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!

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. 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:

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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Wednesday, November 2, 2011

"If your child was born with Cerebral Palsy..."

I've got a phone call yesterday from a number I didn't recognize. A recording was encouraging me to stay on the line if my child was born with Cerebral Palsy because I may have a right to compensation. It was a law firm or a legal referral service seeking out potential clients. Of course I don't have a child with Cerebral Palsy or any other "birth defect" as the message stated. I have Cerebral Palsy. And I am an attorney. The nature of this solicitation and how it shouldn't have been aimed at me are not really that important. But advertisements like that  pose a number of interesting questions. Money will not cure Cerebral Palsy. Yes, it can buy a better standard of living, adaptive equipment or even placement in a sought after hospital or treatment facility if  parents choose to do something active with their child, but too few do. What kind of information is given to mothers facing this life altering scenario? What do attorneys know about Cerebral Palsy, children needs and different approaches to therapy, treatment and education? What happens beside the big payoff? My concern is that all of this is set up to a lifetime in a wheelchair in a comfortable non challenging environment. I get a lot of e-mails from parents all over the world, concerned that they're doing occupational therapy 2-3 times a week for an hour, it doesn't seem to be working and the child is growing heavier. The question is always "What to do". The answer is: Educate yourself.

 I'm not the one to attack physio or occupational therapy like many Conductive Education purists. God knows, my parents have tried just about anything, before and in combination with CE. And I believe that anything can be of benefit if it's consistent, physical and continuous. But Cerebral Palsy requires working on your body all day every day, it's not something you can touch upon for a few hours a week. And it's not something that will go away only because a big pile of money is thrown at you. I  would really like to stop seeing it  framed as a financial problem only. My experience is people come to lawyers looking for guidance, direction, legal and non legal alike. Because where your case ends, a lifetime commitment begins. The paths you choose will affect their choices.  Here's a question to my fellow attorneys: What do you know about Cerebral Palsy? Who do you put them in touch with? How do you provide encouragement? What options are you aware of?