Independence and Ability Levels...

Here are some questions in regards to the independence and ability levels of people with disabilities. Again, these are questions with highly subjective answers, but I'll do my best. This first question will be answered in two parts:

Ash - you are so independent. You live on your own, go to school, etc. What did your parents do that helped you be able to become independent?

My parents have never really treated me as though I have a disability. For as long as I can remember, my parents have pushed me to do things for myself...even if that meant spending hours trying umpteen different things, until I finally figured out how to do something for myself. For example, when I was first learning to dress myself at around age 7 or 8, I can remember my mother waking me up extra early on a school morning so I could do it myself. And eventually I got better and faster at it. The only thing I couldn't do for the longest time (no matter what I tried) was put my own shoes on...It was very difficult for me to get them on over my braces. So for years I would have to put everything else on and then call in one of my parents to help me with my shoes. I finally figured out how to do this for myself around the age of 12 or 13.

In regards to special treatment, there wasn't any...at least not at home. My mother often tells this story to people who ask her about my level of independence. When I was about 3, attended a special daycare at our local YMCA for children with disabilities (or was it the clinic in Toronto...I don't recall. That part of the story is a bit hazy). Because I was young and supposedly quite adorable (as most 3-4 year- olds are), I apparently had much of the staff there appealing to my every whim, no manners or politeness required (as I was 3, cute, and not to mention "special", so why should I say "please" or "thank you"?). I can't remember if a staff member eventually brought this to my mother's attention or not, that part of the story is a bit hazy too. At any rate, one day I had apparently tried to use this technique with my mother. I said something to the effect of "Get me a cookie" and my mother responded with the typical "What do you say?" But instead of saying please as I was supposed to, I said "Get me a cookie NOW!" That did NOT go over well with Mama. She proceeded to pick me up out of my chair, and put me to bed for the rest of the afternoon. I had to stay there until dinner. Tell me if that 3 year old is any different than every other demanding 3 year old on the planet...I wasn't...and I was dealt with accordingly.

Would you do the same for your child (with or without a disability)?

Absolutely. I am as independent as I am today because my of the way my parents handled me. Were there times that I hated them for making me spend hours and hours (most of this time spent crying and screaming in frustration and even pain at times) learning how to do for myself? Of course. And I'm sure it would have been MUCH easier and faster for my parents just to do things for me, but they understood very early on that doing everything for me might seem easier (and even smarter sometimes) in the moment, but that, in the end, it would be me who suffered the consequences. Though I have never been really close with my family, I am grateful that they allowed themselves to hurt in that moment, so that I would be better of later in life. So, in answer to your question...I absolutely plan on teaching my children (disabled or not) to be as independent as possible, as early as possible without compromising their safety. Though there are many things that I plan on doing differently from my parents, that is one aspect that I would like to carry on. I can't tell you the number of people with disabilities that I have seen who are adults and are still unable to complete even the simplest of tasks...Their inability to do these things has little or nothing to do with the disability itself, but because they grew up with parents that coddled them and treated them as if their disability was a life sentence of dependency, and thus, never bothered to teach their children to do anything for themselves.

The sad part is...I look at these people and I can see their potential...But after so many years of being coddled to, they have literally lost any desire for an independent life. Parents need to realize that, regardless of how much it hurts to watch your child struggle in that moment, these children NEED to struggle in order to develop any kind of self-confidence or self worth. If that does not happen, these children are robbed of their opportunity to reach their God-given potential.


Next...

What is the percentage of people with your type of disability who share your same level of ability (intellect, speech, physical, etc..)?

Honestly, I'm not sure if an actual number exists to answer this question. In my experience, ability level is very much dependent upon the circumstances surrounding the birth process (when the child is born, IE 24 or 26 weeks etc, amount of time the baby's brain has been without oxygen after birth) any setbacks that occur in the hospital (brain bleeds, infections, etc...) Cerebral Palsy, as I understand it, is defined as a developmental disability, not a physical disability. Of course, this does not mean that all people with CP are intellectually delayed, which is an entirely too common misconception. All it really means is that Cerebral Palsy occurs as a result of brain damage, occurring either at during the delivery process (I believe this is what happened in my case. I plan on asking my mother to talk to me in depth about that at some point), or some point shortly afterwards due to deprivation of oxygen to certain areas of the brain. The severity of the disability depends largely on where in the brain the damage has occurred, and how much damage is present. That is why some people with CP are extremely high functioning, so much so in some cases that it can be hard to detect aside from a few small factors (IE. slight limp, turned in feet) or extremely low functioning (inability to speak--this does not mean the person cannot communicate--, inability to use one or both arms, uses wheelchair, feeding tube, etc). As is the case with all disabilities, many people with CP will fall somewhere in the middle of this spectrum. Take me for example, I am almost completely independent (few exceptions remain largely due to my environment), I attend regular classes in college (full course load), I am active on my church's music team as a singer. However, I require the use of a wheelchair for mobility (though I can stand with assistance), leg braces (can't stand without them...I've tried it...not pretty...HA HA!), I tend to slur my speech when I get over-excited, and in uncomfortable situations, I tend to lose about 75% of the volume in my voice, my balance is pretty much non existent outside of my wheelchair (with a few exceptions)...and I'm spastic...very spastic. This is probably the one thing about my disability that I am the most aware and sensitive of. This is the one thing that, if I could, I would change it in a heartbeat. I basically can't do anything with my hands without my feet kicking straight out in front of me. It makes doing anything awkward and even embarrassing, but I do the best I can to ignore it, hoping others will follow my lead.

Those things aside I'm pretty "normal". I use quotes here because I really don't think "normal" is a concrete notion. In order for something to be concrete, it has to have a specific definition, and no one that I've ever met can truly define it. Therefore, as far as I'm concerned, there is no such thing as "normal". It doesn't exist.

Of course, if you were to ask my friends, they would be quick to tell you that if "normal" did exist, I am far from it...and trust me...that has absolutely NOTHING to do with my disability!