Posted in The Autism Gospel

Can You Drive?

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.”

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Posted in Living Peacefully, The Autism Gospel

Healed on the Sabbath

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

 

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

Today he reads. He writes. He speaks.

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

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

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

“Woman, you are freed from your infirmity.”

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

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

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

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

And we are healed on the Sabbath.

 

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

Posted in 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.

Posted in Living Peacefully, The Autism Gospel

Going Forth

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.

Posted in Living Peacefully

Stillness…A Holy Habitation

It’s been over a year since my last post – one of the toughest years of my life. Those who’ve walked alongside me in my journey, realize the significance of that statement. Very little about it seemed “holy.” When it was time to renew this blog/domain, I made the decision not to renew it immediately. There were several reasons why…

  • I’ve got family who will follow this blog with the specific intent of discrediting me, and anything said here. They’ll say I’m a terrible mother and “Christian.” Don’t worry – those comments won’t be approved so you won’t read them.
  • I’ve wondered if I have anything left to say. Can I say anything else about Autism and our journey? Do I have any wisdom left to offer? Honestly, our life since diagnosis has shaped my theology in such different ways that it sets me in opposition with others more often than in agreement.
  • I’m just tired of running toward achievement, disappointing people and then walking back with my head down. I’m just ready to be still.

Faithful followers and readers of the blog might inquire how Noah is doing. I’m happy to say that he still surprises and encourages us daily through (not in spite of) his Autism. But this year has been really difficult for him as well. He lost ground that we were beginning to think he would not recover this time. Often we have felt alone and without a refuge for Noah and his needs. But once again, the combination of faith, love and a generous sense of humor has seen us through a dark night of the soul.

In the end, that was what helped reverse the decision to shut down the blog. I believe in our role as Christ-followers to serve as prophetic witnesses to our communities and wider culture. Our neuro-diversity has certainly set us in a counter-cultural place. Sometimes it seems to hold us there. But over time, I have come to see that as “gift” more than curse.

But through our struggle we have found peace. Noah pursues peace and sees goodness in unlikely places. As a faithful a witness to The Resurrection, Noah inhabits an existence where Jesus has truly ended war in the midst of struggle. As a family we strive to live peaceful, simple, and sustainable lives as witnesses to what we believe Resurrection Life will be when Jesus restores a new heaven and earth.

So in the tradition of the prophets that have gone before me, I think I’ll continue to speak and write. No longer running toward career or from criticism, I am happy to be still and proclaim the “good news” we have received. Stillness, after all, is a virtue.

 

There is a river whose streams make glad the city of God, the holy habitation of the Most High. God is in the midst of her, she shall not be moved; God will help her right early. The nations rage, the kingdoms totter; he utters his voice, the earth melts.The Lord of hosts is with us; the God of Jacob is our refuge. [Selah] Come, behold the works of the Lord,how he has wrought desolations in the earth.He makes wars cease to the end of the earth;he breaks the bow, and shatters the spear,he burns the chariots with fire!

Be still, and know that I am God.I am exalted among the nations, I am exalted in the earth!” The Lord of hosts is with us; the God of Jacob is our refuge. [Selah] [1]

 

[1] The Revised Standard Version (Oak Harbor, WA: Logos Research Systems, Inc., 1971), Ps 46:4–11.

Posted in The Autism Gospel

Finding Grace at the Gym

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

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

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

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

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

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

 

And then, we were the recipients of amazing grace.

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

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

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

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

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

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

Posted in Uncategorized

Ways to Make Your Church Inclusive on Easter

Special event Sundays, as a children’s minister, were always the most daunting. It was a steeple chase of greeting visitors, gathering extra supplies, resourcing volunteers, and (let’s not forget) sharing the Good News. But for me, what I dreaded the most was knowing that Noah would be completely overwhelmed by the entire project. And, completely selfishly, if there was a kid in the building that I wanted to be touched by the message it was my own.

But new clothes for special occasions are itchy. More visitors mean more noise and chaos. Special events mean special programming and a deviation from the “normal schedule.” At Easter there were beautiful lilies that lined the walls of our sanctuary but you could smell them on our hallway and it drove Noah insane. Then the whole lesson was about death (which was scary) and resurrection (which was so abstract). The entire day was a nightmare. I remember planting my forehead on my keyboard and sighing, “he is risen…this is good” over and over again.

Even if you “don’t have special needs kids,” consider reading this great information from Barb Newman and CLC Network. Implementing these ideas is simple and will enhance the worship service for most visitors and all typical children. And then, just in case you encounter a PURE family this Resurrection Sunday you’ll be ready.

Ways to Make Your Church Inclusive on Easter.

Posted in Uncategorized

The Autism Gospel – Believe

I was packing my well-worn suitcase for a speaking engagement at yet another conference. Always remembering to rehearse Noah’s weekly schedule in my absence, I called him into my room as I packed. We went over which members of our church were providing respite for us each afternoon, what he could have for snack, and other essential items on the week’s agenda. After reciting the plans, Noah asked what I was going to be doing. He knows that I teach about “people like him” and how to include them in church and school. He understands that I tell stories about our life together and how autism impacted our life. But he surprised me when he asked, “Mom, you won’t forget me when you are gone will you?

I chuckled as I placed more clothes and books in my suitcase. The idea that Noah is ever off my mind for more than five minutes is ludicrous. My entire life has become about telling our story so that others can find hope. I smiled and casually quipped, “Noah all I do is talk about you everyday in lectures while I am gone. How in this world could I forget you while I was gone – even if I wanted to? For heaven’s sake Noah, if it weren’t for you I wouldn’t even have a job.”

I turned to continue my task but was brought to full attention as Noah came around the bed and placed his hands on my shoulders. Looking me full in the face and straight in the eye, Noah imparted a wisdom that I can only see as more of our autism gospel.

“Oh, Mom. You say you wouldn’t have a job if it weren’t for me, but I think you wouldn’t have a job if it weren’t for you because you were the one who always believed.”

Walking away satisfied, Noah went back to his room to continue building Legos. Completely humbled, I sat on the floor at my bedside and wept. I wept for all the days that I left therapy completely defeated because he wouldn’t cooperate with the therapist. I wept for the day I was told he was being moved to a behavioral unit at school because he was incapable of cognitive processes. I wept for all the times I came upon him sitting in the hallway outside a Sunday school classroom because the commotion and excitement of the lesson frightened him. I wept for all the moments over all these years when I had perceived that we had failed.

And I wept not because we have proved people wrong or in gratitude that we have come so far, but because Noah recognized all of those moments not as monuments to failure but rather as milestones in a journey of belief. Mainly, I think I believed because my other option was so dismal. I could either choose hope or desolation. I could continue to work on small, manageable solutions to our difficulties, or I could just stop and accept despair. Mostly, I just hoped there was more to us than it appeared.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. [1]

Noah sees our story as one of hope through a series of seeming defeats where someone chose to believe against all odds. Perhaps we should all take a page out of this autism gospel and choose to believe in the unseen in light of eternity. I think that is where we could find hope and peace. I know that Noah has.

The gospel of this autism moment tells us that someone needs you to believe in an unseen hope. There is probably someone who needs you to see past the defeat and unmet expectations. Believing in Noah didn’t look like tons of new therapy techniques or another medical solution to our crisis. Believing didn’t involve continual work to meet his IEP goals. We did those things, but that wasn’t the act of believing. Believing didn’t require me to have an immediate solution. Believing asked me to have hope in spite of the fact that I didn’t have a solution.

I offer no magic solutions on this Autism Awareness Day. I only propose that we choose to believe that all of us are more than our deficits. Noah taught me the value of just believing in the potential of what we cannot see. Maybe soon we’ll have Autism Acceptance Day where we celebrate how different and unalike we are.

But until then, just believe.

 

[1] The Holy Bible: New International Version (Grand Rapids, MI: Zondervan, 1984), 2 Co 4:16–18.

Posted in PURE Ministry, Radio, Uncategorized

An Answer for the Pain

She approached tentatively from the back of the room where my team was leading a workshop about our special needs friendly VBS. When she reached me she excitedly said, “I didn’t know you had been a part of this VBS! I was in your special needs workshop this morning about inclusion. I’m just trying to get everything I can about special needs while I’m here.”

At that point I recognized her from the top of her head, which is all I had seen during my workshop because it was all that was visible as she frantically scrawled notes trying to take down every word I had said. We talked briefly about the VBS and how exciting the theme was. Then she posed an unusual question.

“Do you think I could do this with four special needs kids. Do you think we could save four with this?

Something in her eyes conveyed that she wasn’t using “save” in the salvific sense and something in my eyes revealed my confusion at the question. Immediately her eyes began to pool with tears. Taking her arm, I pulled her away from the crowd and said the words that are sure to reveal much more to me than any sales pitch – “tell me about your ministry.” As the tears coursed freely down her face she told me the following story.

She began by describing a familiar scenario. There was a special needs mom in her church with a 17-year-old son with autism. She talked about the struggles her ministry had seen this family endure for years, like how much trouble the mother had holding down a job because of the need to care for her son. She talked about the issues that mother had getting therapy paid for by the insurance company and of her battles securing the “least restrictive environment” in public school. She told of the personal stress and illness that mother had endured, as she seemed to be in a constant state of struggle.

Then her tears began to flow with such abandon that we found a more secluded place to finish her story. This children’s minister then told me how difficult it had been to engage the son at church. She admitted to feeling overwhelmed and frustrated at the prospect of either including him in the classroom or providing a quiet room where only he and a caregiver could be alone. She said that the relationship with the family was on again off again for years as the stresses of daily living would sometimes cause them to drift away from church attendance.

“We just didn’t know what to do,” she continued, “We wanted to help, we really did – but we just didn’t have the resources and the tools to know how to. But if we’d known what to do, it wouldn’t have happened. She was so desperate. We knew it. And this winter she took her son and killed him and then committed suicide.”

Overwhelmed by a familiar pain, I had nothing to say. In my silence, she continued to share but as she did a new resolve filled those tear filled eyes. “So that is why I’m trying to get all the information I can about this while I am here. We’ve identified four children in our church and community that we can minister to if we have the tools. So that is why I was wondering if you thought this VBS could help us save those four. We just want to save those four. We can’t lose any more families because we didn’t know what to do.

I spent lots of time with her that day and she stopped by the booth several times during the week. After explaining the benefits of the VBS resource, we talked about stress and grief as I willed all the information from my Pastoral Counseling class to the front of my brain. But the truth of the matter is that I understood not only the desperation of that ministry but also the hopelessness of that mother.

I know the desperation that comes with being at the end of your physical and emotional resources. I understand the depth of loneliness that can creep up unexpectedly from behind. I remember when invitations to birthday parties quit coming, as we began to slowly lose our peer group. And I know what it is like to try and visit the one place believers in Jesus go for hope and be told that the church isn’t equipped for children like yours.

And when there is no hope in Jesus, there is no hope at all.

The most startling part is that this is not an isolated incident. It happens in Lawrenceville, Georgia and Huntsville, Alabama. From Michigan to Illinois to Los Angeles, California the desperation is wide spread. Before you start a stinging reply, I realize there is more at play here than just autism or special needs and that these mothers had to be in a fragile mental state to take the lives of their children. But I humbly submit, from this side of the fragility, that they probably didn’t leave the hospital with that new born baby all those years ago thinking they would be in this position one day.

No one prepared them for twenty plus years of sleepless nights…or the divorce…or how little their family would understand the daily steeplechase their life would become. They received no formalized training before taking that child home that would even begin to equip them for the job ahead of them. And I call it a job because it is their – track with me here – full time job. It’s nearly impossible to find a job that will allow you to be at home when your special needs child is during their school years. After school programs and daycares balk at the prospect of adding special needs children to their roster, again stating that they are under-resourced and not equipped to manage these kids. And even if you can find work during those school years, at age 22 everything changes. Suddenly your child ages out of the school system and then you understand what under-resourced really means as you and your child stay home all day and neither of you can work or plan for a future.

But all is not lost. In the eyes of that bewildered children’s minister I find hope. Churches are beginning to recognize that:

  • 1 in 5 children are diagnosed with a disability
  • More than 11 million Americans need assistance with everyday activities because of a disability
  • Families with special needs children have a higher than average level of stress in the home
  • When a child with special needs is born into a marriage or a child becomes disabled through accident or disease, 4 out of 5 (80%) of those marriages end in divorce (90% when the disability is autism)
  • One study revealed that mothers of special needs children live, on average, 10 years less than mothers of comparable health because of the elevated cortisol levels in their system
  • And these families are often turned away from well-meaning churches full of earnest Christian people because they are uninformed, under-resourced and ill-equipped to minister to this population

This story, and many others like it, is why I do what I do. Seeking to resource the church is my primary goal. One of the best ways to do this is through relationship. At PURE Ministries we have created a network of churches that are doing ministry to these hurting families. Suddenly, churches don’t just have to figure it out as they go along anymore. They can have a relationship with another Body of Christ who can identify with that problem and tell a church how they approached ministering to that PURE person and their family. Additionally, more resources are provided and are under development at PURE Ministries at no cost for churches.

The Shaping Special Hearts Show on blogtalk radio is an effort to continue conversations about special needs ministry. Each guest brings with them years of ministry or special needs experience. We’ve discussed curriculum and classroom adaptation, ministering to families in crisis, making church events inclusive to special needs families, respite care and many other topics. These conversations are a FREE downloadable resource for churches and individuals seeking information and looking for relationships they can cultivate to equip themselves for ministry.

I believe Christ’s church can be an answer for the pain of this world – even the pain that renders mothers of PURE children without hope. And together, we can save those four and so many more.

Posted in Uncategorized

The Autism Gospel – Hope for Misfit Toys

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

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

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

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

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

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

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

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

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

2 Chronicles 16:9

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

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

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

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.  2 Cor. 4:18

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

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