Night On The Town

So, I noted on Facebook tonight that I had an interesting experience at Toys R Us:

Zach and I went to Toys R Us to buy a video.  From the moment one walks in the door of our local Toys R Us, there are prominent signs inviting shoppers to make donations to support Autism Speaks.  As we waited in the check-out line, I noticed additional flyers taped to the cash registers and counters encouraging donations through the cashiers.  We were third in line, and Zach was doing the things Zach usually does while he waits: he bobbed and danced around, tried to get me to buy him M & M’s, and periodically dropped hints that we should be done waiting in line.  Zach has a unique way of enunciating single words with the aim of motivating the listener to immediate action.  He says the word clearly, with an intensity that starts in the middle of the word and then builds through the end of the word, communicating intensity – “ride” means “it is time to go ride in the car RIGHT NOW”; “car” means…well, it means the same thing.  So, here in the Toys R Us line, he kept saying “ride” and “bag,” as in “put my video in a bag so we can go RIDE in the CAR.  NOW.”  He wasn’t being particularly difficult about any of this, or invading anyone else’s personal space, but it was constant movement and/or sound, which is normal for Zach.

As we waited, I noticed that the cashier had a list of questions for the person in front of the line, which she asked with little enthusiasm: “Do you need a gift receipt?  Do you need to buy any batteries today?  Do you want to make a donation to support autism?  Do you want your receipt in the bag?”  When that customer was finished, the next customer got exactly the same list of questions.

Then it was our turn.  “Do you need a gift receipt?” No. “Do you need to buy any batteries today?” No. “Do you want your receipt in the bag?” No.  And I noticed, no invitation to make a donation to support autism.  No change in the enthusiasm or empathy level, but a change in the question routine.  And as we began to move for the exit with our video in hand, I could plainly hear the questions for the next customer: “Do you need a gift receipt?  Do you need to buy any batteries today?  Do you want to make a donation to support autism?  Do you want your receipt in the bag?”

So, what to make of this?  I joked about it on Facebook, and I do think it is a little bit funny.  Zach may have done a little bit to help raise money for autism in those 10 minutes.  If he had been more irritable (which happens sometimes) he might have hurt the cause, I don’t know.

But I’ve got another thought on this, too.  Maybe I, a dad with a son who plainly has autism, want to give to support autism research. Certainly it’s true that living with autism has had a financial cost (to speak only of the currency in mind in this transaction), but aren’t there breast cancer survivors who do the Komen walk for the cure, and raise and donate more money besides?  Don’t lots of people find ways to give generously to the causes that touch them most personally?  So why would the cashier pass up this opportunity to invite me to do the same?

I’m not sure (and I’m not offended or mad, either, to be clear).  Maybe the thought is that I  might already give in more intentional ways than a quick hit at the check-out.  Or maybe she felt awkward asking me to give while Zach was being so insistent about moving on.  I don’t know.  However, I do know that one of my favorite things is not standing out just because my sons have autism; being just part of the crowd is nice sometimes.  I know that many people with other special needs or disabilities express that they feel the same way.  They don’t want special rules or concessions.  If they need them, they’ll probably ask for them, and then they hope you’ll be ready to help.  And in that way, they’re/we’re pretty much just like everyone else.

Beyond Aware

It’s World Autism Awareness Day.  I have two sons with forms of Autism.  At least one of their doctors along the way thinks I “could have been diagnosed”, if they were diagnosing Asperger’s Syndrome in the 1970’s.

I don’t feel like I really have anything to say, though.

Do you ever think about a segment of time and come to the conclusion that the segment of time seemed to have gone by very quickly, and yet in another way, very slowly?  I feel that way sometimes about the 7 years that have gone by in which my family has had autism as part of our identity.  I feel like I still know very little about autism, and yet I know a great deal more than I did then.  What I did not know was how large the field of experience and understanding related to autism is: what I thought was a field (to use the same word a different way, which is endlessly amusing to some with autism, and endlessly irritating to others) is a prairie, far bigger than I ever imagined, and more diverse.

I know a lot about my kids.  I understand Zach better than I used to, and am able to enter into life on his terms much more easily than when we started.  I’ve always understood Josh much better – he and I are very much alike (and perhaps are on the same end of the spectrum, if we are there at all), and his reactions are often self-evident to me.  However, this also means, increasingly as he gets older, that I am more frustrated with him when I see him doing less than he is capable of – especially if it is a way of failing that I, too, struggle with.  I know this is common for parents of neuro-typical kids, and this is something we share.

What do I know about Autism, though?  That’s less clear.  I know Autism is real.  I know Autism looks different in every person, but that after a while, you can recognize it pretty quickly.  I know that Autism tends to dominate whatever relational space it inhabits, and it takes a lot of work for that not to be the case.   I know that Autism requires the people who interact with it to be flexible.  I know that people with Autism can be as smart, as funny, as kind, as athletic, as loving, as fragile, as human as anyone else.

And I know that Autism is not going away.  So, while a day like World Autism Awareness Day is a quaint idea, if you live in America and aren’t aware of Autism by now, you’re probably every lawyer’s dream juror.  It’s time to go past being aware of Autism, and on to figuring out how to integrate the people and families with Autism who are part of your social networks.  They need it, and its likely that your life is going to be richer, if not neater and easier, for it.

Hope Touches Us

I think the most difficult aspect of living with a chronic condition is maintaining hope.  As a pastor, I have been a fellow traveler with many people through illnesses and conditions that had no prospect for improvement, and watched them confront that reality.  As a father of two sons on the autism spectrum I have been on a journey of discovering from the inside what it is to live with a situation that changes, but does not resolve.  If hope is desiring something with an expectation of attainment or arrival, chronic illnesses or conditions that we will carry to the end of our days would seem to crush hope.  For hope to have any weight against such a force, it must have a quality or substance which is beyond what we measure in the world of time and matter.  This idea forms a kind of lens through which I have seen much of what I observe or experience for many years now.  It is through that lens that I found the new television show “Touch” to be so disappointing.

I have been trying to write about this for more than a week, since Fox premiered “Touch”, featuring Kiefer Sutherland.  When the show was first promoted, it was about a kid with autism and his dad, but by the time the show got to air, there was a clear attempt to back away from that idea (in the pilot, there is a scene where a social worker refers to the boy having autism, and the father responds that there are several labels that have been applied to Jake, but none of them quite fit).  Instead, the premise is that the boy has a special gift which enables him to understand and interact with numbers in a way that few can.  This gift allows him to see connections between people that are invisible to the rest of us, according to the show’s “guru” (played by Danny Glover), who seems to be an apostle of new-agey pseudo-science.

I was prepared to hate this show.  In fact, the first promo I saw on television seemed so trite and simplistic I began to cry with anger.  I told my wife I was sure I was going to hate this show, and that I was going to use this and other venues to make that plain.  As the show drew closer, I read whatever I could find about it.  Then, I watched the show, and realized it wasn’t what I expected it to be.

Which is not to say that I was pleasantly surprised.  I was actually even more disappointed than I expected to be.  A week’s worth of reflection on it has helped me to see that hope is at the center of much of my disappointment and dissatisfaction.

The show’s back and forth behavior about the boy’s condition is the first problem.  The previews of the show prepared me to expect the boy to be more of a plot device than an actual character – an update of the “magical negro” – and the indecision about if he has autism or not continues to feed that suspicion.  I read one interview (which I can no longer find) from show creator Tim Kring in which he said that the boy’s autism-like affect was a plot device to help make the story “timely” or “relevant”.  However, this interview with Sutherland suggests not only that the autism diagnosis hasn’t been dropped, but there will be a special effort to show autism in an authentic way.    Considering that his “autism” enabled him to see the future in the pilot episode, that’s going to be an uphill battle.  It is easy to imagine the contours of the boy’s “condition” conveniently matching the needs of future episodes again and again.  People (not people with autism, all people) deserve more respect and dignity than to be reduced to plot-moving devices by lazy writers.

Since it has been revealed that Kring has a son on the autism spectrum, I hoped he would understand that. Unfortunately, this is a man with a sketchy history when it comes to creating well-developed and consistent television characters.  As was the case with his last show “Heroes”, the early returns suggest that the story he wants to tell is the big thing, and the characters will fit into that story, coherently or not.

The story Kring wants to tell is the second, and larger, source of my vexation.  His story – his hope – is grounded in the notion that everything is connected in ways we cannot see and rarely discern.  The point of “Touch” seems to be to tweak reality (hence the boy’s pseudo-autism) to emphasize this notion of interconnectedness and purpose in a world that seems to be cruel, random and without meaning.  By telling a story with harrowing and heartbreaking notes which ultimately resolve into a coherent and hopeful chord revealing cosmic purpose, Kring is trying to give hope to the hopeless.  In fact, Sutherland referenced that hopeful thread in one of his interviews when he said “wouldn’t it be great if the world worked like that?”  The fact that it doesn’t – unless kids with autism actually are super-evolved inter-connectors – means that this is a hope that can’t last past the end of each episode.  It’s a fairy tale.

My family’s life is no fairy tale.  It is also not hopeless.  My sons are magnificent, and each of them is advanced in their own ways, and each of them finds it almost impossible to do things that virtually everyone else takes for granted.  Sometimes our life together is beautiful and laughter-filled and awe-inspiring.  Sometimes our life is ridiculously complicated, and after years of it still causes me to cry with frustration.  But through it all, I have hope, and it is grounded in this: Jesus is Lord.  Every time I try to tell you why that’s enough hope, my sentences fall apart, but it is true.  And when this life is over, Jesus will still be Lord.  And whatever we become, in this life and beyond, Jesus will still be Lord.  Our troubles may be chronic, but they are not eternal.  Thanks be to God.

Savoring

My dear wife is now in love with Pinterest.  I am still trying to spell it without having to look it up.  But, there was a neat idea there that she ran across this week: take a jar, and every time something happens that seems memorable, write it down and put it in the jar.  Then, at the end of the year, pour out the jar and savor all the stories on those scraps of paper.  I love this idea because I suspect that many of the things that we think at the time will be memorable will, in fact, normally get lost over time.  Writing them like that will preserve them, and they will bring fresh joy when you take time to reclaim them at the end of the year.

Like this story from yesterday: Zach loves Baby Einstein things – he loves the music, he loves playing with the hand puppets, he loves to carry around as many board books as he can so he can sit and read them when he wants.  But sometimes, he gets his facts a little messed up. Last night we were all riding in the car, and suddenly, in his sing-songy voice, Zach says “Baby Einstein: Who loves in the pond”.  We vaguely recognized this from one of the videos, but were also fairly sure that they actually say “who lives in the pond.”  So, I said, “Hey Zach, it’s who lives in the pond.”  “Baby Einstein: Who loves in the pond,” came back the reply, which caused Josh to break out into giggles.  Josh then tried the correction next, but Zach was still insistent that it is “who loves in the pond.”  These attempts to get Zach to change his tune went on and on, and each time, Zach responded with a steady, peaceful “Baby Einstein: Who loves in the pond.”  Eventually we quit trying, mainly because everyone was laughing too hard to talk.

Zach: 1, Everyone else: 0.