Life abundant, even with cancer

Martha took me in this morning. Jerry felt he needed to be there but I forced him to go play golf, wrenching his arm almost out of its socket.  I convinced him by reminding him how I cherish one on one time with my daughters, and if he came Martha would have to leave because Spa Chemo at Texas Oncology only allows one visitor at a time. 

Martha has amazing empathy: when the Benadryl kicked in through my IV line she immediately fell asleep, letting me know it was time for my nap! I was able to report to Jerry that Martha also proved to be a good urban food forager for lunch. So we did just fine.

Dr. Smith said I am in great shape but it's clear I'm one of those who will need a white cell booster shot after each chemo. She says it's common and nothing to worry about, just means I need to go back tomorrow for the injection, which has its own side effects. Personally I am so much stronger than when I went in for chemo I can't help but hope that the effects from the chemo will be much less than they were with the first one. 

But truth: you can't predict. Overall my arc was: Chemo, one great day (thank you steroids), two miserable days, one tired day (but able to go to see Lincoln and enjoy it), and then steadily feeling better and actually good at least part of each subsequent day. I got two white cell injections and had one bum day but otherwise the main symptom is fatigue, which sometimes comes on suddenly, maybe even right after I get up and have my coffee. Then I have to rest. Unpredictable.

That said, walks with Jenny have been a terrific boost, because she has had to go out at least six times a day and each outing is 10-15 minutes at a minimum at a fast clip. We have covered as much as 1.5 miles on a single outing, so it's a great way to build stamina. And oddly, I have yet to have to wave down a ride back to Benedict House during a walk with Jenny! Go figure.

Now I am going to embarrass Jerry.

I'm not surprised, as this is not the first medical crisis we have been through together, but I am amazed anew by his understanding, tenderness, concern and care for me. As I tap away, he is preparing a dinner of blackened salmon, wedge salad, Brussels sprouts, and gnocchi! He is my best buddy in the journey of life. 

We have settled into a wonderfully amiable stage of our relationship that endures through thick and thin, and we've had plenty of that along the way. We laugh often and loudly, we argue heatedly and unfairly, we get excited reading the same book and loving it.

John Paul II wrote beautifully, truthfully, and compassionately on the mystery of the gift of one's self in marriage--"self" encompassing body, mind, and soul. (Interestingly, those self-same elements with which we are bidden to love God.) 

We have learned much about forgiveness, not only of others but of ourselves on this journey. Not a week goes by in which the recitation of the general confession at Church does not apply in some way to us as a couple, but neither does a week go by in which First Corinthinians 13:4--8 does not equally apply.

We realized soon after we set out to build Down Home Ranch that there is a power that mystically arises out of the vows of a married couple and out of the reality of their union, whether those vows are to love one another even when you just don't feel the love, or to build something together--a family, a business, a Ranch for the fruit of that union and others like her.

"A cord with three strands will not be broken." Thank you God, for being the tie and that third cord that has bound us together for 40 years, even when we didn't really know you.  Thank you for allowing us to see our "children and our children's children standing tall and strong as young olive trees around our table," and to see the community of Down Home Ranch become what we first envisioned it to be.

Three moms on a Monday afternoon

Monday afternoon two friends stopped by to see me and wish me well. Both are moms of daughters with Down syndrome, like me. Our daughters are 20, 28, and 38, so among the three of us we are confronting an interesting array of life issues that affect families of kids with disabilities, a topic never far from our minds or the reality of our lives.

Ashley is young, and her daughter Cristina in transition from high school to adult life.

Suzanne's daughter Julia has lived at the Ranch for several years and is approaching middle age (at least middle age for Down syndrome, which comes on quicker than for the rest of the population). Suzanne very recently and unexpectedly lost her husband, and she, Julia, and brother Jason are dealing with that sad reality.

Kelly, of course, is my daughter who at 28 feels she has nailed the early part of adulthood and is ready to move on, hopefully with her beloved Sterling, to a place of their own.
And I, of course, am in treatment for ovarian cancer.

We sat in the late afternoon light coming through the windows and talked of life, our daughters, our hopes and fears--all of which are there in abundance. Suzanne brought me a book by a friend of hers that she thought would speak to me. Ashley had brought me a pyramid of Texas oranges to pump me full of vitamin C before the next chemo.

Our daughters were out in their world, doing their thing, as we did ours.  But our minds were, as always, preoccupied by them.

We lamented our limited ability to advise our daughters, to console them in their grief, or alleviate their obsessions on their fears (Kelly is horrified by my hair falling out and no amount of explanation that "balder is not sicker" will suffice.)

Life's harsher realities will not pass them by.  They must face them just as we must. It is not fair, but there it is.  But in truth, we have little more at our disposal than they.  Our fears and tears are equal in this at least.

What makes it bearable is when friends reach out to offer encouragement, faith, and understanding, despite the grief, the busy schedules, and the holiday season roaring away outside the walls of our shared concerns.

You Must Read This!

Friends, this is the absolutely best-described first hand account of what happens to us when life hands us an infant with a significant handicap and our life changes forever.  It is from Slate Magazine, and it is a wowzer.

Feel free to let the author know that yes, she can look forward to many more years of those "full-bodied hugs." 

5:00 PM on a Tuesday

I decided to take Jenny the pup outside for a little stroll as the Ranchers were leaving work at 5:00.  Neighbor Tom, Isaiah House RA, was in the front yard ready to greet his guys when they arrived.  We chatted for only a few minutes and then here came the onslaught of adult trikes and bicycles hurtling down the Village road.

"Woo-hoo!" Kyle yelled as he bore down upon us.  Tom H. and Sterling weren't far behind.  We talked about this and that and Jenny and I proceeded up the trail.

I saw the Timbercrest ladies loading up to return to their home in Taylor, and went over to say goodbye.  Terry brought me up to date on her mom's health, and I headed back on down the road.

Passing Gabriel House, Mark came jogging out the front door and onto the road.  "Hi, Judy," he called as he sped on by. 

I came to Martha House just in time to see six spiffed up gals coming out of the house dressed up to go to dinner at the Olive Garden in Round Rock to celebrate Alaina's birthday.  Nothing like dinner at Olive Garden to ensure that they move out of their work clothes quickly into something more presentable!

Passing Barnabas, Zach moseyed out to say hello and give Jenny a scratch.  Andrew proudly showed me the flowers blooming in his tiny garden.

Rounding the bend toward home, Mark passed me again as I saw the Isaiah House guys already coming out to practice for their next flag football competition.

Though it was only about 5:20 or so, the sun was already low, and the Village lights blinked on.  Jenny did her business after attacking and defeating a few windblown leaves, and we came in the house to finish making supper--a delicious smelling pot roast from the first beef we'd raised from our Angus-Wagyu herd.

And Jenny loved the bone.

I woke up at 2:45 this morning and bundled up to take Jenny downstairs and outside to potty.  Jenny is a four-month-old King Charles Spaniel pup that Jerry brought into my life ten days ago.  If she does not steal your heart, you simply must not have one.

As I waited for Jenny to find the perfect spot to do her business, I looked up at the sky and the moon was astounding, rimmed by clouds, outshining even the urban lights of Austin.

"Wow!" I said out loud, and remembered I'd just heard a review of a book written on prayer, presumably for people unfamiliar with the traditional views on the subject.  It's called Help, Thanks, Wow: The Three Essential Prayers, by Anne Lamott. 

I realized I'd just uttered a prayer of praise, stunned by God's handiwork shining through the firmament.

I was not up at 2:45 just to take the dog out.  She can wait longer than that. 

I'm starting chemo today, and had to get up to take some pre-medication before reporting to the clinic.  A little over a month ago, I was diagnosed with ovarian cancer.  Never expected that. 

Help!

It's like a guillotine blade coming down on your life.  One day it's this way, and you're doing these things, and the next day everything has shifted, like a kaleidoscope that took a really big twist.  Normal life recedes swiftly into the past, as we day by day map out our new life.

But then things stabilize a bit and you begin picking up the threads.  Sunday we had a board meeting.  I didn't know if I could make it through the whole thing, but I did, and it felt really, really good.  For one thing, it is a huge comfort to know the Ranch is in the hands of such talented, invested people.  For another, it was great to realize my brain really is still capable of tracking complex discussions and taking notes.  My greatest mental activity for a month has been watching episodes of Restaurant Stakeout.

Our Thanksgiving week was amazing.  All the daughters and families gathered for a four-day moveable feast. We laughed and ate and watched football on tv.  I marvel at the love flowing between all these incredible people.

Thanks!

Four daughters, three sons-in-law and one son-outlaw, five grandkids, one grandson-in-law, and the Pumpkinhead, one-year-old Adam, our first great-grandchild, who provided the major entertainment for the festivities.  My cup runneth over.

Wow!
 

Hoopdedoodle

Well, didn't take long before the first thing that came to mind upon wakening in the morning was not: I have cancer.

This morning it was: I have mice.

That didn't take long.

We returned to Benedict House at the Ranch yesterday about 1:00 after several weeks in Austin.  It was an emotional homecoming, and I was fair exhausted before I managed to turn into bed last night.

I'd discovered the mouse problem in the house shortly before my diagnosis and subsequent 26-day stay in Austin and at the hospital.  I didn't figure an empty house sitting there without active rodent suppression was going to improve by itself, so I was not surprised to find lots of evidence.

Begining when I foraged for my fuzzy winter slippers upon crawling out of bed, and found pecans stored in the toe of the shoe, and all the lining ripped up to make a nest!

We pulled out the big guns.  Jerry went to town and bought about 50 traps.  I'd already laid glue traps end to end all over the pantry before I got sick.  We've found some covered with gray hair, but none with accompanying mice.

So.  Not only do I have mice, I have naked mice!

A nice man from Bug-A-Way came this morning.  He's a Rodent Infestation Consultant. We're pulling out the big guns.

Meanwhile, life at the Ranch goes on, and today is Rancher Nick's last day.  I'd volunteered to put together the scrap book of memories for him, so I got to task early in the day.  Luckily, Cathy Y, RA of Martha House, offered to help and came over bearing lots of supplies.   Together we finished the job with about 30 minutes to spare before the good-bye party.

After lunch, we assembled for the presentation, the tears, and the consolation: cake.  Sad as we are to see Nick go, we know his time here has been good for him, and good for the Ranch.  He's going to be a Yankee now, but says "maybe" he'll come back for Ranch Camp.

After lying down for a while to recover from the busy morning, I decided to hang out in the front yard for a while.  All our fall flowers are blooming, and the air is thick with tiny bees and butterflies of every description. 

Pink ribbons to welcome me home festoon the trees in our little front yard.  The sun is shining warmly through the cool air, the sky is that startling deep blue we get only this time of year, and the Ranchers are returning from their Nature Walk up the Village Road.  They visit with me and tell my my "new hair" looks great.  If they know it's a wig, they don't let on.

Michael found a little friend on his Nature Walk

My heart overflows with gratitude for everything and everybody in my life: cancer, mice, and all.  The outpouring of love, assistance, flowers, notes, cards, and visits from friends and acquaintances from a few months to 65 years has been stunning.

Most of all, I am grateful for all who have believed in and supported the building of Down Home Ranch, where Kelly and her friends support one another through life's journey, in good times and in hard ones. 

Our Ranchers have had a hard time of it lately.  We have lost two dads in the past few months, and everyone is shaken to realize even Jerry and Judy cannot go on forever.

But such is life.  We trust in God, and in His goodness as showered upon the Ranch in the best people have to offer of who they are and what they have.  It has been grace upon grace for 20 years.

What an honor, whatever happens, to have been a part of it all.

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. 

Return to the land of the living...

Wow, life as we know it can disappear pretty darned fast on a body!

Jerry has chronicled the day-by-day since I was diagnosed on 10/19.  And yes, I know I said this would not be a cancer blog, but a blog about being a parent (that would be me) of a dependent adult with disabilities (that would be daughter Kelly, aged 28 with Down syndrome) approaching the later years.

I said in my last blog that I saw this part of the journey as being an appropriate time to begin in essence transferring some of Kelly's dependency to her sisters, nieces and nephews, her boyfriend, and the community of Down Home Ranch.

I am also thinking that it is time to begin actively enlisting the churches our Ranchers attend in this phase of their lives.  Not all our daughters are active in a church, or believers in the strict sense of the word, but all were moved and comforted by the anointing for healing ceremony Fr. Larry conducted following Mass the day before surgery.  We need to take the lead on ensuring that when our Ranchers have life-altering events happen to them that their church family is there in a meaningful way for them.

We've talked all this over with older (we call them the "grandsisters" since they are 16, 20, 2nd 24 years older than Kelly!) sisters Janis, Martha, and Carolyn.  We carefully arranged her first post-surgery visit for the Tuesday afternoon on the day following the operation.  Alas, she and Sterling arrived just at the same time as the beginning of a violent attack of nausea and vomiting.  This was not something I could fake my way through, try though I might.

And so I suspect things will be bumpy all the way through. Kelly appears to be handling things well, all things considered.  As we approach the chemo stage and the changes that will occasion, we continue to plan to help Kelly adapt.  Tomorrow I will work on a social story about what will be happening over the next few weeks.

Sister Janis will come with us and Kelly to the first post-surgery conference with Dr. Smith, to meet the woman who is caring for her mom, and we will all be on the same team.  We'll take her to see where my chemo treatments will be so she will have an accurate picture.

Like most people, Kelly hates uncertaintly, and sadly, we can make no guarantees except this: Whatever happens, however things turn out, she will be loved, and supported, and cared for.  We will pay her the respect due a full, functioning member of this family, handicap or no.

My youngest daughter is not less than anyone.  I have witnessed the same struggle to mature, to be courageous, to grow in Kelly as in each of our amazing other daughters.  It has been an honor to be her mom, and if I have my way, will continue to be for years to come.

                                                                          ***

UPDATE: Jerry originally posted on CaringBridge what we first believed was my diagnosis, ovarian cancer.  It actually turned out to be ovarian/endometrial cancer, with an excellent prognosis for cure.  I have been stunned by the outpouring of love, cards, gorgeous flowers, visits, phone calls, emails, etc. over the past week.  I have reconnected with friends from 40 years ago.  It is not hard at all to see the blessing in these hard times.

Thank you.

When Kelly was born with Down syndrome in 1984, the mother of an eight-year-old boy with Downs visited us in the hospital.  She said to me, "Believe it or not, the day will come when the first thing that comes into your mind when you wake up in the morning is not 'I am the mother of a mentally retarded child.'"

That day came, though I can't tell you exactly when it was.

Today I wonder if the first thing I think upon waking will ever not be "I have cancer."

This is not a blog about cancer, and it's not going to turn into one, but it is a blog about parents with children of all ages and how we as individuals, and as families, cope with life-changing events like serious illness and death.  So that's what I will be writing about in the days to come.  We must now work through with Kelly the hard bumps in the road that lie ahead.

More than one parent has told me, I can never die!  Others have confessed their prayers that their children die before them, so desperate are we to always be there, as we have always been there, for our kids with special needs.

But we can't.

Jerry and I started Down Home Ranch in part as our own response to this eternal dilemma, and thanks be to God that we did.  Kelly is surrounded by a veritable host of friends, buddies, staff members, and others who love and support her.  They have worked out their own ways of coping and helping each other through these hard times.  It is time for her community to take a bigger role in doing just that.

Which is not to forget our family, of course.  Kelly has the great blessing of three wonderful older sisters who love her and are there for her.  I will encourage Kelly in the months to come to shift her focus gradually away from me and to her sisters for the family support she will always need and enjoy, and I am explicit in explaining to my other daughters why this is so: Should my surgery and chemo be ideally successful, we shall all rejoice, but at 70 the handwriting is on the wall, and realities are emerging.  It is only a matter of time.

This morning two of my daughters, Jerry, and I met with Fr. Larry after Mass for the Sacrament of Healing, the laying on of hands, and the anointing of oil.  I made my confession on Thursday.  I know that my Redeemer liveth.

At the Desert Solitude Retreat in Cedar Brake in 2011, I experienced the love and the joy that God holds for each of us, and came to understand that Christ did indeed pay the full ransom for me.  I had understood the claims of the church intellectually, but had never before felt that soul-penetrating Presence. 

"All is accomplished," was the message. 

And I came to know that the Lord is indeed the Shepherd of my soul. 

Thanks be to God.

Wondering, Part III

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.

Jamaica 4

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 m

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.

ake 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.

Mulling it all over

Jer and I got back from Jamaica late Monday.  Tuesday and Wednesday I caught up on a bit of work at the Ranch and Thursday we went to Houston to hear a lecture by Fr. Robert Sirico, President and Founder of the Acton Institute.

That these events happened so close together is providential. 

The mission of the Acton Institute is to defend free enterprise not only as the best, but the only, hope for material comfort and political freedom for the people of our world.  Free enterprise alone sets the stage for the creative flowering of art, technology, literature, and the true exercise of moral choice. 

I know many who read this statement wish to debate this premise, but the Acton Institute does that so much better than I that I beg you to go to their site and read their materials and arguments with an open mind.

Suffice it to say that the long-term solution for what I saw in Jamaica has to be free enterprise resting on a firm foundation of moral and ethical values.

In our end-of-day discussions, we touched on that as I explained to my co-volunteers the tremendous effort we put in at Down Home Ranch to ensure that our Ranchers have meaningful choices over what happens in their lives.

More than once I muttered sadly, "I guess it boils down to the fact that countries exhibit about as much compassion as they can afford."

And that is the bald, ugly truth.  The Brothers of the Missionaries of the Poor work ceaselessly to ensure that the people we met and briefly cared for have the basics of life in a society where the vast majority of people have very little more than that and many have much, much less.

Jamaica is ruled by thugs and gangs.  The daily newspaper is little more than a catalog of mayhem from the preceeding 24 hours and stories of the devastated famililes left behind.

I met a man from Canada at the airport on our last day.   He owns a health-food business in Vancouver and was on a scouting expedition to Jamaica wishing to start a large farm to help supply his company with product.  He estimated needing 75-100 employees.

"But I don't know," he said, shaking his head.  "The corruption, the graft, the violence.  I would have to hire so much security just to do business.  I just don't know if it's workable.

"I really hope I can find a way," he added.  "The Jamaican people are so full of life, so energetic, so smart.  But I just don't know if I have the expertise to do business in these circumstances."

What does that have to do with the 550 people served by the Missionaries of the Poor?  Everything.

Absolutely everything.  Those 550 people are in the custody of the Brothers because their families can barely feed themselves, and have no means to care for a person with disabilities or mental illness.

Economics has way more to do with the choices we make on a daily basis than we are comfortable admitting.

The Brothers understand this, coming as they do from countries where there is rampant poverty.  They have chosen to be Christ's hands in ministering to the poor.  They have chosen poverty themselves.

Please say a prayer for them today, and for Jamaica.

Reference:  Defending the Free Market: The Moral Case for a Free Economy, by Fr. Robert Sirico

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 II

Kingston, Jamaica, Saturday, September 29, 2012

I awake at 4:30, eager to beat the crowd to the showers.  Alas, someone is already in our upstairs shower so I creep down the stairs to the one located off the carport.  I can see that it is free, but the gate has not yet been unlocked.

Sister Joanna appears and says that today we are allowed to sleep until 6:30 but I can shower if I want.  I know I'm done with sleep for the day so I opt for the shower. I'd forgotten shampoo so I used the small bar soap in my kit from the Omni and discovered it worked fine.

Back upstairs I get dressed.  Most of our team members are already awake.  Turns out nobody got the news about the later wake-up.  I go to the chapel to sit and read up on Morning Prayer.  I'm used to my abbreviated version in Magnificat, but baffled by the tomes of the Divine Office we are given for the standard version.

A bigger contingent of musicians shows up today for Morning Prayer and Mass.  We chant the psalms and sing praise and worship music.  The brother nearest me has a remarkably beautiful baritone voice.  I get distracted watching him sing and note that he appears to be professionally trained.  I ask him after Mass and he looks astonished and says, "No!" and hurries away.  (We are not supposed to induldge in chitchat with the Brothers.)

We are loaded into the van and taken back to The Lord's Place and Bethlehem.  Today Jerry and I are to work in Bethlehem.  We very much want to work together today, as do Trish and Alan.  We have lots of experience in babycare teamwork! Plus, Jerry and I are the oldest in the group, and figure caring for babies will be easier on our aging frames, as the young people who worked in the older boys' ward yesterday told us that caring for them was physically very demanding .

We are assigned to the older boys' ward.  The boys appear to be, by their faces, in their mid-teens to early twenties.  They are all greatly afflicted with cerebral palsy, their limbs contorted into an incredible variety of configurations I have only seen in photographs.  Jerry is given the task of wiping down all the frames of the metal cots and the plastic-covered mattresses with insecticide/repellant, as ants are a constant plague.  It is an enormous, cavernous room--high concrete walls with window close to the ceiling, concrete walls and floor.  Not a picture, not a cruxifix, nothing that is not strictly utilitarian is present.  There are light bulbs hanging from the ceiling, but they are not lit so it is dim, especially as the day is cloudy and little light makes it through the windows.

I am provided a shred of a broom whose best days are in the last century, and gamely tackle the floor.  Alan mops with disinfectant behind me and Trish is assigned to help with bathing.

The boys and men lie on their cots.  Some are responsive, some are not.  We smile and say good morning to each as we go about our business.  Their eyes track us.

One young Brother is dispensing meds.  Trish and another are taking patients to the showers across the hall.  The Brother helping with bathing sings softly in a clear tenor voice.  It is soothing beyond imagining and of all souls, I suspect mine needed it the most.

My "fix-it" mentality is running in high gear this morning.  I suspect at least some of these boys and men are (or began) intellectually intact.  I wonder about their lives, locked inside the prisons of their bodies, in turn locked within the prison of this place.

Could not Mozart be playing?  Could there not be pictures on the walls to contemplate?  Even the ghastly, ubiquitous televisions that are everywhere in the United States would offer a little food for thought.  What is the reasoning behind this sensory deprivation all around me?  If you transported me unawares to an unoccupied ward and asked me, "Where are you?" I would venture in a gulag or concentration camp by all appearances.

I am assigned to feed one of the older men his bottles of thick formula.  This I can do!  Brother tenderly positions the man with his head elevated on a foam wedge and tells me, "He eats very slowly.  You must be very patient."

I speak to the man as if he can understand everything I say, although he seems only semi-concious.  His head is normal sized, and he is handsome.  His body is diminutive, the size and heft of an eight-year-old, and grotesquely twisted into an improbable state.

Sucking is hard work for him, even though the hole in the nipple is the size of a penny nail head.  I help by gently squeezing the bottle to help the flow keep going.  Every now and then he shows signs of distress, and I lift him and turn him to the side and gently pat his back as he coughs and clears his throat.  We proceed like this for some 40 minutes.

An auntie approaches and says brusquely, "You are too slow.  Let me!" and snatches the bottle from my hand.  I try to protest but am dispatched.  I watch as she squeezes the bottle hard, shooting formula into the man's mouth.  He begins to cough as the expected trickle down his throat becomes a jet stream.  Sadly, I go away. 

I tell this story to Trish later on and she said, "Yes, and when she left his bed he threw it up."

It is time for Noon Prayer and lunch.  We have fried hard-boiled eggs in a tasty curry sauce over rice, novel but satisfying.  We speculate that the chicken must be the most revered food source in all Jamaica, if not the sole one.

Among ourselves, we share our dismay at the treatment of the residents by the aunties.  We wonder why, in a country as poor as Jamaica, with such a high unemployment rate, it is not possible to hire people who can treat them decently.  We wonder if maybe we are misinterpreting, with our bleeding-heart Austin sensibilities, typical interactions between Jamaicans. 

We are baffled.

This afternoon we work only an hour more and then are taken to the National Stadium, an indoor arena where the Missionaries of the Poor are presenting Fr. Ho Lung's production of The Messiah, definitely not to be confused with Handel's, but representing a distinctly Jamaican take on the story of salvation from the creation of the world through the Ascension of Our Lord, all in song and dance.

The production is impressive and very entertaining.  All singers and dancers, many of them professionals, donate their time and talent to the ongoing presentation of this work.  It is the main fund-raiser for MOP, which relies less upon ticket sales and more on the collection taken up during intermission. 

Last night it rained hard, and some areas were still experiencing minor flooding, so the crowd, though respectable, is a little sparser than it would normally be.  We sit in the rafter area with the Brothers and other volunteers.  I buy an orange soda, which I don't really like, but I was thirsty.  It just tastes strange, though some of our group like it, so I set it aside.

Afterwards, waiting in our little bus with the windows open, a young boy comes to talk.  He is friendly and curious, and doesn't ask for anything (we are usually approached for help with visas first, and money failing that).

"America is the best country," he says, "with scientists that think of all these new things and everybody has it good there.  You can do anything in America."

I fervently agree.

Back at Holy Innocents, we have Afternoon Prayer, and supper.  Someone has seen an ice-cream parlor nearby, so defying all the rules, a contingent of our young men is sent out on a mission.  They return safely with a cache of vanilla, chocolate, coffee, and strawberry ice cream.

It is phenomenal, more like gelato than American ice cream.  The coffee is unbelievably good.  We agree the butterfat content might well be 100%.  We eat ourselves into a stupor and after Night Prayer go to bed, where both Jerry and I sleep like angels in our cots.

Sunday our only responsibility will be to return to The Lord's Place and help the residents dress for Mass.  After that we are free, so we have asked Sister Joanna to help us get a hotel where we will spend the night.  The young people have secured a private bus to take them to a fishing village, but we are tired and feeling old and direly in need of connection (wifi!) with home and the Golf Channel.

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.

Learning the culture of autism

Still on vacation in Autismia, trying to learn the ways of the native culture.

Already our little excursion has borne fruit.

Anita reported that when our "big guy" with ASD became agitated last week she was able to see his behavior for what it was, and knew all to well from experience where it was going. Instead of trying to reason with him, she just said, "Hey, buddy, would you like to play a quiet game of checkers with me in another room?

"Sure would, bud," he replied. The time spent was more than worth it and, needless to say, Anita got whupped at checkers!

Last week we began watching a dvd by Carol Gray, who pioneered the use of "social stories" to help people with autism spectrum disorders (ASD).

Creating social stories can help a person with ASD "see" the situation he or she is struggling with in a non-threatening way.  People with ASD frequently experience a lot of anxiety due to their inability to read social clues and decipher what is going on with the people around them.  People with optimally functioning social skills swap non-verbal social cues with lightning speed, on the fly, without thinking about it.

Why the anxiety?  Well, do you feel anxiety when you come home from work and your spouse or significant other has put on the stone face and you have no idea why? Suppose you went to work one day and everybody there was like that.  You'd surely expect to be fired by noon. Would you feel anxious?

Think about Kafka and the "faceless" bureaucracy.

No, on second thought, don't.

The point is, if you can't read faces, they all look the same. 

When I began to get the gist of where Carol was going, a small light bulb went on:  Oh, yeah--that's what I'm doing when I journal!  I'm literally stepping outside the whirling stream of human interaction and putting things down on paper so that I can look at my situation objectively.  I'm lucky enough to be able to do that for myself.

Jesus told social stories and we call them parables, and so did Aesop when he wrote his fables.  We NTs (Neuro-typicals) have had our social stories forever.  Ours, though, rely on intuition, metaphor, and imagination to make their point, so they don't always work too well for people with ASD.

Social stories for people with ASD are like the old Dragnet TV shows:  "Just the facts, ma'm."  They seek to present information that a person with ASD is not able to intuit or deduce from the whirlwind of sensory information swirling around him.  They help work around some of the common traits of ASD, like tactile defensiveness (not wanting to be touched).

Here's an example of a social story written to help a child who needs to get a haircut:


When my hair gets long I need a haircut.
It is important to have a haircut so I look good.
I will look different with my haircut. Looking different is ok.
My hair will grow back again.
When I have my hair cut we will go to see (name of hairdresser) - insert photo
I will sit in the chair quietly.
The haircut may tickle but it will not hurt
When the haircut is finished mum will say “finished now” and I can get out of the chair.
Mum will be happy, the hairdresser will be happy.
My hair will look different and it will look good.

This week we start writing social stories of our own.  First we'll write them for one another, and then next week we'll explore how to write them for our Ranchers.


Photo courtesy:  http://www.visualphotos.com

From Mexico to Autismia...journey continued

OK, so today's our first autism training class we've had for quite a while.  In planning our session over the past week, my mind kept going back to an experience that got me in trouble that I'd had in Mexico as a graduate student in Spanish & Portuguese at the University of Colorado many years ago.

I'd learned Spanish in the university, beginning in my mid-20s, with no "in-country" experience.  I was adept at discussing Don Quixote, but stammered and struggled in conversations that wandered outside the realm of academe and literary criticism.

So I signed on for a semester as the Assistant Director of the university's study abroad program in Xalapa, Mexico in order to gain fluency and expand my linguistic horizons.

I preceded our students by about two weeks, during which time I worked with the Directors of the program securing housing in local homes, setting up curricula, and making arrangements with the Depto. de Humanidades of the university for classes our students would be taking.

Though I'd travelled extensively in Mexico and Central America, the difference between life as a tourist and trying to work in the native culture was enormous.  I literally could not "read" my hosts' intentions and concerns, and they could not read mine.  I was repeatedly "stood up" by colleagues with whom I was certain we had firmly agreed on a specific place at a time and date certain.

"Ay, Choo-thee," my Mexican Director would laugh, "They didn't really mean it when they said they'd meet you but they didn't want to be impolite and tell you so!  Once you learn more, you'll figure out how to know when they mean it and when they are just being polite."

"Polite!" I'd sputter, "What's so polite about telling somebody you'll meet them when you know you can't or won't!?"

Leticia just smiled.

Later in the semester, my cultural cluelessness created big trouble for one of my professors.

Memo (short for Guillermo) was a charming young professor of English language and literature at the university.  He taught a course in which many of our University of Colorado students were enrolled for credit and I was assigned to be his teaching assistant.

One day well along in the semester, I was also asked by our American Director to proctor an exam for him the hour following Memo's English lit class.  This was a bit problematic as Memo seldom began or finished his class on time.  I thus explained beforehand that I would probably need to leave our class early in order to begin administering the exam for Tony, who as a true American insisted on beginning his classes precisely on time.  No problem.

So far.

As usual, Memo arrived for our 3:00 PM class at about 3:25, and began lecturing on an American novel (alas, the name escapes me) with the word "You" in the title.  At some point he mentioned the Spanish translation, using the formal word for "you" in the title.

"Ah, Memo," I corrected him in English.  "I've seen that in the bookstore and the translator used the familiar you."  This mattered, because if the students went to the library and wanted to find the novel, they'd need to know whether to look for tu or usted in the title.

"For certain?" Memo inquired. 

"Absolutely, I'm sure," I replied.

Then, noticing that it was almost time to be at Tony's class, I gathered up my belongings and slipped out the door.

That night there was a cultural event in the student center, so after supper I returned to campus.  Entering the center, students from Memo's class began coming up to me.

"Oye, Choo-thee," they said.  "Estabas bien enojada con Memo hoy, verdad?"  Hey, Judy, you were really ticked off at Memo this afternoon, no?

"Oye, Choo-thee.  Es verdad que Memo realmente no sabe ingles?"  Horrors!  True that Memo didn't really know English?

I spent the whole evening quelling rumors that I Memo had offended me, that Memo was a bad professor, that Memo didn't really know English at all and was just faking.

Where could all this have come from?!  Where did they get these ideas!?

I rushed home to Leti and poured out my story.  She laughed and asked me exactly how I'd left Memo's class to go to Tony's.

I told her I'd just quietly departed the premises.

"That's it!" she exclaimed.  "Here it's rude to leave one group to go to another one and nobody would ever do it unless they were angry or upset."

"Even if they were expected elsewhere?" I pleaded.

"But the students didn't know that!" she said.

"What should I have done?  I didn't want to disrupt Memo's class."

"Oh, you should have," she assured me.  "You should have slapped your forehead and said, 'Oh my God, it's almost time for Professor Lozano's class and I have to give a test for him today in Contrastive Analysis!  Memo, I'm so sorry to leave, but you know Tony, he's got that crazy American thing about starting everything on the dot!' 

You should have apologized to the students for having to leave the class to teach for that crazy American professor. 

Ay, Choo-thee, you should have made the really big deal about the whole thing," she concluded, as if by now I hadn't figured that out.

And so I spent the remaining five weeks of the semester singing the praises of that fine professor of English, how I had rarely witnessed such grasp of the English language anywhere in Mexico, how I wished I could switch programs and study myself under his expert tutelage...how Memo was the best prof in the department!

And Professor Lozano?  The students were agreed that Professor Lozano, though he was fair and knowledgeable, and his Spanish was absolute perfection, was nonetheless cold, aloof, unreadable, and strange.

Sounding familiar?