Wednesday, September 29, 2010

The Playing Field

It occurred to me just now that Down Home Ranch has a distinct advantage in Special Olympics when it comes to our favorite events.

We have a swimming pool, we have a stable and horses, we have wide open spaces to knock golf balls around in, and we have a bocce court and we all live here so we can do them whenever we want.

Granted, no bowling alleys yet, but it's not out of the question!

Alaina at the long putt
 However, what really warmed my husband's heart was coming home from the golfing event Monday and proclaiming to Jerry, "We really have to have a putting green!"  After that he fixed supper two nights in a row!

And I'm serious. 

When we arrived at Spicewood Golf Club on perhaps the prettiest fall day in a decade, we learned our first skills event would be the short and long putt on the putting green.  I was absolutely itching to grab a club and go at it, but this was their event, not mine, so I restrained myself.

However, I also consoled myself with the thought of that beautiful putting green sitting nobly at the entrance of the Village, resolving that I personally would manicure it with tiny scissors so that never a wretched weed would threaten its pristine lovliness.

We also have a bulldozer....

We've thought about a three-hole course plus green in the past, and this is clearly the time to do it.  Our golfers are pretty good, and they all have the capability of being a lot better.

I expect great things to come out of our golf event this year.  Great things have in fact already occurred: we dragged out all the golf clubs people have given us over the year and have spent many hours sorting through them and collecting them into usable sets.

Below are pictures of our golfing day.

Jerry with about a fourth of the donated clubs we now own

Down Home Ranch Golfers

J.J. awards prizes to Kelly (1) & Rebekah (2)

Michael and Naomi before the meet

Alaina, Natalie & Kristen at awards ceremony

Saturday, September 25, 2010

Things Fall Apart

The center cannot hold.

Well, actually it can, but like liberty, the price is constant vigilance. 

I was reminded of this while reading a piece in the opinion section of the Wall Street Journal (September 23) --A Teacher Quality Manifesto, by Deborah Kenny, the founder and CEO of Harlem Village Academies.

Like Down Home Ranch, the Academies were founded with the specific goal of bringing to full flower the gifts of a population most of society has written off.  In the Academies' case that would be the schoolchildren of Harlem, and in the Ranch's case that would be  adults with intellectual disabilities.

It's an inspiring piece.  It shows that society knows perfectly well how to overcome the bane of underperforming schools but simply lacks the will to do it. 

Society also knows perfectly well how best to provide for the needs of adults with intellectual disabilities, but lacks the will to do it.

What it comes down to is this: it requires people who a) are competent to perform the particular duties with which they have been entrusted, b) who have received sufficient training to perform these duties, c) who understand the ultimate goals of performing those duties, d) who support those goals without reservation. e) who have the  integrity to consistently carry out these duties, f) who are eager to support a culture based on mutual trust and deep respect, and g) who love the people on whose behalf they work.

(I never said it was easy.)

My mantra concerning direct-care workers in the disability field is this:  It's the easiest job in the world to do poorly.  It's one of the hardest jobs in the world to do well.

Years ago a young man--I'll call him Thomas--came to work for us during Ranch Camp.  He was a real charmer--funny, bright, engaging.  The campers loved him.  He was the first they asked about when they returned and always the one the girls fell head over heels in love with.  All the girls.

At first he did a good job, but pretty soon began slacking off.  I knew he'd been in a bit of trouble as a teen, and I had the sense he was trying to decide which way he would go for the rest of his life--to bs and charm his way through, or to buckle down and use his many gifts to make a go of things.  I thought I saw signs of the former, but still, it was so hard not to love this guy.

Then came the last full day of camp.

Thomas and the other counselors were taking the campers into Taylor for the Fourth of July festivities in the park.  As I was issuing last-minute instructions about how careful they were to be at a particular highway intersection (which had seen two fatalities in the past month) I saw the drivers I was talking to looking a bit distracted.  I whipped my head around, and there was Thomas, doing a Chevy Chase impression of me, his hand miming a "yak yak yak," a big smile on his face.

I quickly got a grip on my first inclination, which was to pop him right in the kisser, but simply said, "I do hope you all understand the importance of what I'm saying here.  I love the people you are driving off with tonight."

All went well, but Thomas left the next day, and I made sure I never saw him again. 

A mutual acquaintance later told me that she'd run into him, that he was working in direct care in an HCS home for three men, and he'd laughed as he told her about all the stuff he made up about what he and the guys "did" when filling out his documentation. 

It figured, and it fit, yet it still made me sad to hear it.

When the front door of the house closes, and you're alone in the house with your Ranchers, or when you're head of a work team and you and your Ranchers are cleaning out the kitchen coop, there's not going to be anybody around to witness whether or not you treat them as you'd like to be treated yourself.

But after a while you  see the fruit of their work, and you can tell.

Thursday, September 23, 2010

The Birthday Woman's Weekend

When she turned 21 Kelly informed me she was no longer the birthday girl but the "birthday woman."

So, last Saturday was the birthday woman's 26th birthday.

Incredibly, she did not spend it with the boyfriend.  He very much wanted to go to the A&M game with most of the rest of the Ranch, and she very much did NOT wish to stand up in a stadium for three hours at a football game, even if you do get to kiss every time the Aggies score a touchdown.

Instead, they celebrated together at our small Ranch party for Kelly Friday evening, and on Saturday Kelly, her buddy Alaina (who also lives in Martha House) and I went into Austin to catch a matinee at the Alamo Drafthouse, where you get to eat lunch as you watch the movie (could heaven be better?).  After that we lounged around the condo for a few hours and then met the family at the Macaroni Grill for dinner.

Sister Martha was pumped because she'd found the next-best-thing to a Barbie wedding planner book!  (If Mattel hasn't come out with one yet for Barbie and Ken they're missing a sure bet.)

I got her a new outfit and Dad made up some family pictures for her room.  She got some gift cards, some nifty magazines from Sister Janny, and there's more in the works we hear.

At one point Kelly seemed to experience an acute DVD deficit on the gift front, and when she made her feelings known, I made mine known right back at her and she got quickly back on track.

Later that evening she and Alaina chatted and laughed until long after I went to bed.  It occured to me that this girls' weekend out was just the thing and something she doesn't get to do nearly enough.

Kelly and Alaina share so much through the Ranch.  They have friends in common, experiences they've shared together, boyfriends who are best buds, and more to come.

When I woke up early to make breakfast Sunday morning, however, there was Alaina on the living room couch.  She was snoozing away so I let her be, but when she waked up and I asked her why she'd come out there she said, "The noise!"

"Were our neighbors noisy last night?" I asked, although they almost never are.

"No, you guys were snoring!" she laughed.

Alas, we probably were, but still it's a shock to learn you can hear it through two closed doors!. 

I fed the girls and headed off for choir practice.  I winked at them as I processed up the aisle, and later we all met for lunch.

On the way back to the Ranch I talked to Kelly about writing her thank you notes first thing upon getting home.  Still a mite chastized from the night before, she readily agreed, and when we got home I supplied her with cards and addresses and Ashley, the weekend RA, promised to make sure they got done.

As Alaina went towards her room, she turned and said, "Judy, you have a wonderful family.  Thanks so much for inviting me!"

The privilege was all mine.


Tuesday, September 14, 2010

Touched by many angels

Well, so yesterday's Itunes adventure ended in frustration, with me unable at the last minute to get the new song recorded for practice with the chorus.

But sometimes things work out not as we want them to, but mysteriously much, much better.

Kelly, Sterling & Kara sing
The song in question is known variously as The 151st Psalm or alternatively Testify to Love.  We know it because it was sung by Wynonna Judd on an episode of Touched by an Angel, a series much loved by our Ranchers and staff.

I was over at Martha House Sunday night and Anita said we should learn that song for Bible class.  I thought so, too, and wanted to get a jump up on it by introducing it Monday for chorus, but we know where that plan led.

So after I worked on the web site today I took a few minutes to see if I could manage to get the song onto a disc.  Marci had some spare blanks, so I ran down to pick a couple up and sure enough, five minutes later I had my song.

I called Anita and she said come on down, so I showed up for Bible study this afternoon in the Pavilion.

There were several people there already but more kept filtering in until a majority of the Ranchers were present.  Anita read the lesson for the day, which had to do with faithfulness in small things.

Alan shows Anita his family photo
 Alan showed up a little late, eager to show us a picture of his family taken when Alan was a little boy.  We could see Alan in his dad Jim, who died this week, and he was happy when we told him so.

We discussed the Bible lesson for a while and then put on the song.

Most of the residents were familiar with it and began singing right away.  A few Ranchers stood up and began signing the words.  Soon another few went over and picked up the prayer flags and began to wave them to the music.

Nothing would do when it was over but to play it again.  It was a joyful experience.

Rebekah with prayer flags
 People gathered together at the end of the song for the closing prayer time.  We prayed for Ranchers who'd been sick or had bumps and scrapes, for Alan's family, and as Sterling put it, for "Judy's new eyeball."  (I had cataract surgery a few weeks ago.)

And I knew that song had been meant all along right for today at 2:45 PM, and not a moment before.

Monday, September 13, 2010

The Vesper Light

The Vesper Light
We are tired!

What with Swim Fest, and Jerry flying to California for a memorial service for a cousin, and Family Day, and everything that didn't get done planning and doing those things...well, we are pooped.

I spent most of the day trying to get ready for the reinstatement of our choir for the Ranchers--the Down Home Ranch Chorus.  I had a wonderful new song to introduce, and was determined to get it copied.  Marci helped with Itunes and gave me a CD, and I reactivated my account okay, but nothing looked like it did when I last checked in four years ago when the kids gave me a Nano and I didn't make my deadline.

I made a lot of progress, but gave up about 11 minutes until 3:00, when Chorus was to begin.  I was crushed.  But we spent the hour working on breath control and a few oldies, and I'll have it ready next week.

I mopped up a few work things from the day, came home and assembed an enchilada out of last night's leftovers.  Jerry came home just as the clouds opened up with a late-afternoon shower.  After dinner he fell asleep in his favorite chair.  I leafed through the Wall Street Journal for a while and then noticed that the light had changed outside.

It had turned golden. 

"Vesper light," I thought, and remembered the chant Jerry and I used to sing faithfully together for the first year after we came to the Ranch each evening as the sun went down.

 It's the Phos Hilaron, and is said to be the oldest known Christian hymn.

Oh gracious Light,
pure brightness of the everliving Father in heaven,
O Jesus Christ, holy and blessed!

Now as we come to the setting of the sun,
and our eyes behold the vesper light,
we sing your praises O God: Father, Son, and Holy Spirit.

You are worthy at all times to be praised by happy voices,
O Son of God, O Giver of life,
and to be glorified through all the worlds.

As I stood in the vesper light I remembered the words of the Phos Hilaron, and how after a lifetime living in the city, the cycles of day and night and the changing of the seasons came to mean so much more to our little family of three, living in a tiny trailer on several hundred acres 30 minutes from any town. 

For one thing, we became acutely aware of the daily disappearance of the sun.  As the last rays faded each evening Jerry and I would face the west and, holding hands, together sing the Phos Hilaron.  Usually we stood on our tiny front deck, but sometimes we stood under the big oak tree in the front of the trailer while Kelly wheeled around on the tire swing.

When the sun was gone the dark was almost palpable--no outside lights of any sort.  Just the light emanating from our little home.

Singing the Phos Hilaron sustained us in those early days on the Ranch.  I don't know why or when we stopped singing it.  Maybe as the Ranch grew, people joined our community, and lights began appearing we just felt less the need of it. 

But it's funny how we come to rely on the things of this world, when the greater comfort is to be found in those of the next.

Saturday, September 11, 2010

"10K and a quarter a day"

Maria, Mike, & Marci at Family Day
Today was Family Day. 

We invited the families of our Ranchers out to meet new staff, hear a "State of the Ranch" address, and learn more about the roller-coaster we suspect we'll all be boarding sometime in the next 2-4 years as our nation confronts the fact that we're--oops--out of money and we have to find some other way to fund the needs of our loved ones.

We're not Chicken Little, but we're not ostriches, either.  There's reason for concern, if not alarm.

We jumped feet first into the alphabet soup of disability-talk acronyms.  Seems the CMS might push THHS to do something to DADS regarding the ICFs morphing into HCSs at some point in the future, giving the MRAs more authority, with everything  "un-bundled" and that rhymes (sort of) with trouble, right here in River City!

Parents Ponder the Mysteries
Good news: a lot more people with IDDs will start receiving funds to help them survive.

Bad news: everybody will get a lot less money per person than the somebodies who already receive funds are getting now.

Once we had completely confused our parents, we settled down to discuss life at the Ranch.  Phil talked about the program, Genie discussed the role of the Board of Directors, Casey filled everyone in on current changes in her role as QMRP (now QIDP or QDDP depending on who you talk to), and Marci outlined the day program, activities, and Rancher choice options.

The Ranchers joined us for lunch.  It's always fun to see them when they sight their parents for the first time at such events.  They might have seen their parents two days ago, but you wouldn't know that.  They fly at them with open arms and huge smiles, so happy they're here. 

Overjoyed, Rebekah finds Casey
Even Kelly, who sees us every day.

After lunch Jerry discussed how we propose to replace the income we will surely be losing in the years to come, as the government scales back social services and supports.

It's simple, really. 

We need to find 10,000 people to give us a quarter a day, or 5,000 people to give us half a dollar a day, or 2,500 people to give us a dollar a day...or one person to give us $918,000 a year.

Somehow we suspect it will be easier to find a bunch of people to give us a little money than one person to give us a million.  So we're looking. 

If you're one of those people, check out the 10K on the web site.  If you suspect you know some of those people, please forward this blog.

Travis, Mom and Dad
Several of our Ranchers, trying to express their feelings for our community, sum it up with this.

"The Ranch is my life."

For a quarter a day, you can join the 10K and really help Down Home Ranch keep it that way for them.

Thursday, September 9, 2010

A duck in the barn

"Gimpy" the Duck
A few weeks ago Phil told me that Travis had come to him with his feathers ruffled, so to speak. 

"Phil," said Travis indignantly, "a duck in the barn! A duck in the barn!  Ducks are not in barns, horses are in barns!" 

Phil was tickled by Travis' outrage over the duck.  He told me a camper family had dropped off a pair of ducks with their camper (a little black dog mysteriously appeared over the summer also and we're wondering if maybe Ranch Camp is gaining a reputation for a different sort of respite care than the one we're famous for). 

One duck has apparently disappeared but today the survivor showed up in the barn again.

Jennifer says he's figured out feeding times for the horses, and waddles up from the pond twice a day right on schedule to sneak some oats scattered by the horses as they gobble their breakfast and dinner.

He's a fine duck, but we don't know how long he'll last.  He doesn't seem able to fly, and has a noticeable limp. 

"He broken," said Rebekah sadly.

And the little black dog? 

His name now is now Barnie, and he lives (where else?) in Barnabas House.

Monday, September 6, 2010

Gabriel House wins the Swim Fest...Again!

It's true.  The cartel cames through yet again.  All the Ranchers cheered for them when the trophy was awarded for the third consecutive year.  Following are some pictures from our wonderful day.

Casey and Chris lead the Gabriel House parade around the pool.

The Jolly Rogers: Don, Sterling, Travis, Kyle, John S & John R

Lining up before the swim begins
Kyle boogies to the music
Ranchers wait in costumes before parade

Kelly singing along to 'Mama Mia'

Mark makes speech after accepting trophy for Gabriel House

Across the Universe: Down Syndrome and Autism

When you have a baby with Down syndrome, life suddenly gets very complicated.  You feel like you've been kicked out of one universe and somehow wound up in another.

But after a while the tears dry up and the fears die down and life begins to resume a patina of normalcy.   

The baby?  The baby's adorable.  He's not a baby with a difference to you. 

He's your baby, and you take care of him, and you fall in love with him.

The local parents' group has reached out to you and you meet a lot of wonderful people and their kids with whom you share this common bond.  It's such a comfort.

You learn a lot, so you work a little extra harder to make sure your baby gets the best start possible.
And life goes on.

And then, one day, life stops, and you realize something is very different, and very wrong.

The experts assure you that just as all babies are different, all children with Down syndrome are different and they develop at their own pace and in their own time. 

But you know, and your family gradually starts slipping back into that other universe, the one where everything is strange, and you don't know the rules of being there.

After a while, the experts confirm what you've known for a long time:  There's something else going on with your child besides Down syndrome.

And that thing is autism.

Autism occurs in about 5% of children with Down syndrome, a considerably higher rate than with the typical population.  Most often it's mild. 

But sometimes it isn't.

We are friends with a family whose son with Down syndrome is severely affected by autism.  We have worked on projects together, and they've visited the Ranch on many occasions.  We've enjoyed dinners out as couples, and in their home while their son was under the care of someone else.

Then several weeks ago we invited our friends and another family, also with three children, including a son with Down syndrome, to come out to the Ranch, have dinner and a swim, and spend the night in our cabins.

We had been around our friends enough to know that their son, whom I'll call Sonny, requires constant vigilance, but he loves the water so our plans would fit well with his needs.  Maybe it would even allow for some visiting time with his mom and dad and the other family.

It was a beautiful evening.  It was, however, a real eye-opener, too. 

Here we thought we'd had some idea of life with Sonny, but in truth we'd known nothing at all about what it takes minute-to-minute to keep Sonny and those around him safe.

First we noticed that our friends were hyper alert at all times--Sonny's sisters as well as his parents.  Someone's eye has to be on Sonny every moment of every day.

Fortunately, Sonny was mostly content to stay in the pool.  Our friends had recently invested in a pool for their home and say it's the best money they've ever spent!

But still, Sonny could not be trusted close to the other family's smaller children.  He'd grab their hair or do something similar if he had the chance.  His sisters--one older, one younger--were quite adept at redirecting him when a potential opportunity for mischief cropped up.

In a lull between interventions, Sonny's mom and dad spoke of having had the chance to attend a Joni and Friends family retreat a few weeks before at Camp Allen.

"We gave up vacations a long time ago, you know," said the dad.  "Sonny's environment has to be totally secure.  He tears cabinet doors off their hinges if he gets a chance.  He has no sense of personal safety and he doesn't sleep.  He will walk out the door in the middle of the night in a strange city, so we always have to move the beds to block the door so he can't.  This retreat is the first time ever we've just been able to go somewhere and turn Sonny over for the day to someone else, and we and the girls could enjoy the activities and surroundings, but still come together as a family for part of the day, as our whole family."

They'd waited three years for their name to come up on the Joni and Friends list.

Sonny's autism is so profound you don't even notice the Down syndrome.  I recalled the first time I'd talked with his mom about his condition. She had confided that she was depressed about his current educational goal as laid out in Individual Education Plan at school: by the end of the academic year, Sonny was to be able to board the bus by himself--not board the bus, find his seat, sit down and stay there for the ride.

Just go up the stairs of the bus.

Sonny was ten years old.

I try to imagine life for Sonny's family.  There you are, coping as best you can, more and more isolated as your son grows older, bigger, and stronger. 

You have little in common with the parents on one side of you who have raised their daughter with Down syndrome into a cheerful and competent young adult.  Neither is your experience like the young family whose eight-year-old son with Down syndrome is playing games in the water with his siblings and friends, so able and tuned-in it's hard to believe he has any disability at all.

The Down syndrome pretty much excludes you from the autism community, and the autism pretty much cuts you off from the Down syndrome community.

And so you live, stranded in that other universe--loving your son, doing the best you can--coping, coping, always coping.

And it's really, really hard.

Images courtesy of:
universe: Google images
boy in pool:
baby with down syndrome:

Saturday, September 4, 2010

Swim Fest--The thrill! The suspense!

Every year it's the same story. 

The BIG family pulls out all the stops!  There must be 732 people in the immediate family alone.

They are an organized and determined bunch.  I'll give them that.

Oh, they pretend to be nice.  They donate to all the houses under the pretext of being "fair," but we all know they have but one goal: to win the coveted Swim Fest trophy for Gabriel House.

We think of them as...the Swim Fest cartel. 

We know their ways.

First $30 bucks here, and then $40 bucks there.  Some little diversionary lulls and tactics along the way to throw us off the scent.

And then, Labor Day Weekend, when the gloves come off.

This is the weekend wherein, if we had 732 relatives we might have a chance to secure the trophy for our daughter's house.

But sadly, as orphans, raised by the Little Sisters of the Poor, abandoned at birth, never knowing the true love of a real family, we were not so blessed.

We labored, first in the streets of our native Calcutta.  We made our way to America.  We took the jobs none others would do, paying for tens of thousands of dollars worth of plastic surgery out of our menial wages to better assimilate into our beloved adopted land.

We built a home for those who need us.

And we labor still-- raking the bare land, sowing the seeds, hoping for a meagre harvest to feed those who depend upon us, grubbing deep into the exhausted red soil for one last small potato, and we say, our fists raised to the setting sun:

"As God is our witness, we'll never go hungry again!"

No, wait a minute.  That's not what we say.


Go to the website at and vote for the house of your choice.  All proceeds go to the Ranchers' Vacation and Activity Fund.

(And heartfelt thanks to all our families and friends who so generously support our efforts to make sure our Ranchers enjoy a great quality of life, and especially to the Gabriel House Cartel.

But remember, it isn't over yet....)