Managing Cerebral Palsy

The more I read about Cerebral Palsy, the more I am disillusioned by the lack of support and necessary preparations that could have helped me grow up with the condition that I didn’t know I had.

Although my medical problems as a child weren’t complex in comparison to other children with Cerebral Palsy, it is clear the way my condition was handled, fell very short of the mark. It is important for any child born with Cerebral Palsy to have access to all treatments, resources, services and supports, required, just to be able to thrive in the world.

Managing Cerebral Palsy is the minimum factor that secures the basics for a child with Cerebral Palsy, to be able to cope inside and outside of the home. Security, stability, health, education, family, shelter and sustenance, provide the basic physiologic human needs for a child with special needs.

Below is a list that helps manage Cerebral Palsy:

  • A care plan must be put in place as soon as a Cerebral Palsy diagnosis has been made;
  • An Individual Education Plan must be set up and be prepared and for the parents to become their child’s advocate for any educational support they need;
  • Cerebral Palsy doesn’t just concern the Cerebral Palsy child. The whole family is affected; therefore it’s important the condition is addressed with all family members in mind. If handled correctly, the family should come to terms with and be okay with everything;
  • It’s important to make sure all appointments for hospital visits are planned and in the diary;
  • It’s important for the family to bond, therefore opportunities must be made to make sure that happens;
  • Cerebral Palsy isn’t just a physical problem. It’s important to emotionally continue to help your child;
  • Informed choices must be made about community support options;
  • A therapy timetable must be incorporated and daily reinforced at home in a conciliatory way so that your child is emotionally supported;
  • Dealing with any medical condition takes time and adjustment for all the family. To cope, it’s important to talk about your child’s condition to a family friend or counsellor. Anyone who is happy to listen and won’t stand in judgment;
  • Include proper nutrition, sleep and exercise as part of your daily routine;
  • Accept that dealing with a child with Cerebral Palsy means you may need help from time to time;
  • Looking after a child with Cerebral Palsy takes time and energy. Slow down so that you’re able to cope with all of the demands the condition brings;
  • Finally, the financial strain on families with a child with special needs is vast. It’s important to make sure a health insurance plan is in place to help with medical expenses.

Although my hospital and physical therapy appointments were met and exercises were incorporated into my daily routine, that’s where the rest of these similarities end.

8 Feb, 2016

4 thoughts on “Managing Cerebral Palsy

  1. It’s difficult coping with Cerebral Palsy as a child. It’s difficult to feel different from the other kids and more so, if we don’t get much support at home.

    As grown-ups, of course, it’s still not easy. I find if I don’t think about the fact that I have CP, it makes it easier for me to cope with.

    It gets tiring of always thinking about it. I just want to live my life like anyone else or as best as I can.

    1. Thanks Maria. Yes I completely understand. Cerebral Palsy will always be part of our scenario in one way or another. When we live and breath the condition every day, it’s very hard not to think about it.

      As you say in your last paragraph, we just want to live our lives like anyone else. We don’t want to be treated differently.

      We get to live our live differently of course, we can’t not with the condition, but to do that we have to be able to manage and that can be difficult without the right support.

  2. Wow great information Ilana! I sure wish you had the support you needed from your parents when you were growing up!

    My parents didn’t take us to doctors much, but they supported me in other ways. My daughter told me the other day not to lift a box, because I could hardly stand as it was. Made me feel good she’s supportive and only 12.

    1. Thanks Bonnie. I love that your daughter cares enough to watch out for you in a way that makes you feel good about yourself and what you deal with. Not all children do that, but perhaps they’re not shown that so it’s not all their fault.

      My parents, mum particularly was keen for us to be polite, but I don’t remember those kind of attributes being instilled in us. It certainly didn’t happen for me with what I dealt with.

      I’m not sure how much I could say I managed as a child around my physical issues, but for those who do have the support I hope these Cerebral Palsy tips help. I know they will have helped me.

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