Our FAScinating Journey: Keys to Brain Potential Along the Path of Prenatal Brain Injury

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Jodee Kulp's workshops, books, keynotes, and educational materials have been well received in a board base of communities. She has an international reputation as an expert in FASD (Fetal Alcohol Spectrum Disorder) to help families help their children with FASD and professionals understand more deeply the child, their needs and the family's needs. Beyond her ability to speak and write about issues related to FASD, she has campaigned tirelessly to advocate for children born with FASD and for the families who care for them.

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Later Snuggled together on the sofa, Liz, Dave, Karl and I quietly watched a movie on New Years Eve 2001. We had come so far! Thank God, we had been given a diagnosis. Recognition of Fetal Alcohol Spectrum Disorder (FASD) was the key to open the door that had been locking Liz s life. My entrepreneurial business spirit flourished in the chaos of FASD fragmented knowledge. Our FAE diagnosis was the clue that told us we were dealing with brain injury. If we had been wiser we could have seen the flashing red lights and sirens along the way failure-to-thrive, SID (sensory integration disorder), dietary issues, ADHD, LD, motor planning, language, visual and auditory processing problems each had pointed to neurological dysorganization. Today, we know Liz s organic neurological-based developmental disabilities will probably require a continuum of services throughout her lifespan changing as she changes. We also know her brain could be rewired; we were watching it happen. Karl, Liz and I had rolled up our sleeves "to be the best we could be." We began by enhancing Liz s biological systems in the same order she was created following the blueprint our Father still held in his hands. We studied how the body and brain work to discover how to teach Liz. Karl and I determined to love her unconditionally and understand her neuro dysorganization. We provided Liz with nutrition that her body could process and supplemented lacking nutrients, especially nutrients to her brain and circulatory system. We became creative with the foods she processed well and were loaded with healthy brain nutrients. We learned to grind grains and make our own breads and pastas with things we had never heard of nor tasted before. We modified our uses of caffeine, salt and sugars, avoiding corn syrup and substituting maple syrup, honey and succant. We avoided hydrogenated oils and replaced our oil consumption with oils made from flax seed, grape seed, nuts and olives.

Once Liz s body was more balanced we moved on to increasing her short-term memory and auditory processing capabilities. We worked on normalizing her central nervous system her reflexes and sensory nerves. We went back to fetal and early child development. When she no longer dealt with over-stimulation and disruptive chaos, we added visual processing. We focused on developing learning processes before we tackled academics. With that groundwork in place, we utilized the information gained by her qEEG (brainwave data) for accessing additional learning and neurological balance through neurofeedback (brain training, focus and concentration), neurodevelopment (nerve and central nervous system training), physical education (recreation, sequencing and motor planning), social skills (life experiences, emotionality) and academics (ways of learning, learning styles). We developed a brain-friendly learning environment for Liz a brain training camp. We learned to empower her brain before we expected performance. We kept our environment and structure stable. Our school day began at 8:30 am and ended at noon. We focused on life skills: communication, socialization, recreation and productivity. We continued with school through the summer by shortening the academic day to one hour plus therapy and increasing structured socialization and recreation. Like a revolving spiral we continued to layer tiny piece upon tiny piece, trying to follow a developmental sequential pattern.

We asked questions and found answers. We asked questions that still have no answers. We laughed and played and danced and sang. We jumped and stomped and screamed and cried. We tried and failed. We tried and succeeded. Liz s antics had opened the hearts and minds of the public to the realities of prenatal exposure to alcohol. She was now a role model and hero, and though she held the title, Liz still struggled daily with the results of having been exposed to alcohol as a tiny developing human being. Liz s book had been printed three times. She had received letters from around the world thanking her for writing The Best I Can Be: Living with Fetal Alcohol Syndrome/Effects written when she was thirteen-years-old. Her book s success triggered this book to further help families and professionals. Liz was honored as the Adopted Child of the Year by the Minnesota Foster Care Association and she received her Girl Scout Silver Award for her FASD efforts. She passed out hundreds of FASknots on International FASday and shared that she had FAE with the unsuspecting public. She joined me in speaking and attending adult FASD meetings. She asked and was accepted as an advisory board member for the 4-State FAS Consortium. Liz, Dave and I had traveled to New York City to encourage pregnant moms not to drink via national television. FASD young people had been encouraged. Parents had new ideas and hope for their children. Liz s sincere girlfriends embraced her FASD issues and she performed with them in her hip-hop & rap group mo Angels. She had received the Tiger Woods Target Start Something Scholarship to further FASD public relations efforts. We no longer felt alone in the middle of this FASlane. We had met FASD families on the internet from around the world. Each had allowed our family a better perspective on FASD. We could now penetrate the murk and understand the reality of parenting Liz. Because of online support, we were given a reality-based perspective to which we could add our love, experience, education, and tenacity. Because of that Liz, at age 15, had a chance most other kids with prenatal brain damage haven t had.

We have been asked what made the difference for Liz? Was there a sequential order that could be duplicated? Karl, Liz and I cannot give you answers for the person you love with prenatal brain injury. Every person is different. We can, however, share with you our journey. It is a journey of hope.