February 11, 2017

Writing about Robert is like describing the ride on the rollercoaster.  Before you find  sentences depicting your slow mount to the top, you are already loosing your breath while sliding down  with the speed that in a fraction of a second destroys all of your previously strung phrases turning them back into their gelatin beginning.

Not much has changed since, almost a year ago (February 23, 2016), I wrote the above sentences.  There are calm times when Robert and I are learning.  Robert is reading, answering questions, completing worksheets, speaking, solving problems.  Slowly, with some difficulties we move from one concept to another.  But before I write in this blog describing some of the idiosyncrasies that affect Robert’s appropriation of the specific ideas, something else happens, and I have to use all my resolve to steer Robert and us (his family) out of the path sharply descending into unknown. It might be that Robert wants our guests to leave and demonstrates his wishes in a way that cannot be accepted.  It might be that Robert refuses to go to horse riding lesson with me but for hours keeps demanding that dad, who happens to be sick,  takes him there. It might be that Robert insists that his dad stops working in the garden and returns to the computer.  It would be so easy to give up.  It would be much easier to tell the guests to end the visit.  They would understand.  It is much harder to make Robert accept their presence. It would be easier for dad, even when sick to get up and drive Robert to the horse riding lesson, than to teach Robert to accept that sick parent cannot always do what Robert wants. It would be easier to do garden work when Robert is not at home than to make Robert tolerate dad’s yard work.

It  is  much easier doing everything the same way since for Robert any change provokes his strong and long resistance. And yet we have learned that we have to do everything to make sure that Robert accepts different solutions or outcomes.

Years ago, Robert had to learn that different roads might still lead home.  He wasn’t even three years old when we noticed that he always became agitated when on the way home, we took slight detour.  He noticed immediately that it was a wrong way and acted up – kicking, wiggling in his seat and making noises. It took a lot of road constructions and detours before he understood that different roads might lead to the same place. Ability to adjust to change enlarges one’s world and frees a person from the rigid bars of rituals.  Yes, Robert appears to feel safer when things remain the same. But, the things never remain the same forever.  The change is inevitable. Robert cannot escape it.  That is why we try to help Robert to adjust to the change or, sadly, show the consequences of not accepting it.

Those difficult moments often make me forget about calm hours of learning.  But we still learn.  Following old Reading Mastery V curriculum, we kept reading The Wizard of Oz. We solve problems – two pages a day from Singapore Math 4B . We build birdhouses or assemble 4 cylinder working toy engine.  And we regain our serenity.

February 9, 2017

Two weeks ago, Robert wanted to go to his adaptive horse back riding class.  He really wanted to go. However, his dad, who has been taking him there in the last few months, was sick and couldn’t drive.  I wanted to drive Robert, but he refused to go with me.  It was strange since it was  I who used to drive Robert there most of the time in the previous few years.  Robert wanted his dad.  It was their Sunday routine.  Horseback riding, shopping in Costco, and Crispy Chicken sandwich from Mac Donald.  I promised to do the same, but Robert refused.  He kept repeating, “Dad, dad, dad”.  He brought his dad’s pants and sweater, so dad would get up, dress, and drive.  He even tried to pull dad from the bed.  No words would persuade Robert to change his mind.  I had to cancel the lesson.  But Robert still wanted to go.  He didn’t seem to grasp the concept of cancellation.  At least not then and there.  I tried to turn his attention to something else.  We studied a little.  We went to the supermarket. But when we came back, Robert began insisting again,  Insisting!!!.  “Horse, horse”, he kept telling his dad while dad tried his best to sleep.  Over, and over and over.  Since the words didn’t persuade dad to drive Robert to the riding lesson, Robert emphasized his wish by taking a bag of carrots from the refrigerator and bringing it to dad.  “Horse, horse”, he kept repeating and simultaneously pointing to carrots.  Every time dad responded by telling Robert to put carrots back in the fridge.  Robert complied every time only to return to dad without carrots but with the same message, “Horse, horse, horse.”  When that didn’t help, Robert again took carrots to his dad repeating the same mantra “Horse, horse, horse” and then again returning it to the fridge.

It was exhausting.  It was hard for my husband and  for me. But  it was excruciating for Robert. He was clearly in distress.  Ignoring him didn’t help.  Redirecting him didn’t help. So I did the only thing I could do.  When Robert went to his dad again but without carrots, I took all the carrots out of the plastic bag and hid them.  I left, however,  the empty bag in the refrigerator.

Robert opened the refrigerator drawer and found an empty bag,  threw it away, and …. went to watch Netflix on his IPAD.  After four hours of attempts to force his dad to go with him to the horse riding class, Robert calmed down in a second.  Just like that.  He didn’t mention riding class not even once that day.  Maybe for Robert there was no point of going horseback riding since not even one carrot left.

I left an empty bag because of my previous observations of Robert’s reactions.  Many times in the past, when I tried to throw away his socks with holes, Robert would go through all the trash cans to find them and put them back in his dresser.  When I, however, cut  socks from top to bottom leaving a flat pieces of fabric and left them in the open, Robert accepted the fact that they couldn’t be worn anymore and dropped them in the garbage basket.

So I believed that hiding of the whole bag of carrot, would make Robert even more anxious. He doesn’t like when imperishable things vanish without explanation. Thus he would keep looking and persevering even more.  Carrots, after all, could be eaten or used in cooking. Their disappearance could be explained and accepted to everybody’s relief.

February 6, 2016

As soon as I drop dirty laundry into the hamper, Robert rushes to organize them in his way. He removes the clothes I have just dropped and places them back in the hamper one on top of the other in a the same pattern that he uses for his own garment. He places his clothes in the hamper in the same order he takes them off.  The shirt is on the bottom, followed by the white undershirt.  Next go his socks, jeans, and underwear. Every article of clothing is spread evenly.  In the morning, he does the same thing with his pajamas. He changes pajamas everyday.  Nothing would convince Robert to wear the same pajama two nights in a row.

When he suspects that either his dad or I messed up the clothes, he empties the whole hamper and meticulously places each item inside  making sure that the order is followed. Day clothes, then night ones, day clothes, then night ones.  My clothes are also placed in a proper sequence.  And so are dad’s.  Robert doesn’t rush.  He takes time.  He doesn’t make mistakes.

With similar attentiveness to the details, he places clothes in the washing machine and later in the drier.  When doing so, he separates white garment from the dark, but nonetheless, keeps as much of the original order as possible.  It is no wonder that Robert devotes a lot of his time to the laundry.

I have tried to explain to Robert that organizing dirty laundry is not important since the washing machine and the dryer would mix up all the clothes.    I have told him that we  could just drop the clothes randomly to the appliances and concentrate instead on folding and putting clean laundry in appropriate places.  I have told him that many times, but Robert doesn’t accept randomness. Unrelentingly, he keeps on organizing  each chaotic corner of the universe. One laundry basket at a time.

February 5, 2017

Robert tries to find patterns in  our chaotic movements and haphazardly performed everyday chores. If we repeat the same, meaningless behaviors a few times, Robert treats it as a paradigm of how we should behave every time. He insists that we  follow the model he established for us based on his observations.  We usually notice that when, for one reason or another, we abandon our insignificant routines and Robert becomes restless and  tries to compel us to return to our convenient but senseless habits.

We know we cannot allow that, but all too often we are compliant with Robert’s wishes.

1. Robert wears his socks at home while I usually walk barefoot at home.  So, when I had my socks on, Robert followed me all over the house.  “Socks off, socks off” , he kept repeating.  A few times, I took them off not really caring one way or another.  Only when I noticed how distressed Robert became about my socks, I understood that we had a problem.  So, to Robert’s dismay, I started wearing socks more often.  Knowing, however, how persistent Robert can be, I developed a strategy that would give Robert an indication of how long I would keep them on.  “Socks off, socks off” , insisted Robert.  ” Oh, you want me to take socks off, I will do that when I finish this or that (usually short activity).  “I will take them off when I get on the sofa to watch TV”.  It took a while.  But today, I can proudly say that Robert doesn’t care one way or another if I wear socks at home or not.
2. Robert doesn’t care if I do some work in the yard or in home.  He cares  a lot, HOWEVER,  if his dad instead of working on the computer decides to do a longer project in the back yard. Dad, s venture into backyard, makes Robert extremely anxious.  He follows his dad every step repeating, “Computer, computer.” He screams with a great pain when dad keeps reinforcing a wobbly vegetable garden gate.  He tries to pull him home.  Well, he is a pain in the neck.  The only tool to  mitigate this behavior was to ask Robert to help.  “Bring me the wrench from the garage”  “Hold this”  “Put this away in the garage.”  etc.  Giving Robert small tasks  didn’t extinguish the behavior completely, but it reduced it.  Still, we could plan it better.  we could tell Robert ahead of time of what dad would do and what would be expected of him.  Of course, Robert’s different reactions to my work in the yard and dad’s work are result of his observations.  Dad works on a computer almost all the time, while I work in the yard and in the home.
3. I used to drive Robert to his afternoon activities, but for the last few months it has been his dad who has taken him swimming and horseback riding. Everything went smoothly until one Sunday dad get sick and I needed to take Robert to his horse riding class.  No way! Robert insisted that dad goes with him.  Nothing seemed to persuade him otherwise.  We had to cancel horseback riding class that day.  And as of now we are still planning out next move.

February 2nd, 2017

Not so long ago, I had a notion that Robert’s behaviors would only get better.  I thought that as he grows and learns, the problem behaviors we had dealt with in the past would vanish. I believed that acquired knowledge would result in better understanding of his environment and thus result in appropriate adjustment to new situations. I didn’t anticipate new kinds of issues. But they kept emerging.   Some of them were created by Robert’s ideas about the rules controlling his world.  The sources of other remain murky.  Whatever their origins, the main cause of Robert’s problem behaviors remains the same.  It is the lack of ability to communicate the causes of his distresses to others.

Robert used to like going out.  He still does.  He likes going skiing.  He likes going on Saturday’s field trips organized by one of the centers.  He loves SNL parties he can attend in another program. He wants to go to movies.  Yet,in the last year in all of those and other places he expressed very  loudly his desire to go home.

“Home, home”,  he would call in the middle of the movie.  “Home, home”, he demanded not even one hour into 2 hour-long ski lesson.  “Home, home”, he insisted in the middle of the party.  “Home, home, home” he would keep on saying using all kinds of voices, from a low one to a very dramatic high pitch.

It gets more complicated.

In the movie theater, for instance, Robert doesn’t want to leave before the movie is over.  He wants to go home, but not before the ending.  If I get up, and say, ” Let’s go”, he would equally loudly protest, “No, no, no!” .  Because Robert wants  the movie to end just that minute, so he could leave after finishing seeing it.

In the bowling alley, Robert would keep bringing regular shoes to his bowling companions, so they would stop playing, take off their bowling shoes, and leave so Robert could go home.

He can be extremely  persistent.  He can repeat “Home, home” ten times a minute, every minute for an hour or longer.  This is not easy for him, and it is equally difficult for everybody else.

If this behavior happens during his swimming or skiing lesson, it is helpful to tell Robert that he would go home after completing some other activity.  ” Robert’s swimming instructor, tells Robert that he would go home after swimming one or two more times(or three, depending on her assessment of his distress.) She moves her hand back and forth as many times as she wants Robert to swim.  The skiing instructors use similar explanation although they might tell Robert, “First we go on this trail, next on that one, then you will go home.”

The most important thing, however, is NOT to interpret this behavior as a sign that Robert doesn’t want swimming, skiing, field trips, or going to movies and parties. It is possible that when he goes to a new place or the old place he hasn’t visited for a while, he feels confused of how long he should stay there and what to expect.  So we kept going back with Robert.  We tell him what to expect in this place and what is expected of him.

That is why Robert went to two other SNL parties and three other ski lessons. He did better, then he did great.

It is not, that I believe that Robert has already learned not to call “Home, home”  in many new places, or the places he partially forgot and thus become confused and concerned.  He might call, “Home, home” again, but that is not the end of the world, and it shouldn’t be something that would prevent him for coming back.