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Christmas 2001 my wife Dayle and I were plunged into a parent’s worst nightmare – a car accident resulting in our teenage child’s traumatic brain injury. After a month long coma Bart gradually emerged with crippling cognitive, emotional and physical deficits. Eight months of grueling therapies and the school district agrees with the hospital – Bart is not ready to return to class, and would be best served by placement in an institution. We railed against warehousing our 17 year old son in a convalescent home, and fought to win Bart a chance to struggle, heal and progress.
We were determined to keep the bar up, set difficult but attainable goals; then raised the bar again and again. Who knows for sure how far anybody can go? It takes a little faith. These officials were not mean spirited so much as driven by economics and statistical models of probable outcomes without taking into account the character of the boy or his family. We began exploring unconventional therapies.
Faced with the chaos of ‘alternative therapies,’ and painfully aware that a false step might risk further injury to Bart, we were staggered. How could we determine which approaches were safe and held real promise? Separating the wheat from the chaff seemed near impossible. Should we accept the doctors’ verdict and wait, hope and pray for the best?
Dayle and I slowly cobbled together an unofficial ‘medical board’ of trusted physicians. ‘Members’ didn’t know each other or that they served on a ‘board.’ With each promising remedy, we’d ask the docs whether it might do any harm. Some exciting approaches failed this test. Those that got a clean bill of health, moved to the next stage for further investigation. We tried several – some were useless. Others like Hyperbaric Oxygen, Craniosachral Therapy, Boyle’s Sensory Learning Therapy, Novavision’s Vision Restoration Therapy, and supplementation along the lines of Dr. Permutter’s Brainrecovery.com were remarkably successful, gradually transforming Bart’s life. Successes were anecdotal, but a neuropsych examiner years later reported hardly ever seeing such improvement in one so severely injured. TBI is a life-long condition, so we rely on this method to this day. Bart will soon be starting neurofeedback. No money-back guarantees.
Today, with high school and even a semester of college under his belt, and a couple of years cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own place, with, new friends and moving forward with his life. How different the outcome had we heeded the advice of well-meaning busy bureaucrats. If there is one universal truth about TBI – it is that our loved ones who are injured need strong advocates in order to navigate mind-boggling challenges.
For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Best practices of conventional medicine only takes one so far, often ending at the nursing home door or, heavily medicated at home, facing long empty hours, and overwhelming families.
Not everyone has access to such a team of medical experts, but your family physician, nurse practitioner, public health officer or neurosurgeon are good places to start. Families, exhausted by the daily scramble to cope, hardly need the additional burden of ferreting out alternative therapies. Exchanging information and results among the wider fellowship of TBI should help. What’s needed is an emerging grass-roots movement, similar to Autism Speaks.
We’re not cheerleaders for particular therapies – more advocates of a persistent search for emerging alternatives. Therapies that worked for Bart may not be suitable for everyone. Nothing is 100% safe and effective, not even aspirin. Bart still struggles with diminished short-term memory, fine motor and impulse control. Psychologically our bags are always packed.
Our mission is to send a message of hope to survivors and families: more complete recoveries may be possible through use of safe, affordable unconventional therapies.
Joel Goldstein, author of No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury, Potomac Books, has written about TBI for Exceptional Parent magazine, Brainline.org and Adoption Today. He can be reached at www.tbibook.com and on Facebook, or at email@example.com
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Thanks for the hope this article give us all. Several years ago my husband had a TBI from a tractor running over him. They too wanted him taken care of in an institution, but we took his care on ourselves, not knowing the battle ahead.
Rehabs are just too short for something like brain injury. And they should be warranted for no other reason than to keep someone from slipping downhill. And besides, alternative therapies should be available to all! My complaints are many. Finances should not prevent someone from having the best of care! (my personal beef)
Sorry to hear of your husband’s troubles. Have you checked with your state’s BIA? They often know of discounted services. HBOT, which helped our son trememdously (but was considered a waste of time and money 11 years ago), is probably poised to become standard of care in the USA in next year or two. This because the VA is conducting widescale treatment of wounded warriors at the DeBakey Houston facility. Neurofeedback, which we are about to start this week, is also increasingly meeting with acceptance.
Best of luck, God bless you and your husband. your brother in TBI, Joel
Glad you fought to keep your son out of a home and so proud of where he is and how far he has made it!! What hope he brings others!!! Amazing! Lots of love! ~Micah
Thank yo so much for your kind words, love and support. The idea is to inspire each other to never give up. God bless us all.
Very encouraging. My 9 year old suffered a TBI in 2011. Just when I was starting to get discouraged this has ignited a fire in me:) The absolute most difficult part is getting the school to realize he is not like everyone else. There are no resources to help guide you when it comes to school!
Slow and steady…never give u p. We just started a new therapy a couple months ago…neurofeedback..great for cognition and impulse control. We were lucky with the school…a professor of special ed at nearby college went to bat for us. It is a trial that’s for sure. Your child will make lot of progress, though it takes time and persistence. God bless you and your family.