Embarras Du Choix

January 29, 2018

Last Friday, Robert and I drove to Walmart for the sole purpose of buying a few packages of jello. The matter of fact we were  going to buy only pineapple jello, as that one is Robert’s favorite.  Maybe, just maybe, also watermelon flavor.  Currently, none of the grocery stores in the area has either of them on its shelves. When, however, we got to the proper section of Walmart, Robert became mesmerized by the sheer quantity of flavors.  Moreover, I told him that he could choose any 10 packages he fancies.

That was a problem because

  1.  We set out just to buy two flavors.
  2. We didn’t specified how many of these two flavors Robert expected to buy.
  3. There were many flavors advertised by enticing colors  and suddenly Robert had a zest for all of them.

Robert didn’t know what to do. He wanted to do what was, in his mind, appropriate.  He wanted to buy only pineapple and watermelon gelatin desserts. One of each. It took a lot of convincing on my part for Robert to take two of each kind.  But then he was still not leaving.  He kept taking packages out of shelves and  putting them back.  He held the lime one, then grape one, then blueberry one.  Just for a few seconds.  He was tempted to taste something different, but then he restrained himself to just his first choice.

People were coming, grabbing one item or two, and leaving.  Robert was still contemplating little boxes of Jellos while opposite forces were confusing him more and more.  It didn’t help that often, he showed me a package as if asking for permission. He always got it, but that didn’t help him make his mind.  It took at least 30minutes before the last barriers precluding him from choosing WHAT HE WANTED and not from WHAT HE BELIEVED WAS APPROPRIATE  were broken.  Robert got nine packages, dropped them in the shopping cart, and energetically aimed for cash register.

The flavor he chose: 3 pineapple, 2 watermelon, 1 grape, 1 blueberry, 1 lime, and 1 strawberry.

On Friday, Saturday, and Sunday he made, with my decreasing help,  three of them: blueberry, grape, and watermelon.  He has already made his mind for today.  Today he wants to taste lime.

I consider that experience important, as Robert has had difficult time with making choices.  He usually tries to guess what I (or any other person accompany him) wants him to choose. With a few exceptions of things we buy regularly, Robert doesn’t want to buy anything new. He seems to censure his own wishes before they even come to light. Choosing and buying 9 boxes of Jello was an important lesson and the one which cost less than $7.

Advertisements

Playing the Teacher

January 23, 2018

 

A few days ago I pulled from the shelf another old workbook, Developing Receptive & Expressive Language Skills in Young Learners.  It was the first publication from “Great Ideas for Teaching. Inc” I bought almost 20 years ago  and the one I used more times than anything else. This time, however, I try to use the workbook to reverse roles.  Robert is the teacher, I am the student. But when Robert is the teacher, he doesn’t read questions/directions from the book.  He practices asking the same two or three questions with a few variations.  He points to the object and asks one of the questions:

“What is it?”

“What is it made of?”

“What is it used for?”

Sometimes there is a need to change “is” to “are” . Sometimes I suggests ( I write on a piece of paper which Robert reads before getting in the role of a teacher.) asking ” Where can you find it?” or something equally simple and almost obvious. Robert applies these questions to the three pictures on the page.  I answer them correctly and Robert has to say, “Good’.

Next, Robert gives me direction, “Touch ……” followed by the name of one of the three pictures.  This time I give him two correct answers and one wrong.  When I answer correctly he has to say, “Good Job”. When I made mistake, Robert has to say, “No”.

I don’t ask for more, as it is still a bit confusing for Robert to get a new perspective on language.  He is, however, very amused when he can say “Good Job”.  He heard it thousands times before and now he is in charge of dispensing praise.

I have to add that when I began this approach, I first wrote the three questions on the separate piece of paper and asked Robert to read them a few times just to memorize them in THIS context. I covered the questions and Robert followed with asking them while pointing to each of the objects.

I didn’t want Robert to just read the questions and directions from the workbook as that would not lead to more independence.  Memorizing the smaller number of questions or directions and then retrieving them from his memory/mind seems to be a more useful skill.

Screaming

January 2nd, 2018

During the last day of 2017 and the first day of 2018, Robert had many bouts of screaming. Although they didn’t last long,  a couple of minute each, they were sharp and very loud.  They were the mixture of maddening pain and unspecified anger.  I had an impression that the pain was attacking Robert from inside making him disoriented and panicky.  He might also be mad at us for not helping him.  But we didn’t know how. He had similar reactions before usually related to either stomach pain or asthma.  We kept giving him inhalers and Metamucil crackers.  Those screams subsided for part of the day only to returned a few hours later.  The series of shouts usually happens during the span of one or two days and then they disappear for couple weeks.

There is nothing we can do besides offering possible medications based on our guesses and the previous history of dealing with similar situations.. When we try to comfort Robert he is even more mad and loud.  The most screams come just after Robert awakes  and when he goes to the bathroom.  When in the bathroom, Robert screams not only louder and more frequently but also intersperses his screams with whiny inarticulate mumbles.

Although tomorrow (today really, as it is past midnight) I am going to schedule doctor’s appointment, I am not sure Robert gets any relief.  Too often doctors use the diagnosis of autism not as a challenge to diagnose better but as an excuse to do less and explain the behavior through the diagnosis of autism. Well, the diagnosis only explains the lack of ability to describe the pain, but not the pain itself.  Will I be able to convince the physician of that fact?

January 3rd, 2018

Just a few minutes after midnight. Much better day today.  Robert mumbled a little when in the bathroom but only because I tried to hurry him up to make sure we wouldn’t be late for the medical appointment. The doctor made a few adjustments to medications.  Robert was clearly happy to be in the center of attention and complied with all the  directions coming from the nurse and the doctor.  He was wonderful all day.  We didn’t study too much. Three pages of speech pronunciation.  One page to practice order of mathematical operations,  Some problems were rather complicated. Finally, three pages of language exercises. One he completed all by himself.  Over all, Robert was in really good mood.  A few times he massaged his feet with the help of a machine usually turning also the heat.  He giggled partially because it tickled and partially because he considered it to be funny.  And in a way, it was.

January 23, 2018

We had all very challenging weekend.  It started on Friday morning. when Pam came and it was time for Robert to put on his shoes and jacket, he somehow couldn’t focus on that.  He was moving around,  He wanted to go, but something was distracting him.  It took more than 20 minutes before he finally got ready to leave.  In the evening he started screaming. Something bothered him.  Maybe that was marinara sauce I used for eggplant I made for Jan and myself.  For Robert I use tomato sauce with egg and flour. Maybe it was after all acid reducer.  It was supposed to help him.  But I have a vague recollection from the past, that there was something in it that made Robert very uncomfortable and that is why the doctor switch to Omeprezole.

On Saturday and Sunday Robert screamed a few times but for longer time and it was horrid.  He didn’t have appetite, eating the same hamburger the whole day.  He threw up at least once.  He was holding his breath. I think it was the first time I broke into uncontrolable cry which scared Robert even more.  I didn’t know what to do.  Going to emergency where we would have to wait for doctors who wouldn’t not have any idea what to do and wait and wait when Robert was in such distress it would make harder for Robert and very hard for us.  Still, I called the nurse on duty and she advised me Mylanta and Toms.  I went to the store and bought them.  After  I gave him one pill of Tums and he seemed better, but after teaspoon of mylanta, he screamed again.  the doctor on Monday was eager to suggest psychiatric drugs to calm Robert and therapy. This attitude depressed me again because it demonstrates that people with disabilities who cannot talk have much harder time getting proper medical care than people who do talk.  Instead of getting more thorough, the medical professionals find easy way out relieving them of any effort to find diagnosis.  Yesterday, I kept giving Robert only potatoes with cheese from microwave and white bread with butter.  Later he ate a little of arugula, my husband gave him and a peach jello, he asked for.  After three days of total discomfort, yesterday Robert was calm and pleasant.  we did blood test without any issues and at his request, we went for a walk in an empty and foggy Bird Park..

 

Where from Here

December 31, 2017

I haven’t written anything since November 19.  There are many excuses.  The November and December holidays happened.  We had guests for Thanksgiving and for Christmas. Robert’s grandma stayed with us for three weeks.  Robert sister came for two-week long visit. Robert’s dad experienced sudden turbulence at work which somehow affected the whole family.

However, the main reason for avoiding these pages is both simple and complex. It is simple because it can be expressed in a few words, “I was confused and lost”. It was complex, because the reasons for my confusion were intricate and multifaceted.

I don’t know where Robert is heading. I don’t know where he is now. I don’t know who will be there for him besides us, his parents and, to some degree, his sister.

It seems that Robert functions differently at his program than he does at home.  Many things I teach him at home do not carry over to his program.  I can guess reasons for some of the differences in performances in varied settings. I understand why he made errors in adding fractions when he was at his program, while he doesn’t make mistakes at home. But I cannot explain other behaviors – like stealing candies or cookies in his program.  At home Robert shows restrain and doesn’t reach for those candies or cookies which are included in his lunches or snacks. In the program, however, it seems like he cannot help himself but to go on scavenger hunt during any transition time.

Even when I know reasons for those differences I am still unable to make Robert immune to the factors that confuse him when I am not around. I also cannot write a manual that would account for all the possible situations Robert might find himself in needing a very specific support.  Well, I could attempt to concoct a guidebook dealing with some of the situations, but who would read it in those precise moments when instruction is needed?

It would be much more suitable to write a guidebook for Robert.  The manual HE would consult with when confused or lost or which HE would offer to the people who are supposed to assist him in his daily endeavors.

Robert still needs a tool that would let him carry a skill from one setting to another, from one person to a different one.  A tool that would let him understand the essence of skill that is not dependent on the setting.  And of course Robert also needs another tool that would let him adjust behavior to fit the setting.

To find, design, or develop such tools I need to go back to writing every day, well, almost every day.

 

Waiting for Dad

November 19, 2017

It is Sunday before Thanksgiving.  Jan went to New York to bring his mother for Holiday.  I have cold for the fourth day now.  That means that I haven’t studied with Robert for the last four days afraid that I would spray my germs at him. That change in the routine left Robert slightly confused and deregulated.  That was not a problem during the last three days as Jan was home and could take over.  But today, my cold and Jan’s absence become troublesome.  I want to keep a distance from Robert so we don’t study.  Instead, Robert keeps calling, screaming,and demanding that dad comes home.  As he doesn’t understand all the arrangements – dad took the train to New York but is supposed to come back in Robert’s grandmother’s car.  Robert doesn’t grasp that, so he wants me to put my shoes on and drive to New York for dad.  He wants it.  He screams for it, he demands it over and over.  Sometimes, he takes a few minutes break.  I am lucky if the break  lasts 5 minutes.  Mostly it is a minute or two.  Then he calls and asks again.  Over and over.  The words always follow each other in quick sequences but the pitch and the volume change.  When that happens, I have to stop writing.  My thoughts are shattered into pieces and words escape me.

Robert gets quiet, then makes siren sounds of alarm and protest.  That pierces my ears and my soul, or whatever it is left of it.  If I felt better I would occupy Robert somehow.  We would study, sing, do puzzles, or play Trouble.  But my short, forced breath leaves me drained.  So I just watch Robert from the distance.  Currently, he lies down in a bed and watches something on Netflix on his IPAD. I stopped writing.  I don’t know what to write.  I am waiting for the next scream or the sequence of another dramatic crescendo  “dad, dad, dad, dad”.

There are a few minutes of calm.  Robert went to check laundry in the basement.  He also opened the garage to check on the car.  He tries to figure it out. Now he comes and asks again, “dad home, home, home”.  I explain that dad is somewhere on interstate 95.  Maybe still in New York State.  Maybe already in Connecticut.  I just called.  They are still in New York State.  Four more hours of his anxiety.  Four more hours of my confusion. Or his confusion and my anxiety.   Time seems to stay still. Robert is worried about his dad.  I worry about Robert.

Robert’s grandma call.  They are already in Connecticut.  I showed Robert on the map where they are.  He took the information calmly.  For now.

Since Robert started watching Home Alone on TV, I decided to wash some of the refrigerator shelves.  I was supposed to do that on Thursday in preparation for the arrival of frozen or fresh turkey.  But I got sick and didn’t do it.  So I started now.  Robert soon came to the kitchen looking over my shoulder.  The only thing to do was to keep him busy so I asked him to wipe dry each shelf.  And he did.

Hour later.  Robert continues to ask for dad, but in a calmer way.  No more dramatic crescendos. I keep showing him on the map where dad and grandma are .  I reminded Robert that we usually stop at the service area close to exit 40.  That rang the bell.  Robert got calmer.  Now, I told him that dad and grandma are already in Rhode Island.  Robert wanted to bring me my shoes.  Now, I understood the reason for that. Robert  believes that since dad traveled in the train he has to return in the train, so he wants me to drive to the station for dad.  The idea of the third car, grandma car, as the mode of travel somehow didn’t register yet.

I took out kale from the refrigerator. Robert said, “Dad, dad, dad”.  He wants me to cook knowing that this is the dish his dad likes.  Cooking food for dad assures that he will come soon.  So let me cook.  I do that while washing my hands every few minutes.  The most importantly, Robert is calmer.  He keeps asking but not screaming and he continues answering my questions. Calmly

-“Dad, dad”

-“Dad is in Rhode Island.  Where is dad?”

-“Rhode Island”

-“What is he doing?”

-“Driving”

-“Yes, driving with grandma.”

After, I understood why Robert wanted us to put on shoes (to get to the station for dad), I was able to explain to Robert one more time that dad is not coming on the train but is coming in the old grandma’s car.  Robert must have understood because he stopped asking for shoes but instead he wanted to write in his journal about last four days. Then he decided to take the bath.  Now he is in the bathroom getting ready for a tub.

Robert’s ability to calm down gradually, to express his anxiety in a composed way is a new development.  I have not expected that. I expected 4 hours of dramatic calls and sharp sounds.  I don’t know what helped this time.  Maybe maps I kept showing Robert which I connected to his memories of our past trips to New York and back.  Maybe regular calls from his grandma which informed us where they were.  Maybe it was my resigned attitude he might find calming. After all, I still have cold, although it is getting better.

 

On Differences and Similarities

November 8, 2017

In the past, Robert and I practiced understanding of differences and similarities a lot.  I made copies of the pages from Developing Awareness of Similarities and Differences many times

and a few hundred times I read directions which asked to circle either:

another object similar in specified aspect to the first one,

two objects similar in specified aspect to the first one,

or an object which differed from the first one in respect to a specified feature

I asked and Robert kept circling.  Sometimes correctly, sometimes not.

He had most difficulties when he had to switch from one group of directions to another one.

A month ago, I decided to practice with the same book again.  But I wanted to use the book in different ways.

Firstly, I asked Robert not to listen to my directions but to read them and follow them without my interference. Or rather my minimal intrusion.The tasks were easy, and thus were a good starting point to weaken his dependence on my presence.

Secondly, each of the three pages I gave Robert to complete asked for a different action. I wanted Robert to discriminate and flexibly switch from one kind of task to another.

Finally,  we used the back of each page which had only drawings (without written directions).  While looking at those pictures, Robert was supposed to  ask me which object had (or didn’t have) a specific feature.  I wanted Robert to exercise his ability to memorize and recall facts. More importantly, I wanted him to use the language as the way of initiating conversation and that of course includes asking questions.

November 21, 2017

After completing Developing Awareness(…) we switched to Developing Alert Listening Skills.  We practiced with that book a couple of times a few years ago.  I mostly followed the simplest script.  I read the instructions, Robert followed (or attempted to follow)  directions sadly with minimal usage of language.  It was a very passive activity indeed.  During every session we do  in  four pages according to the arrangement of the book. First page has directions to be completed on the next three worksheets.  Robert reads first set of instructions to me aloud.  This is the most challenging part.  I try to understand what he says and on the second page .  That is not easy and often requires Robert to repeat a word a few times. Before, however, he does that, we practice with pronunciation of a few  words that are used the most often, “Put, underline, circle, cross, find” . The next two sets of directions, I read to Robert, because they are longer.  Still, Robert is expected to state what is he supposed to do. Robert likes this activity best when Pam joins us.  Three of us switch roles of teachers and students.  Robert thinks it is funny.  Maybe it is.

 

 

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.