On What I Wanted and Gave Away.

I made a wrong decision.  I hastily  withdrew my son from the last two weeks of the best program he had in years.  In many ways that was a program that I always wanted for my son.  It was only a summer program but it addressed most of my regular concerns.   I was fully aware that it was  the most appropriate program for my son even as I was making this badly choice.   I am not ready to explain myself, yet, instead I will concentrate on  describing  the differences between Program A (summer) and Program B (regular school year). I do hope against my past disappointments, that there are some teachers,  not even necessary my son’s teachers, who would find this post thoughts provoking.

Program A. Robert was in a group of students not much different from him.  Well, of course they were different, but they had some similar characteristics.   Many of the students were there  previous years as were some of the teachers and their aides. There was some continuation.

Program B. Every year the classroom changes dramatically.  From three students to seven, with very different educational needs.  Teachers change often and so do their work habits. My son differed from other students so much that everybody was aware of it and acted upon that knowledge.  My son was very lonely.

Program A.  Teachers had years of experiences teaching special needs population. One teacher worked there for years, the new one  came with years of experiences from other settings.  They enrich each other perspectives.

Program B  For two of  the teachers, Robert’s classroom was the first they were in charge of. (consecutively, not at the same time) They did not receive any support from other qualified special needs teachers, as they were simply too distant. The third teacher announced that he had never worked with students as difficult as Robert, so I assumed that he did not have relevant experience or training.

Program A. Robert worked in a small group and was able to demonstrate to his teacher and his peers that in some area he is on similar level as his peers.  He showed that he was an ambitious and hard worker.  He learned to be proud of himself.

Program B.  I don’t know much about this aspect.  I know that he worked one on one, and might be in group sometimes.  I don’t know how he presented himself to other students.  This is an important aspect as the way student is perceived by his/her peers affects how they relate to him.  But I don’t know that.

Program A. The teachers communicated with me constantly telling me about good thing and sharing areas of concerns.  I learned that Robert is good at long division but also that his obsessive behaviors   which forced him to close all the doors and drawers was of concern.

Program B.  During the last two years. I don’t remember ever hearing that Robert is good at something or that he has particular  constant behavior problems, which  would require an  intervention or behavioral plan.

Program A. Every week there was a well planned field trip.  Those field trips were taken to places that extended young adults’ horizons – going kayaking, going to Quincy Market for food and history lesson, going to Museum in Rhode Island.  Robert missed, because of my decision, the trip to Kennedy’s’ Library and to Myles Standish State Park.  I regret that deeply, because it is not something his regular school would even consider for Robert.

Program B. The trips from school are mainly to the same places, week after week, and  tend to center around food and restaurants.  Those field trips  don’t extend young people horizons.

Program A.  The speech therapist initiated contact with me both last year and this year.  She is in the classroom almost every day for extended hours. She is familiar with assistive technology, just to mention one aspect of her work

Program B. I had to ask for meetings and observation. Never initiated by therapists. The therapist s came for a very limited hours every week. None of the three speech therapists knew how to program  Chat PC which was bought by school in 2006.  In 2012, it was sent home, broken and unusable. It was only  used as a tool for so-called “communication  repair” and  that means like a typewriter.  The 1.99 APPS called Speak It, can do the same. Although I programmed Chat PC  for school with greeting, basic questions to encourage communication with peers,with presentation about Robert road trip to California I don’t think it was ever used to help Robert communicate.

Finally. after I made this decision.  I informed administration of Program A and Program B.

Program A:  Both teachers wrote e-mails encouraging me to change my mind and asking  Robert to return. Both teachers were concerned with the effect of my decision on Robert.

Program B.  Nobody wrote, nobody called.  It was not surprising.  My decision allowed the school to save money.  And this motivation – to save money – is what affects Robert’s education. Program B, only benefited from Robert’s loss, and my error in judgement. In program B I had to constantly fight for the most basic educational rights.  When I abandoned that fight, the school was only relieved.  And I did not have anybody else but myself to blame.

Of course, I had a reason to withdraw Robert, but that reason had less to do with program A, and much more with 18 years of experiences brought by dealing with Robert’s special education.   That is a thorny path, a slippery slope,  and painful climbing, that leads in cycles  over and over back to the point of entry.


The Three Times my Son Cried

I don’t think my son cried more than three times in his life.  Yes, there were times when he  screamed often from either unexplainable pain or frustration.  It was hard to witness his distress, even more so because nobody knew for sure what had caused it and how to help. Very hard.  But there was nothing harder than seeing my son cry. I am not counting his baby cries. He cried like babies do.  There was nothing special about those cries and I don’t remember them at all. I remember those three times he cried after he turned 2,

1. Robert cried the night after he had gotten lost in Boston Commons.  ( Don’t Blink) It was only an hour or less, but for his sister, his dad, and for me, it lasted for eternity.  He did not show any signs of distress when he was found  close to the huge playground he remembered from previous visits.  He walked with me trying  to skip and to wiggle out of my hold.  He seemed happy although, he did not appreciate his movements being restricted. It seemed that the whole experience did not have any effect on him.  But that night,  his cry woke us up.  It was a cry of a lost , abandoned, scared soul.

2. He cried another night, just a few years ago.  He shed the same kind of tears of being scared and abandoned.  Maybe he had a nightmare.  Maybe he experienced something during the day, he was not able to share.  Maybe he missed his father who after loosing  job in Massachusetts, worked in California.  Maybe he missed his sister who was studying in Oregon. I did not know.  I still don’t know.  I just held him in my arms until he stopped and  fell asleep.

3.My son’s most excruciating cry was of my doing.  He was twelve years old.  My husband and my daughter went on a two-week long  trip to Mexico.  I don’t remember exactly what had happened that in ther end resulted in my son’s uncontrollable sobbing.  I know  that his crying was preceded by some  OCD behaviors.  I remember  that two different parts of the house needed my immediate attention as there was a leak from the toilet and a broken glass somewhere.  I know that Robert tried to fix everything in his own way which scared me even more.  I remember him going to the garage and getting a plunger.  I  know that I had a feeling of immediate danger.  I was running from one end of the house to another attempting to prevent something.  I don’t remember what it was, but I was exasperated.

And I showed it.

I am not trying to excuse the rumbling which followed by telling that I was exasperated.  I think there is hardly anything worse than showing a child – typical or with special needs – that you are exasperated with him or her.  Nothing worse.  But I was exasperated and I showed it to Robert.

I started rumbling like an angry victim or a prosecutor accusing a criminal. I was like a psychologist coldly diagnosing someone as a psychopath, and thus being beyond redemption.  I was not even  loud but I showed my exasperation in the worst way.   And that was when Robert began to weep.

It was as  if the dam was  suddenly broken and the tears gushed not just from his eyes but straight from his heart.  As if all the emotions, he could not express for the first 11 years of his life, suddenly became unbearable. and broke through iron and concrete fortifications.   He was crying as if he was telling me, “I don’t know how I should live.  I don’t know how to move.  I don’t know where to go.  I don’t know what is my place in this world.  I don’t know who I am. ”

Even now, 10 years later, I still cannot get over that cry.

I am not always sweet mother to him.  I am not afraid to say, “No” to Robert, refuse him something.  I do tell him that I am angry when I am angry and I tell him why.  He is, more or less, tolerating that.  Sometimes, he negotiates his own way, sometimes he accepts my decisions.  Sometimes, by making groaning sounds he shows me that he is angry too. Sometimes I am still exasperated.  But when that happens, I either avoid showing my feelings to Robert, or I tell him precisely  which of his actions made me angry.

I don’t  ever show my EXASPERATION WITH Robert.  Mainly, because I am never exasperated by him. I carry his cry with me all the time.  I understand that everything Robert does, no matter how it looks to those who don’t know him, comes  from his understanding how the world works and his efforts to fit in.  That might be a wrong understanding and it might cause some problems but it is never, never  malicious.