Today is World Stroke Day and one of the CHASA moms, Nadine Zimmermann, shares her story. We want to let the world know that on this day, there are babies and children who will have a stroke. We don’t know if that stroke could have been prevented and that’s because we don’t know what causes many of the strokes that occur in babies and children. We also don’t know the best treatments for after stroke care, although a handful of dedicated researchers are searching for answers. What we do know is that unlike adults who have strokes, most babies and children who have strokes will faces a lifetime – A LIFETIME – of therapy, possibly surgeries, early arthritis and pain, and challenges in learning and finding employment. Today, on World Stroke Day, please tell everyone you know that Kids Have Strokes, Too.
From Nadine Zimmerman:
Today is World Stroke Day. Except for the snafu in the wording in their logo saying “preventable”, it is a day for all stroke survivors and caregivers to come together. As a caregiver I can say that not only have I learned a lot, but so have friends, family, acquaintances around me. My son Ian and daughter Jadyn certainly have learned a lot. It was Jadyn that inadvertently taught Brandon his ABC’s, how to put shorts on, how to put a t-shirt on. It was Ian that never let Brandon fall over when he was unable to sit on his own and included him in everything he did. Ian and Jadyn have no tolerance for mean people and won’t let a mean person near their brother. Paul and I have learned incredible patience and teamwork. What works one day does not work the next. Working memory/short term memory/long term memory is a tricky thing. We learned about speed of processing and how to help Brandon’s.
You see the stroke took away so much that others take for granted. We learned about sensory integration problems and spent years in the house because the flickering fluorescent lights bothered him, scents/smells bothered him, sounds of hustling and bustling were too much to handle, food dyes set him off (think back 10 years ago when foods without dyes were much harder to find) just to name a few. We’ve sought out the best of the best to help Brandon. I’ve fired doctors and therapists who didn’t have hope or aura in their nature. I’ve worked with teachers, special ed aides, advocates trying to understand how Brandon learns and retains information and what legally the school must provide for him when he doesn’t fit in their box. And I fight and fight for what Brandon needs. Just a few weeks ago I yelled at a police officer who made funny faces and threw up his hands when Brandon almost walked in front of a moving car…the car was coming from his left side…he has no left lower quadrant peripheral vision.
I spent countless hours on the internet in search of anything I thought could help. I found CHASA (Children’s Hemiplegic and Stroke Association) and found hundreds of friends that I’ve never met, but we all speak the same language and instantly bonded. Purple is the color of Pediatric Stroke Awareness and it has become my favorite color. We’ve tried so many different kinds of helping/healing things…each helping in its own way (the traditional ones speech, physical, occupational, music…the not so traditional ones neurofeedback therapy, hippo therapy, sensory integration therapy, audio/visual/vestibular therapy, methylcobalamin B12 injections, chiropractic neurologist, no gluten/dairy, homeopathic allergy treatments for food/mold/pollen/toxins, and a million other things. Brandon’s accomplishments are never ordinary…they are extraordinary. I feel very blessed to have met all the amazing people that have helped Brandon in this life journey…and there are a lot!! I am so proud of the young man he is becoming. Brandon is truly the bravest and hardest working person I know.