Explain This to Me.

One of the residues of my desperate adherence to Applied Behavior Analysis was the silly conviction that there is no point of explaining anything to Robert.  It is possible that this conviction was a result of a faulty reasoning but, nonetheless, I assumed that I should only apply behavioral methods across the day.  Firstly , it was simpler.  I didn’t have to guess what Robert wanted.  Secondly, since Robert never explained  anything to anybody how could he grasp my explanations? Of course, I heard of “Social Stories”, but  they existed in the parallel universe of different approaches to children with autism.  Robert’s school didn’t use them with Robert  so I didn’t either.

Robert was ten or eleven years old.  It must had been the summer, because days were long and evenings warm. And it was such a warm ,summer evening when Amanda, Robert, and I returned from a grocery store.  Robert seemed “tense”, so I asked him to go to the back yard and relax on the hammock.  Amanda and I carried shopping bags to the kitchen. I asked Amanda to stay in the backyard close to  Robert.  Just in case.  I didn’t finish unpacking the groceries yet when Amanda came back complaining that there were  many mosquitoes outside.  She  had asked Robert to come home, but he didn’t want to. I ran to get spray, but couldn’t find it. I went to the backyard and told Robert to come home. I said that impatiently in this “do it or else” kind of voice.  He sat,  grabbed, and pinched my arms.  Then he hit his own face with both hands.  Mosquitoes were swirling around.  With all the TV’s warnings about  cases of diseases caused by mosquitoes I couldn’t let Robert stay.  So I  picked him up from the hammock. I am not sure if I carried him, dragged him, or if he walked behind me at least part of the way. I don’t remember how we got home.  I remember that Robert was  unhappy.

There is nothing he despised then and despises now more than being confused.  He was confused because  I confused him.  I told him to relax on the hammock and then told him to go home. Moreover, I said  that in this obnoxious tone of voice that indicated to him that he had done something wrong.

I understood much later  that Robert was not upset because he wanted to stay outside.  He was upset because he couldn’t do what he was told to do – stay outside on the hammock.  He wanted to follow directions but he couldn’t follow contradictory directions. 

He was upset for quite a while.  He made grunting noises interrupted by louder screams.  He kicked the bed he was on. Meantime, I asked Amanda to help me make a short book about this incident.  As the noises of disgruntled Robert still were coming from his bedroom Amanda and I quickly concocted a book that described what had just happened.  Amanda made a great drawings of Robert on the hammock and mosquitoes menacingly approaching him from all sides, mother running to his rescue with arms in the air, a person suffering from mosquito’s born illness.  This “creative” improvisation took us no longer than 15 minutes. It was not a classical social story telling what to expect or what is appropriate behavior in a particular situation.  It was a story in which I explained myself to Robert.  We both, Amanda and I,  explained to Robert his own reactions. As we read this book together, Robert looked at us in a way he had never looked before.   He was grateful.

Don’t Blink

Amanda stared at the duck.  It was hard to deduce from the way the duck was standing if it had one leg or two.   Amanda wanted to figure that out.  Jan looked at the sky thinking about a possible solution to his programming problem.  I glanced at the circle of people gathered a few steps from the fountain.  They  seemed to be tourists but  not exactly.  I tried to sort out this dissonance and gazed at the group a few seconds too long. When I turned my head back toward the fountain, Robert was gone.

We were all in Boston Common on a warm weekend day.  All three of us knew that we had to watch Robert closely. He had insatiable appetite for bolting. He could wiggle out of any grip and run. Even Amanda, seven years old at the time,  knew that we had to watch Robert. We watched him.  Closely.    We were spread strategically around a fountain.  Each of us precisely 120 degree from each other.  Robert was running around. We did watch him.

Except for these few second when Amanda looked at the duck, Jan looked at the sky, and I looked at the circle of people .

Robert was gone.

It seemed impossible, illogical, unexplainable, and completely unbelievable. We all watched him.  At least one of us should have noticed something.

“Robert! Robert!”  I screamed knowing  Robert would not react. I screamed  to alert everybody. Soon, a young man approached me asking what had happened.   He didn’t have uniform but he had a police badge.  He notified park rangers. I described Robert to him, but couldn’t remember, at first, what he was wearing.  My first thought was to check the playground. I suspected Robert might remember it from his trip there  18 months before.   But Jan and Amanda decided to run around park’s border to prevent Robert from crossing any of the busy streets surrounding Boston Common.   I was told to stay in one place and wait.  I waited.

Someone told the policemen that a boy matching Robert’s description walked with a man just a few minutes before.  Luckily, that man’s clothes matched Jan’s. No stranger was holding Robert’s hand. Relief.  A few minutes later a loudly talking man approached me.   I thought he knew something but he was saying disturbing things.  The policeman asked him to leave. Amanda and Jan returned.  They ran around the perimeter of the park and didn’t see Robert.

Just  then the policeman told me that a parent called a  park ranger about a boy who was running around the fort like structure of the playground. This parent observed that  no adult was watching this boy.  A few minutes later, we were asked to come and get Robert.  The young park ranger was not able to hold his hand and walk with him to us.   Robert wiggled every time in his own way.

I held his hand tightly.  He was walking as if nothing had happened attempting to skip every few steps. Many toddlers dressed like little ducklings  walked in opposite direction with their parents.    It was a day for the famous Boston’s  Duckling Day Parade.

Robert  seemed happy. His joyful face confused the policeman who was convinced that the  children ran away because  they were unhappy with their parents. To dispel that belief  I said the thing that I have regretted ever since.  I said, “Oh no, he runs because he has autism.”

I still don’t know why Robert eloped so many times when he was younger.  I might make  assumptions about causes  of some of his escapades.  Those assumptions might be  wrong, but they are still better than using  “autism” as an explanation.

That night I was awaken by Robert’s cry. Many times before that night he screamed  from anger, discomfort, or pain, but he has never  cried like  that.  Like a person lost in a labyrinth.


Reconstructing Robert’s World 2

I can imagine what went through a young teacher’s mind when Robert tried to prevent me from entering his classroom. ‘She must be a terrible mother if Robert cannot t tolerate her presence!’  The first time it happened I was both confused and hurt.  Almost as hurt as that young teacher who came for the first “home visit”  and Robert tried to stop her from entering out house. Robert’s reactions were not an expression of his emotional attachment or lack of it.  Robert’s reactions were caused by his strong belief that people and spaces do not mix.  I didn’t belong to his classroom.  The young teacher didn’t belong in our house.

The same principle ruled who could take Robert to McDonald’s or Applebee’s restaurant. Juan and other respite providers could take Robert to McDonald’s.  Parents’ couldn’t. We could take Robert to Applebee’s and other restaurants.  Robert didn’t mind a new restaurant as long as the people belonging to different spheres didn’t mix there.

Once we invited Robert’s teachers with their husbands to a Ground Round (I think) restaurant to  celebrate Robert’s birthday. As soon as  Robert noticed his teachers entering the  restaurant’s  room the complete disaster ensued! It couldn’t be fixed.  My husband had to take Robert home.

It took me a while to understand how rigidly Robert assigned people to particular space or activity.  He didn’t do that when he was 3 or 4 years old.  He started doing that around his sixth or seventh birthday.  He tried to organize people and places with his own logic and rules. When those separate worlds invaded each other it was the end of both worlds.

For a long time I believed that there was no point in trying to understand Robert’s motives.  Since the motives were almost impossible to understand I should have been concerned with visible, measurable behaviors and their management.

I am not so sure any more.

In the end, understanding how Robert perceived his world/worlds allowed me to take steps to change that perception and  show him that people and spaces  mix, often for the better, so everybody can take him to McDonald.

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.