Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 4 of Series)

17 Jun

Catastrophic reactions and safety issues

When she is in crisis, it’s nearly impossible to find peace and calm within the household.  It’s easy to cause a catastrophic reaction from her, as things escalate out-of-control when her brain does not process information.  Parents need to keep themselves safe with these catastrophic reactions.

We put key locks on my bedroom door so when behavior escalates I can separate myself into my own room for safety reasons of both.  The physical strength of a child or adult with injury seems so strong when a catastrophic reaction occurs.

When this involves only emotional outbursts, it’s more tolerable.  The physical strength is beyond comprehension, but I attribute it to the combination of emotional meltdown and physical outbursts that happens against the primary caregiver.  Primary caregiver is usually the mother.  It’s not a personal attack, it’s who usually available when these outbursts occur.

Through my experience I have learned things happen with all brain injuries, and safety should always be number one issue for everyone involved.  Don’t ever let anyone corner you.  If you can get the older child or adult between a door, you should close and lock it until things calm down.  You need space and separating you and the other person from physical harm.

Age 5 diagnosis mentally retarded or brain injury

First Day of School 5 year old with Cerebral Palsy ... Invisible Injury

First Day of School
5 year old with Cerebral Palsy … Invisible Injury

At the age of 5, we were told she was mentally retarded by her first teacher.  That was devastating, and we were sure she was wrong.  She was.

Parents deal with a lot when their children are not “normal” and rarely share with others because they think they are just “complaining” .  In reality, others don’t “understand” and won’t get “involved” because life is too busy to be compassionate even with children.

Eliminating environmental stimuli

Because of the necessity to eliminate all external stimuli the home was peacefully quiet beyond what I was familiar with being raised in a family of eight.

It seemed as though my spouse also needed this calm but we all have different experiences in life and I wouldn’t change anything as I know so many different levels simply by experience.   I was raised with clutter or maybe others would call it “hoarding”.

Routine and organization for your child with brain injury

Nonetheless, routine and organization has continued throughout her 40 years.  Because she does not have the obvious physical problems their has been little compassion from friends or relatives.  Again, it’s an invisible injury!  If it’s not seen it doesn’t exist! People are very concrete thinkers.  Of course there are a number of emotional and cognitive issues with brain injury but unless you have been there, few understand.

It’s about education.  Brain injury is not new, but for some reason education is lacking … or is it simply compassion, caring, understanding, and simply helping that’s lacking?  People are cruel and rude to these children as they grow.  They are not looking for sympathy.  Love and support go along way.

It’s not as though anyone is looking for empathy, it’s the education and understanding that is lacking.  Cerebral palsy is a brain injury.  As a young parent it would have been easier if she was diagnosed and treated properly.  Instead, the struggles continued until her teen years.  She didn’t know she was different.  Her struggles were obvious, but she was exposed to all the things other young children were.

Middle school – structure, environment, and stress changed

The real issue began when she entered middle school and she was falling down stairs and falling constantly at school.  They did not want to be responsible or accountable.  The problems did not change, the structure changed.

When she fell down stairs at home the parents were to blame.  Elementary school was on one floor.  With poor coordination no stairs made things easier.  Falls still happened frequently, both at school and home.

Satisfactory or good medical treatment or diagnosis

When she continued falling in middle school they called us to school telling us they believed it was a medical condition. With the proper physician, a pediatric neurologist it didn’t take long before she was finally diagnosed with seizures or epilepsy.  I advice everyone to get a specialist.  Your children’s lives are important.

This truly only happened after she ran a fever of 106 for a couple of days.  We were given some “lame” instructions to bring down her fever as though it wasn’t happening.  We finally took her to the emergency room when the entire scenario changed.

She was hospitalized for a couple weeks.  One physician gave us details of where to take her for good medical care.  We believed we were getting that otherwise we would have changed physicians.

We lacked insight into poor medical professionals, or did we trust too much?  We will never forget and will always be grateful to this doctor.  It only took one healthcare professional to tell us “If it were my child I would take her to …. Dr. IAmListening” and we did.

If you feel your family physician is not listening, you are probably right!  Fire the family physician, and get someone else.  Finally, she was successfully treated with anti-seizure medications and the seizures stopped.

**********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 4 of Series)

  1. behindthemaskofabuse

    June 17, 2013 at 12:08 am

    I hate that if you can’t see it, it doesn’t exist thing. No one would ever know to look at me that I have a disability, or epilepsy but I do. I know you know how this feels too!

    • brain injury self rehabilitation (BISR)

      August 30, 2013 at 4:34 am

      This demonstrates how superficial human race can be. Everyone is expected to fit the “mold” and everyone else is pushed aside. I wonder if they could just push a “delete” button on us, we would simply be “deleted”!LOL


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