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.

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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.

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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 Living Peacefully, The Autism Gospel

Beautiful, Peaceful Feet

I knew that it was likely to happen one day, but Noah had never mentioned it. Naively, I assumed that maybe he just stayed under the radar of kids who would bully him. I was wrong. Yesterday in the car I was lamenting how I saw a student make fun of another student today. Noah, in a very matter-of-fact way, replied, “Yeah, kids make fun of my shoes.” I felt like someone punched me in the gut.

I wanted to ask a million questions at once…Who is this punk and where does he live? Did you tell a teacher? Did he do anything else to you? Did you feel physically threatened? Why didn’t you tell me? I would have bought you new shoes! Great shoes! Awesome shoes! Way better shoes than he has…[continue Psycho-Mom rant here]

I managed to swallow back all of my fear and anger and ask instead, “What did you do?” Noah calmly replied, “Oh, nothing. This stuff just happens.” I asked if he would like new shoes. Looking out the window as we pulled into our neighborhood, Noah replied, “No, I’ll get new shoes when I outgrow my old ones. We don’t buy new shoes because of that.”

Henri Nouwen , in Adam, tells the story of Adam Arnett, his “friend, teacher and my guide”[1] at L’Arche Daybreak community in Toronto. Nouwen served as Adam’s caregiver and, after Adam’s death, felt compelled to write how “Like that of the first Adam, our Adam represents every human person and thus more easily raises the question: ‘Who is your Adam who speaks to you about God.’”[2]

noahyardshoes

I suppose Noah, in all of his autistic mystery, has spoken to me about God more than anyone I have ever known. His calm response was more than just an indicator that he doesn’t feel social pressures due to his challenges. Something in the tone of his reply let me know that he had just completely seen through an uncomfortable encounter with humanity. While it took me a few moments to grasp a Christ-like response, his insight was immediate. Nouwen wrote about the aptitude people with disabilities show in displaying better responses to the world and it’s pressures.

He was a person, who by his very life announced the marvelous mystery of our God: I am precious, beloved, whole and born of God. Adam bore silent witness to his mystery, which has nothing to do with whether or not he could speak, walk, or express himself, whether or not he made money, had a job, was fashionable, famous, married or single. It had to do with his being. He was and is a beloved child of God. It is the same news that Jesus came to announce, and it is the news that all those who are poor keep proclaiming in and through their very weakness.

Unfortunately, there is a very loud, consistent, and powerful message coming to us from our world that leads us to believe that we must prove our belovedness by how we look, by what we have, and by what we can accomplish…We need to hear the message announced and see the message embodied, over and over again. Only then do we find the courage to claim it and to live from it.[3]

Noah reminds me there is a better way to live and respond to the world, a Third Way. Often times, for his brain, this different way is his default and I am left wondering which of us is really “disabled.”

How beautiful upon the mountains

are the feet of him who brings good tidings,

who publishes peace,

who brings good tidings of good,

who publishes salvation,

who says to Zion, “Your God reigns.”

(Isaiah 52:7)

[1] Henri J.M. Nouwen, Adam, God’s Beloved (Maryknoll, N.Y.: Orbis Books, 1997), 15.

[2] Ibid. 17.

[3] Ibid. 36-37.

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Shaping Special Hearts: Special Needs & Training 10/03 by CMConnect | Religion Podcasts

Join host Vangie Rodenbeck, and special guest Rebecca Hamilton, as they unpack issues related to Training Volunteers in Special Needs Ministry.  Listen as they debunk popular “myths” related to training volunteers for disability-related ministries and learn about two amazing resources you can use to train and organize volunteers today.

Rebecca Hamilton is Director of Ministry Operations at Key Ministry.  Since joining Key Ministry in 2006, Rebecca has enjoyed blending her Christianity and love for children with the training and experience she has had in the non-profit sector.

 

Shaping Special Hearts: Special Needs & Training 10/03 by CMConnect | Religion Podcasts.

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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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Shaping Special Hearts: Respite Ministry 09/17 by CMConnect | Religion Podcasts

Ever wondered how to be make a HUGE difference in the life of a special needs family in just one night? Do you wish you could find a way to connect your church to this special area of service in a manageable way? Please listen to this episode of Shaping Special Hearts to be blessed by Lori Millwood from Blackshear Place Baptist Church in Flowery Branch, GA.

 

 

Shaping Special Hearts: Respite Ministry 09/17 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: 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: Special Needs Overview 07/23 by CMConnect | Blog Talk Radio

I really enjoyed today’s episode of Shaping Special Hearts! David Glover has an excellent perspective on our culture as it relates to disability ministry. It is something that makes everyone think about how our culture assigns identity and value. Give it a listen.

 

Shaping Special Hearts: Special Needs Overview 07/23 by CMConnect | Blog Talk Radio.

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A Whole Lotta Shakin’ Goin’ On

I despise change. Maybe it is my autism showing. Yet I confess it willingly so that you might fully understand how difficult it is for me to open myself up to new things. I hope you will appreciate just how challenging life is right now when I expand on how many things are being “shaken up” right now.

Three years ago I started blogging to help me process some of our struggles with autism. To my surprise I found an audience for both our pain and struggle as well as our victories. Many members of this audience either know us personally or have loved ones with a disability. But some of my readers identified with our struggle because the emotions tied into their own hardships can be reflected in our journey. Pain is universal.

I also began work on a Masters degree in Theology around the same time. The more I studied about God, the more I reflected on his work in my life and in the life of my son. I had always been haunted by issues surrounding spirituality and autism. Questions like, “Will Noah every understand himself as in a relationship with God?” were answered along the way. But more abstract concepts required further study. For instance, if Noah is neurologically “damaged” (clinically speaking), what does it mean to say he is still made perfectly in the image of God? Faithful readers of this blog will note that, very often, we are not treated like we “look like God.”

So I spent the last year of my life writing a thesis on that very topic. My thesis statement reads: In contrast to classic scientific, popular, and even some Christian assumptions about disabilities, a theologically responsible perspective calls us to recognize that neurologically disabled people are just as human as neurotypical people because they, too, are created in God’s imageThis may seem like common sense to you, but if you have ever been treated as “less than” because of a disability, you understand. Trust me, this is a whole new way of imagining what humanity looks like AND what God looks like. It has been the experience of a lifetime. And today, at 3pm, I defend that thesis. (Pray saints, pray!!)

To shake things up even more, I have developed a relationship with Standard Publishing in a way I never could have imagined. They heard the message communicated through my thesis and in my blogs and thought, “Hey…there is something to this the world needs to hear!” I have been partnering with them to write lesson amendments that can be used by churches include children with special needs in classrooms with “normal” (typically developing) children. This relationship is growing and more resources are being created each quarter. I will be posting a link to those resources as soon as possible. Please don’t laugh when we see me referred to as their “Special Needs Expert.”

Because having my picture on resources wasn’t uncomfortable enough, this partnership has led to another one. This winter I presented several workshops for Standard Publishing at Children’s Pastor’s Conference in Orlando and San Diego. INCM (International Network of Children’s Ministry) sponsors this event. I will be featured on in their magazine in an interview about “Special Needs and The Church.” I also shot a few videos about “Recruiting in Children’s Ministry” for them that will be featured on their website next month. (Again, all of you who know me personally are aware just how completely out of my comfort zone I am at this point not only in telling you this, but in my life in general.)

This partnership – you guessed it – led to another. And here is perhaps some of the biggest news and the reason for the change of blog site.

Starting May 14th, 2013 I will begin hosting an internet radio show called “Shaping Special Hearts with Vangie Rodenbeck.” (gulp…there, I put it in writing) This show is co-sponsored by Standard Publishing and cmconnect. The goal of this every-other-week show is to have conversations around topics in special needs and disability ministries. I pray that this can be a resource for churches, ministers, volunteers and parents to help us show the world not only HOW to minister to the disabled but also how the disabled minister to US by showing us what God looks like in unexpected ways.

So this is a new blog site for a few reasons…

  1. I will be able to link resources that I am writing more easily from this site.
  2. The radio show will be embedded on this site and easier to find.
  3. Blogging – which I promise there will be more of – will be easier for people to access my visiting vangierodenbeck.com. The blog will be the main page of this site.
  4. There will also be a page “About Me” dedicated to letting people know how I have chosen to see the “holy in the common place” and the image of God in our struggle.
  5. And for people who wish for me to consult or conduct a seminar for their church or school, there will be a page on this site dedicated to that as well.

I think that is about as uncomfortable as I can possibly get. But I was inspired this morning by a video posted by a Facebook friend in which her child is having a “sensory meltdown.” It brought back all the memories of what we have lived through and continue to struggle with. Her transparent plea for understanding and further education about the struggles families with disabled children have pushed me to post about A Whole Lotta Shakin’ Goin’ On in my life. None of my pain and experience can have redemption if I don’t help someone through a similar struggle.

I am sure your question is: How is Noah handling all of this? Noah tells me all the time that I am “going to be famous because of him and his autism.” He is quite the advocate for autism and has started research of his own. He likes to call himself my “autism guinea pig” with a sly smile on his face. It isn’t uncommon for him to say, “Tell people how much autism is like God.” He is quite the evangelist.

So more stories will follow. More resources will be posted. And you can follow the radio show if you are so inclined. If you know of anyone who can benefit from this, pass it on. I’m always looking to learn from others about ways we can show the world that disabilities aren’t the worst thing that can happen to a family.

Stay tuned to hear what I’ll be involved in next. I’m thinking “Autism – The Musical!” I envision something with banjo music and tons of repetitive motor movements. I want Carrie Underwood to play me:)