What if?



Kelly, about about six weeks old

Yesterday Drew Mariani, on the Relevant Radio Network, had as a guest Wesley J. Smith.  The topic for discussion was the "wrongful birth" suit of an Oregon couple whose daughter was born with Down syndrome.

The couple had had every screening test available specifically to avoid having a child with a disability, and feel that, whatever the reason was that their medical providers had failed to accomplish this, they are owed what it will cost them over the lifetime of their child to care for her.

Which, admittedly, will be a lot of money.  And which, frankly, even now, they don't have to spend.

The fact is there are plenty of families in our country waiting for a baby with Down syndrome.  They're not just willing to take them, they are dying to get their hands on them!  Didn't anybody think to tell that family that?

Long ago, when Kelly was a toddler, my friend, an adoption social worker for a large local agency, called.  She had a client family with a little boy, eighteen months old, with Down syndrome. 

The family had been devastated by the little guy's birth.  Well, nobody's happy to learn their baby is going to live life with a major handicap, so that was no surprise.  Those around them undoubtedly gave them the good counsel and sympathy all such parents receive, with the expectation that at some point the bonding would take place and things would settle down.

But that didn't happen.  Now the couple was going to have a second child, and were thinking about giving the firstborn up for adoption if a suitable family could be found.  I gave my friend the name and number of a group that "brokered" these adoptions for babies with Downs, and a family was quickly found.

They were a big family in a faraway state, quite religious, and the parents and kids had voted to adopt a baby with Down syndrome, having fallen in love with a little girl with Downs born to close friends.  The home study was done, the nursery--seldom empty--was ready, and it looked like a perfect match.

The surrendering family found the decision difficult.  They'd wanted their son to grow up in a family more like themselves, and they weren't churchgoers.  They suspected the adoptive family were very anti-abortion (they were right about that), and even though they didn't plan to meet them, they were uncomfortable placing their flesh and blood among conservative church-goers. 

"But that's probably the very kind of family that will want to adopt him," my friend argued.

Several months went by and the family went back and forth.  My friend, knowing the baby well by this time, thought it was a great match, and worried it would fall through.

However, once the new baby came, the family made the decision.  They would relinquish their first-born to a family that could accept him for who he was--indeed, prize him for who he was.  His new family would tell him the story of how they had waited for him for many months, looking at his picture, longing for his arrival.  How of all the babies in the world, he was the one they wanted, the one they had chosen, and they had loved him since before time began.

It was a good, brave, loving decision to give that little boy up.  I know it was a heartbreak for that couple.  It was not easy, it was agonizing.  I fear that they feel guilty to this day.  But they shouldn't.
They did the right thing.

It's easy to judge these people.  I'm hearing all kinds of harsh things said about the couple suing for compensation, and I admit that for me, the path they've taken is hard to accept.  I remember the very day I fell head over heels in love with Kelly, a bit later than it had happened with my others, but as irrational and wonderful as ever.

But what if that day had not arrived? 

What if?

Just hangin' with the guys

Calvin Keeney, RA of Gabriel House

Of the six Resident Assistants, Calvin Keeney, RA of Gabriel House, has been with Down Home Ranch the longest, having begun working as a Weekend RA in October of '08.

I'd always thought that Calvin had heard about the Ranch from his buddies at Mary Hardin Baylor who worked weekends, but I was wrong.

"Nope," he said.  "I'd gone to the campus career site a few times in the past year looking for a part-time job but I never found anything that interested me and probably hadn't looked on it in a year.  Then I had this really awful computer class that I just hated, and one of our assignments was to find something interesting on the campus career site.  So I went on and there was this thing about the Ranch, so I went on the web site and checked it out.

"Funny how I got the best job out of the worst class!"



Chris, Mark, Mike, Nick, Matt and Calvin of Gabriel House



Calvin was born and raised in the Temple area with brothers Michael John and Drew (Calvin's the middle) and parents Charlotte and Mike.  He played tennis and basketball at Lorena High, where he graduated in 2005.  I knew he was an art major in college and asked him if he'd done much art in high school.

"Not really," he said.  "I was too busy with sports, but when I got to college there was time to really get into it.  I didn't have a lot of background, but I started out with painting and really liked it, and by the time I graduated I was into ceramics in a big way."

I complimented Calvin on the cleanliness and neatness of the home and he said, "Oh, it's totally the guys who keep it this way."

Sweet words to my ear!  I know this modesty for what it doesn't say: that Calvin must be a natural organizer and delegator with high standards for his home.  I asked him what he liked best about being an RA and he was quick to say, "The companionship of the guys!  They're great, and funny, and we're just like a bunch of freshmen that got free of the family home, making our way in the world."

The greatest challenge?  Diet and exercise for the guys.  Well, join the crowd, I say.

Calvin agreed that the recent Ranch cruise was the best ever.  Staff and Ranchers alike seemed to have a great time.  He said, "It's so great seeing the Ranchers living the dream."

One day on the cruise I was sitting in a corner of the library reading, having noticed Calvin in a bridge game in another area.  When the foursome broke for a few minutes, one of the players came over to me.  I figured Calvin had been talking about the Ranch, but I had a surprise coming.  The lady was an early supporter of Down Home Ranch, back in the days when we had nothing but a greenhouse, a barn, and a little mobile home.  She was delighted to see the results of her investment.

Calvin is well into his second year as a full-time RA, and it's a great fit with Gabriel House.  He noted that one of the best things to happen recently was Nick moving to Gabriel from Joseph House.

"Nick and Chris," he said, "boy, those are a pair!  Chris hasn't had a real close friend in the house but he and Nick hit it off right away.  They have all these in-jokes and things they ask each other that set them and everybody else laughing.  Most of the time I don't understand them and when I do, well, sometimes they're not the most polite things to say but I have to laugh anyway."

Calvin enjoys the other staff, and he, Tom, Lori, and Zach joined the gym at the YMCA in Taylor and go there to work out two or three times a week.  Besides bridge Calvin enjoys other games of strategy and looks forward to going to a national gaming conference with his parents and brothers in Indianapolis this summer.

In the future Calvin would like to use his art degree to help the Ranch get its ceramics business off the ground.  We closed with a date to go over to the Spur and inspect the molds and kilns donated to the Ranch.

Frat house to Barnabas House: Not as scary as it sounds

Zach Pace, RA of Barnabas House

"Hey Zach," I said as I passed Barnabas House yesterday evening on my way to Martha House.  "I need to come over in the morning and get a picture of you and your guys.  I want to do a profile on you for the blog."

"Cool," he said.

We set a time for the pic and a time for the talk, and I presented myself promptly at 9:00 this morning for our little talk after the guys had departed for work. 

We started with the basics--born in New Branfels, moved to Houston at age six, where he attended grade and high schools, graduating in 2004 from Langham Creek High in Cypress. 

Zach started university in San Marcos that fall and his mom and dad relocated to Lake Travis, although both are still working, his dad in restaurant food service and his mom as project leader at Quintel, and as a hospice nurse on weekends.

Jerry and I met Zach about a year ago when he was working as a waiter at the Macaroni Grill in the Arboretum.  Kelly was with us, and Zach had our table.  As usual, Zach scrawled his name on the butcher paper on the table and as usual, Jerry started quizzing him about his life.

"Where did you go to school?  What do you want to do with your life?  What's the best job you ever had?"  (Waitstaff beware!  If we enter your domain this is what you'll get!)

Zach allowed as how working in a summer camp for kids with disabilities had been his favorite gig.  In lightning time, out came the business card and the spiel that goes with it.  After all, camp was coming on, and you can never have too many good male prospects for counselors.

"So," said Zach, "I took the card and stuck it in my pocket and thought, nah...I didn't want to work at another camp.  I'd done two years at Elks Camp in Gonzalez and I got so attached to the kids, and then I had to say goodbye...and I was kind of in a low spot anyway, so I just tossed the card somewhere in my messy room and forgot about it.

"Funny thing is, that card followed me all over the house and I regularly found it about once a week for five weeks.  Finally I figured I'd better go on the web site, and I did and saw you all's video and I said 'what the heck' and e-mailed Jerry.  He shot back an answer right away and within a few weeks I was shadowing to become a Weekend Resident Assistant."

Zach quickly became a part of the whirlwind of activity at Down Home Ranch.  He served as WRA on the weekends, volunteered with camp during the week, worked in the kitchen, and he and his dad handled barbecue for 150 the day of the Texas Chainsaw Manicure in October.

"I like to immerse myself in what I do," he said.

Zach was promoted to Resident Assistant of Barnabas House after being with the Ranch about five months.

Andrew, Zach, Clyde, Sterling, Alan and Michael
The Men of Barnabas House

Something that I can't imagine I never knew about Zach until today is that he is a member of Pi Kappa Phi, the fraternity that, as PUSH America, has sent large crews for a week of service during spring break to the Ranch for the past several years.

Zach worked one summer on the PUSH America bike ride, where members ride coast to coast earning money for organizations serving people with disabilities, and dispersing grants along the way. 

"There was a terrific guy named Chris Gastroline who was a rider.  I was support and didn't ride.  Chris was so inspiring--man, that guy could ride all day and not break a sweat.  And he was just an amazing person, so creative, and so many ideas.  And he was the most upbeat guy I knew.  He was a real mentor to me.  But then he committed suicide, and nobody saw that coming, but he did.  Anyway, I decided to take what I learned from him and try to sort of keep his life going that way, you know.  That's what I decided to do."

I asked Zach what adjustments he'd had to make in working at Barnabas House.

"Oh man, don't try to do your laundry on someone else's laundry day," he laughed.  "That's not going to turn out well!"

We noticed right away that Zach is one of those prized employees who regularly goes above and beyond assigned duties.  He takes the couples--who seldom get to go on actual dates--out to dinner and movies on his own time.  He volunteers enthusiastically for special events like the Manicure.  He and colleague Tom (RA of Isaiah House) are cooking up a trip to take a few Ranchers camping in a state park after a trial run at the Ranch's primitive campground, although he adds, "I'm a little worried about those wild hogs down there, you know."

Zach's sense of fun is such that I tease him about having been a court jester in a previous life.  But the truth is, he takes his work very seriously, describing how he manages interactions with his guys on an adult to adult level, how he's worked to get them into work teams of three to keep the house clean, and how he discovered Mr. Clean Febreze does an awesome job.

"I love the challenge," he says.  "I love learning something new every day.  I love working with the other staff people.  There's no way to teach what we need to know from a book.  It's hands-on, and it's real.  Barry's a great resource and I can call him any time night or day if I need to."

At the end of our conversation he added, "You know what?  That night in Macaroni Grill when you guys came in I wasn't even supposed to have your table.  I was working my second shift of the day and I was tired and grumpy.  But then I saw Kelly and perked up, and Jerry started talking to me.

"And I really figure--you know, there was a purpose in how all that happened."

Best cruise ever

You know, we built Down Home Ranch with a vision, a dream--that people with intellectual disabilities could achieve, compete, and make their mark in the world.  And Jason, who's only lived at the Ranch for a few months now, did just that last Friday.

How?  By winning the Hairy Chest Contest aboard the Carnival Triumph.

And don't think the audience cheered him on out of pity, or some latent and misguided sense of  affirmative action.  No, Jason won it fair and square, exhibiting...well...let's choose another word.

Demonstrating enthusiasm, energy, choreographic excellence, and humor in abundance. 

From the first perfect striking of the pose from Saturday Night Live, to leading his group of fans in a conga line, to his mock massacre of the large, blue beach towel, Jason dominated the deck to win his very own...ship on a stick!

Needless to say, our crowd went berserk.  And Jason is memorialized for all time in the Voyage Video, standing proudly in the sun and claiming his trophy with the words, "I'm happy and very proud of myself!"

And we were there to witness it.  All 39 of us from the Ranch, plus assorted parents and friends.

We love our cruises, where the term "appropriate behavior" takes on another cast altogether.  We dance, we sing, we gamble a bit.

We also interacted with dolphins, lounged on the beach, got our pictures taken everywhere but the bathroom and the elevator, ate too much, and, of course, shopped.  Everybody agreed it was the best cruise ever.

After we were home, Jerry got an email asking about the Ranch from a fellow passenger.  "My trip was so much more fun than it would have been without your group on board," she said, and complimented us on our Ranchers and staff.

And that was the frosting on the cake!

From the high...whoops!...seas

Swells today "near gale" they say, but actually it doesn't feel so bad, except it's a little disconcerting to put your foot down and find the floor is not where you expected it to be
But no matter, our gang is well and having a BLAST!  Tomorrow all the pics will go up and you can see for yourself, but for now you just have to take my word for it.

We have schmoozed with dolphins, deep-sea fished, lain on the beach, swum in the ocean, gone down in submarines, ziplined, won hairy man contests, and danced til our toes were nubs.  We are the party people on board and off.

As we were going through customs a Carnival employee approached me quietly and asked how she could find out what employment opportunities were available at the Ranch.  I told her how to go onto the web site and she said..."I want what you all have!"

Yesterday a man working the food service at the beach told Maria, "you are all like a family how you all care for each other."  Excuse me for thinking I might have died and gone to heaven!

Lofty expressions, equally lofty ideals.

Plus...our Jason won the hairy man contest!  Ranch life as usual, ranging from the sublime to the ridiculous!

But what am I doing sitting here at the internet cafe kiosk?!  I need to get with the program.  Somewhere, there's dancing going on!

Is it possible?

Is it possible some parents would not want a treatment that would significantly boost the cognitive functioning of their child with Down syndrome?

Yes, it is.  And no, I'm not one of them, but the whole prospect makes me darned nervous.

When Kelly was in her early teens, and we had already spent a decade working ourselves silly getting Down Home Ranch started, she would say on occasion, "When I'm 21 I'm going to move to New York City and eat spicy food."

And her dad would say (with admirable forbearance, I thought), "Sweetie, if that's what you want to do, your dad will help you do it."

I, on the other hand, would point out that Texas is, in fact, the spicy food capital of our nation.

But just because I get the mommy-jitters at the prospect of my kid claiming a future difference from the one I had envisioned for her, that doesn't mean I can't learn to expand my own horizons and help her dreams--not mine--come true.

Fortunately, the spicy New York food phase seems to have passed.  Still, Kelly wants what her sisters have.  Not all of it is realistically feasible (I suspect the joy of parenthood would fade before the sun first had a chance to set on it...)

But most of it is.

Mad Scientist Visits Down Home Ranch!

OK, so Dr. Michael Harpold is not really a mad scientist, but when Annette asked what he was like I did respond with, "Think Back to the Future."

Michael is the Chief Scientific Officer of the Down Syndrome Research and Treatment Foundation.  Jerry and I met him in Kansas City at the annual convention of the National Down Syndrome Congress.

Jerry and I have decided to dedicate our remaining years in the service of funding for research that will discover ways to effectively treat the cognitive effects of Down syndrome, which is the leading chromosomal cause of intellectual disabilities.

Down syndrome research is show to get going compared to other diseases and syndromes, and receives a ludicrously small percentage of the funding for research into such conditions. One reason for this is that while a single gene might be implicated in the problems caused by some other syndrome, when you have an entire extra chromosome to deal with things get out of hand very quickly.  Not only are there all those genes that make up chromosome #21 to investigate and deal with, they interact with one another in potentially infinite configurations.

Whatever, that's where we are, but the good news is that today we have the computing power to actually begin to deal with that kind of complexity.

Last Wednesday we invited some interested friends to join us in a tour of Dr. Jon Pierce-Shimomura's lab at UT/Austin.  We all have kids with Down syndorme, including Jon, and we're all racing the clock--the younger parents anxious to avoid the increasingingly debilitating effects of Trisomy 21, we older parents nervously facing our children's middle age, over which the spectre of Alzheimer's looms.

Jon's boy is now 10, and Jon is unhesitatingly enthusiastic about the prospect of finding a treatment that significantly impacts the effects of Down syndrome.  What's not to be enthusiastic about? You may wonder.

Well, it's complicated.  I myself am leery of unintended consequences, which wouldn't be known until the treatment had worked.  And I'm not just talking side effects.

If, we hoped, we were able to add 15 IQ points to a person with Downs, that would put him or her right below the