Discovering the Path of Microsteps

The skills were  simple. Basic really.  There was nothing to them.  They were so simple that the very idea that they should be taught seemed ridiculous.   The children either had  inborn potentials to demonstrate those abilities at some point of their development or did not.  If they did not,  nothing could be done.  Although the teaching would help a child to go over some rough surfaces, or climb a few steps up, at least the path for teaching and learning was already cleared. Everybody more or less knew  what to expect on the developmental curve.

I did not.

When Robert was two and three years old, I couldn’t “teach” him even one hand movement from any of  the children’s songs and finger plays.  I dutifully learned them all and tried to pass my knowledge to Robert.  I sat on a chair, he sat on a table.  We faced each other.  It had to be this way as in any other arrangement, Robert would run away after  the first few notes.  Somehow, he did not even try to escape from this position. He appreciated my singing and  all the silly movements of my fingers, hands, and arms.   He smiled all the time.  He was happy to participate but only as long as I kept moving his hands.  He repeated neither a syllable nor a gesture. He kept placing his hands in mine expecting  me to move them accordingly, but he did not move them himself.  He smiled  while I led his hands  through the steps taken by Eensy Weensy Spider.

I used the same  tricks that the generations of mothers and  nannies created and mastered over the ages  to help their charges appropriate new abilities easier and quicker:   I went faster.  I went slower.  I stopped in the middle of the song, as if I  needed help remembering next word and next gesture.  I stopped just before the last word and the last movement so Robert had an opportunity to fill the blanks. I exaggerated.  I whispered.  I changed the pitch.  Robert, still smiling, did not show any inclination to initiate, continue, or finish the finger play.

It was after the first application of  Applied Behavioral Analysis methodology in its most rigid and plain form – discrete trials – when Robert for the first time learned to imitate my singular gestures such as clapping, spreading arms out, touching nose.

Each skill was taught separately and with heavy reinforcement.

Saying,”Do this”, followed by a gesture to be replicated by Robert.

Helping Robert to copy the movement with some level of prompting.

Reinforcing him with a piece of candy and words, “Good boy.”

Repeating the same procedure again.  And again,  And again

Of course, there were small variations in regards to delays, level of prompting, schedule of reinforcements, but the idea was the same:  to teach the most simple, singular skill.  Not a skill in connection with other skills, not a skill that changes depending on circumstance but one that is clearly presented, easy to follow, and doesn’t depend on anything else but demand, “Do this” accompanied by a model.

Our goal was not to bushwhack through wilderness.  Our goal was to carve a new trail. To do so, we had to slow down and work on finding  ground for every step our feet would have  to take.

1.In one of the previous posts, I had already made a distinction between TEACHING IMITATION  and TEACHING SEPARATE  GESTURES . I cannot stress it enough that the purpose of teaching clapping, touching nose, tapping on the table is mainly to provide a repertoire of tasks to choose from while teaching imitation.  That mean that the child has to attend to the stimuli, and differentiate between the demonstrated movements imitating only what was shown, and not the whole bank of learned gestures.

2. Although I consider discrete trials crucially  important, I also believe that when overdone, over-repeated, and not subjected to regular check up (Something different from collecting all the data), they can have a stifling effect on overall development. Discrete trials are  powerful tools, but only when applied smartly.

As of Today 2

I have not written for a few weeks.  I have a good excuse.  I was  filling forms for hearing to be held at the  Bureau of Special Educational Appeals.  It was a lot of writing. First, more than 20 pages long draft.  Finally “just” ten pages.  Still a lot.  Even worse, I had to channel my pain and disappointment into calm stream of rational arguments.  That was very hard.  Such exercise can never be fully successful as it is tainted by mixed emotions, suppressed anger, and confusion.  The process, which has hardly even began,  drained me already.  Even worse, my stress  comes up during my daily work with Robert,  showing itself up as flares of impatience.

So, we work less.  I take more breaks.  Still we go on.

So just to keep it down to the earth, I will write about our daily work in the month of September.

We finished reading “More Nonfiction Reading Comprehension Level 3 by Top Readers.  Each day, one short text – one paragraph long. We continued that from the summer when we had completed level 2.  The two levels don’t differ much in the complexities of the texts.  Maybe the vocabulary is slightly more advanced.   As I said before, the texts with pictures are like postcards from all over the world – including its past.  It is as if Robert and I were looking through the window of the moving train noticing changing pictures. Sometimes we  use IPAD to search Internet for additional images. The only effect I am counting on is for Robert to realize how diverse and rich is the world. In a way I am learning that myself.
I think that this might lead Robert to accept more changes, and to better adjust to new situations/places, events  and …. something else I cannot clearly name.

Robert has been working on the first grade level vocabulary workbook by Sylvan Learning.  The purpose is for Robert to independently complete tasks.  I go to the kitchen, while Robert reads and follows simple directions.  Still, when he is not completely sure, he stops and waits for me,  unable to move and risk an error. But he still makes errors. Just this Wednesday he was supposed to circle words representing animals. Two such words were mixed with two other words in each of the four lines.  Robert circled all the animals.  That is great! But he also circled one more word in each line. That word did not name an animal.  For reasons he won’t explain, he assumed that he should circle three words in each line.  He chose two animals and the word he was the least familiar with.

Robert wasn’t really working on First grade vocabulary.  He was learning to trust himself, and believe in his own knowledge.  The first grade vocabulary seemed like a good tool for learning just that.

I make pages with operations on fractions.  Robert still cannot subtract mixed fractions, but he can find the difference between whole number and a mixed fraction.  At the same time, however we work on first and second grade level, so-called,  “word problems”.
It is not getting easier.  Robert learned long ago that “more” means adding, and he cannot understand reasons why expression “how many more” requires subtracting.  I use ideas from very much maligned “Everyday Mathematics”. I draw rectangles that extend each other to represent addition and rectangles placed next to each other to represent subtraction.  I struggle to explain those concepts.  Robert struggles to understand. But those drawing do help…. Well, sort of.

Everyday, we also do a few pages from the No Glamour Grammar workbook from Linguisystems.  We are on page 280 of 400 page book.  There are only few, basic grammar concepts introduced there in a very easy format.  Still, for Robert everything is much more complicated that it seems.  There are pages he can do on his own, almost automatically, and there are pages when we have to work together building sentences.
As we go through those pages Robert practices his short and working memories, learns to connect words to his experiences while building sentences, and, maybe, he also learns grammar. It helps that many of the mechanics Robert knows already.  He knew most of the past tense forms of irregular verb but he still is not sure what verbs are.  To help him find verbs among other words I ask him to choose the word that can finish the sentence: ” I can…”.  To find nouns I want him to finish the sentence “I see…” It is not 100% precise but it will suffice for now.

Still, most of the time we spend on language.  But to describe that I need to write another post, two, or more.

Tricking the Mind to Use Itself

In many posts written before this one, I indicated that Robert gets a lot of cues  from his environment.  He believes it is his responsibility to maintain the environment as unchanged as possible.  In the last few years, however, he began accepting the fact that the words, when introduced  clearly and with advanced notice, have the power to alter the order in space around. Still, in his actions,  Robert relies heavily on what he sees and only slightly on what he hears. When he sees that the roll of toilet paper ran out, he immediately replaces it with a new one.  When I tell him to replace the roll, he takes time to process my request.  I have to repeat  it a few times, before he checks the bathroom to confirm that he understood me properly, and only then he fetches a new roll.

When we practice language skills, this problem presents itself in a dichotomy: written versus oral. I noticed, more than six years ago, that when Robert had to fill blanks in written sentences he couldn’t retrieve proper words from his mind.  When, however, he had a bank of words in front of him, he could fill the gaps by choosing properly with only occasional error.  We worked on his ability to make free associations by drawing webs of words associated with the main word.

It was very difficult for Robert.  We were sitting in the dinning room and Robert tried to name a few objects that could be found in the kitchen.  We got up and looked inside the kitchen, named a few objects, and came back to the worksheet.  Robert still had difficulties. As if he could not carry those words in his mind from the kitchen to the dining room table – seven steps altogether.  In the end, I wanted Robert to just memorize names of four objects found in the kitchen.  Except, he couldn’t memorize them.

I made a list. He read it a few times but did not retain any words.  I read with Robert all four words: sink, oven, table,and  spoon touching each word as we read.  Then, I covered the words with my hand, but proceeded to touch this part of my hand under which the word was hidden.  Surprise, surprise! Robert named all four words.  He didn’t see them! Still, he knew they were there.  I don’t understand this mechanism, but it seemed that as long as the words were somewhere on the outside of his brain (on the paper, under my hand), he could refer to them and remember them even when he didn’t see them. Just knowing their location sufficed to recall them all.

After we practiced this way many times, he was able to remember these words (and other) without any additional support.

Yesterday, I encountered another problem.  As we were practicing with No Glamour Vocabulary Card, Robert had difficulties choosing from four words the one which didn’t belong in the set.  I gave the verbal direction, “Which one is not a furniture: table, chair, pencil, or sofa?” Robert was lost.  He clearly couldn’t follow such a long chain of words and analyze their relationship at the same time.  Similar difficulties he exhibited with other sequences. This  and the following example are consistent with defective working memory, I believe.

I asked him to write down all the words as I was saying them.  When he did that, he was able without any difficulties to choose the correct word.  We did that again with a few other sets of words.  He was always right. When he saw the words, he was able to perform well.

In next step while I was reading the words I drew one horizontal line for each word but left all of them empty.  As I asked, ” Which one is not a vegetable: carrot, apple, spinach, onion”,  I touched each line as if I suggested the place where each word was supposed to be.

With slight delay, Robert touched the line assigned to “apple” and said ” an apple”.

I am not really sure what I was doing there.  I hope that  as I was drawing these empty lines, or was covering the list of words I tricked Robert to use his brain in a new way, as if I was helping to create  some new templates for thinking.

In one of my early post, I wrote how I used the fact that Robert knew how to add double numbers (8+8 for instance) to teach him add doubles plus one (8+9).  I got the idea from Saxon Math, but I went a step farther than the authors of the curriculum did and I used empty squares as the last step.   Those empty squares, just like empty lines might have helped Robert organize his abstract thinking and form concepts.

Maybe

Overcorrection

In the first month of 1996 Robert (a couple of months short of his fourth birthday) started dumping the  buckets of Lego blocks on the floor. I didn’t know then and I don’t know now why he was doing that.  There was no way he could explain me the reasons behind his actions and there was no way I could persuade him not to do that.  Although at that time, Robert was already receiving ABA therapy,  I either didn’t hear about Functional Analysis of Behavior or considered it inapplicable. Just month before I had broken my leg on the small patch of ice and  still little uneasy I treaded lightly around the  house.  Hundreds of small blocks were not a small nuisance.  Functional Analysis of Behavior takes a lot of time as it requires careful observation of what has happened before the behavior (Antecedent) and what happens after (Consequence) to understand this ABC’s pattern (Antecedent, Behavior, Consequence).  That would also mean that the behavior would need to repeat itself many times before FAB could be completed and its recommendations applied.  Based on the circumstances in which these incidents happened it was impossible to determine  Robert’s reasons.

He did it once when I was washing dishes in the kitchen and although I observed him through the opening in the wall, I didn’t interact with him.  So it could be that Robert wanted my attention.

Once it happened during his discrete trail session where almost too much attention was paid to him.  So it could be that Robert wanted to escape the drills.

Since at least once I saw him jumping excitedly after blocks hit the floor with rattling noise, it also could be that he got sensory reinforcement.

No matter what was behind this behavior, it had to stop.  The sooner the better.  When Robert dumped the blocks in the presence of his therapist, Evelyn, she decided to use overcorrection – which simply meant that Robert had to clean up the mess he made.  Of course, he didn’t want to.  Evelyn went on her knees.  Robert got on his knees.  Evelyn held Robert’s hand in her hand.  Slowly and with great effort she picked up all the blocks using Robert’s uncooperative hand.  As I remember her and myself neither of us held Robert, but we were bent over him closely enough so he couldn’t swing his head and hit us with it.  It was something he was pretty skillful at doing.

As soon as Evelyn and Robert finished, Robert got up, grabbed the pail and  deposited its content in front of my feet. So it was my turn to do what Evelyn just demonstrated to me.  Except it was much harder than it seemed. It was especially confusing to know the exact distance – not be too close to Robert and obstruct his movements and not be  too far as that would  leave enough room for Robert to swing his  head like a weapon.  After all blocks were  back in the bucket, Robert calmly returned to his desk for another session of discrete trails. While I felt a little shaken by this experience, Robert didn’t show any sign of distress.

Yet, as soon as Evelyn left, Robert ran for the bucket again and aiming for the biggest impact dumped the blocks next to me. So I repeated my previous actions, although it was much harder without Evelyn watching me and giving me pointers.  I was afraid that I wouldn’t leave him enough room to move, so I gave him too much room and paid for it.  Still, we finished.  The last few blocks Robert picked up all on his own, motivated to quickly finish the task and do something else.

That was the last time he purposefully dropped the blocks or anything else on the floor.

Well, not exactly. It was the last time for the next eight/nine years.  When he was almost 12 years old, new waves of destructive behaviors like a tsunami kept on washing whole boxes of math counters, books, crayons  from  tables, desks, and shelves. They were coming sporadically but with full force over a period of 6-8 months.   Robert still couldn’t explain anything.  This time, however,  we wouldn’t  dare to use overcorrection the same way we used it before.

He was too big, too strong, and too angry…

Still, for over  eight years following the winter of 1995 Robert never purposefully dumped anything on the floor.

His experiments with breaking Christmas ornaments, I described somewhere else on this blog, belong to a different category.  They were clearly motivated by Robert’s need to research both gravity and the hidden lives of spheres.  

Talk. Any Way You Can

Robert is ordering his lunch at McDonald.  Not without difficulties, desperate repetitions, and partially futile efforts to spell words “coke” and “fries” he managed to order chicken nuggets with fries and coke.  Now he has to ask for sweet and sour sauce.  He does ask.  A few times. But yet again, five syllables of, “Sweet and sour sauce.” are wrung into a knot  of one undecipherable sound.  I suggest spelling and Robert starts,  “S, w, e..”.    The young woman at the register doesn’t make a connection.  She repeats “s” and “w”, but still doesn’t know what Robert wants.  Robert spells again.  This time  he adds something new.  As he spells, his fingers seem to write the letters in the air.  The young woman has an idea.  She gives Robert paper and a pen.  Robert writes “sweet” .  Now she knows.  She gives Robert one tiny box of the sauce.  Very loudly and clearly Robert protests “TWO, TWO, TWO”.  He gets two packets , grabs them, and leaves.

The strange thing was that Robert was happy.  I expected him to be irritated, stressed, even humiliated.  The process of ordering simple meal took so long, so much effort, so many trials, and so many misunderstanding that it had to be draining.   I am not sure if it was worth to force Robert to order by himself.  At some point I even told him that if he doesn’t order by himself we would have to leave McDonald without eating.  I am not proud of myself, although the effect of that mean warning had two positive consequences. On one hand it convinced Robert that he couldn’t turn to me for help in ordering and so he doubled his efforts.  On the other hand, the young employee felt much more empathy toward Robert.  Not only he had difficulties speaking but also had a mean person with him.  So she decided to help him tell her what he wanted. She, too, doubled her efforts.

I felt confused, humiliated, and guilty but Robert was happy!  Why?

Because he managed without my help?

Because he was proud of the way he pretended to write ?

Because someone on the other side of the counter made an extra effort at communicating with him by giving him a pen and paper?

Or maybe  he was just glad that the ordeal was over and he got his chicken nuggets, fries, coke, and  two packets of sweet and sour sauce.

On Language: Functional or… NOT?

1. Robert tries to order his sandwich in the Subway Restaurant.  He has his IPAD already turned to App called Speak It.  He is supposed to wait for his turn and then push the correct button.  The IPAD voice would order what Robert wants: 12 inch Italian bread with cheese and pepperoni, toasted.  Robert is anxious and pushes the button too soon, just  as a woman in front of him gives instruction about condiments on  her sandwich .   Robert seems confused  and touches the screen again.  The message disappears.  It is Robert’s turn and IPAD is of no use.  Robert has to use his own voice. His pronunciation is so unclear that again and again he is not understood. He tries over and over.  It is such a torture.  I don’t help him, but I feel terrible. In every Subway Restaurant Robert orders the same things, and yet no matter how many times we practice at home the same phrases, when he needs to order he speaks too fast squeezing some sounds, shortening them, or dropping them all together.  It is painful for me to witness that but it must be much more stressful for Robert.  And yet that happens at least once a week with either my husband or me.

I do think that we are doing something wrong there.  I think that we are stressing Robert too much and his pronunciation is even worse than before.  I strongly believe that he pronounced words better a few years ago than he does now.   Yet, he has to learn to rely on himself, he has to learn to use language in a functional way.  But it is very painful  to watch. He is so determined to order his food, he puts so much effort, he is so patient.  He tries, he struggles, he fails, and then he tries again.    Those are the moments when I realize how lonely he is and how lonely he will be in the future.

2. Robert works on completing analogies.  In a folder,  made from the pages of Take It to Your Seat workbook, there are two sets of analogies.  Each set has 12 cards with first three words of each analogy and 12 cards with the  words completing each comparison. The first set is easy for Robert. He rarely makes more than 2 mistakes.  The second set is harder. Robert matches correctly  less than half of the pairs. For instance, he doesn’t know who zoologist or botanist are and how they relate to animals and plants. He knows that telescope is used in Astronomy but not that microscope is a tool for Biology. He doesn’t know what Biology is.  Although we spent some time in the past learning about human body and he was exposed to adjectives “circulatory” and “respiratory”  he is still  not sure how they relate to “heart” and “lungs”.  It is not a functional knowledge.  Well, not a functional knowledge for him.  He will never take SAT test. He won’t become a doctor or a nurse.   I know this is not a functional language for Robert for many reasons but mainly for this one:  Nobody expects him now or would expect him in the future to show familiarity with any of the words required to complete any of the analogies.   So why do I feel the compulsion to expose Robert to the vocabulary that seems beyond his ability to ever apply it in his daily activity?

Because I feel the words are tools for thinking, for understanding, for adjusting.  The words help organize Robert’s environment.  They make him a part of the world.

Finally, it is easier to teach Robert that “frog to amphibian is like snake to  reptile”  than to teach him how to order a sandwich from the Subway Restaurant.

Talk to Them, Listen to Him

Every Wednesday, on a way home  from Robert’s adaptive  horseback riding we practice ordering a sandwich in Subway (his favorite chain). “It-al-ian”

-Louder. –

-It-al-ian-

Not much louder. Syllables are clustered together in a hard to recognize sound.

Making a game.  Repeating it over and over as if we were screaming the name of a soccer team during a match. “It-al-lian, It-al-ian, It-al-ian!”

It should come easy.  It almost does. “It-al-ian”

In the Subway, Robert’s production of “Italian”  regresses to a scrambled sound.  The confused employee looks at me for help and translation.  I turn to Robert and draw a triangle in the air to remind him that the word has three syllables and he should space them accordingly.  Robert says it better.  But the employee attention has already shifted to me.  Like so many people before him, he doesn’t give Robert a second chance.

With a hardly hidden mixture of frustration and irritation I refuse to translate. “‘You have to listen to him, I point to Robert, I won’t be always here to interpret what he says.”

Robert is lost and uncomfortable.  He repeats the word over and over but with each utterance it becomes less clear.

Time for plan B.  I ask Robert: “Do you want French or Italian bread?”  Robert replies: “Italian.” Since there is no French bread on the menu, the employee understands.  He asks, “Long or short?”

Robert says quickly, “long, long, long”.  Too quickly for the employee who, yet again, turns to me for help and asks, “Short?”.  I am both depressed and angry.  It is true that Robert’s speech is hard to understand. But there is also no effort on the part of other people to understand him.  The employees at this and other fast food restaurants don’t show any interest in engaging in communication with Robert. Maybe they are just simply lost.

So I continue with Plan B which is to give Robert two choices hoping that he would repeat the chosen word in such a way that the employee understands.  I ask again, “Robert, do you want looong or short? This time I move my hands out for “long” to demonstrate the longer span, and bring them together for “short”.  Robert says, “Long” and imitates my movement.  The employee understands.  It already took too much time, so I just continue with plan B, asking questions myself. “What cheese do you want, American or provolone?”  It doesn’t really matter because Robert likes both and chooses sometimes one, sometimes the other.  Today he chooses American and the employee understands.

“Robert, do you want pepperoni or ham?”

“Pepperoni.

The difference in sounds is such that there is no room for error.  And yet not once before when Robert pointed to Pepperoni and said “pepperoni” he was not understood.

I go on, “Do you want it toasted? YES or NO? ”

“Toasted, toasted.”

Now, I just ask for a few leaves of spinach on top.  I do that myself because  Robert is not really sure he wants anything green on his cheese. Still, he accepts my decision.  Maybe because protesting would be too hard and would take too much time.  He is hungry after all and wants to eat.

The employee asks Robert what he wants to drink.  Although Robert pronounced the word “coke” with a short “o” sound, the employee does understand.  There is of course one more question to ask, which I forgot about. So the employee utters it, “For here or to take out?”.  Robert understands and repeats a few times with a strong conviction “here, here, here”.  Then he pays with his debit card, places his tray on the table, and goes to the fountain to fill his cup with ice cubes and coke.

Father

My son’s biking lesson started on endless boardwalk of New Jersey shore. We drove there in the evenings and walked along our children’s bikes.  Amanda rode her bike with training wheels while Robert kept getting off his tricycle every two seconds.  Our goal for Robert was to keep him sitting for 10-20 yards. My husband was bent over the bike with one hand on the handlebar and the other on the back of the seat. He was pushing the bike while  simultaneously trying to prevent Robert from escaping. When Robert was 2 years and 3-4 month old, he learned to tolerate sitting on the bike and being pushed by others.  I would risk stating that he even found it enjoyable. .

When he was three years old Jan started teaching Robert to turn pedals.  We had already moved to Massachusetts apartment complex which, with many narrow and winding streets, was not a good place to teach bike riding.  Harvard Arboretum in Jamaica Plain was much, much better.

First, Jan placed himself in front of the bike facing Robert , said, “Do this”, and demonstrated movement with his leg. He bent   and immediately straightened it with a  forceful exaggeration. Robert didn’t move.  Next, Jan pushed Robert’s leg down to make the bike move a little.  He repeated this series of actions hundred times. Next  day, another hundred times.  It took a few seasons before Robert started to push pedals on his own.

What surprised me about Jan’s teaching  was the fact that he used a  technique similar to discrete trails  (but without reinforcement if you don’t count the fact that bike moved a little with every turn of a pedal).  Since my husband avoided successfully all ABA trainings,  I must assume that he came up with this method on his own.

Well, Robert pushed pedals but he still didn’t steer the bike. The fact that we  didn’t realize that Robert needed a visual cue directing him where to go interfered with learning.  Robert wanted to ride on the edge of the asphalt, along the grass line. But my husband always placed bike in the center of the path believing that this position would give Robert more space to maneuver.  Wrong.  As soon as my husband took his hand of the handle bar Robert aimed at the grass at the right side of the road. One training wheel was on the asphalt while the other was on the grass.  It is possible that Robert already knew how to steer the bike, but because he always ended up with one training wheel on the grass we assumed that he didn’t know what he was doing. So my husband felt obligated to take the control of the bike again and bring it to the center.  When we finally realized what the problem was, Jan simply changed the position and instead of walking on the left side of Robert, walked on his right side.  This allowed Robert to ride close to the edge but not on the edge.

I don’t remember how Robert learned to slow down and/or stop the bike.

For a few more years he was still riding with training wheels.  When Robert was almost eleven years old, my husband went to a one day training on teaching children to ride without training wheels.  It was a free workshop offered by Ladders.  I don’t know what my husband learned there but the following weekend he took Robert to a church parking lot and managed to teach Robert to keep the balance on the bike without training wheels.

Of course,  Robert still had to learn changing gears, stopping at the stop signs, and many other skills.

I am writing this because today is Father Day and New York Times printed an article on parenting a child with autism.

It irritated me terribly.    I do  understand that other people have different attitudes/feelings/approaches toward their children with autism.  I don’t understand why those approaches are displayed prominently in  the  media.  Why it is more appealing  for editors to empathize with a father who suffers because of the issues related to his child with autism than to learn from the father who just do his parenting job with endurance, patience, and …great satisfaction?

Negotiations

The only thing that Robert disliked more than throwing old and broken stuff  away was buying new items.  He didn’t mind going to the store and trying on new shoes, but he would not allow us to take them to the cash register, pay for them, and bring them home.  Since we (the parents) didn’t feel we were able to handle major tantrum at the shoe store, we developed two stops shopping.  First, we would go to the store with Robert to find a right pair of shoes but refrained from buying it.  Then, we would return without Robert and purchase that pair.

Now, we just had to convince Robert to wear these shoes.

Well…

We knew that persuading Robert to wear the new shoes  would be a major challenge so we  waited until the weekend to deal with the problem. On Saturdays, Robert used to go for a long walk at Blue Hills and then to his favorite Outback Restaurant.  So making this outing contingent upon wearing a new pair of shoes seemed like a good idea.  If he wanted to go for a walk he would have to put on a new pair of shoes.  Robert complied.  He put on a new pair and then immediately took it off returning to the old one. “No walk.” I said.  Robert took the old shoes off  but was clearly in distress.  He was getting more and more upset.  He made a series of heartbreaking noises, and those sounds  melted both my husband’s heart and his resolve.  He wanted to give up. Robert sensed his father’s weakness and quickly put on old shoes again.  We already had struggled for 40 minutes or more, and now, my husband’s hesitations convinced Robert that his chances for winning this battle increased significantly.

I have to say.  I was mad.  My husband and I talked about this before and we both decided that we had to be firm. I knew it would be difficult  and now  I felt betrayed. My ally was changing his position in the midst of the fight.  Discussing the situation at this moment would be disastrous. We couldn’t show that we disagreed with each other. I felt that we couldn’t back off either.  I took a deep breath and relatively calmly persuaded my husband to leave it to me. I asked him to go to his computer and wait until Robert is ready.   Jan withdrew to his office.  That didn’t make Robert happy.  He already knew that his dad was easier to convince (manipulate). So without him Robert was even more distressed, sad, and mad.  He put his old shoes yet again.”No walk.” He took them off just to put them on  again. “No walk.”  He took them off.  Next, he brought the pair of his mountain hiking shoes.  “No walk” .  Then he brought one old, one new shoe.  “No walk”  He was negotiating with me by trying to find a middle ground. He was furious that I didn’t accept any of the suggestions he was making.  When I think about this today I feel that it was a very funny event. Yet at that time it was a real struggle. It lasted over 2 full hours.  Finally, Robert gave up.  He put on his new shoes and his father took him for a walk and to Outback.

During this walk Robert felt defeated and was not happy about that.  From time to time during the walk, he let Jan know, that it was not his choice to part with the shoes which seemed to be as significant and important to Robert  as parts of his own body. Every few steps he  made   sounds expressing his suffering.  Outback, however,  helped to cheer him a little.

But the next day and every day after that he didn’t have any problems with wearing these shoes.

I have to add that the shoes were comfortable, fitting Robert better than the old pair.

Even more importantly, from that time on, five minutes sufficed to convince Robert to wear any new pair of shoes.

Parenting the Sibling.

I have not written anything since May 10.  My “other” child, child without autism, had a commencement ceremony.  I flew to Oregon and  spent a few days in Portland. It was my first time away from Robert, with the exception of 4 day emergency trip to Poland. I felt strange. I didn’t even think about Robert yet I felt alienated from myself and out of place.  I followed the crowd of  other parents, clapped when other people clapped , walked when others walked.  I saw the exhibit of her work, read her thesis.  I talked to a few professors about Amanda.  I felt they knew more about her than I did.  I didn’t know what to say, but I talked a lot anyway. I helped with cooking and packing.  After my daughter either  disposed of or packed everything she gathered over the last four years,  we drove east hoping to get to Boston in our 12 years old Honda Civic.  We stopped to look at Multnomah Falls. We took pictures.  In  Baker City we found out that the lower engine of our car was damaged.  Since there was no other way out of Baker City we kept on driving. When we reached Boise, with the help of Goodwill, junk yard, and bike store  we got rid of the full trunk of stuff,the bike ,and the car.  We sent four huge boxes home and packed everything else in four suitcases.  We didn’t want to fly yet.  It supposed to be our road trip. Mother and daughter. In a rented  car we drove to Denver.  This time, only Amanda, my child without autism, was driving.  I drive with a left foot gas pedal.   It can be removed when someone else is driving and put in when I drive.  Yet, in the whole USA there is no car renting company which would rent a car with such a  pedal.   So only Amanda could drive.   And she did.    We talked a lot because we had a lot to say to each other and because we didn’t want to  fell asleep. We missed exit for Shoshone Falls.  We turned back to see them.  We took pictures.  We stopped a lot.  We were tired.  Both of us.  The 60+ miles after  Ogden were the hardest. We stopped at Days Inn in Evanstone, we watched Doctor Who, we hung out.   The next morning Amanda got a speeding ticket.   According to the state trooper she went 20 miles over speed limit.  I don’t know. I doze off for a few minutes.   Getting a ticket was a good wake up call. Our adrenaline jumped up and we didn’t feel sleepy any more.  We stopped to get gas,  eat, and look at the mountains. We talked a lot.  Mostly about  this, that, and nothing.  Just the fluff.  We were stressed and relaxed at the same time. We reached Denver before it got dark, drove through its streets, got to the hotel, returned the car to Avis, watched Doctor Who again, and talked about this and that.

As,the following morning, we were waiting for a plane, I realized that during those nine days we spent together we had a very different connections than we had ever in the past.   In the past Amanda often had to  be in the background. To make it worse, she understood perfectly why we, her parents, had to pay so much attention to Robert.  She understood this all too well.  And acted as if that was fine with her.

When she was younger I signed her for piano lessons, ballet, and art classes.  Not so much because I wanted her to develop all the talents she had, but because I felt that other people could give her more than I could.  Today, I don’t want to remember how  full of tension and stress our home was then, but I felt that for Amanda  being somewhere else was preferable to being home.  I am not so sure of that today.

I  couldn’t concentrate on what she was saying. I often interrupted her because I had to attend to her brother.  For many reasons, which luckily disappeared as Robert grew and changed, our trips to movies, restaurants, museums were always tense.

When she had  problems at school I helped her in the worst possible way explaining,for instance, math with poisonous impatience.

Even when we managed to go somewhere together – museums, independent movie theaters, cafes I was constantly checking time to make sure we would return home in time to relieve the respite provider.

Of course, she understood then and she understands now.  Still, she had her own problems, she tried to hide them.  Maybe she didn’t want to overwhelm me, knowing how on edge our lives were.  Maybe she knew that I wouldn’t be able to help anyway?

In the plane she read, while I  dealt with the  guilt, for so little time spent together, for impatience, lack of attention.  I realized how little I know about her.  And yet during all these years, not only the last four years in Portland, she managed to shape herself without my interference and/or despite my interferences, into a wonderful person I know so little about.  She is smart and yet seems lost, seems vulnerable and yet is strong.

She is alright.

And yet…