Wednesday, June 29, 2011

The human factor:It starts with the Conductor

I've had a number of surgeries before arriving in Budapest. A Hospital can be pretty traumatizing for a six-seven year old and some nightmares haunt me 'till this day. Back in the 1980's, at least in Central Europe surgically correcting the hips and then cutting bellow the knee and the Achilles heel was a pretty standard procedure in Cerebral Palsy children, all requiring many weeks in a cast every time. Times were different back then and parents had only limited opportunity to visit, the settings were scary and sterile, and the nights- quiet and lonely. Before my surgeries, to spare me the trauma my mother would lie to me about why and for how long I would be there and that was the reason why I didn't trust her when she told me that Budapest would be a completely different experience. And it was. For once I felt safe, the exercises were engaging and fun and predictable. I found comfort in this predictability- you knew what was going to happen that day, nobody was being taken away for surgery, nobody had to fast, nobody was in pain. Just exercising, singing, and fun. Nobody wanted to cut me open, in fact there was no operating room at all! You perform so much better if you don't have to live in fear of what's happening next. You can relax. And your only goal is to get better.

We all developed personal relationships with conductors, part therapists, part teachers, motivators, educators and organizers. They would even make our sandwiches and serve our meals on the floor. That was the amazing thing about conductors- we used to call them "aunts" in Hungarian because in reality they were everything and anything in between. They even moved the heavy plinths around the room making them stowing them away to get ready for the next session. I remember how some of them gave me gifts, how some tried to kiss me because I was adorable as a child. We cared about these women and they cared for and about us  (I say women because men were only working in the sick wards). I remember how we all cried when conductor named Marika came to say her final goodbyes at night. She returned after her shift as we were sleeping, just to be with us a little longer. It was an experience and a memory for all of us. Even if you don't trust the Peto method and you don't know what it is, consider the role of the Conductor. They have years of training in both education in therapy. They know how to deal with children and they are Cerebral Palsy experts. They often modify routines and exercises because they know what works and what doesn't and they learn to adapt. Back home, rehabilitation wards popped up around the country, but they were in hospitals- they had white walls and hospital beds and although just like in Hungary we called the women "aunts" they were nurses.

We are lucky to have a  Hungarian conductor at our Academy. Her years of experience with Cerebral Palsy children would make her a senior conductor by now. She is an asset an every year she gets offers from other centers in America, but she feels attached to the Klausners and our Florida community. She wants to help local children, although she could easily make more money and be in a bigger facility elsewhere. What a person needs to be a Conductor doesn't always come from a classroom. You have to be a certain type of person. Loving, caring, engaging and loyal. Understanding and motivating. Human. Motherly. The human factor is what I think people overlook the most when they define or throw around terms relating to conductive education. Is it this? Is it that? Perhaps we can all agree it starts at the basic human level. With a Conductor.

Monday, June 27, 2011

Whatever works, works.

My parents would try anything that would make me better. I don't think there's a method or approach that over the years we haven' tried. When I wasn't in Budapest my parents had me go to the swimming pool twice a week, a thing that I hated and was most afraid of. I would go horseback ridding on Mondays and the warmth of the animal combined with the exercises and the smell of the forest relaxed me and made me flexible. I had a modified bike with two large wheels instead of one in the back. My mom became certified in the Doman method that was the rumoured miracle back then. We did the Bobbath, warmth therapy, massages, bioenergy therapists, healers, herbal baths that stained our tub, Japanese massage, low voltage electricity, brain scans even. Our approach has always been include as much as you can. We always had a grab bar and wall bars in the hall and an exercise mattress in the living room. My dad never wanted me to lay idly even as I watch TV I had to kick or push something,  I would stand or walk in my Hungarian braces in a lot of the spare time. My parents  always believed that any kind of therapy required a lifetime of commitment.

 I can only testify to what happened to be and what I benefited from. I'm not here to just blindly advocate for Peto, bu it did make me progress the furhest and the fastest- I ended up walking in braces and with sticks. It feels to me that many people get so caught up in the theory and theory of their little field that they lose all perspective. To me it's never about "mine is better than yours" and I feel like everything that makes a child active, move, do things on its own can only help. This isn't about egos, it's about helping cerebral palsy children. There's this odd sense that different methods compete or exclude each other. I would never tell a parent to give up on something they've been supplementing CE with. Yes, Peto as a method might be more tailored to address neuromuscular disabilities, but we are all individuals and variety is always good. And I'm happy our Conductor shares my sentiments. In an upcoming interview for Andrew Sutton's Conductive World Kata vows she would gladly dig a swiming pool under our Academy. Because if it works, who cares what is and what it's called? Try anything, try everything and do as much as you can.

Friday, June 24, 2011

Cerebral palsy costs over $900000 per person in the US

There's an interesting number contained in a not so recent publication by  Centers for Disease Control and Prevention  (A US public health agency) - "Economic costs associated with mental retardation, cerebral palsy, hearing loss, and vision impairment—United States, 2003" that puts Conductive Education in a different light. The report estimates the cost of people in America at 921,000 dollars per person. This includes not only the costs of treatment and assisted living but also things like potentially speculative things like lost income. There is always a question as to how those numbers come about and what they actually mean, but as an attorney I came to accept that we put numbers on things like death of a loved one, loss of a limb, enjoyment of life and those are pretty standard in tort law. This is not what I wanted to focus on. If Cerebral Palsy comes with such great social cost, maybe something should be done to limit its long lasting effects. Let's take a second look at Conductive Education and its potential ability to turn cerebral palsy kids into functional, independent successful people. The more a person is able to do for herself, the less of a social burden she becomes.

The division between the left and the right in the United States has also been about fiscal responsibility and spending. We are also still in a global crisis and the funds are tight. When you think about it, Conductive Education is something that both Republicans and Democrats should stand behind. It addresses both of their goals: It assists with an important social issue, it empowers the individual and it's cheaper in the log run. And it's not a virtual problem. Florida Governor Rick Scott suspended a lot of services for people with disabilities just a few weeks ago. And I agree that the situation is difficult and the budget needs to be balanced. Conductive Education centers that run as schools like ours are cost effective because we never ask for any disability  therapy based money and our services are free. We do get funded by our student's educational McKay scholarships.

I understand the Governor's motives going in, and quite frankly we want to spare those kids the lifetime of group homes and nursing homes funding for which he suspended in the first place. The earlier it starts the better the potential benefits. A stitch in time saves hundreds of thousands... per person. Think about it. If 2-4 live births per 1000 have CP and the cost of one is 921,000 then the total comes up to a pretty high bill for the State. We can take the cost down. And think of the added benefit of having involved, functional citizens that lead productive lives. Granted, not everyone is equally functional at the end and there are many things to consider but every new skill improves the quality of life. The funny thing- Centers like ours don't require a lot  other than an ability to reach parents with information and perhaps some funds so we can expand and take in more children. I would really love for Florida politicians left and right to come see why this works. Gov. Scott, Senator Nelson and the Republican challenger George LeMieux come to Gainesville. And just a reminder: I would not be an attorney today has it not been for this therapy.

Tuesday, June 21, 2011

A blast from the past: This is me- then

As a new group of kids arrives at the Jordan Klausner Foundation's Academy today, I thought I'd share my own pictures from 20 something years ago taken in Budapest. The four years spent in the Peto Institute were literally life altering and not in a way Peto himself imagined. I was not the first one of the Polish group to arrive there, I wasn't there the longest. My friend Tomasz stayed there permanently with his family and became a Hungarian poet. Mateusz, I believe was the first one because his mother was a medical doctor that dealt with CP kids as her field. I got to speak a foreign language and live in a foreign country at the age of 7 that lifted me from the greyness that was Warsaw in the 80's to a reality that ad color, fully supplied stores, yogurts and juices. While my peers back home went to school and never got to travel, going back and forth between the two lives gave me a pretty unorthodox childhood.  Mom and dad would pick me up on the weekends for 2.5 days of fun: reading, discovering Budapest, tanning, swimming. I remember going to Margaret's Island, watching Esti mese, and books I'd swallow whole. We had very few pictures from the Institute itself because parents would never be on the floor with us but my dad is a very pushy photographer. Can anybody identify the conductor? Also note that while MSI made us change into their clothing [thankfully no pajamas] this is one of the few instances I had my own on instead of the shirt andshorts that made it painful to slide up and down the plinth in.

Saturday, June 18, 2011

Press release: Jordan Klausner Foundation kicks off camp for kids with cerebral palsy; offers baby camp

Gainesville, FL, June 17, 2011 --( The Jordan Klausner Foundation, a nonprofit organization for children with disabilities, starts another summer of education and therapy services Monday and launches a new class for infants and their parents.

The camp runs from 8:30 a.m. to 2:30 p.m. every weekday from June 20 to July 29 and is located at 4315 N.W. 23rd Avenue. An additional six hours of instruction to parents and babies may be scheduled individually.

During the year, the foundation operates the Gainesville Conductive Education Academy, a Florida charter school that combines rehabilitation and education to help children become more functional and independent.

“The parents don’t care what the therapy is called,” said Katalin Szvoboda, the academy’s teacher and therapist. “If it’s working, that’s the main goal.”

The facility applies the therapy method developed in Hungary in the 1940s by Andras Peto. Over the decades, Peto's Institute in Budapest has become a popular destination for Cerebral Palsy parents from all around the world, with many witnessing great progress in their children's walking, talking and other functionality skills.

Szvoboda, who is known as the academy’s "conductor," was born, raised and trained in Hungary, and has been involved with the school since the first summer camp was held in 2005. The Academy’s approach combines K-12 education with therapy, with full-time instruction offered during fall and spring semesters. During the summer, the schooling is substituted with fun activities, games, arts, crafts and more exercises.

Summer is the busiest time of the year for the Academy, with some children arriving from out of state. Parents of children with disabilities often do not have the resources or time to provide adequate therapy during the school year and the summer camp provides an opportunity to introduce families to the benefits of Conductive Education so they may consider fall enrollment.

The key to Conductive Education is having the children follow the carefully designed scripts of exercises to make them to stand, move and walk with the use of specially designed furniture that also serve as rehabilitation tools. The goal is to make the children as independent and as functional as they can be, as foundation’s motto states: “Helping special children help themselves.”

Although the technique may used in children with any neuromuscular disability, Conductive Education is believed to be particularly effective in Cerebral Palsy cases and Gainesville has one of only two centers in Florida able to offer Conductive Education free to qualifying resident parents through the McKay scholarships. There are still open spots for interested families.

While many students do not enter the academy until they are of elementary school age and may qualify for the McKay scholarship, Szvoboda says the best age for beginning the Conductive Education therapy is right after birth.

“If the doctor sees something wrong or there was an oxygen lock, then see the therapist as soon as possible,” Szvoboda said.

With the six additional hours per week of individual instruction for parents and cerebral palsied infants, Szvoboda will be able to start working with the child early as well as educate parents about how to help their child’s development.

“The parents want the big change, they want the miracle, but they have to start as early as they can,” Szvoboda said.

Cerebral Palsy is an umbrella term for a number of neuro-motor disorders involving brain injury at birth or during pregnancy. An estimated two-to-three live births per thousand are diagnosed with the condition, with some studies suggesting raised rates in recent years. It affects children in all countries and all social groups. The condition mostly affects walking, control over limbs, balance and speech and in most cases, renders the body spastic.

The Jordan Klausner Foundation was founded in 1999 by University of Florida professor James Klausner in memory of his son who had cerebral palsy. The foundation is a 501c3 nonprofit run primarily by volunteers to offer a range of services to the disabled community in North Central Florida, including educational opportunities for children, advocacy and legal services. It was founded by parents and relies on grants, donations and McKay scholarships for funding. The Gainesville Conductive Education Academy school opened in 2006.

For more information or to tour the facility, please email or follow us on Twitter:jklausnerfound

Thursday, June 16, 2011

Our Florida CE Summer Camp starts Monday offering hope for many kids

Monday marks the beginning of the most busy time of the year for us. We start our annual Conductive Education Summer Camp in Gainesville, with many kids coming from out of state to experience this. I know the trend is different in Europe, with many centers slowing things down a bit as they go into their summer break. And I'm sure what we do will fuel a lot of criticism from Conductive Education bloggers. Programs like this require  commitment and it takes a lot of continuous hard work to see results. I share that sentiment. My father always pushed me to stay active and do more all the time; To exercise or move a limb even as I watch TV, to never be idle. And having a summer program gives an illusion of a quick fix, that you can make up for a years worth of not doing anything just by doing a six weeks program. But I also know some rehabilitation is better than none. Many American parents can't afford Conductive Education and it's not just the price of the course alone - as ours is offered at no cost, but there's transportation, the time commitment. Yes, this is very sad, but it's a reality. A lot of parents don't  know about Conductive Education, don't trust it, many will not alter their therapy choices or change things during a busy school year. They can explore other options during summer when a lot less is going on. I like to think of Summer Camps as a preview. We do hope to have children commit to our full year program, especially since we offer it at no cost to qualifying Floridians via the McKay scholarship. Only one other center in Florida does that. And we know there are many more kids with CP because the birthrate is constant, we just don't have the resources to find them. And we know this works.  CE is an effective tool to make kids functional. I read a study lately that estimates the combined cost pf Cerebral Palsy at $900 000 a person. I will discuss it more next week, but you can't help but wonder, given those numbers, why don't the law makers from left or right stand behind programs like this.  We hope to have more kids join in permanently, but even if it's just a one off, it's still a benefit. Please share our contact details with anybody who knows anybody who could benefit from CE as we still have spots.

Tuesday, June 14, 2011

Community and Music for Conductive Education

DeeZeePete will play at the June 24th fundraiser for our CE Academy and the foundation to support children with disabilities on their quest to be more functional. Please pass this along to any Gainesville bands interested in doing something for charity, spreading the word and reaching more kids. We are a small town charity and a small town program. We don't get the exposure or the big money national foundations have. But the Gators have always been very supportive and one thing I have to say for Gainesville is that the community has always been vibrant and we have considered ourselves part of it. The University-town nature of our city complicates things a little bit. There's a lot of young people want to get involved in meaningful causes. On the other hand, the Gator-crowd and the Gainesville locals seem to two be different worlds. It's not difficult to understand, Gainesville is a transient town. Students have their own goals, their own passions and they will not be here too long, why should they get too excited to help parents that are from here? I was recently asked to  help start a local cultural foundation for young musicans and I have no doubt UF students will stand behind it because they understand it more. Also, the nature of our cause doesn't help. Conductive Education isn't something that everybody understands  without a long explanation and the name is not very intuitive. It's a bridge difficult to cross, but when we do, magic happens. We have an energetic UF student group called "Gators for Conductive Education". Local musicians, once they understand how we help cerebral palsy children help us put on concerts, artists and designers support us with their craft. Just recently, UF alum and exibit artist David Tarafa designed a wonderful  poster to promote our Summer Camp. And we are very grateful. We are part of this community and whenever it hurts, we hurt. That's why we are so concerned for the future of this city. Many businesses have closed with rumours of many more following. We saw Ben and Jerrys, Hooters, Mellow Mushroom, American Apparel, Ti Amo closed down for good. Bars and pubs in this town are not only places where the Gators get intoxicated, but also cultural hubs where bands, comedians and painters have shows and practice their crafts. Common Grounds is closing in June after 8 years, Fyre/Shooting Star, Rum Runners/Fat Tuesday had closed down and Brophy's Irish Pub, 706 and Midnight are reportedly up for sale. The youth, the music, the art are the life of this town.  Gainesville gave the world such acts as Tom Petty and Sister Hazel, it's where Grooveshark is headquartered. We depend on local residents and businesses and can't help wondering how this crisis will affect us all. But for now, join us, help us, support us.

Friday, June 10, 2011

Money, money, money

I get strange reactions from people when I tell them of my involvement with the Jordan Klausner Foundation. Many see non profits as institutions that are after their wallets and then blow most of their funds on salaries, investments and office costs. The problem with that perception is that most of us actually volunteer our time and resources to do something good for the Gainesville community. Not having the money is the problem. If we had some to spend we could reach more children and parents with the message of hope that is Conductive Education. In fact, by not having a big budget we are hurting the cause. Think of the disability awareness we could raise, the children we could help, the programs we could launch. From that perspective, every day that passes is a day wasted. Because I want to help people. I just don't have the resources to. Everything costs money. Electricity- money, rent- money, our Conductors- money. And that money has to come from somewhere.

 Conductive Education is not free in America, we can't get it to be covered by insurance. We were able to form as an institution that accepts McKay scholarships [scholarships that the State of Florida grants to children with disabilities for education] but, because awareness of what CE is and what it does is very low, we simply don't have enough children. I wish we could go out there to reach more kids, but creating a social campaign of such magnitude requires, you guessed it money. I live in the country where explaining what Conductive Education feels a bit like talking about witchcraft. It's funny how it's considered a less established or known in America compared to other methods  although it has a track record of over 60 years. There are countless success stories, we have success stories in Gainesville! Children improve before our eyes. I envy non-profits that have big budgets and offices because to achieve anything you need people and resources and space. Grantwriters and educators and PR personnel. All those things are essential for coordinated action because with non-profits doing the best you can is simply not good enough in the land of wasted opportunity. I wish the media and politicians would rally behind us.

 "The Gainesville Sun" called our school "A miracle class" once. Well, we need help making those miracles happen. I wish that Mayor of Gainesville recognized that as one of only two centers in Florida able to offer CE at no cost our school is an asset to the city. I wish Gov Scott saw the social costs of having a disabled population. Our method is designed to help kids avoid disability programs, group care homes that he's been trying to limit spending for.  That's the way to do it- making people independent and functional. There's a lot to do and we need help. And I fear that between the lack of information and the lack of resources opportunities for children are wasted again. Between the American medical personnel's lack of enthusiasm and the competing methods we were never at war with. I do what I can, as I am a success story. But I fear that one day I too will give this up not because of my ambition butt because I pay rent too.