Healthcare based on education, experience (personal or professional?), perception
A couple examples of how healthcare professionals have responded are quite ignorant. They should be educated, but accusations with children are common and blame parents rather than proper diagnosis and treatment. These accusations follow forever.
Many children die because they are not properly treated medically. Medical documentation whether accurate or not is passed on from provider to provider. You cannot change false accusations. The most you can hope for is an honest healthcare professional and there are some! It’s hard finding one who thinks independently and does not fear repercussions.
When she would fall and became injured we took her to the hospital. Why wouldn’t we?
When she couldn’t crawl or walk we were asked “do you lock her in a room?” That was the last time we saw that Pediatrician! When she was hospitalized for seizures we were by her side most of the time. That’s what most parents would do.
That was also perceived as abusive. There is no even ground. You are damned if you do, and damned if you don’t. This is a biased system. This is also happening because healthcare professional simply don’t understand brain injury and they assume other things instead.
Education regarding brain injury should be extensive and prominent in all aspects of healthcare. It’s an injury many will sustain in their lifetime. Many will not have permanent sequelae, but if it happens they can compensate if they receive the proper help.
Once, we arrived at the hospital she was walking naked down the halls. She needed help with preparation to shower as this was a changed environment. She was a teen and no one understood “brain injury”, because if they did, this would not have happened. This type of thing could be interpreted as sexual abuse, but healthcare professionals need to look closer at the issues at hand.
From her parents eyes: Because she needed someone to assist her with showers doesn’t imply anything, except her inability to problem solve. Problem solving happens daily. Turning on faucets that are routine is not a problem, as learning has taken hold in the processing center of the brain. Breaking routine and learning how to turn on different faucets and think ahead to take clothing and towels are complex thoughts then we might believe. Every task in a day, takes considerate amount of thought. Confusion and disorientation is common when daily routine is disrupted.
We called our family physician and took her out AMA (Against Medical Advice). This is not abuse. This is brain injury. These infants, toddlers, children and adults need help when the environment changes. This is a dangerous situation that hospital staff are not prepared to understand and help in a much needed way. In this case, her processing system is broke and has never repaired.
What’s really broken is a system that fails to understand. She was in danger being exposed to others without privacy, without assistance, when it was needed. That’s where you expect help … but it’s not always there. The brain is not processing properly and others NEED to understand.
The broken processor
What do we do if the processor on our computers are broke? We throw them out and get new ones! Things are disposable, people are not! We continue to push and improve life, and correct all the things we can. For humans, the broken processors that have billions of neurons are correctable … somewhat. We just don’t know how much or when? We just deal with it. We live with it. We embrace it. We are who we are, and change all that we can.
This reminds me of the conversation after a school psychological evaluation for her at the age of 5. “She does not process information and I’ve never seen this before.” I did not know what that meant, but whatever it did we lived with and found ways to compensate.
He also stated “Her brain is like a tape recorder. She repeats what she hears. It’s not her own thoughts.” This has improved over the years and living independently promotes her optimal level of functioning where thoughts need to develop freely.
Otherwise, the brain focuses on simple things like most toddlers or young children focus. It’s difficult when one mimics your behaviors and thoughts. It’s the processor that’s broken. Albeit, difficult to differentiate from other genetic traits from which no one has control over. It’s still very hard when others say “she acts like a two-year old”. Once a parent, always a parent and you will always be sensitive to others thoughts and feelings.
A parent never wants their children to be ridiculed regardless of who or what they have become. Our daughter has become a very sensitive, intelligent, compassionate, loving, and caring person in her own right. We are proud of who she is. She is and she will continue to be … a heartwarming, hugging, heavenly, healthy, and happy person for she is making the most of her life and living by experience. She is not defined by things or status, but by her internal existence.
I feel as though the brain has developed far beyond the predicted and assumed “14 years of age”. People with cerebral palsy are intelligent. They learn strategies that work for them. She is the mother to a one-year-old miniature long-haired dachshund “Belle”. She loves her puppy and takes great care with her. The love is unconditional, something that is hard to find in a world when it seems so upside down.
- Boy’s stem cells successfully treat cerebral palsy (indiavision.com)
- Boy is the first to have cerebral palsy ‘successfully treated’ using stem cells, taking him from a vegetative state to walking and talking (dailymail.co.uk)
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