Tuesday, December 27, 2011

Please support us- impress the IRS!

If you're in America you only have five days left to make a tax deductible charitable donation. Please consider giving to The Jordan Klausner Foundation. We are a small Florida non profit with big dreams of helping more and more children with neuromuscular disabilities. None of our officers at this time are compensated meaning you can be certain that every penny will go directly to the cause. Our main focus right know is the Gainesville Conductive Education Academy, a free school for children with Cerebral Palsy and other conditions. Our goal is to help kids develop and be physically functional and independent enough to transition and succeed in a normal school setting. To become the best they can, which can mean different things to every child based on the extent of their condition and their mobility.

The Academy combines traditional schooling with the Hungarian Peto approach that is very challenging and physical. Kata Szvoboda, who runs the program was trained at the Peto Institute, an internationally famous destination for parents of kids with Cerebral Palsy and is Hungarian. Our program is free for Florida children and competitively priced for out of staters and foreigners. This method is not very popular in the US to begin with and one of  very few in Florida offering services free. We are able to do what we do thanks to the State granted McKay scholarships awarded to our children- but these cover about half of our operating budget meaning we have to supplement it with grants and donations. We can barely afford to run the program at the level we do now and our dreams and ambitions are greater, because the needs of the kids and families are greater. Not only would we like to integrate different forms of therapy into the program, but we see the need for legal assistance for parents and kids with Cerebral Palsy struggling with the education system and all forms of prejudice. James Klausner started JKF not only as a way to have his son, who had CP but tragically passed away remembered, but primarily out of necessity. Negotiating with school boards and providing educational options was then and is now a big issue for parents of kids with disabilities.

We do what we do, because we believe in it, struggling every year, hoping somebody comes along to help us.  Somebody who understands our passion and why this is important. I joined JKF because I was born with CP and I benefited from the Peto method as a child. Today I'm an attorney. I refused to join the corporate world because there are kids out there who are like I once was. I'm not going to change the world but I'm going to help more kids raise above Cerebral Palsy to become educated and successful. But I need help.  I understand if you're not passionate about this cause. We all get excited about different things. One of my friends prefers cats over people and that's perfectly understandable. But if you think you can stand behind us, then let's do good together. It's a win win. We are a 501 c3 non profit. You can help the kids, feel good and get a tax deduction.
You can donate via
PayPal< or Causes: http://www.causes.com/causes/481116-support-jordan-klausner-foundation-help-gainesville-s-disabled-kids.
Even if you can't help financially, please support us by passing this link along and getting the word out. Parents deserve to know that there's hope. If you feel like helping us out in other ways, like organizing events, overhauling our website or our social media presence let us know. If you're a parent or a member of the press come meet us or come to our school. Also, please, visit our website http://www.jordanklausnerfoundation.org  follow us on Twitter: JKlausnerFound of "like us" on Facebook. http://www.facebook.com/jordanklausnerfoundation
you can email me at rstrzalkowski@jordanklausner.org of Facebook me at http://facebook.com/rstrzal

Monday, December 26, 2011

Christmas far from home

Another year goes by and I'm far from home. Today was Christmas, yet it felt like just another lazy day with nowhere to go and no one to see. In America only the 25th is a national holiday and this year it fell on a Sunday. In Poland you get two Christmas days off and things begin to slow down the day before. We have our traditional family dinner on the Eve and this is when we exchange gifts looking out for the first star. Another holiday season in the States goes by. Yet, I don't feel lost and lonely come Christmas- it really feels like Thanksgiving is more celebrated as a holiday although the media can make you think otherwise. Turkey Day always falls on a Thursday so that  guarantees a four day weekend and with the two festive occasions being only a month apart most people only decide to go home once picking one over the other. It has always seemed to me that Thanksgiving is the American equivalent of Polish Christmas Eve- a day for togetherness. While Gainesville was a ghost town a month   ago this time around many people stayed behind. Yes, the buses weren't running and the restaurants were closed, but I get used the idea of popping something from  the freezer into the microwave and I know I'll see all my friends on Monday. A lot of my friends are criticizing how commercialized the holidays have become. I find it strange, religious context aside, that we need certain days to feel or act or do things in the first place. My friends say things like love and family time  should not be represented my things you can buy. I say,  those are the things we should experience all year long. Give, feel and share, regardless if it's Christmas or Valentine's Day. Because to me a family Christmas is a state of mind.  Wherever I go I'll always take it with me. 

Wednesday, December 21, 2011

Is it time for Plan B?

It's difficult when nobody else seem to care about causes you feel passionate about. You try and you try and you try and yet you're always back to square one. I feel like I'm doing all I can to get people interested in helping kids with Cerebral Palsy, to make them aware of issues of people with disabilities,  yet few have listened. I get frustrated not because I think my story is oh-so-inspiring and that everybody should just drop everything, stop and listen. But I think I should be making some progress. I also know that I'm getting older. If I dedicated all the energy I've put into promoting the Jordan Klausner Foundation, I would probably have an office and a practice by now. I also know, the older I get, the more I wait, the more difficult it will be to transition into the legal field. And with every setback, it's hard to not ask myself those questions.  When's enough enough? Should I just give up? I promised myself to be honest on this blog and  it's not always rainbows and butterflies.

People get behind all kinds of causes. Human, animal, inanimate alike. They are all equal in my book and I don't think that ours is any better. But I can't help asking myself how long will we be stuck. Would I be in the same spot ten years from now and when do I finally let go. Why am I doing this, am I just that stubborn trying to get things started against all hope or is there a real chance to go further. Everybody has these thoughts sometimes. And sometimes I say to myself, maybe this isn't the place, maybe this isn't the time. Maybe we just can't get to work, maybe the interest just isn't there?

But I have to go on, because it seems like nobody else will. I haven't heard about a cause like this so I want to continue as long as I can. I can't remember any mass Cerebral Palsy awareness campaigns in the area or any honest discussion about CP education or rehabilitation. I really don't hear that much about Cerebral Palsy in America at all. If we let this go so many parents will go on not knowing that they are allowed to have hope. That they have rights, that they have therapy alternatives. At some point I will be forced to let this go if we can't make it work, but that day is not today.

Sunday, December 18, 2011

Relying on other people.

I'm very independent, although I'm in a wheelchair. I try to get everywhere I can without anybody's assistance and do as much as I can by myself. I don't mind taking a bus even if it takes much longer than asking a friend for a ride. But sometimes I need help. I hate to have to rely on other people, because the situation is taken out of my control and placed under theirs entirely. And there's nothing I can do. They can forget, be late or change their mind entirely. There are places I can't get to by bus, and I can plan for about anything around it, but getting there is often the one step I can't skip. And there's no way to fix it. Sometimes I just have to trust a friend to be there, to come and get me and safely take me home. And sometimes they don't.  They have their lives too, even if they make plans with me, but it leaves me cornered with no alternative, because it's too late to figure out anything else. Desperate, scrambling for a solution.

Today it was a party. A friend was supposed to take me to a get together in a different part of town they were invited to go to as well, but decided to go dancing in stead, probably 20, 30 minutes before picking me up. It was not that I was expecting my friend to take me because I wanted to go. I would've been fine if they changed their minds earlier than the time the party already started. It would also have been alright if we were meeting to go somewhere I can get to myself. Or if I wasn't expected to show up. I was disappointed not simply because my friend couldn't do it, but because of how it was handled. I don't have the ease to move about town freely and I don't think they can understand the sense of desperation when you have to rely on somebody else as a necessary ingredient of that plan; I have limited mobility, I try to make up for it by planning ahead as much as I  can. It is difficult enough asking people for favors, but often I put my fate in  their hands- today it was a party. But I felt the very same way when I was waiting for  another friend to take me to the airport or drive me to take my bar exam. They will show up or they will not and there is nothing I can do.  I make plans in advance, often I have a plan B, but even that often is not enough. That's why I don't like to rely on others. If it's only me and something happens I have made my bed and I will lay in it. I also try to be more considerate if I know others are counting on me. Sometimes I'll be late or I may forget, but I would never leave someone hanging knowingly. I believe in treating people the way I'd like to be treated. Most of my friends are amazing people who come through, but there were situations, like my own Oath Ceremony where someone who offered to help me decided not to 20 minutes before showtime. Being 40 minutes late on my big day is something I never want to feel like again.

Friday, December 16, 2011


I was expecting for this post to do nothing with disabilities, law or prejudice. I simply wanted to rant on about how for four days I managed to survive without a cell phone with limited internet service, a laptop that doesn't charge and a netbook that heats up, freezes and ignores my microphone. But I was wrong. My BlackBerry feels crucial for me and not only for the work that I do and not as a cool gadget. When you are in a wheelchair and you can't move around freely my a smartphone becomes a tool  that allows you to be in touch with your friends, figure out where to go and how to meet them, when otherwise you could simply walk or drive to their house. I was thinking how strongly we learnt to rely on technology to the extent that writing about it becomes a cliche. But, by the same token when you're not as mobile as other people you don't have as many avenues of interactions as they do. And having my cell phone allows me to be tapped into that world. More so than a laptop, because I can be in the middle of the street and get a text message or a Facebook message. Yes, you can say, I remember times when people had face to face conversations or letters. But just think how limiting this had to had been if you have limited opportunity to get around. Waiting at your home for a friend to visit you or having to deal with somebody having to put up with the logistics of transporting you in a wheelchair to a see somebody. Now we can be smarter about our time and connect on different levels.

Yes, I was as confused about the purpose of some of those social tools as anybody else. In the mid-90's I had ICQ. I've had Facebook since 2004, back when it was called Thefacebook.com. With ICQ the problem was that you had the perfect tool to open yourself to the world, but I didn't feel like I knew how to use it. Should I be friends with the random stranger from across the globe that I will never meet and sprend hours online? With all this technology it felt like people should be getting in touch with you all the time. It seems like something should be happening. When it doesn't you feel more lonely than before.

Facebook was even more confusing. At the time it was for students only, so you knew they were your classmates or campus people. But as in real life you have different degrees of interaction on Facebook everyone was your friend. Those who didn't really know you didn't often talk to you much more than they did before. I guess everyone has gone through the initial phase of fascination with Facebook being able to add your Starbucks barista and know everything about them. Or the person that makes your subs. But soon we all discovered that we don't really know these random people and we don't really talk to them anyway. That's when you asked yourself: are they my friends? Should I make an effort to talk to those people? After the fascination wears off, you ask yourself, what is the purpose of being linked to them? And I guess because it felt pointless many have started to delete people from their lists.

I don't have that problem anymore. I think of Facebook as my broader sphere of influence if you will. It's fused with my phone, I use it in stead of e-mail or an instant messenger.  It's a business tool, it's a communication channel; people I work with, people I spend time with are all my "Friends". It's much easier to find somebody there. Recently I was so impressed with the local staging of Chicago I messaged some of the actors. I never delete anyone because even if we haven't spoken in ages they might share an interesting article or post something that will make me want to drop them a message even if they live in Chicago. I don't post embarrassing things, I rarely do embarrassing things,  so I'm not too concerned about being visible to be honest. It was funny how things got complicated because I didn't have a computer I could Skype Verizon the phone company to repair my cell. And then 2 day Fedex service apparently meant that when I call on Thursday I get a new cell on Tuesday.

I sleep with my cell phone next to my pillow. I hear Madonna does the same. I often wake up in the middle of the night to see if the e-mail I was waiting on is here.

If there's anything I miss  from before we were all so connected it's the anticipation. The excitement of waiting for your favorite tv show once a week or a magazine you love to hit the stands. The instant gratification of internet takes a large chunks of that away from me.

Wednesday, December 14, 2011


It's hard to get lost in a crowd when you're in a wheelchair in a small city. Being visible helps my cause and most often I love meeting new people in unusual places and being pulled into new situations. But sometimes you just want to be private. Sometimes you just want to be unnoticed. It was a little shocking to me when I discovered a few years ago that bus drivers gossiped about where they saw me and who they saw me with. Not that there was anything scandalous about what I was doing, but it seemed strange. They see hundreds of people every day, faces they will never remember, yet I stood out. Sometimes you just want to simply ride a bus, get from one place to another. I've had a number of issues with some bus drivers years ago most of whom are wonderful lovely people. And I'm friends with some of them as I try to be civil and respectful to all.  But I also remember a couple of situations when they would take it very personally that I would board their bus at a particular time and not in a good way. Apparently some routes were allowed to shorten their routes on the last run if they had no passengers. Sometimes I would get the attitude and I would be singled out  because I would just happen to be on it. It was not personal to me, I was just using the service. But because they knew me they felt we had some form of personal  relationship and owed them some higher form of courtesy. And all I was trying to do is get home. I didn't care who happens to be driving the bus at that time.
A lot of times people remember me from somewhere. They either met me and we had a conversation on the bus in the passing, they saw me somewhere or they heard of me through a friend. "We were on a bus and you were very funny" is what I get a lot. The sad part is that they are more likely to remember me then I am them. I see dozens new faces every day and I like meeting new people. I take the bus almost every day. There aren't as many foreigners in wheelchairs. And the expectation is if they remember me I should remember them. Now I'm all for making new friends and many people making a lasting impression but most are just brief encounters. At the same time people get on and off a bus, pass through Starbucks every day, never noticed, never bothered. Again,  it's not that being approached bothers me- most of the time I love it when people come up. But sometimes I just wish that boarding a bus or taking a ride in my friend's car wasn't such a big production that always attracts attention.

Monday, December 12, 2011

My wheelchair teaches me patience.

When I first got to Gainesville some of the buses used by the local transit system were older and it was more difficult to board them with a manual chair like mine. The model was called Orion, it had a drawbidge style ramp that had a lock from the outside and a steep incline. Not only were they hard for me to get on but for the driver to operate. They had to push the door in to turn the key and then move the lift around to get it to work. I could see that some drivers struggled with this. Other buses also caused problems- sometimes the ramp wouldn't come out, although on some occasions the drivers didn't know how to operate it. I saw them struggle; On some nights I wasn't in  a hurry but sometimes I was. When I didn't simply have to be somewhere soon, I would say, It's OK, I can wait for the next one. I believe we should all be considerate and understanding and it was not that terribly important to get somewhere. It was my choice not to ride because I was being kind. Some drivers got so used to the idea that I would just let them go that they were just passing me without stopping. Because in their minds I was just sitting on a bus stop  with nowhere to be and I had all the time in the world. Where would I go? All I was left with is waiting.

And it happens even now, I want to say as recent as a week ago that a driver decides that he can't get the lift out without even trying. I don't think he even called it in and the reason why he couldn't get it to work is because he didn't know how to turn the power on. The upsetting bit is not that he didn't know something or that it didn't work, it's the idea that it's OK to leave me behind because you're on a schedule. Using the mass transit over the years have taught me a lot of patience. Sometimes I missed the bus, nothing I do when that happened. Sometimes the bus was late or too crowded to take me or the lift wouldn't come out. My friends would just get tired of waiting and hop on a bike to be there faster. That was never my option. Having to wait for a bus not because I chose to or had nothing to do taught me a deal about patience. Because getting upset or frustrated or irritated would not get me there any sooner. And I really don't want other people to have the power over my mood or how my day is going. I'll get there when I get there, not by choice, but it's my choice how I'll let it affect me.

Saturday, December 10, 2011

I love (the idea of) New York

Every couple weeks a friend of mine tells me we should move to New York. Whenever we get overwhelmed, lonely, lost or bored, the idea of relocating to the Big Apple comes up in a conversation and I understand this sentiment. There must be a place where we all can be happy, entertained, refreshed, fulfilled and loved. In American movies and tv shows New York was the place where people who were all looking for something where finally able to find their place. The problem with Gainesville is that it can grow  old on you. It's a college setting with a very active young bar and music scene. It tends to be cliquish  with the hipster lifestyle becoming more and more prominent. The problem with Gainesville is that it never grows up as you grow older. While we do have a range of cultural of entertainment offerings, the variety is just not there. It's easy to feel older when everybody around you is at most 21; it's easy to feel disconnected when you're no longer in school. And while there are other options the one thing that most people seem to do every night is drink. We look at our friends who live in New York and the active, fun, busy lifestyles they have and think we want to be them. The nightlife, the culture, the entertainment can keep anybody busy and inspired. The galleries, the museums, the restaurants- it really feels like a lot of my friends go out to some of this places many times a week and made it part of their lifestyle. Fun inspiring place that never sleeps.

I have never felt so lonely and so alone before my New York visit (I've been there four times). It's an odd feeling- millions of people and yet you don't connect to anyone there, their lives will go on whether you're there or not. In the movie "Collateral" one of the characters mentions that you could be dead for hours on a subway  and nobody would notice. Like I was cut and pasted from a different story.
Millions of people rushing somewhere leaves you with a cold feeling and I come from Warsaw, which is a big city. But New York was bigger. Felt stranger. More foreign.

I have never felt my disability as strongly as I do in New York. Parts of Manhattan, establishments, even sidewalks were wheelchair inaccessible. The many restaurants and clubs, the magic of the Big Apple was beyond my reach. I couldn't even stroll down street in the eastern side. While I understand what New York is to a lot of people, I will never get to experience it because of my wheelchair. Even the mass transit stations are only accessible to wheelchairs every few stops, blocks apart. I couldn't get lost and fall in love in NYC if I wanted to. And that's a darn shame, too. I think a lot of those big city movies and shows shaped my perception of America. Something I always wanted to experience while I lived in Poland. My mom brings that up when she talks about the reasons why I decided to stay in the States. But she's wrong. I don't get that in Gainesville.

I think of New York as goal, a dream, a state of mind. I could never live there, but I understand why my friend would. I think that's why I abandoned plans to pass the New York Bar. It is more a mythical city for me than an actual place. There's the exciting and then there's practical. I'm not like most people. We love talking about it, because it's different, it's fresh and exciting. I hope my friend will one day get her NY dream. I sometimes think  for her it's also only a concept. Her job is here and she hates winters. But she can make it there. I don't think I can.

Wednesday, December 7, 2011

Living single

My  parents worry about me and it's not that difficult to understand why. No matter how old I get and how independent I still have a disability that makes me potentially vulnerable. They are used to the lifelong mindset that I require special care and attention. I also live half way across the world which is I imagine, difficult for every loving parent. They have limited and fragmented information about how I live and what makes me happy. As nothing major is happening really and all I do is meet people, go about my weekly routines and dedicate most of my time to the Klausner Foundation in hopes for the next breakthrough there's never anything groundbreaking to say. How do you communicate things as trivial as I just had an amazing latte, I had a blast at the bar last night or I saw the' most intriguing person today. All they are left with is that I am single and I live by myself. But that's the way I want it. Small things make me happy and I like my life. Yes, it does get occasionally lonely come holiday seasons when all my friends that usually surround me leave town. But I'm content nevertheless. I used to have roommates when I first moved to America. Originally it felt like I should do whatever I can to be as much accommodating to them as I can so they don't get up and move somewhere else. That is the self image I left Poland with I guess, that I'm some kind of a burden, that I should be happy to have someone wanting to live with me and maybe in turn they will help me with something if I need it. The first problem with this logic is that even though you share a space with someone doesn't mean that they care about you. If anything it gives you an illusionary sense of security that someone is there when you slip, trip or fall. I liked quite a few of my roommates, but they were never home enough for us to be friends. And then you have to deal with somebody leaving their items in the living room, laundry or sink  and the other person not liking it.  Fighting over bathroom, cleaning, counter and fridge space. I also discovered I really don't like having people in my face all the time and I really like being  by myself at certain times. I like people and I tend to be very social, but at at my own turns- when I'm done I'm done. Come to think of it that's how my family was back in Poland as well- we would all retire to our separate rooms for large chunks of the day. Now I live by myself and I call all the shots. I can focus on whatever I want and have my little seclusion. I also have thin walls. I can hear my neighbors pretty well and if needed they will hear me too. I'm also friends with people to my left, right and above me. It is not scary for me to live here. I feel liked and accepted and knock on wood, no major catastrophe has happened. Still, I understand why this may seem scary if your disabled child takes off to a foreign country. It's as my friend who also had a neurological condition explained: it's an additional layer of protecting behavior stemming from the disability, this is how they they show they care. They worry and they want to know more about me. For now, my friends entertain and distract me, while the work for the foundation has to take center stage in my life. I'm on a mission. On some level it's a manifestation of my independence. I don't have to apologize that I have a disability, I can be who I want to be and live my life the way I want to.

Sunday, December 4, 2011

Other people have problems too.

I was having dinner at a local restaurant last week when I overheard a girl complaining about her treatment at the University standing right next to me. She noticed  she was being loud and apologized. Intrigued I decided to join the conversation. She was young, black, she was a student and she had a baby. And I was introduced to a world of problems from a perspective I never knew. And it got me to think. We're used to think in categories. And we tend to frame prejudice and limit it to issues like race, color, gender, sexual orientation and disability. Decades of awareness campaigns and special legislation have made the public develop at least some form of understanding of what the basic problems of these groups are. Constitutional law in similar fashion has developed a number of protected classes that subject the regulating them to higher levels of scrutiny. Having a baby somehow puts you outside those form of protection and understanding. I understand the stares she get from bystanders who seem to think "who is that person and what does she want. I've experienced the looks of pity.

 I know what it's like to wonder what goes through somebody's mind when they see you. For her it's "what  is this young girl doing with a baby" just as much as  much as "is he homeless, is he in trouble" is for me. Yes, people's stares can hurt. I can actually excuse some of the looks  she's getting. The sight of a college girl with a stroller is so rare, some people might just be curious about her story or think it's some kind of a performance. But sometimes, most of the time, we just want to be left alone and not be judged by people we don't know. I can relate to some of the other problems she has every day, while not so much to others, but all is definitely worth to think about. I know what it's like to have a bus driver not very enthusiastic to get the lift out. But for me he has to, I'm protected by the ADA. With her, they've been doing it at their own discretion. And I agree, that the public transit system should have a policy to accommodate strollers. It's not only kind and considerate, it's common sense. It's much more faster and efficient to have the lift out rather than having the mother fold, unfold or carry things separately which takes time, requires strength and is stressful. Having a baby means more than just having a folding table in both male and female restrooms. Some other issues are more problematic; The girl complained  that when attending a show or an exhibition she's forced to buy a second ticket for a baby. She concluded, that they are trying to discourage people from taking toddlers with them and I can see why they would. Perhaps they want other people not to be disturbed, but maybe there should be a daycare/play area to help the parent out?

You can say that unlike other groups a baby is not a permanent  condition. You can always leave it at home. But sometimes you shouldn't or you shouldn't have to. Something to think about? Isn't it odd how little understanding we have for mothers with babies. Childhood is something we all experience, shouldn't it be something we all understand and relate to?

Friday, December 2, 2011

Not in it to win it

The Gainesville Sun announced their list of the "Spirit of Gainesville" award winners . I was hoping I wouldn't win and I didn't. There's plenty of more accomplished and visible people in this town giving their all to causes they have been involved in for many years. I have only lived in America for seven years. I have been helping the Klausner family for five. I don't even think philanthropy and community work are appropriate fields to have nominees and winners type of contests. In stead of picking who is more or less accomplished I would have focused  on highlighting the actual projects they have been involved with. Not by comparing them or having them compete for a prize, but turning the spotlight to the general improvement of the community, not once, not twice a year, but every day. I would've gladly heard more about the work that all of these people are doing and I'm not even sure how they measure against each other and even why would they. Sadly, the local press feels less local and relevant these days. I'm also not seeking personal glory and recognition and I'm sure every one there felt the same. I just want to help kids with disabilities. But then again I've been doing everything I could think of for months to get this cause some recognition. And I know that people respond to personal stories with unnusual twists more than everyday organic work. Congratulations to all the winners and the nominees. I hope to get to know you and network with you and let's do something good together.

Thursday, December 1, 2011

Disability and aging

Children have enough of a hard time when they realize that people grow older and nothing lasts forever. I grew up with a disability. With every year that passed I got bigger and heavier, while my parents who would carry me up the stairs turned older and weaker. Realizing this was different from finding out that one day, say, your grandparents were not going around forever because this was something I got to see and think about and sense every day. What will happen to me, what is the future going to be like became real, troubling questions for me always lingering in the back of mind. What will happen when I'm too heavy for my parents to deal with? I'm pretty sure not many eight, nine yearolds deal with the aging question quite like that. And for that reason I feared becoming older.

Today I'm 32 and I live in Gainesville, a college town in Florida. Being here makes you feel older because for most people the city is a temporary stop on their way to greater things. In a big metropolis I would be considered young and successful; being surrounded  by 19-year-olds    rendered me old when I turned 25. And I see that my body is changing as well. I've gained weight and often have less energy then when I was in 20's. I feel different and I realize that the benefits of Conductive Education weren't given for life. I should start a daily physical exercise routine to work on myself and get in shape. Cerebral Palsy is not a progressive disorder. But when you move less you feel heavier. When I first arrived in America I had to wheel myself to great distances every day. Now I live downtown where everything is closer and I mostly stay at home. I hear clicking in my joints and back and my tendons are stiffer. And I know, that while CP itself doesn't progress I'm at risk for arthritis and a number of internal organs problems in a couple years. But I keep those thoughts away because I have nothing to benefit from worrying.

 I've lost classmates in lawschool, seemingly healthy people. A young man died devastated  by leukemia, while on a bright sunshiny day a beautiful, smart woman in her first semester jogged into traffic without even knowing it and was fatally hit by a car.  Those stories shook me up greatly but also brought an important less,We never know what the future holds  and  there's no use in agonizing over things we cannot control. A measure of life's value for me is how you impact and help other people. I found my cause with the Klausner foundation and I feel I'm making a difference. I try to live in the moment, whenever possible and I deal with tomorrow when it comes I'm not ashamed of my age because every new year brought on some remarkable experience that changed me. I thought immigration for 4 years. I have two American law degrees I worked very hard to get and I passed the bar. Yes, a lot of it stress, pain and sweat, but it had shaped me. I'm not who I was seven years ago. I want these years, they're my life. And now I'm focused on helping others. My parents often are worried when they hear that I'm single and I live by myself because what will happen to me? But haven't we worried about the future enough? Time to worry about the present.

Wednesday, November 30, 2011

Help us find kids with Cerebral Palsy in Florida!

We really need your help. There's no other way to say it. Please share this on your walls, tweet it and like it on Facebook. We hope to reach as many people in Florida with this message. A message of hope. It's simple really. We run a free program for children with Cerebral Palsy and other disabilities that offers specialized  daily rehabilitation. A lot of kids get can more independent, gain  better control over their bodies and even walk with our help, but first- their parents needs to hear about it. When you have Cerebral Palsy you need to constantly push yourself harder and work on yourself every day to improve. Our greatest fear is that there will be many children that never heard of our Gainesville school, our method or the Foundation that will be wasting away in wheelchairs, having maybe a few hours of one type of therapy or another a week. And- by the same token-our resources will be wasted too.It's not a magic trick, it's not a cure. It's hard,structured work. Routines of exercises that with time and dedication help to achieve progress. And we know there's a lot of children with CP we don't know about. The birthrate is constant, with some statistics showing an increase in developed countries which means new cases are diagnosed every day, possibly in your area. 3 per a thousand live births.

I'm a strong believer in the six degrees of separation. I'm sure that if you help us and some of your friends will do it too, this information will reach somebody who needs it and will use it. We are local, but we have never turned a child in need away if they were able to get here with their families and attend our Academy, even from abroad. Our services are free to Floridians [via McKay scholarships].  Please help us find people we can reach out to in Alachua County.We offer Spring, Fall and Summer semesters. James Klausner is a UF professor who started the school after the loss of his son, Jordan who had Cerebral Palsy. Our method is called Conductive Education, which is a holistic, but very physical approach from Hungary that never quite caught on in America but became incredibly popular and successful almost everywhere else. I have joined his mission because I'm inspired by his story and what he has built.  I was born with Cerebral Palsy, I went to the Hungarian Peto Institute. Today I'm an attorney and I throw my reputation behind James Klausner's cause. I want to help children with CP if I can find them. But a free school needs students to survive and we need people we can help to achieve our goals. We're not asking for money, just a click. CP doesn't affect your intelligence, just your body, movements, speech. It can feel like being trapped in your physicality sometimes. We want to help because the alternative means simply, giving up. If you have any questions, want to tour the Academy, please email me at Rstrzalkowski@JORDANKLAUSNER.ORG . Come see our work. Visit our blog blog.jordanklausner.org 

Monday, November 28, 2011

The bathroom issue.

I get really upset when people who don't need wheelchair accessible cabin, having other bathroom stalls to choose from go for the one with the grab bars on the walls. I once waited 30 minutes to use the restroom by the locked door because somebody decided it would be a nice lounging area. Many people use them as changing rooms. Back in my law school days it became a big problem with students, mostly female dressing up for trial practice in court attire , noticeable enough that the administration put a sign on the door instructing them that this in fact was not a changing area.   Such  restrooms are big and comfortable, but they are like that for a reason. Most wheelchair users cannot easily and safely use regular cabins.  That's why we usually have one that they can on one side . If you have a choice in the matter- and there are usually four, three stalls in a standard size American public restroom, please think that although it's not being used right now, a person in a wheelchair might   charge it to use it in a minute or two. The man from my story had an entire mens room to himself, four empty cabins and yet he had me waiting for the one I could use. Because while he has a choice of any other partition in there I do not. And yes, years of rehabilitation have given me enough of balance and ability to work with my body to use a normal cabin if I had to, but not without embarrassment. This would require me getting on my all fours, getting my pants dirty or touching things you don't want to be touching and kicking my wheelchair out. All so some other guy can have a comfortable experience on his lunch break. But people do other things in them of course. They shave, they make private phonecalls, and routinely homeless people in the past have turned these into showering and sleeping areas.

But restrooms  are not the only disability accommodation abused by fully able people. This is a picture from last night of the ramp access to the Hippodrome Theater. It says do not block, but many do, using the bars  as a bicycle rails. I'm actually surprised that there was only one, usually they're multiple bikes tied to both sides of the ramp. And it's not even the patrons of the theater that do it. Using the area as free parking they most often  hop over to Boca Fiesta hipster restaurant on the other side.
Finally, there's disability parking. If you park there without a proper tag, you get a ticket, end of story. But a private towing company that my apartment complex has hired to ensure that only residents park on the premises routinely uses those spots at night for their trucks. After I voiced my observations that they shouldn't park there regardless, I heard them say: "Are you using it right now? It's 2:30 am". I don't care what time it is. And that's kind of not the point. Anybody would've been ticketed in that spot. And, oh irony, they parked there while they were looking for cars that were there without a permit that they could tow away. I think it's a matter of consideration, kindness and common sense. Those things are for my necessity, not your comfort. And since we're on the topic of restrooms. Please remember that it may take longer for people with some disabilities to use a restroom and knocking and rushing is probably not helpful. Also some conditions may require them them to use a bathroom more urgently and suddenly than most people.

Wednesday, November 23, 2011


Thanksgiving can be a lonely holiday when you're a foreigner in America. The streets are empty, the stores are closed and friends are back home with their families. You're the one who's left behind. The holiday season gets particularly difficult, because November is only the beginning- a prelude to the big one- Christmas. With more time on my hands and very little left to entertain me I can't help but reflect on where I am and how I feel. I'm torn in a way that is hard to explain. With everyone I know celebrating with their relatives and my own family back home in Poland it seems I don't belong. I don't belong here, but I also don't belong there anymore either. And I'm in between stretching over, looking for my own place. In times like that I'm reminded of the great gifts in my life. I was blessed with family, friends and brains. A day is just a day - you can sleep right through it. My parents and brother are always a phone call away. I was able to work around the limitations of my Cerebral Palsy to have an active fulfilling life. I can help other people. It seems I will not be going home this December. A lot of things have been going on, new opportunities popping up randomly. There will be exciting new announcements made by the  Jordan Klausner Foundation in the coming weeks and I'm excited to be part of it. I feel I need to make it work. Because it's not only about me, my goals and my career, but if we stick through it, we can help a lot of people. And also help ourselves and reach our goals in the process as well. I'm very motivated.
A lot of things has happened.   It took me four years. Four years of stress and doubt to convince immigration of what I wanted to do here and why this is important. Advocacy and hope are not really things you can easily understand unless you need it. Unless it happened to you. But, after all the second guessing that had me often thinking what am I doing here still I have a green card. I've also begun practicing as an attorney this year showing the people that said I would never make it. It all easily could've gone the other way. I have a lot to be thankful for. I'd say also for my patience and dare I say, courage. With a store bought sliced turkey and Publix cranberry sauce I reflect on the year but also look into the future. Because what I'm about to do can help other Cerebral Palsy families and it's all worth the hassle.

Thursday, November 17, 2011

Scare tactics

And now for something completely different.  Today I decided to extend my apartment lease for another year, but something about how the property manager went about it left a bad taste in my mouth. The first 18 residents were given the opportunity to renew at a special, discounted rate. The concept was obvious: to have all tentants rushing against the clock to get the offer before it's taken away. It's limited, it's one day only, you gotta get it now before it's taken away! Pitting residents against each other, to be the first one to get it. If you don't, prices will go up. On a Thursday, on a weekday, inviting tenants over for a pizza lunch. Middle of a workday.  Now, I'm sure if this doesn't sell, there will be an all new, better and improved renewal offer of the century. And then those that already signed feel like they got the shorter end of the stick.  Yes, a lease is a product and they want to sell it.

At the core, this set up feels like one of those sale events after Thankgiving where people stand in lines for hours just to get a cheaper toaster, trampling other people to get in.  I'm in a wheelchair, I'm not as fast as others in getting places and I would never elbow anyone metaphorically or otherwise to be the first one at the gate. Also, I think there is something about deciding on a home that makes it essentially different than a shoesale. Talk to your residents, offer them stable and fair conditions. No rushing, no haste decisions. This isn't a lottery. They need to feel safe here, they should feel good here. I would be even  willing to sign a five year lease if I didn't feel like I was played with. I'm really not interested in staking outside of an office to catch a deal of some kind every year, before it's gone. Arlington Square is a premium property within Paradigm Properties portfolio and for that price residents should at least be offered a peace of mind. Not gambling with how much they would pay and where they would live every year.A little more humanity in dealing would be nice. I chose that location for a reason- and it it's not only physical. I was hoping I'd be treated with a little more consideration than if I chose some budget student living. I'm not sure the new property manager understands that.

Wednesday, November 16, 2011

Dear Mayor...

My mother says that this blog becomes repetitive and monotone. It's always prejudice this, discrimination that and a continuous ad for Conductive Education. But it's not because of a lack of fresh material or ideas what to write about.  Life just happens to me. Freshly offensive or insensitive things encounter me frequently. Often it's  something similar to what happened before, so I write about it again. I wanted for it to become a channel for Cerebral Palsy awareness from different angles.  It doesn't happen with just a post or two. Awareness happens when you stay on course. To get the message across you need to harp on the same topic tirelessly, maybe someone will listen. And I'm just as annoyed that certain things happen  again as my mother is reading about them. And I write about what I know- my own experiences. Last weekend I had to send a message to the mayor about something I have written before: wheelchair ramps blocked this time by a city art fair fencing. To the city's credit, his staff was very responsive and followed up as soon as I posted about it on Facebook and Twitter (Yes, I'm friends with the mayor on Facebook as well as some of his people)  and for the second day of the event the fence was moved, freeing up the ramp. I'm happy with that although it never should've happened. Maybe one day I will not have to write about ramps and access anymore and my mother will not be bored?
"Dear Mayor, 
The Art Fest is something we all should be able to enjoy, so couldn't it be set up in a way that doesn't block access to my downtown apartment forcing me to go back and around a block? Don't they have shorter fences that don't use up all the sidewalk? Wheelchair ramps are there for a reason and they are not suitable for setting up tents and fencing. Walking people can walk off of a sidewalk in any spot and can easily get around the obstacles, I can't. http://yfrog.com/nt4ssokjSomething to think about, City of Gainesville crew"

Monday, November 14, 2011

A Conductive World- Can we help?

There are places in the world that are difficult to live in period, even if you don't have a child with disability. It must be so much harder, much more that I can ever imagine if you are in some of those countries and you do. I get e-mails from four corners of the globe practically every day, most asking for the same thing, regardless if it's from Africa, South America, Europe, Asia or the US. Hope. Some kind of cure, some kind of treatment, no matter what it's called, no matter how it works, that has an ounce, a shred of possibility that it may be somehow helpful to their child. Parents are the same everywhere you go. Everybody wants their Cerebral Palsy sons and daughters to get better, to get the best possible care. Their circumstances are of course different, by pure chance it feels some were born in more fortunate parts of the world, having access to better resources. It's heartbreaking for me to open my mailbox every day. Because what can I tell a mother in Ghana or Kenya, India, Iran, Afghanistan, all those places that include very detail description of their situation, of difficult lives of struggle with neglect and poverty? That your lives are hard enough and that I admire you? We operate a small school in the United States, we barely have enough to meet our own needs. We can't fly everyone to America, but we have never turned any child yet, regardless of who they were and what their financial situation was. We will work something out with parents who are able to get to our school, but we don't provide other forms of support. Some e-mails ask for financial backing or help purchasing equipment abroad, we don't do that.

Many e-mails ask for DVDs. While we don't offer any, I always thought that Kata's approach,  how personable she is would translate well to video. She has years of experience of training green volunteers to do exactly what needs to be done to assist her in rehabilitation sessions. Some say, that doing a small bit isn't good enough. I say, when reality kicks in, something has to be better than nothing because we have no other options. For about two years I've thinking about setting up video courses for parents that can't get to us, so that oue Conductor can work with parents throughout the day and easily follow up and monitor progress. Some who can afford it would pay something, most I assume would get it for free. Having this put together however costs money. We have a lot of ideas, but too few resources. If you know of anybody who can support us, donate or give it some media exposure, let us know, we need help.

The other thing I always wanted to do is to be able to issue visas to students in the program. That is the benefit of running a school rather than a therapy center. Educational facilities can get accredited by immigration, a process that is both costly and time consuming. It would be far more difficult to get someone to America if we were running a clinic, when the method that you use would basically have to not be readily available elsewhere. Pretty hard to claim given that the method is Hungarian. The downside is, while you can issue F1 visas when accredited, there is nothing you can offer the parent, who given the child's age should be there. They would be forced to enter on a tourist visa, with all the restrictions or we would have to set up an expensive to launch board school model, which would again require funding of some kind through donors or corporate sponsorships or grants. I get a lot of e-mails from Saudi Arabia, South Africa and the Philippines asking  to send a child away for school.I'm sure there are CE centers closer to some of these places but they must be either too expensive or not visible, otherwise parents would not be googling for a school half way across the world.

  I know I can't solve the global problem of Cerebral Palsy, but I sure would like to try helping some children. I was born with the condition myself and I was fortunate to have the right circumstance, loving parents who had the proper methods available to them. There's no reason I should be special in any way. That's why I  decided to join the foundation to help others, pay it forward and be passionate about something. But we need help and exposure. We need to get started to get started  If you think you can assist us in any way, let  us know: rstrzal@jordanklausner.org

Friday, November 11, 2011

Today is Poland's Independence Day (and American Veteran's Day)

Originally I wanted to end the week by writing about the people from all over the world who have been reaching out to our small organization looking for help for their children with Cerebral Palsy, but this will have to wait till Monday. Today is what happens to be one of the most important, if not the most important Polish national holidays. It signifies the difficult journey towards peace, stability and prosperity. I'm proud to be a Pole, even though I left my country seven years ago. I'm proud of our history and our culture and nothing will ever change that. I don't think you can know where you're going till you know where you have been. I also miss my family very much and often, like so many first generation immigrants I'm torn, feeling I don't really belong here or there. I'm in America because my disability in this country matters less, or should I say, limits me less. It's as simple as that. Cerebral Palsy will always be impacting me in one way or another, but it doesn't need to be that difficult. It took me 25 years to realize that. And as soon as I  was able to do things for myself more, to express myself more, I felt free.

 For me me independence is key. My own, that allows me not to rely on other people for rides, for their kindness to help me up a step or into a bus. It has nothing to do with overblown state level celebration. I chart out my independence everyday and I celebrate with a cup of coffee. For now I'm here, because I want to help other people and I've learnt you need to help yourself first. To feel unstuck. And I have great fears for Poland, because I see how little experience with minorities, how little respect and consideration, the authorities and members of the Parliament have. I just saw an openly gay politician laughed out in the lower house, thinking, wow, we have ways to go, before Poland re-orientates itself to focus on the individual and to allow people reach their own potential. If we're there, other groups to stand a chance. But then, I knew this already. Not much has changed for people in wheelchairs in the last 15 years. I wanted to have a life, I wanted to be useful, I needed to be independent and use my skills and I got tired of waiting. So I left.

I think what hurts Poland right now is its pride. It's how it's caught up in its own historical greatness. Yes, a 1000 years is nothing to sneeze at, but from the outside it makes us look petty. And we have real problems. Real people with real problems and yet all I hear and see is national symbols and statements and mournings and extraordinary sense of self importance. And the cross. The Cross is everywhere. History and religion have taken over the debate. Yet nobody talks about what to do to give people, like me but also different from me, the same kind of empowerment, the same feeling of Independence America gives me. And that's why I'm here.

Wednesday, November 9, 2011

The Gainesville community forum, prejudice is still well

I was honored to take part in the "dismantling prejudice' community forum organized by the City of Gainesville Equal Opportunity Office on Monday. It was apparently their first attempt to include different minorities and types of discrimination and expand the discussion beyond race and color, and for that the organizers deserve praises, but the event itself could've been thought through and put together better. it was ironic that here we were, all focused and talking about equal opportunity, yet I had to be carried up the stage  by strangers, because the lift that was supposed to take me up was shut off with a key. I guess you can say, things didn't start off very well for me. It was a very long night, the event was three hours long. I liked that the panelists were picked from different walks of life, all having a different take on discrimination, because of their race and gender, religion, sexual orientation. The problem was I didn't get to hear much about it. If you get such an interesting and diverse panel you need to find a format that allows everyone to draw from their own experiences and relates to their own lives in Gainesville. We were talking about the poverty division in Gainesville that touches mostly the black community [as it was phrased in the question], the institution of gay marriage generally, the perception of Americans in the Middle East on which as you can guess everybody had an opinion but not all had a personal investment in. What I wanted to hear is what were some of those people's views and experiences with discrimination, rather than review of national and local politics. What is it like to spend a day in your shoes. 

I also think that in stead of questions that every panelist could jump in an answer there should've been broader area topics. The follow up questions should flow from the things said on stage organically, so we could actually comment, challenge, ask and discuss issues as they come up.  More of a conversation, less of a statement making opportunity. There also needs to be a way to integrate the audience into the process better. Some people where genuinely upset that they didn't get to say their peace and leave. Few got upset, because they were hoping for a town hall  meeting type of a scenario, where they could just bring up their own problems, often having very little to do with what is going on on stage.
Media were present, with TV cameras rolling and Gainesville Sun's Chad Smith vigorously typing. The attendance was low, but it's what you can expect from a 6-9 pm event on a weekday set up in a middle school. Perhaps doing it in the plaza auditorium downtown  and having the UF Student Affairs office involved to bring out students as they live here too, would draw a bigger crowd. You could see by what the panelists have prepared, notes, poems, stories, that they were expecting a different type of set up. But what I wanted to hear is if they thought Gainesville is a "mean city", because some polls indicate that it climbs up in there- in relation to their fields, how they relate to the transient student community that felt left out of the conversation and for the moderators to offer some kind of conclusion and pull some of the things said together

Sunday, November 6, 2011

The Kata Szvoboda interview: with introduction

A couple of months ago I've submitted an interview with our Hungarian born and trained Conductor, Kata. to Andrew Sutton's Conductive Post I was hesitant about posting it on our own, because she didn't like the transcription and she had a couple of valid criticisms. The text was much shorter than out two hour conversation and some of the issues seemed to have been taken out of the context of the conversation, shortened, removing some of the original or intended meaning. The chat had a better and more organic flow. I wish our journalist friend was able to do a better job reflecting Kata's passion, her history, her understanding of Cerebral Palsy that goes well beyond her Peto  training, her love and compassion for the children, both as a professional and a mother. She is also a skilled experimentator who has great understanding of other approaches and methods and always looking for ways to make them work together. I have noticed that many Conductors are really not that willing to think outside of the box and try different things. In her years of experience having to adapt to different circumstances, parent mentality in a different country she was able to figure out what works for her here and now and what doesn't. What is also not that common, she is not dismissive of other methods and approaches, because who know what can be beneficial to a child. Apparently Kata was not offered to review the text before I was told to sent it out and that again is unfortunate. She was concerned about how her English grammar came across in the spoken interview and with that I see the writers point. It is a growing trend in American press to try to reflect speech patterns, accents and mispronunciations of foreigners. Also, there is also a risk that your subject would try to rewrite the interview entirely. Many conductors got up in arms about her use of the word "therapy" when mentioning the Peto method. I understand that as not an attempt to literally brand CE as a "therapy", but colloquially meaning an approach  or method of dealing with disability or condition of any kind. This would include things that not only help the condition lessen but also decreases the impact of it on a persons life. Nobody's claiming I believe that CP can be healed like a broken foot. And yes, in a country where caring for individuals with disability has a lot of bureaucracy and money tied into it, where Peto is very little known and trusted, vocabulary is not of primary concern. Using words that people may recognize, not accurate but at least in the ballpark of something that instinctively you can identify as having the potential of helping at least create a possibility that a parent will identify it as something they need to look into.
First and foremost, Kata's story is very interesting. How she ended up in Gainesville, small town USA from Hungary and came to love it. We are not a big metropoly, yet, years later, she's still here, helping the locals when she could've been in a head conductor in a big city. Her loyalty and involvement with the Klausner family through Jordan's untimely deeath is extraordinary. People don't understand, that JKF is not a big institution, we operate a small community school in a building we rent, yet our sense  of mission is great. We have never turned a child away yet.

Meet Kata Szvoboda, a conductor at a small American non-profit. She admits that with her years of experience she is a sought-after specialist getting offers from centers all over the country to become a senior conductor but she likes the community, the school and Gainesville – her Florida home.
Kata attended the Pető Institute in Hungary. After coming to America following her graduation for a short time, she worked in Hungary for three or four years. She has lived in Gainesville, Fla. for 15 years and now works at the Gainesville Conductive Education Academy operated by the Jordan Klausner Foundation that she helped to start to offer free Conductive Wducation to Floridians.
She sits down with R. Strzalkowski, Jordan Klausner Foundation Associate Director, who was born with cerebral palsy and moved to America from Poland to become an attorney and credits his functionality to years spent in the Pető Insitute.
Why do you think people prefer Hungarian conductors in America?
I don’t know why people want Hungarian conductors, but we are there with the kids – if we need to be on the floor and crawl for six or seven hours with the kids, we do it.  Maybe it’s the culture, but I think Hungarian people who choose this career, it’s because we want to and it’s coming from the bottom of our hearts.  Maybe because we learned the example over there, we are more strict with the kids. People watching from the outside might think, ‘What kind of therapist is so strict? but that’s how they learn. It’s the best way for them to learn, you have to push them.
Do you think parents feel guilty?
I cannot imagine having a special needs child. I think it’s a heart-breaker, you have to give up your whole life. But I say, you know what, 80 per cent of children have cerebral palsy because of the birth and it’s not the parent’s fault.
Do you think there’s an attitude for parents to want to take it easy on the kids?
Yes, the parents think the kids cry because it’s painful, but I tell them, ‘Believe me, it’s not.’  I have to tell them to please trust me, they’re going to stop crying and start to enjoy being able to do movements, but they have to realize they are able to move and do something. If the parents are just holding the kids, they won’t move.
What differences do you see between Hungary and the US?
I see differences in the parents. Maybe it’s also the health companies just trying to give more equipment to the kids to make their lives easier. Maybe it’s financial in Hungary, that they don’t have the money for a wheelchair. There, they first try to just use the kid.
When people ask you what you do here, do they know what it is?
I used to say ‘I’m a conductor’ but, because a conductor is on a train or a band, I have to explain it. If they are not really interested, I just say that I am a therapist. Otherwise, I have to explain that I come form Hungary and do a special therapy I learned over there to help special needs kids to be more dependent. We work on fine motor skills for people of all ages.
Here, I need to explain it 90 per cent of the time. The parents don’t care what the therapy is called, if it’s walking, that’s the main goal.
Do you have any stories from working here to share?
I have lots, thank God, just positive and success stories.
I have a boy who is really in my heart. His name is Elijah. In 2005, he was here in the summer camp we started in Gainesville and he has cerebral palsy. He has athetoid, which is over-movements. At that time, he was walking in a walker, but he was walking kind of like a crazy person. He couldn’t stop – if he walked, someone had to chase after him to stop him. He is so self-confident and he wants to walk. He is smart and he wants to do more, he is interested in doing anything. After the eight-week summer camp, he was able to do 68 steps by himself without the walker. He was about seven years old at the time. It was a big push to the grandmother, who is now pushing and forcing Elijah. It’s not enough if I push the kid, someone has to push at home.
Now he is becoming independent – he can go to the bathroom and feed himself.
What is the best age to start CE?
Newborn – right after birth. The youngest client I had in Hungary was three weeks old. In America, the youngest was 1 ½ years old.
Why don’t they start when they’re younger in America?
Probably because the parents have to pay a lot and in Hungary it’s kind of insurance-covered. Plus, the parents don’t know and sometimes won’t have a diagnosis from a doctor until two or three years old.
It makes a huge difference if they don’t start until they’re older. At that point, they’re already more damaged than they were before, and I’m not a talking about the brain capability.
Definitely the younger, the better, there’s no question. Trying to make a kid walk who has sat in a wheelchair is very hard.
Do you think there is enough information about C.E. in America?
No, definitely not. I don’t think the doctors know about Conductive Education, and even if they know, they are afraid to tell the parents. In Hungary, we have more and better relationships with the doctors because we don’t see each other as competition – we try to work together. It depends on the people, but it seems here in America, it doesn’t really work yet.
Maybe it’s because in America they start the therapy later, so the parents don’t see the success as much. Here, you can only do a little piece, and sometimes it’s not enough for the parents or the doctors – they want the big change, they want the miracle.
Have you thought about how to change that?
I’m working on it and this summer I have a two-year-old and a three-year-old, so I’m very excited.
How have you changed your practice here in America?
I tried to do a plinth program I learned in Hungary here, but with 15- and 16-year-olds that are over 100 pounds, you have to adjust what you do. The idea is to make them more secure and relaxed.
Could you talk about what you’re adding to the summer camp?
We’re having volunteers to do extra art and music, which is something we do all the time in Hungary. In the summer time, we make it a little bit more fun and in the afternoon, we will have music and art or a movie afternoon.
What about how the students stayed over night in Hungary, do you prefer it to be a 24h experience?
That’s the way to have the most effect, but when they go home here, the parents do the job instead of the kids.
Do you feel that kids show more resistance, as they grow older?
Maybe it’s just that they are not able to do more, that’s why it’s best to start with newborns.  But I always say that you can make progress no matter what, no matter how old they are.
What do you think about other forms of therapy?
We do swimming and aqua therapy during the year and it’s great, the kids are relaxed and love it. I also have some students who do horse therapy and suit therapy. I tell the parents to try whatever they want, you never know what will work. The more you try, the better it is for the kid. Everything gives a little something. I think that it’s better if we have a team.
Do you know other conductors in the America?
Yes, all over America, and I would say we all have the same experience. We all try to do the same thing as we do in Hungary but, after a couple years, we all realize we can’t do the same thing. If we do 100 per cent in Hungary, we maybe do 50 percent here, and it’s not that we don’t try, it just doesn’t connect here.
In my dream world, we would have a mommy-baby group and I would separate the kids by diagnosis.
How did you end up in Gainesville?
I was in my third year at the Pető Institute when I met a colleague who was here for a summer working with Jordan Klausner, and she told me about the opportunity to work here privately for the family. Then we got the idea to start the school, and a few years later, here I am.
The parents who are looking for us still have a hard time finding information about Conductive Education, so we need to have more information available on the Internet. We have some students come in from out of state. We had about ten kids this summer.
Volunteers are a big help and some just have a sense of what to do.
I have volunteers who keep coming back for years now because they just love the kids. I’ve had more good experiences than bad.
What keeps you going every day?
I just love it. Of course I want to have my dreams come true, but I always want to be a conductor and always doing my best.
During the year, unfortunately we don’t have as many kids. But I’m really hoping we can have little ones that grow up with us.
Why do people stop coming?
The ones that are not here and in the public school system and they are doing well. They may come back in the summers because they want to. Elijah cannot wait to come, and every morning he has a big smile and is full of happiness.
What is your hope for the parents in America?
I hope they get information about the therapy as soon as they find out there’s something wrong with the kids and I hope they get some financial support from the government, like insurance.
I don’t understand why the physical and occupational therapists are covered by insurance and why some other therapy without an American license is not. The parents of children with cerebral palsy are often not able to work, so it’s like a circle, they can’t pay for special therapy.
Public school is free but the kids are sitting in a wheelchair all day long and they can’t do much.
When the kids are older and they don’t get the miracle, the parents give up a lot.
If you do the therapy here but stop it at home, we have to start all over. I tell the parents to engage the kids. You have to be motivated, then the kids feel motivated.

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