The stress, the fear and my body

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

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

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

I can only inspire myself

My parents started a small revolution back home when I was a child. They decided not to put me in a special  school,  an obvious place for disabled children in then communist Poland. They wanted to spare me the experience of an institution where kids with physical and mental conditions alike go together in an environment that felt more like a holding place than a place to study, where instead of being motivated, pupils are patted on the head. My parents wanted me to be the best that I could, to be as functional, the most normal- so, at the cost of straining their backs carrying me up the stairs for years and with a lot of informal agreements with teachers they put me in a regular school. Many of the other children with cerebral palsy in Warsaw soon followed our example. We were breaking ground, there was nobody we could really look up to. We had to rely on our own goals, dreams an ambitions as no people with cerebral palsy, with any physical disability really, were present in the public space anywhere to be seen.  All we saw was the most disability unfriendly reality- with stairs and steps and no lifts everywhere and we kept pushing. It would put my parents mind at ease had they known how I would turn out buck then. If they had a role model, anyone to talk to that done this before. But there wasn't anyone and raising a child with a disability has to be a lonely and scary experience. On  the other hand, I think it helped them push me further not knowing what to expect. When we started the Peto rehabilitation my dad was stricter than the conductors. In his mind I would be walking, no question. My parents always seemed to think that there's no limits to what Conductive Education can do for me, that I'm limitless. Maybe had they known what's reasonable to expect they would have given up along the way like many parents did.

I see a lot of Americans with disabilities, with Cerebral Palsy among others writing books, becoming motivational speakers or give interviews. Not that their stories aren't powerful, but I can't really wrap my mind around this concept of inspiration. There's nothing unusual about me. I think it's a basic human reaction to do the best you can in a less then perfect situation. I didn't choose my disability. But it's natural to fight, to push, to achieve things in spite of it.  I'm first and foremost an attorney. If people want to listen, I will talk, but I will never fully understand what they get from it. Because nobody inspired me. I draw my strength from my own dreams and ambition, from my parents and their work ethic, from my friends. I am my own biggest critic and I push myself hard.

North Florida School Days article about our Gainesville school

The Gainesville Conductive Education Academy (GCEA), a local school that incorporates specialized rehabilitation into its everyday schedule in an effort to make children with Cerebral Palsy and other neuromuscular disabilities functional and independent, begins another semester this August. The GCEA 's goal is to motivate the students to work harder and reach for the sky through daily exercise and learning routines. Regular classroom instruction is available at the K-12 levels, and is available at no cost to qualifying Florida residents. A new pre-K toddler class is being offered in the afternoons. Both parent and child work together to learn the principles of Conductive Education. The school is open year round with classes offered during the fall, spring, and summer.

The facility applies the Conductive Education 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. The “Conductive Education” approach has been adopted worldwide. You don't have to travel to Europe to find success stories, as the Gainesville Academy has had a fair share of its own. Katalin Szvoboda, the school's head teacher/therapist says she sees kids progressing every semester, including at the annual summer program that just concluded. One of her favorite stories is of Elijah, a boy with athetoid Cerebral Palsy. Elijah could not control his movements or stop when he was walking with a walker when he first arrived at the GCEA. After his first semester he was able to take 68 steps without a walker. Now he walks without a walker and returns every summer.

Szvoboda, who is known as the academy’s "Conductor," was born, raised and trained in Hungary, and has been involved with the GCEA since it first introduced Conductive Education to Gainesville in 2005. The school is operated by the Jordan Klausner Foundation.

R. Strzalkowski, who serves as the Foundation's Associate Director and is a Florida attorney, was born with quadriplegic Cerebral Palsy and moved to America seven years ago from Poland. As a child he received years of Conductive Education therapy at the Peto Institute in Budapest, and he is now highly functional and serves as a conduit to encourage the GCEA students. Strzalkowski reminds students, “The Peto method is hard work. Pushing yourself, being pushed by others. But you do improve. You work hard, you get better and you feel like you earned it, because those moments of exhaustion and triumph are so worth it when your parents see you walking down the hall.”

The key to success in 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 serve as rehabilitation tools. The goal is to educate children to be as independent and as functional as they can be; as school’s motto states, “Helping Special Children Help Themselves.” 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 501(c)(3) nonprofit organization 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 opened in 2006. It is located at 4315 N.W. 23rd Avenue on St Michaels Episcopal Church campus.

Now accepting children with Cerebral Palsy for fall semester at the Gainesville Conductive Education Academy

The Gainesville Conductive Education Academy operated by the Jordan Klausner Foundation is a Florida charter school that combines rehabilitation and education for children with neuromuscular disabilities such as Cerebral Palsy. We are one of only two centers in the region able to offer our services free for qualifying residents and we are now accepting applications for the fall semester. The Peto method that inspires our approach has gained worldwide popularity in the late 1980's and has made countless children more functional and independent improving their mobility and communication skills. We think it's the combination of carefully designed exercise routines that children perform themselves rather than having things done to them, the loving and demanding approach of the Conductor that pushes the children to try harder and reach further, the motivating atmosphere, the furniture that doubles as exercise tools and the way parents are encouraged to apply the same principles at home all result in many success stories  we have also seen in Gainesville. Our conductor, Kata is Hungarian and was trained in Budapest. We know that many Florida kids get little to no rehabilitation or treatment of any kind, especially if it collides with school activities and parents' schedules, for that reason we offer schooling and rehabilitation in one place, together, part of a holistic approach. We also know that many Floridians have not heard of our school or the Peto method and ways it could benefit them.  Please help us spread the word, there are many more children we can help. For appointments email: rstrzal@jordanklausner.org

Manifesto: My dream for the Jordan Klausner Foundation

I've remained with The Jordan Klausner Foundation because I've always viewed it as a frame for the ultimate goal: doing good. It seems like it has the correct elements, a good concept and everyone's hearts are in good place. We are, it seems all on one page as to what we want to do and how we want to do it. Yes, the organization has been around for about twelve years and yes, it hasn't been very visible. As always, there are good reasons for it. The staff mostly volunteers their time and arguably, without being a lean professional machine chances are lost and opportunities are wasted. I also think that something happened between now and the time that the foundation was formed. The original volunteers, the parents that  had it started and their kids moved on. Also, years later, the initial enthusiasm of the Klausner family may have been cooled by the harsh reality: It is not that easy to help people, to reach out to those who we may benefit, but they don't know it yet, to find and inspire donors. Initial setup worked when it was about close friends and family coming together for a purpose but is limiting when we need to take the next step, open up and expand. Two concepts are key to what we do and that really speaks to me:"disability" and "community". We will always do things locally, support businesses, marketers and web designers that are from here.

  When I close my eyes I see the conductive education program growing. And I see it only as a beginning. I would like the Jordan Klausner Foundation to become a center, a hub if you will, for disability therapies and awareness. Horses and water worked wonders for me, I would like to see them as part of an inclusive, structured therapy program. As well as music and art therapy, paraffin wax heat treatment and herbal baths and massages to limit the spasticity, manual therapy and working with resistance. We need to find transportation for kids especially if they are not from here and in the future, think about accommodations for families.  I grew up with  cerebral palsy which left me with a lot of self confidence/self image  issues and phobias, so I see a strong need of having a psychologist on board. A legal assistance and civil rights program is a dream pet project of mine that I always hope to fund via a grant from the Florida Bar Foundation. I would like to work with marketers and PR experts to launch a bunch of public awareness campaigns. The problem is not only in how much or how little the disability community is aware of their rights, but how individuals with disability are perceived by the public and how visible they are. I also thought about scholarships for students in advanced degree programs to  help offset problems with standardized testing I have experienced myself. Lastly, I would like for us to be involved with socially relevant art and media projects of fresh up and coming creators.

  A lot of those things cannot be accomplished without money, because for most we can't rely on volunteers to provide them, at least in a structured, continuous manner. To do this, our Foundation needs to change. We may be small, but we have to be professional. That's why I'm seeking out help from grant writers and marketers, because I'm not qualified in those areas. Any non profit needs a continuous stream of funding to hire dedicated staff that will work just on this, all the time not just part time, to make all those things happen for us. What we need now is funding. Writing grant applications has little to do with inspiring stories and visions. It's focused, detailed, technical, repetitive. This is were my experience comes in: I'm not only an attorney, but I was a chairman of a foundation that I started for two years and being a media writer for six years exposed me to enough marketers and PR people to know what needs to happen although I can't do it myself.  We can carry James Klausner's dream further if we are open minded and adapt. But we gotta get started to get started.

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

Gainesville, FL, June 17, 2011 --(PR.com)-- 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 rstrzal@jordanklausner.org or follow us on Twitter:jklausnerfound