As a mother of an 18-year-old daughter in college and a 15-year old son, I’ve experienced during the course of my parenting life the sheer terror and pain of watching my beloved children suffer yet remaining helpless to assist them. Almost every mother I know has experienced the trauma of this, and many thousands of men and women who aren’t parents but have had children and young adults in their charge know what this feels like – to reach the point of complete desperation and despair because you’re powerless to ease the suffering of the one you love so dearly.
My friend Lynne Marino – a financial advisor for Merrill Lynch — shared just such an experience about her youngest son, Robert. But her story has a silver lining – one of courage, persistence and unflagging commitment to trust what she knew to be true, and find new ways to help her son, despite what the medical community wrote off as incurable. I’d like to share Lynne’s story, as inspiration for all of us who know better than the “experts” on what our bodies need, and who will not give up the fight to find new ways to help the ones we love.
Lynne’s story:
| “In August 2010, our youngest son, Robert, suffered his second third sports-related concussion. This one really rattled him. His high school football coach called us on a damp and rainy Saturday to instruct us to meet the ambulance at the hospital.At first, we kept him home from school, but boredom got the better of him and we had a hard time keeping him from attending school.Being denied sports until hockey season, Robert seemed to be doing “okay”. He was released from the doctor’s care briefly when hockey season started. Two months into the season Robert was truly suffering. He couldn’t focus on his schoolwork and had limited ability to prioritize his time. We returned to the neurologist who specialized in sports related Traumatic Brain Injuries (TBI). He diagnosed Robert as having “acquired” ADHD, as a result of his concussion.As instructed, we began a series of ADHD medications. Robert hated how he felt.It’s such torture to see your child suffer and feel powerless to help. I kept talking with other parents and was soon referred to Dr. Tepley, a Neuropsychologist. He performed a battery of tests on Robert and ultimately diagnosed him as having a “brain shear,” which severed a portion of connections in his brain.
Armed with this diagnosis, we implemented a plan for Robert at the high school, allowing him extra time to complete tests and assignments. Throughout this period, Robert continued to try different medications, but nothing helped. After Robert had completed his 1st semester of his senior year, I still wasn’t satisfied that we’d done everything we could do for him. I’d heard about a therapy called Neurofeedback. We attended an information session with 50 adults — most of whom suffered from TBIs due to accidents or war related injuries or ADD/ADHD. Robert was willing to try anything to get off the meds, that were wreaking havoc on his body and his mind. In a nutshell, it was a miracle. In 90 days Robert was “cured”. Neurofeedback (also called Neurotherapy or EEG Biofeedback) takes a measurement of your brain creating a baseline brain map. Once this is done, the therapist can identify the area of the brain that needs attention. The patient is connected with leads from the part of the brain needing attention to a box that runs a video game (yes, a video game). The object of the game is to have your brain make a car on a racetrack go as fast as possible. This exercises the part of the brain and “repairs” the damaged section. Robert did the video game for 30 minutes each day. Once a week, we’d see the therapist who’d download Robert’s homework and modify the game to make his brain work harder. After 90 days, he performed another brain map. The section of the brain that had been angry looking and red, was now a calm blue-green. He declared Robert “cured” — just prior to his high school graduation. Robert went off to college this past fall. He still had “extra time” on file with the college, but he has yet to need it. His last semester he did well in school and he is completely drug free and back to his old self. This experience enriched our lives because it taught us to:
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Lynne’s story reminds us that in parenting, as in life, we must remain vigilant and relentless in our pursuit to do what’s necessary to live our lives as we long to — fully, joyfully and healthfully — and to find the right kind of empowering support that will help us be all we wish to this world.
Have you faced a serious health problem in yourself or your child that demanded you to stretch far beyond yourself and traditional measures to find a new solution? I’d love to hear your story.
(For more information on the resources mentioned in this post, visit Smart Brain Tech, Gray Matters CT, Concussion Center CT, Lumosity Neuroscience, The Amen Clinics)
Thank you for this post, Kathy! When our daughter was 10, she suffered a serious concussion after accidentally walking into a large pole while looking in the other direction. I immediately took her to her pediatrician who did not think she had done any serious damage. However, the next few days showed that was not the case. Like Lynn Marino’s son, she could not concentrate nor remember anything said to her for longer than 5 minutes. Even more frightening, she began to have “rages” – out -of – control anger for no reason. The neurologist who examined her told us that this was irreversible and the new “normal”. We refused to accept that and I began intently looking for solutions. Someone at the natural foods grocery where we shopped mentioned Cranial-Sacral Therapy. I checked it out and found a highly- recommended chiropractor who practiced the technique. After many sessions (8-10 once a week), our daughter became her self again. I am extremely grateful for the person who pointed me in this direction and for having our daughter return to normal. You are right, Kathy. We must be our own best advocates for ourselves and our children.
Thank you so much for sharing your story, Sharon. It’s a beautiful one, of parents who wouldn’t accept the “new normal” diagnosis simply because the medical community told you you should. So happy to hear your daughter is herself again. Thanks so much.
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