Bitter Digression

I wrote this comment in April.  I posted it and then I switched it to “Private” .  I felt it was too bitter and too accusatory to be left here.  But this is what I believe each and every day.  Moreover, I think that these feelings/observations are shared by many parent of children with disabilities. 

As I am writing this blog I often feel immobilized by resentments and regrets.  For the last three days I wanted to write about how Robert learned to be helpless. But this topic is not only complex but also loaded with  bitter reflections. They come from the fact that  too often and for too long I was not able to assure that Robert  was taught properly at schools he attended.  There is no doubt that I had times when I felt stressed by caring for Robert.  Yet the stress related to dealing with Robert’s schools was usually much higher. I experienced  times of relative contentment when many of my son’s needs were addressed properly and times of terrible hurt when I watched my son pushed back on a downhill slope of regression.

In this system parent has to be a  teacher, lawyer, negotiator, enforcer of the quality of education while at the same time he/she is kept blind  and has his/her hands tied.  It is an inhuman system. The emphasis on following the special education laws leads to emphasizing administrative paperwork  and not the classroom practices. That has a terrible  effect on children’s education as it leads to ignoring the significance of  the quality of the education delivery – teachers training as it relates to specific disabilities, application of proper methods, good curricula, and most importantly, the quality of education the future teachers receive at their graduate schools.

The  quality of special education received by students with disabilities can be, theoretically,  assessed by parents.  But who is checking the quality of education the future teachers receive at their graduate schools?

Teaching Robert is easy.  Teaching educators is hard but doable. Teaching people who teach future teachers? Impossible.


On Laundry and Learned Helplessness 1

Around his 11 birthday (+/-1) Robert began helping with  household chores.  He folded laundry and  put away dishes.  At first, he was only assisting me.  Later, he took over and didn’t allow me to help him. Whenever I tried to join him, he directed me to the computer desk,  ordered me to sit behind it and not interfere with his work.  He repeated, “Robert, Robert” to make sure I understood that all the work was his to do. I tried to leave something for him to do every day. When he worked, I didn’t have to watch him. He was busy, focused, and didn’t do anything inappropriate.  When he didn’t work, he had to be observed closely.

Around that time he started doing laundry at home. He put dirty clothes in a washing machine, pour a cup of a detergent, turned the machine on, switched the clothes to the drier, set the drier on, and took clothes out.

Except

1.He didn’t separate whites from colored or even black clothes.

2. He always put ALL the dirty clothes from a hamper or two into the machine.

3.When the washing machine stopped mid-circle because of the imbalance , Robert took dripping clothes out and placed them in the drier.

I had to intervene.    Whenever I heard the washing machine being turned on I ran to the laundry room, removed all the clothes (wet already), and told Robert to separate white and not white. Except he didn’t quite comprehend “not-white” and seemed to respond  only to the “white” part of the “not-white” phrase.  He made many mistakes I corrected.   Robert didn’t say anything, allowed me to correct him, but as soon as I left, he added all the remaining clothes to the washing machine.  This chain of events repeated itself a few times.   I always demanded that he separates whites and not whites. He always had problems  with that request.  I always stopped him from overloading, he always overloaded later. He didn’t protest, but as soon as he saw me disappearing behind the corner of a staircase, he returned to the laundry room and tried to “fix”  the laundry the way he considered it fitting.

Then one day he stopped putting clothes in the washing machine.

He continues to take dirty clothes to the laundry room.  He tells me to do laundry (“Laundry, laundry”) when his drawers get empty.  He still switches laundry from the washing machine to the drier.He still takes laundry out and folds it.

But for the last eight years, he has never turned on a washing machine.  Never.

With all my corrections, explanations, and instructions I convinced him that he was not able to  wash clothes.

And he believed me.

Could I do anything differently? Of course.  I could have prepared just one load of laundry for him to do each day, so he wouldn’t be able  to overload.  I could later add one or two differently colored items to the hamper, show them to Robert as standing out, and take them out with me upon leaving Robert in the laundry room to ” independently” initiate washing .

I wonder why I didn’t?

Importance of Little Words

There are long words like “multiplication” and “reciprocal” . Robert has difficulty saying them but understands their meanings.  There are also little words like “instead”.  Robert can say them, but is not sure what they mean.  When I advised, “Multiply instead of dividing” , it was the word “instead” that confused him.  Many speech pathologists  suggest to teach children with disabilities  those important little words  such as “First… Then, If, Before, After”  to give the children tools to mentally organize their space and time.  The word “instead” should join the list of such words.

The concept of replacing one thing with the other was unacceptable to Robert.  When he was younger he refused to wear new shoes or a new jacket. He screamed and tried to get out of his car seat  when I changed the route home.  He protested going on a different trail in the park he visited often  although in any new park he could follow any path. He had extremely hard time throwing away broken dishes or toys.  He didn’t want to buy anything new with a smart exception of food, balloons and bubbles. He , simply, didn’t condone replacing  one thing with another.

As  he grew, he became more flexible in accepting unavoidable substitutions.

Yet, they still confuse him. When Robert couldn’t follow my verbal advice on multiplying and yet was able to apply written algebraic  formula, I assumed that he didn’t know the word “instead”.  It is also possible that he knew the word’s meaning but was reluctant to replace a sign for division with a sign for multiplication.  He might perceived the very act of doing one thing (multiplying)  IN PLACE  of another (dividing) as utterly wrong.

Interestingly, when he saw written formula, his resistance disappeared.  With the support of the algebraic equation he divided fluently and soon mastered this algorithm.

What does the problem Robert encountered with the word “instead” tells  about language – thinking connection?  Can a person understand the essence (the act)  of “instead” without learning the term for this concept?  Does the knowledge of such words as “before, if, next, and instead” help elicit thinking or ‘only’ organize thinking?

Or, vice versa, does Robert’s dislike of replacing one thing with another results in diminished understanding of the word “instead”?

To what degree those of Robert’s behaviors which look like they were caused by  Obsessive Compulsive Disorder would decrease if Robert was familiar with the concept of “instead” ?

Those are important questions.  Since, however, I cannot answer any of them, I have to concentrate on finding a way to teach word and and the concept behind it.

As Robert applies written formula to divide fractions I interject the word “instead” every time he changes division to multiplication.  “Instead, instead, instead.”  Then I start the sentence and wait for Robert to finish, “You multiply….” Robert continues, ” Instead of…”

The hard to understand his approximation for “divide” follows.

Teaching While Learning How to Teach

In one of the previous posts I wrote about three steps in teaching Robert a skill.  The first step is the hardest to explain.  I don’t expect Robert to learn the skill.  I lead him step by step through the procedure, I talk to him knowing that he doesn’t understand most of what I am saying, no matter how simple they seem to me.  It is as if I asked him to look through the window of a moving train and notice an object we were passing by.  I wouldn’t expect Robert to notice any of the specific features of that object.  For now a realization that there is something out there will suffice. We will study it intensively another time.  That would be a second step. Next we would proceed to finding the same object in its different manifestations and various environments… In other words Robert  would generalize the skill.

When I described those steps  I omitted the most important function of the first step. Besides exposing Robert to an existence of something new, this step is for me to learn how to teach Robert. I observe Robert to know  which of the steps I am leading him through he can climb on his own, which words he recognizes, which he doesn’t, and what other support I will need to provide to assure learning.

There were times when  I skipped this first step.  I jumped into intensive teaching without strategic reconnaissance.  I expected Robert to learn something I didn’t know how to teach.  I was putting pressure on Robert not on myself.

What I am writing is not about a teacher being prepared  for a lesson (for instance by writing a lesson plan).  The lesson plan is an important tool, but for children like Robert it is just  like a hypothesis.  It doesn’t assure learning.  It only sets the stage for testing of the hypothesis.  The first step, as I understand it, is about checking the hypothesis. You don’t know how to teach before you start to teach and analyze responses – good and bad, complete and partial. The teacher has to learn from those responses and then develop  proper strategies, check them again, revise them again until he or she finds the best approach to teaching this specific skill to this specific student.

Just yesterday I tried to teach Robert to divide fractions. I had a lesson plan.  I had already practiced with Robert prerequisite skills like finding reciprocals.   I used simple words.  The words he knew – multiply , divide, flip the fraction over, reciprocal, reciprocal..

He couldn’t grasp the division.  That should be fine. The mistake was that I expected him to learn and consequently subjected him to the same method over and over.  That lead to more errors and repeated failures.  The failures lead to frustration and learned helplessness…

I shouldn’t pressure Robert  to learn during that phase.  I should be the one who was supposed to learn during that time. I had to take a breath and think about this failed attempt.

When I did,  I noticed  that although Robert understands when I say, “Multiply four by seven.  Divide 42 by six”  he doesn’t understand me when I say, “multiply instead of dividing”.  I observed that for Robert finding reciprocal to the separately standing fraction is not the same as finding reciprocal during division. I came to a conclusion that relying on language concepts that Robert used only in limited numbers of applications was not working. I understood that I would have to to experiment with different methods of presenting the new information.

In the end  I used abstract algebraic formula: “a/b : m/n = a/b * n/m .  This approach I would use with “typical” students. It seemed much too abstract for  Robert.  But since  I was only experimenting it was no harm in trying it. I introduced this formula not expecting Robert to learn it and use it.  I pointed it to him as if that was that object we had  seen from the passing train.  Somehow this formula seemed for Robert easy to follow.  Much easier than my verbal directions. I found a way to teach.  The phase one was over. Let’s move to the next.

One might point out to me, that even during a failed phase of intensive teaching I  was still learning how to teach.  That is true.  Yet I was also subjecting Robert and myself to unnecessary frustration by rigidly sticking to one approach instead of investigating its effects and being ready to flexibly adjust it.  I should have taken a breath, led Robert through the activity (just stopping it without finishing would leave negative residues which also should be avoided) as calmly as possible.  Then, I should have taken time and rethink the whole process in connection with everything I knew about Robert and started over.

Pica, Rumination, and Other “Behaviors” 2

I learned about Robert’s rumination during a meeting with Robert’s teacher and her clinical supervisor at  ABA school. Before that meeting I had never noticed that Robert tended to bring  the food back from his stomach, “play” with it in his mouth, and return it to the stomach.   I knew neither what ruminating was nor that Robert was doing it.   I assumed that it was a different name for pica. It took me a while to realize that the teacher and I were talking about different things. I credit the teacher for stating that the causes and treatments of rumination could be behavioral and/or medical. Robert’s school took upon itself to deal with behavioral aspect of rumination.

It was my responsibility to deal with medical side of rumination.  Yet I didn’t do anything about it until Robert was almost 18 years old.  The reasons/excuses why I didn’t take any radical steps to address this syndrome immediately are as follows:

1. The rumination seemed to (almost) disappear during Robert’s stay at ABA school. The way the school dealt with it worked so well, that I didn’t observe it at home. I forgot about it.

2.Rumination flared up during periods of Robert’s increased anxiety, specifically his second year in Collaborative program and the fourth year in Public School. Unfortunately, during those times I encountered  severe problems with both educational settings and needed to address the serious consequences of those problems. The rumination seemed less important.

3. During more visible periods of rumination I gave Robert 1-2 calcium tablets a day following the advice I received on Me-List.  Calcium (Tums) seemed to reduce the problems slightly. I had a feeling that I was “treating” it.

4.The gastroenterologist, who had seen Robert a few times for painful gases, constipation, pica, food intolerance (beside food allergies), and rumination, suggested endoscopy and colonoscopy to clarify medical picture.  I thought Robert couldn’t do it.

Well, I couldn’t .

Then I felt we had to.  The tests pointed, among other things, to acid reflux. Robert was put on omeprezole.  At first he received a stronger dose to  break the habit of “playing” with the food and to heal his esophagus.  Later the dose was reduced.  This treatment helped a lot.

Although I am not sure if we were able to do the tests sooner I regret not even trying.

The earlier diagnosis could bring Robert very needed relief.  It would also allow Robert’s teachers and me  to separate those “behaviors” that were reactions to discomforts of various degrees from those which had different causes.

If a teacher/parent  knows that a child is screaming and hitting his own face because he/she is in pain the response is empathy and understanding.   When the child does the same things because she/he wants to escape demands or  doesn’t accept changes to the environment the reaction is different and depends on a previously chosen strategy. (It might be based on Functional Analysis of Behavior.)

When I suspected that Robert might be  in pain but wasn’t sure of it, my reactions were chaotic and ambivalent and as such didn’t address Robert’s behaviors in any case.

On Language. His and Mine

A few months ago Robert was classifying vehicles. He was supposed to place  a picture of a vehicle in one of the three categories : air, land, or water.   I didn’t anticipate any mistakes.  Based on my previous experiences with teaching Robert, this activity should be almost mechanical.  I was using it only as a visual support for practicing speech.   While placing each object in a proper column Robert was expected to say for instance, ” Airplane goes in the air” . To my dismay, Robert was making mistakes.  Many of them.   I couldn’t understand. He should have known. Yet he didn’t. Why?  I decided to present Robert with just two categories . I removed “land” leaving only “air” and “water”.  No errors.  “Air” and “land” many errors.  “Land” and “water” no errors.

It was clear, Robert couldn’t differentiate between objects  moving through the air and those moving on land. Did he forget? I showed him proper answers and repeated the task.  No improvement.   Was I mistaken in assuming that he knew what vehicles could fly?  I decided to check if he could hand me all the flying objects. He could.  No errors.

I replaced the word “air”  with the word “sky” . Now the categories were: sky, land, and water. Robert classified all the vehicles correctly.

I understood my blunder.  I assumed that if Robert knew what flew in the sky he should have known what traveled through air.  Since he knew that airplanes flew in the sky he should have known that “air”, in this context,  meant “sky”.  But then I recognized that he also knew that the airport was on the land. So…

How confusing!

Pica, Rumination, and Other “Behaviors” 1

I don’t remember noticing pica (eating inedible objects) when Robert was a toddler.  It might be that  my  memory decided to ignore that fact. It might be that I simply didn’t notice pica as I was overwhelmed with many piling problems. But it also might be that this behavior  was not present yet.  I noticed this disorder when Robert was almost five.  Robert knew that he was not supposed to put inedible objects into his mouth so he tried to hide this habit and mostly succeeded.   I remember one of his teachers from ABA program telling me that she worked with Robert while the other teacher was observing and yet they both missed the moment when Robert put a piece of a crayon in his mouth.  By the time he was ten years old, Robert’s ability to conceal his habits became uncanny. At home I had not noticed Robert even touching winter insulation of windows and doors. I saw him looking through windows, nothing else. I became  suspicious when I found out that  many parts of the insulation were missing.   I could sit next to Robert on a sofa watching TV with him and  not notice that he was pulling fluffy stuff from the sofa’s pillow through a little hole along the seam and placing this cotton like substance in his mouth. Whenever I turned to him he was watching TV completely engrossed in the movie.  I finally connected thinning pillow and missing insulation to Robert’s pica and bouts of aggressions, self injurious behaviors, and very dramatic screaming.  I removed the insulation, I replaced the old sofa and the frequency and severity of those behaviors decreased dramatically.  But not completely.

There was another substance to blame:  silly putty.

Robert loved silly putty, craved silly putty, played with silly putty, and …ate silly putty. Silly putty seemed to be a great reinforcer.  Robert would do everything for it, read, write, count, and follow directions.  Moreover,he was playing very appropriately.  He  rolled, squeezed, and stretched.  So his teachers and I were not able to write such powerful  reinforcer off.  We  thought that we would just keep it under strict  control, limiting Robert’s access to it and observing him very closely.

We were deceiving ourselves.

We were no match for Robert’s ability to sneak any gooey substance into his mouth and then stomach.  We paid for our weak resolve by witnessing Robert in distress. He was in pain and we couldn’t do anything then about it.  Only when I decisively removed all silly putty, rubber balls, soft plastic materials from the house, Robert’s behavior improved significantly.

I wonder if constant reinforcing with candies, chips and juice didn’t contribute to this condition.  Constant reinforcing meant that there was something almost always in Robert’s mouth.  He might have gotten used to that feeling and craved it.  I knew that this schedule of reinforcing was not good for Robert’s teeth, but did it also aggravate or cause his pica?  

I also wonder why I didn’t know then that pica was often associated with iron deficiency.  From pediatricians to psychologists everybody assumed that pica is one of the autism related behaviors, so nobody suggested that I check Robert’s iron level.

And I didn’t.

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.

Someone

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.