. I was terrified as to what would follow this declaration of independence, but encouraged him to continue. Not a fan of “small talk”, Noah got straight to the point. “Mom, I want to put myself to bed at night.” I tried not to emotionally respond to this newly found sense of autonomy but my heart cried out, “No! Not the bedtime routine!” (Sometimes I wonder who the autistic person around here is…maybe it’s contagious after all.) So without any emotional affect at all, I asked what this might entail. Just which parts of our routine was I to forego in the spirit of pre-adolescent development? To my surprise, his idea of putting himself to bed meant that Noah would say his prayers himself.

Now I should say that when we first received our diagnosis one of the most bone chilling prospects of 299.0 was the “lack of social or emotional reciprocity”. What was that going to mean for Noah? Would he be capable of a conscious or was he destined to become a serial killer? Many nights would find me bleary eyed cruising the internet for adaptive behavioral methods that might be the cure for our curse. My biggest fear was what this would mean for Noah’s spiritual life. Without emotional reciprocity, could he ever respond to God as his Savior and forever friend? And he couldn’t even talk to me or conceive of me as a person when I was right in front of him. Could Noah ever conceive of a God who loved him enough to send his son to die for him? Would he be able to ever communicate with God?

To say these thoughts plagued me daily in our early years is the epitome understatement. I methodically tried different approaches to break through to a place where I could access Noah’s soul. My only solution to the prayer problem was to make a small photo album with pictures of those for whom we could pray. Using photos from Christmas cards, I used this book each night to hopefully convey to Noah that praying included talking to God about other people. While it has been a long time since I’ve needed to use the book to break through to Noah, I have still often wondered at night: Does he even listen to the words I pray or is this just part of the routine to him? Like the parent of any “normal child”, I have wondered if my child would internalize his faith.

While I am sometimes tempted to feel that autism has robbed me of certain liberties as a parent, I am constantly reminded that it has given me far more than it ever took away.  While I don’t even pretend to have this disorder “by the tail”, I can say that I’ve found there is much more happening than often appears on the surface with an autistic individual. Whereas before I might have deduced from certain behaviors that my son lacked emotional reciprocity, I now see that I believe Noah has been gifted with heightened senses. I can only speak for “our case”, but I know that Noah feels and sees things that elude those unfortunate enough to be normal. Here is how I know…

 

Our church supports a local food co-op to provide for families in need. We’ve participated before by bringing in assorted canned goods and allowing Noah to place them in the grocery cart located in the foyer. However, last Sunday’s emphasis was on green beans. Somehow, Noah really caught on to this specific idea. All week long he inundated me with reminders that we had to get green beans for the “hungry people”. And when I say that Noah reminded me, I mean SEVERAL times a day because when we focus on something we REALLY focus on it.

So on Saturday when we did our grocery shopping I patiently waited while Noah picked out just the right can of green beans – which turned out to be a 4-pack but this is for the Kingdom right? He placed them in the buggy and checked on them several times as we continued to shop. When we got to the check out, Noah dug them out from under the rest of the groceries so that they would be checked out first. I grimaced as his arms flapped when they “beeped” over the scanner. Then I promptly forgot about the green beans. That “to do” had been checked off my mental list.

Last Saturday evening, I stood at the door listening to Noah’s prayers. Even though it’s a  “growing up thing to do” Noah still prays aloud with his hands clasped to his chest. I heard him say, “And dear God, please don’t let me forget the green beans! Don’t’ let me forget the hungry people.” My mouth went dry. I swear that I believe the salvia was immediately redirected into tears because I instantly wept.

 

Dear Lord, please don’t let me forget the green beans and the hungry people. When was the last time I prayed with the sincere spirit to remember and not forget?

 

It was then that I remembered Noah has also been fixated on the story of The Good Samaritan – or as he calls it “The Story of the Guy on the Road”. I find it interesting that Noah doesn’t identify with the hero, but with the wounded. I’ve acted out this story dozens of times in Sunday School lessons. No one really wants to be “the guy on the road”. It’s the Samaritan that is the hero. We even make a big deal about how marginalized the people of Samaria were and how extraordinary it was for Jesus to choose this unlikely hero. But Noah never seems to get past the image of the wounded man. It seems Noah has a heightened awareness for those in pain and need. I don’t have to wonder why.

I can still see Noah laying under the table in most of the Sunday School classes he attended as the rest of the class sat obediently around the story circle. My wounded little boy would stay on the fringes of his own society, paralyzed by his own brain for many years. I wonder if when Noah sees the picture of the man prostrate on the road, some part of him doesn’t transport his mind’s eye to the perspective of laying on the ground himself. I believe that even though we could not see it at the time, Noah was desperate for someone to come along and be his Samaritan. And many teachers did just that. In this way, he identifies with the wounded and passed by in a way most of us cannot.

What I find difficult to grasp is Noah’s desperate plea not to forget those in pain. Having experienced so much pain himself, why would he want to remember more? Well for Noah, I guess he can still see from the perspective on someone on the road. And contrary to all logic, Noah prays to remember and not forget. He prays not to forget the pain and suffering with which he identifies. In his own way, he is willing to relive that scenario in his memory in order to keep his perspective. Most of us spend our energies avoiding personal suffering or, at the very least, trying to put it behind us so that we can “go on”. But Noah asks to remember.

I hope that one day, I can grow to a place where I can ask God to help me remember my pain and not forget it in order to benefit someone along the road. Until then, I will remain inspired by green beans and Samaritans.

 

 

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The Autism Gospel: Delay – Not Defeat

I am sure the clerk at the shoe store did not anticipate the look of sheer horror on my face as he answered my question. “No ma’am, we do not carry shoes that size with Velcro closure.” My heart began to race and out of the corner of my eye I could see Noah’s wrists begin that small wringing motion that accompanies his anxiety.

 I always knew the day would come when his foot would outgrow our long trusted accommodation for not being able to tie shoes. Each year I have offered the silent (and sometimes vocal) prayer: God bless you for Velcro. But not this year.

With all the calmness I could muster I turned to Noah and announced that it was time we conquered shoe tying. He was appropriately mortified. I asked him to pick out shoes of any color that he liked. His response was, “I don’t know. I don’t care. There is no Velcro.” This was cycle was repeated about 5 times among the crowded aisles of new smelling shoes. My stomach churned.

My husband deftly began pulling shoes off the shelves and instructed Noah and I to sit while he brought us option after option. Numbly, I shoved his foot into shoe after shoe while Noah discussed, at length, how he didn’t know how to tie shoes. Noticing my desperation he finally said, “Well, I guess we are going to have to learn this, huh Mom?”

When your child is developmentally delayed, you learn to carefully select which “hill you are going to die on” as far as acquiring skills. For instance, while most children were proudly learning how to tie their shoes, we were still mastering potty training and learning to speak. It simply did not make sense to add shoe tying to a list of things we needed to learn at that time. At that time, I assumed we would pick up that skill later.

But, I confess, as years passed I grew doubtful that we would ever attain this goal. There just seemed to be some disconnect that prevented Noah from being able to see the steps and transfer them to the fine motor movements required to make the laces obey. And I, working on many other skills that did not have a ready accommodation like Velcro, chose to let that milestone pass us. As a matter of fact, it was so far in the distance that I had forgotten about it until that unfortunate day in the shoe store. 

I write this for the parents of so many “delayed” children who easily identify with watching a milestone pass you by. I remember the pain as so many of my friends commemorated milestones in baby books and scrapbooks that I wasn’t sure we could ever hope to celebrate. You make a kind of peace with it, knowing you can’t make those events happen and you try to push those to the back of your mind.

Today I have good news for you. Delayed doesn’t mean you will never reach your destination – it just means you will be arriving by a different route and on a different timetable. If a flight or train is delayed, we don’t automatically assume that it will never come and that we will NEVER see our loved ones. We are discouraged but not desperate and without hope. Instead we settle in for a wait and try to amuse ourselves for the duration of the postponement. Somehow, that message isn’t always conveyed when we discuss developmental delays in people.

I know how easy it is to get discouraged. I realize that it may even be a valuable part of the grieving process to “give up” on certain goals in the name of acceptance and sound mental health. But I also know that delay doesn’t mean inevitable defeat. Time can be kinder than we initially assume and some of us just need a little more of it to reach our destination.

Noah learned how to tie his shoes in just a few hours this weekend. He proudly announced, “I can do it now! And it isn’t even so hard this time.” It was an admission that while he could not accomplish this goal just a few years ago, now his brain has advanced to a different stage making it not so hard “this time.” At 12 years of age, we have finally learned to tie our shoes. “Now arriving at Platform 12…Shoe Tying…” There has not been a victory so sweet in a long time.

Perhaps this is because this speaks to all of us. So many of us thought we’d be further along by now. Maybe you thought you would have advanced further in your vocation at this point in your life. Or maybe you are still waiting on an interview after months and months of searching for a job. Or you might have an inner struggle or physical illness from which you have been awaiting healing yet still no healing comes. You have been delayed. Faithfully you wait on a day when it either won’t hurt so much – or it just won’t matter. Until then you put your life together with Velcro and do your best to get on with your life. But you still experience the pain of delay.

This weekend, Noah taught me to have the faith to still watch the tracks for the arrival of that delayed train. I keep my ear attuned for the sound of a blessed whistle that will announce the advent of deliverance from hopelessness. No, a delay doesn’t mean inevitable defeat. We must simply find the faith to wait.

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God bless the hands that tied these shoes. You enabled his fingers to acquire this skill at just the right time. I praise you for your faithfulness! Guide these hands today as he learns even more new things. Bless these hands to serve others. Direct the path his feet will take today. Bring us ever closer to you. Amen.

 

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Roses Are Red

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

Special Needs at VBS

Special Needs at VBS

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

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Fishers of Friends: a Membership story

What follows is a parable from real life about friendship and one becoming a member of the fellowship of another despite great differences. I am ever thankful for the man and the boy who made the story real, and to God for allowing me to witness it and tell  it.

 

We attend a small church full of fun-loving, kindhearted Christ followers. Were I to tell you about each of them I would begin each introduction with, “Now there is Cathy…she is my favorite.” So will be no surprise to any of them to hear me begin “There is a man at my church named Ned and he is my favorite.”

It isn’t uncommon for Ned to call to check in on me every once in a while. He takes a personal interest in if my car is in fine operating condition and often inquires to my health and that of my husband. He is a builder of many things by trade. Often I am privileged to view of a picture on his phone of something he has built. We are friends.

Knowing Ned the way I do, it really didn’t shock me when he expressed a desire to take Noah fishing. Since we moved so close to the lake a year ago, Noah has constantly expressed a desire to go fishing. Were my father alive, nothing would have made him happier than spend a day on the banks of Lake Lanier with Noah. But I fear I have forgotten most of what I learned by his side.

When Ned heard of this need, he immediately saw an opportunity to share something. It should be said that he doesn’t have any formal training in special education. But Ned heard that Noah had an interest in something he was interested in and offered to spend the day with him.

Ned took this opportunity very seriously and called me several times to work through both our schedules to find a time for their outing. We worked for about a week until we could move around this and that to find an open morning. It took purposeful planning on his part to make a space for Noah during his busy week.

And they fished.

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 It should be said that Noah’s difficulty in large and fine motor movement make certain elements of fishing more complicated than others. For instance, Noah still lacks the fine motor skills to tie shoelaces. I wasn’t sure how he was going to bait a hook. Additionally, Noah is left-handed so standing behind him to model hand-over-hand is impossible (for me at least.) But I was sure if worst came to worst, Ned would just it for him. As for large motor skills, casting takes more large motor planning than you might think. I knew if Noah became frustrated by these two things before he even got his hook in the water all would be lost.

It was how these complex obstacles were completed seamlessly that began my reflection of this parable. Noah became proficient at baiting his hook. How? Well, Ned might not be instructed in occupational therapy principles to enable him to teach the correct over-under method, but as it turns out Ned is even more capable than that for you see, Ned is left-handed. It was much more natural for Ned to instruct Noah than it would have been for the best right-handed therapist. It seem that Ned had been especially equipped for this task without any preparation. (Maybe I’ll ask him to teach him to tie his shoes next.) I assume that observing Ned cast in all his left-handed glory allowed Noah the exact view he needed to calculate his motions and then imitate them.

Noah caught ten fish that day.

Allow me a moment to breakdown what may appear to be sweet story into teaching on accepting the other as a member.

  1. Ned heard… This hearing was possible only through Ned’s placing himself in proximity to our family. He has a taken an interest in our family and its needs. He placed himself in proximity to know us and to know Noah. His nearness has been a blessing to my son’s life. How often do we place ourselves in proximity, in nearness, to someone other than us?
  2. He followed through…The intentionality of this simple, peaceful appointment cannot be overlooked. It was just one morning of his life, but it required a purposeful following through of his best intentions. How many times do we genuinely mean to get around to spending time with someone but let other things gain importance before it ever happens?
  3. And they fished…Fishing is, in general, a peaceful and relaxing activity. My father always declared he would be a “better man” if he lived on the water because of its relaxing and peace-giving properties. But the lack of busyness perhaps required even more of Ned. Noah is no brilliant conversationalist. Many people are uncomfortable around the silence. It also placed Ned in strange environs with someone who clings to familiarity and routine. In short, it could have been disastrous. Ned, however, did not seek a proactive solution to every eventuality. He was simply open to Noah. Openness requires we let go of any preconceived expectation and just enjoy someone for themselves. In this way we may become full members of one another in a community formed by love. Henri Nouwen wrote concerning what constitutes a community in The Genessee Diary. He reflected

The uniqueness of our neighbors is not related to those idiosyncratic qualities that only they and nobody else have, but it is related to the fact that God’s eternal beauty and love become visible in these unique, irreplaceable, finite human beings. It is exactly in the preciousness of the individual person that the eternal love of God is refracted and becomes the basis of a community of love.

Ned was able to, in openness, look beyond Noah’s idiosyncrasies and oddities to see him in the image of God – unique, irreplaceable, and precious.

4. Left-handedness…What makes me smile most is that Noah and Ned share something that Noah and I do not – left-handedness. They could instantly identify with one another. They probably have little else in common, but this simple identification made all the difference. The willingness to identify with another is a gift to them. Because of that willing identification, Noah sought to imitate the person before him.

 

PROXIMITY + INTENTIONALITY + OPENNESS + IDENTIFICATION = MEMBERSHIP

 

I have no doubt this will be the first of many outings for the” Left-Handed, Para-Autistic Fishing Club of Cumming.” And each will be a parable to itself testifying to membership.

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The Autism Gospel – Members as Friends

The school year was almost complete and I was at our last IEP meeting. While these events once struck terror in my heart, this year we have been blessed with a wonderful team. Before we began, one of his teachers said, “Oh, wait! I have to tell you what happened at recess! I’ve never seen anything like it.” This is the story she told.

 

One of Noah’s best friends is a little girl who is blind. Each morning Lauren greets him in their homeroom by running her hands over his face, being gentle around his glasses. Then she quickly moves her hands to tickle his stomach and announces, “That is a Noah!” They play together at recess. She mostly sits and listens to the other children play or enjoys walking hand-in-hand with friends on the playground.

During the last week of school, his teacher looked up to see Lauren and Noah having a conversation. Noah, standing in front of her, had her cane in his hand and seemed to be asking her a question. The teacher observed Lauren smile and laugh, then nod at Noah. But what happened next was described as his teacher as something she has never seen before.

Taking his friend’s cane in his left hand, Noah placed his hand over his eyes with his other hand. Using only the noise of his friend’s voice, Noah began navigating the playground. The teacher said the girl would laugh as Noah would stop and call out something he had run into. This went on for ten minutes or so. Then Noah went back to her and took his place at her side.

When asked about what happened, here is what Noah said: “I just needed to know what it is like to be Lauren. If I am really going to be her friend, I think I have to understand her. Pretending to be blind helps me be her friend.” 

I believe this reveals something crucial to us about how to include people “other” than us in our membership. Many times the first reply to involvement in a disability ministry is that the training of volunteers is problematic. We feel that there is no way that a volunteer can be appropriately trained to handle every potential situation that might occur when encountering someone with a disability. After all, they are so different an other than me. How can I prepare myself for such a task? 

I think the answer lies in that very assumption – that it is a task. Yes, tasks require preparation and training. Friendship, however, does not. How much training have you undergone before beginning a friendship? Think of a particular friend. Did you read books to prepare yourself to have a relationship? Did you attend a seminar? Was there a training to undergo to plan for every eventuality and potential circumstance that a friendship might endure? 

The answer is no. To be a friend, you do what Noah did. You take an interest in that person. You learn that person. What is it like to be them? What do they enjoy doing? You make an effort to identify with them. You spend time with them.

Benjamin T. Conner, in Amplifying Our Witness, writes

“Friendship shows a way of relating to a person with developmental disabilities beyond the medical model of care – an etiology, signs and symptoms, or a technical solution to the ‘problem’ of disability. In the medical model, disability is often characterized in a way similar to an illness; a specific, definable pathology and an individual problem to be eliminated – this model does not address the human, as such….Christian friendship – the affirming presence of another – transcends relational boundaries of likeness, instrumentality, or social exchange.”

Noah has no qualifications to be friends with Lauren. She is merely a friend. Are their exchanges atypical? Yes. But reviewing many of my friendships, I imagine our exchanges could also be described as atypical. Additionally, those social exchanges we define as critical to friendships vary from relationship to relationship. Honestly, there are some of my friends with whom I discuss my passions of theology or disability ministry in detail and others with whom I do not. That kind of social exchange is not necessary for me to consider one a “friend.”

Noah did not attend special training to acquire his friendship. Instead, he merely observed Lauren and learned her. He took this learning so far as to position himself in an environment where he might fully identify with her. Anyone who has sat by a friend in a hospital waiting room or funeral home has done the same. We can’t be prepared ahead of time for these situations; we learn as we become members of one another.

Memberships that are built on friendship are long lasting. They endure. When you become a member of another in this way, there are fewer ways this person is “other” than you. There are fewer opportunities for fear or misunderstanding based on differences and more room for a grace that flows from brotherly love.

Noah is a member of Lauren. He is her friend. Who will we extend the hand of membership to?

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Say “Hi” for Me: A Lesson in Membership

I’ve got a new story to tell you on Monday, but it makes more sense in light of a post I made last Fall so read this first. Enjoy… 

            The words I had hoped for finally reached my ears. Noah proclaimed, “Mom, I did it! I made a friend!” Moving and starting a new school has been a challenge for us both, but the social impairments that accompany Noah’s autism prevent him for making friends easily. I eagerly asked what his name was and he said, “Lauren.” Before I could comment on that bit of information, Noah added this: “And one of the things that makes her so cool is that she gets to carry a stick around all the time! You know why? Because she is TOTALLY blind. Cool huh?”

            I paused at this comment. Inside I already knew that truth, Noah had gravitated toward the special education class once again. We’ve worked hard to pull him out of the self-contained classroom, hoping that exposure to “normal people” (the neurotypical – meaning those with typically functioning brains) would increase his social skills. As it turns out, being around normal kids just amplifies his differences and makes Noah stand out more. Still, I had prayed for maybe a shy, average little boy. Instead, Noah had found the opportunity to seek out a member of the self-contained class at recess. He went on to describe Lauren to me physically. I asked what they did at recess since Lauren couldn’t navigate the playground very well. He said, “We sit and listen.”

            Hypocrite that I am, I was still somewhat disappointed that Noah wasn’t connecting to typically functioning people. But I decided to be glad that Noah had reached out to anyone at all. Its strange how after everything I have studied and written, I still occasionally miss the grander picture that we are not just bodies and minds alone, but being created in the image of God. All of us.

            Flash forward two weeks and Noah races into the living room at seven o’clock one evening to announce that he wants to do something special for his teachers and friends. He proclaimed that it was time for us to bake chocolate chip cookies. Hoping I didn’t have all the ingredients (Drat – they were all there!) I was motivated to get up off the couch by Noah’s persistence.

            He mixed the batter using my Oster hand mixer and the noise reducing headphones my dad used to wear around jet engines in his job at Delta Airlines. Noah happily spooned them on to cookie sheets and we proceeded to make around four-dozen cookies. I got out cellophane bags, markers and tags to address each bag of goodies. Soon, Noah list of four primary teachers had grown to include the paraprofessional that is helping him learn the recorder in music class, the teacher across the hall from his homeroom (who has probably helped him at this locker), the school secretary who has embraced him as a member of the safety patrol, and the principal. Just when I thought we were done he shouted, “Oh! I can’t forget Tony and Lauren!” (Tony is another friend Noah made from Lauren’s class.)

            The next day on the way home from school I asked Noah how everyone liked his gifts. He smiled and showed me a note on a piece of off-white card stock. Closer inspection showed that the note had been carefully hand lettered by an adult just under Braille imprints. The note read, “Thank you for always asking how I am and saying hi.” Still smiling, Noah said, “Its from my friend Lauren.” Choking back tears, I drove home in silence. But inside I was begging for repentance for being disappointed that Noah hadn’t made friends with a normal kid.

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            When I got home I asked to see the note and it was then that I remembered Noah’s comment about their playground activity. He had said that they just “sit and listen.” From Lauren’s perspective, this is a busy and on-going activity. It is one of the primary ways she “sees” the world around her. It was then that I realized that she was thanking Noah for simply slowing down to notice her and for speaking to her. Which implies that Lauren realizes there are a lot of people who don’t notice her – or who do and fail to slow down to speak to her. Of course, she senses these people around her. She can feel them and hear their presence. But Noah, of all people, engaged with her.

            I use the expression “of all people” because Noah is, diagnostically speaking, not very capable at starting and sustaining conversation. He is no brilliant conversationalist. As it turns out, Lauren doesn’t need very much conversation. Just saying “hi” is all she really wanted. And Noah is capable of just about that. Additionally, I think what Lauren really enjoys is someone who will experience the world alongside her. Just sitting and listening on the playground with someone else is a gift to her. Lauren was created for community the same way we are. And Noah is able to participate in community with Lauren in a way that is very full and rich and meaningful for them both.

            I’ve gleaned a few insights from Noah’s recent encounter. First, I must to continue to develop a sense that people are more than traditional ideas about mind (intelligence) and body. I think this will help me see people as God sees them and then classifications like “normal” will be obsolete. Secondly, we are created for community. Sometimes, others help those of us who aren’t as socially adept into community. Noah reached out to Lauren. Ideally, someone else will reach out to Noah. Who will I reach out to?

As we reach out in love to draw others into community, never under-estimate the power of a simple “hello.” Just acknowledging someone’s presence with a friendly gesture can be all it takes to extend God’s love toward him or her. Speaking as the parent of a child with disabilities, I can say that if you want to be the highlight of their entire week, just notice them. Often we’ve been noticed with stares and giggles in a “take-a-look-at-that-freak-show” kind of way. Obviously that isn’t what I am talking about. I mean to resist the urge to ignore they are there. Sometimes we politely ignore their existence as if it is in poor taste to admit disabled people exist. Or maybe we think it is contagious. Or maybe if we get too close, we will realize we aren’t as different from them as we’d like to believe we are.

So next time you encounter the marginalized in society – those broken because of sin, the disabled, people struggling with addiction, welfare moms, or just the down-and-out – do Noah and I a favor. Extend kindness. Acknowledge their existence. Embrace them into God’s community where the word normal doesn’t exist.

And say “hi” for me.