Tuesday, December 27, 2011

Santa comes of age

Years ago, when we'd just moved to the Ranch and Kelly was nine or so, we became friends with a family with a son with Down syndrome in his last year of high school.  The son, whom I'll call Scott, was a charmer--handsome, polite, and funny.

Scott loved the idea of living on a Ranch and saw himself as a real cowboy.  I pitched the idea of taking a barn management class with him so we could both learn best practices.  Each Saturday I would drive to Austin from the Ranch, pick Scott up at his home, and drive on to Lakeway to a large stable there where we would together learn about horse care, feeding, and "setting the barn fair."

We had lots of time to talk, and it was fascinating for me, because although we'd boldly launched this project of building a ranch for people with Down syndrome, the only people we knew with Down syndrome were barely out of diapers!

Toward the end of our class one day in mid-November, we were chatting about plans for the coming holiday season, Scott said he hoped Santa would bring him the Lonesome Dove video.

I was a little flummoxed.  Surely Scott didn't really believe in Santa still at age 19.  But, not wanting to burst some other family's Christmas bubble, I went along.

When I got home, I exclaimed to Jerry, "Scott still believes in Santa!"  We'd been dropping huge hints for a few years to Kelly, though she had yet to take the bait.

I was genuinely concerned as I met more and more families with adult children with Down syndrome who still counted on Santa to deliver the big gift.  I wondered how they could be allowed to come into their full humanity and assume the mantle of adulthood uncompromised by beliefs surrendered by most people by the third grade.

Over the years, however, the hints we pitched to Kelly grew to the size of A-bombs and yet she arrived at age 21 yes, still believing in Santa.  And there remains the fact that most of the other Ranchers do, too. 

What to do? And why does it matter so much anyway?  Where's the harm?

Well, for one thing, we didn't found the Ranch so that people could remain in perpetual childhood.  Yet, let's face it--the most engaging trait of people of all ages with Down syndrome is their childlike openness and sense of fun.  Engaging, heck, it's almost addicting! 

But there must be a way to allow them to grow into full adulthood, not as our wards, but as our friends and colleagues.  Yes, they will always need the assistance we can provide because of our (relatively) umimpaired cognitive abilities.  But trust me, we will always need what they provide, too.  They came into our lives, we came into theirs, and we have changed one another.  That's what communities do.  That's what communities are supposed to do--challenge all of us to be more than we would have been without one another.

Even though sometimes the challenges are not so fun.

So last week I was in my usual Christmas quandry about how to nudge Kelly into full understanding of the Santa Claus story. 

Christmas Eve we met our daughter and her family, and my sister-in-law and hers at Threadgill's for dinner and gift exchange.  The young people got into a discussion of when they'd learned about Santa.  Rachel, my granddaughter, said she'd sat in the driveway with her mom sobbing most of the afternoon, having realized at the same time the truth about the Easter Bunny and the Tooth Fairy.  Kelly paid attention.

Still, after we got back to the Ranch, she insisted on putting the plate of cookies out with a glass of milk.  Jerry and I looked at each other and shrugged.

Christmas morning there was the usual reprint of the Dear Virginia letter, and I casually handed it off to Kelly.  She sat on the couch and read every word.  "Hmmm," she murmured.  "Interesting."

"So, Kell," I said.  "Who is Santa Claus really?"  I was expecting to hear "you and dad," but my daughter is wiser than I give her credit for.

"Poetry, faith, fancy, love, and romance," she said, her finger marking the place on the paper.

Later, after opening her presents, she made a wry reference to "Santa-Dad." 

Tomorrow we fly to Kansas to attend the funeral of our son-in-law's mother, who died two days before Christmas.  We asked Kelly if she wanted to go or stay back at the Ranch.  Kelly hates funerals.

But she said, "I love Bryan so much.  I want to be there to give him a hug."

Welcome to adulthood, my daughter.

Picture credit: Crazy-Frankenstein.com

Friday, December 23, 2011

Stabat Mater

I woke up many times last night, thinking of our oldest daughter, keeping death watch in a hospital in Lawrence, Kansas, for her mother-in-law Nellie.

This same daughter became a grandmother eight weeks ago, and when people asked me was I really ready to become a great-grandmother I quipped, "Absolutely, yes, but I am a little dubious about being the mother of a grandmother."

But there's more than one kind of life passage.  This is big one for my girl, and I am mindful.  I myself kept a lonely vigil over my mother's dying one long winter's night 22 years ago.  Last night I marveled as the image of the baby I first held in my arms came continually swirling before me--awake and in dreams--only to be replaced by one of her sitting by the bed of a dying woman.

It was heartrending, in ways both beautiful and terrifying, bringing into stark relief the bracketing truth of my life, and yours.

I'm undergoing my own rite of passage this Christmas season, formally retiring from Down Home Ranch, closing down my office and stepping away from the day-to-day work of the Ranch.  It's time to turn those things I handled over to others for good. Young people have come along who know how to do them far better than I. (Thanks be to God!)

It's just time.  I'm dusting off my bucket list and seeing what's inside to occupy the years remaining, and a lot of it does have to do with the Ranch, no surprise.  My biggest dream is to see our chapel built on the hill where the old camp center stood, overlooking the Ranch and the pond, favorite haunt of the deer who come to browse and drink.

I have visions of myself as Anna, in her old age, spending her days in the temple, looking for the coming of the Lord.

But of course, He has already come, and has already made all things new, including me, and you.  Our happy task is to seek Him in ourselves and in one another.

It's been 20 years.  I look forward to however many more are granted me.

Merry Christmas and Happy New Year!

Wednesday, December 21, 2011

In Memoriam

We have just learned of the death of Ed Nowland, long-time friend of Down Home Ranch, father of Dr. Dan Nowland, and grandfather of many, including Dan and Sally's Kelly, born with Down syndrome 20 years and some months ago.

After Kelly was born, Dan and Sally asked to meet with us as parents of an older child with Down syndrome.  They relocated their joint veterinary practice to San Marcos from Rockdale to pursue what they felt would be greater opportunity for support for their little one.

Baby Kelly, surely the most adorable redheaded baby ever, died from complications of a heart operation at age five months, but remains ever a member of this sweet, funny, and loving family.  A beautiful gazebo built in her memory stands in Sara's Garden, our memorial garden for babies and children with special needs who have passed on.

For years after we started Down Home Ranch, Dan and Sally came out on Kelly's birthday with the family to donate a day of vet services in her name.  We put them through things most small-animal practices don't need to deal with on a regular basis and foisted off not a few stray dogs on them in the bargain.  They continue to provide services for any Ranch member who feels like a drive to San Marcos.

More than that, they have been faithful friends along the way. 

I never cease to marvel at the friends we have made along life's journey on what I now think of as "Route 21", the pilgrimage we begin when our little ones are born with that extra 21st chromosome--people we'd never had known otherwise, which would have been a great loss in our lives.

Our hearts and prayers are with Dorothy, Ed's widow, Dan, Sally and the girls, and the whole Nowland family.

Thursday, December 15, 2011

Life..with Down syndrome

Somebody else wrote the blog for today. 

Go to http://www.dispatch.com/content/stories/local/2011/12/04/a-chosen-child.html for an exceptionally honest, insightful, and lovely article about the decision to have a baby you know will have Down syndrome.

Wednesday, December 14, 2011

We were jolly by golly

Jason, Kara, Gigi, Mike and Valerie made it happen!
 Last night we had our annual Christmas dinner and secret Santa party.  Gig and the foodies outdid themselves, as usual, and Southside Market kicked in and smoked three yummy turkeys for us.

And a first!  The Christmas ham came from Eenie, Meenie, or Miney--our three lady pigs who were raised on the finest slops ever presented to Swinekind right here on the Ranch.

There was no contest for cutest person at the party
but Gracie Hall would have won it for sure!
 Several Ranchers' families attended, and pretty much all the staff.  The food was great, the company equally so, and God blessed us every one.
The Gabriel House guys, plus Ashley (who just had to get in on the act)
Matt, Mike, Mark, "AA", and Chris

Saturday, December 10, 2011

Movin' in

Ann, Jay, and Dave Jordan have fun with IKEA
It's always touching to see parents on the floor surrounded by nuts, bolts, pieces of wood and Ikea cartons.
Sterling welcomes Jay to Isaiah House
The U-Haul was in the front yard, the new Rancher was being greeted with whoops and hollers by his housemates, and mom and dad had that special look on their faces that said, "We can do this."

Don't know if they actually did do it, because I got busy with the Ranch game of musical furniture: this stuff comes out, this goes to cabin five, that goes to the craft room, and this other is consigned to oblivion.  Then I needed to make supper.
Jay, right, enjoys a Tex-Mex dinner with his buddies
However, I'm sure the room was occupied last night one way or the other because Jay was not leaving the Ranch!

We first met Jay in 1995 when he came to Ranch Camp for the very first time.  He was one of our younger campers, and we were a young camp, with very few facilities of our own, so we spent a lot of time borrowing those of the City of Taylor, driving our 13 campers to town to swim in the municipal pool and picnicking afterwards in Murphy Park.

Jay disappeared on one such mission and we finally called the police to help find him.  Luckily we found Jay before the police found us, so we were able to cancel the call.

As for the years off my life, well I guess that remains to be seen.  Jay's grown up and so has the Ranch, and it seems to be a match.

Wednesday, December 7, 2011

The tummy bug hits the Ranch

The phone rang at 2:30 AM Monday morning.  I was deep in sleep, buried under our down comforter.  Outside it was cold and wet and very, very dark.

It was Ashley, RA of Martha House. 

"Kelly's throwing up and feeling awful," she said, "She a really sick little puppy."  I said I'd be right over.

Well, I would if I could figure out who I was and where I was, which I did after a few minutes.  I even got it together to find the key to the Pavilion pantry to search for the key to the infirmary to search for medications likely to help a very upset tummy.

Clutching them I arrived at Martha House.  My poor girl was doubled up over the trash can and other things were happening as well.  Poor Ashley definitely needed help.

Kelly's main concern was being well enough to go to Wal-Mart that afternoon, a hope I had to dash.

Over the next three hours we coped.  Kelly liked the warm shower and didn't want to get out but eventually had to because suddenly it wasn't warm any more.  I changed her sheets and bundled her into bed.

Between spells of sickness Kelly dozed and we cleaned up messes and disinfected.  Then Ashley heard Kristen in her bathroom and another game was afoot...

"Food poisoning!" we cried!  The girls had gone to a church potluck on Sunday, and it was now about 12 hours later.

Later that morning, I came home and made some of Mom's Chicken Soup, which will strengthen or cure anybody of  anything, especially if it's your mom's chicken soup.  Kelly kept it down and asked for more.

At least Rebekah and Alaina were ok, but uh-oh, Alaina came down with it yesterday afternoon.  Fortunately her mommy lives close by, too. 

In the morning we asked Annette, who had been at the same potluck, what the girls had eaten.  "Wasn't the potluck," she said.  "We ate the same thing and I'm fine.  But now I'm thinking about all those hugs..."

Poor Ashley slept most of Monday, as did her girls.  Kimberly spent the day tending the sick, and for now the campus seems free of the icks.

Annette came down with the crud Monday afternoon, so there was no Wal-Mart for anybody. 

We finally decided it was a "cruise-ship" virus, because we discovered other people in other houses had had it the week before.  The Centers for Disease Control report that one in 15 Americans suffers each year from these "noroviruses."

So now it's a call to EcoLab to install the hand sanitizers that have become ubiquitous on the ships, at buffet-type restaurants, and even at the entrance to churches.

It's not always fun at Down Home Ranch!

Sunday, December 4, 2011

Kevin Patrick Tracy, 1949-2011

Kevin Patrick Tracy was born January 14, 1949 in Freeport, IL.  His father's first cousin was the famed actor Spencer Tracy who was an enduring and caring presence in the family’s life.

Kevin died December 1, 2011, following a grueling four-month battle for his life. His sister Colleen fought right along beside him through it all.

I first met Kevin when he worked at the ARC of Texas, coordinating the Advocates Program for adults with mental disabilities served by the ARC.  Kevin organized conferences and trainings statewide, published a newsletter that went out to people with intellectual disabilities all over the state, and was widely recognized for his dedication to his work.

Jerry was working under the auspices of the ARC in the early 90s, administering a grant project and got to know Kevin as a colleague.

The day before Thanksgiving of ‘92, as Jerry was closing his office to come home for the four-day break, he asked Kevin casually what his plans were for Thanksgiving. Kevin said he figured he’d pick up something at the grocery store and watch the games on TV. Jerry insisted he join us in our little mobile home at the Ranch (actually at that point it was the Ranch.)

Kevin showed up a few hours before dinner, thoughtful gift in hand. I made sure he had a nice take-away meal from the leftovers and he left before the sun went down.

He returned for Christmas, and Easter, and then we all began to say, “Kevin, we can’t eat turkey without you.”

Kevin evidenced a baffling disability at an early age, serious enough that he was placed in St. Colletta’s School for Exceptional Children, which is where Rosemary Kennedy lived, and one of the most respected options for children and young adults with intellectual disabilities at the time. Cousin Spence was instrumental in making this happen.

As for the nature of the disability, I myself quickly diagnosed Asperger’s syndrome, or what we nowadays refer to as high-functioning autism, or autism spectrum.

Whatever, Kevin was far more than a diagnosis.  He was bright, verbal, and read novels, biographies and histories avidly. For reasons we never quite figured out, he was a great fan of the British royal family, and could do a deadpan imitation of Elizabeth II that was “spot on,” as they say.

In fact, since we had no family in common, the royal family became our own surrogate collection of wayward relatives, about whom we gossiped and clucked all during the 90s, as the House of Windsor provided endless fodder.  I recall that Kevin loved to quote QE II's summation of one year as her annus horribilus.

After leaving St. Coletta’s, Kevin relocated to Arizona where he took a position running the state Advocates program. From there he came to Austin and continued his work.

During our holidays we were occasionally joined by “The Fair Colleen,” Kevin’s sister, who lives in Florida, and our circle was expanded. This was especially comforting in the odd years of Christmas, when our daughters and families spend Christmas with their in-laws.

Once while working for the Texas ARC, Kevin and Jerry attended a conference in Buffalo, New York. After hours they were driving around and discovered that a the presentation of Handel’s Messiah would be performed that evening at the cathedral, featuring boy sopranos from King’s College, Oxford, which they attended and talked about for weeks to come.

Kevin’s love for the Catholic Church was profound and genuine and when Jerry converted to Catholicism in the mid-90s Kevin became his sponsor.  He faithfully showed up for the weekly “scrutinies” and proudly stood with his hand on Jerry's shoulder as he was received into the Church.  Likewise Kevin stood as witness as we were married in the church some weeks later.

Kevin rather unkindly contrasted his church’s choir (St. Louis, Austin) with our own little effort, which I headed up as best I could (Sacred Heart, Elgin). He was very proud of his church, and happy when we made it ours as well.

In due time, Kevin decided to leave the ARC, and went to work for Travis County MHMR. Unfortunately, the work climate there was quite different from the supportive environment of the ARC.

Kevin had been long plagued with asthma, complicated by stress and anxiety, which he endured in abundance while working at the agency, and he suffered financial set-backs during this time which didn’t help. Finally, he left his position there for health reasons.

In the years following, Kevin's life became fraught with financial uncertainty and employment difficulties.  We and other old friends tried to help out, but the situation was tricky. Kevin was his own man, and our advice was neither entirely welcome nor often heeded. His physical difficulties by now included diabetes. A crushing blow came when he lost his house and he and housemate Bobby had to move to an apartment.

It was always apparent that Kevin’s disability played a part in his difficulties in life, but it was less often easy to see exactly how.  Yes, he was taken advantage of in ways that Jerry and I would have seen coming a mile away. There was a lack of guile in him that made it hard for him to believe that someone seemingly wanting to befriend him could have less than noble intentions.

The last few times we invited Kevin to a holiday dinner, he failed to come. He was working at Wal-Mart by this time, and sometimes scheduled to work on the holiday in question.  Other times he physically was just not up to it.

Early last August I got a call.

“I’m in the hospital,” he croaked.

“How come you didn’t tell me!?” I asked him.

“I’m telling you now,” he said.

Next day I went to see him, and was horrified. He couldn’t talk, looked dreadful, and had no patience with my usual joking inquiries about the royal family (though he did agree to take The King’s Speech DVD I’d brought).

I asked him if he wanted me to pray, and he nodded yes. I recited the 23rd Psalm, always a comfort to me, and prayed for his recovery. He squeezed my hand.

Still, I went home and told Jerry, “He’s not going to make it.”

Within hours Kevin was taken to ICU, in septic shock. Colleen arrived from Florida. From that time on it has been an unending trial. First his kidneys failed, then he had to go on a ventilator. By the third septic shock he had lost the use of his arms and legs.

If I could wish these past four months away, especially considering it all ended in Kevin’s death anyway, I have to think carefully about whether I really would.

Yes, he suffered so. Why couldn’t he have gone quickly?  But there is more to the story than that.

For one thing, I witnessed a sister’s love so deep and unshakeable it fair took my breath away. Day after day, Colleen was there for Kevin, immersed in the daily detail of his incredible struggle to live.

Colleen and I have become close, as she has become close to other friends of Kevin. She has gotten to know her brother better through the friends he has left behind, and we have been privileged to join her for part of this hard journey.

I’m never comfortable attributing the way things work out to any plan of God. I rather share Woody Allen’s feeling that if I don’t know how the can opener works, what can I know about God?

Still, we have our marching orders.  Thy kingdom come, thy will be done.

I think most of us who knew Kevin probably feel we didn’t do enough for him. In many ways, he was a better friend to us than we turned out being to him.  Now we best honor his life by caring for those he cared for.

One of the things Kevin taught me is that we are happier once we simply accept what others have to give and we relinquish our expectations or demands that they provide us what we want.

So we gather our memories together, and remember Kevin as he was in all his life, not just the hard last months. He lived his life on this earth, and we walked a while with him on the journey.

Now his journey has ended, and we happily find new people on our path, so we join hands and, in the words of King George VI of England, “Keep calm, and carry on” until such time comes, as it will, when our own journeys end.

Kevin would surely approve.

Saturday, November 19, 2011

Come Ye Thankful People, Come

Annette, Scott, Natalie, Rebekah, Kelly, Sterling, Anita & Elizabeth at Thanksgiving Dinner
And they did!

Those that didn't missed an awesome feast last Thursday, as we held our annual Thanksgiving community dinner at the Ranch and made it the first of what I hope is an annual appreciation dinner for our staff.

Mike & Kara fill relish cups as Gig looks on
 Miss Gigi in the kitchen was helped throughout the day by various members of her family, not to mention the Foodies group.  By the time dinner was ready to be served, the party had already begun in the kitchen!

Jason, Robin, Ashley, Gig, CJ, and Jeff show how much fun you can have in a hairnet!
After dinner we presented thank you letters to staff members in attendance.  Ranchers roared in appreciation.  Where else can you feel like you just won Homecoming King or Queen!?
CJ just passed her two-year anniversary working at the Ranch
Thanks to all who made it happen--Miss Gigi, the Foodies (Kara, Jason, Valerie, and Mike) ably assisted by Jeff and Kelly (Gigi's son and daughter), Robin, Ashley from Michigan, and CJ.  We all enjoyed the dinner a lot, the fellowship even more, and did it all over the next day for lunch!

Our warmest wishes for a Thanksgiving filled with love for each and every one of our readers, too.

Thursday, November 17, 2011

Retiring Mom

I am retiring effective December 31st of this year from all my official roles and jobs held over the years at Down Home Ranch.

And they have been many and varied, from donkey trainer to program director (they have more in common than you would think, as it turns out.)

One role I won't give up, of course, is being Kelly's mom, except that looking back I realize how much I have had to step back and let Kelly and others assume the reins of her life.

It has been amazing to watch Kelly mature and grow through the years, from a teenager who hid behind me when confronted with an introduction to a supremely confident young lady who strides toward a stranger with her hand out and a smile on her face.  I feel sure this would not have happened had Kelly continued living at home instead of moving to Martha House in 2006.

Naomi and I were talking yesterday about this very matter.  Naomi also has a child with Downs, a 16-year old boy, and she commented, "I couldn't believe when I first came to work here how high-functioning all the Ranchers were."

She went on to say that other parents have told her much of this "high-functioning" wasn't necessarily there when their Ranchers first came, and that recently, she had an epiphany.

Her boy loves chocolate milk, and was always after her to mix it up for him.  One day the lightbulb came on and she said, "Let me show you how to do it."  To her surprise he mastered the process then and there.  (This works better with chocolate milk than folding one's laundry, I find.)

It's so hard for Mom not to extend the caregiving way beyond points that are necessary and appropriate.  I used to despair over Kelly's refusal to wash her own hair.

She hated the feel of the slippery shampoo and just would not do it.  I even did the "hand-on-hand" thing and poured the shampoo into her hand, plopped her hand on her head and rubbed it in.  Result: one very clean spot and strands of lank, greasy hair.

When Kelly was about 16, we left her with friends while we went to Boston.  When we returned, Gay greeted me with the news that Kelly could now wash her own hair and in fact had done so, with somewhat OK results, four times in my absence.

I guess the time was right, the student was ready, and the teacher appeared.  Some things remain a mystery.

But now, after five years, Kelly knows so much, and can do so many things-- including things beyond me, like hooking up electronics, and all of them she either taught herself or was coached by others. 

And what will I do?  Well, I'll write that book I've been threatening to write for the past four years about how Down Home Ranch came to be.  I'll keep writing this blog and helping with other writing projects. 

I'll dedicate a fair amount of time to helping generate support for scientific research into Down syndrome, and the quest for effective therapies.

And other things you'll hear about along the way.  It's been a wild ride, and one I hope to continue to share with you.

Monday, November 7, 2011

A visit from the Commish

Jerry, Commissioner Traylor, and Kelly
Commissioner Chris Traylor, head of the Department of Aging and Disability Services, which provides licensure and oversight of Down Home Ranch, visited today.  We were honored and proud to show "the Commish" around, and have him meet our high-spirited band of Ranchers, all of whom were busy at their jobs gardening, cooking, cleaning, and tending the animals.

When we first started Down Home Ranch, we were determined never to accept any public money.  We wanted desperately to remain independent, free from needless restraints and cumbersome bureaucratic entanglements.

But...once we began the residential program, we hit a wall.  We just could not raise enough money to pay for the cost of caring for people with major intellectual disabilities, and our families could not afford to pay the amounts needed to support their Rancher throughout their entire lives.

On more than one occasion, we were contacted by other private pay facilities, who were having to discharge a resident (who in one case had lived there for over 20 years) because their trust funds had given out, or their dads had retired.  How much of a heartbreak would that be!?

Jer and I were comfortably middle-class when we decided to sail into the unknown waters of building a ranch for people with disabilities, but we didn't know any people of great wealth.  We built the Ranch over a long period of time, paying as we went.

Rebekah and Brian tend plants in front of the Pavilion
But maintaining a residential program is an all-or-nothing deal.  When you're building a barn, you can build part of it and then take a break while you gather the resources to finish it.  That doesn't work so well with people, and although we as a family had gone through very precarious times in building the Ranch, there was no way we'd put our Ranchers through anything like that.  We needed a stable source of funding.

One thing led to another, and we decided it would be a good idea for the Ranch, and a tremendous help for our struggling families, to seek certification as providers for some of the programs funded through Medicaid for people with intellectual disabilities.

I was the program director in those days, and had to wend my way through the truly daunting obstacles of qualifying for that certification.  One of my tasks was to write policies and procedures based on innumerable rules, statues, regulations, and "tags" that spell out exactly and precisely how and why to do everything under the sun related to caring for a person with a disability.

To my surprise, I found no egregious or unreasonable dictates therein.  "It's all there, every bit of it, for very good reasons," I told Jerry.

At first there was a bit of resistance on the part of advocates and regulators.  They were suspicious of why we would decide to plop ourselves out in the middle of nowhere.  The trend was totally the other way--apartments and single homes for one or two folks at most.  Why did we want to be in the country, all living together?

Well, suffice it to say that it comes down to different strokes for different folks.  Some people like the country, the animals, the friends nearby.  We strove for that old-fashioned neighborhood, where a helping hand is never far away, and by gum, we think we've got it!

We promised to work hard to be the best providers--privately or publically funded--in the state of Texas, and  DADS has come to appreciate that we mean to do exactly that, providing technical help and support along the way.

Did becoming dependent on public support solve all of our financial problems?  Absolutely not.  At most it's a good base from which to start.  The money we receive from the state covers the basics--housing, utilities, food, supervision.  But income from charitable donations and enterprises make the real difference in the quality of life for our Ranchers--travel, lots of off-Ranch activities, superior day program and excellent staff.  Together we can offer terrific opportunities for our residents, and they don't have to come from wealthy families to live here.

When the Commissioner showed up today, we were eager to show him the Ranch and our community up close and personal.  He was warmly greeted by confident, cheerful staff and Ranchers, and we hope he agrees that our partnership with DADS has paid off well all around.

And we thank him for his work, and his caring, for those we all serve.

Monday, October 31, 2011

The Clock is Ticking

Dr. Jon Pierce-Shimomura has a big bet on a tiny worm
 Sometimes Jerry and I feel a bit like Forrest Gump. You know, winding up at the right place at the right time in our lives against pretty unlikely odds. I’ll tell you why.

Last night Jerry and I attended an astonishing event, put on by the Rise School of Austin and the Down Syndrome Association of Central Texas.

Lots of other parents of kids with Down syndrome were there, too, to hear Professor Jon Pierce-Shimomura, Assistant Professor of Neurobiology at UT/Texas, fill us in on his current research and provide an overview of current research into Down syndrome.

Dr. Jerome Lejuene discovered the extra copy of chromosome #21 that characterizes typical Down syndrome in 1959. Finding the extra chromosome was huge, but even Dr. Lejeune did not hold out much hope for figuring out why and how it wreaks such developmental havoc, saying at the time "it would take less effort to find a cure for [Down syndrome] than to send a man to the moon."

That's because, whereas conditions like cystic fibrosis may be caused by one gene, Down syndrome is caused by an entire chromosome packed with genes. Finding which one(s) cause the intellectual disability and physical characteristics of Down syndrome is not a simple task.

And not one many researchers bother with. As Dr. Pierce-Shimomura says, "If you were a researcher, would you rather investigate one gene, or 350?"

In the good professor's case, the answer to this question is easy. His name is Ocean Pierce-Shimomura, he's a bright busy ten-year-old, and he has Down syndrome.

And the Forrest Gump part? Well, in 1984, when our Kelly was five weeks old, I attended the 13th annual convention of the National Down Syndrome Congress in San Antonio. The speaker there was Jerome Lejuene. I had just gotten Kelly’s karyotype (which Dr. Lejuene developed) and it showed she had not one but two extra copies of the 21st chromosome. I was beside myself with worry.

But Dr. Lejuene calmed me down, saying he was certain she would not be doubly handicapped and would probably develop much as she would have with only one. And she has, having turned into a delightfully poised, well-mannered young woman of 27.

Then on the last day of the 2007 NDSC conference in Kansas City, Jerry and I attended the session of Dr. William Mobley, then of Stanford University, who presented exciting news and real hope for medical intervention in the disabling conditions that affect children and adults with Down syndrome.

Then next year Jerry and I went to Yosemite on vacation, and while riding bikes through the park he said, “I think we should go visit Bill Mobley. Let’s drive down to Palo Alto on Thursday.”

“O good Lord,” I said, “he’s an internationally recognized scientist. We can’t expect to just waltz onto the campus and find him and he’ll see us!”

(I should have known better, having been married to this guy for almost 40 years.)

So Thursday we find a parking place and the general area of campus where the lab was located. Who saunters by on that fine fall morning but Bill Mobley? A conversation ensued, a promise to come to Texas was extracted, information was exchanged, and we parted, my husband a satisfied man.

Several months later, Down Home Ranch, the Rise School, and DSACT presented an evening with William Mobley at the UT Ex-Student Center. We combined our mailing lists and invited everyone we could think of.

In the audience that evening was a brand-new assistant professor of bioscience, Dr. Jon Pierce-Shimomura. Someone introduced him to Dr. Mobley, who chose to present him to the audience as a researcher in the field of Down syndrome research.

Jon, actually having been brought to UT to undertake research on alcohol, didn’t know what to say, so he said nothing. One thing led to another, in part because of relationships created that night, and…who knows, post hypnotic suggestion, perhaps…as of today Jon directs the research of a$3M laboratory under a grant from the National Institutes of Health. His research swapping out genes in a tiny, simple worm (with whom we share a large preponderance of the same genetic material, humbling though that be) feeds into research on more complex creatures, suggesting which genes might prove better bets to test. (The worms go from infancy through middle age into senescence in 7 days.)

Even though funding for Down syndrome across the board is miserably low compared to many other conditions, real progress is being made. Let’s never forget: Ten years after Dr. Lejuene's comment, we did send a man to the moon.

There is real hope for our kids— for the older ones, that they’ll avoid the ravages of Alzheimer’s and retain their hard-won accomplishments as they age.

And for the little ones, well…them we’ll send to college.

Meanwhile, the clock is ticking. Go to the following link: ww.dsrtf.org/ to learn how to support Down syndrome research, and don’t think it won’t make a difference.

It will.

Friday, October 21, 2011

He's here!

Baby Adam in his grandmother Carolyn's arms
 For the past few days we've been on tenterhooks as our granddaughter Caitlin, two weeks overdue with baby Adam, was in labor.

Although Caitie, a third-year med student at KU in Kansas City, is tied into the best midwifery and medical science have to offer, she is simply a little, tiny person.  (Mom is almost 6' tall, Dad is 6'3", and brother is 6'5"--so go figure).

Nana here has been wringing her hands since learning of the pregnancy, unwilling to think of Caitie going through what I and her mom went through.

We were right to be concerned.  Baby Adam was born by C-section after 40+ hours of labor, which did not progress according to plan.

Jerry came home to find me weeping in the front yard into a glass of wine, sitting in my bird-watching chair.  At last news came from daughter #2 Martha that Caitie had been taken in for a C-section.

Then Kelly called an hour later, having received a text message from Carolyn, Caitie's mom, that baby Adam "is here".  Kelly was super proud to be the one that announced the news, having quizzed me hourly for the past three weeks, "Is he here yet?"

Martha asked me, "You ready to be a great-grandma?"

Resoundingly, joyfully, YES!!!!!

How blessed are we to see our children, and our children's children, and our children's children's children, soon to be standing strong and tall around our table like young olive trees.

So, welcome to the world, Adam Lee Linscheid, 8 pounds, 3 ounces with a full head of red hair! 

Nana, Bapu, and Great-Aunt Kelly (at 27 yet!)

Wednesday, October 19, 2011

Mchael's retirement plans

Michael enjoys the drum circle
This morning when I showed up at the Pavilion for staff meeting, I saw Michael in the hallway.

"So, Michael," I said.  "Are you ready to turn 40?"  (This will happen on the 10th of November.)

"Yeah," he replied,  "Sorta," looking a little downcast.

Then he brightened and said, "When I'm 100 years old I'm gonna sit in a chair on the lawn and watch all you guys working."

I didn't mention that--speaking strictly for my part in this scenario--that is unlikely to happen.

Michael turning 40 is a big deal indeed, because Michael (after Kelly, who came with the deal) is the Ranch's #1 Rancher, having moved in November 1 of 2001.

And before that, Michael was one of the very first campers to arrive in 1995.  We have videos of Michael dressed in a prom gown (the last costume available during drama class), with Dixie cups inserted in strategic anatomical places which guys don't usually fill out.

In fact, when it came time to introduce himself, he decided "Dixie Cups" was the name of his character.

Michael is a born comedian.  He can speak faux Chinese and sing opera in Italian.  He is greatly gifted musically.  I recall driving home after chorus in Austin late one evening.   Kelly and Daniel had dozed off and I had "Blue Monday" on KUT playing on the radio.  During a station break Michael pipes up in the back seat, "I got those greenhouse blues, oh ye-es I do.  I got those greenhouse blues, oh ye-es I do.  If I don' get outta that greenhouse, don't know what I will do." 

In perfect blues cadence and style.

What a guy.

Sunday, October 9, 2011

Don't punish the disability

Yesterday as Jerry and I drove into Austin I read the scriptures for today's Mass readings.  The gospel was Jesus' parable about the King who invited people to his son's wedding feast, but everybody was too busy, saying "Nah, I gotta work this weekend" or "Sorry, I already have plans."

Well, words to that effect.  Plus a few murdered the men he'd sent with the invitation!

The King was insulted, so after wreaking a bit of havoc upon those who had refused his invitation the first time, he once again sent his minions out to bring guests to his son's wedding feast, but this time they weren't to bother with the list of the in crowd, but to bring in any old whobody they found on the street who wanted to come.

The last part of the parable was in brackets, which means it doesn't have to be read if the preacher doesn't want to deal with it, and this was the part about the guest who showed up and the King asked him why he'd not put on his wedding attire.  The guest had no good answer, so the King told his people to bind him hand and foot and cast him out into the darkness where there would be gnashing of teeth and other unpleasantness awaiting him.

"Wow," said Jerry.  "I'll be interested to see what Fr. Larry has to say about this last part."

But Fr. Larry does not quail before the words between the brackets.  And what he said, assuming I heard aright, was that the wedding guest's attire or lack thereof referred to his spiritual state, not his sartorial one.  He came not to celebrate the wedding of his soul with that of the King's Son, but for some other reason.  So as things wound up, he fared no better than those who chose not to come at all.

Later Jer and I talked about it some more, debating just what state one's soul had to be in before it was worthy to come to the feast.

In our profession there's a time-honored rule: Don't punish the disability.

By this, we mean, don't punish people for what they have no control over.  People with obsessive-compulsive disorder will never be punished, bribed, or nagged out of their condition.  It's their disability.  They can still manage to drive you crazy, even if you know that, which fact might constitute your disability.

The longer I'm in the business, I realize we all have disabilities, of all kinds, many we don't even know about.  We struggle against them, and like Paul, despair of our inability to overcome them.  Throughout our lives, we kid ourselves if we ever think we've made it.  Life is nothing if not a thorough education in humility.

And given that, the proper wedding attire must be the mantle of humility before the King, as we seek new life in Him who, having made us, understands us as no one on earth, ourselves included, ever could.

Thursday, October 6, 2011

Oh what a relief...

Kyle and the mountain of lettuce
So, for the past five weeks or so I've been grappling with the kitchen.  The Pavilion kitchen.  The kitchen through which runs all the food consumed by the Ranch every day.  Which is a lot.

Last week we hired Miss Gigi to run it.  Gigi actually knows what she's doing, having extensive experience in running commercial kitchens and having owned and run a restaurant with her husband.  Talk about finding a treasure in your own backyard, Gigi and Jo live a mile up the road from Down Home Ranch on "the Spur."

"I always knew I'd wind up here somehow," Gigi said. "Every day when I'd drive by going into Elgin I'd see that gate and think...someday I'm going to be there."

Valerie & Mike bag food into household portions

This matters to Gigi because of a very special little girl, granddaughter Presley, who inspired her parents to create a foundation called The Upside of Down to better the lives of people with Down syndrome.  Upside has paid for many a camper to attend Ranch Camp over the few years it's been in existence.

Man, those cute little tykes wake up a lot of love!

So enjoy these pictures of our Ranchers happily hard at work as Miss Gigi gets the kitchen whipped into shape.  Presley's mom and dad might not have envisioned their little one inspiring scenes like this, but then the world is just plumb full of surprises, isn't it?

Kara setting up drinks for lunch

Monday, October 3, 2011

We need your help

The Bastrop County fires as seen from Hwy 71
(Photo by HippieChickenFarmer)

Back in the early 90s we didn’t think much about fire here at the Ranch, until the day I headed up the trail to have lunch at the little farmhouse we had bought and moved adjacent to the Ranch.

Jerry was still working in Austin, so I spent most days alone working in the small trailer that had served as our home until just a few months before.

As I walked around the bend of Sandy Road I saw a large plume of smoke rising up from behind our house. As I got closer I saw the flames racing across the grassy areas under the tall trees in the pecan bottoms. It was still a ways off, but much too close for comfort, so I turned and ran as fast as I could back to the office to call the volunteer fire department and Jerry.

By the time Jerry came streaking in 40 minutes later, fire had engulfed a few acres of our pecan bottoms but fortunately was contained in short order. The early 90s had seen record rain, there was still water in the creek and the shrubs and trees were plump with moisture.

Still, we could see the yaupon holly exploding into fiery balls before being quickly consumed. We knew that luck was with us in those days.

Unlike now.

There are dead and dying trees all over Down Home Ranch. The sentry oaks by the historical cemetery are gone after standing watch for decades. Everything is brown and tinder dry and the only green to be seen is around our well-fed pond.

Fortunately, we’ve been preparing for years of extreme drought, just like this one. In 2007, we began working with the Texas Forest Service on a project we call the Annual Texas Chainsaw Manicure. One day each autumn, volunteers come out to the Ranch to help clear brush and open up wooded areas, decreasing the amount of “fuel” that wildfires need to grow. We’ll be holding the next one on October 15th, and if you want to come out and help, you can call Marci at 888-926-2253 or send an email to her at marci@downhomeranch.org.

Today, thanks to our regular “Manicures” we are an official Firewise community — one of only 42 in Texas. But reducing our risk doesn’t eliminate it.

Just a few weeks ago, on Labor Day, Sharon came rushing over the hill. “You should see the smoke coming up from the south! It’s awful! Come and look!”

We did, and saw huge billowing pillars of smoke rising up like thunderheads on the southern horizon. The day before, as we’d driven into Austin for church, I’d said to Jerry, “With these wind gusts we’re having, and as dry as we are, I hope and pray no wildfires get started.”

He snapped back, “Don’t even say that!”

But they had, and we stood silently, watching the beginnings of what has become our state’s worst fire disaster ever, with more than 1,500 homes lost and more than 34,000 acres burned. Everyone on the staff has friends and relatives who lost their homes.

So we’re more than nervous, we’re worried sick. It could happen here in a heartbeat.

That’s why we’re dead earnest about this year’s Chainsaw Manicure. To be a success, we need to attract as many volunteers as possible to help us prevent this tragedy from taking the 340 acres that we call “home.”Please help protect our Ranchers from the heartbreaking losses suffered by so many of our neighbors.

Your hours spent at Down Home Ranch will never count for more.

Photo by Texas Forest Service, printed in Pegasus News

Sunday, October 2, 2011

God's in his heaven

St. Francis watches over the Benedict House garden
Yesterday Jerry sent me to Bloomer's to buy some winter vegetable starts for the garden.

I loaded my little red wagon and was enjoying walking around the premises looking at all the beautiful plants and fountains and such.

Bloomer's started up just about the same time the Ranch did, with a little house on 290 and some makeshift shelving and shade clothes for a small assortment of plants.  We've known Marcus for a while now, and shared the ups and downs of getting a big dream up and running.

Through the years the Ranch grew, and Bloomer's grew, moving out onto 95 and now covering a few acres or so.  That little front-yard business has grown into an inspiringly beautiful place--you know, the kind you don't want to leave when you get there. 
We buy from them, they buy from us--it's a long relationship by now. 

Anyway, I got my $15 worth of plants and then spied St. Francis standing over by a cactus, and liked him so much I bought him, too.  Total bill now: about $100.

Oh well, that'll teach Jer to send me to Bloomer's.

But St. Francis looks good standing there over our little oasis.  And this morning I got s surprise when I looked out the window and saw over 100 doves flitting about the feeders and bird bath, which I need to fill several times a day now because it's one of the few safe places for many birds to get a drink these days.

Breakfast at the Oasis at Down Home Ranch
The doves were super spooky and didn't come back after I refreshed the water and put out more seed, but Mr. and Ms. Jay and the cardinals were there in short order.

Looks like St. Francis is doing his job.

Monday, September 26, 2011

Finding our way

As I have broadcast to anyone who would listen, I took on the food service for the Ranch a few weeks ago and have been working HEROICALLY (according to me) to get things in order, organized, and working as they should.

This involves interactions with...the Foodies!

AKA the kitchen work team of Ranchers whose job is to assist in the kitchen.

First of all, by general consensus of the Ranch's leadership and program staff, we made the decision a few weeks ago to cease cooking a huge lunch with salad, green vegetable, yellow vegetable, roll, main course and dessert and instead go to...sack lunches.

That the Ranchers prepare themselves.

This was in part because we decided that a) who needs such a lunch to begin with? and b) it kind of didn't make a lot of sense to pay people to prepare their own lunch and then pay them to clean up after it.  Kind of like a snake eating its own tail.

Program liked the change because it's more "normalizing" in that most people fend for themselves for lunch, and a lot of them do it via the sack lunch.

But back to the Foodies.

Another matter is that the fact that we need to ramp up the professionalism of the Foodies in the kitchen.  Supervision has been a little lax, and we (meaning me) are tightening up.

So I held an in-service on dishwashing this morning.  The Ranchers mostly liked it, but one didn't.

"I KNOW how to wash dishes," she stated adamantly.

"Still," I said reasonably, "we can all learn to follow certain rules and do our work better."

She turned her back.  I objected.  She turned around.

Five minutes later as one Rancher struggled to take apart the working parts of a beverage dispenser, our offended party walked out and went to "tell" on me to Marci.  I knew where she'd gone, and what she was doing, and clocked her out of the training so she'll get to do dishwashing 101 all over again.

So...we spent an hour washing five beverage dispensers (but boy, did they need it!)

Later, in staff meeting, we agreed that our commercial kitchen has to pull its weight in the economics of the Ranch.  There are so many ways we could make money out of that kitchen, and we need to make money!  We can cater, bake, sell, go to Farmers' Markets, get contracts with local restaurants.

But we have to be prepared to do it professionally and better than anyone else.  And darned if I don't think we can!

(And I'll make a happy dishwasher out of that girl yet!)

Saturday, September 24, 2011

Last night

The Village at Twilight
This week was a hard week.

Our cook quit abruptly a few weeks ago, and we figured out that our Pavilion kitchen had been suffering from...shall we say, a lack of stewardship...for some time, so I'm handling all the food ordering, shopping, menu creating, and consequent flack-catching for the Ranch for the next several weeks. 

Marci has mostly been wrangling the kitchen crew, and I've been trying to use up inventory (what, cod again!?) prior to getting things under a little more coherent management.

The work is hard--not just for a 70-year old, but for anybody--and the days are long!  Most nights I go to bed with a sore back and wake up long before dawn.  We're talking 13-hour days here.

Yesterday was particularly tough, since we had to get ready for a retreat group coming in, and the Ranchers were going to go to Special Olympics swimming competitions today, so I stayed late making sandwiches and getting the lunch ready for the Saturday outing.

Then I mopped the floor six times in a row until I could finally get semi-clear rinse water.  The San Jose people showed up, and Jerry and I raced around getting the lights on and such.

People often say to me, "Oh my gosh, you must have such a sense of pride and fulfillment whenever you look around this place."

The truth is just the opposite.

Wherever I look I see things that need fixing, watering, painting, finishing, cleaning...

It reminds me of funeral services I've attended for children with special needs, and I've attended more than a few.

The moms stand brokenhearted before the assembly and confess that they never, ever, not for one day, felt they ever did enough for their child with disabilities.

However much they did, and they performed heroic feats, year after year, after year...still, they were always exhorting themselves to do more.  Surely one more half hour of speech therapy per week, one more enrichment class, one more hour of homework supervision and help would make all the difference in their child's life.

But after all was said and done, the kid still had Down syndrome, and given basically decent parenting, one turned out much like another.

Which is a good thing.

Because recent studies indicate that families with children with Down syndrome are among the happiest familiest around--even laying the disability issue aside.  That's because our kids are generally fun-loving and emotionally generous (to put it mildly).

And what do they NOT do?  Well, when they consider the world, they tend not to fixate on what needs fixing, cleaning, watering, or finishing.  They take the world on its own terms and, when in doubt, have a party!

None of which has anything to do with what happened last night, which was that Jerry and I, tearing around fixing this and adjusting that, stopped for a breathtaking moment and looked around the Ranch and really saw it the way it deserves to be seen.

The sun was well below the horizon.  The sky was a dusk rose in the west, and the barn caught the last rays of light.

The lanterns had come on, and the yellow light shone from the houses in the Village.

The Pavilion shone forth, and inside we could see the young Hispanic adults on retreat assembled in fellowship.

And I had a deep, welcome sense for just a few minutes that all the striving, all the worry, all the endless toil over the past 20 years has been worth it after all.

It was a blessed moment, and I know it will soon pass, but it lingers with me today.

And I am grateful beyond measure.

Wednesday, September 14, 2011

A salad's a salad...or is it?

Marci and I worked with the kitchen team yesterday doing some major cleaning and reorganization, .

I was struggling to move a large shelving unit in the pantry to get behind and clean (the result of which today is a very sore back) when Julia walked past me.  She stopped in her tracks, fixed me with a stern gaze, and muttered, "So you're the reason we can't have any more CROUtons!"

Guilty as charged.

After several frustrating forays in our HE-HAW (High Energy Health and Wellness) program, we are once again regrouping and rethinking.

You may (or may not) recall that HE-HAW was established about a year ago at Down Home Ranch to provide a platform for healthy living for our Ranchers by improving their diet and encouraging lots of activity.

The Ranchers are overall way more active at the Ranch than their peers in most other places. Our guys and gals have jobs, and they work hard at them--cleaning stalls, working in the gardens, swimming, jamming to Richard Simmons or just biking and walking around the Ranch in the normal course of their day.

The food front, however, continuesto be a bear of a challenge.  Despite repeatedly providing guidelines we find that within a few weeks, the diet begins migrating back to the Great American Food Pile, where a "salad" may consist of a heap of oversized croutons, a pile of cheese on top, and Ranch dressing poured all over the whole thing.

After all, all those things are found in the salad line, aren't they?

While the above might be amusing,  and its logic unassailable, the overall situation is not.  Women with Down syndrome especially have an inborn tendency to obesity.  They're short, female, and their metabolism runs at about 80% of normal.  It's a huge challenge, and one many parents give up on early in the game.

But we're not going to!  The stakes are too high.

So we decided the only thing to do is to hire a single person who will have authority and oversight over the entire HE-HAW program.  This person will be called the Food and Wellness Coordinator.  He or she will oversee every aspect of the food program, and work closely with other staff to provide guidance in the fitness program.

Although we can use our powers of persuasion and rewards to influence our Ranchers' food choices while dining out or shopping at Wal-Mart, in the end they have the right to buy what they want.

But day-to-day here at the Ranch we can, and we will, assume control of the menu items available, and continue to work on education, portion control, and the lifelong waltz with weight control so many of us--certainly not just our Ranchers--contend with on a day-to-day basis.  It's bound to help, but I don't for a moment assume it will be easy. 

I know better.

Tuesday, September 13, 2011

Good morning, Moon

It's once of those staff-crunch times at Down Home Ranch.  We're all doing double and sometimes triple duty as we deal with unexpected staff departures and unfilled new positions.

Like the Food and Wellness Coordinator.

Changing our "food culture" at Down Home Ranch has been a challenge, to say the least.  We once again have begun grappling with the need to exercise stricter control over the food provided the Ranchers.

So as to get started in this venture, I agreed to serve as interim FWC until we can find that perfect person.

Well, at least I knew what I was getting into.  Suffice it to say that rising long before dawn is part and parcel of the package.  So many things to think of, so many items needing attention, so much to learn and relearn.

So here I was in my office about 6:00 AM when Mr. Lobo appeared at the door.

"Did you see the moon?" he asked.

Of course I'd seen the moon...but then, had I really?   I'd walked out the door, thankful for its light so I could find my car at 5:30 AM, and glanced up at it.

But I didn't really see it.

I went outside with Mr. Lobo and together we beheld its shocking presence in the western sky.  We marveled at it  and Mr. Lobo told stories of how he'd gotten his kids up one night to watch all the planets align in the sky one night in the 80s.

I told of the awesome array of stars I'd seen during the leonid meteor showers in the mountains of Colorado back in the 60s.

Two old friends, standing in the dust at dawn, beholding the heavens.

Thanks be to God.

Image courtesy NASA via Wikipedia

Thursday, September 8, 2011

Not the dream he counted on....

I recall the early days after learning my newborn daughter, Kelly, had Down syndrome.

"Maybe she won't be affected as much as others," people would say in an attempt to comfort us.

But this was unlikely.  Down syndrome carries both a blessing and a curse in that, once you see that typical little face, that fat hand with the crease straight across it, you pretty much know what the future holds.

When Kelly was born, those in the know said things like, "Down syndrome is the Cadillac of the disabilities.  They're easy.  Everybody loves them."

And while not true of everybody exactly, a lot of people actually do. 

But when you're born looking completely normal, and grow up to have a vocabulary to match, but you happen to be, well...different...it gets way more complicated.

In our country, if you have an IQ of under 70, you qualify for a lot of services.  They're not always great, and it's not easy to access them, but at least they're there.

But if you have an IQ of 75 or thereabouts, you're pretty much on your own, tossed out in the world to compete against the guys with MBAs from Harvard.

Not exactly fair.

If you have a lot of support, and people around you who recognize your real gifts and talents, you will be encouraged to move toward independence, getting and keeping a job, and making it on your own.

It comes to be a big, big dream, and you long for the day it will come true--your own apartment, your own friends, independence from those you've depended on for years.

Sure, this is also the dream pitched to the kids with Down syndrome.  Here at the Ranch we work toward independence openly and honestly, but in truth--the real deal is unlikely to be realized.

I'm thinking of this today because I have two friends who trusted in the dream, and it didn't turn out exactly the way they'd dreamed it would.

They had the house or the apartment.  They had the job in the competitive market.

But they had pitifully few people who wanted to spend any time with them.  They were scammed repeatedly, in the case of one out of his entire retirement fund.  And it happened more than once.

Any overture that seemed to offer friendship was eagerly grasped, but the savvy wasn't there to see that really, it was just somebody out to take advantage of you.

Tonight one lies in the hospital fighting for his life, and as I think back on the years I've known him, I'm sad.  He never had the acceptance he craved, the friends he so wanted.  He was our friend, and we were his.  We spent time over holidays mostly, and a few times throughout the year after church, going out to eat.  But he was mostly alone.

On paper, his life has been a grand success.  In reality, it's been a hard, lonely slog.

Yes, we do come to be thankful for the blessing of Down syndrome.  There are lots of people willing to put them down, but there are lots willing to extend them protection, too.  They are identifiable as persons in need of assistance, and I've found that, more often than not, that assistance is there when they need it.

But my heart aches for those for whom it is not.

Tuesday, September 6, 2011

Little Quail

How she survives, I do not know.

She is small, slow, flightless, and gives no evidence of being very smart.

She appeared with another of her kind two months ago.  The other disappeared shortly thereafter, and we've no idea where they came from to begin with.

But two months later, she continues to appear in our front yard, looking for seed that falls from the bird feeders.

Every evening I think must surely be her last. 

I call her Little Quail.

I gave thought to capturing her and thus extending her life, feeding her Purina quail food or something.

But then I thought better.

God knows how she survives the evenings, when the foxes, skunks, coyotes, and bobcats begin to prowl.  Maybe she hides right under my nose, under the large ferns on the porch.

But she survives, alone of her kind, and when she is gone I will be sorry.

But I will be glad that she survived living free.

Image courtesy Wikipedia: brown quail

Monday, August 22, 2011

Home at last

Neighbors at last, Sterling & Jerry walk over to Isaiah House
It's finally happening.  The guys are spending their first night in Isaiah House!

Right now it looks a bit like a scene out of a reality show about hoarders.  Joseph House is cleaned out of stuff, but Isaiah has a ways to go to make the house a home. 
Travis' dad Tony works on the TV

Sterling's room is pretty well done, and Travis' mom and dad came up yesterday to install him in his, but John and Kyle's, well...let's just say they'll need some help establishing priorities.

But Sterling is so glad to have his house buddies, he came over and grabbed us after dinner to come and see.

These guys have been so patient, for so long, and they are very happy to be in the Village.

Meanwhile, at Joseph House, four guys new to the Ranch will be settling in, and yet another dream will come true at Down Home Ranch.

Friday, August 19, 2011

If people with Down syndrome ruled the world

Alaina with Guide to Good Health
At the National Down Syndrome Congress convention a few weeks ago Casey, Calvin, Lori and I attended Dr. Brian Chicoine and Dr. Dennis McGuire's five-hour workshop on promoting and maintaining health--of all kinds--in teens and adults with Down syndrome.

It was an inspiring day.  Drs. C&M have run The Adult Down Syndrome Center of Chicago for 20 years.  These gentlemen know Down syndrome inside and out, and the love, compassion, and respect for those they work with at the center, and for their families, shines through bright and clear.  Plus, they're very funny.

Dr. Chicoine and McGuire are authors of two MUST HAVE books for any family with a child with Down syndrome--no matter the age:  Mental Wellness in Adults with Down Syndrome, and The Guide to Good Health in Teens and Adults with Down Syndrome, both available from Woodbine Press.

Until about 30 years ago, the focus on "rehabilitating" people with disabilities zeroed in on either keeping them completely out of sight, or trying to mold them into seeming as "normal" as possible so as do cause minimal discomfort for the population at large.

Thus people with autism were badgered to look people in the eye, deaf people were prohibited from using sign language to communicate, blind people had to concentrate on looking like they could see, and people with Down syndrome were pestered to leave off the self-talk, get with the flow, and for God's sake--stop hugging everybody you see!

How wonderful to encounter two professionals who encourage us to accept our kids for who they are, to work with their differences and not against, and to do so with love and appreciation for their gifts.  As evidence, I paraphrase Dr. McGuire's piece "What Would Happen if People with Down Syndrome Ruled the World?" along with experiences we've had at Down Home Ranch.

If people with Down syndrome ruled the world...

Affection, hugging and caring for others would make a big comeback. [Very true.  When our Ranchers spy Jerry or me at Wal-Mart, they come thundering down the aisle with arms wide open and huge grins on their faces to greet us even if they saw us maybe...two hours ago.]

People would be refreshingly honest and genuine.

As the expression goes, "what you see is what you get."  [Oh yes!  When Bishop McCarthy told Kelly several years ago, "Kelly, you are such a wonderful girl," Kelly replied simply, "Yes. I am."]

Stuffy high society would not do well.

However, BIG dress up dances would flourish, ...and can they dance!  [Dr. McGuire suggests that weddings are especially popular among people with Down syndrome because everything they love is there: celebration, romance, dancing, license to hug anybody you see, and food!]

People engaged in self talk would be considered thoughtful and creative.  Self talk rooms would be reserved in offices and libraries to encourage this practice.

[When Kelly is trying to resolve a dilemma--say whether to spend the weekend with Mom and Dad or to stay at the Ranch and hang out with her buddies, she will go to her room and have a spirited conversation with herself.  You'd swear there were at least two people in there debating the pros and cons of each side, plus maybe a referee in the bargain!  As for me, I just sit and stare into space as I play ping-pong in my head--same thing, different modus operandi.]

Order and structure would rule.

We have heard that people with Down syndrome are stubborn and compulsive. ... They can get stuck on behaviors that can drive family members a little crazy. ...

[Dr. McGuire refers to this tendency as The Groove.  Now doesn't that sound better already than "obsessive/compulsive"!?  The Groove could make the world a better place where all the trains and planes would run on time! And more:]
  • Schedules and calendars would be followed
  • Lunch would be at 12:00. Dinner at 6:00
  • Work time would be work time and vacation time would be vacation time 
  • People would be expected to keep their promises
  • Last minute changes would be strongly discouraged (if not considered rude and offensive)
  • Places would be neat, clean, and organized (not just bedrooms, but cities countries, the whole world) [This organization Dr. McGuire speaks of is not always immediately obvious, especially in the bedroom, but you just try and move one object in it without the owner knowing it and you'll discover otherwise!]
  • Lost and founds would go out of business [Kelly never forgets her belongings and leaves them behind in hotel rooms while Mom and Dad have been known to do so.]
  • The "Grunge Look" would be out, way out. "Prep" would be very big.
There would be tolerance for:
  • Repeating the same phrase or question over, and over, and over, and...
  • Use of the terms "fun" and "cleaning" in the same sentence
  • Closing doors and cabinets left open by others, even in their own houses
  • Arranging things so they are "just so" [whether they're yours or not]
[Dr. McGuire has many other observations, leading to conclusions such as:
  • The "Rat Race" would be supplanted by "The Mosey"
  • There would be no futher need to pay gurus to teach us to live in the "here and now"
  • Stopping to smell the roses would be a national pasttime
  • Work would be revered, no matter what kind, from doing dishes to rocket science, and doing it right would matter much more than doing it fast
  • Everybody who wanted a job, could get a job and would do it well (except for when "Wheel of Fortune" is on TV)
  • Weather would be the only news necessary
  • All the bad news would go away.  Murder, war, and mayhem would go way down, though there would probably be more McDonalds built.
  • No one would ever claim to be unable to draw or paint
  • Acting and theatrical arts would be encouraged for all
  • Elvis, The Beatles, and the Beach Boys would still be number 1
  • "Grease" "Footloose" and "The Sound of Music" would be the only musicals on Broadway
  • Richard Simmons and John Travolta would be national heroes
  • Fun oldies like "I Love Lucy", "Bonanza", and "Happy Days" would dominate cable programming [I had a senior moment and couldn't remember the name of "Bonanza;"  I found Travis and asked, "Travis, what's this?" and hummed the theme song; BONANZA!]
  • We would only need about 10 movies total, which we would watch over and over
  • We would be allowed to talk out loud during the movie about what happens next
  • We would not need secret service agents or spies
  • There would be no terrorists; everybody would know that being a terrorist is just plain inappropriate!
Many mistakes can be avoided in childhood that would not express until teen or adult years, and Drs. Chicoine and McGuire lay them all out in their books. 

For example, Kelly had a favorite movie, starting at about age 7, The Watcher in the Woods.  I found it suspenseful, but tame compared to movies made today--no gore, very little in the way of violence.  She watched it several times a week with no problems, but when she was 12 all of a sudden she developed a love/hate relationship with it.  She would ask for it in the morning and insist I get rid of it forever in the evening as night came on.  Now, at 27, she still asks about it and expresses fear about it.  We'd have been better off with no movies with any fright factor whatever, and that's pretty doable with younger kids.