WARRIOR MOM_S AND DAD_S

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Thoughts From A Recovered Parent

Going it Alone... but Never Lonely By Kendra PettengillK & Khttp://ih.constantcontact.com/fs004/1101659254324/img/40.jpg?a=1101820568184

Last Tuesday, McCarthy took the couch on The Oprah Winfrey Show,declaring the truth that autism is treatable, and that there is recovery forsome families. And I felt vindication and joy - at last. My favorite momentwas at the end when Oprah leaned in and whispered to and Holly Peete, "You are Warrior Moms." I thought to myself, "Yes, we really are." But it occurs to me that 's ardent declaration might bring littlecomfort to the parents who write to us here at ARI asking, "What about us,the have-nots?" Just like the rest of us, was given no guidebook toautism. She experienced the same bewilderment and felt marginalized bydetached pediatricians and other experts, just as we did. And despite fame,beauty, and financial means, had to learn how to help her son in

thesame trenches as the rest of us, with messy hair and no makeup, in front ofher computer in the middle of the night. When she called it "the Universityof Google," I realized we were kindred spirits. Once got the information, she had access to resources that many of uscould never afford. I am more typical: as a single mom, I work 40+ hours aweek, and I make around $30,000.00 a year.But here's the good news: I recovered my daughter. Recovery on a Shoestring

I did it alone. I did it without a doctor. I did it without any professionalhelp and without assistance from any government agency. I did it alone, butI was never lonely. I did it with the "University of Google," and Oprah's"Warrior Mom" mentality. I did it with dogged determination, sacrifice,intense research, and the personality and mental state of a grizzly bearprotecting her cub. In effect I became a medical expert, a nutritionist, abiochemist, an ABA therapist, a special-education attorney, a mediator, anadvocate, and a courageous communicator. Without fear or hesitation, Icalled authors and experts I came across in books and on

the internet, andfound that many answer their phones just like you and I do. Our founder, Dr. Rimland, was one of the easiest people to talk to on thephone, and one of my biggest cheerleaders and supporters for going it alone.One of his greatest fears was that parents would get the message that theycouldn't do most of the treatments on their own, while it was his firmbelief that they could, and should when possible.I was never lonely, because of fellow parents. My angels and saviors werethe many amazing people I met online. Some formed shoestring non-profitsjust to help other parents. Some hosted internet groups aimed atfacilitating the autism conversation - help, advice, and support forparents. From clarifying intricate technical questions to providingshoulders to cry on, we carried each other through our journey to recovery,for no pay, fighting together for our children's health and dignity.

My daughter's diagnosis was "severe autism." I was told she would neverspeak and that she was mentally retarded. She spent her time rocking,flapping her hands, pulling her hair out, biting her arms and hands untilshe bled, and banging her head on the floor, the furniture--or even aconcrete sidewalk--while having one of her hundreds of meltdowns. I was toldthat as she got older she would turn her rages against me. The advice I wasgiven was, "Take her home and love her until you have to put her in aninstitution." I was advised to contact a lawyer to set up a "life plan" tocare for her for life. This is when parents are typically provided the "noknown cause, no cure" information by "acknowledged experts," or are told to"Just have another child," as if the ones we already have are disposable. Instead of giving up on my precious child, I decided to fight back, and thetruths I uncovered are

astounding. I have read more books, studied morescientific research, examined more policies, cried tears of sadness and joy,and reveled in the amazing return and recovery of my beautiful daughter, thegreatest love of my life. I endured clueless criticism from those whoclaimed to understand my motives as well as my emotions.Why Me?So what led to recovery? It's clear that while I did everything I couldthink of, I did not recover my daughter because I was more determined thanother mothers I know. I did not recover my daughter because I spent moremoney than others. I did not recover my daughter because I made moresacrifices, or because I'm smarter, or a better researcher, or made betterconnections than other moms. My daughter recovered because she happened to be a "nuclear reactor." Thatis, just as my daughter was pre-programmed or susceptible to be damaged inthe first place, she was for some

unknown reason "susceptible" to recovery.I feel lucky, but I also feel something like guilt. The initial "Why me?"when my daughter was diagnosed with severe autism has been replaced with anew one: "Why should it be my child that recovers, when others don't?" So I've dedicated myself to this cause: I want to see every child makeprogress, whether that means full recovery or just being healthier and ableto live free of physical pain, because treatment is not only about recovery.'Haves' and 'Have-Nots' are useless labelsIn most ways, I was a "Have-Not." Denied professional assistance and unableto afford treatments, travel, and conferences, my daughter seemed a hopelesscandidate for the biomedical approach. What I did "Have": A loving andsupportive family. All the money in the world can't buy a spouse's supportfor your biomedical endeavors, or stop relatives entrenched in theallopathic medical

paradigm from attacking you for your views and efforts.Those parents who are not abandoned by family and friends after thediagnosis are in many ways the best equipped for this difficult journey.Paired with that kind of support, the little money it takes to correspondwith other parents on websites and chat boards will go far.Take-away Message: You Can do This 1. You can do most treatments for your child on your own! 2. No, it is not easy. 3. It takes a lot of self-education. 4. The diet and supplements take a little more money out of yourbudget, but you can do it. 5. Understand that there are thousands of other parents out there whounderstand your mission is the ultimate act of love for your child, andignore those that say otherwise. 6. Educate yourself on special education law, and become an advocatefor your child. 7. Use whatever resources are available to you, without guilt.

8. Take care of yourself as well as your child, because you need to bepresent for the long haul. 9. Don't be bullied by anyone into doing something you don't feelcomfortable with, or your "mommy instinct" tells you isn't good for yourchild. 10. Never lose faith. 11. Pay it Forward. Help another family to find the truth that autismis treatable. 12. Support ARI and Defeat Autism Now! because they areforward-thinking national organizations dedicated to supporting individualsliving with autism today. Support ARI and Defeat Autism Now! as they are transparent, forward-thinkingnational organizations dedicated to supporting individuals living withautism. ARI conducts research and openly shares information that makes adifference now - not next year or in 10 years. ARI's research is notcompromised or affected by conflicts of interest from pharmaceuticalcompanies, or by any governing body.

ARI listens to parents, and honors ourstories as eyewitness testimony. Parents and organizations that havebenefited from ARI's aid have joined forces with ARI to help forwardresearch that makes a difference. Its integrity is why I work on ARI'snewsletter, and mentor families.So, to all Warrior Moms and Dads out there wondering if it can be done, letme offer you the encouragement you need: Autism is treatable, even forregular people like us