RSS

Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 5 of Series)

24 Jun

Bullying

Of course there was torment and bullying.  Who hasn’t been bullied? There are different degrees of bullying. I’m happy to see this has media attention, and more severe consequences.   Teens sprayed hair spray in the gym locker room into her face and lit a match.  Is mainstreaming really effective?  Homeschooling a better option?  Tutoring beneficial? How can we really prepare children with special needs?  Do all special needs children get the same?  How do we protect these children when mainstreamed? That will be another post.

Learned to walk from the little red chair like this!

Loved reading books (still does). Learned to walk from the little red chair like this! Loves life! Happiness is from within her, not around her.

Excellent friendships

She played softball.  Albeit, she was catcher and the empire picked up the ball for her.  Regardless, she was embraced by the number one team and those young teens accepted her for who she was.

We will never forget these mature young women who embraced her with enthusiasm as they understood more than adults.  There were other friendships along the way.  Some users, some abusers, and some honest and trustworthy friendships.

At one point she was engaged to be married to a registered nurse.  Wedding plans were under way, but finding that lack-of-understanding and lack-of-compassion and taking advantage of a vulnerable young woman were far too much for her mind to endure.

She had the strength to cancel the wedding without asking anyone.  We were all shocked.  She never talked about problems.  It was solely her decision.  The only thing we requested was to return the diamond engagement ring.  She did not personally do that, but we as parents made sure it was delivered in person.

Even though we remained shocked, we always told our adult children that if they ever change their minds regarding marriage plans … they can walk away regardless of any financial debts incurred because of wedding plans. Happiness is found within a person, not outside a person.

Teachers

We were fortunate that our daughter had some excellent teachers.  Her most memorable, and one who deserves many honors was her first grade teacher.  She spent every Sunday with me on the telephone reviewing the weeks assignments and how would could work with her.  This was a learning process for all of us.  Teachers have such an impact on our children.  As they invest time in these innocent little lives, they invest in the future.  Thankfully, teachers have been creative in the learning process.

First Grade is A Favorite Teacher! Everyone remembers their first grade teacher.

First Grade is A Favorite Teacher!
Everyone remembers their first grade teacher.

Many times they identify special needs and gifted children sooner then other disciplines.  Teachers are dynamic and loving role models. Everyone remembers there favorite teachers. Most can identify why they were “favorites”. What other occupation will spend 6-8 hours a day with your children?

Early routine – not walking?

Routine for my daughter began when we were told “she will never walk”.  Why would we tell others?  We wanted our daughter to be just like everyone else! That’s normal for parents.  All our friends babies were walking and crawling. We stood her up against furniture and quickly took pictures as though she were standing.  Her milestones were significantly delayed.

Questionable surgery

At one point we were told by an orthopedic surgeon she needed surgery for her hips and they would put her in a body cast for several months.  These surgeries would be ongoing as she continued to grow.  That is one thing we disagreed with and rejected having to put her through these surgeries.

The orthopedic surgeon became so frustrated that he asked me to leave the room.  The door was partially open.  I heard my daughter screaming (about 18 months old). I pushed open the door, and he was twisting her legs in usual positions without a diaper on.

This may have been a normal evaluation and assessment of her situation, but I was not prepared to hear my child screaming.  You can only imagine a child with a high sensitivity to pain.  This was long before her proper diagnosis.  I would suggest for any mother not to leave their child alone and have the physician explain what to anticipate.

This was the last time we visited this doctor, but I never forgot the name.  It was hard to imagine what a child’s life would be like in a body cast for at least 50% of her life until she was about 12 years old.

We are happy we never went this route.  I don’t think surgery would have ever helped.  Surgery does not help seizures.  Surgery causes many additional problems.  Surgery doesn’t correct cerebral palsy but it does correct some problems with cerebral palsy.  Surgery is not always the answer!

I took her to the YWCA every morning for swimming.  She wasn’t given physical therapy, because after all no one diagnosed her problems because they didn’t have the insight or records that could help her with treatment in her life.

Medical records exposed

It wasn’t until her 20s we had her medical records in hand.  She was “cyanotic” (lack of oxygen to the brain) in the nursery.  With this knowledge, she would have been entitled to physical and occupation therapy among other interventions.  This would have helped with gross and fine motor coordination.  Something she still deals with daily.

Knowing how to help would have relieved an enormous amount of stress over the years.  It should be the responsibility of all healthcare professionals to disclose their findings openly so proper treatment and diagnosis happens, instead of covering for other issues.  It is the patients rights and families right to receive proper information.

This is a great injustice to families when they send their loved ones home (infants, toddlers, children, teens, adults, or elderly!) with out information and knowing complications may arise short or long-term.

Why laughter and humor … lacking education and compassion

Laughter and humor are important to deal with crazy things we do daily.  Without laughter, this is difficult injury and depression may become deep, dark, and unexplainable for the individual and families.  Unless, you’ve been there you don’t understand.  Everyone needs to laugh and a smile is contagious.

Some people may have simple memory lapses, but they get overwhelmed and frustrated quickly.  Those with TBI and other brain dysfunctions can’t grasp what “the big deal is all about”.  If you point out “this is an every day occurrence” and minimize the situation the reply you may receive in an angry tone may be “you have a reason”!  Yes, there is a reason … but another’s lack of education, compassion, and understanding is no excuse.

When you emphasize what it is like forgetting hundreds to thousands of times a day … your problem is also minimized and the focus shifts to their one time experience or a few experiences.  That’s another entire issue, but it doesn’t belong to you.  Don’t own another’s problem.

**********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. 

 

Tags: , , , , , ,

5 responses to “Loving and living with someone when they have Cerebral Palsy, Seizures, and Brain Dysfunction (Part 5 of Series)

  1. Tanveer Rauf

    June 24, 2013 at 2:03 am

    how are you dear friend. its been so long to read anything 🙂 I hope all is well. I was waiting an article form you:) stay blessed

     
    • brain injury self rehabilitation (BISR)

      August 30, 2013 at 4:29 am

      I apologize for not answering sooner. It’s been an overwhelming summer, but life is good. It’s hard to reply when I haven’t been on line. I plan to get back to writing and reading. My plans changed, we took a much needed vacation, had a great time, but that became eventful but things are settling down and we’re trying to get back to some sense of normalcy! I am blessed. How are you doing?

       
      • Tanveer Rauf

        September 1, 2013 at 1:38 am

        Good day dear friend:) glad to see your reply. i was also indisposed and moreover my computer crashed so was out on this internet land for very long. now i’m back like you and hopefully will continue living and breathing with our internet land friends:) God bless you and your loved ones. thanks for being there

         
  2. brokenbrilliant

    June 29, 2013 at 6:51 pm

    Wow – quite a post. Very moving.

    The one thing I will say is that you’re not kidding about the memory stuff. When you learn to live with that, day in and day out, it becomes less of a big deal. I notice that with my friends who get bent out of shape when they can’t remember things. With me, I just keep moving until I remember… or figure out a way to have the forgetting not matter so much.

    It’s all progress. Stay strong.

     
    • brain injury self rehabilitation (BISR)

      August 30, 2013 at 4:39 am

      It’s amazing when you watch others become so disturbed over the simplest things in life … it is almost entertaining because when you deal with it all day, every day it’s a part of life! Aren’t we finding that those who function within “norm” daily can’t deal with the simplest detours in life? It’s like “road rage” because they are pissed off, instead of “road rage” because we are overwhelmed with stimuli and daily problems! Very different reasons for reactions and actions. Take care and stay safe.

       

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: