More, more more… The things I remember (2)

I read in the comments to my previous post that the routines and Conductors at the Peto Institute were "harsh". In a way I disagree- the exercises you got used to, the women pushed you forward and were expecting you to perform, but they were never mean. Unlike the nurses I knew from Poland they were warm. They were engaging and they showed a lot of personality.  I remember the kids from Israel nicknamed one of them "Crazy Marika". She wore big loopy earrings and laughed about everything. And the name caught on. On her last shift, she sat by our plinths at night to say her goodbyes and you can tell she was crying. One comment I agree with is that people had extremely high expectations and flocked to Budapest like it was the Holy Grail or the mythical Fountain of Youth although the Summer Camp I attended in Warsaw in I think '88 used the same furniture and routine. Yet, it felt less authentic. I remember that my parents adopted the way to assist me while walking a Conductor showed us. With my arms straight out and under their arms they would go backwards as I moved forward. When the women saw how I lean against any kind of back support while sitting in any chair they would have me only sit on things I couldn't rest on to keep a better posture.  There was a lot of singing with these exercises, I think it made me love musicals. But here's a funny thing: while there was a lot of attention to have us walk and sit properly, there was very little effort for us to actually be independent.

They would have us use a chamber pot when we were 9, 10, out in the public area although at home I have been using a toilet by myself for years. They always brought us bowls with water  and toothbrushes to have us wash up right there in the dining area, rather than have us actually go to the bathroom. We never buttered or put spread on the bread. They stood next to us and made our sandwiches for us. We were indoors all day. I remember two field trips, one to a planetarium and one to watch "Pinocchio" and one time we were out on a patio. I was fine with that because every day I was there,A lot is being said about "Conductive upbringing", but can you really have an upbringing of any kind without the parents involved? Mothers and fathers were not really welcome during exercises. They were never shown anything or told what to do. The only parents you'd see would be the fathers from Israel at dinner time, bringing kosher meals on plastic plates. International kids would be the only ones picked up every day. Many Hungarians were not even taken home on weekends. You couldn't not get a feeling that while foreigners did everything they could just to be there and had to pay with dollars even if they were sister-socialist states,  the locals used it as some form of daycare or boarding school....

Speaking of fun times, once they took us to the white floor where the oldest group had some artistic activities set up for us, I think it was Easter. My first kiss happened at the Institute, I believe I was 8... Once my parents left me for the weekend, because they couldn't fly over from Warsaw.. We didn't exercise, but did a lot of arts, crafts and games and the atmosphere was very laid back. But... I haven't finished talking about our daily schedule. After Lunch/ dinner we had one more session left, this one sitting in a chair and working with sticks. I remember how right before they always put the tables away by making them stand in row just like the plinths and then we waited for the floor to dry after they mopped it with a broom with a cloth wrapped around it. I remember how slippery the smooth floors were anyhow and how hard it was to walk with my sticks that had rubber tips at the end. And I remember seeing my mom when a Conductor would have us walk up to her as she was there to take me home.

More, More, More…The things I remember (1)

Andrew Sutton encouraged me to share more memories of my years in Budapest, this time focusing on time spent at the world famous Peto Insitute. It is difficult for me to separate it from other experiences of my childhood. The books I read, the people I met, the things I’ve seen on TV and movies, all I was looking forward to then back then seem to blend in and intertwine. You also need to remember I was very young when I went there.  But I shall try.

I remember kids were assigned to fixed groups. In a fashion similar to a class in an elementary school I saw the same faces throughout my time there. Rarely you’d see anybody added or taken away. A few children from Israel joined us for a couple months. I started on the red floor. Walls, frames, cabinets  of which each one of us had one  for our belongings, had one dominant color, different for every level. At some later point, when we aged I assume, they moved us up and everything was orange.  What I liked is that it looked nothing like a hospital. There was none of that cheesy, amateurish paint job on glass windows depicting scenes from fairy tales you see in children’s wards. We’ve had oversized  Donald Duck comic posters. There were no hospital beds, in fact there were no beds at all. We called the Conductors “aunts”, something that rehabilitation wards in Poland soon adopted. The Hungarian ones felt like “aunts”. The one back home were nurses like the rest of them no matter what they called themselves.  If you recall my experiences in hospitals you can understand why this new safe atmosphere was essential and therapeutic.

I remember that within the group the kids were subdivided. We all did our rehabilitation together, but were separated during school time after morning exercises. Non-Hungarians stayed in the chamber we slept in for more individual exercises with a Conductor, mostly walking around in braces. Younger Hungarian kids studied in the room we ate in, while older had a separate classroom.Accordion door closed at class time separated the sleeping and dining rooms. Although, correction: none of these rooms really served a single purpose. We slept on plinths, which is also where if I remember correctly we did our first exercises of the day. To the people who don’t know what a plinth looks like, it’s very much like a wooden table with enough space between planks for you to comfortably grab them. We would sit up and down, make some other repeated movements and slide up and down the plinth.  Mostly routines from the laying down, sitting up position and getting on and off it. Kata Szvoboda, the Gainesville Conductor explained that the dual functionality of the plinth was part of the design. To have us become more familiar with it.

We were all wearing shorts, so with our bare skin sliding against the wood you could imagine this got painful at times. The uniforms came from the Institute, they were all pretty generic socks, t-shirt and shorts with the  MSI logo stamped on them. They almost never gave us long pants.  The Conductors were strong fierce women. They were dropping the plinths and tables, moving them and stocking them away in the corner in the upright position, like they were blocks. After the plinth exercises we had a session when we did routines standing up, after they’ve put them away. We used the funky  looking chairs with grab bars to reach up, reach down, bend over. They were very light. Few kids fell down hitting their head, myself included because these things tipped over to the side easily.  Then we would separate for class time.

This Attorney is for hire

I don't usually post on Tuesday but I wanted to share this recent development with everyone who follows the things I write. While I agreed to help The Jordan Klausner Foundation prepare for the upcoming Summer Camp, I have decided to no longer be involved with it. I have nothing but gratitude for the family and they understand my reasons for stepping down. The organization had some good times and some bad times. Recently I have been involved with them mostly as a volunteer and my attempts to establish myself as a law practitioner  have suffered as a result. I would like nothing more than to be work with a non profit and help the disability community and I hope that's where my path will take me next. I don't have a job lined up, I don't have anybody snatching me for any kind of position, though I wish they have, but at this stage I can barely afford my own rent. I feel exhausted from trying to do too many things at once. I have not decided what my next steps will be and I am worried. The law market is competitive and I do have a disability that doesn't make me the most attractive hire, but I have hope. Perhaps one day I'll launch my dream free legal workshop for people with disabilities if I ever secure funding for it or start a nonprofit focused exclusively on  fundraising  disability causes. I wanted to thank the Klausner family for giving me an opportunity to do something meaningful, to be part of something wonderful that changed the way I view my own profession. But they don't really need my set of skills right now. I will soon migrate my blog to http://lawyeronwheels.org and I will remain on Twitter @LawyerOnWheels and Facebook: http://Facebook.com/LawyerOnWheels I'll remain in the Gainesville area and as always I'll get involved in as many disability causes as I can. Please say hello.

Modern Parenthood and Disabilities

We live in crazy, busy times. We're always rushing and we want to do it all. A career and a family need to fit our schedules  and we are led to believe that nothing ever suffers as a result. I'm not criticizing anyone for wanting to have a comfortable lifestyle, hey, I like nice things too. But it's hard not to see that for my  generation of young parents the upbringing seems to happen somewhere beside and in between the daily things that distract us. The pressure is great and the drive is enormous and sometimes you can't even afford to do it any other way.  Kids are raised by video games and TV's. I've met children who played Warcraft before they could read. But they get by. Some parents can't really afford to adopt any different kind of lifestyle and work hard just to make ends meet.

My mom quit her job when I was born, but it was a different time. Things seemed to have been flowing a little slower back then. It was easier to make it, although my father did end up getting a second job. In communist Poland it was pretty common for the mother to become a stay at home parent with a disabled child. Mine decided it she needed to to make sure I'd get  all those hours of exercises in a day, extra care and attention and that my brother could also benefit from her presence. My parents gave up, changed their lives and goals for me. Altered where they wanted to be and what they wanted to accomplish. I sometimes wonder if that kind of approach would be possible today. Disability isn't something  that you can schedule. That you can pencil in between your tasks. I've met parents who give their kids maybe two, maybe three hours of physical or occupational therapy a week. And even that becomes a problem.  Getting there, driving, making it work.Now, I'm  not really a critic of these approaches, but as with everything you need to make it a continuous everyday commitment for it all to have any kind of benefit. Doing it twice a week, if that's all you do, probably it is not going to work. I see it with our Conductive Education program too.  For some parents, scheduling and transportation becomes a really big issue and they end up attending our Academy sporadically. They can't make it every day. And yes, the children suffer as a result. Perhaps something is better than nothing, because there is no other way, what can you do?  Disabilities seem incompatible with modern world.

On the other end our Summer Camp is always busy. Parents want to do something that will help their children, that will perhaps make up for an entire year of doing  very little. Because it's easier to commit to something short term. It's doable, workable to do it for six weeks out of a year.  Is it the same as doing it every day for the other ten months? Of course not.  That is the tragedy of our  times. Not to say that these people are bad parents. Some barely make it from day to day. Some are poor and uneducated, some struggle as single parents. As much as you want to help your child  you can only work within the means you have. America doesn't have a social and healthcare system developed in a similar fashion we so in Europe. And yes, it's often criticized, may be ineffective and will probably go bankrupt at some point. But right now it could really help those parents. Conductive Education, the method we use is not well recognized by the medical community, it's not covered by insurance and we don't offer transportation. Those parents are on their own.

One thing I will say for mine. We didn't have much, but they always found a way to make it work, be it extra jobs for my dad or some work in the West. I do think part of it was mentality. My rehabilitation was more an adopted lifestyle than just something we did for an X hour a week, which what it seems like today. In, out, you're done and on to the next thing. Somebody else does it for you. The sad thing is, disability needs that extra time, that extra care and some things you neglect you may never make up for.

March 25 is Cerebral Palsy Awareness Day

I was planning on writing another piece on my childhood years in Hungary, but I didn’t want to overlook the fact that Americans celebrate Cerebral Palsy awareness day this Sunday, part of an awareness month for the condition no less, which may be the only time in the entire year the media is likely to sit up and pay attention. So, what new approaches and therapies have we adopted lately? Is there anything   and groundbreaking to write home about? If you ask me, daily rehabilitation is still the way to go. The American medical community is still not very open to approaches like Conductive Education, but it’s unwise to assume it’s all about the money. I feel it’s understandable that there is distrust and doubt if we can’t produce convincing research to build our case on. Most of the centers I hear of are organized by communities, small groups of parents trying to help their kids. Creating that kind of setting on an ongoing basis is not only expensive (and not covered by insurance) but also requires commitment, certain infrastructure and often complicated logistics. Which, I think, is the reason why it’s easier to put together a summer camp. We talk about Cerebral Palsy awareness, yet still I hear it confused for a mental disability every now and then. You would think that in the West, in the country like America, that creates all those opportunities for people with all kinds of conditions, stories about Cerebral Palsy individuals are frequent. That you get to read about adults who, thanks to inclusive disability legislation were able to educate themselves and raise above it.  Nothing could be further for the truth. I see two types of stories. Adults, who were born with light  CP and were somewhat affected but have always walked, written as an example of triumph  and then tales of those who have to rely strongly on others worded in a way to bring out compassion. Last year the house of a man with Cerebral Palsy was robbed, that’s the only time I have heard he existed. A few months ago I read a story about a student assisting his extremely spastic friends in a range of activities from entertainment to eating.
I  never hear about independent Cerebral Palsy sufferers   accomplishing great things, having challenging careers. I never read about how they were able to improve their condition thanks to hard work and pushing their bodies. Where is everybody else? What are they doing? What are their problems? Have some of them beaten the condition and got out of the wheelchair? Shouldn’t we know these things to create awareness? We talk about babies. And we talk about children. But we never talk about adults. Have they all improved so much that their CP doesn’t matter or is there an actual problem with how we talk about these things. Where are the functional, independent people with Cerebral Palsy, who may be in wheelchairs but it doesn’t stop them?
I didn’t read about this in a newspaper, but I heard about at our monthly luncheon for local attorneys. A man with CP is about to receive an award for his pro bono work from the Florida Bar. Apparently, with tears in his eyes  he was thanking the Bar for being given the opportunity to help others. He’s not functional enough to write but he has gone through law school and has organized his practice directing other people to help him. Now, isn’t this pure inspiration?

The stress, the fear and my body

I've decided long ago to use this blog to help people understand what it's like dealing with my type of disability on daily basis. It might be embarrassing and it can get  private, but I feel the only way I can create some kind of awareness is by being able to talk about myself honestly. I have always feared large dogs. Loud, unexpected noises make me jump. I'm not sure if this is a Cerebral Palsy thing, but I have seen children with my condition freeze up in panic every time an animal came along, even at a distance, a siren went off, a balloon popped or a firework exploded. I've seen kids react like that even  to things we don't really consider threatening like horses and dachshunds. It's not simply that you're afraid of something and your heart is rushing. The feeling makes your entire body tense and stiff, that makes it more difficult to compose yourself. Often it feels like you're fighting your own physicality to make a movement. I don't really have that reaction to most animals anymore, especially at a safe distance. But I used to ride horses as a child, and one of the things you have to do to allow the therapeutic benefits of interacting with them is relax and trust them and letting your tensions go. I had a dog as a child and my parents decided I should have it exactly for that reason- to have my fear of dogs lessen. Now, that doesn't mean than that whenever a pony-sized puppy gets too close I feel comfortable. Dogs sense fear and discomfort and you never know how they will react when  they see a wheelchair if they have never seen one.

Just yesterday a girl let her dog run loose  outside my door and when she asked me if I wanted to pet it, I said: No, and I'd appreciate it if you kept it away from me.  But other things make me tense up even more. Whenever I need to focus on something that requires a great level of precision or care, like spooning instant coffee into a cup that I don't wan't to have all over my counter or holding a glass with boiling hot liquid or a plate on my legs hat may fall off or break. I remember giving a speech in Hungary 11 years ago at the Central European University and while my upper body seemed cool and collected, my legs were involuntarily moving up and down under the table. I was hit by a bus during my first semester in America while crossing the street. I wouldn't attempt it by myself for many months.

Even today there are times when this feeling comes  over me when I notice, "Oh, I'm in a crosswalk". And my right arm gets stiff and heavy, the feeling  of panic comes over me and I have to really press myself to work through it and move. This is what happens when I take a time-pressured exam. My limbs gets stiff, I get red spots all over my face and chest and I'm fighting my body to work with me. The more I do things, the more I'm accustomed to things, the less is at stake or the less personal it is the less it happens. John Quinn in his book "Someone like me" says every move of a CP person is planned. He was born with it, but always walked walked and was able to conceal it. I wouldn't  go that far, but I'm definitely more aware of when  I move and how I move and it requires more effort, especially if I need to transfer or balance my center  of gravity or switch positions.

Making it: The leap of faith

I can't say enough. When I moved to America nearly eight years ago I wasn't sure if I could make it alone. I sure hoped so, but I've never done anything like this before. I was excited to try, but also scared. I threw myself in at the deep end. You never know how and if things will work out and sometimes hope is not enough. I never had to take buses everyday to get places, to figure out how to get from one point to another, to shop for myself, to maintain my apartment in livable conditions, to take care of my wheelchair, to have presentable clothing. My brother predicted I'd be back in three months. I never had to roll myself in a wheelchair around town as much as I did  during my first year in America and I built quite an upper body strength as I mostly have done it indoors before.  They say, you never know what your capable of until you try, but I feel I was lucky. Lucky that my level of functionality was enough for me to make it. That the reality created for me by the Americans with Disabilities act, the world of lift and ramps was what I needed to succeed. When I first arrived here with my parents who came along to help me set up, I was so determined to not have them help me or push my chair, I rolled myself everywhere, up every hill until my hands bled as if I needed to  prove something, to them but also to myself. My mom and dad intended to help to work a routine. To figure out how and which bus to board. But that never happened, because we were delayed by hurricanes, looking for apartments, furniture and essentials. They left and that Monday I had to get to school like I've been doing it for years. And that's all she wrote.

There are some valid criticisms of the ADA. It was crafted to address the needs of the veterans returning from war and was a result of the civil rights movement. It was not written with neuromuscular disabilities in mind. Restoring functionality of an injured soldier and creating the right kind of environment for children with Cerebral Palsy to learn and develop  are two different things. If you're missing a limb you need prosthetics and therapy. Maybe a wheelchair, but you're otherwise functional. That's why you  may need a special bathroom and maybe a ramp to get around. The initial approach was to reshape the surroundings. With disabilities at birth it's more complicated. You're not compensating for some disadvantage - you are shaping a human being. Yes, we  since had Individuals with Disabilities Education Act  (IDEA), and Section 504 of the Rehabilitation Act (504RA) but parents of CP children still face problems negotiating with schoolboards to create opportunities for them. Accessibility, accommodations, everything seems to be more complicated when you have to take into account more individual needs. And it's obviously about so much more than just taking a bus or getting into a building, but it feels like you need to exhibit some level of functionality and independence to use some of those things.  Cerebral Palsy is of of course an umbrella term. As different children are affected in different ways some are more while some are less functional. It’s not only walking and not walking. Some kids speak, some are non verbal. Some cannot control the spasticity of their limbs.  Tensions, contractures. Rehabilitation helps them in different ways and helps them gain new skills, but that doesn't mean they will benefit equally. It's impossible to predict the outcome. Growing up in my mind is not about the result, it's about the process.  You keep optimistic, you keep encouraging and  engaged and  you keep in mind even a minor skill that you pick up can incredibly increase the quality of life.  Work hard and try hard. Every new functionality means a different level of independence. If anything, I think what my parents gave me was to make me functional and not necessarily to have me run a marathon, although they always believed that nothing is impossible. They wanted me to walk.  And I’ve seen many kids walking as a result of years of Conductive Education. I wasn’t one of them, but I’m independent. I’m not disappointed.  That’s what my parents always wanted.I think they’d be happy how I turned out regardless