Monday, August 22, 2011

Home at last

Neighbors at last, Sterling & Jerry walk over to Isaiah House
It's finally happening.  The guys are spending their first night in Isaiah House!

Right now it looks a bit like a scene out of a reality show about hoarders.  Joseph House is cleaned out of stuff, but Isaiah has a ways to go to make the house a home. 
Travis' dad Tony works on the TV

Sterling's room is pretty well done, and Travis' mom and dad came up yesterday to install him in his, but John and Kyle's, well...let's just say they'll need some help establishing priorities.

But Sterling is so glad to have his house buddies, he came over and grabbed us after dinner to come and see.

These guys have been so patient, for so long, and they are very happy to be in the Village.

Meanwhile, at Joseph House, four guys new to the Ranch will be settling in, and yet another dream will come true at Down Home Ranch.

Friday, August 19, 2011

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.

Monday, August 15, 2011

Just friends

Michael two Gamm boys at Cabela's
The Gamm family has long been good friends and neighbors of Down Home Ranch.  Both Jeff and Kristie volunteer a lot, and even work occasionally as weekend house managers, and as the kids grow older each so far has found a niche volunteering or working for Ranch Camp.

But best of all, the Gamms love our Ranchers, and take the time to get to know them, and then invite them over for the weekend every now and then.

What's the big deal on that?  Mainly that people with disabilities don't get to interact much with anybody who isn't related or paid to do it.  It's a special treat indeed when folks just have you over because they like you and want to hang out with you for a while.

Saturday Michael was invited over to the Gamms to spend the day target shooting, followed by a trip to Cabela's.  All week leading up to the weekend he talked about things they planned to do, and today he hit the barn jabbering away and showing off a small (but visible!) bump on his forehead from a recoil.  I had to shoo him off to get to work!
Michael's a happy camper with buddy Jeff

Here are Jeff's comments on the day:

The day started off with Biscuits and sausage Gravy.  Then headed to the back where Michael proceeded to consistently hit the Metal Ram with the AR15 pistol.  He really liked that gun as I can convert it to a 22 long rifle and makes it fun to shoot.  Then it was off to the next best place this side of heaven, Cabela's where he and the boys took out more targets in the shooting gallery and enjoyed the usual Cabela's fun of aquarium, taxidermy and lots of guns n stuff.  It was a blast to be with my friend while the air was filled with the smell of powder and the sound of bullets hitting the steel ram target.

Aiming the AR15
Really, truly, we are blessed.

Friday, August 12, 2011

Is it too hot, am I too old, or both?

Flies are big at Down Home Ranch
Probably both.

As mentioned on Monday, I'm helping out with the Barn Team this week.

I woke up very early this morning, and came down to feed the horses at 7:30.  Mr. Lobo was hard at work in the Community Gardens.  He shows up for work at 6:30, to get as many hours in during the cool of the morning as he can.  The tomato bushes look frightful, but they've put out a thousand blooms, so looks like we'll be back in the tomato business again soon.  True love and homegrown tomatoes!  Only two things that money can't buy, as the song goes.
Mr. Lobo showing off his work
(I wonder what it means that the three 70-year olds (me, Jerry, and Mr. Lobo) are up and working before the young pups have cracked an eyelid?)

The heat rages unabated.  In the barn, we do physical work until about 10:00 and then we've been cleaning tack in the Learning Center, but today Brian had 500 baby poinsettias ("points" for short) to plant.

The farriar came this morning and trimmed up the hooves of our three donkeys, six mini-horses, and three standards.  It took quite a while, but all we really needed to do was feed, water, hay, and transfer critters from one enclosure to the next.  Travis is really good at that!

Oh, I just remembered! Peggy Sue needs feeding and I forgot her.  Oh dear.  Back out I go in the heat.
Peggy Sue is not amused at being forgotten
At 9:30 we reported to the warehouse to fill pots, plant pots, water pots and move pots, and I worked til almost 11:00 but then had to quit or face a sinking spell.  It's right warmish in there, even with the fan.

(Speaking of sinking spells, we had a staff member a few years ago who came rushing into the main office wanting to call 911.  They asked her why and she said, "So-and-so says she's having a sinking spell!")

Sounded pretty bad to a Yankee, I guess.  We explained.

A strawberry smoothie and some peanuts fixed me up.  I returned to the working end of the Ranch and Travis and I transferred Magic and Pete (Travis' favorite equine) to the pasture.  I do believe I'll go rob the hens of a few eggs after I feed Peggy Sue and head home and put my feet up for a spell.

And that's Friday, August 12, 2011, at Down Home Ranch.

Thursday, August 11, 2011

Slowing down a bit

Michael cleaning a bridle
 Ranch Camp ended a week ago last Sunday, and the Ranch went from high speed to August speed, which is considerably calmer.

True, we had the National Down Syndrome Congress annual convention to go to, but that only involved about half of us, and this week we've geared way down.

Except for poinsettia planting, which starts tomorrow!  Several thousand of the little wonders need to go into their pots, get watered down, and tucked away to grow and become big, gorgeous, velvety Christmas plants.

Right after the NDSC convention, Marci and sister Lori hopped on a plane for the Virgin Islands for a few weeks kicking back and recovering from Ranch Camp.  This created holes in staffing so I volunteered to take the barn team for a few weeks.

Travis works cleaning Sally's cart
It's been fun!  We cleaned Sally's cart on Monday, and Tuesday undertook cleaning all the leather tack in the tack room.

Alan concentrates on a dirty spot
Hoo boy...we have a lot of leather tack in the tack room.  We're working in the Learning Center to avoid the 100+ temperatures, and the team is diligent in its work.  We're memorizing names of the many different pieces and trying to keep them grouped so we can put the puzzles back together.

Rebekah's hard work shows!
Today we learned "brightwork," which are the brass, silver and copper decorations on some of the bridles.  Who even knew they were there?!  After an hour's work they shine like a star.

Tomorrow we will take a break and work on poinsettia planting, then back to the leatherworks on Monday.

"I miss the barn," Travis said.  "And. this is really hard!"

'Tis, for sure.

Monday, August 8, 2011

Back in the saddle, or at least the barn

Michael, Travis, and Alan working on Sally's buggy
Everybody got home from the NDSC Convention yesterday before 5:00, and I'm sure the house bedrooms were filled last evening with Ranchers chatting with themselves, putting their rooms in order (or their version thereof), and planning their week.

Jerry and I collapsed on the couch after supper and watched a favorite movie, This House of Brede.  He worked out this morning but I didn't, fairly sure my stint in the barn this morning would serve the same purpose.

I was right.  We feed the horses at 8:00 because it keeps them happy, and by the time I got through I was wringing wet.  At 9:00 I went up and got my crew--Travis, Michael, and Alan--and set them to work.  Travis cleaned up manure, Alan swept the barn and cleaned the stalls, and Michael helped me rearrange and clean up the hay area.  We extracted a 100 foot industrial extension cord and found the fence tool.  I was happy!

Sally's cart needed a good cleaning, so we got a start on that.  I have to buy a wire brush, leather polish, metal cleaner, and wood wax to get it in shape.  Tomorrow we'll start giving all the tack a good cleaning.

It's been a while since I worked with a team, and I'm more impressed than ever by how well our guys do, caring for this place we all love.

Saturday, August 6, 2011

No problem, really!

Here we are in San Antonio at the National Down Syndrome Congress Annual Convention being held at the J.W. Marriott Hill Country Resort

Jerry and I came down Wednesday, the staff arrived Thursday, we all went to pre-conference sessions yesterday, and Gena and Travis brought the Ranchers down yesterday afternoon in the bus.

What a change from last year, when we met at Disney World and were dropped off in the pitch dark in a veritable maze of unconnected buildings, amongst which were scattered our rooms.  In retrospect, we feel like we spent most of the conference waiting for a bus, sitting on a bus, or walking two miles from the bus to where we needed to go.!  All connected, all gorgeous, all accommodating, with a water park on site.  There's no crowding, smashed together feeling (except for last night at the Just Dance function, and that's how it was supposed to be).

And whenever I thank someone the heavens open, rays of sunshine beam down, and I hear these beautiful words, "It's my pleasure!"

Jerry and I noticed it right away, the glorious absence of the obnoxious phrase that has replaced "You're welcome," namely--NO PROBLEM, DUDE!"

OK, so you don't really hear the "dude" part, but you hear it in your head, or at least I do.  Jars me every time.  I thank you for something you did for me, even if it was your job, and you dismiss it with "no problem."  Like I thought it was a problem to begin with, which I didn't.

Guess I've turned into an old grammar crank but looks like Mr. J. W. Marriott is one, too, because I have not heard one "no problem" from any of the staff since I got here.

Jerry got to play the Oaks course, from which he returned happy if a bit crispy from the 105 high on Thursday. 

Casey, Lori, Calvin and I attended Dr. Chicoine and Dr. McGuire's workshop on health and aging in adults with Down syndrome yesterday.  We came away inspired, with a thousand ideas for new ways to help our Ranchers be successful in their lives while reducing situations that cause them needless stress and anxiety.  Most all the news from this workshop was good, except for one, namely that it really does seem that people with Down syndrome age more quickly than the normal population, that aging accellerates once they hit their 30s.

Later, as Casey and I waited out in front of the hotel for the bus to arrive with our gang we got to talking about the Ranchers, and how we miss them when we're away from them.  I ventured that I couldn't really imagine Casey functioning as a case manager with any other group of people.  She laughed and said that when she'd gone to "case manager" school all the case managers there wanted to be teachers and couldn't understand why she, a teacher, wanted to become a case manager.

"Of course the truth is, I only wanted to be a case manager for Down Home Ranch in the first place," she said.

I had asked Dr. McGuire, on behalf of us older parents who worry about the effect of our death on our kids with Down syndrome, if he thought intentionally making a video of all our family now while we're still functional and happy was a good idea, something that could be of comfort when we were gone.  Casey and I were talking about that, too, as we waited for the bus.

"The truth is," she said, "My hope is to hang in with this bunch as we all age together and then we'll all go together.  That's what I want."

Well, as my grandmother used to say, "Man proposes and God disposes."  Our little community will play out in ways we can't imagine. 

Meanwhile, we'll just dance.