Reconstructing Robert’s World

Robert, like Mary Poppins, never explains anything. We – relatives, teachers, and friends -have only his actions and reactions to allow us to construct a model of his world. Sometimes, what we discover is quite unexpected.

Whenever our family went hiking Robert followed the lead of his sister, Amanda. When she climbed on the rock, he had to climb on the rock.  When she walked on a trunk of a fallen tree, he had to walk on the trunk.  When Amanda jumped over the curb in a special way, he jumped  the same way. When he noticed Amanda swimming in a  butterfly style, he followed her with an almost perfect butterfly. Something he had never done before…or after.
When Amanda dropped her schoolbag, jacket, hat, and shoes on the floor, Robert got a message.   He run to the hanger, took off his jacket and his school bag of the hook and  together with his shoes threw them forcefully on the floor….

His sister was his role model.

And yet another day…

Robert with his arms  stretched upwards along the refrigerator’s door and a loud  approximations of the word “chip” let me know what he wanted.   Chips together with juice boxes were placed purposefully on the top of a refrigerator  to force Robert to initiate requests. In the ideal world, Robert supposed to approach me, pat me on the arm, and say, “Give me chips.”  But the world was not ideal yet so Robert screamed and banged on the refrigerator instead. Because  I was cooking or washing dishes and my hands were dirty or wet I asked Amanda,  at that time, much taller than her brother, to fetch chips for Robert. She did. She took chips and handed them to Robert.

But Robert refused to take them. He grabbed his sister’s arm and directed  it toward the top of a refrigerator as if he were saying, “Put it back!” .  She put it back and took a box of apple juice instead. The same reaction.  Robert again directed Amanda’s arm toward the top of the refrigerator. Robert was frustrated and he showed it.    Amanda was confused and upset.  Afraid that Robert’s exhibit of frustration would last much longer, I  asked Amanda  to go downstairs and turn on TV.   I didn’t want her to witness prolonged protest of the form and intensity  I couldn’t predict.  As soon as Amanda left, Robert calmed down noticeably. His arms, however,  were still in the same position, stretched on the refrigerator, aiming at the top. “Do you want chips?”, I asked.  He confirmed with his approximations of “Chips, chips, chips.”  I gave him a bag.  He took a fistful of chips and placed them in a bowl.  He calmly  gave me the bag back and started eating.  As if nothing happened.

I understood.

For Robert it  was not Amanda’s role to  give him chips!   She was not his babysitter!   She was not his parent!  She was not his teacher!  She was his pal, role model, sister! In Robert’s world sisters didn’t  do parents’ jobs.

Oh well, now they do.

Learning Robert 3

Robert doesn’t explain himself.  He cannot tell how he sees, feels, hears, smells, or tastes the world.  He knows many words but he is still not able to connect these words with himself.  They remain  mostly the domain of the outside world.  They exist to describe the environment around Robert.   I suspect that for Robert, the word “table”  exists  the same way the real table exists. Outside of his head.   Words  don’t seem to address his senses. The most troublesome consequence is the fact that he cannot state that something hurts and point to the painful part of his body.  It is my understanding that quite a few children with autism had this problem at some point of their lives  and some still might have.  I failed to teach Robert to tell what hurts, to point to the place that hurts.  And yet, from observations and subsequent medical diagnosis, I know that he was in pain many times.  The tragedy is, that  when confronted with a child who has tantrum, screams, hits himself, aggresses  toward others  but cannot tell or show what hurts, many caretakers and medical professionals  immediately assume that the screaming is a result of autism not of the pain.  Many years ago, just a few miles from our town, the young man with autism died because the people who supposed to take care of him restrained him forcefully while he had ruptured spleen. His reaction to the pain: screaming, “not cooperating”, not walking  was diagnosed “as typical autistic behavior”.  What was “autistic” about it was  this young man’s inability to communicate his pain to others. A mother of a teenager with autism told me how much time she spent at the emergency room trying to convince medical personnel that her son was seriously ill.  But since he couldn’t point or tell, since he acted in a way that appalled nice nurses and busy doctors, they came with a quick diagnosis – autism. Typical autism!  Luckily for the boy, the mother stood her ground. She stated, “He has had autism all his life, but he has never screamed like that before.” Another test was performed and hernia on the brink of rapture was found and removed.

Robert can answer many questions about pictures presented to him.  He can do it with correctly built sentences (but terrible pronunciation) , yet at the same time he cannot answer basic questions about his life.  He still cannot tell what hurts.

So, is there a way to teach that skill without actually causing pain?

Learning in Three Dimensions or More 2

I assume that typical children come to classrooms with some sort of knowledge related to the facts/skills they will be taught. The parents might have taught them to count.  The children observed the parents counting money or writing checks.  The children saw sale signs spread all over stores.  Moreover, when those children leave the classroom the same signs, symbols they were exposed before are now perceived in different context.  There are many micro elements in the environment that  allow typical students  to generalize and practice the skills by  adjusting  them flexibly to different contexts. THE BEFORE and THE AFTER of the  lesson are integral part of that lesson.

I don’t believe there is a “BEFORE ”  that prepares Robert for a particular lesson and I don’t believe that any  “AFTER” plays the same role in Robert’s learning as it plays in typical children’s schooling.

This is not exactly what I meant.  Robert might posses some relevant information, but his teachers (or I) don’t have the access to it, so we cannot use it to support teaching him.  And that  also might be the case with Robert applying the newly gained information to interpret his world. How appropriate is that interpretation and where it leads Robert can be impossible to understand.

I  was often afraid to start teaching something new to Robert, because I suspected that he had never had any experience which  I could use as a reference point and support his learning this way.

That led me to   the multilayered teaching.  Almost every day I teach Robert something he is not ready to fully (and sometime even partly) understand.  This part supposed to expose Robert to new concepts.  I do most of the talking (Although I do not talk  much as too many sounds  interfere with learning.) I show the proper answers and explain why they are correct.  I don’t ask questions, although often/sometimes  I leave a room for Robert to finish my answers. I don’t expect Robert to learn and use the skills later.  I do expect him to later recognize some of the same concepts as  vaguely familiar, more familiar, very familiar. So we might do the same or similar worksheets many times, but not on the same day. For reasons I don’t understand, doing the same page many times during the same session doesn’t improve Robert’s retention of the material, the way repeating it over a few days period does.

Then there are sessions for “typical” teaching/learning. We practice the same skills for a few days or a few weeks using  almost the  same approach with almost the same wording.

Finally, Robert practices using his newly gained knowledge to solve problems presented in new contexts and with a small changes in presentation.   That is why I use many curricula to teach the same skills. They present the same tasks in slightly different forms, in different order, or with different language and thus allow for flexible application and generalization of the skills.

Learning in Three Dimensions or More 1

Robert’s failure to learn math during five years  (between five  and ten) could be attributed to the discrete trials methodology as it was delivered to Robert .  I mean by that the teaching of separate facts/skills in vacuum without connecting them to other facts/skills.  I remember telling one of Robert’s clinical supervisor that teaching separate skills is like building higher and higher  towers from blocks.  The structures are tall but unstable and inaccessible.  Connecting those towers to each other would stabilize them both.  I remember another mother stating, during the short address to parents and teachers,  that it would be beneficial to know what the next step in learning/teaching should be. Not knowing what is the next step is not a problem confined to ABA methodology.  Moreover, with a good programing ABA is well equipped to address that problem well.  On the other hand in so many schools the classrooms for children with special needs are operating on randomly chosen and printed worksheets from internet.  The rationale is that those pages address the needs of diverse group of children with more flexibility than any curriculum.  This is a lie.  Those pages are “teaching” what a child already knows.  They are emblems of stagnation. Teaching should be a dynamic process with upward direction

Textbooks , workbooks, and teacher’s materials of well designed curriculum show the whole path.  They expose connection between NOW and FUTURE, present lesson and next lessons.

Saxon Math was not the first curriculum that was utilizing child’s prior knowledge to install understanding of novel concepts.  Yet Saxon Math was the first curriculum which did that with Robert.   By showing Robert that he can solve 8+9 by increasing by one the result of 8+8 Saxon Math taught Robert that he too, can apply what he knows to learn what he doesn’t know yet.

About Today 1

I call from the stairs, “Robert we have to work. Do you want to work now or later?” I hear soft and quick, “Later, later.”
“OK, I say, five more minutes.”
It still surprises me that he does come to the table after a few minutes.
From prepared worksheets or workbooks he chooses what he wants to do first.
Today, he chooses two geography worksheets about physical maps. Yesterday, for the first time we talked about elevations. That the different colors on the map symbolize different heights of landforms. I remind him of the word “elevation” we encountered in previous lesson. He practices saying it. It is hard for him to pronounce a word with four syllables. He has problems with pacing. In the past I asked him to make different shapes in the air with his hand as he moves from one syllable to the next. “Elevation” is a square word. He should draw a square in the air stopping in one corner for each syllable. But I am getting ahead of myself and demonstrate another movement – my hand is climbing imaginary four steps. I want to connect the upward movement with the meaning of the word while simultaneously practicing pronunciation. Wrong idea. Robert moves his hand up without stopping and the word gets scrambled into one unrecognizable sound. Should I correct? I am not sure. Doesn’t emphasis on pronunciation distract him from the worksheet? Doesn’t it reminds Robert, yet again, about his severe speech handicap and lowers his general confidence in his ability to learn? I don’t answer these questions but return to the worksheets. Robert might not be able to say the word “elevation” but he recalls its meaning in the context of colors on the map. And that would suffice for now.

Looking for Variables

Robert learned numbers (symbols,counting, names, order) by the time he was five years old. Soon after that he learned to add 1 to any other number.

And then for the  next five years he DID NOT LEARN  one math fact.

For five years! Nothing!

Not because he was not taught.  He was taught at school, he was taught at home.

School used not only flash cards, this antediluvian staple of American math education, but also cleverly designed program that involved cute counters and number cards.

I used counters, number line, two math curricula from SRA and yes, in my desperation, against my better judgement, and betraying my principles, I tried the  flash cards too.

Nothing worked!

Susan, the clinical supervisor of Robert’s program, sadly advised me to accept that Robert would never learn to add numbers.

Such outcome seemed both unavoidable and unacceptable.

The same week or month a parent on old ME-List advised another parent to use Saxon Math with her child.  Since the price was not prohibitive I ordered it without really knowing what I was buying.

Eureka!

The order in which  math facts were introduced seemed  counter-intuitive to me.  The first math facts to remember were additions of duplicates: 1+1, 2+2, 3+3 and so on.  It took Robert a week to add duplicates until 5+5.  It took him another week to memorize additions from 6+6 to 10+10.

Although it seemed so strange at first I quickly understood how much simpler  8+8 was than 2+4.  In the first addition there was  one number to remember.  So it sufficed to just learn that 8 was related to 16.  In the second addition there were two numbers.  You had to remember them both and that was hard for Robert. Which of the two numbers  is the  important one?  The first one or the last one?   It cannot be 4 because 1+4 is not the same as 2+4. It cannot be 2 because…

The second step in memorizing addition fact was to practice adding double plus one in the form: 1+2, 3+4, 7+8…

The problem 7+8 was written next to 7+7.  Since Robert knew the first fact and knew how to add one to any number he didn’t have much problem with 7+8.

Yet, that was just a mechanical approach.  Without seeing 7+7 first Robert was not able to solve 7+8.

I added new worksheets.  I wrote 7+8 first and 7+7 next so Robert would learn to use the second problem  as a support for the first one. Just looking to the right  was an important step.  Next, I wrote only 7+8 and next to it I drew empty squares.  Robert filled those squares with supporting addition 7+7 =14 and then solved  7+8.  In the  next step  I wrote just 7+8  and let Robert write himself   the next column.  Finally I wrote 7+8  but when Robert wanted to write 7+7 next to it I blocked the space.  He had to write an answer to 7+8 as he deduced it in his head without writing 7+7 on the paper.

So Robert knew how much was 8+9 before he knew 2+4.

Similar trick I used with practicing adding 2 to the number.

Someone (surprisingly a parent) asked me why I spent so much time on teaching addition instead of just introducing a calculator.

The answer is complicated. Of course it is nice that Robert can add, subtract, multiply and divide large numbers.  Typical people and peers with disabilities  who because of Robert  terrible problems with communication tend to  dismiss him after first encounter, might  realize that he has some relatively advanced skills.

I also believe that in this process Robert learned not just how much is 7+8 but also some strategies that he might one day apply to solving other problems.

However,  the main point of teaching Robert math facts was to LEARN how ROBERT LEARNS.  To find out what works, what doesn’t. During this process  I realized that Robert had problem with short and/or working memory. But I also discovered  that Robert learns through patterns.  Moreover, I  found out that even when he doesn’t have any visual support Robert  can still solve problems by using his mind.

Thank You, Ruth

Soon after my son’s diagnosis I met with many specialists familiar with autism.   What I noticed was that the specialists I talked to about Robert released only that information which I already had.  When I knew less, they told me less.  When I knew more, they told me more, but not more than I already knew.  The benefits of these appointments were that the specialists wrote reports.  They put all the information I had  in writing and legitimized it with their signatures with “PhD” respectfully displayed at the end of their names. That did help with schools.

But it was not enough for Robert.

Ruth A.  never met my son but, nonetheless, helped him the most.  She helped me to learn how to  help my son.  From one of the campuses of Indiana University she sent an internet list.  ME- List.  I think that it was  very hard for her to moderate the list where overeager and overstressed parents without any  other place to turn to for instruction and emotional support gathered  to learn, to share, and to vent their frustrations.  The ME-List was a life saver for me, because I, too, was overstressed, overeager,frustrated,  completely lost, and  bitterly lonely.

But most importantly I got concrete, useful, and usable information.  Information that allowed me to try new approaches, to move forward when I was trapped, to find resources.

Have I not heard from ME_LIST parents then about Edmark Reading Program (I believe it was not on the disk yet only in an immense plastic case) or such  SRA Publications like Horizon Reading, Language for Learning, Reasoning and Writing (SRA is now a division of McGraw-Hill) my son would not read, would not write, would not learn important language concepts.

Have I not heard about Saxon Math my son would not add numbers up to ten, and certainly would not add fractions with different denominators. I would not supplement his math program with Math U See   (for extra practice) or with Singapore Math (for clarification of concepts) have it not been for an advice provided by one of the parents on Me- LIST

Have I not heard about Fun Deck cards from Super Duper School Company and language workbooks from Great Ideas  for Teaching, my son’s language would be in much, much worse shape.  (Well, it is still very delay in the most important aspect of language and so we are still practicing every day with support from other sets of cards and other workbooks)

Have I not heard about Sensible Pencil,  Writing Without Tears, or Write from the Start my son would neither print nor write in cursive.

I heard about those curricula not from teachers and not from distinguished professionals.  I heard from parents on the ME-LIST.

I lost the track of the Me-List.   Maybe it emigrated to Facebook or Twitter. Maybe it doesn’t exist anymore.

But wherever you are Ruth, please, know that you did for Robert, a boy you had never met, more  than almost anybody else did.

Thank you

Utilization Behavior

I am glad that I learned about UTILIZATION BEHAVIOR when Robert was already 17.  For a few previous years I suspected that Robert’s behavior was controlled by his environment. I attributed this enslavement by the environment to Robert’s  severe language deficits.

Language gives flexibility.  Language allows for modification.  Language provides directions. Language is  a tool . Language is a shield.   But Robert didn’t have language.  Because of that,  Robert had to deduce all the relevant information from his surroundings.

When the bicycle was in the garage Robert ignored it.  But when the same bicycle was left in a driveway Robert “read” the message from the environment and act upon it.  He got on a bike, crossed the street, and rode alone to the church’s parking lot, the place where his father had taught him to ride a two wheeler.  He did it “only” twice as only twice the bike was left in the driveway by the member of the family.  Each time his sister, Amanda, took another bike and rushed after him.  Robert followed Amanda home without any reluctance.  Why should he resist?  He had already fulfilled the command expressed to him loudly and clearly by the placement of the bike in the driveway.

Robert didn’t feel urge to light matches when he saw them on a shelf, although he could reach and get them.  But when someone left matches  next to a candle he had to lighten it.   He “utilized” the matches and the candle the way they should be used. Still,  the candle was near the curtains, the curtains near the bookshelf.  Although  the fire was mostly extinguished  before firemen arrived a couple minutes later  the smoke and the uneasy feelings lingered longer.

It became obvious to me that  the environment was controlling Robert’s behavior.  The question is, why didn’t I become aware of that fact  before those dramatic events took place?

Well, I didn’t feel the need to analyze everyday, repetitive events.  If they struck me as unusual I found it sufficient to rely on a few artificial explanations based on stereotypes about autism .  Moreover, Robert had complex relations with his environment.  He was a guardian of his surroundings.  He had to maintain it by bringing it to the previous balance when something was disturbed. For instance, empty space on a shelf over the coffee maker was calling on Robert to give it back the missing phone.  Objects out of place were requesting that Robert puts them back in the right drawers, closets, cabinets,or shelves. Those behaviors could be considered just “tiding up” or… signs of obsessive compulsive disorder.  Only after incidents with a bike and matches I view them as the examples of Robert serving his environment.

If I knew more about utilization behavior when Robert was younger I would have considered it a  result of the frontal lobe damage and felt unable to alleviate it.

Luckily, I didn’t know.  So Robert and I spent  a lot of time squeezing new words between Robert and objects that surrounded him.  Those little words “up, under, first, later, if, then” and many other did what words supposed to do.  They imposed a new structure with passable roads, tunnels, and bridges over Robert’s environment.  They showed that he could move between any two objects, modify them, or even … ignore them.  Those little words  considerably lessened the pressure coming from the environment and ( to some degree) liberated Robert.

JABA and Sundance Publishing

Journal of Applied Behavior Analysis is a drab looking magazine published a few times a year. Between two unappealing covers there  are many articles written in  a relatively precise but nonetheless hard to follow  jargon which only the most dedicated BCBA (Board Certified Behavior Analyst) can tolerate.  The Journal is swarmed with  graphs which by demonstrating relations between well defined variables  convey the message that the journal is indeed a scientific one.

Books from Little Red Readers, slightly overpriced series published by Sundance Publishing, are short and colorful.  The sentences are simple.  The same sentence pattern is repeated on at least seven  pages.  The last page usually carries sentence of a different construction for a ‘dramatic’ ending. In a non-nonsense approach the publisher didn’t  bother with  title pages or tables of contents.   Title pages are redundant since  they carry the same information which was already presented on the cover.  There is no need for tables of contents for books that have only 8 pages each. No, the books from Little Red Readers series cannot be considered scientific.

One lazy afternoon in 1997 a few issues of JABA and many Red Little Reader books were spread on a table.  Robert and I were sitting on the sofa and reading three of the Little Red Books.  It went so well.  It was a very satisfying (to me) endeavor.  Robert demonstrated proper decoding skills.  His comprehension was  correct.  The sentences in which only one word kept changing from page to page helped with pronunciation and with mastering a language concept.  After we finished, Robert got up and started running around the large room while I relaxed on the sofa as proud of Robert’s reading accomplishments as if they were mine.

I wanted more.  More satisfaction, more teaching, more learning.  More, more of the same since it went so well.

So I called to Robert to bring another book from the table.  “More reading Robert.”  “Bring a book from the table.”  “Bring another book.”  “One more book.”  I kept on asking.  I did that instead of picking a book myself because I wanted Robert to follow verbal directions.  (Well, well, well… Not exactly.  I just was too lazy to get up.) I knew that Robert understood directions I had given him.  So why was he still circling around the room approaching the table and turning away from it?

I kept repeating, “Bring another book.  Just one more book”.  Robert got closer to the table, walked around it twice or three times, looked at the books.  Although I was watching him closely I didn’t realize that he was slowly concocting his solution to the request I made. He didn’t want to read, but he wanted to comply with my demand.

And so…

He grabbed an issue of JABA and threw it to me with a sly smile as if he were saying, “Read Yourself”.

Could he really develop such a response or was it just an accident?  Despite all the details confirming that it was indeed a purposeful action I still had doubts.  So, I  called to Robert, ” You want to read JABA? OK, come here, let’s read.”  I opened the Journal as if I meant to carry this threat.  Robert’s eyes widen from unexpected horror.  He made a loud “quack” sound, turned around, and sought refuge in the bathroom.

I have never read even one complete article from JABA.  My mind was fixated on finding methods of dealing with disturbing excesses of behaviors and equally troubling deficits. I needed short answers, concrete ideas. I couldn’t force my brain to deal with painstakingly constructed definitions of variables or multiple graphs.  Yet, I still consider JABA goldmine of ideas which were clearly presented in summaries preceding each article.  These summaries described clever designs of  educational procedures.  I remember that I was so impressed by the abundance of solutions to many problems I had already encountered that I called JABA and suggested that the journal publishes one issue with just the summaries . Somehow the person I spoke to didn’t seem trilled by that idea.  Maybe such publication would undermine scientific character of the magazine. It is a pity as it demonstrates a chasm between research and everyday classroom practice.  Very little of the educational research permeates the special education classrooms and that is not entirely the fault of teachers or school administration.

I am not sure if the books from Little Red Readers (Blue Readers and Green Readers) entered many special education classrooms.  They certainly had been present in our house for many years.  I purchased over 50 books.  Robert read them all many times.  Finally, I donated most of them to Big Brothers Big Sisters. I felt at that time that they already had completed their job.  Now, I am not so sure.  I think I could use them yet again to practice pronunciation.  Repeating the same sentence structure with one exchangeable element would certainly ease Robert into speaking in sentences.  Or maybe not. You never know….


Quest for Language 4

I have already written about  a few easily definable moments in Robert’s life when he made so called “breakthroughs”.  He generalized imitation of gross motor movements; he said first word “pop” or first part of a word “o” ; he understood computer voice giving him simple directions; he understood human voice as asking him to point to one of two objects.  Yet in times between any two of the  steps forward some changes were brewing.  Except, it is much harder to document, pin point, or describe  what it was and when exactly did it happen.   One might think that getting  data from Robert’s school that documented every single response would provide some clues.  Unfortunately, it is not so.  Data from discrete trails documented only what was happening during discrete trails. Not outside of it. And that is one of many reasons why the collected data provides little information on formation of language.

But  memory is also unreliable. It coils itself around a few events that left  visible marks but somehow ignores everyday boring developments. There is no time card to pin point when a new concept entered the mind. At best  we can say that something happened before or after something else and thus we can detect the sequence.

I don’t claim that Robert learned/knew/possessed the skills listed below at the times I assigned to them.  The approximate times I wrote in parenthesis tell  when  I REALIZED that Robert had those abilities.  But then, those abilities do count only if another person can confirm their existence.

1. Robert could hear. (1year)

2.He could crave beautiful sounds. (18 months)

3.He learned that one sign from American Sign Language ” more”  gave him what he wanted  (mostly bubbles)  (around his third birthday)

3a Robert learned to imitate other people’s gestures (3 and 9months)

4.Robert was able to interpret many environmental sounds:  That his father  walking  upstairs; that mother’s car passed by without stopping;  (2 years old, 3 and 4)

5.He learned that producing a specific sound can result in a sweet and sour taste of a lollipop, or make the door open, or bring the box of juice from the top shelf straight into his hands. (between 3 and 4)

6.Robert learned that if I said something with a specific tone of voice he supposed to do something. (Around 3 )   He didn’t know what exactly he should do, but he knew it was something.  Luckily for him there were only three or four tasks I asked him to perform at that time: close  the front door or refrigerator door,  put the bottle of grape juice back in the refrigerator,and pick up something from the floor.

I do remember being with Robert in the kitchen and asking him to close the refrigerator’s door after I took something out of it.  I remember Robert backing off into a hallway to check the main door. It was closed.  I remember him looking at the floor and picking  a small breadcrumb.  I remember him scanning the table to check for large bottle of juice. Finally, I remember him closing the refrigerator door.  I remember that because, at that time this chain of actions proved to me that Robert didn’t have “receptive” language.  He scanned the environment for cues that would allow him to decipher the sounds I produced. He already decoded my voice as a request upon which he should act, but for the specifics of the request he referred to his surroundings. He understood my voice as a request, but he didn’t decipher the meaning of that request.

At the time this happened I interpreted this development as a negative one.  It showed Robert didn’t understand me. Now, I realized how positive  it was.  Robert understood sounds coming from me as a request upon which he should act.  He just didn’t understand the details.  That was a step toward formation of language.  Moreover, he was able to differentiate the tone of voice with which I expressed demand from all other tones I used for different situations.

Have I realized then that this was the step in right direction  I might  utilize this skill better and build on it.

7. Robert followed commands given by computer voice (around his 4th birthday).

8. Robert discriminated aurally between two labels (4 years 6 months)

Now, at twenty, Robert still struggles with language.

He could do so much better if…

He could do so much worse if…

The unpleasant thing is, I don’t know what those “ifs” are.