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Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 3 of Series)

10 Jun

Brain injury, intelligence, rigidity, moving

She is intelligent and has developed many ways to compensate by using the computer.  Her physical activity is limited, but others may perceive it as “laziness” or “spoiled”.   Honestly, sometimes I do to!  She may be spoiled with love and compassion, but she needs structure.

Structure right now is difficult as we’ve been moving for the past year.  Nothing happens fast with brain injury, especially when you are the caregiver, spouse, mother, professional and survivor. Besides packing up, selling a home, changing to excellent healthcare professionals, looking for housing for our daughter, seeking communities to help her remain independent, and not shatter her existence … it’s a fragile state of affairs.

Everyone is beautiful.

Like flowers … Everyone is beautiful.

Through this process, I’m finding talents and abilities I’ve never explored.  I’ve created an immense sense of design since my treatment with a vastly improved endurance and physical strength.  I’m blessed!  Miracles do happen, and they have happened given the proper medical treatment!

Our disorganization creates havoc in someone who doesn’t have flexibility.  She’s always been rigid, and it just doesn’t change for her regardless of all the attempts we have made.  I’ve found by my personal injury that flexibility creates instability in the minds of brain injury.  I know … I’m there!  I still have so much more flexibility than her.  Of course again, I knew flexibility for 38 years!  You don’t know what rigid is, until you live with it!

Is it rigidity or structure?  Think about this.  Does rigidity occur as a result of cerebral palsy?  Is structure so strong because that is the level that functioning occurs that it overlaps into rigid behaviors?  When we have a change in plans we never tell her ahead of time, because we simply can’t.  Every time it will lead to catastrophic reactions, and you learn to avoid whatever you can.

Computers are part of her success and winning ways

Through the computer she finds ways to “win” small things and delights receiving packages daily. Winning is fun and it promotes a level of accomplishment.  It may not be what others think rewarding, but for her it is!  Life is different for everyone.  Why can’t we accept people for who they are, instead of who we think they should be?  This makes it even more difficult for parents during every phase of life.  The problem doesn’t change, so we need to change our attitudes.

She takes criticism from others even as an adult.  She becomes involved in problems as though they were all hers.  She cannot discriminate from her problems and others. Her level of anxiety is out-of-reach partly owing to genetics that my husband owns, partly life events that happens, mostly brain dysfunction and finally people who lack understanding.  I just can’t imagine my brain going “on the fritz” like that.  

How do you handle situations like this?

Before this at an earlier hospitalization, she needed help turning on the shower faucets.  Simple things that others take for granted.  Common sense does not happen.  Training the brain is very different from a later injury to the brain.

These simple things have always been a problem and are ongoing.  Problem solving does not happen for whatever reason the brain does not make that connection.  Most of us take these things for granted.  Here are just a couple simple things that the brain cannot problem solve are ongoing throughout life: lacing up shoes (tying shoes is okay), buttoning clothing if different from buttons on a shirt,  turning on faucets … a changed environment causing chaos and everything is unfamiliar.

We don’t know why the brain doesn’t learn and retain these things, but we know she is intelligent and compensates in other ways. She learned as a teen that nutrition was vital to her best health.  She knows that prepared food is not healthy and she eats nearly all organic foods and always has.  She knows what she can control, she will.  Nutrition is one of these things.

Abusive parents

Believe me, abusive parents don’t take their children to hospitals for treatment.  If they do, they have instilled such fear that repercussions are severe and children will not speak up.

Parents with higher tolerances

Many great parents don’t take their children to healthcare facilities or seek professional help simply because their perception of illness or injury is different or their tolerance is much higher.  Healthcare does not tolerate or understand this.

Structure and routine for children & adults with brain injury

She needs ongoing routine.  Sometimes others need to structure her life.  Others are not trying to control her, but control the things they need to help her function at her highest level of functioning.  I’m sharing this because many parents are enduring these very same issues and others are not understanding and helpful.

Apply for services while they are young even if you don’t use them

In our case she was not diagnosed early, but if you have a child that qualifies for services … apply for them.  This will make it easier as time goes by, and the need exists.  As a parent you will then have resource personnel available to help work through different things throughout life.

Kimberly-SafetyTown-1978

The traffic is heavier, lines longer, and life becomes more complicated … but this is when “the daughter” was accepted by everyone before impatience and lack of understanding about symptoms of cerebral palsy and brain injuries set in.

Our daughter was entitled to continuing education after high school.  The catch here was:  she couldn’t graduate and receive her diploma like her peers.  She perceived this as “failure” and nothing could change her mind.  Because she received her diploma she did not qualify for vocational education.  I hope our system has changed since then, but most 17 and 18 year old teens want to remain with their peers.  Who doesn’t want to graduate or receive their diplomas when they earned them?

Adults with special needs will be the first cut in employment when downsizing or at least they will use something as an excuse.  The ADA laws protect somewhat, but there are always loopholes.  This is also common with ADD and ADHD.  No one understands it, no one wants to take the time, no one wants to help others … it’s just hurry, hurry, hurry.  There are too many things that aren’t cost-effective.  Taking time is never cost-effective when it relates to optimal level of functioning, but I’m here to say it is ALWAYS cost-effective.  What price would you put on your health or your life?

If children are given special attention for all special needs, we’d have 100% productive adults! Fight for the children’s rights, they are entitled to life without labels, without discrimination, and with love and support.

**********All material presented on Brain Injury Self Rehabilitation (BISR) is copyright and cannot be, copied, reproduced, or distributed in any way without the express, written consent of Edith E. Flickinger, BSN RN. 

 

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3 responses to “Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 3 of Series)

  1. WilderSoul

    June 18, 2013 at 3:54 am

    That is so well written, Edie! It raises awareness for those who are unfamiliar with the effects of brain injury, as well as providing much reassurance for those who experience it firsthand. Thanks for this – I really needed to read it tonight! 🙂 Your supportive words reach far across the world!

     
    • brain injury self rehabilitation (BISR)

      August 30, 2013 at 4:31 am

      Thank you for your positive feedback. I apologize for the delay in response, but will be back on board soon as I feel I missed so much but will catch up! Take care and stay safe.

       
      • WilderSoul

        August 30, 2013 at 4:39 am

        Wishing you all the very best Edie. Hope your day is filled with ‘walk in the park’ moments! 🙂

         

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