My Cerebral Palsy ignorance

Having grown up and missed all my developmental delays that other children will have reached,  it is only now that I have really come to understand; why I missed out on mine.

I needed the help so I could function in my life. I was never equipped. I believe this is responsible and contributes to the overwhelming feelings I get when it comes to me dealing with other aspects of my life.

Doctors originally diagnosed me at the age of two and a half, so certain family members will have known my diagnosis. I grew up in ignorance, so family didn’t have to deal with it. The only time anything was ever brought up was when I broached the subject, then it was quickly dismissed as if the problem didn’t exist. It would go on to take me many years to find out.

Going for walks was my biggest bugbear. Having my father stand behind me. Not being able to pick my foot up, dragging it constantly when I walked, not being able to hold on to open toed sandals that were clearly inappropriate shoes for me to wear, constantly being told to pick my leg up and to stop dragging my foot is still something I remember. It was the bane of my life.

Had my family taken the time to understand my presenting issues, they will have known I couldn’t do what they were asking me to do. Being ignorant because we don’t understand is acceptable. Ignorance because we don’t want to know isn’t. Not taking the time to help me work through what I had to deal with, is something I will never comprehend.

Questions were never asked as to why any of my developmental delays were there or why I struggled in the way I did. To this day I find it totally incomprehensible. Some days I find the notion difficult, other days I find it completely overwhelming.


21 Aug, 2015

12 thoughts on “My Cerebral Palsy ignorance

  1. While reading this blog, I found myself thinking about how you continue to triumph amid your painful memories. You consistently speak the language of a survivor. Through blogs like this, you have devised a healthy way for others to reconcile and navigate life’s complexities.

    So when your painful memories start roaring back into existence, be mindful that you are a gift that evolved from your experiences; perhaps that was the universal plan from the beginning.

    1. Awww thanks Tim. Looking back I believe now this is what I was destined to do, but would never have initially thought this is something I would have ever done.

      It’s lovely to think that my blogs inspire others to reconcile and navigate their own lives. If only one person were to benefit, what I have done will have been worthwhile.

  2. Yes, I’m sure it would have helped you so much to know about your condition, rather than everybody trying to ignore it and hoping it would go away!

    Back in the time we grew up, I don’t there was really as much awareness as there is now, where a child would have gotten the treatment they needed once it was picked up in school. Families had that code of silence where if they didn’t talk about it that it didn’t exist.

    Parents seemed to have the notion that if something was wrong with the child, there was something wrong with them and God forbid anyone talks about the elephant in the living room!

    My parents would never admit they had any issues, let alone admit their children had any serious issues like alcoholism or depression! It just boggles my mind that any parent would see their child struggle and choose not to do anything about it.

    It wasn’t fair and definitely wasn’t right, to put us through that, when there were things that could have been done to help us cope with our issues. I’m taking a class now that teaches life skills and it makes me realize how little I knew about actually being able to live like a normal human being.

    I’m sure you have the same mixed feelings about your parents as to why they did what they did. People say I shouldn’t feel that way about my parents, but they didn’t go through the hell that I did because I didn’t get the help I needed. All I ever seem to hear is, ‘they did the best they could with what they had,’ which I think is such a crock!

    It is so very hard not to think about what could have been, if only they had supported me like a good parent would have! I find that on a daily basis I have to struggle with letting go, which realistically is the only thing I can do, or continue letting it eat at my soul, which only hurts me!

    1. Thanks Randy. Yes same scenario, different problems for both of us, with no attention to our needs. As you say though, our experiences can either grind us down so that we become bitter and twisted, or our experiences can make us stronger.

      This doesn’t make what was done right, it’s just it is what it is; but it allows us to understand, if we allow ourselves to work it through to see emotionally where our families were and how they could have even thought this was acceptable.

      I agree what you say about the stigma of disability when you and I were growing up and that in all probability is partly responsible. You have come a long way with your understanding Randy.

      In effect it is our understanding that will allow us to move on if we’re happy to let it go. As you say in your last paragraph, we either let go or allow our experiences to eat at our soul, which will only hurt us more.

      Both of our lives are worth more. I would never let that happen.

  3. I agree completely with Tim. You had to go through those experiences to be able to get to the place you are at today.

    I’m pretty sure your site would not otherwise have happened, as your life’s experiences would have been so different. Your strength ensured you were able to endure the emotional pains your were exposed to because of the way you were treated and the ignorance that surrounded you.

    It wasn’t fair or right, but it made you able to do what you do today and that was and is your journey. We are all grateful for it.

    1. Thank you. I used to think a lot of things through as a child, so that side of my personality has never changed. I’m just writing my thoughts down through my blogs.

      I agree that had I have known as a child I probably wouldn’t have done The CP Diary, but not knowing made me even more determined to do something and yes couldn’t agree more. This is and will continue to my journey.

      It’s helping others too and I just love that.

      1. I was getting made fun of in elementary school when two boys saw my ‘run’ down the walkway. I never ran or will in front of anyone.

        In High school my art class was of course upstairs and one day three boys were asking me where I was going and when they realized I was walking like I do, they starting making fun. My dad was the security guard there and is a very tall bulky man so the boys didn’t get away with it for too long.

        Riding the school bus or any other bus and climbing those stairs and seeing strangers stare at me, it’s like ‘take a picture it lasts longer!’

        Now I can care less, but as a child and adolescent, it was torture.

        1. Thanks Bonnie. I must have slept through most of my childhood in that respect because I honestly can’t remember anything that happened!

          I have always been more aware of other people, because of how they approach and deal with me through what I deal with. I believe there is too much ignorance out there, not only from other people on what we deal with, but other people’s inability to ‘just let things be.’

          Disabled people are like everyone else, but they insist on making us different. Until that stigma is dropped and society comes to accept disability in its entirety, what you faced in school will continue.

          I believe it still does play its part in society.

          1. Thank you Ilana. I’ve learned to turn the other cheek and let things lie. In that sense I’m really glad you don’t recall bullying growing up for your sake. It was never fun of course.

            My daughter came home from school upset one day because there was a kid in her class telling her, her mom walks and moves funny.

            She was really mad and told the kid he was funny looking lol! But she was still upset by the time she got home and I told her people are going to say things and do things that are mean and have absolutely no control over them.

            Don’t let that kid upset you, he has no idea what it’s like and he was just impressing the other children in the class anyway. She seemed content with that.

  4. Thanks Bonnie. Yes turning the other cheek is something we teach ourselves in order not to get hurt. I have learned not to care what other people think.

    If someone is staring or making comments which are totally inappropriate, it’s important we don’t take what they say to heart. Comments hurt, particularly if we’re already struggling. It’s always hard when our own children are brought into the equation on something we deal with.

    Schools and institutions like school are often difficult, but how our children behave starts with the parents. I really do feel there must be more education around disability and more education on how to behave around people who deal with a disability.

    If there was, I’m not sure your daughter would have had to deal with comments made about you in school.

  5. I definently agree I wish they had an education system teaching about disabilities. I’m very happy to report that my middle schooler will start working with disabled students during school helping them get to and from their classes.

    She’s very excited to be with those kids and I’m so proud if her!!

    1. Such wonderful news Bonnie. I think helping anyone who deals with a disability puts a different slant on our lives.

      Being able to help and support disabled people is such a worthy thing to do. It’s incredibly satisfying that you know you’ve made a difference. Good luck to Katie.

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