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The Life Changer

When you have learning difficulties or other disabilities that affect how you perceive the world, does it make a difference whether your teacher is trained in special education?

Throughout my grammar school years, the teachers almost always said they had special ed training.  I don’t know why they said that.  Maybe they wanted to convey a good image or give a sense of security to us. They told my parents they’d taken courses and had special training to deal with children with learning and social difficulties.  It was a regular grammar school that had no connection to special education per se.  In fact, I think I might have been the first disabled student they’d ever had.  They didn’t even know they were supposed to provide me with a variety of resources and assistance.  And we didn’t know either.

We found out finally and eventually, my parents managed to enlighten them albeit with a fight; it seems they felt threatened when my parents notified them that I had certain rights they were supposed to address such as an assistant to help me with the logistics of a school day and with understanding the lessons. I guess they knew they should have known and should have been giving all that assistance and weren’t. So maybe they were worried that if they agreed I deserved those things, we’d make trouble for them for not providing it all those years.  But my parents just wanted me to get the help I needed.

With all that, almost every year, my teacher assured me and my parents that she was specially qualified to deal with me and my needs.   One of my problems was dealing with the other kids. I really didn’t understand what they wanted from me or how to get along.  I was naïve. I didn’t understand social cues or even kids’ demonstrative behavior.  For example, when a kid would slap me on the back, I didn’t understand that it was a gesture of affection. Instead I was sure I was being hit.

Now I look back and ask myself, where were my teachers? Those wonderful special ed trained ladies who said they were well prepared to deal with a special needs student. They never paid attention and if they did, their input never made a difference – never made things better.

At the end of grammar school, I was invited to go through a screening process to ascertain what would be the best school to attend for Jr. High.  We were given a few options and settled on a special ed class within a regular school.  This was the middle ground solution.  At one end was a regular school where they would create a special study plan for me.  AT the other end was a special education school where every student there was in some way special needs.  This middle of the road option seemed like it would give me every opportunity.

It turned out that we were right. When I got to junior high school, that living nightmare of being alone when confronted by kids I didn’t’ understand came to an end. I was put in a class with a teacher who was trained to educate kids with special needs….FINALLY! We had no idea how big a difference it could make.

All of my classmates had special needs, mostly emotional. Typically, in 7th grade I got into quarrels with them.  But now there was a teacher who knew what to do. Suddenly, ‘for some reason’, things started to go more smoothly. She was able to help me feel really god about myself when dealing with the conflicts with the other kids.  She was very warm and supportive and knew how to acknowledge my attributes that went unnoticed in grammar school.

I was really happy that I said things that made her day. She helped me overcome doubts in myself for what I might have done wrong in any situation. Moreover, even when I had conflicts with other teachers and I was in the wrong, she still helped me in every way possible with all the sympathy in the world.

But the thing I treasure from her the most is her teaching. She was the first teacher I understood.  It was the first time I was able to really remember what was taught. She taught me everything from Hebrew literature to stories in American literature and Israeli and European history. I fell in love with stories by such famous authors as Oh Henry and Guy de Maupassant who wrote the story The Necklace.  And I was a person who NEVER read literature!

This teacher changed my life forever. She taught me that I could learn. That I could get along with people and that teachers can really care.

I have stayed in touch with her since leaving the school in 2005.  She came to my big solo performance for my music performance exam last year.  She’ll always be very important to me. And I will always be grateful for what she has given me.

Thanks Rommy.

The Congregation & Me

Background:

This is hard to explain to people who don’t know the local culture of Israel.  Israel is a secular society and a religiously observant society.  Between those two contrasting colors are many shades of grey.  My family is considered masorti or traditional.  We don’t drive on Shabbat, we keep kosher, we observe the Jewish holidays, we attend the national religious schools (except me when I went to a special ed school in 10^th grade. There is no national religious special ed school that I know of.)

I live in a village that is comprised of secular people except for me and my family. So people from outside our village are surprised that we have a working synagogue.  In Israel when you are secular, you don’t go to synagogue. We don’t really have a strong conservative or reform jewish presence in most of the country.  There are pockets in cities and towns where there are lots of Americans and other anglos where there is some diversity. But mostly the synagogues are orthodox – as is ours.

The reason we have a working synagogue and always have, is because the senior citizens along with a few people in their 40’s and 50’s come to pray every at our synagogue for Friday night and Saturday morning services. The reason the senior citizens come seems to be some kind of connection to their faith. They also seem to enjoy the social aspect a bunch of men getting together to pray, chat, share stories and on Saturday to eat and drink at the Kiddush.  On rare occasions, the regular members of the minyon (those who participate) manage to convince or bribe or persuade their children and grandchildren to attend.  This helps bolster the minyon. 

To pray fully there has to be a minion. Meaning, there must to be 10 men over the age of 13. If someone prays alone there are prayers that can’t be read. Usually we are the minimum of 10 for a minyon.  The only time children come out of their own will is for holidays.  And the only time a lot of adults come to the synagogue is when there is a special prayer for the deceased which takes place three times a year. It seems that even people who don’t want to go to synagogue feel some kind of obligation towards their deceases relatives.

My Part:

I and my brother are the only young people who have been coming to the synagogue on a regular basis since we moved here 16 years ago.  In the early years, I went because my parents made it clear that this is the way it was.  Over the years I got used to it.  I also made a friend there.  He used to be youth leader in the UK.  He’s now a grandfather but he talks like a young person and shares his life and endless stories with me as I sit next to him in synagogue each week.

We don’t have a formal rabbi. The person who reads from the Torah and gives a talk on the Torah portion is very learned but isn’t a Rabbi. He is a cheese farmer with goats, cows and water buffalo from which he makes cheese.  He now also consults to cheese farmers around the world.  He doesn’t make it to synagogue on Friday nights because he has to milk.  There was usually some kind of argument about who would lead the service each Friday night.  That is, until they had the bright idea to ask my brother to lead. My brother, Shmuel, went to a yeshiva high school which is a boarding school where you learn all the Torah subjects in addition to the regular ones.  I didn’t go to a yeshiva because at the time I was in oblivion and couldn’t handle the pressure.

Shmuel started to lead the congregation on a regular basis. A while after, he and I shared the job until he left a month ago to study kung fu at the Shao Lin Temple school in China.  Then I became the leader of the congregation.

While my brother was the main cantor, he brought a variety of melodies for the prayers that he had learned in school. Curse him and his melodies. Those tunes have made the job uncomfortably difficult for me. I can’t sing well, and I can’t stand that, even though the other people in the congregation don’t care. I still have to sing the melodies as much as I can because my damn brother stuck the music into their heads. The reason I keep leading the congregation, is because I know it’s a good thing to do for them. If I quit, they’ll go back to bickering.  So it’s a mitzvah. Of course I am aware that it is also an honor and a privilege.  They really appreciate that I come so consistently and that I contribute significantly.  So even though I can’t sing, I guess I make them happy – and that’s a good thing.

My Place in the World

It may not seem like something a 20 year old would ponder, but I bet more young people think about their place in the world than they would like to admit.

I don’t directly think about it but I deal with those thoughts in a lot of different ways. I guess for me it comes in the form of ruling things out. I know that my special ed school and all it represents is not my place. It’s a great place but not mine. I don’t fit in with the students…or maybe I fit in but I don’t really have friends there and don’t feel much connection to the people and the place. The teachers are great – helpful, caring and do their best for us. I am lucky that I was able to go to HS there. But ultimately, I don’t really fit in.

Lots of kids from my school go to live in an assisted living hostel both to learn skills for day to day life and because they want the social interaction with people they relate to. I still live at home because I don’t relate to them and don’t feel it’s my place there. Also, as I wrote in my post http://cpandme.wordpress.com/2010/01/16/to-leave-or-not-to-leave/ for now, home is home. But even my home is not my place in the world. There’s no place like home and I love my family and all that home means but it’s my ‘was’, not my ‘will be’.

 I am in a number of orchestras and ensembles through the city and music conservatory. I get along fine with everyone but I’m not really connected. I love the music, enjoy small talk with the kids and really appreciate the opportunities to play. But these disjointed musical venues for High school and jr. high school students are just not me. I don’t relate to the kids much. I go, play my music and leave.

This week I was pretty busy preparing for my end of the semester performance at the college where I take an ensemble course. I only take part in an ensemble in the college. I’m not formally registered and can’t get a BA because I don’t have a HS diploma (and won’t’ have any time soon).

Last year I looked into music schools. I was accepted to a performance Jazz school. But I do neither jazz nor expect to be a full time performer. My conductor advised me to look at Levinsky, the teaching school with a great music department. I contacted them, explained that I am disabled and managed to get an audition for their ensemble class even though I couldn’t formally register. They liked my audition enough to let me have a chance. I wanted to take more classes but they said I was not skilled enough yet in music theory and other musical matters. I started taking a private music theory class to catch up.

My plan was to get my foot in the door, hope that by being around the college they would like me and let me take more classes even though they have a policy not to let anyone take classes without being accepted into the school formally. The ensemble was once a week for 2hrs. The professor asked us to bring music from our own repertoire for the final performance at the end of the semester. I brought the music for a solo piece with piano accompaniment. My professor accepted it so I played two pieces – one solo out of my repertoire and one that our professor brought for the ensemble. The piece from my repertoire is song based on a section of Jewish literature and is called Shalom A’Lechem – Peace to you all. The other piece was a section from opera no. 47 of Antonín Leopold Dvořák.

The Dvořák piece is with a violinist, four flutes and a pianist. In Israel, students in college are all ages because they serve in the army first and then often travel and then maybe study, get married stop studying, go back later etc. So you have a wide range of ages. The pianist and violinist both are parents. One of the flute players is 29 years old.

Sunday, Jan. 31st 2010 was the big performance. I had the time of my life. Doing this performance project with other people really helped me learn a lot musically and personally. I learned how to adapt to the group as a musician and a person. Meeting new people and playing elaborate music under challenging circumstances really made the experience exhilarating. And if that’s not enough, all the teachers and the players in my group told me how much they love having me around, playing with me, getting to know me. Whereas I don’t connect well to people my age, I have a knack for engaging older people. They say I have a certain quality where I hang around a for a period of time and they sense my warmth and goodness. At least that’s what they say. They use the word ‘neshama’ which means soul. I guess it means they think I am a good soul. I hope I am. I try to be.

After my performance, the head of the music school said that even though I am an external student, he and the school really want me to continue next year and to take a summer course at the college that will help me with my music – Theory and improving my ear – playing by ear as opposed to with notes. It’s call solfege in Hebrew.

My mother has always told me that I have a good soul and if I give people a chance to know me, they will fall in love with goodness. It seems a good soul and skill are a potent combination for life.

Sunday night showed me that I finally found my place in the world. I don’t fit in w/the special ed kids in my school nor do I blend in easily w/the normal kids my age. I was hoping that I would get a break by being included in this ensemble which would give the school a chance to know me. Once they knew me, I hoped they’d find a way to let me expand my studies. Now they have! With people a bit older who focus on music, I am part of the circle and feel wonderful for it. I think that is the feeling of finding your place in the world – of Belonging.

to watch my performance on youtube 

http://www.youtube.com/watch?v=CaTnNvjch5I

http://www.youtube.com/watch?v=gsgWi86wVng

Krav Maga

 It’s thrilling. It’s challenging. It’s fun. It’s difficult…very, very difficult, especially when you have one really strong arm and solid, steady leg and one very weak arm and a shaky leg. I can’t make a fist with my right hand or stand securely enough on my right leg to throw a kick with the left. But I don’t care. I love Krav Maga regardless.

At the heart of my connection to this sport is that fact that Krav Maga is an original creation of my country. I am studying with Shlomi, the son of Avi who is the first student of the father of Krav Maga. And none of them care that I am disabled. In fact, Shlomi also has his own limitations from being wounded while serving in the army defending our country.

 I also love this sport because it is very practical. One of the main points is to defend yourself no matter what your situation is. The objective is to find alternatives to the ‘regular’ way of fighting that take a person’s limitations into consideration. As opposed to martial arts that have a distinctive way of fighting or specific defense positions that can’t be substituted or altered, Krav Maga is all about innovation. (Sounds very Israeli doesn’t it? See START UP NATION by Dan Senor and Saul Singer) All disabled people are really welcome. The teachers like the challenge of helping people with limitations to protect themselves. So this is just right for me.

 I like that it’s body and mind – build up your body, strengthen your mind. I love the Krav Maga center when I train – it’s small, humble and has a personal atmosphere. I enjoy seeing my own progress and I work on the different moves. I’m only at the beginning but already I find the whole who experience very satisfying. Another thing I love about krav maga is that it is the first sport I ever did that was totally my choice and not because it was ‘good for me’. Over the years I did different sports but always with the idea of some kind of therapy in mind. It feels great to have something that is all mine just because I want to do it. In fact, people worried that any martial art or contact sport might be bad for me not only because I could get hurt but because of the pressure on my hand and the asymmetry of my body that could be exacerbated by serious work outs. However, my teacher isn’t concerned. He’s seen people with much more severe limitation learn to defend themselves with this sport.

 So like the man said, YES I CAN!

Coming Attraction

Coming to a Blog Near You: The CP Duo and Their Favorite Sports
Stay tuned: Thurs. Jan. 28.  Don’t miss the action!
 
As you may know, Elyssa and Eldad both have CP. They met a couple of months ago in the blogosphere when Elyssa was introduced to Eldad’s blog, CP&Me.wordpress.com.  Soon thereafter, Elyssa went on to start her own blog, ElyssaOlsen.wordpress.com  Since then, the two twenty year olds have discovered they have a lot in common both regarding CP and in general.  This sparked the idea to write a simultaneous blog post on the same topic.  They settled on their favorite sport.

Click in on Thurs. to both blogs to see their joint posting.  If it goes well maybe there will be more to come from this unique pair.
 
See you Thurs.!

One Source of my Inspiration

I believe in never giving up and in helping people whenever I can.  So I take great strength and inspiration from my country – Israel – that does so many good things for the downtrodden like teaching people in parts of Africa how to use drip irrigation to expand their ability to grow crops or teaching people in Rwanda how to set up a youth village for ‘at risk’ children modeled on the wonderful program in Northern Israel called Yemin Orde.

An excellent example of how  Israel inspires me is the compassionate and life-saving work our soldiers and citizens are pursuing in Haiti.   One week after the earthquake in Haiti, Israel is the only country that has a full field hospital functioning there, with advanced medical equipment (x-ray, respirators, etc.), skilled surgeons and  a pediatric unit.  The US hospital has almost not services.  It has no medical equipment and no surgeons.  As one American doctor said (on CNN), “how is it that the Israelis can send this from half-way around the world and we (the Americans) can’t.  Didn’t they know that in the aftermath of a quake people will be dying from injuries, from infections and gangrene?” 

China sent 50 people and 7 reporters, the UK sent 64 firemen and some private volunteers, and of course there are groups of medical doctors from Cuba, Chile and some other neighboring countries. 

I tried to find out what the Arab States sent.  The combined set of 20 Arab nations sadly sent  nothing. 

In proportion to its population Israel has committed more than any other country in the world to the Haiti emergency  and the Jewish people around the world, who have also contributed funds, should be proud of the Israeli effort.  Even thought we are a tiny country surrounded by people who don’t wish us well, we certainly can make a positive difference in the world.

Last  I heard, six babies were been born in the Israeli hospital, the first one was named “Israel.”  Also, the Israeli rescue team (FIRST) is actively saving lives, pulling people from the ruins of collapsed buildings.  Today they saved a man who had been encased in concrete for five days, they worked for 8 hours non-stop and when he was stabilized, they went to look for more.

Who was it who said “Yes, we can!”?  I guess he meant Israel and its people.

TO LEAVE OR NOT TO LEAVE

To leave or not to leave – that is the question.  Whether it is nobler to be stuck in the midst of a family setting,

Or to seek out liberty and freedom by confronting  the realities of life on one’s own.

What is more precious, the warmth and support of a loving family who seeks the most for one’s well-being but makes demands as well?  Or to be free, out in the world half-hatched?

When is the right time?

How does one decide when they’re ready to soar with the glories and dangers of the world?

These days I have been feeling the need to go out on my own because I am in a stage of life where I feel I want to make all my own decisions.  On the other hand I don’t know if I can handle life by myself.  Sometimes this makes me frustrated leading to conflicts with my parents.  Sometimes I cross the line and I end up all alone.  My brother has no patience for behavior he thinks is out of place.  When I give our parents a hard time, he says I’m selfish.  Not knowing how to reach out and bond with people has affected my relationship with my sisters. We just aren’t as close as we might be.  So when I alienate my parents, I feel pretty alone.

This tells me that I still need to learn how to take that first step in opening up to people before I can forge my way on my own.  If I left home now and went to live in an apartment (even if I could afford it), I think I would eventually become so lonely that I would burst out of my quiet pain and suffering by forcing myself to connect to someone.  This doesn’t seem like the right way to do it.  I guess I have to give myself time to mature and develop my skills.

But who knows, maybe forcing myself to open up is the only way I’ll learn to do it.

Living with one’s family can be challenging sometimes.  But for now I know there’s no other place I’d rather be than home.

Beware the Spot Light

When I was in junior high, the Principle of my school learned from my teacher that I had won a gold and silver medal at a recent Special Olympics swim competition in central Israel.  He made a really big deal out of my success. This made me feel very uncomfortable because in this particular competition my opponents really weren’t at my level.  As a result, my victory wasn’t personally gratifying.  Even in the best of cases, I hate the spot light because I feel too modest to express self praise.  I never know what to say.

Having the Principle choose this time to acknowledge my achievements only enhanced my natural desire for anonymity.  Because I didn’t really know how to share my experience and feelings, it was easier to not have much to do with people.

Out of the blue, at a school assembly, the Principle announced to the whole junior high school that Eldad Shoshtari, a student in 8^th grade, had won a silver medal AND a gold medal in the Special Olympics competition.  He then called me to join him.  I refused to go up to the stage. I was overwhelmed with discomfort as all my issues about not liking to talk about myself flooded my head.  I wanted to disappear into oblivion.  I didn’t know how to be the center of attention. I didn’t know what to say or what to do.  The assembly ended with me remaining in the background.

My teacher, with whom I have a great relationship to this day, insisted I bring my medals to school for the kids to see.  I was really against it but as I said, she insisted. So out of respect for her, I brought them.  I wore them. But I put them under my shirt.  She and other teachers nagged me to pull them out and show them to the others.  As soon as they saw them, kids crowded around me like I was a celebrity.  I wanted to jump out of my skin.  Like a celebrity, I ran from people who just wanted to talk to me and look at my medals.

A week later there was another assembly. This time the High School Principle was in attendance.  Again, my annoying Principle called me up the stage.  This time, I understood, I didn’t have a choice.  He announced that the Principle of the high school was there to present me with an encyclopedia as a way to congratulate me. I overcame my inhibitions and walked though the crowd to the front of the hall.  I walked up the few steps feeling very embarrassed and annoyed at the Principle for putting me through this.  I managed to eek out a few words of thanks. Then, if the stage and the gift weren’t enough, he had called the local city newspaper and had them send a reporter to interview me.  What a disaster! 

The teachers made a giant card for me saying how proud they were of my achievement.  I must say that I was really moved by their effort and that card still hangs on the wall in my room. One really amusing moment was after the event.  I was called into the teachers lounge.  The Principle was there. He asked me to choose two teachers to ‘present’ me with my medals.  They raised their hands, calling out ‘Me, me, choose me’.  I felt like I was in a scene from a movie.  It seemed that this was the scene where we reenacted Eldad getting his medals. I did as I was asked and chose 2 teachers. They then ‘awarded’ me my medals by placing them around my neck.  I guess the Principle wanted to live the moment.     

Of course now I appreciate all they did at that time. I still have a hard time being the center of attention, but I’m working on it.

They Don’t Call Me Chicken Man Anymore

When I was little, I never noticed my crippled hand. Or maybe you could say, I accepted it as part of me in that I didn’t think about it. I wasn’t self aware enough to notice anything in particular.  My only awareness of my hand was that my mother did physical therapy with me on a daily basis and took me to a physical therapist each week.  It was my mother’s endless requests that I exercise my hand that made me pay attention to it as something different.  That fog I wrote about in my post http://cpandme.wordpress.com/2009/11/26/the-fog-of-oblivion-though-elementary-school/ included my hand.  Others saw it.  But I didn’t.  My hand required a lot of work that I didn’t want to do.  It was easier for me when I didn’t pay attention to it.

I have vague memories of being teased now and then at school.  Kids thought I looked strange because the spasticity caused it to contract like the wing of a chicken.  At home we played a lot of games to try to loosen my arm and open the palm of my hand. But as I got older – 8 or 9 years old – it became more and more difficult to relax it.  That’s around the time my brother gave me the nickname, chicken-man.   

When I was a little kid my mother did the work. But as I got older, I was supposed to do it myself.  I despised it but only felt guilty when my mother chastised me for not taking care of my hand.  If she didn’t say anything, I just didn’t think about it. At the time I didn’t really realize why I didn’t want to exercise. But now I understand that I didn’t ever see improvement so I felt no motivation to work at stretching and strengthening the hand and arm.

It all seemed so important to my mother and I didn’t understand why.  I have a vivid memory from when I was around nine years old.  I was driving with my family when we passed someone who was exercising and stretching near the side of the road. My mother said, ‘look, he’s exercising – lots of people do it every day.’  It made me feel that pang of guilt.  It pushed me to try again. But after a short time of seeing no results, I would just give up.

By late jr. high, my elbow had become fixated in a bent position. When I’d run my body tensed up and my elbow bent even more and my hand would curve at the wrist like a claw.  It wasn’t aesthetic but I didn’t really care.

So I guess I can say that throughout my life – including now – having a crippled hand never really bothered me unless it bothered others and they said something that would make me feel badly. It was frustrating at times to not be able to do things as easily as I saw others do them. Nevertheless, I always found ways to overcome the limitation of having only one functioning hand.  I even accepted the need to ask for help now and then. What I am saying is that the problems caused by having one hand were not insurmountable or particularly upsetting. 

What did  bother me was how everyone else (except me) was making an issue over it. At least that’s what I told myself.  There was some ethereal mix of me not being aware, not understanding, yet knowing. 

I had so convinced myself that I was fine the way I was that when the opportunity came along in 2008 to undergo a new surgical procedure that could straighten out my hand, I told the specialist surgeon “my mother wants me to do the surgery, not me.”  We were told that the surgery could help but there were no  promises about how much.  I had worked to so hard to be comfortable where I was, and be happy with myself as I was that I felt change – even for the better – would mean there had been something wrong with what I was. If I wanted to change then it meant I wasn’t happy with what was.  That plus the lack of assurance that there would be significant improvement caused me to be against the surgery.

I had come to enjoy being ‘chicken-man’.   It’s a nickname with a lot of character.  I thought it was a goofy moniker which I felt portrayed my personality.  I saw myself as a goofy guy who gets lost in dreaming of cartoons and laughing at the drop of a hat. 

However, the doctor and my mother asked me to think about how others perceive me.  They encouraged me to think about my future – dating and things like that.  Yet they couldn’t promise my hand would be more functional. On the way home from that first visit with the specialist, my mother talked to me about the fact that I had worked hard to accept and live with a difficult situation and that was commendable.  She said it would also be admirable to be willing to face change and enjoy a somewhat easier path that would come about if my hand were less crippled.

I decided to have the surgery. It turned out to be a great decision.  It’s actually cool to have a second hand – the functionality improved way beyond anyone’s expectations.  It took a year of occupational therapy and I have to keep up the work for the rest of my life. But now when I work at it, I see improvements.  Part of the work is in my head – retraining my brain to remember to use the hand.  When I do, the hand gets stronger and more responsive.  In the back of my mind I know that if I don’t work at it, my hand will deteriorate and could revert to its former state.  But now I’m 20yrs old and I don’t have to hide from my reality.  The great improvements in the look and use of my right hand have motivated me to do what I am supposed to do and my greater awareness won’t let me look for an easy escape.