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? 

On the road

I spent last evening watching Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood, a British psychologist who has studied and written widely on the subject.  This in preparation for a series of trainings we are undertaking with our staff to learn more about Asperger's and autism.

While I like to joke that I speak fluent Downs, I can't claim the same about the autism spectrum.  If anything, the whole subject, especially when it gets into the areas of anxiety and social cluelessness, is uncomfortable for me--not surprising, since I have struggled my whole life with these very issues. 

Most cerebral people, I find, when they really sit down and look at the spectrum, are able to locate themselves on it somewhere.  If you know me well at all, I have probably inflicted upon you more than you ever wanted to know about certain subjects.  (My apologies, but really, in your heart of hearts, how can you not share my horror at the loss of the pluperfect subjunctive in everyday English usage?  I'm just saying.)

And so I have struggled to do justice to our Ranchers on the spectrum.  Anxious people push my anxiety buttons.

But last spring, in the daily struggle with my own anxiety disorder,  I discovered a simple relaxation ap for my IPAD.  I've tried so many things, read so many books, taken so many pills, usually with some marginal degree of relief but not really much help when push comes to shove. 

(I sympathize with the character in a famous New Yorker cartoon: "I garden, I meditate, I take bubble baths.  Why do I still feel like I want to slug somebody?")

These simple little aps (www.withandrewjohnson.com), lo and behold, for whatever reason, taken like medication for 15 minutes, after lunch, in the midst of my busy, stressful day--amazing.  Within weeks I was able to sleep through the night and get through the day without the host of symptoms that have plagued me since I was a teenager.

Therefore I was not surprised to see daily relaxation prescribed on the Attwood site for people on the spectrum. 

It's a step to take at the beginning of a long journey.

Beckoned or drawn?



The angel bugging Elijah under the broom tree

 In his homily this morning Fr. Larry said that the beloved hymn, I Am the Bread of Life, has misled a generation of Catholics, beginning when the word "beckon" replaced "draw" in the line, "Unless the Father draw him," this in order to protect the tender sensibilities of that part of the populace that has a hissy fit at the notion of using a pronoun to stand in for all of mankind...er, pardon me, humankind.

If we are drawn to something, it exerts a hold on us, often one we can't explain.  There is a sense of being reeled in, pulled inexorably toward the object of our fascination. 

If we're beckoned, we're free to go or not. 

But if the Father draws us, at some point we will have to say yes, I accept, or no, I reject.  And let's face it, the Father doesn't make things easy for us.  Most of the time the thing he's asking us to accept is, well, pretty unacceptable.  We're about as enthusiastic over the notion that he knows what's best for us as our kids are about the notion we know what's best for them.

Poor Elijah sat under the broomtree ready to close his eyes and die, discouraged and betrayed.  But would God leave him alone?  Heck no, he kept nudging him with an angel and leaving bread and water and poking him to get going again.

When our baby Kelly was born with Down syndrome, Jerry prayed his first prayer in 25 years, and it was not one of gratitude or acceptance.  But within the same hour he also said our assembled daughters, "Now we find out who we are as a family." 

God had begun to reel him in.

Hands on vs. bureaucratic love



Fr. Charles Susai

 We had a visit a few weeks ago from our friend Alan Graham of Mobile Loaves and Fishes, a ministry to the homeless here in Austin. 

Alan brought along Fr. Charles Susai of the Missionaries of the Poor, an international Catholic organization serving the poor, the homeless, the destitute, and the abandoned, along with an MOP supporter John Scarpatti, who has been involved with the MOP mission in Kingston, Jamaica, for years.

Alan, like my Jerry, is a visionary.  My mom used to say of Jerry, "That man reminds me of that old song that goes 'Now what makes that little old ant, think he'll move that rubber tree plant...'"

"Whoops!  There goes another rubber tree plant!"

I'm sure similar things were said about Alan.  Currently he is working on a plan for what you might call homes for the homeless, 27 acres in far East Austin with shelters ranging from sturdy platform tents to tiny cottages and RVs, with lots of outdoor space and barbecue pits and benches and gardens and chicken runs and areas for contemplation. 

Alan says, "You know, lots of homeless people really just like being outside." 

At our Friday night dinner we talked of many things.  The men stayed overnight in our cabins here in the Village, and the next day Jerry picked them up for a tour of Down Home Ranch. 

Needless to say, Fr. Charles was astounded by our real estate here at the Ranch.  We serve our 32 Ranchers in large, beautiful homes, with private bedrooms for all, surrounded by other buildings that offer room for recreation, education, and job training.

Fr. Charles and his brothers serve the 600 souls in his keeping in pavilions open on four sides to the tropical sun and rain, with modest structures for the hospice patients and the ill.

Naturally, by the end of their visit, Jerry and I had signed on to go to Jamaica in September for a five-day stint with Alan and his entire staff.  We will get a chance to work for a few days with the MOP brothers in service to Kingston's poor, face to face. 

"Sure you want to do this?" Alan asked before he left.

"Don't worry!" I said, "I've done it all."

And we have.  The first year we did camp we became intimately involved with strangers' bodily functions, learned that you can't leave a camper alone in a bathroom with a full can of Comet (don't ask), and that applying sunblock can occupy more of your working day than you ever could have imagined.

We ran Gabriel House for 4 1/2 years, and those were in many ways the most satisfying years of my 20 so far at the Ranch.  I loved cooking for the guys, who loved eating my food.  I loved their brotherly interactions with Kelly, still in high school and considered the pesky little sister of the house.

We had no weekends off, and both continued in our day jobs as Executive Director and Program Director.  Gabriel House was our life.

Since then my work has step by step taken me further and further away from what I call "hands-on" love.  I now spend my days in what I call "bureaucractic love," since resuming the post of Program Director in May. 

You don't have to remind yourself what hands-on love means.  It's immediate, you're there, the object of your love, your service, stands before you in the flesh.

Spending hours filling in forms, gathering information, training staff, figuring out schedules, reporting to agencies, going to meetings...I have to stop during the day and remind myself why I am doing this. 

Sometimes the forms, the meetings, the agency reports distance me so from the reality of why the Ranch was founded I have to bop down to the Pavilion to mingle with our Ranchers, hear the rumor of the day, and get a hug or two to get centered again.

Jerry and I are both in our 70s, and I guess in Jamaica we'll find out if we actually can still do it all, especially in the tropical heat.  Regardless, this whole experience has been good as we refocus our priorities for the Ranch and return to our original vision, look back at how we got from there to here, and consider what it all means.

I have had a decades-long fascination with and interest in St. Benedict, and this time around as Program Director know that I was ill-equipped to take on the task of shepherding of souls who were employees of the Ranch.  I made lots of mistakes with the best of intentions.  I have tried to learn from those mistakes.

So daily, I ask St. Benedict, who wrote the book on management with his Rule of St. Benedict, for his intercession and guidance in my role as I support the work of those who now do provide the hands-on love to our Ranchers.

And I can't help but notice that our schedule in Jamaica will include morning, evening, and night prayer and daily Mass and contemplation.

In other words, to do this work well, we must connect to the Source of why we do it at all. 

Dog Day Jeremiads, con't.

It's interesting that my last blog followed the one about Ranch neighbor Dud Morris, WWII vet.  Dud and his war buddies were the human line of defense against Japan and Germany's intent to take over the world.  We owe them our freedom. 

Jay Leno roams around asking young people questions about our nation's history.  They think the Civil War happened 50 years ago and never heard of the Revolutionary War. 

They've heard of Ben Franklin and think he might have been a president.

Jefferson wrote, in a passage we all used to know well because we had to memorize it that we are "...endowed by our Creator with certain unalienable rights."   As Americans, we officially believe that our rights are God-granted. 

That confers, rightly, enormous dignity on the individual.  It was the basis for ending slavery in the 1800s and granting of full rights of citizenship to African-Americans in the 1960s.  (Jefferson was posthumously hoisted on his own petard, as it were.)

In the intervening years, these these e rights were claimed by others, including people with disabilities.  A person with Down syndrome can today seek redress for violations of his civil rights.

IF he can manage to get born.

The government of Denmark has just announced that there will be no babies born with Down syndrome in Denmark by the year 2030.  Announced, proudly, without irony, that individuals with an identifiable disability shall be systematically targeted and eliminated as being unworthy of life (do the Danes recall who gave the world that little phrase?)

Not a problem for most Americans, who abort babies with disabilities at a 90+ percent rate. 
To do this, they pretend they are not human, which is what we say of of people we consider nuisances.  Ask the Jews, the Tutsis, the Albanians, the Native Americans of long ago, the baby girls of China.

We do this because they are very small and very weak.  Because we don't want them.  Because we are careless with the gifts God gives us.

Every life comes into the world bearing a message from God. 

Don't kill the messenger.

Gifts from God and the Government

It's hot again.  Dog days.  Lots of jeremiads in my daily scripture readings, so I thought
I'd write one of my own.

A lovely family visited on Wednesday.  I greeted them, answered some questions, and then sent them off with Mark for a tour of the Ranch.  Their daughter was politely disinterested until Mark and the other Ranchers showed up, and then she lit up like a Christmas tree! 

After they returned they had more questions, largely concerning funding of the Ranch and how it works.  Whenever I need to explain these things I think back to the early days of the Ranch, when I labored in utter mystification and ignorance of "The System."

The System encompasses--for a start--the agencies of: Social Security Administration, federal and state Health and Human Services, the Centers for Medicare and Medicaid, the Department of Aging and Disability Services, Mental Retardation Authorities of the state of Texas, state and local fire marshals and life and safety agencies, the Texas Dept. of Health and Sanitation, etc. 

And that's just for your run-of-the-mill kid with Down syndrome.  You can also get involved with a plethora of other agencies with an investment in your child should you have complicating medical, psychiatric, or other needs.

I recall a friend in the early days who showed up for what she thought would be a routine meeting with her school's special ed team and discovered a hoard of representatives present for the "transition" of her son, who was turning 18, all with papers for her to sign and plans for her boy.  (This was in the days when there was money for this sort of thing.  Theoretically, anyway.)

"I was horrified!" she cried.  "It was like they were there to take custody of him!"

Back then it was almost impossible to figure The System out from scratch.  Today, it's not easy, but it's possible due to the 'net.  Not easy, but possible.  DADS has a good website that explains the different programs.

Which brings me to the point of all this, the heart of my jeremaid, which is the distinction between the two major publically-funded residential programs for people with intellectual disabilities.  Settle in for a long story...

Back in the mid 1800s, believe it or not, there were a fair number of places something like Down Home Ranch, located in the country, centered on providing a humane, decent life and care for people with IDDs, then classified into three major divisions: Idiots, Morons, and Imbeciles. 

Yes, those were scientific terms.

They were charitable in nature, and arose from a desire to help.  Their residents did farm chores and lived together in a small community that they seldom if ever left.  Their live spans, lacking today's medical interventions, were generally short.

At some point that model was taken over by the state.  These communities became bona fide institutions, and over time became ever more crowded, dumping grounds for unwanted souls.  Medical researchers began using their inmates, which of course included children, for medical experiments, some of which were quite comparable to those carried out by the Nazis.

By the time Robert Kennedy carried out his investigations (thank you Geraldo Rivera and the Kennedy family) of how our nation's mentally ill and mentally incompetent were treated, conditions had reached a state that would surely--surely--break the heart of any decent human being.

I cannot bear to give examples.  Google if you dare.

In the 70s things began to change due to outcries over the revelations of the federal investigations.  The Education for All Children Act was passed.  And the feds took over the delivery systems of mental health/mental retardation of several states, Texas included.

State "schools" began to improve dramatically as states were forced to step up the funding of them.  Although the campus-based model for service delivery was coming to be seen as undesireable and in some way causative of the conditions that had so horrified the nation, they improved to the point where the parents of those who lived in them actually formed advocacy groups to keep them open.

To get people out of the institutions, the desireable model came to be seen as "living in the community," and so the Intermediate Care Facility for Mentally Retarded (ICF-MR) was born.

ICFs-MR allowed people to live in smaller aggregations (generally six to 32), and were intended to get them out of state schools and nursing homes, until then the only alternatives to remaining at home with Mom and Dad.

ICFs-MR were located in regular neighborhoods (initially there were lawsuits to keep them out but fair-housing acts prevailed).

ICFs-MR bettered the lives of a lot of people.  Some of them were the people served, and some of them were the people who set up compaies to serve them as ICFs-MR became cash cows.  (Which, by the way, didn't necessarily mean that those companies did not do a good job--back in the day there was enough funding available to allow for some very tidy profits.)

Down Home Ranch is today an ICF-MR.  Long gone are the days of lavish reimbursements for caring for people with IDDs, which is a very, very expensive undertaking.  Although the basic reimbursement sounds generous, when a provider takes in a client (or "consumer" as they're called these days, though I can't bear that term and refuse to use it) it assumes total and complete responsibility for every aspect of his or her care--health, wealth, and pursuit of happiness.

It costs a lot of money, so much money in fact that the feds decided in the 90s to phase out the program and figure out a way to save some of it.  Happily, a lot of academics and agency thinkers were deciding that the ICF-MR model was outmoded and what was really need was choice for the consumer--choice of where to live, with whom to live, how to live.  The "Money Follows the Person" model was born!

And HCS, or Home and Community Based Services, began to be rolled out in various states as a "Medicaid-Waiver" program, along with a handful of others.  (What are you "waiving" you may well ask.  The answer is: the right to live in a nursing facility which is the technical classification of an ICF-MR.  I wondered for years!)

HCS was touted far and wide, high and low, as the best thing to be invented since cheese.  Clients were put on waiting lists for HCS, under which, we were promised, we would find the sweet promised land, our beloved children living in loft apartments in downtown Austin, taking the bus to work at Whole Foods, enjoying the fine urban life.

The waiting lists grew, and grew, and grew.  And one day we woke up to discover just about all the people in Texas with IDDs were on it, several tens of thousands of them.  They had projected waits of from seven to 67 years (yes, really, one of our Ranchers was told he could expect a wait of 67 years).

Headlines blared that 40,000 people in Texas were waiting for services.  Meanwhile, ICFs-MR were sitting vacant, ready to be moved into tomorrow as families erroneously believed that you also had to wait to get into one of those.

But...if you wait that long for something, it must be really, really valuable, right?  Well, maybe.   Here are the interesting facts:

Yes, HCS is an alternative offering more choice, but that choice comes at a cost.  One of the costs is that the family assumes (or retains) more of the risk and responsibility for caring for the client.  Not necessarily a bad thing, but remember this: Whereas the academics and agency thinkers were desiring more freedom of choice, the government money-mavens were desiring lower funding of services.

So HCS funding for any client is capped at 80% of what it would cost to care for a person in an ICF-MR facility.  It's a cheaper alternative!  Who knew?!

I hear all the time:  "We've been told that HCS is the Cadillac of the service delivery programs."  Parents are shocked when I tell them the facts: that they will have to justify every service they want for their child under HCS.  Under ICF-MR regs those services are mandated.

The upshot?  It will prove ever easier to choke down funding under HCS as our public funds continue to dry up.  (We've already sustained significant cuts and fully expect more to come.)

There are other problematic aspects of HCS, and one big one is that providers must agree to abide by is the "zero-reject" policy.  A common problem in the small group HCS homes is that a client leaves and a new client appears on a first-come, first-serve basis and this client turns out not to be somebody you would want your child living with.

We parents have most of us been through this before in our child's public schools.  We removed our daughter from school twice because of the presence of students who were a physical menace--first from middle school, and second from high school when they moved up from middle school--and not so much because we feared for her physical safety as because of the fact that all resources were now shifted to maintaining effective control over these boys.

One of those boys could show up on our doorstep tomorrow and demand to be served, and if we had an HSC opening, we would have to serve them, no matter the costs--financial and otherwise--this would impose on us, and (much more to the point) the cost in degradation of quality of life it would impose on the other two men in that home and the other clients in the providers' program.

There are other problems with HCS, too, such as the implied assumption that other people with disabilities are not fit to be friends of people with disabilities.  We had a resident years ago on HCS who had a Community Integration Specialist (or something of that ilk) assigned to him to "take him out in the community" on a weekly basis--you know, go to a movie, shop, go bowling.

He was all for it but wanted a buddy to go with him.

If the buddy had not had a handicap, there would have been no problem, but as it was one of the buddies he lived with and he did have a handicap, he was not eligible, because he had a handicap.  Got it?

He wound up having to go with his CIS on outings he came to dread in order to keep on consuming his HCS services and not lose his slot. 

But that's how these things work, alas.  The Health Department would come out in the days before we had a real pool and make us put an 8' fence with a locked gate around our 3' above the ground splash pool but ignored the 20' deep pond a few hundred yards away because they only had jurisdiction over the 3' pool.

I suspect this was something of a waste of taxpayers' money, but I can't prove it because it's possible 12 people did not drown because of that 8' fence...I guess.

More tomorrow...I gotta to go work.