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Living with autism
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Posted April 2, 2008
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Deerfield, Illinois
Deerfield, Illinois
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Autism Recovery - 12 Steps Out of Autism
Two Brothers' Inspirational Journey to Overcome Autism Shines a Light of Hope on Millions Two Boys, A Dream, A Village, A Nation Born in 1994, my first son's successful battle since birth leading to an almost complete reversal of his Autistic issues has proved him to be a leader for America and the world through his example and perseverance than I, his mother, could have ever envisioned. His younger brother, although affected somewhat differently as a baby and small child by Autism, has made such incredible progress that he has been placed in gifted classes after being labeled with learning disabilities, reversed serious physical challenges to now play on a basketball team, and was recently described by his teacher in a classroom of healthy kids as "a perfect example of what a friend should be" on his last report card. The premise of their lives is building a community of overcoming challenges. Others help them, and they helped others. Autism attacked both of my sons' brains and bodies leaving them with: * Extreme Sensory Issues * Speechless and Receptive Language Delays with no speech until age 5 * Eating Issues with problems digesting and eating most foods * Inability to be toilet trained until age 6 * Social deficits and trouble relating to people * Significantly more Infections and Illnesses than typical children * Severe Sleep Problems keeping them up at night until ages 9 and 5 respectively * Repetitive Thinking * Learning Difficulties and Differences in the way he learns * Gross & Fine Motor Delays * Focus and Attention issues My belief is that only due to intensive early interventions, complete open-mindedness and a determination to go to any length to help them become the best they could be, did we see significant improvement in the quality of their lives and for our entire family. The 12 Steps Out of Autism My 13 year old and 11 year old sons have learned to live a healthy, happy, productive, life by overcoming most of the issues that plagued them due to having Autism from birth. The 12 "life enhancing" steps that helped to maximize their potential and minimize their difficulties included: 1) Surrounding them with unconditional love and total empathy - knowing that "no child wants to be bad" or throw tantrums, repeat behaviors, wake up at night, or "misbehave" 2) Intensive Therapy - Speech, Occupational Therapy, Physical Therapy and Social Work 3) Reading 100's of books, dozens of educational seminars, and 1,000's of Google Searches 4) Medical Interventions - from 8 different states (IL, WI, CA, AZ, NV, MA, MD, PA) including Overnight EEGs & SPECT - critical for clear diagnosis 5) Medications - short trials of many types and doses until the right balance of a couple work best 6) Encouraging all talents and special abilities, using interests as a way to enhance learning 7) Prednisone - suppositories used for about 6 months as the catalyst for speech and getting other treatments to work effectively They both went from no words to speaking in full sentences in a few months!! 8) Schools - IEP's with significant accommodations, ensuring optimal success 9) Constantly educating - teachers, schools, parents and peers on potential issues, what to expect, and how to handle situations 10) Adaptive Technology like Computers - to aid learning, help expressive language and creativity 11) Remove regular milk products - and switch to organic milk products 12) Consistency - schedule at home and school for daily routines, and places for possessions A child with Autistic Spectrum Disorder requires complete patience as they beg for help from healthy parents and doctors to figure out what's wrong with their body and brain that causes them to feel and act abnormally, leaving them totally frustrated with their inability to communicate. Their "speechless" behaviors are screaming out, "Please fix my brain problem so I can be happy and healthy!" "The highest degree of +Giving +is helping others help themselves." (Maimonides) My older son's exemplary progress, along with his brother's recovery from similar challenges born 2 years later, was witnessed by our close, loving, immediate family, concerned extended family, sensitive circle of friends, nurturing babysitters, the involved, nationally renowned hometown of Deerfield, Illinois, rated the 3rd best place to raise a child in the U.S., therapists, counselors, nurses and doctors nationwide. We are especially grateful for their Grammie and Papa who are both Professional Counselors and directed their care, two longtime babysitters who have been inspired to attend college to become teachers, one in Special Education, and two students at Deerfield High School who volunteer for the Friendship Circle Foundation as mentors to my sons in our home for one and a half hours each week. Speechless Upon hearing that they each seemed to have "significant delays", I was in a state of shock after each 1 year check-up with the Pediatrician. Suspecting something was wrong after my answers to a series of typical questions he asked were not as expected, he handed me a list of phone numbers for the best local doctors and therapists to get them tested. I followed up immediately with evaluations by a speech therapist, occupational therapist, developmental therapist, social worker, psychiatrist, neurologist and audiologist within 3 months. Additional evaluations were done by PhD Psychologists, dietitians, nutritionists, gastroenterologists, urologists, music therapists, and TheraPlay experts over the next couple of years. The "shocking" diagnosis just past my oldest son's 1st birthday was: AUTISM or PDD/NOS and my younger son's 1st birthday way: AUTISM and later Aspergers Syndrome. Their miraculous improvement shines a light on the fascinating spectrum disorder of Autism that can be examined from many different perspectives. We are so appreciative of the loving, collaborative effort of so many people to support, educate, treat and encourage us along the way. We found after meeting so many families over the last 12 years that every case of autism is different. The variations in autism are a reflection of the range of genetic predisposition, environmental triggers, stress in the surroundings, understanding and sensitivity, early detection, extent and intensity of the interventions, personal experience, ability to provide a consistent, stable support system and empathetic experienced team for years, and an open-minded approach to trying medication, vitamins, therapies, exercises, confidence building techniques, and educational methods. One constant that remains true is that caregivers, professionals and family members supporting someone with autism are all offering sacred and cherished gifts on a daily basis. "Who is wise? He who learns from all people." (Ben Zoma, Pirke Avot 4:1) I was determined to maximize my sons' potentials, which has impacted my life in many ways (e.g. physical health, mental health, financially, relationships, etc.). However, I know in my heart that these tough years were a small sacrifice for a lifetime of significantly improved health, enhanced relationships, and productive life for my sons. In addition, by giving them every opportunity to become productive members of society, the reduced financial, emotional and physical long-term care burden on me, their sister, and America is immeasurable. It is estimated to cost $7 to $10 million to care for someone age 21 throughout their lifetime who can't drive or care for themselves. If the uncounted of dollars we spent, along with the time, energy and sacrifices of our incredible family and supportive community, ultimately afford them a happy, accomplished life, then our efforts were a very small price to pay in the scheme of things. I truly believe that my open-mindedness and complete unconditional love were the most important factors in helping my sons to recover from autism. Hopefully we will show others a way, because if our family can do it, it is a testament that anyone can! Autism's Cause and Cure After extensive research I have come to believe, as many doctors do, that the epidemic of Autism is being escalated by genetics, stress, and environmental factors, like the toxins and microbes in our food, water and air. I wish no parent ever had to hear this diagnosis from their child‘s doctor. For those of us who have a loved one suffering from an Autistic Spectrum Disorder, the fact is that if it identified at a very early age, the better the chance to attack it and make significant improvements in child's abilities and potential for a happy, normal life. Symptoms of the illness, in all of its varied forms, and treatments including therapies, current medications, schooling approaches, parenting philosophies, diets and other new techniques make Autistic Spectrum Disorder a very complicated problem to diagnosis and correctly address. Autism is such a terrible disorder, not only on the person who has it, but on all those who love him or her and try to be helpful. By continually learning and trying new approaches to end this consuming disorder, everyone's understanding of this iproblem will improve; enabling the rest of us to cope with the limitations it causes and love unequivocally, our ill family member. More than any drug or treatment, I truly believe that love and unconditional care beginning with the immediate family and extending throughout the community and Government support at large is essential. It's not a cure, but it a critical piece in putting the puzzle together to find one. For more information or national resource suggestions, feel free to contact me at autismcoaches@yahoo.com
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