autism

Revelation Trumps Rules

By. J.C. Mitchell

I remember some professor in class explaining that for Jews keeping Kosher, or the rules for Shabbat, had different levels of interpretation, which is   why some groups define the rules differently.  I remember in college lighting the match for a Jewish roommate for Shabbat, and I was confused as to why using a lighter or match could be considered work.  This prof explained that some people added human layers of rules in order to assure they were following the Divine’s Desire.   Explained that way, I am reminded of how rules can be comforting.   We know what to expect, and within a rule you can convey great nuance as well as simple restrictions; this is found in the Ten Best Ways, the Ten Commandments.  Yet as we know, rules can be left to interpretation.

Not only are rules as subjective and as personal as the person who lights a Shabbat candle, we often desire the social other to follow the same rules. This is how we design our religion and our religious practices.  However, we balance rules with revelation.  Amos even laments our rules (5:21-24):

I hate, I despise your festivals,

   and I take no delight in your solemn assemblies.

Even though you offer me your burnt-offerings and grain-offerings,

   I will not accept them;

and the offerings of well-being of your fatted animals

   I will not look upon.

Take away from me the noise of your songs;

   I will not listen to the melody of your harps.

But let justice roll down like waters,

   and righteousness like an ever-flowing stream.

 

Jesus takes on the deeper religious rules of scapegoating and sacrifice and stands up to continue living.  Jesus is the revelation that our desire is to follow the desire of God and not the rules humans have layered upon our lives to assure our own order or comfort, often hiding the blood of those sacrificed for peace.

Nonetheless, it seems that the churches today that have more rules also have more people in the pews.  We claim to desire a relationship with Jesus over simply following rules. However, recently I had a revelation of my son using a napkin.  My seven-year-old son has autism and I can tell you simply making the rule, “use your napkin,” does not work.  Months of us reminding him positively, after every bite, has created a situation where he now wipes his hands and face as often as most boys his age, perhaps even a little better, as he has incorporated this act into his ritual of eating.  Not by a rule, but through the intense relationship. 

This is how everything is taught. For our child, including safety rules like, “you can’t go outside without permission,” would be as effective as me making burnt offerings.  So we make the ritual of asking “Go outside, please,” part of his routine of going outside, through the intense relationship of us making that a positive expectation, but is that not what we need to do as the church. 

We are commissioned to be the Church, The Resurrected Body of Christ, to be the revelation in the world; not rules.  Rules are easy--trust me for I know--as I desire to make a few rules for my son, but alas, I will need to stick to the relationship of revelation, and that helps with Church as well.

A little more exciting then napkins and door, here we are feeding birds at the zoo.

Dancing the Full Spectrum of Love

By J.C. Mitchell

It may be absurd to write about dance (and especially contemporary dance), for it is best experienced and felt, rather than described.  Therefore, I write this to encourage you to wrangle with the questions I see asked, answered, and asked again, through the human body.  Of course, if you are in the Pacific Northwest, this is a specific plug, but I hope others will find dancers and choreographers (and/or other artists) in their own local area to support the art and to support your spiritual growth. 

This weekend I will experience Whim WH’im, a contemporary dance company, starting with Olivier Weaver—the beloved artistic director--very emotional and vulnerable piece (per everything I have read and heard) and I believe you will simply be intrigued by the title: A Disagreeable Tale of Duplicity.  So while I encourage people to be more vulnerable, here will be twenty minutes of vulnerability in public, where we as the viewer can add our own layers of story. 

With Annabelle Lopez Ochoa’s Delicious Pesticides, the audience will get to revisit Pulp Fiction, where I hear the absurdity of violence will be explored (such as it was in the film).  To help with this, some of the movements are based off of the movements of insects as Annabelle shares with Victoria Farr Brown at the Whim W’Him Blog, “Insects don’t have an ego, […t]hey work together like one organism.”  Now are you intrigued, at an exploration of culture and violence, where we may be acting as one organism? This is only the conversation prior to these performances.

You may be into painters, playwrights, or filmmakers; for me, the idea an artist can convey a message (not just a story) without words is very special to me, as language is a struggle for my son, and even before him I had been drawn to this language, because it touches me in a way I can’t describe, which is of course apropos. 

Parents read a child’s body language, but my personal experience of having a child with communication delay has made this language of movement so essential.  From our parental hands being thrust towards a wanted cookie, to him saying, “I want cookie, plzzzz” we have appreciated this very slow dance and have learned communication can be clear without words.  We draw him into this world of language, with the appreciation of his own movements.

So while I can get up in front of a room and discuss and explain complex theologies, and explore these thought-provoking questions in essays, can I, like my son, delve into the inner emotions of humanity without words? 

The choreographers and dancers engage us to do just that, and I encourage you to not sit this one out (be it here in Seattle or in your area), for someone is dancing.  

IMG_20160414_104535.jpg

And yes we do slow down for some paintings, too! 

 

Pass the Ketchup Or How Emmaus Reminds us to Set an Open Table for All Ages and Abilities

By: J.C. Mitchell

Walking to Emmaus, are you?  I hope so. I think Luke purposely does not name Cleopas’s friend, so that everyone can put themselves in this Resurrection account.  Luke adds this Resurrection scene seven miles outside of Jerusalem; that is, just outside the center of power.  The witness is not one of the eleven, but one obviously in the know.  Now this story, which happens on the day of the Resurrection, is only written about by Luke, and I believe it is a perfect reminder of inclusion of all in communion: An Open Table, which is always important and a great way to remember it is Autism Acceptance & Awareness month this April.  

 It seems that the two walking along had different interpretations of the recent murder of Jesus and the news from the women.  The Greek suggests that they are in a debate throwing ideas back and forth.  I imagine it is emotional; maybe not quite as heated as Bernie supporters and Hillary supporters, but something like that.  Jesus arrives, and is not recognized by our inconsequential people, and explains everything from Moses to the events of that morning, and they/we still don’t get it.  I have had people ask me, “Why Luke did not record Jesus’ words about the Hebrew Scriptures?” and I reply,” That is exactly the point.”

Jesus is not interested in leaving us with more Scripture; Jesus leaves us with the Table.  This is exactly where I and Cleopas know Jesus, and that is truly amazing, for we may still have different interpretations, but we are united after this Resurrection moment revealed in the Breaking of the Bread, to go back to inform the eleven with authority. 

Currently my son who is non-conversational (talks only for basic needs) is offered Communion and only takes it when it is delicious bread.  Once I had to hide the Hawaiian Loaf that was brought in (by a congregant that refuses to use sourdough, because Jesus is Sweet not…).  The whole congregation said, “let him have some,” but I reminded them that I already said no (by the way, most of them are great-grandparents).  I will continue to bring him to Communion services in worship and at home, for this act of eating together is truly the act of community, thus I cannot limit it to simply the Table in the Church, or sanctified by such an institution, even when I am the clergy doing such a thing.  I find it seven miles outside with the sojourner or resident alien, not just my beloved liturgy. 

 For even if you were to hear the explanation of the Resurrection from Jesus Himself, you will still not get it; thus my son’s interpretation and experience at the Table is as valid as my own. For Jesus left a simple message, eat together and love one another, and both my son and I can do that well, and with anyone willing to pass the ketchup.  

(UN)Resolved Baptism Rites

[Best of [D]mergent 2015]

By. J.C. Mitchell

This entry is part of the UncoSynchro blog, a writing collaborative effort from #Unco14 focusing on subversive themes of faith and life. The topic for January is (Un)Resolved.

Why did John baptize Jesus?  There are many answers, but the question is how did Mark, Q, Matthew, John, and Luke, handle John baptizing Jesus in the Jordon? They clearly marked it as the beginning of Jesus’ ministry, and thus the passing of the reigns from the one in the wilderness to the one that would take on our culture’s violence through death itself. 

Having grown up in the Roman Catholic tradition, I found baptism mysterious.  It was not the ritual or the idea that it may have washed sins away, but because we referred to this important rite that happened before we could establish memories.  This ritual of entrance into Christendom required no participation.  I had issue with this when I found myself exploring my faith in the protestant world, which led me to the Baptist mindset that we of the Christian Church (DOC) uphold. 

I do not believe any human being can do anything to deserve the grace, the forgiveness, and the love that is represented by the water, but I felt it must be much more meaningful if the ritual was engaged by the one being submerged.  I was once invited to Cokesbury to be part of the brainstorming team for their new Confirmation Curriculum.  I was already a DOC Minister, but I had been working as an Associate Minister in an UMC church so they simply assumed I was of their tradition. It became evident when I spoke of making Confirmation something special, like Baptism.  And this is really the only difference, or at least should be, when we baptize.  For we uphold one baptism as a reflection of God’s Grace, not human action what so ever.

So today I uphold our tradition in the denomination I am ordained, but I am not resolved that this is correct.  It is true that we are open to accepting baptism from other traditions and we believe it is God’s work, but what are we saying by doing it at an age of consent? I am aware from baptizing and confirming children that the understanding ranges, but I have felt it essential to commence with the ritual, even if I was not sure they understood.  However, I am not sure how to commence with a person that is not able to profess their faith, for we even call it “believer’s baptism.”  We Disciples understand the submergence is due to the individual’s profession of faith, even if we uphold it is God’s work, not ours.

This is a concern for me because of my son, and my work at the Church Open Gathering, for I know great people that will not able to profess their faith.  I know that many of you pastors and Christians will say there are obvious exceptions and my son and my friends should also be submerged in the Love of Christ.  But that is my point, that they should not be baptized as an accommodation, or worse with an exemption by the elders, for we understand that the work is done by the Divine, not by the pastor, the church, nor the individual under water. 

Unless we truly profess that Baptism is the work of God alone, we may not include everyone as equally baptized.  This may be why Jesus joined us without a profession of faith.  I find myself unresolved about the ritual, but I understand it should truly reflect the Grace for All.  

"!!!!!!!!!!!!!!!!!!!!!!"

By J.C. Mitchell


Star Wars was all over social media yesterday.  I like Star Wars, I grew up with that story.   I am not a fanatic and while I know much about the first six, I have not pursued knowledge about this upcoming one.  I figure I will eventually see the movie, mostly because my lovely wife will make sure, and my friends on social media will make sure I know too much about VII, good and bad for the months to come.  


The one thing that did make me interested was a picture of an African-American boy dressed as a Jedi, and a tweet from @afroeccentrix reading “My little bro who is OBSESSED w/Star Wars now gets to see a more diverse cast on screen. #CelebrateStarWarsVII.” And this my friends, has made me more interested in the movie, for how powerful is it to see someone like one’s own self on the big screen as it will be for the boy in the picture.  This is just a movie, but it is also a powerful expression of our culture, our stories.


This is why my son will dress as Chewbacca this Halloween.  My son has limited verbal skills. Recently he has begun speaking two, sometimes three, word sentences without prompting, and also he communicates beyond words alone, just like his beloved Snoopy, Woodstock, and Curious George.  There are many other characters he likes, but these have become very special to him, and it is hard not to notice these famous characters do not use verbal communication, while at the same time they are included.  So we thought we should introduce our son to Chewbacca, and while he has not seen the movie, we got an inexpensive costume using a stocking cap which he will tolerate on his head instead of a mask. I am aware that Wookies like Chewbacca speak Shyriiwook, but how we experience it on screen, the communication reminds me of communication with one who knows basic language, as it is tone that seems to communicate more than Shyriiwook words.


So while the characters our son already loves are cartoon animals, Chewbacca comes from a whole society that speak in a very guttural sounds, and is honored by many.  


But all these role models have fur (or feathers).


I cannot wait to know the Jedi who does not speak. 

 

 


Disability Advocacy in Your Community

By Rev. Mindi

April is Autism Awareness Month. In previous years for Autism Awareness Month, I have written about how to create a welcoming environment for families that have children and youth with autism in your church. However, there is a greater need within the greater disability community to help support advocacy. Here are some ways you can help become an advocate within the greater community, and therefore your church.

Did you know that you can be an educational advocate?

As a member of my local special needs PTA (Parent Teacher Association), I have let parents know that I am willing to go with them to IEP (Individualized Education Program) meetings. Students with special needs often have an IEP or a 504 plan (a 504 plan provides for accommodations for students with special needs; an IEP provides for individualized instruction and is much more detailed).  What do I do at those meetings? I am a non-anxious presence, there to provide support for the parent so they know they are not alone, as well as for the student. I ask clarifying questions. I am not there to take sides, but rather to encourage dialogue and offer support.

I am also an educational surrogate. I serve as a surrogate within the school district for students whose parents do not currently have custody and are not in the foster care system. I work to ensure that a student receives the supports necessary, which may include an evaluation for services and support and the beginning process of an IEP or 504 plan. I become part of the educational team.  How this happened for me is that I was asked to do this by a district official, who knew me as a parent of a special needs child, a board member for the special needs PTA, and as a local pastor. Since this time, I have now met two other pastors in other districts who also serve as educational surrogates in their district.

You can also join your local special education PTA, if there is one, or help form a community support network for students, as well as parents and educators of students with special needs. It takes the whole community, not just the family, not just the school—to help educate and support our special needs students and families.

Look for local disability advocacy organizations—they often need volunteer help—and partner with them. The ARC is a national disability advocacy organization with local chapters that has folks with disabilities on their staff and boards, and works to help individuals become self-advocates. With any disability organization, always check to see where its funding comes from, how its funding is used, and whether or not persons with disabilities serve on its board and staff. Persons with disabilities should be included in their own advocacy.

And as always, remember to include folks with disabilities in your church life. Folks with disabilities are already part of your congregation. They may be regular attenders in worship, but sometimes we forget that folks with disabilities can, and should, be included in leadership, worship, education and outreach—in other words, all aspects of the life of the church just as anyone else. And above all, be an advocate, wherever you are, for inclusion of persons of all abilities into our faith communities.

Rev. Mindi and her friend Rev. Danae Ashley launched Autism and Church in January. They are looking for more contributors, especially from adults and youth with autism, to write from their experience.

The Dichotomy of Function Hides a Even More

 

By J.C. Mitchell

Years ago I remember sitting around a fondue pot with my friend Dick and many others.  Dick was at that time an octogenarian, and I was in my late twenties, and around the table were people of all ages in between.  One person observed how wise it was that Dick had friends of all ages and it was mostly through church he developed these relationships.  Dick had one rule: the word “old” and “young” were not allowed.  Older and younger were unnecessary, as age is relative.  This was a great lesson I have internalized.  Dick also mixed bourbon and sweet vermouth in a gallon container so Manhattans were easily at hand, but alas I do not have the energy to handle a Manhattan nightly, so I keep my vermouth and bourbon in their respective bottles in my cabinet.


So in the autism world you have heard the dichotomy of functionality.  Sometimes one is referred to as “High-functioning” and others as “low-functioning.”   It may seem descriptive but it is an arbitrary dichotomy that really does not say anything about the individual.  Using the illustration of age, one may call someone old based on their age, their fashion, their attitude, their appearance, or, based on the perception of the one saying the word, old.  This is the same with functionality, and it says nothing about a person with autism.


I must confess, having a son that barely communicates verbally, is far behind academically and socially  and is in diapers, I have desired to use the term “low-functioning” to make it clear what we are dealing with, but I remember my friend’s words about old and young, so I translated it to “lower-functioning” and “higher-functioning.”  But upon reflection this does not translate in the same way as age, for when you use these terms even as a descriptive it is only for those with the developmental delay and not for all people.  Thus even using “higher” or “lower” creates this artificial dichotomy just as much, and I was quite aware of it, but alas whenever talking to people about my son outside of the autism world (yes we have culture and it is just as nasty and nice as any other culture), I feel forced to use these overly simplified terms to help the person I was talking to understand as they felt comfortable.  


I knew it was a problem but until I saw a friend’s Facebook post that read, “Every time you say ‘High Functioning Autism,; I die a little inside,” I realized I had been badgered by the ableist mindset to use their terms, and even with my tweaking to say it more relatively I had been perpetuating the false dichotomy that is part of anti-autism mindset of our culture.  My friend makes it clear it is not a compliment nor a description that has any real meaning.  The only possible meaning is that one with autism who is given the descriptive high or low is not a normal person who simply proves how they function through other means.  The real dichotomy this functional classification is people who are autistic and those that are not, with an assumption those who are not are the most functional.

 
If we are going to say we welcome everyone in our churches (or anywhere) no matter their ability, let us not use language that assumes autism to be less a person.  And like me, let us learn from those that understand this dichotomy do have the voice to teach us, and not assume we understand from our biases. 

 

tip of the iceberg

tip of the iceberg

Ten Things You Should Know To Welcome People of All Abilities to Church

By J.C. Mitchell

1.    If you have had one or even a few people with special needs in your ministry, this does not mean you know how to welcome all.  Very often when I tell a pastor about my ministry at Open Gathering they start telling me their one success story (which I do enjoy learning from), but they do not seem to understand there is more to do to welcome all.  This is not unlike someone saying there is no more racism because Obama was elected president.

2.    Accommodation is important, but it is not in and of itself welcome.  Having a ramp at the back door may be a financial reality, but if the main entrance is accessible to all that is much more welcoming.  

3.    Having a cry room is great for babies, but children that are old enough to start learning to sit in the sanctuary may make noise. Suggesting that they should go to the cry room is inappropriate.  Yes, some parents would rather go to the cry room, even with a kindergartner or older child, but it should be their choice.  Many children with autism, for example, need to learn by doing the same thing, so going to the cry room the first time will become the way the child goes to church, creating an extra and unnecessary step in learning.

4.    Using person first language should be the assumed way of talking about a person with disabilities. (For more information check out Arc's Website)  Yes, there are some that use their different ability as a proud identifier, and if they desire to use a descriptive such as “aspie” of course use that when referring to them specifically, but one’s name is still preferred.  This is less about offending one with a different ability, but to help those to see the individual and not the diagnosis. 

5.    Do not diagnose.  You may be obsessive and compulsive, but that does not mean you have Obsessive Compulsive Disorder (if you suspect you do, you should get help as well as a diagnosis).  This goes with many diagnoses and when a person hears others being labeled incorrectly, you belittle those that actually live with that diagnosis.

6.    Avoid the word “struggles. “ Unless you say struggles as a descriptive of the way our culture accepts and includes people with different abilities.  

7.    Do know that life is harder, more expensive, lonely, and stressful for families with someone with special needs in the family.

8.    Never assume, as you know what that spells.  Thus keep this question in your pocket, “how can I help you?” rather than “do you want me to show you the cry room” or “Don’t you think your child may be happier to wait in the fellowship hall until Sunday School” (Most kids would be).

9.    Talk about this welcome openly and be open to places you fail.  It may be not possible to include every child in a program like VBS, but work with the parents to include all children.  Generally if you tell me, “Your son is welcome and we will figure it out” after I tell you he has a disability, I am much more suspicious than the church that asks specific questions with a desire to make it work, for the latter knows it is hard work.

10.    When a parent tells you their child has a disability or a diagnosis, refrain from saying, “That’s OK” or “I am Sorry.”  The latter to me is less offensive for it is honest, but the former is simply annoying, for who are you to tell me if it is OK or not?  I realize you mean well, but to say, “thank you for sharing” or bonus “thank you for sharing, and how best can I interact (or help) your child and/or you?” is ideal.  Often the reason we feel compelled to share with you that our child has a special need (or if one self-advocating) is that we think you should know, and we already know it is OK and at the same time awfully difficult.  So if you can go beyond the pleasantries, you will be much more welcoming.

11.    Bonus: Know that the work to welcome all will never be completed, and there is no program or book that will give you all the answers, but I do suggest these three books to develop a theology of inclusion:  

Vulnerable Communion by Thomas Reynolds

The Bible, Disabilty and the Church, by Amos Yong

The Disabled God, by Nancy Eiesland

 

Hearing is Believing; Listening to Autism

By: J.C. Mitchell

 

It is impossible to be in someone else’s head, yet many people try.  People ponder motive and intention as if they can truly know what one is thinking.  It is often a cause of conflict between people and groups, because the perceived intention or motive is a reality to one, and all parties contribute to the confusion and delay, as they would say on the Island of Sodor, where Thomas the Tank Engine resides; bet you didn’t expect me to go there, but that is my point: people assume more than listen. 

All of this gets complicated for those on the Autism Spectrum, and thus I was intrigued by Jessi Cash’s Blog Post, “When I Overheard a Conversation Between My Son With Autism and His Brother”.  She was privileged to overhearing one son ask her other son, “…what is it like being you?” and the resulting conversation was very interesting and helpful.  So much so I will wait till you read it to go on….

Now you know why I referred to Thomas.   I would love to ask this question to my son; however, he is still struggling with communication.  Currently my son’s communication is limited to grunts, hand pulling, and his communication device, with an occasional verbal word; most, however, are a result of parroting or echolalia (scripting).  So if I asked my son such a complex question I would not at this time engage in an answer that would provide such insights, like that gleaned from the conversation recorded above.  

Nonetheless, yesterday as I was driving the car and searching for a radio station, I stopped on a song, for lack of anything better, and stayed on this unknown song.  It was in French, and sure enough I had stumbled on a French Canadian Channel.  The song was simply the opening for a talk show, and I kept on the channel since I was only minutes from home.  Having studied French in high school, and was even president of the French Language Club, I know some of the language.  I can usually understand simple conversations, and I will proudly tell you that I often confused those who are francophones when I worked at Les Trois Petits Chochons, but I couldn’t keep up the charade beyond basic orders and issues, and had to admit I was not fluent. 

So I listened to the conversation on the radio, and at times I knew what they were talking about; the weather, and a movie, but overall it was all a foreign language to me.   I could simply note when they were excited or reflective, but not what the subject was.  That is when I realized that this must be similar to what my son experiences.  He understands what we are saying in specific contexts and specific words, most of the same words I know in French (yes, no, ball, animals, colors, etc). 

I share this simple observation, because for that 10 minutes of listening to the program, I realized how frustrating it must be to hear the conversation, but not understand it, I too found myself wanting to the change the channel, but that is not possible for him.  He certainly understands more than he communicates, and this epiphany of empathy is essential for us all to attempt, even knowing the answer to “what is it like being you?” 



Theodicy: The Question that Should Not be Answered.

By J.C. Mitchell

We love going to the zoo with our son.  The best part is seeing animals that we do not usually see, as well as open space to run.  We bring his iPad with his communication program on it and we practice saying things like:  “I see elephant”  “I see bird”  “I see lizard” and even more complex sentences such as “I like elephant.”  Our son engages better sometimes than other times, and there is of course always an “I want peanut butter & jelly” thrown in, as that is his favorite sentence to create.  So when we are in front of an animal I encourage him to press the appropriate buttons and/or I do it to model conversation.  Inevitably, the children that are nearby watching the animal move their gaze from the animal to us. 

None of them say, “Hello” or engage in a conversation, and worse, their parents do not stop them from gawking.  I bet if their children were staring at a wheelchair or a prosthetic they would at least be embarrassed and try to discreetly change their child’s gaze, and the great parents would engage in a conversation with the one that has a different ability.  Yes, they may wait to do it privately, but I am the one there and I would put money on that not being true.  I also hope you notice that it is quite ironic we are looking to teach our son to converse and the response is to stare and say nothing. 

I do have to admit that in some circumstances people are awesome, like when we went to ”Build-a-Bear” after the zoo (we had a gift certificate) and when we pulled out his iPad to respond what he saw at the zoo earlier, the sales person was wonderful.  She asked what he saw at the zoo, and he navigated off the zoo page and said, “I want peanut butter and jelly.”  She laughed appropriately, as I did as well.  Eventually he choose a black cat.  He loved watching the stuffing being mixed and he picked out a hat for his cat.  We named the cat and added a tutu.  However, most people are not as patient and kind as the sales person, and I noticed parents and other children staring at him as he enjoyed and squealed making his stuffed cat.

Honestly, the stares and the ignoring don’t bother me personally.  Well I lie, but I am so used to it and I know it is more about them seeing something new, than having anything to do with my son or myself.  The staring children are just curious and interested, which I totally understand, and I wait for the bold one that asks about why we use the iPad. I will probably tear up when I show that bold child, and perhaps my son will make a friend even just for that moment in front of the elephants.  The ignoring parents are probably pushing something down they do not want to deal with.  It reminds me of the fear some have seeing a body of a deceased loved one.  They do not want to deal with the image of mortality, or reality.

By ignoring my son, the parents are ignoring questions about their abilities, their children’s, and also why they are “blessed” and others are not.  It is the question of theodicy.  It is honestly the most important part of one’s theology: if you believe that God is good and is Love and is omnipotent, why do bad things happen to good people, and vice versa?  

So how do you answer this essential question?  Do you ignore it despite your children’s curiosity (or congregants)?  Do you make up excuses and exceptions?  The excuses include things like but not limited to: God gave us free-will or God never gives us more than we can handle.  Exceptions include but are not limited to: everything happens for a reason, we learn from our suffering, suffering creates character. 

None of these answer the question, which should not be ignored--but it should never be answered.  It must be lived and engaged.  If you start to answer the question, you will find that theology falls short and you end up with yourself or God as judge. 

When we gather with other families that have a child with special needs (or others with different abilities) the question why is never ignored, but answers are never provided.  The answer is lived by bucking normal.  This is exactly what we need to do as church: stop hiding from the hard question and stop trying to answer it; rather, let us live the answer: Love. 

just too cute not to share.  We named the cat Huckle.  

just too cute not to share.  We named the cat Huckle.  



Wandering and Welcome

By Rev. Mindi

It had only been ten minutes at the most, maybe fifteen since I last saw him. I had looked outside the window as I was finishing cleaning the kitchen and had seen him playing in the yard. Then I had sat down at the table and I swore I could still hear him just a few minutes ago.  Then JC came upstairs and asked, “Where’s AJ?” I looked outside and couldn’t see him. “He must have gone around the corner of the house,” I replied, but I wasn’t worried. While there was no fence on that side, there was a lot of tall brush that would be hard to get through. Except that volunteers from the church had just come to do landscaping that day and had cut most of the brush down.

AJ was not there. We started calling his name as JC went over the side of the brush and into the front. I checked all through the yard and then went inside. Maybe he had come in while I was distracted? I looked through the entire house, then went downstairs and into the garage. No sound, no sight of him.  I came back upstairs and out the sliding door. Nothing.  I called over to our church volunteers and asked if they had seen him, and they had not. Then I pleaded with them to help us look, as I saw my husband begin to run down the side street in front of the house.  They seemed a little baffled that we were so frantic, as they were certain he couldn't have gone far. I grabbed my phone and called 911 to report that my son was missing.

While on the phone, I searched the entire house again as the operator asked me to check under all the beds and closets.  The operator stayed on the phone with me until an officer pulled up in front. I shared the picture of my son with the officer and a description of what he was wearing. Now some neighbors walking on the street heard us and offered to help search for our son. I had been fairly calm, just certain he was around the corner until I realized that ten, maybe fifteen more minutes had now passed.  The officer radioed the description of our son and that he was non-communicative.  And just as a second officer pulled up, JC walked up the street, carrying our shoeless boy.

The officer was calm and happy for us, and told us we did the right thing. So many children with autism wander and many are drawn to water (and our son does love to play in water if he can find it), especially ponds, steams, and swimming pools. My husband had found AJ just down the street playing in the backyard of a stranger’s house. JC would not have seen him had AJ not just stepped off the back porch for a moment and gone back up the neighbor’s steps. AJ had a scrape on his knee, probably from falling while jumping over the side of the yard onto the concrete, and since he could not get back up the way he came, had probably just wandered down and across our busy main street by our home into another backyard. He was not worried, nor was he crying, nor was he afraid. It was just another yard.

It was almost six months later when I connected our story of losing AJ for an afternoon to another, familiar story. Imagine a mother and father traveling with their extended family and neighbors, doing something they have done every year around the holidays.  They know their son is a bit different, but he’s still a kid just like other kids.  They are on the return trip home and it hasn’t been that long—only a day’s journey, when they realize they can’t remember the last time they saw him. Didn’t we see him at lunch? Or was that breakfast? Wasn’t he with his cousin? Or was he with the other cousin? The parents begin to be worried, and start looking among all their families and friends and realize their son is not with them. They head back to the city and search for him. The news starts to spread among their friends in the city and people are out looking for their little boy, but no one can find him. Another day passes, then two, then three. Then finally, they go into the temple and there he is, sitting on the ground with the teachers, listening and asking questions. It was just another day. He wasn’t worried, nor was he crying, nor was he afraid. Instead, he asks his parents, “Why were you searching for me? Did you not know that I must be in my Father’s house?”

Sometimes we imagine that Joseph and Mary must have been angry and upset in this moment. I wonder if they were just so glad they found him. As you might understand, this story resonates with me and other parents of children with autism. While it is true all children have a natural curiosity and may wander a bit, children with autism often do not understand boundaries and safety. They do not understand that going someplace that is unknown may not be safe, because what they have known is safe. They may not look back for a parent or guardian to be close by. And they may not know that they need to ask for help, nor be able to communicate that need effectively to others.

April is Autism Awareness Month and today, April 2nd, is World Autism Day. The numbers are staggering: here in the United States, the CDC just raised the rate to 1 out of 68 children, and 1 out of 45 boys are diagnosed with autism. We do not know exactly why the rates are increasing nor why is it so prevalent in boys but there are girls also diagnosed with autism.

There is probably someone in your church who has a friend with autism, or a grandchild with autism, or they themselves may have autism. We as the church generally have not done a great job of including and welcoming those on the autism spectrum. We have turned around and shushed children who cannot sit still or be quiet, and many children on the autism spectrum have difficulty sitting still or make spontaneous noises. We have told parents that they cannot leave their children in the nursery because they are too old or too big, and we have told them they cannot attend Sunday school because they are still not toilet trained and are a distraction for the other children and teachers. We have not included people with autism, or with other disabilities in general, into the life of the church beyond a general welcome to worship, and even then we may not feel entirely welcome.

In our congregation, as people have come to know AJ, they also know that he likes to head out the back door. On occasion I have to run from the front of the church, but most of the time someone is keeping their eye on the stairs or the back door now. AJ likes to explore and wander, but now the church recognizes him as one of their own, and they do their part to help.

We see Jesus welcoming the children when the disciples wanted to send them away. We see Jesus embracing the ill and disabled when the disciples wanted to ignore them.  We see Jesus turning to those who cried out to him when the disciples wanted him to move along quickly.  

But when I look to Jesus, I also see our humanity reflected in him. I see someone who loves, who grieves, who prays, who wonders, and who wanders. I see Jesus as a child similar to my own. I see my son’s autism reflected in Jesus. For Autism Awareness month, let us all see Jesus reflected in the children around us, and let us learn to welcome them and to help keep them safe and loved.

 


Communicating God without Words—A Father’s Thanksgiving Reflection

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I spent my first four years of life running around Rosedale, Queens, New York City.  I have many memories of that house and neighborhood, before moving to the suburbs in Connecticut.  I remember the houses being very close together, and I knew where the ice cream truck parked for the night.  I remember one girl playing house and making me her “husband,” but I did not recall she had an identical twin.  I worry I may have unintentionally cheated on my pretend three-year-old “wife.” Most of all, though, I remember the airplanes. Rosedale is located at the end of a runway of JFK International Airport.  It was exciting.  The planes were quite impressive and flew close enough to rumble knick knacks off shelves.  


The God I knew in my childhood was much like these airplanes.  Powerful, impressive, and just beyond my reach, while making me shake in my boots.  Once I moved to Connecticut, I ran around the woods instead of the end of a runway, but I would always stop to see jets flying overhead. I struggled with my relationship with God, for I could only imagine the power and strength and not the vulnerability and love Jesus modeled. God, to me, would come and go with great power, just like those planes. I thought I had left that image of God behind, but it took my son for me to see the Divine in the small, the vulnerable, and see God every day. 


Today, my wife, son, and I live near SeaTac Airport in Seattle, where we see the airplanes often.  I am glad we are not at the end of a runway—we have many knick knacks—but we do get to see the airplanes landing almost every time we leave the neighborhood.  There are times when we take local roads right near the airport and a large airplane flies only yards above our vehicle.  Both my wife and I think it is amazing and I often remember that house in Rosedale. Our five-year-old, A.J., is unimpressed.  


Though A.J. must hear and see these large airplanes—at a friend’s home that is in the flight path he will cover his ears when the older louder ones pass overhead—my son stays in his own little world, which apparently has little interest in these loud, powerful, colorful, fast, airplanes.  He is much more interested in the texture of various plants, the repetitive sound of his own voice (called echolalia), jumping, trees, and the alphabet. A.J. lives with autism, and so my wife and I do as well.


I continue to point out the airplanes to my son, not knowing if he cares.  I wonder how he will remember these days, because he does not often use words to communicate.  He will probably remember specific trees, for it is clear that he looks at the tree in entirety, often even proclaiming aloud, “Tree,” to new ones. When I see an airplane impressively fly overhead and my son is not interested, I am reminded how different my job is as a parent of a child with an invisible disability, because I am able to recall being able to run with the older children at his age and be involved in their activities and trouble, but A.J. does not engage with other children.  I notice that he is generally happy, but I mourn most that I don’t have the boy to share airplanes, play ball, or joke with.  I have to adapt, but at times I simply want to cry that my son at five still does not call me “papa,” but I don’t for it would be selfish of me.  


Every parent can say “this is not what I signed up for.” Honestly, I know neurotypical children who I would have a very hard time watching, let alone living with.  There are some things about having a son with autism that are actually advantageous.  When we play with toys in the store, he always puts them back before we leave.  He never talks back, which I observe is the greatest difficulty with most kindergarten children, especially when it comes to negotiations. However, he is still not toilet trained and is above the weight limit of any changing tables. He does not understand the need to communicate.  He has been trained to ask for a few things he desires greatly, via a communication board, such as tickles, deep pressure, back rubs, and pizza. He knows many nouns and actually understands many of our directions and commands; but he currently has no desire or ability to communicate his needs, wants or thoughts.  This is frustrating. 


Before my son, I had two dogs that were very happy and received a lot of my love.  One was a Labrador Retriever-Rottweiler mix, named Manchester, who was very energetic, gentle, smart, and obedient. Not only did he know simple commands, he was smart enough to understand complex sentences.  He would perk up at certain words like out, food, couch, ball, walk, vet, car, and would figure out what was happening.  People were impressed with how much he could understand and how well he listened.  We would often go to parks together and even walk around the small New England towns we lived.  It was wonderful dog/person relationship.  Manchester had his routines. He communicated in his own way, by a nudge, a grunt, or by jumping when excited.  


My son communicates much like Manchester. Manchester nudged and whined when he wanted something to eat. So does, A.J.  I share my experiences with this canine and my son, because to the outsider, the relationship must seem quite similar. Those who do not have a child like A.J. need some way to understand how different life is in my house.  Comparing my son to other children, especially children without a disability, is unfair, but people do that constantly.  As a result, they either see my son as less than other children, or else excuse his peculiar behavior by say things like “all children do that.” A.J. does certainly some things like a typical five-year-old, such as wanting candy, but much of his behavior is closer to that of a typical 18-month-old, not a five-year-old. Most people do not want to see that A.J. has a disability, and they say things with good intentions, but it is clear they are avoiding the reality of his vulnerability, because they do not want to face their own.  


My wife and I have had some great progress using communication boards with A.J., we encourage him to sing songs, and we often hear things he enjoys because of his echolalia. So far, other children have loved A.J. and enjoy his energy.  Sometimes they ask why he doesn’t talk, but generally, they seem fine with it.  At times, I have observed some kids making fun of A.J. for still wearing a diaper.  Luckily, he doesn’t understand teasing yet, but it saddens me that other parents must have modeled such behavior, and my son will always be vulnerable to such teasing.


With A.J., I must constantly think about containment. A.J. will run or slink away if his interest is not held.  Shopping is a chore even without a child, but now that A.J. does not fit in the cart it is nearly impossible to go grocery shopping with him. At a large gathering one time, he snuck out from the children’s program and was found many yards away. Worse still is his lack of awareness around cars.  I must have a hand or be ready to grab him at any moment.  My wife and I have considered one of those backpacks with a leash, but it does not help teach him the awareness that can only be learned by holding a hand.  We model everything as best we can. We move together more on routine and simple clear words, “stop, come here, juice” and a few others.  Often I narrate what he is doing and keep saying things like, “Look an airplane.” I have been told this will eventually help him.  


While many of the therapies seem more like tricks and training, there is so much joy and exploration my son has.  Though he has trouble with communication, he still adds to the conversation.  He does not suffer, but he does need special assistance so we can know more about his gifts.  He also has developed humor, from tickling, to the scene of Snoopy wrestling with the chair on the Thanksgiving special. I look forward to more jokes and laughter in our home.


We do not work out of an economy of deficit, but one of gift.  That is, each person adds to the conversation with their unique gifts.  This doesn’t mean that disabilities aren't difficult; they are. But they are made even more difficult when neurotypical people see those living with disabilities as a drain on resources; as a deficit.  


A.J. does not have a disability in order to be a life lesson for me, or others, nor is he one of the “least of these.”  We all learn from our children.  What I’ve learned from my son who lives with autism, is how terrified others are of the vulnerability they observe in him.  Most people do not want to admit that A.J. is different. They try to avoid treating him in a patronizing way or they choose to see his difference as a life lesson.  They rather say, “It’s ok” or “He will be fine,” or they start a story with, “I know someone with autism…” People do not want to deal with their own vulnerability, so they avoid seeing A.J.’s disability.

 
I want to share A.J.’s exciting gifts of energy, humor, exploration, letters, counting, (in English and Choctaw), and cuteness, but also share the frustration and difficulty of having autism.  This is why I shared the odd thought I often have, that my son reminds me of my old dog. It is difficult for me as a father, and yes I believe we will progress pass this stage of communication, but we will never remove autism from our reality.  No pity needed, though it does require some special accommodations.  When we look at all people for their gifts and not their deficits, we see accommodations as important for all of us so we can include everyone.   We all benefit and we need to invite everyone to this vulnerability.


I have intellectually talked about a God that is present and interconnected with everyone; I know I have preached it many times.  However, since my son was born I truly had to learn it through my whole being, right down to my heart.  I do not know all of A.J.’s gifts yet, but he has encouraged me to see my own gifts, rather than my deficits.  In my heart I held the image of God as powerful and unattainable, and thus I saw God often only when I felt guilt or shame, when I saw myself as a deficit.  I now see God in the dirt and trees through A.J.’s obvious vulnerability.  No longer does God fly past and make me tremble, I am rooted among all of God’s children and creation, rooted and interconnected by the dirt and mud puddles that reflect my own gifts.


So when the airplanes fly overhead years from now, I am hopeful my son will be able to say, “Look an airplane.”  Even if he does not say it in words, I am sure he will recall the love of his mother and father and understand the Divine is closest in the rooted trees that are vulnerable to drought, wind, and humanity, interconnected through the dirt they all share, no matter their ability. 

 

 

J.C. & A.J. visiting Big Tree in 2012

J.C. & A.J. visiting Big Tree in 2012

Stretch Out

I get angry. I am human.  I am mature enough to note the anger and once the physical traits of anger pass I try to discern why.  That is, once my cheeks are no longer red, I try not to react in anger; I try not to hold onto it.  I try to assume we are all people on the same boat, or globe, and God is the only true “other.”  I actually find this much easier with things that you know would make one angry, such as the two times I have been punched in the face (great stories for a different article).

Small things do seem to drip into my bucket of potential anger.  Some of it is irrational and I am aware of that, but I am going to share a short list of things that get me angry.  I would include things like driving slow in the left lane, people who talk on mobile phones as a clerk serves them, and that extra-large socks are often placed on the bottom rung, (Hobbits are not real; tall people have the larger feet), but I want to share some of the rational and irrational things that pertain to being a dyslexic and raising a son with autism.  It is okay to laugh a little--I will, as I think of them:

  • Jokes about dyslexics said by non-dyslexics
  • After discovering my son has ASD, telling me about someone you know with ASD
  • Telling me “oh he is just 4, he will grow out of it” (yes, 4 year olds are not like 18 year olds, they are smarter).
  • When my son steals food, saying “it’s OK,” as we discipline him. (He understands a lot and this is not OK)
  • Putting text on top of an image on a website; I cannot read it.
  • Saying “oh I have trouble spelling, too.”  Guess what: dyslexia is not just about spelling.
  • Stating “We welcome all children,” and discover that it is only if they sit still and pay attention.
  • Saying “when my child moves out.” Yes, it is irrational, but for many people I know this is not a possibility. 

I can go on and on, but my point was to simply share where I am coming from, when I read Monday the resolution shared on Dmergent, “…to welcome all.”  Within the resolution there seems to be an inclusive list of people in the welcome, “…race, gender, age, sexual orientation, gender identity, nationality, ethnicity, marital status, or physical ability.” I am glad to welcome all people, and honestly it would be great if we could just say “people.”  I am glad to see it includes physical ability specifically, but I was very troubled that my son with a developmental disability or friends I know with mental disabilities were missing from the list.  I know it was not intentional to keep them off the welcome, for the response I have received has been quite positive.  It is systematic of how people with disabilities both visible and invisible are often dealt with in society.  It was simply another drip for me. 

While at the Emergence Christianity gathering this past weekend in Memphis, Phyllis Tickle said she believed that the last group of people to be included entirely in the church is the LGBTQI.  Now when a friend of mine asked the question on my mind about the disabled, Phyllis answered that there is no scripture against those with disabilities.  I was angry for a bit, but seeing the resolution on Monday reminded me to not react from the anger; but to speak up with love.

I believe Phyllis is both wrong and correct, and that is great.  Being wrong is something I do often, and it is a place to learn, so if I claim that Phyllis can be both, so can I.  When Phyllis was speaking about the very important conflict within the church over the inclusion and rights of LGBTQI people, she is saying it is the last fight over Sola scriptura.  That is, for people who are not including the LGBTQI people, their argument relies on a few verses in the Bible, and they attempt to read the Bible literally on all matters, thus upholding a patriarchal system of judgment and law.  So yes, if the resolution passes within the Christian Church (Disciples of Christ), it is not only an affirmation of an inclusive welcome but that the Bible is not “factional but actual” as Phyllis Tickle would state.

I do believe the disabled are another group that needs to be truly included in the church, and my ministry at Open Gathering keeps that front and center with the disabled, but at the same time, all the others named in the resolution.  Yes, Phyllis said the LGBTQI will be the last group and while I don’t agree with it being the last group, I believe I am humble enough to understand her point is once the acceptance and inclusion of LGBTQI is the norm, the way we read scripture will have been fully brought to a loving way that includes room for Academia and especially the Holy Spirit. Sola scriptura will not have the same power, and we will not replace it with another Pope, but with an organic loving non-hierarchal church.

To go back to the scripture that Phyllis said did not exist to bar disabled people from the church; I know there are specific scriptures in the Hebrew Bible that specifically say things against the disabled, but rarely have I run into Christians who uphold that against each other.  There is not currently a huge division in the church in including people over these scriptures like in the debate of including the LGBTQI.  However, many do take the healing stories and metaphors to an extreme within our own context, and thus create an ethos of the perfect body and mind as synonymous with right with God.  We uphold a platonic idea of separation of body and soul, thus making the experience of the physically disabled simply something to endure until heaven, and/or the developmentally and mentally disabled are disconnected from their soul.   This perspective leads to seeing the disabled as not equal and only in need of our help to be whole.  

So yes, Phyllis Tickle did not include the disabled as the next group because she sees the LGBTQI as a watershed moment, as I suspect the writers of the resolution do as well.  I agree there is something essential to the inclusion of LGBTQI people in the church, in part because as Phyllis points out, it is not just about hospitality, welcome, and love; it is about how we read scripture.

 I declare there are more groups to be included and all need to come to the discussion, understanding that God is truly the only “other,” and we can get upset and angry, but we can also listen to all people and perspectives without snide comments and without scandalizing people. 

So next time you call something, “lame” or God forbid use the “R word,” know it makes me angry, as if someone is using the term “lifestyle” or the “F word.”  The anger must not be returned, but we can share these feelings together.[1]  The more we learn about inclusion, the more we learn it is not a competition; it is the Body of Christ.  There are even more groups of people as well that we need to invite all to the conversation.  We know this, so let us model the love of the great and only other we call GOD.

[1] Mark 3:1-6 

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The Path is Wide!

I read a wonderfully interesting paper called “Religious Belief Systems of Persons with High Functioning Autism.” I believe the authors of this paper have scratched at the surface of a new field, as they state in their abstract, and I am open to more work in this field of cognitive science of religion.  People have often jumped to one negative conclusion that would fit in that field, with the statement “religion is the opium of the masses.”  This statement has me welcome the study of psychology of religion, for I am confident the researchers will not discover opium.  This is because I work in church and live as one who confesses faith.

The paper specifically interested me because my three-year-old son has been diagnosed with autism spectrum disorder, and we hope it will be high functioning.  “We” are his parents, and are two ordained ministers, thus we are invested in the faith.  I encourage everyone to read the paper and understand, especially those that are active in a faith and love a person with special needs, that these authors are not attacking nor are they praising people with high functioning autism (HFA).  This is simply a paper based on two studies by researchers truly interested in this growing field.  Within these writings there are certainly important information for psychologists and neurologists, but I want to explore and reflect on what this may say to theologians and the church.

Church is sadly not always different from the secular world. Church is somewhere people feel different just as they would feel different in the secular world.   That is to say, our hospitality at church is not as developed as we would hope.  If a child and family do not feel welcome at church, or if it is a struggle to worship and learn with special needs, it will affect the relationship with the Divine.  I would be interested in the second study that asks about history and if it was asked about how church was experienced.  Was Sunday School welcoming?  Were people tolerated when they were a toddler with HFA, or did they start later? How were their questions handled by pastor, teachers, and family?  These are examples of  important questions about how church was, and therefore, how God was experienced, introduced, and sustained for these children of God with HFA.  Therefore, these are the questions the body of Christ, the church, need to ask constantly, and not wait for a study.

Upon reflection, perhaps apologetics has a greater place in theological discussion.  I enjoy C. S. Lewis, and not just because he goes by his initials.  However, I am someone who does not worry about faith being logical and reasonable.  I find many contemporary apologetics forget the great mystery and thus I do not share their conclusions when sharing my faith.  They seem to want to describe the lighthouse, where I am comfortable seeing the guiding light.  Perhaps as a pastor I need to be encouraging to those who explain God’s existence without the word “mystery,” as well as what works for me.  We must be aware of the many paths to confession of faith.

The most important message to theologians and the church is that people who do have HFA have thinking styles that are different.  Part of the difference may incline more people with HFA to embrace no confession of faith.   This is an important insight for us who do want to share the peace that surpasses all understanding we know as Love, that we call “God.”  The night before I started writing this I was at an event for Christian Piatt’s new books, “Banned Questions about the Bible” and “Banned Questions about Jesus.”  I bought both books and had them signed; I had one signed to my wife, and was going to have the second made out to me.  I then realized that I bet my three-year-old who (not unlike me) will want to ask the questions contained in these books, for many are very blunt and reasonable questions.  I know that some of the essays will answer with the word “mystery.” This realization made me ask that the other book to be signed to A.J.  So even though I read the paper on the two studies, I already worked on an assumption that the paper concludes, that people with HFA are going to look at religion differently and with preference to reason and logic.

I am reminded that Paul had an issue with a certain group of preachers who taught there was only one way to believe in Jesus, the way they had experienced Jesus.  For Paul, Jesus was the fulfillment of the History of Israel; and Paul knows who Jesus is because of his understanding of the Jewish faith, and thus he writes:

“Not that I have already obtained this or have already reached the goal; but I press on to make it my own, because Christ Jesus has made me his own. Beloved, I do not consider that I have made it my own; but this one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on towards the goal for the prize of the heavenly call of God in Christ Jesus.” (Philippians 3:12-14)

Emphasizing the relationship with Jesus is essential; it is not essential how he got there and so we should not force others into the same mold.

So the real lesson of this study is that people are going to come to faith differently, and we should be aware of the various paths.  We have been aware that there are people who are much more comfortable with theology than others.  I just hope the church continues to be a welcoming place for all, from logic to mystery, and everything in between.