A Smile as Big as the Moon...and a few other things

Tonight ABC debuts its movie A Smile as Big as the Moon.  At least one of the actors in it has Down syndrome, Peter ten Brink.  Maybe some of the others portraying students in a special ed class do also, but I'm not sure.

I haven't seen it, but I'm hopeful, partly for part of the dialogue quoted by a friend of mine:

“I’ve worked with special needs kids for far too long to romanticize their accomplishments. There are no simple solutions for any of them. These are basically good kids who’ve been dealt a bad hand. They live their lives on the margins. Their classroom is a metaphor for their existence. It’s out of the way at the far end of the basement. It’s like a cell block with bad air, bad light, no windows to the outside world. And outside the classroom, not much is asked of them nor is much expected. Can they try your patience? Yes, they can. And do they sometimes break your heart? Yes sir, they certainly do. But there are times – remarkable moments…when more is asked of them and more is expected of them. And they rise to the occasion, gratefully, gladly, just to remind you of the remarkable power of the human spirit."

The Regent School's fifth-graders came out to volunteer (for the third time this year) on Friday.  As I gave them my talk about the Ranch I told them, "Regent School started the same time Down Home Ranch started, and for the same reasons. 

Your parents and Jerry and I and our Ranchers' parents. we all want the same thing for our kids--not a good place, not even an excellent place, but an AMAZING place that makes sure you get a chance to live the best, most important, and most fulfilling life you can live."

I'm heartened by the dialog quoted above that this won't be another sappy feel-good movie that romanticizes Down syndrome and others with disabilities.  Our kids are members of the human race, with all the attendant joys, anxieties, fulfillments, and periods of desperation.  Like us, they are sometimes pleasant, and sometimes less so.  One minute we are ready to fall down in adoration of them and in the next to throw up our hands in utter exasperation.

Most of us parents, though, wind up sharing the sentiments of the Garth Brooks' song The Dance...

"Our lives are better left to chance; I could have missed the pain,
                but I'd have had to miss the dance."

Home at last

So, as the Canadiens say.  (Jerry noticed that they say "so" before every utterance and he made them all self-concious by pointing this out.  On the other hand, Jerry about caused our hosts to wreck the car we were all riding in with a colorful Texas saying which shall go unrepeated here...)

Our "Thinking Like a Movement" conference retreat came to an end at noon on Thursday, and it was truly hard to walk away from people with whom we'd worked, shared, and eaten way too much food over the previous five days.

This conference was an amazing, eye-popping, mind-bending experience.  There are other people like Jerry in the world!  Who knew?!

People who look around and say, "Nope, not good enough for my kid, or for the people I serve.  We'd better think it out again."

We should have known what we were in for when Jerry, a few days before we were to leave for the conference, casually asked Kristin to print out the reading materials which had been sent to us in preparation.

Dear Kristin, so obedient, so eager to please.  She didn't stop til they were all printed and neatly stacked in a 9" high pile.  "Uh," we said to each other the night before, "you take two and I'll take two and we'll read them on the plane."  Which we did.

In a nutshell...oh forget it.  There is no nutshell version of this conference.  Suffice it to say that it focused on the need to find solutions to complex social problems while exhibiting profound respect for all parties involved, listening very hard to what they say, and recognizing that

Finding a New Way

It's a cold but beautiful view outside our rooms at the Painted Boats Resort

It is soooo cold. Not surprising since we are in British Columbia, at the PLAN Institute's: "Thinking Like a Movement" conference.

We became aware of and interested in PLAN's work many years ago.  One of the founders, Al Etmanski, has a daughter with Down syndrome a little older than Kelly.  The Institute published a A Good Life, on life planning for people with intellectual and developmental disabilities, which still represents the gold standard on the subject.

This conference, however, is not about the nuts and bolts of things.  It's a crash course in learning how to think about ways to approach making sure our children, friends, and neighbors with disabilities enjoy the same rights as the rest of us to a good life.  The government route is less and less viable, as well as less and less desirable.

One of the sad aspects of the traditional ways societies have gone about doing this is that we ensure victimhood and poverty for those we wish to help.  We need to come up with new ways to support people with disabilities in dignity and with real opportunity.  Canada has gone light years beyond the United States policy-wise in this area. 

Jerry and I are the only two souls from the US at this conference, and the only other non-Canadian is a lady from New Zealand.  The rest of the participants come largely from the government and private provider sector.  They are a fascinating bunch, and several have participated in this conference for several years now.

The PLAN people were concerned enough when we signed up to come to call us a few weeks ahead of time and make sure that we had some idea we knew what we were getting into.  Jerry faked his answer well enough that they let us come.

But we didn't know, not really.  The level of sophistication is so beyond me that I just smile and nod a lot during the discussions.  Jerry is naive regarding a lot of the specifics of the discussions, but he understands the underlying concepts and is a quick study.  Even I, however, can see that this is exactly where we need to be at this juncture in Down Home Ranch's development.

And Jerry's got that look in his eye that I recognize so well.

Epiphany

Alaina leads the candle procession

Tomorrow is Epiphany, or Three Kings Day to some. 

I spent Thursday afternoon making hot chocolate, getting the robes, candles, and other props ready for our celebration.

The Ranchers were to meet at 7:00 in front of the Pavilion.  Luckily, it was a mild night for the beginning of winter.


Valerie was Melchior


When all were gathered we drew names to see who would play the Three Kings bringing gifts to the Christ child, and fate decreed that we would have two queens and a king.  Crystal would play the Virgin Mary, and Clyde Joseph.

There was general hilarity and ribbing as we donned our costumes, but when we lit the candles for the procession, all fell quiet.  I read the passage from Matthew about the Three Kings, and off we went.

We entered the darkened Pavilion with only our candles for light.  The Three Royal people led the way, bearing their gifts.  Pilgrims followed bearing light.  Along the way we sang "We Three Kings of Orient Are."

Rebekah was Kaspar & Travis was Balthazar

Once we'd reached the creche, the Three Royal People presented their gifts, and the rest of us placed our candles before the babe.  We sang "Away in a Manger."

After a rousing chorus of "This Little Light of Mine" it was time to serve the hot chocolate and rosca de reyes, the traditional Mexican pastry baked in a ring and containing an image of the baby Jesus.  According to lore, the person finding the baby Jesus in his piece must give a party some days hence.  (We'd already decided that the house the winner lived in would host the Superbowl...talk about moving out of the sacred and into the secular!)

 

Clyde and Crystal as Joseph and Mary

I had put a pretty big baby Jesus in the pastry to make certain there was no chance of his disappearing down someone's gullet!

Kyle discovered the baby Jesus in his rosca, so Isaiah House will host the Superbowl!

The Three Royals put away their costumes and dug in.

Photos by Ashley Ashmore

It's official

I'm retired!

Jerry rigged up a surprise luncheon for me last Wednesday attended by people going back to the very beginning of the Ranch, people who were there for our dedication ceremony in the fall of 1991, as well as friends from more recent times.

And what were we dedicating, that intrepid puddle of people standing in the brisk November breeze as children cavorted in the ancient old barn and Blossom the donkey looked on with a bemused eye?

A dream, no more, no less.

Although I bravely carried on as though I knew beyond the shadow of a doubt that Down Home Ranch would someday bloom on the bleak, sodden landscape we were dedicating to that purpose, my practical self raised a skeptical eyebrow.

Frankly, I don't know how we made it.  The smartest thing we did was at the outset burn the ships that might have taken us back to our old life.  We'd quit our jobs, sold our house, and cashed in our retirement to live on as we got started.  It quickly got so that it was easier to keep on keeping on than it was to even think about going back and starting over.

I'm sure we did a lot of things right, as well as a lot of things that didn't need doing at all (I'm thinking of donkeys here), and some that were downright stupid.  But we had a lot of luck, too, very often of the type that Fr. Bob characterized as "divine providence."  (Fr. Bob confessed that he'd told a colleague after meeting us that "Those people either have a lot of faith or they're dumb as a bag of hammers."  Bit of both, it was.)

And the people who believed in us...many of whom were there at the retirement luncheon.  What can I say?  Our first president Carroll, our second president Mike.  Helen and Janet, with whom I travelled all over the Episcopal Diocese of Texas singing with the Glory Bound Singers and without whom I would have lost my mind.

Dan and Sally, still grieving the loss of Dan's dad Ed, were there, daughter Martha and family, Hector and Ashley, and Don and Rita and John, and all the Ranchers and our wonderful staff.  I looked out over the crowd and saw that those who were there in the beginning were meeting those who will carry the Ranch into the future.

It was awesome.

So how do I feel about being retired?  Really terrific!  Full of new ideas and energy, free to wander a bit further afield in areas very dear to my heart, about which more later.  And lots fewer meetings, although I'm still on the Board, so I can't get out of that one.

My passion is to tell the stories of this place, and of these people.  Of the families who have entrusted their children to us, of the Ranchers who came here to build their own lives, of the amazing people who have believed in our mission and poured out all the best of who they are and what they have into it.

I am a happy camper.