Sunday, February 26, 2012

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!

Monday, February 20, 2012

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.

Saturday, February 18, 2012

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

Welcome home

It's been a few months since our friend Kevin died. 

As with any death, there are "affairs" to be put in order--the closing of accounts, paying off of balances, and such like.  Kevin's sister Colleen came in from Florida and spent the past six months with Kevin in the hospital.  Now she is about to finish tying up the loose ends of a life and return home.

And a big concern has been Kevin's roommate, whom I'll call Andy.

Andy lived with Kevin for the last 20 years or so, and depended on him to navigate the practicalities of life.  Andy has a significant intellectual disability, and now in his late 50s, daunting health challenges as well.  What will happen to Andy?  He can't really live on his own, and even if he could, would not be able to afford to.  He doesn't want to live in a group home, fearing loss of freedom and--his words--"they steal all your stuff." 

We have all been feeling the pressure mounting as the day for Colleen's departure approached.  Not many acceptable options were likely to pan out within the time frame we had to work with.

And not only that.  We love Andy.  He's a great guy with a big heart and a lot of spunk.  He's sufferened some heart-breaking losses in the past few months.  We wanted a place where Andy would be welcomed and appreciated for the great guy he is.

And then I remembered Mary Catholic Worker House.  Hoping against hope, I sent off an Email, along with a heartfelt prayer, to the Director, Lynn, who ironically began this ministry about the time we began the Ranch, and for the same reason: to welcome the ones the rest of the world spends little time thinking about, much less caring about.

Within hours back came one of the most beautiful communications I have ever in my life received:  Judy, we would love to meet Andy.  Please let me know when you can bring him out to meet everybody.

Last Tuesday I picked Andy up and we trundled down to south Austin to meet Lynne and the men currently living at Mary House.  A large concrete sculpture of the Virgin of Guadalupe announces that this home is special.  Gorgeous gardens take up the front lawn, and very contented cats lounged about taking the sun.

Inside the home is clean and cheerful, eclectically furnished and equally eclectically peopled.  Lynn arrived shortly and we went back to her quarters to talk.  She explained the rules to Andy, including the one requiring everybody to be present for the evening meal unless urgent business dictates otherwise.  This rule is so the community will have a set time each day for fellowship, encouragement, and catching up on what's going on in one anothers' lives.

As I was leaving I noticed the picture of Jesus praying in the garden--a popular representation found in many Catholic homes. 

But what caught my eye and set me laughing was the caption below, which read: Jesus waiting for government services.

Indeed.  All this and a sense of humor, too. 

Thanks be to God!

Friday, February 17, 2012

The eggs and us and other stuff besides

Clyde, Travis, Sterling and Travis rejoice over a new little peeper
Mr. Pat and the Garden Team, who care for the chickens, saved up a couple dozen fertilized eggs and Mr. Pat brought his incubator in to his office in the Garden Center.

"February 14th Due Date" said the sticky on top, and sure enough, tiny beaks began tapping away on Valentine's Day.

So far we have about 20 hatched and several more to go.  It takes about a day for the little peepers to get out of the shell, a lot of work for your first day on the job!  They'll stay in Mr. Pat's office under the heat lamp for several more days and then move to the Hen Hilton Extension where they'll grow strong and replace the chickens we've lost to various causes--racoons, owls, hawks, and the like--since our original 44 took up residence.

The chickens were our first foray into self-sufficiency and the only one to make it so far, although hay is almost there and we're using up our excellent pork from our three lady pigs we raised up last year.  (Actually we did grow all our own hay for about and year and a half but once the drought really took hold the grass just said, "Unh-uh!" and retreated far down into the soil.)

So eggs we have, and they are wonderful.  They should be even better with the fall and winter rains we've been blessed with, because the hens will find more tasty bugs and seeds than they've been able to do the past summer and before.

And that's not the only babies on the Ranch!  We have one new little bully calf and two heifers on the ground.  We'd hoped for four in all for this year's calf crop, but it's looking like Mama #4 mis-fired.  She did fine last year so we'll breed them back in a few weeks and see what happens.  This makes four breeders, last year's calf crop of two bullies and two heifers, this year's three, and a few more we acquired. 

Soon it will be time for pigs again, and we'll be planting orchards in the next few weeks along with our spring garden.  March will probably bring some ridiculously cold weather but we hope for nothing like last year, when it was 11 degrees for most of a whole day!

We're ready!

Sunday, February 12, 2012

It always grows back

A few weeks ago I popped into a hair-cutting establishment for a trim.  I go to the same place each time but take luck of the draw as to who wields the scissors, which is a remarkable statement of faith, now that I think about it. 

But what the heck, I figure.  It always grows back.

This time an alarmingly extroverted young woman took me in hand.  I told her what I wanted and she set to her work, chattering all the while about this, that, and the other thing.
And then the bomb, "I just couldn't believe how RETARDED I was!"

"Whoa there, babe!" I interjected immediately, holding up my hand.  The scissors froze in mid-air.
"I have a daughter with Down syndrome," I went on, "and she's a wonderful young woman and the light of my life.  Please don't use that word in that way."

She looked predictably mortified.  "I didn't mean anything bad about it," she said.  "It's just something people say."

"I know you say it without thinking," I said, "but it hurts to hear it because it dismisses any value a person like my daughter might have.  I just wanted you to know that."

She resumed clipping my hair and I trusted her professionalism would trump any desire to scalp me.  I was right, and she finished the cut very seriously and carefully, if silently.

I've noticed that another word thrown about casually and pejoratively today among the young is "gay."  It's Oh, that's so GAY and Oh, he's so GAY

I just read the New Yorker article on the young violinist from Rutgers, Tyler Clementi, who committed suicide early in his freshman year after his assigned college roommate posted innumerable insulting and silly comments on various social networking sites about his being gay even before they met each other, and continued after they moved into the dorm room together.  

Yes, Tyler was gay.  He had just come out to his family and he didn't hide it at school.  But that was incidental to the way his tormenter used the word, which was to emphasize that, well, Tyler just didn't count, he was less than a nothing, not even a zero in the human equation.
Two lives--one gone, one ruined, however the trial turns out.

I didn't get on the bandwagon a few years ago to ban the "R" word. We pretty much need a term that describes what we're talking about when we discuss issues that affect people with intellectual disabilities, or as we used to say, mental retardation (which was itself quite an improvement over the terms "moron," "imbecile," and "idiot" used as clinical terms in their day.)

And there is no need to discuss retiring the word "gay."   Unlike people with intellectual disabilities, gay men are quite capable of determining what term to use to describe themselves. 
But what happened to Tyler, and what happens daily to people with IDDs, is absolutely the same.

These labels are used to push people out beyond the human fold, to strip them of their dignity as God's own beloved children, to shun them and set them apart.  All of us have a deep, inborn fear of being rejected.  We know in our hearts that our very lives depend upon being accepted, loved, and counted in the fellowship of others.

Unfortunately, although we banned the "R" word from human speech, I suspect it won't be long before we hear the mindless taunt of, "Oh that's soooo IDD!"  Because it always grows back.

So instead of banning these terms, let's ban the attitudes that lie behind their intent to hurt, to dismiss, to characterize a fellow human being as someone undeserving of the basic respect we must accord all human beings.

Please.  Speak up, and speak your heart.

Friday, February 10, 2012

Well glory hallelujah!

Why can't I make a nest?
Yesterday I wrote about coming advancements in the possibility of medical intervention to overcome the disabling effects of Down syndrome in the brain.  This was in the context of a promise to a family with a newborn with Downs.

Little did I realize...

In today's Wall Street Journal there is an article on page A3 entitled "New Attack on Alzheimer's."  It reports the success researchers at Case Western Reserve have had in reversing--not preventing--reversing advanced Alzheimer's in mice bred to develop the disease.

So? You may ask.  Mice are not men and Alzheimer's is not Down syndrome.

Very true, but what works in a mouse often works in a man, and--something not generally known--all people with Down syndrome develop Alzheimer's if they live long enough.

So you see, we parents of children with Down syndrome have only a few years to relax between the shock of our kids' birth and the anxiety of advancing age and what it almost surely will bring for those we have grown to love with all our hearts.

And it comes on 20 years earlier than in the normal population.

There is a "substance of interest" implicated in all this, as the detectives might say, which is well known to researchers.  Its name is beta-amyloid, which everybody has in their brain, which is not a good thing.  However, the healthy brain has a clean-up crew that routinely keeps the beta-amyloid in check.

The Alzheimer's brain, and very likely the brain on Down syndrome, fails to do that.

Good news:  a drug called bexarotene, generally used for skin cancer treatment, reversed the symptoms of Alzheimer's in mice within 72 hours.  Mice with Alzheimers were unable to engage in normal mouse behavior like creating a nest out of paper scraps left in their enclosure.

After beginning treatment with this drug the mice began to make nests. 

Pretty stunning results, but not the first.  Several years ago researchers were able to normalize mice with a substance.  After treatment, mice with Down syndrome who couldn't run a maze for their dinner were suddenly able to do so.  However, the substance used is highly toxic to humans and not a candidate for our species.

Still the evidence is clearer all the time.  It can be done.  And bexarotene is safe for use in humans.

On February 14, Dr. Michael Harpold, Executive Director of the Down Syndrome Foundation for Research and Treatment, will visit Down Home Ranch.   Wednesday the 15th, he, Jerry and I, and others will tour Dr. Jon Pierce-Shimomura's Down syndrome research lab at the University of Texas.  Then we'll have a brain-storming session afterwards.

I'm champing at the bit to talk over these new developments with Jon, who works with tiny nematodes instead of mice. 

Disclaimer:  I am not a scientist and this post reflects only my best understanding of what I have been able to glean.  Please check out original souces by clicking on links.

Thursday, February 9, 2012

Another detour on Route 21...

I saw a friend last night who'd been out of town for several weeks to be with her daughter for the birth of her first baby.  Almost before I could ask her how things had gone, she said, "We have to talk."

In that instant I knew that the baby had been born with Down syndrome.  She confirmed it and we hugged.

I was overcome with sadness for my friend and her family, even though I know this little guy is going to bring incomparable joy into their lives, touch many hearts in his lifetime, and teach the whole family how to reach deeper into the fountains of love and compassion than they had ever imagined possible.

But let's face it: that young couple didn't sign up to be trailblazers.  They only set out to do what millions of young couples do every year: start a family and have a normal life.  That dream has been shattered.  Other dreams will take their place in time, but for now the family is left to live among the shards. 

It hurts so bad.  It is such a heartache. 

One mother described her feeling about having a baby with Down syndrome as being like having planned the vacation of a lifetime in Italy, getting off the plane, and realizing you have wound up in Holland.  Now, Holland's a great place, but it doesn't match up with a lot of the hopes and dreams you had for Italy.

Still, I have lots of good news for my friend and her family.  First of all, as Kelly's pediatrician told us in the hospital, "You're going to have a great time with this kid."  This is so true, if impossible to describe and imagine exactly how.  Suffice it to say that Holland presents lots of unexpected delights!

But also true is this:  So much has been learned since Kelly was born about so many things that will make a real difference in this baby's prospects in life.  First there are all the infant stimulation and educational interventions, which make a big, big difference. 

Add to this is the fact that every day researchers are getting closer to unlocking the secret as to what causes the developmental delays of Down syndrome.  Trials on young adults with Downs are even now underway to test a promising new drug.  I am convinced these little ones will do everything their brothers and sisters do in life--grow up, go to college, have a career, get married, maybe have a family of their own.

All that said, my advice for today is this: Just take a deep breath, say a prayer, and fall in love with and enjoy that baby, one day at a time.  God knows the heartache, and God will bring the healing in time.

And all will be well.

Photo courtesy Google Images

Monday, February 6, 2012


Yesterday's gospel reading was on the healing of Peter's mother, who was abed with a fever when Jesus visited, and he healed her on the spot.

Fr. Larry thus addressed the subject of healing, surely a perplexing one for most of us, since we all have had the experience of praying--desperately--for a loved one to get well, only to suffer the heartbreak of loss.

But of course Fr. Larry was talking about healing, not curing, which is a different thing.  Filtered through Judy's brain, here is his explanation:

Healing is not just about making us feel better physically.  Healing is about the assertion of God's rule over illness, be it mental, spiritual, or physical.  Something has gone awry, off-center, out of tune.  We don't live in a perfect world, with perfect bodies or perfect psyches.  We are scarred and marred, by life and family history, by where we came from as human creatures, and by what we endured in our evolutionary history. 

And when all is said and done, we die anyway, so healing is only temporary in any case--whatever the cause, whatever the cure.  Seventy years is our lot in life, says the Psalmist, 80 "if we are strong."  Amazing that what was true several thousand years ago remains pretty much true today.

So, what does it mean to "assert that God rules" over illness, as over everything else?  I have to go very personal at this point.

I wrote in my notes, It may be a question of affirming that Jesus rules my life, and not my sickness

I have suffered all my life from a body that just won't "stay in tune."  I am so reactive to stress that I joke that I must have adrenal glands the size of footballs.  I finally came to the conclusion that in many ways I suffer from post-traumatic stress disorder from a childhood growing up with a violent alcoholic who ensured that life was continually off-balance and out of tune.

This has manifested in panic attacks, wild swings of blood pressure, cardiac arrythmias, and off course all the effects of drugs prescribed to deal with these disorders.  On any given day I have sinking spells where I feel weak and as if I will faint.  If a car cuts me off on the highway a flood of adrenaline sends my heart rate and blood pressure soaring.  I flush like I'm burning up, or freeze when the sun is warm and shining.

I've wound up in the ER because of my blood pressure roughly once a quarter for the past several years.

Then last summer I went to a six-day silent retreat focusing on centering prayer. We had four 45-minute silent meditation periods per day.  I completely fell apart on the second one.  The retreat mistress said this was not unusual and I should just stick with it and bind my heart to selected scriptures.  This I did. 

I experienced amazing healing during that retreat.  Shortly after, I was working at home in a journal on confronting shortcomings and sins.  The question was asked, "With what do you entrust God?" and I wrote immediately My health.  My wealth.  And all I love and pray for.

Since then, whenever some physical discombobulation arises, I say to myself, "I entrust to God my health, my wealth, and all I love and pray for."

Or as Fr. Larry said, "[Healing] may be a question of affirming that Jesus rules one's life."

Exactly so, I have found, and no more so than

Wednesday, February 1, 2012

Just bein' neighborly

We got together for some staff training this morning and Zach, RA of Barnabas House, asked Ashley, RA of next door neighbor Martha House, how she and the girls liked the pancake he and the guys had baked for them this morning.

Fortunately there was a photo of this masterpiece, which I expect will assume the status of legend.

Who knows what might be baked next...