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.

Day at large

Sunday last we returned from Kansas.  We'd planned the trip because there was a sustainability conference in Iowa Jerry wanted to attend and a red-headed six-month old great-grandson I was desperate to get my hands on in Kansas.

Our greatest hopes for the trip were fulfilled--I got lots of baby Adam and other family time, and Jerry came back super hyped by the people he'd met and the exciting sense that not all is doomed for the small towns we love (and the small community in which we live).  But more about that later.

My gray Dodge Charger (aka the "Dodger") ran like a top for the 2,000 mile trip.  We listened to Ambrose's Undaunted Courage on CDs as the countryside flew by, rekindling our desire to drive the Lewis and Clark route, munching on Clif bars and apples and drinking coffee.

Come Tuesday morning, Dodger was not so happy, and a trip to Gordon's Automotive in Austin revealed that a large rodent had made a nest in the engine something or other and chewed up a bunch of wiring in the process.  (I was surprised, although at the Ranch we've dealt with snakes and cats in our vehicle engines before and it seldom has a happy outcome for all concerned.)

So Wednesday Jerry brought me into the condo so I could go to choir practice and hand around waiting for the car to be fixed.  Thursday I had a doctor's appointment close to the university, so I looked up the bus routes and figured out how to get there.

Thursday mid-morning I bravely headed off for my first adventure on Capitol Metro in oh, about 35 years or so, and boarded the #5 bus headed south.

The driver was helpful, with a friendly laugh and easy way with his passengers, most of whom he seemed to know.  We rumbled along unfamiliar streets until we were close to the university and got off at Dean Keeton and Speedway. 

From there it was a half-mile walk in a gentle rain.

I got out of the doctor's office early and decided to go down to the drag to have some lunch and maybe catch the exhibit on the King James Bible at the Ransom Center.  As I ambled along, students whizzed past me on bikes and professorial types crossed my path looking intense and preoccupied.

It was an atmosphere in which I feel completely at home, having spent years of my life on campus, studying, teaching, working.  But I marveled at how free I felt as I surveyed my fellow pedestrians.  They were so intense, and I felt so serene.  The day opened before me uncharted.

Tom O!

Tom is RA of Isaiah House

Tom O! is short for Tom Oliver, who has been the Resident Assistant for Isaiah House since taking over December 1. 

There are a few other Toms around the Ranch, so it we had to add the "O" to clarify matters.

The exclamation point?  Well, that just has to be there.  If you meet him you'll see why.

We first met Tom through Special Olympics meets when he worked for the State Supported Living Center (formerly the "Austin State School"). 

Our coaches and athletes would meet Tom and his athletes and get to talking, and before long back at the Ranch we were hearing things like, "You've got to meet this guy.  He's a natural for Down Home Ranch!"

So in the course of things we did, and he is. 

Isaiah House was brand new when Tom and his guys started moving in.  It took a while for everybody to settle in together, as several trial visits needed to happen in order to fill the house the get the mix right.

Tom, Jay, Jason, Kyle, Tom H, Nick, and Travis in the woods behind Isaiah House

"I was really impressed with the guys during that process," said Tom.  "They were cool with adapting to whatever was going on with the new guys.  But I admit it's great fun now that we've all had a chance to just settle in together.

"Like the other night, well, usually I've got two guys working to get dinner ready with me in the kitchen, but this night every one of them came to hang out, just leaning over the counter or sitting at the table.  They just wanted to share their day and talk about things, and it was all so natural and fun, and I just felt like, wow, these really are just the buddies I'd hang out with no matter what.  Can't imagine anything any better!"

I asked about challenges and he laughed and said he'd realized he was like a nervous mother every time he heard a cough or someone said his stomach hurt.

"It's just not right, you know.  My  guys?  Get sick?!  No way.  Not on my watch!  But sometimes they do and I really just hate that 'cause I take it personal.  And like if I'm ready to take Travis to work at the HEB and he starts to get in the car and I see he's got a little dirt under his fingernails I just say 'Whoa, hold on!  We gotta take care of that before we pull out of here!'

"And of course they're all different.  Most get up in the morning just fine, but Jay--he's a real sleepy head and he'd usually rather sleep in.  So first what I did was turn getting up into scenes from movies.  I'd bust into his room and pretend to be some character or other and say, 'Jay!  Get up man!  There's Klingons in the kitchen and I need help getting them out of there!  And he'd laugh.

"And then I discovered the walky-talky is a great way to keep on making sure he's up and getting dressed.  He loves using it and he doesn't feel nagged.  It works great!"

I asked him what he most looked forward to in terms of his work at the Ranch, and he said, "More and more activity.  Activity is life.  Activity heals!"  Tom plans to become certified as a personal trainer in order to help Ranch staff and Ranchers increase their activity levels and "get more out of life, man!"

We're hatching a plot to build a challenge course of concentric ovals in which people can compete with one another at different levels of challenge.  It took me a while to get the idea, but Tom sketched it out with great enthusiasm.

When energy was being handed out, let's face it: Tom got several extra doses.  He's out every evening with his house and others, creating novel and exciting ways to get folks moving.  Last night it was football skills in front of Barnabas House.  Tonight it might be track. 

But one thing it won't be is boring.

Finding a way

Apparently there's a story in Newsweek's current edition concerning families with children with special needs and the mounting crisis in public funding available to help these families.  Long story short, growing numbers of kids needing help and shrinking pool of funds to help provide it.

This leaves families in a pickle.

I can relate.  After Kelly was born, pretty much every aspect of our life became related in some way or another to dealing with Kelly's Down syndrome, and despite the hopeful predictions of the "experts," we figured out early on there would never really be an end to it, but such was our love for our girl that was okay.  We just went on with life, doing the best we could.

One friend remarked when Kelly was about six weeks old, "You know, you're her primary therapist from here on out.  You'd better get used to it."

I knew it was intended as good advice, but it rankled me something awful and I snapped, "You know, I am her MOM, and I'm going to be her MOM from here on out, and yes, we'll do whatever we can for her but I don't intend to change my job title!"

Little did I dream at the time what all that would entail, even though I began thinking right away about the coming funding crises I imagined would be caused by so many people aging all at once.  Heck, I thought, in 20 years AARP is going to have 4 billion members and where's the help going to come from for my little girl?

So I put a notice in the local ARC (formerly the Association for Retarded Citizens) newsletter saying that I was looking for parents to join with us to purchase a nice suburban home we could use as a group home for our kids when they came of age.

Nobody was interested.  In fairness, most other parents with kids Kelly's age were much younger than we, had other young children, and were struggling and juggling it all with hardly any spare time to draw a breath.  Funds were scarce for mortgage payments and time was scarcer for managing such a property.

So eventually Jerry and I decided to go for it ourselves.  We'd travelled around a bit and looked into all the options.  The least practical one was the most common: take care of her as long as we lived and hope for the best after that.  We were already 42 and 46.  Even the dismal life expectancy for Down syndrome at the time pretty much ensured that she would outlive us.

So we founded Down Home Ranch.  And now all our predictions are coming true.  These days we spend hours every week talking with parents who "want to do the same thing you've done," to which our reply is usually, "No.  Trust us.   You don't."

Frankly, we created the most complicated model possible, and it has required our active involvement  every minute of the 21 years it has taken to do it.

But there are others that accomplish the same purpose in a much simpler and more affordable way.  There's the Mission Project in Kansas City, where parents formed a board of directors, incorporated, and themselves provide the oversight and management for their corps of 14 adults with intellectual disabilities, who live in apartments and over the years have come to rely more on each other than on their parents.

What we wanted, and what the Mission Project founders wanted more than anything else is control over the living circumstances of our kids. We want our values expressed and carried out.  We don't want a situation where everything is fine in the house, and then someone leaves--either a staff person or a new resident--and his or her replacement shows up and ruins everything for everybody.

It can happen, and parents have precious little recourse when it does, unless they are on the board of directors or otherwise invested in a position of influence and authority vis a vis the organization.

Are we sorry we went in such a complicated direction, winding up with a huge capital investment and responsible for running every aspect of what needs to be taken care of, which includes greenhouses, animal husbandry, forest management, and a host of other endeavors not directly related to the field of intellectual disabilities?

No, not at all.  For one thing, my husband Jerry is a true visionary.  He saw and sees ways in which the Ranch can address critical issues and seek solutions for them far beyond anything I envisioned.  It would have been a shame to limit the Ranch's development and opportunities to be a trailblazer.  The best and brightest have attempted along the way to put him in a more manageable box, yours truly included, to no avail.

And the best part is that our Ranchers play an important role in helping the Ranch carry out the ambitious and innovative projects Jerry creates.  They work in sustainable agriculture and aquaponics, they help grow their own beef, eggs, and pork, they help cook the meals and get in the hay.

The essential things we wanted for our Kelly were these: being part of a vibrant community (not being alone), growing in competency to do meaningful work (not having a purposeless life) and being constantly challenged to have new experiences and learn new things (not being bored).

We wanted a place where people with intellectual disabilities could feel completely at home, among people who loved and respected them, in that old-fashioned neighborhood where everybody knows you and where a helping hand is always there when needed.

The best part:  I can honestly say, as one of the 34 neighbors in the Village, that most of the helping hands that reach out to me over the course of a week belong to our Ranchers.  They are capable, they are caring, they know the people and the ropes and what to do in an emergency.  We celebrate together, and we squabble with each other, but in the end we work things out.

No.  Not sorry one bit.

The office...after 20 years

I retired effective December 31 last.  I finally got all my stuff out of my office and let Samantha have it last week.  She has showed remarkable patience.

I haven't had the same office for 20 years, of course. 

When we first moved to the Ranch September 9, 1991, the little single-wide mobile home we'd bought to move onto the property served as office, Horton homestead, and Down Home Ranch World Headquarters.

It only had two bedrooms--a small one and an eentsy-teensy one.  We gave Kelly the small one, which also have a 3/4 bath in it, and we crammed our king sized bed into the eentsy-teensy one.  There was about a foot's clearance on every side.

Since there was no room for office equipment, Jerry set about assembling a small room off the back door area.  It was not a thing of beauty, and I named it "The Wart," because that's what it looked like from the outside, which Jerry was not especially happy about.  That was my first office, complete with Macintosh computer and a file cabinet.

After four years the Ranch's office needs surpassed our need for a bedroom so we jettisoned the king sized bed and gave the bedroom to the Ranch.

This left us sleeping on the sofa bed in the living room.

After about three months, I rubbed my aching back one morning and said, "That's about enough of that," and let hubby know that we were moving.  Didn't know where or how but it was going to happen.  I looked in the Taylor Daily News and behold!  There was an ad for a small farmhouse to be moved for $7,000 and we do the moving. 

We looked at it and it was beautifully constructed.  We bought ten acres from the Ranch and moved the house on it, added a bedroom, and made a home.

Now the Ranch could stretch its wings and occupy the whole mobile home.  Jerry got his own office, I got mine, and Jackie, who did the books, got the living room.  Then lightning hit the barn and the bolt ran through the telephone lines and blew up all our telephone connections, including the message machines and the computers attached to them.

But Jackie had backed up, so we were still in business.

Then we built the Garden Center and I had become Program Director so I got an office there.  All my stuff came with me.  When we built the Learning Center I moved into the front office there, and all my stuff came with me.  When we built the big barn and I gave up being Program Director, I moved into the barn office, and all my stuff came with me.

So, it's a lot of stuff.  I resolved to carefully sort through every box, properly disposing of, passing on, or storing every item before packing a new box.  It was a great system.

It lasted through that first box.

Last week I faced the reality that Samantha would retire before I had time to sort through every single box that would be filled with the remains of my life at Down Home Ranch.  So everything went into a bunch of boxes, which now occupy both our home office and my music room in Benedict House.

They join 19 generations' worth of family pictures and other treasures, so I'm bracing myself for a long stroll down memory lane.  If we invite you for dinner and you come, know why those doors will remain shut.

What if...part II

Baby mine, little girl,

Precious daughter, tiny pearl,

You are mine,

through all time,

Til the ending of the world.

Years and years ago, there was a controversial play staged around the country.  It depicted the turmoil that would erupt if couples could determine while their baby was in the womb that he would be gay.

It was very disturbing, since it came out about the same time that abortion on demand was becoming an established feature of American society.  It's almost a given that couples will want to abort babies identified with Down syndrome, Trisomy 18, Fragile X, and a variety of other genetic anomalies that entail intellectual disabilty in those who have them.

But what if the baby would be entirely normal and grow up to be homosexual?  People were rattled by the implications.  Little did we realize at the time what "brave new world" awaited us down the line.

Now statistics are indicating that one in 88 babies born today will have autism.  And since most people with autism are male, this means more like one in 50 boy babies will be born with an autism spectrum disorder.

So far it seems like there won't be a simple genetic explanation for autism, but rather a whole range of possible players involved.  But still, at some point we'll probably be able to detect.  And then what?

Ninety plus percent of babies identified with Down syndrome are aborted today, and that's for a disability with an excellent reputation.  (Well, assuming the prospective parents every get to hear about it in the first place.  Usually all they hear is "looks different and has an IQ of 50.")

It's ironic and puzzling that just as we begin to rid society of--let's call it what it really is--eradicate one kind of human being, we start having an upsurge of another kind.  What does it mean, if anything?

Cantor Steve and I were talking about this during his visit a few weeks ago.   We remarked on the fact that the very advances in medical technology that enable us to seek and destroy babies with disabilities in the womb are also responsible for saving millions of lives that would previously have been lost through car accidents, battle, and other forms of mayhem and destruction.

They survive, yes, but often very damaged, functionally little different from people born with preventable disabilities.

No surprise, I have my own thoughts on that.  I believe that for far too long society has compartmentalized policies into narrow little boxes that enable us to make choices that really do not fit into a coherent whole. 

I have never heard a parent of a child with Down syndrome, or autism, or traumatic brain injury say, "I wish he had never been born," or "I wish he had died in the accident."

I know they exist, but they must be very rare, because I have known literally hundreds of parents of kids with disabilities.  And not only among the parents of cherubic happy kids with Down syndrome, but parents of kids with autism whose behavior was so challenging that they literally had to lay aside their own lives for years and years.


I once read that parents who get a prenatal diagnosis of Downs and abort are much more liable to be divorced and/or depressed a year later than parents who allow the child to be born. 

I know when pressured to get tested during my last pregnancy, at age 42, I could only think, "But that seems so inhospitable, to invade my child's sacred space like that."  Whoever was in there, I wanted to meet him or her face to face. 

And yes, she has Down syndrome.  I was less than thrilled to become the mom of a child with a huge disability.  But lying there on my chest after delivery, was a person.  I can't at this point imagine going through life without having shared it with Kelly.
And the point of all this inchoate wondering? 

Just this:  I believe there is a divine plan to bust up all those little boxes.

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?"