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.

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.

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.

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.

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!)

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.

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.