Untangling the Knot 3. Scavenging for Food

October 27, 2017

A few weeks ago, I learned that Robert was stealing cookies and candies from his peers and from the employees at his program. He would sneak out of the room and aim for drawers and cabinets where he anticipated the presence of goodies.  He would also try to grab candies from others.  He was quick, alert, and well-informed about the places where the sweets or chips  were hidden.

The only thing I could do was to pick up Robert from the program every time he went on illegal scavenger hunt.  But, when I picked him AFTER lunch, Robert didn’t mind and was quite glad to leave with me.  So my picking him was of no consequence. When I tried to pick him up BEFORE he consummated his lunch,  he resisted with all his might.  And might he had.  He pulled, he pushed, he wiggled, he ran away. When he finally get into the car (after eating a part of his lunch any way), I felt exhausted, scared, and totally humiliated. Moreover, despite the fact that this incident was as traumatic for him as it was for me (and others), Robert continue to search for chips and sweets in all forbidden places.

Robert has a long history with food.  When he was very young he had so many serious food allergies that he was diagnosed with failure to thrive.  When the allergens were finally discovered, and proper diet was introduced, he made up for the lost weight.  For a long time, he was in a very good shape. Then in his last year in public school  he gained 15 pounds in six months.  Nothing changed at home.  At school however, he was stuffed with additional calories from chips, cookies and coke. That was the way, his last teacher and teachers’ aid managed Robert behavior.  In the last two years, he lost 10 of those pounds.  Now, however, he is getting it back.  It doesn’t help, that I decided to add a small 3 oz bag of chips and two chocolate chip cookies to his lunch and snack. I did that hoping  that this would prevent him from stealing food from others.  It didn’t.

Robert can exhibit both restrain and complete lack of it as far as food is concerned.  At home, he doesn’t touches KitKats because he knows that one candy is added to his snack bag each day (with a tiny box of blueberries).  He doesn’t touch  Milano cookies as one of them has to be  included in his lunch. Just recently, I placed two chocolate chip cookies in one of the 6 sandwich bags and placed them in the drawer. (Those are the additional cookies I recently added to Robert’s snack.)  Robert let them stay.  He ate, however, in one afternoon. all the cookies which remained in original store container.   In his mind they didn’t have any other designation, so there were for him to gorge on. And gorge he did.

He eats a lot and often.  I suspect that his constant search for food might be a result of not finding other way to occupy himself. That probably applies as much to his home as to his program. Although we try to engage him in different activities, there is not much he would do alone except eating.

Untangling the Knot 2. Our Home, Their Houses

October 26, 2017

I used to like to have friends and family come over.  I liked when they came to spend the holiday weekend with us, I liked when they came for a special day dinner.  I liked when they came for a quick cup of coffee or tea.  Lately, however, having guests over became much more complicated.  I never know how will Robert react to their presence.  He can welcome the visitors with a smile.  He can ignore them and go to his room to watch movie on Netflix.  But he can also keep giving them clear indications that they should leave. He can be very persistent.  He will keep orbiting the table watching for empty plates or cups which he immediately takes to the kitchen sink.  He might be pointing his fingers at them and keep saying. “House, house, house.” He might bring their jackets.  He might pick up their purses hanging on chairs and place them on the table in front of them. All of that with clear suggestion, “House, house, house.” Even worse, on two occasions he grabbed arms of a guest trying to pull him or her toward the door.  Both times he immediately stopped, when I told him to.   Nonetheless, it was very upsetting.

I always ask guests not to leave at that point.  I don’t want this behavior to be rewarded.  That is why, I apologize to guests and at the same time, I ask them to stay a little longer.  Depending on how long the guests planned to stay, I, with their cooperation, try to manage Robert behavior.

I tried to redirect Robert and ask him to complete a puzzle.  Robert very reluctantly complies. He brings the puzzle to the table and keeping eye on all of us, tries to assemble it. Still, after every few pieces, he points his fingers at our guests and says, “Home, home, home.”

When the guests are almost ready to leave, I tell Robert that they will go to their houses at specified time, usually 15 minutes.

One of the visitors, after telling Robert that she would go to her house in 15 minutes, she set the timer.  For those 15 minutes, Robert stood almost frozen next to the timer and watched moving numbers,  hardly even blinking.

A few times, at night, I told Robert that the guests will leave when he will take a bath. That is the most flexible solution which to some degree takes pressure from everybody.

I also pour a little more tea, or water into the guests’ glasses, because as long as they have something in them or on their plates, they are allowed to stay.

I hoped that by now, Robert would learn to relax and tolerate his parents’ guests, but it is not so.  There are days when he doesn’t mind and the days where he is very persistent.  It is not about who comes for a visit, because at different times he might behave completely differently toward the same person.  There are other factors at play and I can only guess what they are based on rather flimsy observation.

  1. Not too many visits on the same day.  If we had someone stop by in the morning, Robert is less accepting of afternoon visitors.
  2. If the guest stops on the day when Robert has his mind set on an exciting activity which might take place hours later, Robert believes, that the presence of that person interferes with his plans.
  3. If someone comes when Robert’s dad is at work, Robert might believe that this person precludes his father from coming home.
  4. Maybe, just maybe Robert wants peace and quiet and a little more attention from his parents.
  5. Maybe, he wants to assert his position in our house as someone whose preferences also counts.

Whatever the reasons they all need careful considerations and appropriate approaches. At this point I don’t have any solutions. Yet

Untangling the Knot 1. Screaming

October 25, 2017

I have difficulties writing lately, as I cannot make sense of tied up together emotions and half-baked thoughts. I feel the obligation to pull separate strings from that knot to understand causes and consequences of Robert’s behaviors.  Unfortunately, the byproduct of those behaviors is a heavy load of mixed emotions that all too often leave me confused.  Of course there are brighter moments, shinier threads but it is almost impossible to write about them when I am overwhelmed with Robert’s current difficulties that seem to place his future in a very depressing context.

  1. Screaming. The frequency and intensity of screaming increased over time. I hoped that it was a passing phase.  Then, I though it was the result of stomach discomfort, acid reflux, or asthma.  So we tried to address all those conditions. But then I noticed prolonged times of increased anxiety.  I noticed that during the walk in Castle Island, Robert became agitated every time we walked closer to a man in a red shirt and a school age boy. When they stopped on the side of the boardwalk to look at the open ocean, Robert passed them quickly  and from that time on, he seemed relaxed and happy.  Robert screamed when a dice, from the game we played, fell on the floor.  He seemed relaxed just before that. Robert started screaming in Costco, when three shoppers pushing their shopping carts seemed to aimed for him blocking his way.  But he continued screaming also after they dispersed. Robert screamed at home when nothing seemed to happen that could trigger making distressed noises. There were times, when he screamed, patted his cheeks in quick, light motion then froze for a few second as if he were listening to his own body.  He did that a few times. Screaming and freezing. Was he in pain?  I assumed, he was and intervened with pro air for asthma, Metamucil crackers for gases and Omeprezole  for acid reflux.  But of course, it could be something completely different.  Maybe that was the suddenly active memory of the past event.  Maybe that was because he wanted to share something with us but didn’t know how to communicate. Maybe that was the environment who changed without any consideration for Robert’s OCD. Maybe, he felt obligated to do something, he didn’t want to do? As for the man in a red shirt, it is possible that Robert knew that person from a different place and thus became confused when he  appeared in a different environment.  It has been my past observation that meeting someone Robert knew from a particular environment in a new place triggers anxiety as if the structure of the whole idea of how the world is constructed was broken.

Just this one behavior involves so many possible causes and consequences.  How to untangle that?

Vicious Circle

October 9, 2017

It happens over and over.  Robert grows and learns.  But neither his increased understanding nor acquired knowledge  prevents him from falling in one of the similarly set traps .

The design is almost identical.  Robert enters a new program.  His teachers or program coordinators shower him with attention. Then a few weeks, a few months, or a couple of years later the attention is withdrawn. The structure of the program changes, the teachers change, his peers change.  Robert reacts with increased anxiety to the environment that left him in the cold.   The anxiety leads to more behavioral outbursts and that to even stronger rejections.  Those rejections however, are often presented as ways of dealing with his behavior not as emotional distance.  He feels farther and farther from everybody.  He feels something is different.  But he is unable to clearly grasp the factors of changing dynamics. He becomes even more anxious. Small things, f cause him to scream.  He grows frustrated, and even more anxious. He has to leave the program.

It has never been the case that the Robert’s teachers were able to stop this wheel from leading to the ravine.

Robert was 3 years old.  He was accepted with open arms in a preschool program.  For 3 weeks the main teacher showered him with attention.  After three weeks another boy entered the program, and the teacher directed her efforts to accommodate this new student.  Trying to regain his position, Robert followed the teacher everywhere, sometimes (I was told) dropping on the floor just in front of her. Of course, she was irritated.  After all, he precluded her from fulfilling her obligations toward other students.

The shameful thing is that nobody, including me, was at least concern with what that did to Robert. What he felt.

When Robert was 12 years old he entered a collaborative program.  Again, he was welcomed with open arms. There were only 4 students in the program and a teacher and three teachers aides. They needed more students for a very survival of the class. It seemed to go well. But the following year, three new students arrived and three of the experienced aides left. The classroom was placed in a new town.  Everything changed.  Most of all the atmosphere changed.  The previous year as I was walking toward the school, the aides always approached us.  They asked Robert to walk with them, so I could leave.  The following year, the aides never, not even once, approached us as we walked toward the school.  They scurried away, as if afraid that we could approach them and walk those 30 yards together.

I knew then, that there was something very wrong. Robert knew that as well.  He was much more anxious.  His OCD forced him to go every day to school, but as he was approaching the building his steps got heavier and slower.

When Robert was 14 years old, he entered public school program.  No, at first, he was not welcomed there by administrators, but he was welcomed by his aide, Mrs. Scott. Her attitude toward Robert was contagious and   soon he was sincerely accepted .  Then three years later a new teacher came.  Everything changed for Robert with that one person. Her aggression toward Robert’s aide, Mrs. Scott, was not lost on Robert.  He felt it, he felt changing atmosphere in the whole class.  He reacted with confusion, then anxiety. Then came screams, then more insecurity and confusion.  I kept being called to school over and over.  I felt Robert was falling apart.  I took him out.

In 2014, Robert entered an adult program with vocational component. He slowly kept adjusting.  He loved it.  But the good politicians who want to replace good with better, specially if the better is cheaper, ordered all sheltered workshop to cease.  So every day, something was changing in Robert’s program.  His most capable peers kept disappearing as they were introduced to jobs in the community.  The furniture kept disappearing, the work was gone.  As the one of he most difficult to be placed, he was left in the sheltered workshop longest.  He reacted with anxiety.  He was anxious during any outside trip, afraid that during his absence, other changes would happen. The ground was moving from under his feet.  The people were changing also.  The one who paid the most attention to him at the beginning were gone. They found better paid jobs.  Others got different assignments. He wasn’t sure to whom to turn for directions and well, for comfort.

He still doesn’t know.

Here we are now.  We are both older and both drifting without directions. We are both anxious and we both worry. 


Quest for Missing Socks

October 2nd, 2017

Last night, as Robert and I were folding and hanging clean clothes, I noticed that one sock didn’t have its match. I knew that if Robert realized that, he would search for the missing sock as long as necessary. With the passing hours he would become more and more agitated.  He would rummage through all the hampers with dirty clothes and all the drawers with clean ones. He would demand our support in a few, but very loud words.  I didn’t want that to happen at 10 PM so I hid the sock under the pillow. Since all other socks had their companions, we all were spared the anxiety related to the possibly futile search for the evasive article of clothing.

This morning, however, Robert realized that one pair of socks was missing.  Moreover, it was exactly that pair that he planned to wear today with the pants and the shirt he had already chose. There were more than 30 pairs of socks Robert could choose from, but he wanted just the one that was missing.  He looked and looked, picking up pair after pair.  He took out the whole drawer.  He checked the drawer below.  He emptied all three compartments of the hamper with dirty laundry.  He moved the comforter and the pillow and he found it.  He found one sock I had hidden the previous night.  Encouraged by his discovery, he renew his hunt.  it was getting late so I had to cancel the van which takes him to his morning program.  Still, I decided not to help Robert.  I wanted him to have another experience that would tell him, that lives go even if it is not perfect.

I pretended to be oblivious to his exploration.  Finally, Robert relented and put on another pair of socks.  Then he showed me the sock he found, “Sock, sock”, he said.

“The sock is missing”, I confirmed.  “I will look for it when you are in your program. ”  Robert was fine with that. I drove him to his program.  As he was leaving the car, he reminded me, “sock, sock”.

“Yes, I will look for it”  I assured him.

And that is what I will do now.

Creating the Rules and Breaking Them

October 1st, 2017

As I said many times, Robert never explains himself.  He doesn’t tell us, for instance,  what rules govern his world.  Nonetheless, those rules exist and they are firmly established. We usually become aware of them only when we try to break them, unaware  they existed.  In those instances, we have to  confront powerful resistance from Robert who tries to maintain the established pattern with all his might. In those moments we also gain the understanding of how our own actions allowed Robert to intertwine another artificial rule into his  system of rigid convictions.

The rule we discovered this afternoon stated, that in our house only Robert has a right to eat eggplant and only when it is prepared with cheese and tomato sauce. I became aware of that imperative when I attempted to grill one of two eggplants for dinner.  Robert grabbed it from me and put back in the refrigerator.  I tried to get another one.  The same thing happened.  “Potato, potato” he kept saying letting me know that I had other options.  He tried to give me zucchini, a bag of mushrooms, and red pepper. Just not the eggplant. He defended the eggplant with his whole body letting us know that we had a problem.

I really didn’t need that eggplant for dinner.  There were other vegetables on the grill already.  What I needed, however, was for Robert to understand that he was not the only one allowed to eat  aubergine and that it could be prepared differently. Unfortunately, no amount of words would convince Robert of that possibility. Only fait accompli could force Robert to accept that fact. So we did play a trick on Robert.  Jan grabbed the box with three bottles of coke and ran with it. . Since having an  access to one 11 ounce bottle of coke was more important than eggplant, Robert followed Jan  leaving the fridge defenseless.  I picked the eggplant and before Robert returned with coke, I managed to peel, slice, and season it with soy sauce and sesame oil. Robert didn’t  mind.He looked calmly, turned over and left.

I couldn’t blame Robert for his strong conviction about eggplant. Years ago, he was extremely picky eater and when he began eating eggplants which I prepared for all of us, I was extremely happy.  So happy in fact, that once a week I prepared eggplant just for him.  During the years that followed, he became certain that he has exclusive right to eggplants and he tried to defend that right with all his might.

We, the parents already noticed that from the  actions we repeat from time to time,  Robert deduces pattern and  wants  us to maintain it forever. Usually, we find a way to deal with particular beliefs one at a time.  We didn’t however find a way to make Robert understand the general concept of changing the rules and expanding his world with a mental tool of flexibility.