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.

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.

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.