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A Hand and Foot

Another story about ministry WITH persons with disabilities…

 

He was so excited that he laid out his clothes 3 days ago for this morning’s outing. That’s the thing about living on the spectrum – we like to plan in advance. Actually, we’re lucky today even happened because we almost didn’t get to do the big event. If it hadn’t been for the extra work of two precious men who choose to see beyond our restricted vocabulary and arm flapping, I’d probably be managing a major meltdown this morning due to “change of plans”. I hate it when we change our plans. It leaves me feeling like I’ve been hit by a bus.

The countdown started on Thursday night: “only two more sleeps (as in a night’s sleep in Noah language) until the best day ever”. Then on Friday morning: “I can’t wait until tomorrow. It’s gonna be the best time ever.” So with our favorite shirt, our most comfortable shoes and Winnie the Pooh we head out into our adventure.

Now some of you must be thinking that I took Noah to a carnival or fair. Surely, only something to rival Disney World could command this much planning and preparation? Maybe we went to see a movie at his favorite theatre and then stopped to carb load on the way home? Nope. Today we got to deliver food to the Lawrenceville Food Co-Op. Yep, that’s what all the excitement was about. Let me further explain…

As I cited in my last post, Noah has become obsessed about the food ministry at church. He “helps” take donations each Sunday morning by greeting church members ever so warmly at the door with “hey…where’s YOUR canned fruit?” (Mental Note: screen for autism among the greeters at your church…I’m just sayin’) Each week he helps stack and count the contributions. He has also been part of the decision making process for each week’s featured donation item. I imagine in some way this has helped him order his environment at church. But, oh, if only this perseveration was restricted to the church building. In addition to shopping on Sunday afternoon – that’s right, the WORST time of the week to grocery shop and thereby, loose your anointing – for this week’s item, Noah has solicited donations from family members and friends. He just cannot understand why everyone has not caught on to this exciting phenomenon.

So this morning, we visited the Food Co-Op and delivered donations. One of those sweet men who’ve so kindly adopted Noah called the ministry ahead and told them about Noah.  The director of the Co-Op was so happy to hear of his interest (that’s a mild way of putting it I think) that she made plans to give Noah a personal tour of the facility. My only prayer was that we would not make a bigger public spectacle of ourselves than we usually do – on a scale of 1 to 10 (10 being “wow, did you just see what they did”) we typically average out at a 7.

We couldn’t even get in the parking lot of this modest church in Lawrenceville. Mike hadImage warned me that it would probably be crowded and noisy on a Saturday morning. Noah had actually asked me on the ride up, “So mom, what exactly will this be like?” It has probably only been in the last year and a half that I ever dare take Noah anyplace I have not scouted out previously. I would always have to report how it smelled, the noise level, and lighting conditions to him before we ventured anyplace new. Well, this morning I couldn’t do that so I answered, “Well, Buddy. I’ve got no idea.” His response was typical Noah: “Well, this will be something to remember then, huh Mom?” My first thought was, “dear God I hope not”.

ImageAfter Noah helped Mike carry in about 10 bags of groceries (the heavy work was very good occupational therapy before the noise, sights and smells…thanks for that Lord – wouldn’t have though of it), Noah was greeted by the director. He couldn’t make eye contact, but offered her a very flappy hand shake. She was warm and wonderful and put Noah at ease immediately. It is obvious that she is practiced at (and has perhaps perfected) the art of restoring dignity to the broken. So she began to take Noah through the building. She explained the in-take process and when he loudly asked, “Hey, who are these people?” she calmly explained that they were waiting to go back and get their food. She even took Noah through the offices there and showed him her filing system and explained how they manage helping so many people. He insisted, of course, checking the S file cabinet to see if we had a file. She was un-phased by his questions and requests. She introduced Noah to everyone as if he were a celebrity. Noah dutifully gave each volunteer the same view of the top of his head, and flappy hand shake. No one seemed to think anything of it.  At one point I heard her gently explaining to Noah that giving is a way we can be “the hands and feet of Jesus for people who need his help”.

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Noah said very little, but was his usual stealthily observant self. I allowed him to bring the camera so that he could take pictures. I thought maybe it would quench some of his interest, truth be told. When we got back to the rows of food, I could see him mentally inventorying the shelves. I allowed him the camera and he began snapping away. I was dismayed to find him reading the labels on the empty shelves. Sure enough, later in the car he was able to tell me everything they were out of. His biggest excitement was seeing a table set aside for baby food and formula.

I waited until the ride home to ask Noah what he thought. He typically speaks better when we are in the car and I’m driving – always has. I think it is the combination of not needing to process my facial expressions and read my social cues during a conversation and the stimulation from a moving vehicle that helps him communicate better in this way. Here is what Noah said:

“I feel proud to be a hand and foot. It was a great day because Jesus helped people today. Babies won’t be hungry now. Oh, and mom…they are out of toilet paper.”

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Mike had given him a list of the Co-Op’s Top Ten needs. Noah read them silently until we reached the interstate. Somehow I don’t think today quenched Noah’s desire and passion for the food ministry. Instead, we may have just created an all hands and feet monster that might go through your pantry should we stop by your home to see if you have any of the featured donation of the week.

Everybody lock up your toilet paper.

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Shaping Special Hearts: Delayed But Not Defeated 08/20 by CMConnect | Religion Podcasts

Join host Vangie Rodenbeck as she discusses developmental progress in “typical” children, compared to developmental delays in children with special needs. Learn how you can partner with families in your church to help make an impact on the development of language, social skills, and self-help skills.  Hear back-to-school success stories and how the small actions of faithfulness made them possible!

 

Shaping Special Hearts: Delayed But Not Defeated 08/20 by CMConnect | Religion Podcasts.

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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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Shaping Special Hearts: Reviewing Resources 08/06 by CMConnect | Religion Podcasts

Had a chance today to talk about how living the special needs life has been excellent “personal development.” Listen to hear how I learned the value of a different worldview, how I changed my expectations, and came to peace with our differences. I also highlight several resources that shaped my heart along the way. Enjoy!!!

 

Shaping Special Hearts: Reviewing Resources 08/06 by CMConnect | Religion Podcasts.