Relationships

This has got to be the hardest challenge to people with cerebral palsy to tackle. I would be the quickest to admit that i'm nowhere near considered an expert at this, but I would like to offer some insight on my own experiance on relationships. Remember, whether you are streight, gay, or bi we all go throught the same emotions, disabled or not.

One of the hardest elaments to master is developing a healthy self image because when you think of your own cerebral palsy or disability you multiply it into a big disability or a big problem. Self-image consist of three types: how the individual sees himself or herself, how others see the individual, and how the individual perceives others see him or her. Since most of us see our cerebral palsy or whatever our disability is as a BIG problem we tend to lower our confidance and hide. I did this when i started looking at myself with a magnifying glass. I made it worse for myself to ask a girl out.you tend to think you know how the other person feel wout even talking them yet. A lot of times what makes or breaks our confidance is how other see us. Some just don't understand and some make a pre- judged conclusion base on our apperance. As you can see see, sometimes we are right and sometimes we are wrong about how we think others perceive us.

We are quite self-conscious and concerned about our personal image, and we often consider our partners an extension of ourselves. A young man often tries to enhance his self-image by being seen with an attractive young woman, and vice versa. The stresses generated by the cultural focus on physical appearance are present not only for the person who has cerebral palsy, but for many people who may not be considered as beautiful. This is also a stage in life, however, when individuals are learning that there is more to a person than his or her appearance. It becomes clear that a relationship is much more dependent on communication, understanding, mutual care and concern.

I do not believe it is the brain damage you encountered at birth or the lesions on your future wife's spine that are going to make you a more compatible couple or more socially aware parents.

I think we, as people with disabilities sell ourselves very short when we engage in this discussion. Disability is a single aspect of personhood, and as such should be only a factor in determining a person's viability as a life partner.

When people with disability automatically exclude those without, they are committing the same sort of discrimination that they often feel they are victim of.Lack of disability is not indicative of any social characteristic. Presence of disability does not equate to a better understanding of limitations.If a person feels more comfortable dating others with disabilities, that is a choice. I often encounter people who assume that we all date other PWD's as a matter of course. I think that is what society perceives as our norm. So no, I do not believe that choosing a partner without disability reflects any societal norm at all.

It also makes me very uncomfortable when people talk about choosing a partner without disabilities so that they can be cared for by that partner. Many, many people with disabilities must bear the consequences of that kind of thinking. It hurts us all. It makes people fear being with us because they do not want to be over burdened as caregivers.

Who you love is possibly the pinnacle choice of your life. Make it from the most open and informed perspective you can. I am very proud to say, I will defend with every fiber of my being that my future lover's ability to help me off of the floor or drive me to the hospital have nothing to do with why we are in love. {It was not easy to get here. There is much work that goes into our continued understanding and love for one another.That work results in the most wonderful life either of us can imagine,even after more than a decade.

Disability does not make us better partners, people, parents, or family members. It might make us better amusement park companions. Anything else we have to offer is shaped by experiences, not deficits.

Exercise

I hope this blog entry reaches every single person with Cerebral Palsy, their parents or anyone associated with someone with Cerebral Palsy. Whether the person has mild Cerebral Palsy or severe, i'd like to share some insights that could go a very long way for a very long time. This entry may seems more benaficial to those who only have mild to moderate Cerebral Palsy, but make no misconception, it targets those who has moderate to severe Cerebral Palsy as well.

First I want to point out some physiological aspect of growing. When you are young, whether you are “normal” or you have Cereral Palsy, you come into this world a very soft, very flexable person. This is why it is very hard for a very young child to break a arm or a leg. The bone would just bend because it is still forming and the bone tissue is still soft. Not to say the bone won't break, eventually it will break if the bone is bent too far; but, to give you a mental picture of how the body grows. This also goes for our musclue formation. The muscles are very soft and flexable; therefore, streching comes easier.

Now, the reason I gave you a physiological run down for a childs physical growth period is because I wanted to give you a mental picture of how important this period is for exercizing regularly, ever physical tharapy. You see, when your body matures, or you may say stops growing, your body becomes more profound, solid and less flexable. It becomes harder to strech your muscles as you get older.

From a nutritional standpoint, what you eat is crucial whether you have Cerebral palsy or not. My original thought was eating more fruits and vegatables helps keeps your muscles more soft and flexable as oppose to eating too much solid or junk food will make your muscles a bit tight and less flexable, but most of the things i read concentrate on nutrious food that can be easily consumed out of concerns to eliminate digestion problems. Either way, the goal is the same, which is to promote good health and growth. The organization 4 My Child, which focuses on improving the conditions of children with cerebral palsy, states that vitamins and nutrients that are found in fruits are essential for proper growth and health of the brain. Since my focus is more on muscle growth for exercizing my findings are equally important. Since my focus is on the important of exercizing when you are young with Cerebral Palsy i will not get too technical with physiology and nutritional importance.

There are so many exercises you can do. Each person with Cerebral Palsy is unique; therefore, each person has their own muscle patterns they need to tackle. Some muscle patterns prevent you from doing everyday tasks that non disable people take for granted. One small example is when I was little i could not hold my head streight and bring my left hand up with a spoon to feed myself. My head would just turn to the right. It was explained that i had a certain muscle pattern that causes such movement. So I was given exercises to do to break that particular muscle pattern. And it was important to break that muscle pattern at an early age because the longer an unwanted muscle pattern was preserves the harder it is to break.

Regardless to how servere ones Cerebral palsy is, swimming is highly reccomended. Not necessarily to learn to swim, but so work all your muscles. The warm water allows the muscles to relax while you are working on your muscles. The warm water also helps blood and oxygen flow extremely easier to your muscles. So, if you can, do all the exercises you do in the pool. A lot of times you can strech you muscles further in the warm pool water.

You can make progress when your body is mature, no doubt. The main goal is to keep your muscles streched and strong when you exercise, but you need to be considtant. Also, exercising helps with te flow of oxygen to lungs and blood, it helps keep your heart stong and beating properly, and helps keep the other organs healthy and strong. As I pointed out how important it is to execise and tackle unwanted muscle patterns when you're young, gave you reasons to eat healthily, and that when you body matures it gets hard to exercise; however, there are other reasons society places on us to give us obsticles, such as: work, school—if you decide to go to college, and other societal norms. Also it may not by easy to find the help you need when you are older then when you are younger.

Bullying

I guess I should say I should feel very fortunate because there are some things that exist now that almost didn't exist in the seventies and early eighties, the time I was in grade school. When I thought up this topic I put it off for a couple of weeks. I knew that this topic is now a regular act that happens so much that its almost a “culture shock” to me, not because it was out of my nature or somewhat unfamiliar, but because of the extreme people take it. When I write on a particular topic I like to relate it to my own experiances, but with this one I have almost no experience in it. at most, not enough to affect me.

When I think someone being bullied I think of “Waldo” of the music video by Van Halen called “Hot for Teacher”. Looking back at the few times I was bullied it was outside of school and/or it was because the person didnt know me or didn't understand my disability and that is usually how bullying starts. Nowadays bullying can get extremely brutal.

Bullying is a form of aggressive behavior manifested by the use of force or coercion to affect others, particularly when the behavior is habitual and involves an imbalance of power. It can include verbal harassment, physical assult or coercion and may be directed repeatedly towards particular victims, perhaps on grounds of race, religion, gender, sexuality, or ability. This definition sounds very extreme from the bullying I was exposed to. It was more focused on my ability by way of teasing, making fun of, or copying my disability.

Kids who are bullied can experience negative physical, school, and mental health issues. Kids who are bullied are more likely to experience:

Depression and anxiety, increased feelings of sadness and loneliness, changes in sleep and eating patterns, and loss of interest in activities they used to enjoy. These issues may persist into adulthood.

Health complaints

Decreased academic achievement—GPA and standardized test scores—and school participation. They are more likely to miss, skip, or drop out of school.

A very small number of bullied children might retaliate through extremely violent measures. In 12 of 15 school shooting cases in the 1990s, the shooters had a history of being bullied.

Here is a link that I think you'll enjoy... it talks about bullying and it also has an ebook: http://www.themermaidinthegherkinjar.com/ . It's about a kid with Cerebral Palsy.

The 'Making it Real' videos feature 14 inspiring people - musicians, an executive, students, athletes and paralympians -- who live with cerebral palsy. They talk about some of life's big issues which affect everyone of us.
I hope that the people who shared their stories will motivate you to live your best life, and prompt you to help others do the same

Tony Bartoli was bullied in school, pushed down multiple times and horribly mistreated because he had cerebral palsy. Now Tony travels around the country speaking on bullying, letting people know what they can do about it. He can be reached at www.TonyB4Hope.com

Special Education

I'm very open for debate or proven otherwise on this next topic. I have went to special education school all my grammer school life. Looking back on it I think to myself, what a joke. I mean, here we have schools that help students with special needs in a way that addresses the students' individual differences and needs. Ideally, this process involves the individually planned and systematically monitored arrangement of teaching procedures, adapted equipment and materials, accessible settings, and other interventions designed to help learners with special needs achieve a higher level of personal self-sufficiency and success in school and community than would be available if the student were only given access to a typical classroom education. Ok, got it? Now, as systematically as this sound I applause the creator, give him/her a noble prize. I know this sound negative, but hear me out before any conclusion is sought.

Now that this great system is in effect, let's go a step further. We have what is called an IEP, which stand for “Individualized Education Plan”. It's a annual plan put force by a meeting which includes teatchers and individual parents to keep track of progess and most of all is designed to meet the special educational needs of one child, who may have a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would. Nnow, what happens after the meeting? The plan goes on file and the file goes into the filing cabinet, right? Systematiclly yes, that is pretty accurate.

I can understand why there is a need for the IEP, i'm not going to be naive about it. There are a lot of students that need that extra help and guidance. From my experiance, I saw the IEP as a joke. Here, i was the smartest student in my school by far, I felt most of the teacher didn't see me that way. The majority of the kids were mostly unable to get past the first grade level, so the teachers didn't really have to teach. I dont know if the teachers didn't care, wasn't aware of my avanceness, or they were being just plain naive.

I know there are special education teacheers out there who really care, there has to be. I had one teacher that knew me well. She knew how smart I was. She had me on track, even above my grade level. But when I got to the fourth grade the teacher that knew me very well retired. I didnt think anything of it at the time but looking back at that time makes me sad. So after the tacher that I liked retired everything seemed to be thrown up in the air. The school was like a day care, nothing really going on. Using the famous “if I had it to do over” expression, I wish I was more into my own education. There are so many things I wish I did differently academically. I didn't have the mentality I have now back then, and nobody wasn't very encouraging. If I wasn't as intellagent as I was, I could have just let my self go and not rove I could get my high school deploma.

This happens too much, where the students intellagent is overlooked or ignore. Even when a student is “mainstreamed”, meaning educating students with special needs in classes with non-disabled students during specific time periods based on their skills. Students with special needs are segregated in separate classes exclusively for students with special needs for the rest of the school day. A lot of time such students spend all day in these “special classes'. These setups are no different then an all disabled student school, these students who aee in this setting have the same IEP setting. Historically, most students with special needs have been excluded from school. Such exclusion still affects about 23 million disabled children worldwide, particularly in poor, rural areas of developing countries.

Let's get back on track before I get too carried away. I originally got this topic idea afrer talking to a few of my readers and discussing their concerns about their child with cerebral palsy. So, i'd thought it was worthwhile to share my thought and experiances. I believe the special education system is remarkable. I also beleive if their is a person who has a desire to be a special education teacher I hiighly recommend them to choose a specialize area. By doing so, the goal of that particular special education teacher will be achievable and most enjoyable. It seems to me just being a “general” special education teacher is not goal oriented.

I think my idea is very practical because it benafits the students, parents and the teacher. It eliminates frustrations. Whether the child is blind, deaf, physically challenged, or mentally challenged such a specialized special education teacher understands such students limitation. I'm not nearly this bad but lets take a child with cerebral palsy and moderate to severe speech impediment. We know that he is very bright and intellagent, and possibly has a mind like Albert Einstein or Stephen Hanking for that matter. Now how can we get that knowledge out? How can they express their ideas? There one place I can think or, whick I feel there should more of, it is called the Bridge School. The Bridge School is a non-profit organization whose mission is to ensure that individuals with severe speech and physical impairments achieve full participation in their communities through the use of augmentative & alternative means of communication (AAC) and assistive technology (AT) applications and through the development, implementation and dissemination of innovative life-long educational strategies. The Bridge School is an internationally recognized leader in the education of children who use augmentative and alternative communication and has developed unique programs and trained highly skilled professionals in the use of state of the art assistive technology. Now this is brilliant!

The Bridge School is just one of the outstanding programs out there. And although the special educational system has a good cause and has it's own flaws parents need to stay focus on their child needs. Unfortunately, sometimes the parents don't pay attention thinking their child is in good hands. Not to say the teachers are bad, but we are human. We don't always see things. We are lazy. And we lose emthuiasm. And because we human, we need to be our childs voice and fight for them because no one knows your child better then you.

Will

As I was wrestling with thoughts pondering on my topic for this entry I usual read or watch videos to simulate my mind for ideas. I have very dear friend that is very fond of me. Sadly we cannot see each other as we would like to because she lives on the other side in paradise. She lives in Saudi Arabia, and she is a sunni Muslim, very orthodox when it comes to the Islamic religion which I became very fond of. We share our experiances we have in each other society. How we eat, how live and what is within the norm of such society.

Today she sent me a short documentry video of a very severely disabled man. I remember her telling that in her society they take extry care of their people whom are disabled. As I was watching this video I had several thoughts woundering around my head. My first thought was no matter how perfect a society may seem it has it's flaws, it still has it's share of discrimination, and it's share of lack of awareness in terms understanding people with disabilities.

Another thing i'm very aware of that happens all too often is that in the United States is although some members of the society may not understand a certain disability or don't understand disabilities in gereal, most of these people are just nieve and insentative about their understanding. The video reinforces my understanding that we re not the only ones, this very well goes on in other societies as well. Why? Because it is out of the norm, and people have a hard time accepting.

After watching the video several times it is very worthwhile to note that there is love in this world. There is the need to fight for others. To fight for those who need a helping voice. In a convincing way, it is very worthwhile to people who are nieve in their perception and understanding of such disabilities that they very well know how to accommodate. Some people need that extra push, meaning talked to, to remind or point out to them that ability isn't always physical.

The main theme of the video is not the difference between two soctieties or it's simularities, how disabled people are treated, or the lack of understanding and awareness among disabled people, it's about the living will of an extraordinary man. It proves that if there is a will anything is possible. No matter what he couldn't do his will allowed him to do what he can do. It was his will that allowed him to achieve his dreams.

Enjoy the video.

Put Yourself Out There

I am quite sure there are a lot of disabled people, not just people with cerebral palsy, who are very self cautous to the point that they doubt their owe confidence. Depending on the severity of their disability would most likely determine their level of self caution and/or self confidennce. Ultimately, people with cerebral palsy who are speech impeded, or people with just plain speech impediments would experience this obsticle.

I target the cerebral palsy community because of the uniqeness of this type of disability. Cerebral palsy is one of the most misconceived disabilities in the world. We can be so intellagent yet look just completely the oposite. The problem is we know it. Because we know about how society can easily misuderstand our disability a lot of us unintemtionally become isolated. We don't go out in public. I have had that problem since I went into the wheelchair and also when my speech impediment became more pronounced. The problem can add up for those of us who are more dependent on assistant from a caretaker. I didn't learn this until after I was divorced and/or had to hire a caretaker outside the family. The thing we need to remember, caretakers have their own lives and are not there like your wife, husband, or family would be in terms of socialization.

Don't get get me wrong, there are caretakers that are more compassionate and understanding about the importance of compaionship and socializing. Like getting out, maybe going a movie, going a resturant, or simply just going to a park. Anything where there people, where you can interact with people. There are people out who would be a friend or even help you with an order or with something out of reach. I know it is hard, believe me I do. I have had so many times that I talked myself out of doing thing I can do. Once I finally did go to the doctor my myself, to the store by myself, even to star bucks for a tea where you have to interact, it wasn't that bad at all. It even made me feel better, bubbly, and a little more confident. But I always make the mistake by falling back into the old habit. So, if we keep putting this off it will get harder and harder as we get older. Then we might develop anthropophobia and/or agoraphobia.

This is on us. We have to make it happen. If we want people to be more aware of us we need to put our selves out there. Whether its for love, friendship, goin to the doctor, to a resturant, to starbucks, or simply just to meet people at a park, we need to depend on only us to make that push. Sure, we can ask our caretaker, but don't rely on them to remind you of your plan. I say this because we might talk ourselves out of it leaving our caretaker feeling frustrated. So we have to take charge. In other words, “Put Yourself Out There”.

You Snooze, You Loose

We all have dreams. We all have things we hope to achieve. We want to do better. We want to be batter. We want to keep ourselves from getting worse. But somehow, in some way, we wait, we talk ourselves into doing just the opposite. We are lazy, some may call it. We are afraid in some way or another. We may let our minds play tricks on us to think its too hard or overwhelming. We say, “ i'll do it later”, “ i'll do it tomarrow”. We are procrastinating. And I am guilty as charged..

I was the worse procrastinator and sometimes I still do it. I do it out of lazyness and fear. Like exercising or something that i've worked for a long time and i'm closse to the end goal. Many are afraid of change, or something new. Sometime it's fear of rejection or lost. I know I can lazy but I think it's more of fear to why I procrastinate. Finishing a book and remembering to exercise is a lot of times overwhelming. I also procrasinate over thing need to do that I don't like to do, like: exercising, going to the doctor or dentist.

See, if you wait or put something off those thing will never get done. It's simple as that. I personally have a lot of things I want to do and things I need to do. I have books I want to finish. I have exerises I need to do. I have things I want want do around my house. I have little thigs I need to do that are apart of a big goal/project with looming deadlines. The bad thing is is you know you are putting these things off, at least I know I know what i'm doing. It's always in your concious.

Ok, now, i'm going to give you a very personal example related to my cerebral palsy and the need to exercise. When I was born and after the doctors figured out I had cerebral palsy, the physical tharapist pointed out that I had certain muscle patterns I need to break. So, the physical tharapist worked with me and my mom worked with me every day at home. All that work paid off. I was walking, riding bikes, climbing trees, and basically running amuck. Where am I going with this? Well, when I started having trouble walking at age 16 my mom pointed out that my body was going back to my old muscle paterns when I was a baby. While going to doctors and waiting around to see what was going on my cerebral palsy became more pronounced. I just waited instead of working with myself. Now, I cant even stand up on my own. There were countless times when I started exercising and I could feel myself getting stronger but a few weeks into exercising I resorted to putting it off. So learn from my example or your exercises will get harder as you get older.

We need to clamp down and take charge. It's the only way we will bring about change, and also get things done. If you don't take control of your life, procrastination will control It for you. As the famously say “You Snooze, You Loose”.