Routine works best with brain injury. Most survivors place things in the same place all the time. Anything out of order, disrupts many aspects of life. Disruption affects everyone in the family when it creates loss-of-control. Disorganization creates chaos. This causes the brain to become cluttered and unable to sort through simple things. Some things are less bothersome than others. Every injury and brain dysfunction are different. Most are correctable issues.
I really never understood this until my injury. Throughout the years after my daughter’s birth with mild cerebral palsy and seizures our home needed to be organized beyond the routine organization. One thing misplaced would put her into crisis mode.
This organization and routine was already in place for many years when my injury occurred, making things much easier to adapt to in my life. I guess one might say if you were to be prepared like the Girl Scout slogan “Be prepared” I was prepared more than most people when brain injury happens. I just never thought it would happen. After all, I’ve had many injuries before and I recovered. Why would I ever think I wouldn’t recover?
Parenting a child with cerebral palsy … brain injury
I would have given anything to have my daughter have the experiences in life I had. Here I hope to highlight a few things being a parent of a child with “mild” brain injury, seizures, and cerebral palsy. A brain injury at birth is different from a traumatic brain injury later in life. A tribute to the years from 1973 and beyond!
Like other parents, we were and continue to proud of all her accomplishments. She has never been a disappointment as our child … with those few “normal” exceptions of parental frustrations of course!
She never had the “before” and “after” injury comparisons except the injuries she endured from severe falls because of motor coordination or seizures all related to birth injury. a parent, these injuries were questioned and “abuse” was assumed but not actually accused by some, but totally without merit … until the proper diagnosis.
Proper diagnosis took years, because of medical errors and poor judgement calls to withhold information from patients and families. This has since changed in the world renowned healthcare facilities nearby. They are now more apt to admit mistakes, and come forth with helping families. This is a significant positive change for healthcare and hopefully fewer families will be in turmoil over healthcare issues. Everyone makes mistakes, but it’s what isn’t revealed that is hurtful.
I would encourage anyone having difficulty with children falling frequently, behavioral and emotional problems, fine and motor coordination difficulties, cognitive and memory inconsistencies, and other issues to document them and see a child neurologist.
You will be assumed or accused of things without the proper treatment and diagnosis. It is not normal! It was her normal and others didn’t understand. If they understood her “normal”, her frequent falls and injuries would never have been questioned.
A “normal” for your infant, toddler, child, teen, and adult may be very different than what society considers “normal”. Everyone has a baseline of health, also considered “normal” for only that individual. Make sure you are clear if they are comparing “normals” to most people or that person’s “normal”.
Yes, it’s “normal” for a baby to cry. It can also be abnormal in duration and intensity. Yes, it’s “normal” to fall. Everyone falls. It’s not “normal” to fall several times a day, a week, a month, or even a year. Yes, it is “normal” to forget. It is not “normal” to forget several times an hour. It’s about perceptions. Most of us “blow it off” if we are told it is “normal”. You are your own best advocate. If you know it is not “normal”, pursue the problem until you get answers. Do your research.
Distorted perceptions or “normal”
As our teenager struggled to find a “normal” in her life, her perceptions were distorted. She knew she was different from most children. It was obvious in her educational years. She was never treated any differently and she was expected to meet all the expectations of all children.
Her teachers were excellent in school. She had specialized tutoring. She was a special child with needs different than others in her classrooms. Her positive demeanor, her smile, her sense of well-being, her confidence, overshadowed her struggles. What more could a parent ask?
She owns her own perceptions and we accept that. One summer day the police arrived at our door and we had no idea why. They asked if they could speak with our daughter who was washing the kitchen floor. We let them in as requested.
When perceptual experiences differ from “norm”, it makes for a confusing world. Most teens would not find washing the kitchen floor abusive. Obviously, she felt “washing the kitchen floor” as an abusive punishment. As parents, we thought it was a chore, but that was our perception.
While talking to an acquaintance she relayed this message to another teen who then called the authorities. These types of situations among teens are common. Two teens with different perceptual abilities. Who perceived it to be abusive doesn’t matter. It just shows how everyone has different thoughts and abilities and one responds to their perception. Certainly, we all know teens think very differently than adults and is a difficult time in their lives.
This ended as a positive experience from the authorities. They talked with her and told her “they wish they had a mother to wash her kitchen floor”. I think this conversation with an outsider of authority figure was impressive on her concrete thought processes.
Nervous system sensitivity
Screaming and crying that occurs as an infant, toddler, and child can become unbearable for families. I can’t even imagine the signals her little brain was providing her body. When the nervous system is disrupted there is not “normal” body functioning, and how can we understand what an infant or toddler endures when they don’t know anything else but a “chaotic” nervous system?
They perceive pain with a high sensitivity. Far different from one who has a high tolerance for pain. This was one thing I found difficult to understand until I believed that pain is “whatever the person says it is and no one should question another’s perceptual experiences”.
- Cerebral palsy symptoms – An overview (therapiesforautism.wordpress.com)
- Scientists warn against risking cerebral palsy stem cell treatment overseas (abc.net.au)
- Boy’s Stem Cells Successfully Treat Cerebral Palsy, Awaken Him From Vegetative State (medicaldaily.com)
- Know about cerebral palsy and Down syndrome (therapiesforautism.wordpress.com)
- First successful treatment of pediatric cerebral palsy with autologous cord blood (eurekalert.org)
**********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.