Avdat

Mother's Day tributes

• The story of this autistic child's mother is one we can identity with.
• A stay-at-home Mommy's economic value:  $117K!

The politics and spirituality of autism

The post downstream regarding the politics of Autism does beg the question:  If not give credence to junk science, what more should politicians do about Autism?

My impression is that EC departments in school systems are woefully underfunded.  By law, a school system official cannot plead lack of funds as a reason to deny services, but the way they get around this is to insist that a child fail before they'll come up with money for special services.  They will also give in more easily to savvy parents than to parents who don't know how to advocate for their child.  I would like to see school systems flush with enough cash to pro-actively dispense services rather than having to hold on to what precious little money they have until pushy parents or a classroom disaster pries it out of their hands.

So the short answer is "More money for EC education."

The other thing that gets in the way is parents.  I've run across a lot of parents who simply didn't want to believe that their child was disabled.  This is strange to me.  We were relieved when our older son received a diagnosis of autism, because to that point, we just thought that we must be really bad parents.

There's plenty of reasons for this state of denial, but most of them go back to prejudice against the mentally disabled.  We have a hard time seeing the Image of God in a Down's Syndrome child, or an Autistic child, or in children with other mental handicaps.  If for you, the Imago Dei equals "Cogito ergo sum," and your kid is autistic, then that means owning up to having a subhuman offspring. 

Things like the ADA are the government's contribution to the dignity of the handicapped, but the churches have a real responsibility here to teach us how to see the Image of God in persons who don't think like us or don't think much at all.  In this respect Autism and Alzheimer's Disease are similar.  Both combine mental impairment with physical aggression in a way that takes a big toll on loved ones.  We need spiritual strength as much as access to services in order to accept the diagnosis and care well for the person afterward.

(This, by the way, is why the vaccine theory is so pernicious.  It assumes that Autism is a disease that we can one day prevent and/or cure.  But curing Autism would mean the end of my son as I know him.  His Autism creates big problems for him and for us, and he's old enough now to start to recognize that, but it's also a core feature of his personality, one that, as his father, I happen to be in love with and wouldn't want to change.)

So, to conclude, I'd like to hear a politician, in response to a query about Autism, say, "You and your loved ones are in my thoughts and prayers.  And I hope to put my prayers into action by providing your child with the resources he or she needs in order to thrive in this world to the best of his or her abilities."

I feel the love

Autism gets its 15 minutes of fame in the Presidential election cycle.  Yglesias is disappointed that Obama joins McCain in drinking the anti-vaccine Kool-Aid.  Hillary has too.

I agree with Yglesias that, "Making parents afraid to get their kids immunized does real harm to our public health."  As I've said before, autism is tough, but unlike a multitude of communicable diseases that vaccines prevent, it is neither catching nor fatal.  Any reasonable weighing of risks vs. rewards will always come down on the side of immunization.

And I totally agree with the comment Sven makes on why Obama might jump on this rickedy bandwagon:

Imagine how this issue would look in a GE debate. To argue against this link Obama would have to discuss research and the costs vs. benefits of public policy. McCain will just argue that he wants to protect little kids (ignoring the fact that vaccines protect children too...).

Imagine how the MSM would cover the issue; crying parents insisting they observed such a link vs. 'experts' disputing such a link. Picture how that would fit with the smarty-pants 'elitist' caricature of Obama and the real-guy depiction of McCain.

I think this is just one of those issues where those of us who don't believe in such a link may have to accept that politics just sucks sometimes...

Against hysteria

Oh dear:

Sabrina Rahim doesn't practice any particular faith, but she has signed a letter declaring that because of her deeply held religious beliefs, her 4-year-old son should be exempt from the vaccinations required to enter preschool.  She is among a small but growing number of parents around the country who are claiming religious exemptions to avoid vaccinating their children when the real reason may be skepticism of the shots or concern they can cause other illnesses.  "It's misleading," Rahim admitted, but she said she fears that earlier vaccinations may be to blame for her son's autism.

I mean, when you can't tell the difference between an atheist and a Christian Scientist, well... there's something deliciously ironic right on the tip of my tongue, but I can't seem to get it out.  Will leave it up to Hitchens.  He is a gifted writer, even if he is a bigot and a warmonger.

Meanwhile, we seem to be in full-blown MRSA meltdown.  Yes, it appears as though staph infections kill more people than was previously thought.  Still, this recent front page story on one of those moms who was just shocked (!) that her child had to go to school with a child with MRSA is telling.  Titled "Parent says schools aren't doing enough to prevent spread of MRSA infection," it could have just as easily been titled "Mom freaks out" because the facts reported in the article, namely, that MRSA can be easily dealt with by hand-washing, covering the boil, and a regimen of strong antibiotics, belied the mother's concerns.

TMI is a great acronym for everything from that drunk chick at the bar telling you in no uncertain terms what her ex-boyfriend used to do for her, to that office mate who thinks you need to know every single excruciating detail about his colonoscopy, but it could just as easily be applied to the information overload that's typical of modern life.  There's always "breaking news" on CNN, even if they have to go live to a car chase in Oklahoma City, and you live in Pittsburgh.  There's always somebody texting you OMG!!!  It's hard to weigh genuine threats from peripheral ones.

Or is it?  The exotic, the new, the poorly understood, and the rare seem to take on an exaggerated importance for those prone to anxiety.  Never mind that no one's died from autism, but untold numbers of people have died from communicable diseases.  Never mind that one child died from a staph infection in some school somewhere, but thousands die from accidents.  The utterly implausible specter of your child being unwittingly subjected to some kind of Nazi medical experiment by BIGPHARMA and its legions of lab-coated misanthropes rubbing their hands together and chuckling malignantly is far more compelling than your child dying the way lots of children die each year in this world:  some airborne illness that brings fever, brain swelling, and death.  Why, my child is way too special for that!

Yes, for Little Miss Precious, only paranoia on the scale of Oliver Stone's JFK will do.

On Parenting

I caught the tail-end of Morley Safer's interview with Helen Mirren on 60 Minutes Sunday night.  Safer asked Mirren, an extremely wealthy, talented and beautiful actress, if she regretted not having children.  Mirren replied, Absolutely not.  If I'd had children I wouldn't have had the freedom to become the person I am today.  Or words to that effect.

Such statements leave me feeling a variety of unpleasant, conflicted emotions.  I will confess to entertaining certain dark thoughts in the course of this parenting adventure, especially when things are not going well with our disabled son.  Thoughts that begin with, "It would have been easier if we'd...," or "If we'd known then what we know now..."  I found myself resenting Mirren's certain rejection of parenthood for the way it sort of confirmed the dark thoughts in my head.  I prefer shushing those voices.

Then I wondered, What if we all exercised Mirren's option?  What if the entire human race rejected childrearing for the freedom to pursue a fully self-actualized life?  The 21st century could be our finest and last hour.  And maybe the 22nd century would be the beginning of a golden age for all the other animals, vegetables and minerals.  What better way to reduce greenhouse gas emissions to zero than by reducing the human race to zero?  What a gift, to ourselves and to the rest of the planet, to not reproduce ourselves!

(I'm being a bit facetious.)

And I take it that this is the plot of a novel I haven't yet read, P.D. James' dystopian The Children of Men.  Although, as I understand it, in the novel, the disappearance of children is not a human choice but some sort of calamity visited upon us.  I should probably read it sometime.

Mirren's reasons seem selfish to me.  But am I just envious, given that there's a lot of things I'd like to do that being a parent won't allow me to, and being the parent of an autistic child really prohibits?  And, in fairness to Mirren, she was speaking for herself, and not being prescriptive.

Are there good and bad reasons to have children, or to not have them?  If I'm remembering correctly, in Karl Barth's discussion of birth control in CD III.4 he argued that we're no longer under an obligation "to be fruitful and multiply" since the one child that really needed to be born has been born, and not as a result of procreative sex!  Stanley Hauerwas, in his customarily acerbic way, has noted that a lot of the reasons why people have children are inane.  Because you're lonely?  Get a dog!  That'll cure the loneliness and with a lot less grief!

So the short answer is No.  We're not under any compulsion to procreate.  And some of us do so thoughtlessly.

And we all know of highly successful people, in the arts, sciences, politics and humanities, who lead disastrous personal lives--at least according to their biographers.  I guess if you're hell-bent on being a great actor, or writing the next breakthrough book in such-and-such discipline, it's better to be like Mirren and not have children than have them and neglect them, or punish them for getting in the way of your career.

But that's exactly what I resent, the attitude that having children gets in the way of being the kind of person you're destined to be.  And the notion's not owned by the rich and famous and secular.  Wasn't it the Apostle Paul who argued that marriage, and mutatis mutandis, childrearing, was a distraction from "unhindered devotion to the Lord?"

I remember dwelling on 1 Corinthians 7 quite a bit as I tried to make up my mind whether to marry my wife.  I thought that marriage and children and a middle class lifestyle as a parish pastor might be the easy way out.

Well, God gave me an autistic child.  It turned out to be a less than easy choice, pension plan and health insurance notwithstanding.

Can't the drudgery, the tears, the frustrations and limitations of parenting be God's gift to us?  I haven't gotten around to writing that book I thought I'd have written by this point in my life, due mainly to the fact that, between shepherding a congregation and dealing with a child who's likely to lock up on you and lash out at you, there's little time or energy for such enterprises, but without him, it'd have been an insufferable book.  I've learned over the past ten years how hard it is for sinful human beings to accept God's grace to love the enemy.  I'd have been a much more insufferable pacifist without the daily testing of responding lovingly, prudently and nonviolently to a child who can, at times, be quite violent.  I have a far greater appreciation for the U.S. soldier, sailor or Marine who lives in a far more dangerous environment, dealing with people who don't have autism to blame for their aggression, and still do their work within the confines of the Geneva Conventions and the codes of conduct of the U.S. military.  I am grateful for little things I'd never been grateful for had I passed on children, or had both my children been "normal."  None of this makes for worldly success, but isn't it worth something?

Now again, let me say that just as there's plenty of bad reasons to procreate, there are more than a few good ones not to.  One would be not coming across someone whom you'd trust to be the other parent of your child, and who's willing to do it with you.

Jesus was childless, but unlike his disciples (which may well have included Paul, had he been on the scene in Mark 10) he didn't seem to regard them as getting in the way of his mission.  They were his mission.  How can icons of the kingdom, runny noses and all, whether they're the fruit of our loins or not, be stumbling blocks on our path to being who God created us to be?

United Methodists Don Tin Foil Hats

A United Methodist colleague asked me what I thought about a resolution he had to vote on at last week's Annual Conference.  Said resolution calls on the powers-that-be to eliminate thimerosal (a mercury-based preservative) from vaccines.  Click here and scroll down to read the resolution.  It doesn't mention autism, but a link between thimerosal and autism was apparently asserted in the debate over the resolution.  Parents of autistic children crying and so forth.

What do I think about this?  I don't think thimerosal causes autism any more than I think Apollo's chariot causes the sun to rise.  Neither does the scientific community.  And I've written elsewhere about what I think the motivations are behind some people's stubborn clinging to their tinfoil hats bedecked in autism ribbons. 

And the resolution asks the impossible:  no use of thimerosal without a guarantee of no adverse effects.  If that's the standard, then the very practice of medicine becomes impossible.  There are risks, however small, in every medical procedure.  Heck, the video I watched before I had my wisdom teeth pulled warned that anesthesia does result in death occasionally.  Death?  At the dentist's office?  Dude, what have I gotten myself into?

But there's a more important point:  Are the kinds of people at a United Methodist Annual Conference (or a Presbytery meeting, for that matter) competent to speak for God regarding such an issue?

You don't have to (wrongly) think that "the Church should stick to spiritual matters" to answer No.  You don't have to be in bed with that post-modern bete noir, the fact/value dichotomy, to say No.  I think that plain common sense would lead one to say that it's simply beyond the Church's sphere of competence to render judgments on these kinds of medical issues.  The Western North Carolina Conference may as well weigh in on the usefulness of mammograms in women under 50, or Celebrex, or drug-eluding stents.  But why would anyone in their right mind ask his/her minister about the pros and cons of these treatment options?

It's actually easier for the Church to speak authoritatively to the big issues, rather than the small ones.  I think it's easier for the Church to speak about abortion than partial birth abortion, the merits of going to war against Iraq rather than the merits of "the surge."  Sure, the devil's in the details, but that's precisely why the Church ought to speak to the big picture.

And let me say that I'm not picking on the United Methodists.  For six months now, we Presbyterians have been batting around the idea of apologizing for the gunning down of six people by Klansmen and neo-Nazis in Greensboro in 1979.  We keep tabling the resolution.  Good for me because I'm really not qualified to determine whether or not a Presbytery that didn't exist in 1979 might somehow be complicit in a notorious hate crime.

I am competent enough to know that far right hate groups remain a problem.  Instead of issuing a meaningless and perhaps unnecessary apology, why not just put The Southern Poverty Law Center in our presbytery's annual budget? 

And if United Methodists want to make a difference with autism, then their congregations can provide for a trained person to help integrate people with autism into their worship, Sunday School, fellowship events, and other gatherings.

Talk is cheap.  So are tin foil hats.

Theology of Autism

Here's a good story about a congregation making disciples by welcoming a child with a severe disability.  One paragraph's particularly insightful:

The horror of autism is that those who suffer from it long for and need human relationships, but are frightened and unbearably overwhelmed by them at the same time. It occurs to me that my own approach to a relationship with Jesus is a bit like this — a deep need for him coupled with fear and awe.

The longer I live with my son the more I learn how autism is an apt metaphor for a lot of our potential and limitations as disciples.  The autistic child's lack of empathy can render something as taken for granted as the Golden Rule utterly mystifying.  But that also forces the rest of us to ask questions about our own failure to treat others as we would have others treat us. 

The God-human relationship must be a lot like the relationship between a parent and a disabled child.  I wonder if "Original sin" can't be thought of as something of a disability in our moral capacity which, while not excusing our bad behavior, provides a reason for it.  And this condition makes it complicated for God, who, as the prophetic literature shows, veers from anger to pity, both emotions, of course, governed by love.  God can't just write us off, even if he'd like to, not only because we're his children, but because we're damaged. 

And I suppose this experience of raising a disabled child makes me more sympathetic toward theologies of the atonement that are less forensic and more therapeutic.  Not that one has to choose between Irenaeus and Anselm, or between East and West.  Each is faithful to scripture.  Each accents specific themes in scripture.  And each needs the other.

That said, I probably start and return to the idea that we're not so much lawbreakers who need pardon, but damaged goods that need healing and remedial education.  Either way, God provides.  God is both the Great Physician, and the Judge who undergoes judgment for our sake.

Diagnosis?

I've been waiting for somebody to say this, and now they've said it.  Being the parent of an autistic child doesn't qualify one to diagnose autism in other people, especially strangers.  But as details have dribbled out over the week about Cho Seung-hui's poor eye contact, withdrawn personality and speech problems, it was hard for me not to jump to conclusions.

If Rain Man was the old poster child for autism, Cho might become the new one--if, in fact, this diagnosis holds up.  This could, of course, be a very bad thing for people with autism.  It could also be a very good thing. 

I think it will encourage parents who are ashamed of their child's disability to go public with the diagnosis.  That, in turn, would at least give the child's peers a frame of reference for thinking about the his odd behavior, something other than "He's weird."  If that results in less taunting, then so much the better.

No Thirteen Gun Salute for Me Today

When you're a pastor you become involved in the lives of, shall we say, eccentric people.  There was once this member of our congregation who lived in a nursing home.  The first time I met her was during the noonday meal.  There was green goo on her plate, as well as some yellow goo and some brown goo.  She solemnly pointed at the brown goo and announced to me that she would not eat it because it was likely meat.  "You don't eat your friends!" she declared.  "And you shouldn't have to eat goo instead of food," I thought, but kept that thought to myself.

She owned a dog named Sugarfoot, lame in one leg.  When she had to be admitted to a nursing home, the dog came with her.  Sugarfoot became the pet of the whole facility.  They had a nice courtyard where she took up residence.

But there was another dog who belonged to this woman, a dog I never happened to meet.  A man in our congregation told me that she had the dog put to sleep because it kept jumping up on people all the time.  He visited this lady once with my predecessor, and they wryly said to one another, "Do you think Sugarfoot knows what happened to the other dog?"

So that's eccentricity:  A vegetarian widow who puts down her own pet for less than exemplary behavior.  But this is not eccentricity: to spend most of your life helping people have children, and then kick your own child to the curb when she becomes more than you bargained for.

I'm on thin ice here.  We are parents of a disabled child.  Thus we are subject to all sorts of advice.  Not all of it is solicited, and not all of it is welcomed, especially the advice that is couched in a judgmental tone.  I'm about to make some judgments here.  Am I risking hypocrisy?  So be it. 

(A digression:  the worst advice is not from people who "just don't understand," but from people who understand all too well.  There's a subculture of parents of disabled children whose hours spent Googling "autism" coorelate nicely with their willingness to write in epic length to people they do not know, diagnosing children they've never met, and basing their diagnoses on qualifications that have nothing to do with, say, attending medical school.  These people are tiresome in the extreme.)

I tried to keep an open mind about this woman who adopted a child from the former Soviet Union, even though I knew where the story was going.  But alarm bells went off when I read that she renamed the girl, a two-year-old, after a beloved relative.  Children who are two know their names.  It's not fair to re-name them.  To do so hints at a less than healthy sense of ownership about the child.

So when the child turned out to be a lemon, she got rid of it.  Or to use the analogy above, she treated her like a pet that won't quit wetting on the carpet.

God knows it's difficult.  Heck, I know it's difficult.  We are raising a child who has been "defiant and aggressive, ignoring (his) mother, hitting his brother..." spitting on playmates, and exhibiting repetitive behavior, although things are better now than they have been. 

And I even know about wanting to be free of this burden.  As I once wrote at The Ivy Bush, I enjoyed the Aubrey-Maturin series so much because it was a way I could sail away psychologically from the pressures of domestic life with an aggressive autistic child.

But there's fantasy and reality.  You may want out, but you don't get out.  You keep faith with your child.  You put one foot in front of the other.  It helps, in this respect, to be on this side of the resurrection, where, to paraphrase Fred Craddock, we can see that the tomb was in fact a tunnel and not a cave.

We couldn't have done it without each other, Laura and I, or without God, or without the help of a fine psychiatrist and a cooperative school system.  So I wonder about this "partner" who shall not be named who was too busy traveling to help the mother raise a disabled child.  If this woman has indeed told her story in order to warn others, I think that the takeaway lesson is that family comes before career, especially when there are disabled children in the mix.

Laura says that the child is better off with a family who wants her.  Perhaps, but this child has been abandoned twice now.  That cannot be good.  She may heal from both wounds, but there will always be scars.  Every child deserves better than this.

And I wonder about the "normal" child.  What kind of message does it send to him that they've given the boot to the other child who was just too much to handle?  You can bet that, at some level, the child understands that if he ever gets too out of line, Mom may break faith with him also.  What a gloomy cloud to settle over a parent-child relationship.  "Nothing can separate us from the love of God," but he knows that there are any number of things that might separate him, for the second time, from his parent.  What pressure to perform, and what anxiety!  And in the parent-child relationship.  He deserves better too.

Three Cheers for the Emergent Church!

We got off topic at Lectionary Group today.  Rather than discuss Sunday's texts, Jonathan and I discussed the Emergent Church and this Christian Century article about it.

Explainer:  Emergent Church is a style of worship, mission and congregational life that's sprouting among Mainliners dissatisfied with their denomination's arid spirituality, and among Evangelicals dissatisfied with the theological shallowness of their tradition. 

Emergent churches reject the rejection of overtly Christian symbols characteristic of the Willow Creek model.  They eschew the emphasis on numbers that's a staple of the Church Growth Movement.  They ransack other denominational liturgies, mine neglected veins of church history, and utilize technology to create worship services that would be barely recognizable as such to mainline Protestants.

Jonathan appreciates the Emergent Church's "backwards" approach to evangelism.  Whereas Evangelicals have tended to say, Believe, Change Your Life and Join a Church, Emergents start where Evangelicals end:  Worship with us.  Pray.  Sing.  Now do a Meals on Wheels route with us.  And then ask yourself, "Is this way of life intellectually credible?"

The Evangelical style of Evangelism (think Billy Graham and Campus Crusade's four spiritual laws) made the church an afterthought.  In fact, I would go so far as to say that no one has done greater damage to organized religion in the last century than Billy Graham.  We all know more people than we can count who are "believers" but not "joiners."  It's not likely this strange phenomenon would exist were it not for the Billy Graham crusade's emphasis on the altar call, and the admonition to go join a church tacked on as an afterthought right as the new believer heads for the stadium gates.

So kudos for Emergent's ecclesiastically-based evangelism.  Despite its studied disinterest in numbers, Emergent Church may be an important factor in arresting the long-term institutional decline of mainline Christianity.

I appreciate the Emergent emphasis on participatory, multi-sensory worship.  Candles, incense, anointing with oil, frequent celebration of the Lord's Supper, congregations friendly to the arts--Emergent Worship involves all five senses, not just that of hearing. 

I love a good sermon and excellent music as much as anyone.  However, raising an autistic child has taught me about the limits of aural processing in terms of learning and growth.  Helping our son survive the avalanche of words that is emblematic of Protestant worship requires all the creativity, prayers and good luck my wife can muster. Worship that emphasizes the visual and the kinesthetic would be more agreeable to him.  He'd make a better Pentecostal than a Presbyterian.  He wouldn't have to sit still for so long.

Children--period--have taught me a thing or two about how worship engages, or doesn't engage, the faithful.  When I'm preaching, the kids are coloring, or fast asleep.  Even adults are gazing out the window--a bad, bad sign considering that our sanctuary has translucent windows!  But when I'm breaking the bread and holding up the cup, all eyes are glued, not on me, but on what I'm holding.

Now our autistic son would also not do well in the kind of sensory overload environment that characterizes some Emergent congregations.  But the Emergent accent on the visual and the participatory strikes me as just right.

Now that I've gushed, in the next post I'll try to think about some of the problems associated with the Emergent Church.  Not fatal flaws, mind you, but questions from a friendly observer.