The Autism Gospel – vangierodenbeck

Unmet Goals: An IEP Story

Posted on October 29, 2018 by vangierodenbeck

Our Individualized Education Plan turns 15 years old this year. While most of my time now is spent looking toward our immediate future and how we will transition out in just 18 months time, I always get reflective after our annual meeting. This year was no different.

I was surprised to find, as we were cleaning up old language and editing parts of this adolescent document, that many of our goals are no longer needed. We no longer need mathematics goals. His writing goal that was once in place because of such weak expression is obsolete because his teacher notes that he now “writes with voice.” Because he is reading at or above grade level, reading goals could also be deleted. In general, Noah’s 3.5 grade point average has marked him as a success of the Special Education System. This child who was once predicted to never read, write, or speak is now expected to receive college scholarships.

But some of our goals still go unmet. Objectives are still in place to assist with general anxiety in the classroom. Articulation goals may stay in place for Speech because the “r sound” still eludes. And the ever-daunting Social Skills Objectives remain as they have for longer than I can remember.

Among them, “Noah will initiate conversation with peers….”

As the team honestly assessed Noah’s lack of interest in this area, one of his teachers spoke up with a story that still has me pondering. It seems that not long ago Noah witnessed an accident in the hallway. One of his peers accidentally tripped another student as they knelt in the hall to adjust their books. The boy who fell became immediately angry and moved toward the other with raised voice, ready to fight.

Noah’s teacher said, “Before I knew what was happening, Noah stepped out between them and began to try and diffuse the situation. Noah said, ‘We all need to relax. He didn’t do this on purpose. I saw it; it was unintentional. This was just an accident so we don’t need to fight about it.’”

Noah the Peacemaker, unwilling to “initiate a conversation with peers” (a.k.a. small talk), is completely willing to speak into the middle of conflict to stop violence and make amity. Everyone smiled and a silent understanding was reached that perhaps this unmet goal wasn’t the tragedy it seemed.

Noah will speak up when it is necessary. He will speak truth. He will speak reconciliation. He will speak harmony. He will speak resolution. He will speak compromise. He will speak peace.

But he doesn’t do small talk. This goal remains unmet. And I think I am good with that.

The Autism Gospel

Can You Drive?

Posted on March 28, 2018 by vangierodenbeck

I never really knew how old she was. I never wanted know her like that even though no part of her inspired fear; her gentleness was evident to all. What my sister and I did know was what we had been told – that she was “special,” and “more like a little child.” We spoke to her each Sunday at church, more because of her friendliness than our manners. Once we grew to be teenagers, the topic of conversation would begin to follow a single thread for the remainder of our years together. On The List of Things I Wish I’d Known to Do, stopping to really spend the time with her makes the top ten.

Her name was Sadie and she was probably about 10-15 years older than me. Through her thick glasses she would scrutinize us happily as she made conversation each Sunday after services. I confess that sometimes we avoided her, not having any experience or education about how to communicate with people like Sadie. But when I approached driving age, she sought me out each week to ask the question that seemed to burn in her consciousness: “Can you drive?”

I would answer according to the circumstances of the time. “No,” before I was permitted or licensed, and then “Yes” later. This was her conversation starter each week: “Can you drive?” I remember thinking that this must be all she knew to talk to me about. I now know the reality of how defining the answer to that question is for people like Sadie.

When I began to accept all the things my own child, who is affected by disability, would probably never do, driving was at the top of the list. This isn’t just because it is another rite of passage for young adults, which I would miss out on. It wasn’t until I started my life as his advocate that I understood how the ability to drive delineates every opportunity open to them for their very precarious futures.

Driving means potential employment, independent living, a bank account, and all the amenities thereof. But not being able to drive, well, the options suddenly narrow to a trickle. It means living near or with family. Or, it can mean living in a city center so you can have access to public transport. For some, the easiest answer is early placement in a group home with employment in a sheltered workshop. The answers of how to live as a person with a disability when you can’t drive are varied (and possible), but our potential was definitely limited.

My sister and I used to laugh on the way to Sunday afternoon lunch at the Piccadilly Cafeteria as we chanted, “Can you drive?” Then it seemed like such a silly question. But on this side of life, I hear her saying “Can you drive? Because I can’t and it has changed everything for me. Tell me about driving. Is it fun? Do you like it? Can you go places? What kind of places do you go? Would you take me?”

When Noah announced that he wanted to learn to drive because he knew it would be important to being an independent adult, we realized that he knew the limitations he would face without a driver’s license. It’s been tough. It’s a very social activity (more about this later) that taxes his mental muscles each time he gets behind the wheel. But we’re 8 months into the process and Noah is driving.

But each time he gets behind the wheel, I see Sadie’s giant smile and kind pair of eyes hidden behind thick glasses. I see her awkward stride making her way up the aisle, or through the streets of our town. And I hear her plaintive plea – “Can you drive?”

And I whisper, “Look Sadie, we can drive.”

Living Peacefully, The Autism Gospel

Waiting for Peace

Posted on December 1, 2016 by vangierodenbeck

It is Advent, a time of waiting. As we wait in places that are dark and uncertain, we hear the voices of the prophets promise the coming of one who will bring Peace, establishing a kingdom marked by Justice and Righteousness. So we wait in silence, desperately trying to block out the noise of the world so we can expectantly wait for our Peace. We strain to listen for words of Hope in these small spaces where we live and work.

For as many years as I can remember, we have struggled with what we hear. Noah’s autism has gifted him with almost super-human hearing, so we often struggle to block or dampen some of the noise in our environments. These environments include school, home, church, restaurants, cars, movie theaters, and anything in-between. Events large and small are painful because he hears so much. Our noise canceling headphones have made us the object of many jeers and jokes. It is just one more way the space we live in is small.

It has occurred to me most recently that all we are really trying to do is hear very certain things, while we exclude other noise. This way of living seems offensive to many. We hear differently, perceive differently and learn differently. There is a beautiful brain between those headphones that most people will never take the time to get to know because it is “other” than themselves.

Likewise, the time of Advent is a time of listening and waiting. It is blocking out the competing messages that promise hope, but only bring emptiness. But many will never truly know it because it is something other than that in which they have come to find comfort. For those of us who constantly struggle to find even the small spaces of acceptance, Advent is familiar.

“The Advent season is a season of waiting, but our whole life is an Advent season, that is, a season of waiting for the last Advent, for the time when there will be a new heaven and a new earth.”[1]

So we wait for this Christmas Advent and for the great Advent to come. I live in constant hope that sometime before that great and final Advent that we will be a welcome part of a community – something that is not merely tolerated as “other.” But if we live until that day without “receiving the promise,”^{^[2]} we will practice Peace while we wait.

⁵For God alone my soul waits in silence,

for my hope is from him.

⁶He only is my rock and my salvation,

my fortress; I shall not be shaken.

⁷On God rests my deliverance and my honor;

my mighty rock, my refuge is God.

⁸Trust in him at all times, O people;

pour out your heart before him;

God is a refuge for us. [Selah] ^{^[3]}

[1] Dietrich Bonhoeffer, God Is in the Manger: Reflections On Advent and Christmas, 7/31/10 ed., ed. Jana Riess (Louisville, KY: Westminster John Knox Press, 2010), 2.

^{^[2]} The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Heb 11:39.

^{^[3]} The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Ps 62:5–8.

Living Peacefully, The Autism Gospel

Healed on the Sabbath

Posted on August 23, 2016 by vangierodenbeck

¹⁰Now he was teaching in one of the synagogues on the sabbath. ¹¹And there was a woman who had had a spirit of infirmity for eighteen years; she was bent over and could not fully straighten herself. ¹²And when Jesus saw her, he called her and said to her, “Woman, you are freed from your infirmity.” ¹³And he laid his hands upon her, and immediately she was made straight, and she praised God. ¹⁴But 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.” ¹⁵Then 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?¹⁶And ought not this woman, a daughter of Abraham whom Satan bound for eighteen years, be loosed from this bond on the sabbath day?”¹⁷As he said this, all his adversaries were put to shame; and all the people rejoiced at all the glorious things that were done by him. ^{^[1]}

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

Today he reads. He writes. He speaks.

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

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

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

“Woman, you are freed from your infirmity.”

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

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

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

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

And we are healed on the Sabbath.

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

Living Peacefully, The Autism Gospel

Beautiful, Peaceful Feet

Posted on May 1, 2016April 30, 2016 by vangierodenbeck

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]

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.

Living Peacefully, The Autism Gospel

Going Forth

Posted on April 19, 2016 by vangierodenbeck

Everyone asks, “So aren’t you thrilled to be back in Atlanta?” I know the expected answer is a resounding “YES!” This is, after all, my hometown. No one is asking for an interpreter when I speak in public, and I can buy Dukes Mayonnaise at my local grocery store instead of having it “imported” by friends. But re-integrating ourselves has been challenging. Everything is comfortingly the same and disconcertingly different all at once. As our little family has healed, this is one of the things we have had to come to terms with.

I have been comforted by how present and faithful God has been to Noah during this transition. I can’t imagine how absurdly difficult the past nine months have been for him. Autism makes us far less portable than the typical family. There is just no escaping this fact. His entire life is one amalgamation of sensory experiences that provide anxiety on some level. To one degree or another, he spends most of his day working to cope with his environment. At times, it is clearly painful for him yet the disquiet of reorientation is part of his daily experience.

We’re at a new church home that we are very excited about. I’m sure I’ll be sharing more about them, but know that this kingdom outpost has already embraced Noah with enthusiasm. But that didn’t stop me from reverting to old habits a few Sundays ago when we entered only to find rhythm instruments placed throughout our worship room. I immediately began an exit strategy for Noah’s eventual meltdown due to the over-stimulation during worship.

Soon, our worship leader encouraged us to pick up an instrument and join in a song. Jason and I didn’t move, afraid to set off panic in Noah. I don’t know if we were hoping he wouldn’t notice what was happening, or if we were just too tired at the moment to do anything but rest and hope that everyone would understand when Noah became distressed. Much to our surprise, neither thing happened. Instead, Noah began to search for the nearest instrument he could find and, grabbing a tambourine, played along in perfect rhythm.

Astonishment doesn’t begin to describe our reaction. Even though we are new there, everyone who stood as witness to Noah’s act of praise was surprised.

We have come out of a wilderness not of our own making. Some of you may understand better than others. More than ever before, I feel enveloped by an everlasting love that has been faithful to us. Maybe Noah does too, and he just had to rattle a tambourine – despite the discomfort the noise causes his brain.

And me, well, I wanted to dance along.

Thus says the Lord:

“The people who survived the sword

found grace in the wilderness; when Israel sought for rest, the Lord appeared to him from afar. I have loved you with an everlasting love; therefore I have continued my faithfulness to you.

Again I will build you, and you shall be built, O virgin Israel!

Again you shall adorn yourself with timbrels,

and shall go forth in the dance of the merrymakers.” ^{^[1]}

^{^[1]} The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Je 31:2–4.

The Autism Gospel

Finding Grace at the Gym

Posted on June 18, 2014April 17, 2016 by vangierodenbeck

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

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

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

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

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

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

And then, we were the recipients of amazing grace.

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

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

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

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

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

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