"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.

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.

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: http://www.rivercitypools.com/images/boy_swimming1.jpg
baby with down syndrome: dsansw.org.au

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.

We say "THERE'S STILL TIME TO DONATE TO THE DOWN HOME RANCH SWIM FEST!"

Go to the website at http://www.downhomeranch.org/eventsswimfest.shtml 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....)

I Don't Postpone

Margret

A few weeks ago I was sitting in my office in the barn and the phone rang.

“Hello, Judy. This is Margret Hofmann. I’m 85 now and I don’t postpone things. So. When am I going to see you?"

We settled on a date. I told Margret I’d pick her up and bring her out to the Ranch, which she’d last seen in 2001. Unbelievably, that was also the last time I’d seen Margret.

Margret and I met in 1980, when I began attending the Friends Meeting of Austin (Quakers). She was clerk of the meeting.

Quakers must either reach consensus or have objections withdrawn in order to make decisions, not the easiest sort of business meeting to run, but Margret was good at it.

At first I was frankly intimidated by Margret’s efficient, non-nonsense manner. John Belushi’s Samurai skits were a staple on Saturday Night Live in those days, and some of the younger Friends took to referring to Margret as “Samurai Quaker Clerk.”

With great affection, you understand.

Margret came of age in Germany during WW II in a time, and in a place, where there was little reason for belief in the goodness of mankind. Her Jewish mother was interned and murdered in a concentration camp.

Margret lived through the Allied fire-bombing of Dresden. She decided early on that violence was never the answer to anything, and dedicated her life to working for the good of mankind.

In the scary days after our daughter Kelly was born with Down syndrome, Margret made the trek several times a week from south Austin to our home in northeast Austin, bringing casseroles and interesting things to read. She was the friend you turn to, the friend who was there.

Sterling, Judy, Kelly & Margret

How could I have let nine years pass without seeing her?

I picked Margret up one Thursday morning and we headed for the Ranch. We quickly got up to speed on family news, and into lamentations concerning the headlong decline of the English language. I waxed eloquent on the joys of diagramming sentences, but since Margret’s mother tongue is German she never had the pleasure.

“Better than Sudoku,” I said.

We had lunch with Margret’s daughter Heidi and toured Three Oaks Mine, where Heidi is human resources director. Jerry had been trying to connect with us all day so he could see Margret, so we came back out to the Ranch.

Margret and Jerry happily discussed the various large post oaks. Margret is famous for her work saving large trees from the developers in the 70s and 80s, and was recently honored by the City of Austin by the creation of the Margret Hofmann Oaks park, a tiny triangular cluster of old oak trees located on a quarter acre opposite the Council Chambers, where she once served.

Margret has struggled with heart problems for the past quarter-century and is frail in body, but indomitable as ever in spirit. She claims her cardiologist keeps her alive “for the stories,” and she has them in abundance so we confidently look forward to having her around for years.

It’s been a high honor of my life to know her.

Once upon a time....

Stephen Covey says everything that comes to be is created twice--first in the imagination and then in the material world.

So at Staff Meeting yesterday morning Jerry showed everyone a little pamphlet he and I made up and sent out way back in 1989.  In it we described the Ranch, years before it would be built, but already real and alive in our imagination.

Down Home Ranch was described as if it had already come to be, long before we had even seen the land where it would come to be or met the multitude of people who would help us bring it into being.

Some things didn't turn out exactly the same.  The Ranch is on 340 acres instead of 125.  The housing pattern is different, and there are only 35 of us living on the Ranch as opposed to the 85 we envisioned.

But what strikes everyone is how close the heart of the dream described in that pamphlet from 21 years ago is to the reality that is the Ranch today.

It spoke of a community where people with Down syndrome can live with dignity, where they can perform real work that matters, where they can explore their spiritual relationships and continue lifelong education in the midst of a loving community consisting of other people who want to do the same.  Above all, it would be a community of encouragement and a place to forge true, enduring friendships that can last a lifetime.

We envisioned homes, a bakery, a woodshop, gardens, greenhouses, crafts, stables and barns, horses, cattle, chickens, dogs and cats and even a swimming pool.

Nobody is as astonished as Jerry and I when we walk out in the morning and look around and--there it is!  People say, "Oh, you must be so proud," but nothing could be further from the truth. 

Far from proud, we feel humble and somewhat stunned.  We look back and marvel at the goodness of literally thousands of people, living and dead, who provided the means to build this place, who serve as staff, who volunteer, and who serve on our board.  We also realize that we have been phenomenally lucky in ways it has taken years to recognize.

"Down Home Ranch was first and foremost a place for persons with Down syndrome to live and to work, to love and be loved.  To laugh, to cry, to grieve, to labor, to play, to sing and dance.  Others with physical or mental differences and challenges also became "Ranchers."  The Ranch depended upon these Ranchers, and they upon DHR.  All Ranchers, as well as DHR staff, shared in the successes and failures of the Ranch."

That was the dream.  Now we daily live the reality.

I left the staff meeting and walked out into the cool morning.  Christopher, whom we've known since he was a toddler and who has lived at the Ranch for several years, had settled himself down next to Lady, our old fat black lab.  Christopher was earnestly singing "The Sun Will Come Out Tomorrow" to Lady, who looked soulfully into Christopher's face as he sang and gestured.

I can't think of a better way to start the day.