In the beginning...

Dr. Jerome Lejuene, discoverer of cause of Down syndrome

I discovered I was pregnant with my fourth child very early in February of 1984.  I was 42 and certainly not expecting to be expecting, but Jerry and I rolled with the punches and were soon changing our life course and making new plans.

Those plans didn't include the possibility of abortion.  The reasons for that are complex, because we were not members of any organized pro-life movement or organization.  It's more that we just loved new life, whether it came in the form of a seedling peeping up out of the ground, a litter of puppies, or...a baby.

So I rejected the amnio that would have told me our little one was busy developing an overabundance of chromosomes.  Midway through the pregnancy, I even had a mystical experience that I felt told me the baby would be a girl with Down syndrome.  But no matter. Life is life.  I figured if the universe bothered to tell me about it, it would tell me what to do about it.

In September of 1984, here came Miss Kelly Page Horton, 8 pounds, 7 ounces, bald and beautiful.  It was obvious from the moment she popped into the world.

Frankly, we were less than thrilled.  We were just getting back on our feet a few days later when we got news that she might have neo-natal leukemia.  At that point the mom and pop tiger genes in us rose up and roared and we knew we wanted this baby in no uncertain terms. 

When Kelly was five weeks old, the National Down Syndrome Congress convention came to San Antonio.  Daughter Martha and I drove down to see what we could learn. 

Talk about a revelation!  A doctor from the City of Hope in Duarte, CA, informed me that Kelly didn't have leukemia, but a "leukemoid reaction," fairly common at birth in Down syndrome.  He also said it would go away without treatment and she would bear no uncommon risk in the future.  Whew.

But we had also just received Kelly's karyotype, which showed, most curiously, four No. 21 chromosomes.  This was, needless to say, worrisome to us (and unheard of by our physicians).  If one extra chromosome could gum up the works, what would two do?

Fortunately, the very man who discovered the cause of Down syndrome was present at the conference. 

Jerome Lejuene was a French researcher, who in 1958 identified that an extra 21st chromosome causes the syndrome named after the man who first described it, John Langdon Down.

When I read that Lejuene was presenting a plenary session, I imagined he must now be very old, and I was surprised by the youthfulness and vigor of the man who stepped in front of the microphone.  In fact, at that point he was 57 years old; he had made his discovery at 34.

Unfortunately, the combination of his strong French accent, my own rather poor hearing, and the acoustics of the hall ensured that I caught very little of his message.  Still, I figured he would be interested in Kelly's karyotype, and I was interested in his take on it, so I stood in line to speak with him.

When my turn came he smiled and welcomed the paper I handed him.  He knew immediately of my concern, even before I said anything.  I will never forget his warmth and compassion as he explained that he felt certain she would develop typically as a child with Down syndrome.  I could feel that I was in the presence of someone very special.

First of all, he had come all that way to be with us, a random clutch of moms and dads with one thing in common.  It amazed me that he would do that.  I doubted that most scientists who had made a discovery of such monumental importance would bother much with the real-life consequences.

But as it turns out, Jerome Lejuene was far from typical in that respect.  In a sense, he spiritually adopted each and every child born with Down syndrome, and he cared deeply about their lives.  As pre-natal tests were developed to identify, and in most cases, eliminate the growing baby with Down syndrome. he began to speak out for their right to live.

The scientific community did not share his view, and over time he was in effect shunned, viewed as unprofessional, no doubt.

Yes, I was indeed in the presence of someone very special.  Today the Jerome Lejuene Foundation, established in his name, works on behalf of people with Down syndrome, funding medial research to work for "care and a cure." 

There is also a movement working to recognize the sainthood of Jerome Lejuene.  That he was one, there is no doubt.  I didn't identify it at the time, but it's what I felt in his presence: exceptional holiness.

He wrote:  Human genetics can be summarized in this basic creed:  In the beginning is the message, and the message is in life, and the message is life.  And if the message is a human message, then the life is a human life.

Amen.

Picture credit: Fondation Jerome Lejeune via Wikimedia (CC BY-SA 3.0).

It's your choice! (Or is it?)

"Hey, Buddy!  I'll take you to get some ice cream.  We'll go anywhere you want as long as it's Baskin-Robbins, and you can have any kind of ice cream you want as long as it's vanilla!

"It's absolutely your choice!"

This is the message of your federal government, as articulated by Mark Olson, head of LTO Ventures and the single father of an 18-year old daughter with severe autism. 

Some choice, no? 

I'm getting deja vu all over again.  Here at the Ranch we've been through this before, you see.  Here's our story.

In 2007 Down Home Ranch was up and running on a modest scale.  We had three homes open at the Ranch, each with three residents apiece, all having decided after attending Ranch Camp that this is where they wanted to live.

There we were, we band of brothers and sisters, we happy few.  Then the apple appeared in Eden, and of it we did eat.

It appeared in the form of what is known as an HCS waiver, funding "provided" by the federal government for "services" for "consumers" with what we now refer to as intellectual disabilities.  A new resident had this funding, which the family had waited for for a decade or so, and they didn't want to lose it.

In order not to lose it, they had to use it.  To figure out how to use it we convened a meeting of the young man's case manager and program director, employees of the agency administering the waiver.

In our two-hour conversation I half expected the March Hare to wander in at any moment.  Following is my mental reconstruction, what today we call the "take-away."

Program Director:    The HCS was designed to offer maximum choice to the consumer.  that's why families want it and it's so valuable.

Down Home Ranch:   That's fabulous.  Choice over what?

Program Director:   Housing, jobs, friends...every aspect of life!

Down Home Ranch:   Great!  So how does "Sam" use his HCS?

Program Director:  He will have a paid companion come and pick him up and take him on community outings.

Sam:   Can Adam [best friend and housemate] go with me?

Program Director:  No.

DHR:  Why not?

PD:   Only a non-disabled friend can accompany Sam on a community outing.  You see, the whole point is to eliminate segregation of people with disabilities.

DHR:  But he wants his best friend to go.

PD:   I'm sorry.  That's not possible.

Sam:   I don't want to go.

But, Sam had to go anyway, in order not to lose his services, which he didn't want to use.  (Perhaps they went to Baskin-Robbins...)

If the tale had ended there, it might have been better for all concerned.  But, it didn't.  We tasted of the Kool-Aid and it was sweet.  We became more involved with HCS for a very important reason.

Back up time.  We'd always envisioned the Ranch as a place for those who wanted to live there, regardless of ability to pay.  That lasted about six months into the residential program when we realized just how expensive direct care is.  The Board imposed a fee to parents on a sliding scale.  It helped. 

We were aware, however, of the financial strain it imposed on our families, as moms who had been retired for several years elected to return to employment.  The long-term picture looked a little wobbly, financially speaking.

Other Ranchers' names began to come up on the HCS waiting list.  It was determined that if we became official providers they could receive funds for supervised living and other services, so Jerry and I attended meetings offered by the Department of Aging and Disability Services (affectionately, or not, known as "DADS"). 

The day Katrina hit New Orleans Jerry and I went for the final sign-up and exam, administered to make sure we knew what we were doing.  He had decided that since I would administer the program I should take the exam.  Somehow I managed to pass it and we were in business.

One after another of our Ranchers got their waivers and soon over half were supported by the program.  All seemed well for two years. 

Then one day during a routine inspection by DADS of our houses and programs, I escorted one of the surveyors through our new, spotless Barnabas House, where each Rancher had his own large private bedroom.  The surveyor had been there for two days, and as we exited the house turned to me and said, "You know, I've heard about this place and I was very dubious about it, but now I get what you're doing.  I really get it, and it's beautiful."

Later that evening, after finalizing the exit interview with our case manager, the surveyor stopped by and said: "Mrs. Horton, I just wanted to let you know about three rules about to be implemented that might affect your ability to offer HCS services here at the Ranch."

And so began an adventure.

(To be continued)

Last night was the Gala, the second act of Down Home Ranch’s big annual fundraising weekend. 

Friday was brisk, clear, and breezy, but not too much so for a great day on the golf course.  About 130 golfers played, or played at, 18 holes on the beautiful Avery Ranch course.  All went off without a hitch, according to those who should know.

Saturday dawned cloudy and chilly, and we had all day to get ready for the Gala, held at the Bob Bullock Texas History Museum.  The Lt. Governor’s widow, Jan, graciously served as our honorary chair of the event, although she was unable to attend in person.  Still, it was very special looking around the beautiful interior, all decked out for our gala, and knowing we had her blessing for this event.

The gala followed weeks of meetings and reviews of the “run of show.”  Kristin and Andrea were ready at the payment table, and Kristin’s twin sister Krystal, their mom, and Casey held down the reception desk.

Seventy or so items were laid out for inspection with their bid sheets in the silent auction area, and the catering lines were ready to go.  Jerry fretted about my speech (but not his). 

We conferred with Andrew, the auctioneer/MC, on last minute details before getting ready to launch the serious part of the evening: matching a $100,000 challenge grant from the Still Water Foundation of Austin.

Then a most delightful cog slipped in our well-oiled machine... 

A dear friend of the Ranch surreptitiously handed us a letter outlining a complex offer to match dollar for dollar the first pledge of $10,000 made that night, and also the first pledge of $5,000.  After that he would pledge $2,500 for each pledge of either up to a personal investment of $50,000.

He wished to remain anonymous.

When it was time for the “Paddles Up” portion of the evening, Andrew played the video  prepared for the evening—a lovely short piece consisting of clips of our Ranchers at their work.  Then I stood to prep the audience for the evening’s ask.

I led off with an overview of the importance of our work program to our Ranchers.  Fees for service paid by Medicaid funds cover housing, food, and staffing, but although there is expectation imposed for some sort of day program for the “consumers” receiving services from the state, there is no money to support such a program.

That’s why so many adults with intellectual disabilities sit around coloring or sitting on the couch watching TV. 

But we’d figured from the outset that a Ranch setting was one with a skill level for everyone, and there was no reason at all that our Ranchers would be unable to contribute substantially to the work of the Ranch—from birthing calves to working in the kitchen.  That’s what we’ve always worked toward, even though frankly it would be cheaper to hire people who already know how to do these things rather than train our Ranchers to.

And now the grant from the Still Water Foundation would enable us to take a gigantic leap into the future, if all went well.

So I spoke a little about the importance of work for everyone, how it puts our Ranchers on an even footing with the rest of the world to have a job, be good at it, and earn a paycheck in the process.

I had Mike Larcher stand up, and told about his pride in scooping horse poop, even to the point of proudly proclaiming one morning to me, “Look, Judy, they made more!”  The little story got a laugh, as I knew it would, and Mike stood and beamed.

Then I mentioned our chickens, and how they were supplying the whole Ranch with eggs to consume, and eggs to sell.  “They’re laying 90 eggs a day now,” I said proudly.

Then way back in the crowd, a familiar figure stands up.  It’s King, aka the “egg man,” who cares for the chickens, even driving down nightly after supper in his golf cart to lock them up safely for the night.

“They’re not laying 90 eggs a day, Judy,” he admonished sternly.  “They’re laying 100 eggs a day!” 

The crowd laughed and applauded.

Then it was time for Paddles Up.

We knew there would be a $10,000 pledge, because we were prepared to make one.  We recently sold our condo in Austin and figured it could serve as part of our tithe, so Kelly was all set with our bid paddle to pop up when Andrew called for a $10,000 pledge.

Oops, a man at the next table, a fellow parent of a child at DHR, surprised us!  His was the $10,000 matched by our generous benefactor.  Ours was the next and last.

Then at the next table, a dear friend pledged $5,000.  Swiftly following that, pledges were taken for progressively smaller amounts (but which, of course, mounted up in higher numbers).

Our good friend who’d pledged the $5,000, possessed of a puckish sense of humor, began “matching” the pledges coming in with a quarter.  It got a laugh each time.

But then something magical happened.  The Ranchers in the audience, seeing that Andrew was accepting 25 cent pledges, realized that they, too, must be in the running, and began bringing their quarters and dollars (and even a silver dollar coin!) to Andrew.

This was nothing we could have, or ever would have, planned.

Our puckish friend was engaged in a little mischief.  But our Ranchers were acting in dead earnest to meet our goal.

I leaned to a table mate and whispered, “We’re seeing the widow’s mite in action.”  With tears in my eyes, I admit.

By the end of this glorious evening, we, and friends assembled, had met the $100,000 match dollar for dollar, with funds left over, thanks to our Ranchers. 

After that, it was party time, as we danced everything from the conga line to the hokey pokey to the great music of the Aristocrats.  Usually it’s our Ranchers who dominate the dance floor, but last night twice as many guests as usual joined in the fun.

I heaved a sigh of relief and made some lame jokes about attending someone else’s gala so I could have fun and relax, eat, and buy things at the silent auction—none of which I’d done at ours.

But that’s ok.  I witnessed the hearts and souls of our Ranchers in action, and saw clearly that they understand what we’re all trying to do together, they get it, and they want it.

And no event could deliver more than that. 

Col. Don Rettberg, Jo, and Don, Jr.

Last night we attended the Northwest Kiwanis' farewell dinner to a family that made a huge difference in the lives of so many families, including ours, in the days and years following the birth of their son or daughter with Down syndrome.

Jo and Don Rettberg, with their son Don, Jr., are moving to Ohio to be close to their daughter Sandy and other family.  They have been a fixture in our lives for 30 years now, ever since Jo visited Jerry and me at St. David's hospital the day after Kelly was born.

Jerry and I had entered some form of suspended animation following the diagnosis the night before.  We hadn't had the horrible experience from our doctors (you know, the "she'll probably never walk or talk or..." bit).  In fact our pediatrician was upbeat and helpful, assuring us that much could be done and that she knew we were "going to have a great time with this kid."

Still, I'd spent the drizzly night staring out the window into the courtyard and sleeping very little.  If I did doze off a nurse would be sure to pop in with Kelly, trying to get her to nurse.  However, Kelly refused to wake up for that or any other reason, and wouldn't open her eyes or cry for another two weeks.

Jerry?  He'd gone home and gotten very drunk.  The next morning, before the sun came up, he stood in front of the ARC of Austin, pouncing on the first employee to show up to ask, "What can I do to help my daughter?"

This day we were huddled in my hospital room with Kelly, trying to figure out what on earth the future held. 

There we'd been, perched on the edge of the almost-empty nest, ready to fly off to new adventures after an entire marriage built around the raising of my three daughters from my first marriage.  Then I discovered that I was pregnant at 42.  We cheerfully revised the family plan. 

Now we were hit with this.  New adventures, indeed!

A knock, a peek around the door, and into my room came an elegant, lovely woman with a stack of photo albums, saying she was from a parent-to-parent program called Pilot Parents.  Would we like to talk?

Oh, yes.  We definitely would like to talk.

And in that moment began a 30 year friendship that will end only when we're all dead and gone.  Jo Rettberg, and later her husband Don and son Donnie (at that time; he now firmly eschews the diminutive) had blazed a trail through the myths and realities of Down syndrome.

Her approach was simple.  She showed us Donnie's photo albums, beginning with his baby years and over all his eight years on earth.  What we saw was not the drooling dolt of mongoloid stereotype, the vision of our deepest nightmares.

We saw a bright, beautiful, happy boy, the apple of his family's eye.  We saw a family content with their lives.  In that one short visit we became aware of possibilities far beyond the realm of anything we'd imagined. 

Later Don would enlist Jerry's help to build a home for the Infant Parent Training Program.  Jerry would enlist Don's help in reaching out to others in support of building Down Home Ranch.

What the Rettbergs mostly helped us do was to see undreamed-of possibilities that took the place of the dreams that faded after our babies were born with an extra chromosome. 

And in no small ways, their faith helped us find ours.  When we were re-married in the Catholic church years later, the Rettbergs were there as witnesses.

Jo and Don took quite a bit of ribbing last night about their relocation to an area that has been blanketed under snow for the past several months.  Who retires to Ohio, after all?  But there were a lot of tears shed by tall, strong men (many of them retired military) as they choked out their funny stories and presented their farewell cards and gifts.

Because this is one family whose absence will be hugely felt.  Their lives have touched literally thousands in the Austin area, as they showed so many of us how to live with Down syndrome, and we have shown so many others through the years.

We will be ever grateful for their friendship. 

Bon voyage, dear friends. 

God's economy

There was a death yesterday at the Ranch, a small one.

The baby chicken Ashley was caring for so lovingly, who seemed to be doing so well, just (as my grandmother would have said) up and died.

Naturally most of the Ranchers had invested heavily in little Prancer's struggle to live, stopping by Ashley's office multiple times a day to ask about him.  There is widespread sadness over his demise.

Most people would probably shrug and move on down the pike.  In Mother Nature's economy, (which Prancer's mother shares, having ditched him out of the nest as soon as she detected something amiss) that makes sense.  Cut your losses, concentrate on those remaining.

But scripture says that not one sparrow will fall to the ground outside our Father's care.

As a young teenager, I bugged my grandmother about the parable of the lost sheep.  "But what about the other 99 sheep?" I would insist.  "He goes off and leaves them to find the one?  That doesn't make any sense!  The wolves will get five or six of them when he could just lose the one."

"That's what the Bible says," she would state firmly.  "It's not up to me to make sense of it."

Now far past my grandmother's age when we had this conversation, I think I understand.  God has a different economy altogether, one in which miracles occur.  How it works I could not begin to say.  It's what the Bible says.  It's not up to me to make sense of it. 

Sadly, Mother Nature's economy prevails in this old world, which is why babies with Down syndrome and other disabilities are generally aborted once the anomaly disqualifies them from joining our ranks is identified. 

Jerome Lejeune, the French scientist who discovered the third chromosome that causes Down syndrome, parted ways with his colleagues once abortion became the preferred "treatment" for it.  He was ostracized to a significant degree for believing that every life has value, and that people with Down syndrome are no exception.

"What do I become," he asked, "if I do not work to protect them?"  He understood the economy of God.

 So yes, little Prancer is gone, but he not fallen outside our Father's care. 

Moving forward

Somebody please tell me where October and November went? 

I checked out on 10/19 and got over the anesthetic about 36 hours ago, it seems.  The world went on, and apparently I had conversations I recall nothing of, and am delighted to hear I have agreed to a date at the opera in Houston next year!

So, since coming home it's just been hanging around getting over the Big Slice...  My Halloween surprise this year, and it looks it.

Sunday Jerry and I ventured out to church, and I sat in the pew with Jerry and listened to our magnificent choir and our terrific preacher. Only missed one Sunday in the whole ordeal!  Got seasick in the car for the first time but it quickly passed.  Later in the day my friend Maria came over and took me to get my shingles vaccination, having convinced me that among my other woes, I really don't need that one.

Then today Kyle came over and we caught up on our life adventures, went out for a bit at Cover3 in the 65 degree weather with the warm sunshine on my shoulder.  Oy, I feel a country song coming on...

Afterward I had Kyle take me to get a buzz cut on the hair.  I'll see Kelly tomorrow, or--more to the point, Kelly will see me tomorrow--so I promptly took a picture of myself and put it on Facebook, hoping to lessen the shock of seeing me for the first time.  We've broached the "c" word with Kelly now, and she knows I'm going to have chemo and will lose my hair.  Jerry feels I went a bit extreme, but I feel it will lessen the shock when it starts falling out for serious.

We've encouraged Kelly to go ahead and have Thanksgiving with promised-one Sterling and his family this year.  Sterling's folks moved to Galveston several years ago just in time for Ike to wipe their home and his step-dad's job off the map.  Since then they've been regrouping and finally have built their dream house in Elgin, after a long stretch in the RV.  It's a very exciting Thanksgiving for them, with all the grandbabies and family. 

Sterling and his family are a vital part of Kelly's network of support, and again, we are actively taking advantage of this episode in our lives to strengthen it.  Kelly has known the family for as long as she can remember.  She  loves them and they love her.  They are our older daughters' ages and will be here when we are gone.

I can hardly wait to start hugging all my buddies at the Ranch.  We've had a virus going around and I've stayed away as long as I can to avoid it.  But now...it's time. 

Wondering, conclusion

Jamaica 4

Sunday, September 4 2012

I am awake at 4:00 and shower in the upstairs bathroom.  We don't need to be up until 6:30 today and we are aware of this fact, but still people begin rising in anticipation of our last day in Kingston around 5:00.

The plan for the day is to clean up the large chapel in anticipation of Mass, so the guys will need to temporarily clear out their cots and mattresses and help set up chairs.

We will not go to Mass here.  We will return to Bethlehem and the Lord's Place to help the residents get ready for Mass in the huge chapel on the grounds there.  Then we will be taken with other first time volunteers to Sacred Heart, where the Brothers live, for lunch.  

I pack everything up and strip my cot, as Jerry and I have made a reservation at a hotel, and will leave after lunch.  We have Morning Prayer, and then hang around the Holy Innocents compound until time to leave.  We enjoy the garden there for the first time, and marvel at the tropical vegetation.

We are assigned again to The Lord's Place.  By now some of the residents are familiar with us, and they greet us with enthusiasm.  The place has been transformed since the day before and erupted into a joyful frenzy.

My little girls with Downs, who have stolen my heart, are bustling about helping less able residents pull on clothing and find shoes.  The fearsome aunties are not to be seen, and the auntie on duty is patient and careful.

There are several Brothers on duty this morning, and I am thrilled to see them hugging and joshing with the residents, who clearly love them.

Still, it's a mess.  The residents do not own any clothing, and must take pot luck.  It's clear that some are vying for a particular dress or blouse to wear this week.

A wiry little resident named Bethany, black as ebony and clearly possessed of impressive organizational skills, bustles about issuing orders, which likely as not are ignored.  

A cabinet is opened.  There are stacks of new skirts that look like they came from the wardrobe of the Ballet Folclorico de Mexico.  They are sateen, flared, with three tiers of wide, colorful stripes.  In another cabinet are new pink golf shirts obviously donated following a charity golf tournament in the States, as they bear the logo of a church.  The combination is bizarre, to say the least, but becomes the favored fashion of the morning.

The little Downs girls dress identically and braid each other's hair.  (They are two of the few residents allowed to keep their hair.)  

The auntie on duty works with Amanda, from our group, and more seasoned volunteer from another.  Bras are issued for the day; the residents are thrilled and happily pull up their shirts to show me.

Some women are rubbed down with lotion before dressing, while others are powdered.  Then the hunt for shoes that fit, or that at least can be tolerated for the duration of Mass, are found and issued.

A final spritz of perfume and we are off to the races.  Bethany takes me in hand and shows me the way to the chapel.

We arrive early and are told to sit up close to the front.  Decker is seated  on the first row, with Samuel in his arms.  Samuel is the size of a two-year old, but has Downs and I estimate his age at about four.  He clings expertly to Decker and surveys everything and everybody with acute attention.

The pews are jam-packed into the Chapel, and every pew is full.  There is scarcely enough room to stand up, the pew in front of us is so close to us, but we manage.

An elderly Jamaican man is just finishing leading the Rosary, a hymn is announced, and the joyful procession begins.  There are 40 Brothers in the choir and 20 more make up the instrumental ensemble, with guitars, drums, bass, keyboard, and a riot of rhythm instruments.

At last Mass is ready to begin.  The Brothers announce the song and the chapel erupts with joyful song.  Everybody begins to sway and clap and sing.  The bamboo cross passes by and little Samuel, in Decker's arms, waves his little arms in perfect time to the beat.

And so it goes for two solid hours.  I am moved, I am relieved, I am restored.

I am reminded of my favorite scripture:  "God will restore the years the locusts ate."    Like a kaleidoscope that takes a quarter turn, the whole picture of my experience in Jamaica has shifted.  

Where there was despair, there was now hope, and Jerry and I agreethat we will find ways to help the Brothers in their work.

Thanks be to God.

Wondering Part I

"Ideas lead to idols.  Only wonder leads to knowing."
                                                        St. Gregory of Nyssa

Today is the Memorial of the Guardian Angels.

In Jamaica we met a whole host of them.  True to our idea of angels, they are clad all in white.  The resemblance stops there, however, as they tend to be small in stature, dark in complexion, and speak in strong accents that can be a challenge to my aging ears.

Plus they wear flip-flops.

(But I correct myself: they do sing like angels!)

Following is the first of three blogs concerning our trip to Jamaica to visit the Missionaries of the Poor and their works in Kingston.  I cannot stress this enough: if you read this one, you must read the next two.

Because I don't know what they will say any more than you do at this point.

I wonder.  With God's assistance, I hope to know.

                                                            * * *

It is Friday, September 29.  We rise at the bell, shower in cold water in the semi-dark, and go to Morning Prayer and Mass.  Six Brothers are there, along with the five sisters of Holy Innocents, and 19 of us from Down Home Ranch and Mobile Loaves and Fishes.  We crowd the tiny chapel.

The Brothers play and sing praise and worship music, much of it composed by the founder Fr. Ho Lung.  It is joyful and fun to sing. Fr. Brian, from India, preaches an inspiring homily.

After a simple breakfast we are taken to a compound consisting of The Lord's Place, which houses people with intellectual disabilities, mental illness, and HIV, and Bethlehem, which is a bare-bones nursery and children's home for babies and children with massive physical deformities and complex care needs.

All the care and treatment takes place in a walled compound fenced like a maximum security prison, as is every place we see in Kingston.  The young men in our group would love to stroll the streets but the Brothers are most insistent that they not, and vigilant to make sure they don't.  They come to understand both the danger of daily life in this area of Kingston and the scandal it would bring should a foreign visitor be harmed while visiting MOP.

After a brief orientation, we are turned loose to do the best we can.  Jerry and I are assigned to The Lord's Place.  There ae two pavilions surrounded by dormitories, with steel barrier fences that can close off sections at a time.  Like a prison.

The dorms house 12-24 in bunk beds.  Although some of us are assigned to mop and clean and disinfect, and the facilities appear clean, there is the pervasive smell of urine which is so difficult to eradicate.

The residents are for the most part friendly.  Some are glad to see us, others seem disconnected and/or bored with yet another group of American do-gooders trouping through their midst.

I had brought crayons, markers, coloring books, and other small items with me, but we were asked not to introduce anything they didn't normally have because it leads to stealing and fighting and general unrest. So I hadn't brought them with me to the compound.

Therefore, as my mom would have put it, the only monkey on a string I have to entertain people with was me. I do the best I can to converse, struggling with less than optimal hearing, the Jamaican accent, and the scarcity of teeth of my conversation partners. I continue to make the rounds until my attention is captivated by a couple of young girls with Down syndrome.

They are about 12 and 14 as best I can tell.  Though non-verbal, they are plenty capable, and are caring for a baby, a healthy boy that inexplicably lives in the compound.  They feed him and pass him back and forth, and play with him until someone comes to take him away.  Then they link hands and wander off.

I spend time talking with Joyce, who is psychotic but possessed of a keen intellect I did not expect to find.  She is neatly dressed and aristocratic in bearing.  She informs me that it was she who created the universe and wrote the New Testament, and that she is a former ambassador to The Netherlands, and was born white but was poisoned and turned black by a jealous cousin.  She has many children, but has not seen them for many years.

After lunch I am asked to wash the residents' faces and hands with a basin of cold water and a wash cloth.  I ask permission first, wash a face, and then return to the spigot to rinse the cloth and get fresh water.  After a few passes, one of the three Jamaican staff, called "aunties," becomes exasperated with my slowness and and tells me brusquely just to use the same water and get the job done. 

I cannot do that.  I am indoctrinated and trained to a fault in hygiene protocols, and I say I don't mind the extra time and work to do it my way.  She reassigns me to distribute water, using two cups for roughly 30 people sitting around the Pavilion. 

True to form, I carefully wash each cup and refill it before offering it to the next person.  Auntie rolls her eyes and shakes her head and scowls, but I persist until everyone who wants water has water.

We have Noon Prayer after our lunch, and return for a few more hours of volunteering. Then we return to Holy Innocents.

The MLF contingent is eager to know what I think of our experience that morning. 

I cannot lie: Beyond the Brothers' faultless compassion and kindness and hard work on behalf of these people, the place is where the United States was in terms of care for children and adults with disabilities and mental illness 40 years ago when the federal government took over many states--including Texas'--mental health and mental retardation facilities.

Residents are warehoused and deprived of almost any semblance of human dignity.  They are allowed to own nothing, not even their clothing.  There is scant attempt to dress them in clothing that fits or even has zippers that zip or buttons.   They are shoeless.

Their heads are shaved to make their care easier on their keepers.  They are hosed down at shower time in cold water.  Except for foreign visitors, there is nothing at all to break the monotony of their days that I can see beyond the bowls of food handed them at meal times wherever they happen to be.

No music, no pictures on the walls, no books to read, no television to watch, no possessions, nothing that allows them to say, "Look world.  I am me."  Absolutely nothing to break the monotony beyond a bunch of Yankees wandering around trying to figure out what to do, asking the same questions the previous contingent had undoubtedly asked.

Yes, it's Jamaica.  Yes, it's poor.  Yes, the Brothers live in identical circumstances, eat the same food, bathe in cold water, dress all alike.

But the Brothers have chosen this life.

My soul is troubled at prayer time.  I think of our cast of characters at the Ranch, whom I know so well, and whom I love with all my heart and soul.  I try to imagine them here and my heart breaks and I vow I will never, never, never again become exasperated with their endless plans to become pop and country singers, their refusal to try broccoli, and their fanaticism over being either a Longhorn or an Aggie.  I would give anything for one of their exuberant hugs, and a halting description of their day.

I think of the little mute girls with Downs, who never learned to speak, who are dressed in rags that don't fit, expertly caring for a baby who will someday disappear from their lives, and the psychotic, the abandoned, and those dying of AIDs among whom they live.

And afterwards, I go into the bathroom, and cry. 

Changes in latitudes, changes in attitudes

Friday, September 28, 2012 6:45 PM Jamaica Time

I am sitting at a table in a makeshift dining room/men's dorm in what in what usually serves as the chapel for Holy Innocents Maternity Home, run by the Missionaries of the Poor (MOP) in Kingston, Jamaica. I won't be able to post this blog until my return on Monday, because as you might suspect, the Missionaries of the Poor don't indulge in any more technology than absolutely necessary.

Innocent, a six-month old baby taken in by the sisters at birth after his mother abandoned him after trying multiple times to abort him, is indignantly wailing after being parked in his crib for a brief moment as Sister Joanna prepares his bath.

We are in Kingston with the Austin staff of Mobile Loaves and Fishes, a food truck ministry to the homeless. There are 19 of us total. We are there because Fr. Charles of MOP, and Alan Graham, who began Mobile Loaves and Fishes in the mid 10s, visited the Ranch last summer and invited us along. Among those served by MOP are people with intellectual disabilities, the elderly, babies with severe physical handicaps, people with mental illness, AIDS, TB, and leprosy. Tomorrow we are to meet and work a little with some of them.

The Brothers help us alight from our transportation to Holy Innocents

We were picked up at the airport by a young MOP brother in what we came to call “the cage.” Jerry searched for a respectful term and settled on “lorry.” We knew that lorry was an English word for a vehicle that transported things, although we were fuzzy on the details, but it sounded better than “stock trailer,” which I’m pretty sure is what it started out as.

We stood in the cage holding on for dear life as Brother drove speedily through the outskirts of Kingston. We couldn’t see much, and anyway, it took all our concentration and effort to remain upright. We did notice that every structure was surrounded by high fences with razor wire looped around the top.

We arrived at Holy Innocents and were shown our quarters—women upstairs and men in the chapel. The women’s dorm is filled with metal bunk-beds of WW II vintage. I know this for a fact because I scrounged identical ones for Ranch Camp some 16 years ago from an Army surplus store.

Everywhere fans are stirring the air, and not gently. Industrial fans blow like a Texas nor’easter barreling in, floor fans swivel to and fro, and exhaust fans hum merrily along. I can hear nothing of what Sister Joanna is telling us in our orientation and will have to trust that other volunteers will clue me in.

In addition to the fans, trucks are roaring loudly past, pouring diesel exhaust through the concrete louvers that allow the breeze to sweep through the enormous concrete structure.

We are served dinner, a simple meal of flavored rice with chicken bones and a few stray bits of meat. We have water and instant coffee, and bananas and peanut butter, too. (They know Americans.)

Ladies Dorm at Holy Innocents

The women divvied up the three bathrooms for shower times that evening, sufficient for our numbers because the cold water shooting from an open pipe did not encourage lingering.

I go to bed wondering if I will sleep even an hour. After ten the neighborhood dogs begin to bark in earnest, competing with the trucks that continue to roar by. Rain begins to fall on the uninsulated metal roof, and of course the fans drone on. Finally, in exhaustion, I incorporate everything into my dream life and—to my own amazement—get a pretty good few hours of sleep.

Happy Birthday!

Jessica (in Yankees shirt) with mom Janis

Today is granddaughter #1 Jessica's birthday.  For a short few months she gets to be the same age as Aunt Kelly: 27.

Caitlin, #2, came along a few months past Jess, and Noah, #3 a few years after Caitie.

Though I have no regrets about becoming Kelly's mom at the age of 42, I must admit that having babies and grandbabies at the same time compromised my grandmothering role.

First of all, I was as busy and preoccupied on the mothering front as my daughters were.  I had to hand Kelly off in order to hold and ooh and ah over Jess or Caitie.  By the time Noah came Kelly would burst into tears if I even reached for him.  Like I say, it cramped my style!

But her nieces and nephews have played the role of cousins in Kelly's life, even though she very much sees herself as Aunt Kelly to them.  In the very early years they were a natural playgroup, but as they got older and Kelly's handicap became obvious, each of the grandkids, in their own time and way, came to an understanding and acceptance.

By the age of three, Jessica had already taken on a (small) playground bully to defend her Aunt Kelly.  "Don't you make fun of my Aunt Kelly!" she yelled, fists at the ready and flying in his face.

And now comes the new generation, in the form of Mr. Happy Guy, the ginger man himself, Adam, son of Caitie and Aaron, and absolute possessor of Nana's heart these days.

I was privileged to spend a few days with Adam, now six months, and with Caitie and the rest of the family last week in Kansas.  Caitie and I got to talking about this and that, and somehow got onto the topic of family planning.

"Well," I said.  "Certainly means were available to plan pregnancies back when I first got married, but in fact only one of my four was planned.  And it was no big deal, really, because I always expected to have kids, and I expected to have them early.  It was a given."

I think it all sounded a bit willy-nilly to my Caitlin, but it wasn't, really.  In our minds there was a place for each, waiting in readiness for their arrival, but recognizable only after the fact.  When each did arrive I exclaimed in wonder, "Oh!  I didn't know it was going to be you!" as if I'd known them all my life.

Which in some sense, I believe I had. 

So Happy Birthday, Jessica!  You were meant to be here with your wonderful parents and we thank God and pray blessings upon you every day.

A man with a purpose

Travis loves caring for Pete

While obsessively reading everything I could get my hands on regarding Down syndrome when Kelly was still a toddler, I came across an intriguing (and heartbreaking) paper from a professional journal entitled:  The Curious Case of an Overfunctioning Mongoloid.

At that point the article was about 30 years old, but the title sounded like something out of the previous century, as well it could have been.

It concerned an elderly couple in a small town somewhere in the Midwest, who as they aged were increasingly cared for by their son with Down syndrome.  Although they were accustomed to caring for him, as their ability to care for themselves, each other, and their home decreased, their son's increased.

First he took over walking to the small downtown area to shop for food and supplies.  Then he began cooking simple meals.  It took him a while to get the hang of the old-fashioned reel mower used to cut the grass but before long he mastered that, too, and eventually came to handle everything from the laundry to the banking to helping his parents with their personal care needs.

Finally, the old folks just gave out.  After their deaths, the son was taken into custody by the state authorities, administered IQ tests, declared to be mentally defective, and sent to live out his days in a state institution for the feeble-minded.

I hope it wasn't so, but there he probably came to know first hand what the Eden Alternative movement refers to as the three blights of aging and disability: loneliness, purposelessness, and boredom.

What a tragedy!  I quote at this point from a comment received regarding the recent post What if?

"I also could say "What If"?  My OBYGYN Doctor almost mandated me to have an amniocentesis test when I was pregnant with my sweet David, at 38 years old.

"What if I'd taken the test and made the WRONG decision to not complete the pregnancy?  I would have missed out on his happy personality, and he has taught me so much more than I could ever teach him about acceptance and forgiveness.

"He holds no grudges, forgives instantly, and is the joy of my life.  He will be my companion as I get older, and maybe even help take care of me some day!  ...

"I accepted my Down syndrome son and after being told of his disability, it's been upwards ever since.  My friend said we should call it Up Syndrome instead!" 

Some may chafe at the implication that David is not being given the chance to create his own life away from the family.  I believe that he is lucky to have a mom who trusts that he can give as well as take in this life. 

I doubt that David feels lonely, bored, or without purpose.

David has a purpose in life.  As the old saying goes, "No man with a friend lacks a purpose in life, " and David is a valued member of his family and their circle of friends. He has inspired admiration, love, and trust in those who know him, and who count on him in ways that matter.

And how many people do you know who "have a happy personality, hold no grudges and forgive instantly?"

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.

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

A Smile as Big as the Moon...and a few other things

Tonight ABC debuts its movie A Smile as Big as the Moon.  At least one of the actors in it has Down syndrome, Peter ten Brink.  Maybe some of the others portraying students in a special ed class do also, but I'm not sure.

I haven't seen it, but I'm hopeful, partly for part of the dialogue quoted by a friend of mine:

“I’ve worked with special needs kids for far too long to romanticize their accomplishments. There are no simple solutions for any of them. These are basically good kids who’ve been dealt a bad hand. They live their lives on the margins. Their classroom is a metaphor for their existence. It’s out of the way at the far end of the basement. It’s like a cell block with bad air, bad light, no windows to the outside world. And outside the classroom, not much is asked of them nor is much expected. Can they try your patience? Yes, they can. And do they sometimes break your heart? Yes sir, they certainly do. But there are times – remarkable moments…when more is asked of them and more is expected of them. And they rise to the occasion, gratefully, gladly, just to remind you of the remarkable power of the human spirit."

The Regent School's fifth-graders came out to volunteer (for the third time this year) on Friday.  As I gave them my talk about the Ranch I told them, "Regent School started the same time Down Home Ranch started, and for the same reasons. 

Your parents and Jerry and I and our Ranchers' parents. we all want the same thing for our kids--not a good place, not even an excellent place, but an AMAZING place that makes sure you get a chance to live the best, most important, and most fulfilling life you can live."

I'm heartened by the dialog quoted above that this won't be another sappy feel-good movie that romanticizes Down syndrome and others with disabilities.  Our kids are members of the human race, with all the attendant joys, anxieties, fulfillments, and periods of desperation.  Like us, they are sometimes pleasant, and sometimes less so.  One minute we are ready to fall down in adoration of them and in the next to throw up our hands in utter exasperation.

Most of us parents, though, wind up sharing the sentiments of the Garth Brooks' song The Dance...

"Our lives are better left to chance; I could have missed the pain,
                but I'd have had to miss the dance."

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

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.

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

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.