Tuesday, December 31, 2013

Life with Disability: My parents the superhumans

"One day you'll turn to me and say: 'Dad, why didn't you push me even harder or whip me to force me to exercise more"- said my dad to me some twenty seven years ago. As if there was a simple correlation between doing my routines every day and jumping out of my chair that I would have regrets about as I got older. Through most of my writings I avoided criticizing them directly. It's not that I  agreed with everything they have done, but I didn't want the little issues to overshadow all the things they have done a sacrificed for me. Their health, their strength and their patience. To me they always will be the champions on the front of the war on Cerebral Palsy. I didn't want to seem ungrateful for all that they given to me and how they thought for me, sometimes by fighting me in a collaborate effort to get me where I am today. My parents were never perfect and didn't pretend that they were, but every time I mentioned something my parents did that I still don't understand or don't agree I felt I was giving a skewed account of my childhood. Because the good parts and the bad parts don't compare- and by dedicating much thought to where my parents may have been wrong I felt I was blowing it out of proportion and doing them a great disservice. But then I got to talk to a lot of parents in America. Mothers and fathers of kids with my disability who hope to give as much to their offspring as my family did. And pray that one day they will be as active and accomplished as I turned out to be. The flipside to continuously talking about my parents putting me first and doing everything they could to make me better was their feeling of not quite measuring up. My parents were not perfect, but I never forget that everything I am is because of them. And while there are things I disagree with I look at them with fondness. Because I understand where they were coming from. Fear. Fear for me, fear of what will become of me when they are gone, fear that every second I'm not moving, exercising, getting better is a moment wasted that I can never get back. They felt we have a small window to help me improve. A window that would shrink with every year that passes. That fear had to had been eating away at their core. Making them and our lives intense- trying to do as much as we could so we wouldn't turn around pinpointing to all the things we should have done. For many things, when in comes to my mother and father, I'm in awe. But I don't want to make it seem like I'm impossibly  raising the bar for other parents. Mine were  not superhumans although looking back, they often feel like they were. Parenting is about choices - I never claimed we made all the right ones. 27 years later  I don't wish my dad had whipped me more, but I also don't think of "not walking" as my life's most profound regret. I try not to dwell on what may have been, but yo make the best of what I have. And I think that's their greatest gift. To CP parents who contact me fearing they're already doing something wrong and missing opportunities I say: that is the sign that you're doing something right. Mine were the same way. Use your best judgment and do the best you can. Isn't that all you can do, anyway?

Friday, December 27, 2013


My grandfather had a small white house with a large orchard we would spend summers at when I was a little boy. Back then it was enchanting. As years gone by lack of modern amenities such as indoor plumbing, color TV and electricity without frequent outages kind of lost its charm so we eventually stopped going. One of the most magical places on his property was the shed full of things he never allowed to throw out. You may call it junk, I called it his treasures. Furs, furniture, machines of yesteryear, everything had some value to him, I actually he believed some of those things have value or may be useful in the future. Either way  it felt like he never parted with anything and it was just added to the pile. There was no order or logic to this collection- it was just a lot of stuff. My dad is similar in the sense. In our three bedroom apartment most if not all of the cabinet space was taken over by his nick nacks, parts and tools. To his credit, he did use some of it though as he was single handily responsible for all the remodeling and home improvement. Also, back in the day in Communist times everything was really hard to get, so I understand the hesitation of letting things go. But the problem was with all the things useful and not piled together, you couldn't really find anything and quickly you'd run out of space.  When no one was looking, my mother- the practical, level headed cleaner of the house would raid some of those places and indiscriminately throw most of it out. For years we had a large pile of newspapers in the living room. What for? Who knows. In that sense I take after my dad. I have the" I may need it at some point" or "It's going to be useful at some point" instinct.  Having a pile of junk is one thing, but keeping it organized is another. If my mom saw a mess in my room when I lived with my parents she'd clean it and dispose large quantities of it. I now think, quite frankly that I'll need it at some point in the future (and never "now") is a code word for never. Yes, I tend to be a hoarder myself. It's not even that I think I'll use most of it for anything, it's just that I don't have time or the energy and I just really, really don't want to go through the junk mail that comes in every week or the law magazines I just put on the top of my bookshelves always thinking: One day. But I really don't have the space in my one bedroom apartment to store any of that stuff. A very attractive offer from National Geographic came in the mail- an annual subscription for next to nothing, but all I could think of was another pile people will be tripping over a year from now. I guess I have a bit of my mother in me as well. Once in a while I take one of those lawn and leaves plastic bags and take on an "everything must go" attitude. I did that just before Christmas. Programs from the theatre, catalogs, mail, cards, I don't have room to be that sentimental. Some of the things from my old apartments- will I ever use it? Loading things in those bags and setting them in front of my door for pick up actually made me feel good. I was freer and lighter and I was letting things go. My mom uses cleaning as a way to process through some things and channel her stress into something productive. I did it to distract me from the work I should have been doing and yet it made me feel good. I was thinking of my dad and my grandpa  and how much better I feel not being tied down to a lot of things I don't need anymore anyway. It's a New Year, isn't it? So out with the old...    

Monday, December 23, 2013

Disability front and center

The only times that my disability became a conversation point when I was growing up was when a little child would turn to their parent  and ask: "Why is he in a wheelchair/stroller?" And then after the guardian got uncomfortable for a second, it was perfectly satisfied with the answer: "Because he can't walk". I don't remember ever explaining what my condition was and what it meant to anyone in elementary school. I can't be sure if any of the teachers didn't take upon themselves to have a special conversation with the class, but I never had to answer any uncomfortable questions or deal with anyone staring at me. To that extent nobody had any problems with the way I was. I had limited mobility, I crawled or leaned on furniture to move around, I needed support under my arm to lift my self into a desk chair. I guess you could say it's because I've spent eight years with those kids- a normal length of Polish elementary school at the time- so they got used to it. But the it seemed to make no difference to any of the transfer students I befriended as well. I guess to all of us it was who I  am, my natural state, why would anyone had issues with it. Kids knew that I had limited mobility and knew I did things differently, but seemed to get used to it very quickly. As for me I've had nightmares about ending up in a wheelchair or ending up in a care facility from a very early age, but that was a fear of the future, of what will become of me and how will I manage if my parents are not there. But I  never had to worry about how people see me, what they think when they meet me, do they pity me or my mother. As much as I preferred not to have Cerebral Palsy I got used to it as did everyone around me. I can think of very few occasions when my disability became front and center. Once, I must have been about 11 when an older lady I've never met stopped me and mom. "I feel so bad for you"- she said. I guess my mother wanted to make sure I process the experience in the right way because I remember we had a conversation about it. "Why would she pity me? I feel sorry for her"- I said-" She's very old, doesn't have much time left and can barely move". My mother loved my response and it became one of the family stories we shared over a meal. But I guess at that point I also understood how people project - they make a bigger deal out of something they think they'd miss- like running, dancing, skiing- and they feel I should miss it too, when in reality some of those things I don't even like watching others do- and had no desire to do it myself. And for some reason - like that lady in our lobby- some think that their life is better than mine.

The schedule for my class was  primarily designed so we wouldn't have to switch rooms often. Teachers came to us and we'd mostly be in one place. Back then I insisted on sitting in a school desk chair like any other kid. If I needed to switch rooms my parents came after class as they had my schedule hanging in our living room. They'd just grab me under my arms and walk with me to the next location. But sometimes they were late. There was a boy, a year, maybe two older who was about to have a class in the  room mine just ended. We still had a few minutes and I was waiting for my parents to come and get me. The kid thought I was just trying his patience as I was still sitting in his spot. Not knowing I couldn't walk he came from behind and pulled the chair from under me as I fell to the ground. Friends who waited with me did nothing to explain, just said "Leave him alone". The boy panicked while I was fine and got back up on that chair. I guess he was profoundly affected by it because somehow he looked up our address and showed up at our door. He felt he needed to apologize, I suspect  he had a conversation with his parents and he felt bad. Awkward situation for both of us, I never had a boy bring me flowers before.

Tuesday, December 17, 2013

My Brother, the parent

When I was ten years old, my mother flew to Budapest for the weekend to take care of some business leaving my brother in charge. We spent most of the day playing games on his computer that we hooked up to the living room TV, something we only got to do when our parents were not home, but when it was time for me to go to my room and do homework I wasn't feeling so well. I was coming down with a fever that night, a prelude to a few days later turned out to be severe case of tonsillitis. Yet my brother thought I was faking it or just didn't feel he could let me not do my school work and he famously made me sit at desk for a few hours anyway. That story became quite famous in our family. My brother jokes that the way mom tells it, with him sitting me " right under the desk lamp's hot light bulb"  it sounds as if the lamp, the desk and the homework were the things that actually made me sick. It was also her way to illustrate how all hell's breaking loose as soon as she leaves us together. Truth of the matter is, he was never the type to enjoy taking care of other people. When my parents ordered him to take me out on my bicycle he told me to do laps around the courtyard while he was plying ball with his friend. I managed to flip to the side and cut my arm right under his watch, not an easy thing to do with a three regular sized-wheel bike. Over the last few years I wrote quite extensively about parenthood. How it's something that most people succeed in instinctively and when the time comes they rise to the occasion.   With that said I really wanted to recognize my brother for the amazing parent he became. When I first heard he was becoming a father I thought to myself "I never even knew he liked children around". And I wasn't there when he was transforming- first with his son, then with his daughter that came soon after. It's not the person that recognize from my childhood. Loving and dedicated, just can't wait to rush home and spend time with his kids. Savoring every moment.  Perhaps it's because how young my niece and nephew are and there will come a time when saying those things becomes embarrassing, but he makes sure he tells them he loves them and that they say it back. When we were little although we always knew our parents loved us I don't really remember verbalizing it. I don't think we ever spoke about our emotions much at all. Thankfully he doesn't have to deal with a disability in the family, but I have no doubt he'd not only grab that challenge by the horns, but be on the forefront of every innovation, method and the latest research. I guess parenting changes people and gives them strength to face whatever   comes. And in that way, whenever I hear from parents of kids Cerebral Palsy who have doubts of what to do and how to do it, I think that although I have no idea of what it's like to be a parent I look to my brother for inspiration. You'll know what to do when the time comes.

Sunday, December 15, 2013

Let's work together

The Munich Conductive Education World Congress re-energized me in some ways, while clipping my wings and crushing my dreams in others. Many people got to see me speak. A few reached out to me right after to say how impressed and inspired they were to hear my life story and things I accomplished. It's obviously flattering when someone has nice things to say, but I'm not here to be admired. But if I can, I'd like to put it to good use and make a difference. I would like nothing more than to be involved with disability organizations, Cerebral Palsy causes and Conductive Education schools. Wouldn't it be amazing to have a career in  something you're passionate about, something you can stand behind and support, helping people just like you?  At the beginning of the year I started a nonprofit to deal with issues other people were overlooking and I have not been very successful attracting other people to it. At moments like these a thought pops to my head- maybe I should be doing something else, somewhere else, maybe there's a better way to tap into my life experiences and skills. I said it once and I'll say it again- I'm willing to discuss any new opportunity that opens up. My biggest regret after my Munich speech would be, if nothing comes out of it. If all that happened was that I went, spoke, people got to hear me and perhaps got interested for five minutes and then it ended as soon as I went off. Just one, insignificant moment in time. Yes, I got a few emails after I got home. Emails that perhaps I got too excited about, a mistake I always make. I should really curb my enthusiasm a bit more. So many other times someone gets in touch with me, we start talking, I get my hopes up and nothing ever happens. This time a few Conductive Education centers reached out saying, we were blown away, is there a way we can work together? Could you perhaps come and do some presentations, like the one in Munich? And I always say: Great, what did you have in mind? And this is usually how the communication ends. Because a lot of time they really have no idea how and what for they would use me. A lot of times I feel like they expect me to come up with ways I can get involved. I'm interesting to have around. Like an alien-life form, a missing link or a unicorn, but I can't think of any practical ways a lot of these places would have me on-board. I would match rather do something like this than trying to grab any random client I can get. Trying to practice law often test my patience, I often deal with people who have no respect for me, my energy and my time. It's a stressful line of work that leaves me depleted and second guessing my life choices. I wouldn't mind trying something else.  And while making big money and having a lot of possessions never made it on my to-do list, I do have rent to pay. I can't afford to volunteer much more time, no matter how close to my heart the cause may be. I tried it before, led me nowhere, other than making me one year older. I'm also not a parent of a child with Cerebral Palsy who has the mobility, the time, the energy to have a full time job and then run a CE school on the weekends. I do need to look out for my own future and stability.  I've also heard from the North American CE Association. I think they are amazing people and I admire everyone who tries to make a difference. A few weeks ago we've had a very nice conversation, we've exchanged pleasantries. But I don't think anything will come out of it. Perhaps I'll pay the membership fee and join like they offered, but a problem is: we can talk, you can ask me questions, you can even touch me and aside from a few compliments nothing ever happens.  But this made me think. If where I am is really as "amazing" as they try to see it as perhaps I should be more proactive. I've decided to reach out to disability nonprofits across Florida and CE centers from around America. I have all those LinkedIn credits and it's time to start spending them. And this time, it's me asking:" Have you heard about me? Maybe there's a way we can work together?"

Tuesday, December 10, 2013

Don't watch me

I can't quite explain it. When somebody's waiting for me at the door everything just takes so much longer. It feels like when I'm fighting against the clock my body becomes more tense, stiff and then just doesn't cooperate with me easily until I'm able to relax. I guess it's the idea that I'm making them wait or that I'm running late that makes me just so much much more nervous. Getting dressed, moving to the door or putting on my shoes goes so much faster when I have a few extra minutes to spare. I've been doing it long enough to know that certain things I need to do much more in advance to avoid surprises. Things like buttoning up a dress shirt. It's tricky enough if like me you try to do it with your one good hand, but when I know I need to be out the door in five minutes I work myself up into a state of panic. All of the sudden my hand doesn't want to fit into the glove and I struggle to put it on. Time is ticking away. Oops I dropped my keys again. I try to get myself plenty of time to get ready not because I actually need it "to get ready" but to give myself the comfort of being able to do it faster. For most people, adrenaline rush is what makes them run that extra mile, lift that heavy weight or run after that bus that is about leave the stop. With me, it's different. When I see a bus that I simply need to catch and need to get there quickly, my muscles tense up, my body turns heavy and every move I make feels like I'm fighting against it. I hate when somebody watches me getting into my chair or just finishing getting ready, like for example putting on my shoes or jacket. It makes me very self conscious as I know somebody is watching, waiting, rushing. Stress can come over in professional situations too- when I'm fighting the courtroom carpet to roll up to the witness stand. In law school we figured out a way to not have me moving around during trial practice class taking to much time. My partner would just assist me joggling the props and exhibits. When there's a problem, there's also a solution. My dad would often stand silently in the back as I was getting into my chair for example and then voice his opinion. And that type of feedback only made me feel uncomfortable. Nobody likes to be criticized especially when they struggle. Truth be told, my dad would do it with any miscalculated move I made. Watching and criticizing. I think he thought he was helping me. As if this third person analysis was something I could use to avoid it in the future or a thing I was not well aware of.  Yes, I know I made a mistake. I'm the one who slipped and ended up on the floor. Yes, I slipped. I lost the grip. I lost my balance. It happens. It happens till this day from time to time. Comments from the peanut gallery are really not welcome as I struggle to regain my composure. I don't want an instant replay. Me and my body are quite a team. And most of the time I get it to do what I want. But this requires me figuring out how. Without external pressure.

Monday, December 9, 2013

Advice for parents: What to do about your Cerebral Palsy child

A while ago I reached out to a parent of a child with my type of Cerebral Palsy. They were very excited to hear from me as someone who has been through all of this and -not without dedication and sacrifice from many people in his life managed to get education and a career. Their child was too young to communicate on their own and talking to me may have felt in a way as a reassuring glimpse into the future. I in turn saw a familiar blend of eagerness to get started, hope- that with plenty of rehabilitation they get beat this, fear- that every moment is precious and many were already lost. But most of all- that caring for a special needs child is a gargantuan task and  they could not shake the feeling that with every turn they could be making a mistake. "You'll make plenty of mistakes"- I said- "But you'll get most things right". And I think that's a true statement. Raising children is difficult on its own, a child with a disability is an extra level of complexity. Kids don't come with instructions and what may work with one, won't necessarily work with another. Think of me and my brother for an example. He was a little rascal growing up that would get in trouble. I wasn't- not only because I couldn't physically move as much but I was the sensitive one with big imagination, constantly afraid of everything. Our mother tried to treat us equally and had a pretty tight grip on us both. My brother perhaps needed it, as despite his good grades he was a prankster. I ended being stressed about  everything and till this day quite jumpy- and I didn't feel like my mother's hands on attitude really helped me get out my own head. As a child I may have been talkative, but in many ways introverted.

1. Breathe.
I really believe that kids are not made out of China. Yes, as a parent sometimes you will make a mistake. You know how your parents always said, you'll understand when you're an adult? Well, there are things mine did that I don't understand till this day and others I openly disagree with.  Did any of it ruin my life or scarred me for the rest of my days? Not that I can think of. If we were really as delicate as psychology tends to suggest and we were to believe that every decision and every reaction is a matter of life and death with countless implications that cannot be reverted - how would we ever survive evolution as species. Breathe, do you best, adjust, breathe again. Your child may be tougher than you think. I've written countless texts about all the sacrifices my parents have made for me.  Simply put I wouldn't be were I am if it wasn't for all their gave up for me.I was hesitant and stayed silent  about the mistakes that they have made because I didn't want to shatter the image of them that I created for my readers with minor things that felt petty and insignificant.  And yet everybody has something they can blame their parents for and remember thirty years down the line.

2. Try Anything
I can't tell you what forms of therapy to try. I can't pick a rehabilitation facility for you. If you read my blog you'll know that I happen to be a big proponent of Conductive Education because that's what incidentally worked  for me in combination with other things and I'm more than willing to talk about it. You have to figure out what will work for you and your child. My parents were more than happy to  try out or read on any new approach out there. Many did not work or did not have a lasting effect, but we never stopped searching. And just because Peto was our man thing doesn't mean that my mother didn't insist on a host of other physical activities in between: horses, biking, swimming. You never know where the next big break might come from.

3. Be reasonable.
With that said, remember that there are only 24 hours in a day and there's only so much you can try. As someone who grew up with a very structured, physical activity driven childhood I say push your child towards greatness but don't push it or yourself too hard. I guess we really didn't know what to expect and did not temper our expectations accordingly, but I did grow up feeling a certain degree of failure, because despite our best tries I never ended up walking and to me it seemed like I disappointed my parent. Be smart navigating times and schedules. A child needs to be challenged physically and intellectually, excel academically and develop social skills. It's often tempting to focus on that one thing, that new method neglecting everything else, but not worth it.

4. Give space.
As someone who grew up being carried or wheeled everywhere by his parents I wanted to caution you about how difficult it is to develop your own identity, your own space and secrets if there constantly is  someone virtually attached to you. My mother would point out that when I was very little I could have not been left alone and cried for companionship and she'd be right. I just don't know which was the cause and which the effect. We all have a need for physical boundaries and physical space. Note how we are forced to give some of it up when we can't move on our own.

5. Give support and push harder.
Giving space doesn't mean that anyone should be just left alone. Throughout the years of rehabilitation, for many hours in the days my parents pushed me  to try harder, make one extra step and didn't seem satisfied unless I was exhausted and sweaty.

6. Remember: All kids are different.
My brother and I had different emotional needs. Not so much because of my disability but because we were different people. We reacted to the same things in different ways. We were not similar at all growing up when it came to hobbies, academic interests, the like or-in my case- dislikes of all things sports related or our choice of literature. We differ greatly in temperament and how we relate to the world. What worked on him growing up may have not worked on me.There's no one size fits all solution to parenthood

7. Give yourself.
Go ahead, browse through my blog. I have written repeatedly how much my parents have given up for me carrying me to school every day. I'm a "success story" if you will only because the one thing they have never given up on was me. While other parents around us did, we kept going strong- at the price of my mom and dad developing severe back problems.

8. Have hope and be happy.
What my parents sacrificed gave me in turn this great sense of guilt and uncertainty, fear for the future if you will. Push your kids harder, inspire them to walk, but never stop reassuring them that if it doesn't work, it's not their fault. That life goes on, and  wheelchair is not the end of the world. That whatever they end up to be, they will always be enough. And they should never stop dreaming and aiming high. I can tell you, that when I was growing up we felt like the most average family. We just did certain things differently. The special needs issue doesn't come out front and center every day. Most times, it's not even a factor. But I wish I had more of a sense of what my future was going to be like. Perhaps perhaps I would be so scared all the time.

Friday, December 6, 2013

How it all started

I don't quite remember what came first: When I was in my very early teens my brother announced he was going to Paris with his girlfriend for a few weeks  A cross-Europe roadtrip of a lifetime with a planned visit at Euro Disney. My parents decided to pay for the drive and stay as a gift- as we he was about to start university later in the fall.  As a child I was huge Disney fan and I it was my dream to visit a theme park like that. But he was about to experience it. At at that moment I started to feel trapped. I had nothing to look forward to, life was going to pass me by. There would be more and more things I would be excluded from and I was stuck at the apartment with my parents as my brother got to live his life. It would only get worse as I got older and heavier. A pretty gloomy vision for an 11-year old.  I remember having a very emotional reaction that day and my parents thinking I was acting out as a spoiled brat sent me to my room where I was crying in the dark. It was one of the moments when I told myself that something needed to change. That I had to find some way, some places to have a life that didn't feel like an attachment to my parents. It had less to do with my brother getting to have the time of his life in France and more with my realization and the extreme feeling of hopelessness that came over me. I also remember one New Year's Eve weekend in the early 90's. My brother and his girlfriend were house sitting for a friend. Quite a comfortable villa, with minimal glass furniture, white walls  and lots of light. It was the first time that I got to stay somewhere new without my parents present. And in a way I felt liberated. I didn't get to get out of the house at that age much. Rarely would I go somewhere that wasn't my aunt's, uncle's or grandmother's place. Even on extended school trips my dad would not only always be there, but most likely in the room right there with me, separate from the other kids. Here was I with  no one to watch me but my 19- year old perhaps, brother. And it made me feel like we were equals of sorts and I felt like a grown up. A partner. Like I was experiencing something new. My brother made sure I'd make my own toast and wash the plate after I was done. And I thought lik a life without a parent around was not an impossibility at all. In this new setting I was not only able to do things for myself but I liked it! Who knew. Nobody forced me to do it. It's new circumstance that made me branch out and try new things. When I went back home two days later I felt depressed in a way. I was stepping back into that old life when I knew there was another way to live. The apartment we lived in since I was born felt small and stuffy all of the sudden. The memory of that weekend, the image of that house was what drove me to independence today. The thought that I got a lick of doing things for myself and I wanted more. Because I liked how it felt and how I saw myself. As somebody who's able to do things. Don't you know how amazing it is?

Wednesday, December 4, 2013

Push me harder

When I was a in my early teens, my parents tried a number of physical activities to integrate into my schedule. Twice a week I would go to the swimming pool in the area, every Monday I'd ride horses and every day after school I was biking. It seemed however that both of them had a different idea behind making me do all those things. My mom wanted me to primarily get the exercise. The movement, the accelerated heart rate, the routine. My dad was pushing me to do it as an activity I could be good at. Not so much for the health benefits, but beyond- because that's what other boys did. For months for example,  for months he tried to teach me to swim- and really pushed me hard. While my mom didn't really care if I only splashed around in the pool with my floaters on, my dad had the whole hour planned out for me with laps in different styles. He's the reason I fear water today. What can be a very pleasant experience for a child with Cerebral Palsy, because you feel much lighter and can walk in the water without your body weight and spasicity dragging you down for me was a nightmare. Every time it was time for me to go to the pool with me I watched the clock hoping he'd be late. It didn't need to turn into such traumatic experience, but it did and I loathed it and I feared it all week long. He'd drag me out out to the deep water and make swim towards the shallow end. As he was walking away from me knowing I can't reach the bottom with my feet would often cause me to panic. I was never able to simply relax and have the training take over. That state of fear made me do a lot of exhausting tense, rapid moves until I was in the safer area. Being in the deep end felt like my body was frozen with terror. I guess it all started when my dad tried to teach me to swim on my back a long time before. I think I didn't let the water carry me by assuming a flat and straight position and for a few seconds I went under. My father decided nothing bad was happening and I had to figure it out on my own so he did nothing. I still know the technique for some of the styles, but every time I'm in a pool I'm afraid I'll drawn. I guess some experiences you don't easily get over. Was it as necessary to push me as hard as he did? Probably not. But my father taught every other kid in my family how to swim and I guess it was hard for him to accept that I was different. All my classmates were swimming- I guess for him it was natural to teach me something "all the boys my age" did. Just like when he tried to get me to learn to play poker. Another activity I don't care for. Or when we sat down a few times to have me figure out chess moves when I was eight.

When I was twelve, I started hippotherapy. My instructors quickly figured out that I'm a natural with horses and I could be doing so much more than just exercises. So, our weekly trips to the forest begun, and then they wanted me to guide the horse on my own. That part was fun, but I never enjoyed galloping- there was something about the animal having all four legs in the air at once that made me feel like I was falling down. I'm not quite sure how that experience ended, but I miss horseback riding. Not because I dreamt of being a great rider, but I enjoyed the rhythmic  moves and the warmth of the horse against the cool breeze of the woods in Autumn. I've had a bicycle with  two  big wheels in the back instead of one for balance and straps to tie my feet to pedals. Mostly it set in one place with the wheels lifted so I can bike in the living room for exercise. My dad liked to take me outside on it to trek around the neighborhood. I can't say if I liked it exactly. I still say a bike sit is designed by a sadist and not with males in mind. But I liked biking around with my classmates who we'd call up to join us. With teasing and laughs the goal was to get some bubble gum from my aunt's convenience  store. As Andrew Sutton made me think about what the "normal" is with regard to disability,and how others now look at their experiences in Europe and say that growing up they were made feel like their condition was a problem needed fixing, I can't stop thinking about my parents motivations for pushing me hard as well. To do things that "other kids do". Isn't that another way of saying that they wanted to make me "normal" whatever "normal" is?

Sunday, December 1, 2013

Disability and strict parenting.

I had a strict bedtime until I was fifteen. Lights out by 9 pm. It didn't matter if it was a school night or a weekend, if there was a movie that everyone at school was watching or if it was ending in 15 minutes. It simply wasn't a discussion you'd have with my mother. Often it was as simple as a look or a gesture and you knew that you were done for the night. There was no reasoning, no burgeoning with my mother, you could pout until you were blue in the face, proclaim how "unfair" your life was all you wanted, still wouldn't change anything. There was only one way of doing things in our household and it was my mother's. Have you ever seen those movie shows were kids and parents have weekly meetings and debate things? Well, we were not like the Cosbys. Back then I didn't know why she felt to have such strict, "rules are rules" approach to everything. And I still don't get it today. Part of the reason I loved staying with my aunts that much (and you can pick any aunt from either side of the family) was that on the weekends me and my cousins were allowed to fall asleep in front of a TV watching some obscure horror movie on a pull out couch. At the same time my mother felt like a psychic in many ways. Whatever it was she'd always get it out of me just by looking at my face. I simply couldn't lie to her about anything. That was the weirdest thing. I was for the most part, a very good kid. Both of us were, bringing the good grades and honor diplomas. But my brother from time to time would get in trouble when hanging with his friends- boys being boys - playing about in the area. I guess that was the thing. My brother always had other avenues, other places to go all the time. If it so happened that he and my parents had an argument, he'd storm off somewhere. Outside of school, I was always at home.For the large part of my childhood I felt that there was nowhere I could hide from my mother. I was always there, at her mercy, with her ever seeing eye. And as a stay at home mother she was always there as well. My disability only made it more severe as I simply couldn't physically go anywhere without my parents. How can I show my independence, how can I be mad at you if you're always there, I rely on you for everything and you rarely listen. It really was getting me more and more frustrated, especially when I was a teen. I was getting older and nobody seemed to notice. Nobody cared that I was aging and changing, that I had points and ideas and feelings that were valid. Like I was trapped in a cage of my emotions, my body and this apartment and there was no way out.  From time to time I'd throw a tantrum. Not often, and they may have felt like it was coming out of nowhere, but to me it was a final straw. To my parents it looked like hysteria. When I was fifteen my mom went to Germany for three months and I just started new school. My dad had a more relaxed stance on parenting. He also worked nights twice a week, so he had to trust me that I would act in my best interest and know how to get up for school the next morning. For a while I felt like I was one of those teenagers on TV and my new life was just beginning. My new bedtime was sometime around eleven but if my dad saw that I wanted to stay up to watch an award ceremony he was fine with that. When my mother returned that December we went back to a more strictly enforced bedtime, although the bedtime stayed at 11. I think this was one of the points she had to unwillingly cave on. From that point on there were more moments of frustrations, more, "but I'm almost 18" bursts, and more of my mom, as much as we all loved her trying to control all of her dominion. Luckily, as she went to work that year there was less of a need to fish for information of what happened at school and what felt like my inner, deepest most intimate thoughts. For the most time she now wasn't there. And when she was- she was too tired. So the walking in without knocking that try as I may I couldn't educate my parents on even as I was visiting twenty years later- reduced to a more reasonable amount. The going through my things- only happened during cleaning. Did I mention that my parents were always struggling with the word "privacy"? But at least growing up as I look at it now- it was better to deal with "unreasonable" and "nounderstanding" parents then thinking so much about that one thing truly limiting me at the time. My disability