Venturing Outside After the Storm

Over the years, Robert  displayed a few difficult behaviors in public places.  Very few.  Nonetheless, they always left marks. Like  shadows or dense mist, they tainted the world outside presenting it as darker and riskier. Those episodes always shook me to the bone.  It was hard to regain posture or pose after they happened and even harder to imagine going out with Robert again.  Even understanding Robert’s motivations and actions didn’t make venturing out easier.

there is no other option, but to go out again and again and again

I wrote about our shopping pitfalls at  https://krymarh.wordpress.com/2012/07/11/all-the-bubbles-in-the-world/ . I wrote about Robert’s terrifying disappearance during a family stroll in Boston Commons at https://krymarh.wordpress.com/2012/04/07/dont-blink/.  I could write more, much more, but the only important thing is to keep going out again, no matter what.

I wrote about our Monday’s visit to the optometrist to order a new pair of glasses at https://krymarh.wordpress.com/2013/08/29/looking-through-empty-frames/. Very stressful event.  Even more stressful because I did not expect it.  The last time something similarly difficult happened was in early summer of 2006. Seven years earlier!  And like seven years earlier, I was shaken to the bone.  I lost and motivation for going out with Robert anywhere.

But like seven years earlier I knew there is no other option, but to go out again, and again, and again.

So on Tuesday and again on Wednesday, we went out.

On Tuesday, Robert was not entirely himself.  He was still digesting what had happened on Monday at the Optometrist’s. It was important, however, that we keep similar schedule so we studied  for two hours  with the help of a few sets of language cards: Synonyms, Changing Nouns to Adjectives, Making Predictions and a few other. A lot of talking.

In the afternoon, we drove to the Zoo.  But instead of  Roger Williams Park and Zoo in Providence, which we had visited many times,  I took Robert to the Franklin Zoo in Boston.  I chose Franklin Zoo  to let Robert see different animals (tiger and lion).  I chose this zoo, to break Robert’s habit of making a purchase of watermelon flavored lemonade to be the main attraction of the zoo trip. I wanted Robert to refocus on animals.   My main reason, however,  for choosing Franklin Zoo was to venture out of our routines, even if that meant to step out of MY safety zone.  I needed to take Robert to a place that would be as new for him as it would be for me.  I needed to explore new  paths of the new zoo just to expand the space in which Robert feels comfortable.

I wanted to show Robert and to demonstrate to myself that it is OK to not always know what is at the end of the path. Of course, that was not a dramatic change.  It was after all zoo, just like Roger Williams. How much different could it be? On Tuesday, it was as different as I could tolerate.

It turned out to be a very pleasant afternoon. We consulted our maps to find out  where we wanted to go.   We meandered around lion’s, tiger’s, and camels’ enclosures, visited pavilion with apes, compared  Bactrian Camels to Dromedaries  (two humps versus one hump), and mistook ostriches for emus.  Robert noticed a restaurant. “Fries, fries”, he asked.  “We will eat home.  We came to the zoo to look at animals. We will eat home.  Chicken and potato with cheese.” We continued walking and watching before   very pleased with ourselves, we returned to our car.

On Wednesday morning, Robert and I practiced with clock and time zones. We used three other sets of language cards practicing prepositions, synonyms, and changing nouns to adjectives (for fluent speaking). After lunch we went to Old Navy to buy clothes for Robert.  I believed that for Robert, buying clothes was an easier to accept variation of ordering new glasses. Before we went, I reviewed with Robert the whole process: look for a right size, choose clothes you like, try them on in changing room, see what looks best, and pay for it.   Everything went so smoothly, that we left after 15 minutes with two cheapest T-shirts.

As we were leaving the store, Robert looked at me as if he were saying, “See, I can do it.  It is easy.  Not a big deal”

He was right.  It was not a big deal.  Or was it?

Looking Through Empty Frames

It was nothing really.  Robert JUST wanted to put the glasses away in their place in a display box.  He did not want anything else.  Just this.

But

He was very dramatic.

Extremely dramatic.

And loud.

And forceful.

And quick.

The fact that the new pair of frames  was removed from its rightful place in a display box and was put in the optometrist’s hands meant that the world was falling apart.  Even worse, it might signify that he, Robert, would get a new pair of glasses.  After all, he knew from past experiences, how those things usually ended.

So as soon as the optometrist placed the glasses on the table,  Robert grabbed them and carried to the display an to the wall.  After he did that, I asked him to bring the glasses back.

Reluctantly, with many loud protests, he did. Then he took them again and carried back to the enclosure on the wall.  SO, I asked again to bring them back. As reluctantly as before, with as many grunting noises as before, Robert brought them back to the counter.

Asking Robert to bring the frame back was the only way to rectify situation.  He would not let anybody else do that.  Only he could bring them back.

The optometrist was filling a computer forms and from time to time looked at the frame.  It was clear that this would take a few more minutes.  Too long.  I encouraged Robert to wait outside with his father.  But Robert could not abandon his responsibility as a guardian of the Universe when the empty hook in a display box was warning him  of the encroaching chaos. No, Robert couldn’t leave. not yet. Getting more tense and anxious, he watched optometrist’s writing on a computer until it was just too much to bear. Suddenly, Robert reached over the counter trying to pry the frame from optometrist’s hands.  We did not let him. A short struggle.  Robert calmed down. I kept explaining why he could not do that.  Short sentences, one or two arguments, artificially assertive voice.  I repeated the same sentences two or three times. I wasn’t sure what effect my explanations had on Robert.  It seemed that he at least calmed down.  The optometrist noticing how a big deal was that to Robert wanted to give him the glasses.  But since Robert was already accepting the outcome – either as a defeat or as a lesson – there was no point of giving him glasses.

After optometrist placed the frame in the envelope and hid it somewhere, Robert went for a short walk with his dad, but returned exactly when I was choosing frames for myself.  He watched me trying a couple of new frames, bringing one of them to the counter, and passing it to the optometrist.  Robert was tense, but did not protest.  He was  not convinced that it was the right thing to do, but the protests were to exhausting and left unpleasant aftertaste.

It had to be said, that Robert doesn’t like to be dramatic, he doesn’t like to grab things from others.  Such episodes drain him and leave him confused if not ashamed for at least two days.  He doesn’t like doing things he feels forced to do.

I did not expect this outburst to happen.  Seven years passed since I witnessed similar behavior.  I believed it would not happen again. I believed Robert knew better.

After all there was a steady progress.  For instance, for at least year,  Rober thas been able not only to buy clothes, but also  try them in the store.  I did not assume that getting a new pair of glasses would be different.

I don’t know all the triggers or variables that control  Robert  actions and reactions.  But I  know the next time will be easier.  As strange as this might seem, this was a lesson to Robert, that taking the frames from display doesn’t lead to a disaster.   It was also a lesson on how to buy a new pair of glasses.  Robert will remember the sequence – trying frames, choosing one, giving it to the optometrist, looking through strange binoculars, waiting for forms, and  paying.

As hard as this Monday’s  afternoon  was for Robert and me, it was a step forward. Lesson taught and lesson learned.

I just wish that the lesson was simpler and much, much easier.

Reflecting Smiles

There was a little commotion just before they met.  There were two restaurants on the short street.  When we made arrangements, we gave the address of one restaurant, while we meant a different, the one where  we had met a year before. So we checked one restaurant and we were on a way to the second one, when Robert noticed Mrs. Scott crossing the street in our direction. He stopped for a second and smiled.  SMILED.  SMILED!!!!!

The smile shoot straight from his heart and brighten the day.  It was magnified by Mrs. Scott’s face, as always, expressing acceptance and admiration. Robert’s happiness  amplified her smile in return.

I stood just a couple of feet from them and could not but marvel at the beauty and sheer joy of this encounter. They looked at each other, the retired teacher and her former student, pondering  the miracle of seeing each other again.  You almost could see sparks of joyful energy traveling back and forth  between them.  A few times, I tried to interrupt reminding them about lunch and the restaurant, but I backed off before finishing the first half of the sentence.

I don’t know when finally, we all ended up in the restaurant. I know we had very happy and pleasant time.  It was the kind of time Mrs. Scott and Robert used to spent together at least once a week, before she retired and moved to Vermont.

I always knew how much he loved her, but I did not realize how much he has been missing her in his rather wordless world.

It should not surprise me that Robert, in his taciturn ways, kept longing for Mrs. Scott all this year.  He is a sensitive and loving young man and he is capable of reading other people’s feeling toward him.  He knew that Mrs. Scott accepted him from the start, admired his ways of navigating his world, and well…. loved him too.

She looked at him as if he were the absolutely unique, wonderful human creature who was making the world around him better, more beautiful, and  more thoughtful.  There were very few people who looked at Robert with joy and acceptance.  There were very few people who cold bring up Robert’s smile.

Before Robert met Mrs. Scott for the first time in November of 2006, he went through long months of feeling like a helpless troublemaker.  The more he wanted to do good, and fix his environment, classroom really, the more problems he caused.  He knew it, but couldn’t help it. He was lost.  He was frustrated. he felt obligated to go to school every day, but as he was approaching the school’s building his steps became slower and heavier.  The fact that I took him out of school, only replaced feeling of failure with unnecessary solitude.

Mrs. Scott understood his frustration and his loneliness.  She decided not to let him be unhappy.  Every time, she looked at him, she radiated acceptance and thus she provided emotional safety net for him.  And she smiled.  She smiled a lot.  She smiled from the center of her heart.

Her smile brought Robert back.  He could smile back.

But he doesn’t smile often.  He is tense while approaching new situations, he watches carefully environment, he follows responsibly what are his chores, he tries to understand the logic and the facts.  Somehow, his teachers, don’t think happiness is the most fundamental part of learning, accepting and adjusting to the environment.

Robert doesn’t smile often,

There is a challenge for us, his parents and his sister, there is a challenge for whomever he will meet in the future, to elicit the same kind of smiles from Robert, which Mrs. Scott could bring on with the tiny movements of her face muscles and a spurt of love and bliss from her heart.

Home, Home, and Home Again

On Monday morning and again on Saturday evening, Robert asked for home. “Home, home.”He said during long ride to our appointment in Boston.  He was anxious and kept  repeating, “Home, home”, as a demand (I would rather go home.) and as a question, “When will we go home?” I kept reassuring him that we would return home after we talk to somebody in Boston.

“Home, home (?)”

“First we go to Boston and  talk to someone.  Then we will go home.”

“Home, home?”

“First we go to Boston and talk to someone.  After that  we will go home.”

“Home, home.”

“What about home?”

“Boston.”

“You right.  First Boston, then home.

I don’t remember Robert asking for home, when he was in our family car, even hundreds miles away from home. He did not ask for home in the airplane. He did not ask for home in New York City buses, subways, or cabs. Robert was anxious as if he felt that this trip was more than a simple travel to Boston and back. It signified change, a step into adulthood, and whatever that might bring.

Restless and confused, he asked for home as a reassurance that things would return to normal, to predictability, and to safety.

On Saturday evening, in the apartment of his grandmother, he asked again, “Home”. Just like that, one word. When Robert uses  one word it means that he thought carefully about his request because it was an important one. It was unusual, Asking for home while at his grandmother’s apartment and expressing his wish with just one word.  When Robert visits his grandmother in New York, he asks for many things, for Metropolitan or Natural History Museums for Central or Hudson River Parks, for a Broadway or off Broadway Show (preferably Cirque du Soleil),  or  for a restaurant.  He has never asked for home. Last Saturday night, he said, “Home.”

“We will go home tomorrow.”

Robert accepted this answer and returned to bed.  Two more times we repeated that conversation before he fell asleep.  On Sunday morning, it became clear that Robert was sick.

“Home”, he said at eight in the morning.

“Yes, we will pack and go home in an hour”.

Reassured, Robert returned to bed and… slept until noon.

We left around one.  I put pillow on the back seat of the car.  Robert was apprehensive at first since the pillows should stay in the trunk and not on the back seat inside the car, but he put his head on them and fell asleep.  He did not want to eat, he hardly drink anything.

He was hot, tired, and mellow.

He was sick for the next three days, but he did not complain.  He was, after all, HOME.

Confusion with Yes and No

It seems that nothing is clearer or easier than the questions that require “yes” or “No” answers.  There is no room for “maybe”,  “to some degree” “under certain  circumstances one way or another”.

So it seems.

How then I should reconcile those two facts:

1.Robert knows all the math facts.  He uses them fluently and without hesitation when he is adding, subtracting, and multiplying large numbers, or when he divides large numbers by divisors up to 12.  He applies his knowledge while doing operations on fractions or even mixed numbers.

Thus it was not surprising that Robert answered all the questions below correctly:

How much is 5+8?

How much is 11-4

How much is 20 -7

How much is 64:8

And a few more.

2. Robert  made more than 50% errors while answering  any of the following questions requiring “yes” or “no” answers.

Is five plus eight eleven?

Is five plus eight thirteen?

Is twenty divided by four, eight?

I could go on and on, but I stopped after ten questions.  Only three times Robert answered correctly.  A person without any knowledge of math facts would have a 50/50 chance of providing a correct answer.

So what has happened?

Robert and I have been struggling with this problems for years. I analyzed if from many different angles. I came with different answers, which in the end are only hypothesis, I am not sure how to check.  Is the  attention, a culprit?  But then why Robert pays attention to one sort of questions and not to the other?

Was my (or someone’s before me) method of practicing answering “YES and NO” questions a cause of Robert’s confusion?  For instance, when I used cards as so-called “visual support”, I probably bewildered Robert even more. Imagine a question, “Can a giraffe fly?”  illustrated by the picture of the giraffe seating high up, on the tree.  From the picture you clearly have to deduce that yes, it can. How would a giraffe make a nest on the top of the tree, if it did not fly there?

But even more realistic photo of a bird perching on the tree, doesn’t help Robert answer the question, “Do the birds fly?”  as the only bird in the picture is not flying in this moment.  So the birds in the picture do not fly.

Unfortunately for Robert, the people around him consider “Yes” and “No” questions the easiest tool to gain basic information. Those questions  Robert heard very often in the past and he will hear them frequently in the future.  Robert’s answer, however, are not reliable source of information about what Robert knows, experiences, feels, needs, or wants. There is no way of avoiding them, so Robert should learn.

I should teach him.

I don’t know how.

Not yet.

Waiting for the Ride Home

Last week, Robert and I were driven to MBTA agency so Robert could apply for RIDE.  We were picked up at our home at 9 AM and driven for an appointment at 11 AM.  On a way, the driver was picking up and discharging other RIDE clients from Boston and its suburbs. we waited 30 minutes for the interview. It was short and pleasant. Unfortunately, after the interview,we had to wait for almost an hour for the ride back home.   Since it was a new experience for Robert, he was anxious.  However, all through our meandering  all over Boston and its suburbs Robert kept his anxiety in check, expressing it only by saying, “Home, home.”, every five or ten minutes. Waiting for a transportation back home was more difficult for Robert (and me). We waited in the agency’s waiting room, then we walked to the cafeteria (closed), returned to the waiting room only to take the elevator down to the main entrance and to wait on the benches in front of the building.  I had two sets of the language cards.  Robert let me occupied him with those cards, but not for long.  Then we returned to the waiting room and after a few minutes we promptly followed outside yet again. During those 55 minutes of waiting, Robert repeated, “Home, home” probably 30 times. Although Robert was not disruptive in any way, just witnessing his anxiety, wore me out.  The only thoughts that remained in my drained brain were, “Where is the IPAD when you need it?  “Why didn’t we take it with us?” IT would be so much easier to wait if Robert were occupied with his Netflix. Where is the IPAD when you need it?”

Whenever Robert said, “home, home” I responded telling him that we would go home when  the car would come for us.  That was not much of the assurance, as many cars with large logo “RIDE” displayed on their sides had already arrived and left without us.

Just for the sake of my own sanity, I decided to at least use this opportunity to practice elapsed time. During the last 20 minutes of waiting, whenever Robert said, “Home, home” I showed him the time on the cell phone and asked him to count how many minutes until 12:10, the time of our scheduled ride.  First I asked to tell how many minutes to noon and then I told Robert to add 10 more minutes to that number.

It did not go well at first. Robert was distracted and did not understand the purpose of doing the same exercise we had done previously at home.  I don’t think he exactly grasped that purpose by the end either, but every time he asked for home, I followed with the same routine.  And it got easier.

It was 7 minutes to 12:00 and 10 more.  17 minutes.

It was 6 minutes to 12 and 10 minutes after.  16 minutes.

It was 3 minutes after 12, so how many more to 10 minutes after 12. A moment of confusion. . Robert can easily in his mind subtract 3 from 10. He can also subtract WITH the piece of paper 12:03 from 12:10, but here he had to subtract that without paper and pencil.  It is almost the same, but it is also very different task. I helped.

It was 4 minutes after 12, so how many more minutes to 12:10.  it went better but with not exactly.

Two more tries. Robert  became annoyed with those exercises and to free himself from the obligation to count elapsed time, he stopped (for a while) to say, “Home, home.”

I did not mind a few calm minutes of waiting.  Another car with RIDE logo splashed along it side arrived.  Robert got up.  “Home, home?”

As soon as driver called his name, Robert was at the van’s door.

He repeated, “Home, home.”   again during the long ride home, but as he noticed that the car was going in the right direction, Robert satisfied himself with looking through the window.

Shopping

One of the reasons it is difficult for me to write these posts is that very often, I have to deal with past, present, and the future of the topic I am writing about.  As I am writing, for instance,  about today’s shopping, my mind puts it in the context of the past experiences and old observations. At the same time as I am analyzing what has happened today I also plan the next step to address the issues that I have noticed. To make this post easier to write and, hopefully, clearer, I would try to artificially separate those parts entangled with each other.


1. In the past, most of my energy spent during shopping with Robert went toward keeping him seated in a shopping card, preventing him from escaping and running through the maze of the grocery or toy stores. (I did not dare to take him to department stores alone.) I wrote about the most memorable visit to the store and what followed in https://krymarh.wordpress.com/2012/07/11/all-the-bubbles-in-the-world/

2. For a long time I avoid buying articles of clothing with Robert. I mentioned such avoidance and the way we managed to temporarily address that issue in https://krymarh.wordpress.com/2012/06/08/negotiations/

3.  When Robert was already 17 or 18 years old and still reluctant to leave the store with a purchased shirt or pants, I decided to take Robert to Wal-Mart to buy a shirt. This particular store was across the street from Robert’s favorite (at that time) restaurant, Applebee’s. The restaurant was promised as a reward for buying shirt.  With a few reminders of a possibility of lunch in Applebee’s, Robert resolve not to buy a shirt melted.  We left the store with a shirt and went for a lunch.

4. Robert made a few purchases with his sister, Amanda, and with Mrs. Scott and Erin, his past and present skill instructors. That is important, as Robert often assumes that only one person should do a particular thing with him.

5. In 2011, Robert began to go shopping with his small class.  I observed Robert during one such trip and was very concerned. I thought that the way the teacher was directing Robert impeded any possibility of learning to be independent. Robert did not make one movement without being closely instructed.  He waited for the teacher to lead him to the item and  to point what he had to take. It was painful to watch as it was a regression from what Robert already could do with me.  At that time, I could wait in the end of the aisle while Robert went to fetch a particular item from the shelf in the middle or another end of that aisle.  I could follow a few steps behind him, as Robert went from place to place to  get items on his short shopping list.

6. I gave these suggestions to the teacher, during one of our meetings. I asked for behavioral specialists to write a task analysis, but I don’t think my suggestions were ever followed.  I don’t think any task analysis has been ever written or/and implemented.

7. The strange thing was, that instead of motivating me to work harder with Robert on shopping, this observation deflated my will to work with Robert on independent shopping. I never went to observe again, as I felt my presence was bothering the teacher.

8. This is an important observation.  I noticed that when I see the teachers working with Robert diligently I am very highly motivated to join in and support both Robert and his teachers.  When I see Robert being not taught properly, either by purposeful act or by lack of abilities on part of his educators I lose energy to teach.  I still do teach, but almost forcing myself to do so and with limited strength.  This is another negative result of educational neglect which plagues special education classrooms all over the country.

9. I remember that in 2006, for instance, while shopping in BIG Y, which became Robert favorite store since that time, I asked people bagging groceries, to let Robert do it by himself.  One purpose was to keep him occupied, the second was to let him learn.  I stopped doing that, when a person I asked became very upset.  Only then I realized that this was also a man with disability and his work was his pride I stepped on.

10. As I was going shopping with Robert this summer, we began to use self-check machines.  We mostly go to Stop and Shop, as the registers there are more client friendly than for instance in Shaw’s. (We might practice at Shaw’s at some point too, but not yet.) Robert became pretty skillful at finding bar codes and running them through.  He still needs prompts to push a right buttons when he finishes and/or pays with his card.

11. Upon one such shopping trip, I forgot that we bought fruits that needed weighing and entering a code.  To make matter worse, the code was invisible (red numbers, on a bag full of red cherries).  We had to call for assistance. That made me understand that I have to plan our trips much more diligently and do some preparation before such trip.

12. The things to work on:
a. Buying only items with clearly displayed bar code and working on attending to the direction on the screen.  how to begin and how to finish and pay.

2. Buying only a few items (three would be a good number to start with) which require entering the code and weighing the bag.

3.Buying only items that require entering the code and the number of items (when the price is for each item).

4. Whenever such opportunity arises, we will practice summoning help by pushing right buttons.

5. 6,7and more.    After  we go so far, we will work on mixing the three kinds of groceries together.

Of course, there is also a need for Robert to become more independent with shopping for his clothes. But that is a topic for another post.

Recycling, Reusing, Reducing, Recounting Money and Other Gains

Thursday, August 9, 2013

We read a chapter about conservation of natural resources from Real Science Grade 2 by SRA. We followed with taking bottles, cans, and paper to the recycling bin.  We reused two soda bottles by adding a special connector to make a tornado in the bottle.  I kept reminding Robert about turning off TV or Ipad when not in use. He seemed much more willing to do so. It has been a great development as Robert upon waking up turns TV and IPAD on even if he is not watching.  I suspect that he is “waking up” TV and IPAD the same way I am waking him up. Any way, with a prompt, he turned off light, TV, or IPAD.

This way we fulfilled our conservation obligations for a day.  We recycled, reused, and reduced.  In the garage, however, there were still cans and bottles we could return to get  our deposit back.  We  packed them in two large plastic bags and drove, as always, to Stop and Shop.  Only one machine was working. Robert took upon himself to deposit cans, but he ended up confused when the machine became full and stopped accepting cans.  At the customer service we got money ( $1.45) and asked for help.  We waited ten minutes, but nobody came to to fix machines so we took our bags and drove to Big Y.  Robert was a little surprised by the different shape of the machines’ sleeves, but  he found the way they worked entertaining.  He kept taking receipts from machines.  At the beginning he placed them in my purse, but when I told him to put them in his pockets he gladly did so. We went to the customer service desk and Robert exchanged them for cash.  Nine dollars without five cents. He placed them carefully in his wallet. We still had a few bottles which were not accepted in Big Y so we drove to the redemption center and exchanged them for $1.24.

At home, Robert  took money out of his wallet and counted and recounted them a few times.

I, meantime,  reviewed our recycling trip.   I was more than glad that the machines in Stop and Shop did not work.  I was glad, that nobody came to empty them or fix them. That gave me the opportunity to demonstrate to Robert, that things not always work perfectly, but you can still do something about that.  I did anticipate protests that the cans don’t go true,  reluctance to leave Stop and shop with bags still full of cans, hesitation about going to another store, expressing nuisance at stopping at the third place – redemption center.  But Robert was patient, understanding, and accepting world’s imperfections gracefully.

I started suspecting that  Robert too, treated the malfunction of the machines as an opportunity to experience something new, learn more , and demonstrate his own maturity.

I am not sure,  After all, Robert never explains himself.

Decisions and Their Consequences

Nothing seemed to shock the good and caring members of the School Committee more than the words of the Sped Director.

After the former superintendent (in 2010) rejected my request for homeschooling, and the district refused to transfer Robert to any other program, I decided to keep Robert at home because:

1. Every day, for at least previous two months, Robert was relegated to a separate desk  with packets of word searches.  That was the essence of his school education.

2.Packets of word searches were also his homework.  He was bringing them home and instead of learning with me, he was spending long  hours diligently trying to complete his assignments.

3. Every few days, I was called to school to pick him up because of severe self abusive behaviors, screaming, or other disruptive actions.

4.He had two aggressive behaviors.  After one, he was brought home on a school bus in the  company of the  vice principal and the special ed teacher.

5.I couldn’t find out what were the circumstances of those incidents, despite trying very hard to learn and understand.

6.Robert was unable to tell me anything.

It was clear that Robert was pushed by unspecified forces into a chasm and then blamed for falling.

Those were the circumstances which resulted in Sped Director warning me that if I would  keep Robert home, she would sue me for Robert’s truancy. It was that warning that  shocked the members of the School Committee.  Of course, what REALLY shook them was the realization that had the SPED Director and the  former Superintendent agreed to homeschooling, the town would had  saved SOOOOOOOOOOOOOO much money.  It would be such an easy way for a town to avoid its responsibility for  educating a boy who was, after all, a newcomer.  The boy who has been living in this town for ONLY 16 years  has  remained an alien for all that time.   The members were shocked  not by  my son’s plight but by a devastating  financial decision of the administration.

The only argument the  Sped Director used was that Robert, because of his diagnosis, had to be in school, among other students.  He needed social skills.  He needed to learn to communicate.  I could fight  this argument by pointing to a  terrible record this school district  had in that area during three out of the four years.  But I knew she was right.

Robert should be at school. I knew that because I felt his underlying sadness accompanying our community trips. I knew because of the way he observed  small groups of his peers when two of us went to the zoo or movies.

The other students might have ignored him completely. They might have , with the blessing of the teacher or a teacher’s aide, (but not Mrs. S.) shunned him avoiding even going to gym with him, but Robert wanted to be around them anyway.  He didn’t  know how to attach himself to others by building  a communication net.  He didn’t even know how to answer the simplest question but he loved and longed to be among others.

I love to teach Robert.  He is patient and determined to learn.  It has been  gratifying to watch him trying a skill for the first time, or mastering it.  I know, I can teach him and  show him a lot.  I wouldn’t mind our trips to stores, zoos, museums, parks if  the overwhelming melancholy of a mother pulling her rejected offspring everywhere was not unbearable. Moreover,  I knew that Robert also felt this thin veil of sadness

Over the years, every time the doors to classrooms were shut in front of Robert, he progressed academically and even behaviorally through our intensive learning at home.

That happened in July of 1995, when the  preschool teacher  did not want Robert to attend HER summer program.  That happened in the  summer of 2006 when another teacher who just two months  earlier had  professed to liking Robert so much that she had seen no reason for me to look for another program, chuckled at my suggestion that Robert attends HER summer program.

Both times, while at home,  Robert made huge gains.  And yet, I knew the Sped Director was right.  Robert needed what every human being needs, other people around.

The most importantly, Robert  has to learn to live WITHOUT me.  I cannot teach him that, when I am with him 24 hours a day, seven days a week.  As Robert  ages out of the school system and we have to figure out his adult life, Robert has to have people around.  People who can help him and those whom he can help.  People who understand him and trust him and those he understands and trusts, He needs other people so he can, one way or another, share his life with them.

When in 2010, the Sped Director said, “Robert has to be in school, among his peers.”  She was right. Unfortunately, the only place she allowed him to meet other people was the program,  called Forward,

That is why, this summer, Robert and I drive from one place to another unable to escape surrounding us loneliness and social abandonment.

This is not entirely a result of  the Former Sped director threat to sue me for the truancy or her rigid refusal to let me explore other educational options for Robert.

The  creation, by the School Committee and the high school principal of a  waiting room, called FORWARD, had its consequences.

The creation of such program resulted in pushing students into it, for the simple reasons – it existed and it was the cheapest option  providing custodial care or respite  for students. The students were pushed there not because the program matched their needs, but because it was  there.

For three years, I have been fighting to force this program to educate my son.  To teach him being in group and following group.  To communicate better. To be a better citizen.  To understand the world around him – physical world and human world.  Last year, I finally gave up on that fight after seeing that despite huge emotional toll,  little can change.

But there is also a price to pay for giving up.

My son is not prepared for adulthood. He  is not more ready for adult programs than he was three years ago,  But that is not something the  School Committee members and the Principal would ever be accountable for.  Educational neglect when committed by school district goes unchecked and thus unpunished. No school committee member  is  loosing his or her sleep because of my son’s plight.

I do.

So does Robert.

Forgetting Fries in the Science Museum

I promised Robert a trip  to the Science Museum.. He kept asking for it persistently since Monday afternoon.  In the past he kept repeating, “Museum, Museum”  Now he was more precise demanding, “Science Museum”.  Except that his speech was so unclear, that it took me a while to understand him.

In the morning, we studied together mixing subjects and grade levels. Second grade science ( water cycles), fifth grade math ( decimals), and third grade reading. We  followed with our daily routine of  practicing  long vowel  sounds, talking in sentences, expanding them, and asking questions

I planned to leave for the Museum after lunch, but  since  I did not feel well, I waited for my husband to go with us.  During the summer, the Museum remains  opened until 7PM.  We got there a few minutes after five.  Robert immediately pulled his father toward  the cafeteria which, to his chagrin, was already closed and thus did not have fries.  Robert, however,  does not give up  on fries easily.

As we walked through Math section of the Museum watching different surfaces made by the soap bubbles on varied shapes, Robert loudly reminded us about the whole purpose of his trip, “Fries, fries, fries.”

“What did you say?” We taught Robert to answer that question with one word or phrase instead of repeating the same words many times. We pretend  not to understand him, until he says just one word.  Usually, he articulates that one word much clearer than three quickly repeated sounds.

“French Fries” said Robert.

“Robert, we are now in the Museum.  We are not talking about food. We will look at this funny train that goes on both sides of the tracks.”  I pushed the button to demonstrate to Robert  one-sided surface.  He patiently waited until the train stopped and then went to his father.

“Fries, fries, fries”, I heard him from another corner. He was determined and loud.  Robert’s dad was evasive, “No Robert, not now.” “Fries, fries, fries” , Robert mistook  evasiveness for weakness and kept insisting.

I joined them, “We won’t get fries today.   We can go home or stay here and see more.  What do you want, go home or see more?”

“See more”, said Robert, only to ask for fries yet again on the way to the playground section of the Museum.  As it is usually the case, this section is occupied by children even when other parts of the  museum  are  empty.  Robert is too big to mix with excited, running  3, 5,or 10 years old, so instead he checked the strengths of his jumps on the platform connected to the screen by watching the waves he created on the graph.  That caught his attention.  He noticed the connection between his jumps and oscillating curve and kept jumping and watching.  Still, before we reached a section where you build a computer model of a fish,  place it in the water, and direct its movements,  he called for fries, yet again.  This time I ignored it,

We built the fish, maybe even two, and then walked to see other models.  Most of the computers were already abandoned, as the visitors were slowly leaving, so Robert could move from one to another, to another.  And he did.  Sometimes, just for a second or two.  Enough to push a button and see what would happen.  Other times,  he sat and observed longer, as it was the case with computer models of different regions from Alaska to Yosemite. As he moved from monitor to monitor, he forgot to ask for fries.  We wandered through the museum for twenty more minutes searching for the skeleton on the bike and live chicks hatching from eggs.  We stopped at every place that attracted Robert’s attention, and resumed walking as soon as Robert lost interest.   We did not find the skeleton on the bike or live chicks.  Supposedly they were undergoing a renovation whatever that might mean.

We paid for the parking, got in the car and hit the traffic on a way home.

“Fries, fries, fries”, said Robert meekly.  I did not bother to answer.  From the tone of his voice I deduced he had given up on fries already.