When my son Christopher was first diagnosed with autism, I was terrified. I had no idea what what to do, where to start, or what his future would hold. All I knew was that my happy, engaging, perfect baby had disappeared, and I would do anything to get him back. I knew he wasn’t born with autism. I knew something had happened to him. But, I didn’t know how to fix it.
There are some realities, some things that I now understand, that I’m glad I didn’t know in the beginning. My brain would not have been able to handle a lot of it then. But there are other things I wish I knew back was Christopher first got the autism diagnosis that would have made the initial steps of the journey a little easier.
I wish I knew that there were groups (like TACA) that I could reach out of for support. I wish I knew that I would meet amazing parents who would really be a lifeline on the autism journey. Also, I wish I understood how much I had to rely on myself and my instincts, and that they would be the most important guide to Christopher’s treatment. No was was going to fix this for me. There are many professionals who can help, but no one is going to put you on that yellow brick road to the magic recovery. You need to guide that ship yourself. I wish I knew that the basics – diet, vitamins, and minerals – would be just as important, if not more so, than more expensive “heavy hitters.” I said before that when we first got the autism diagnosis, I just wanted to get Christopher better ASAP. I thought if I threw everything at autism (including all my money), something would have to stick. What I didn’t realize was that until we got his body in good shape (and for us, this meant working at an inter-cellular level), he wouldn’t be able to respond to all those expensive treatments. Finally, I wish I knew how important it would be to take care of myself and the rest of my family. I devoted all my time and energy to research and therapies and treatments. But, Christopher actually responded better to all of those when we were able to have some stress-free family downtime. And that made all of us happier too.
Today our autism parent expert panel fills us in on what they wish they knew back when they first got the autism diagnosis. This is our last installment of the Autism Expert Panel. I am so thankful to the panel for participating and helping me with this series! If you missed any of the previous blogs from the Autism Expert Panel, please check them out:
The Best Advice For Autism Parents
The Most Effective Autism Interventions
How To Help Marriage Survive Autism
Successful Single Autism Parenting
The Best Way To Handle ‘Autism Hard’ Days
How Autism Made Your Life Better
What People Need To Know About Autism
ASK THE EXPERTS
What do you wish you knew when your child first received the autism diagnosis?
“Take a deep breath, cry and then get ready for some serious work ahead of you. This is your baby still and he is counting on you. There is no room to feel sorry for yourself or him. On a side note … maybe invest in wine stocks as you will be drinking some from time to time. Joking on that last part … sorta.“
“Raising a child with autism is a marathon, not a sprint. Pace yourself!“
“Start treating immediately and stop vaccinating!“
“I wrote an article, The 7 Things I Wish Someone Had Told Me About Autism, that goes into more detail. But, I wish that I had known the following: There is a lot of information out there and no one agrees on anything. There is no magic bullet or instant fix. Autism is medical and treatable! The medical treatment makes it possible for our children to learn. Some of our relatives don’t get it. Keep talking to your child even if he doesn’t respond. Hang in there! Recovery takes time and a never-give-up attitude.“
“You will get through this. Your son will defy all of the odds and you will maintain your sanity too. 🙂 Oh, and don’t touch the college fund because he’s going!”
“You will be proud of what you are going to do.”
MEET THE EXPERTS
Erica Daniels is the author of Cooking with Leo: An Allergen-Free Autism Family Cookbook, medical cannabis activist, public speaker and is the single mother of Leo who struggles with autism and chronic health issues. Erica’s life changed and gained new purpose after her son was diagnosed with autism in 2007. Erica founded Autism Advisors LLC and #hope4Leo 501c3 after years of struggling to treat her son’s autism using conventional and biomedical treatments with little or no success. Eating a healthy allergen-free diet and using natural medicines such as medicinal cannabis have greatly improved Leo’s health and autism symptoms. In 2016 Erica founded the autism420 Project, an initiative for legal, safe and appropriate access of medicinal cannabis for use in autism.
Kim Stagliano is a nationally recognized autism advocate and lively speaker. She has three daughters with autism, ages 21, 19 and 15. She is author of the memoir All I Can Handle I’m Not Mother Teresa: A Life Raising Three Daughters with Autism, the novel House of Cards and co-author of 101 Tips for Parents of Girls with Autism. Kim serves as Managing Editor of www.ageofautism.com, the nation’s first daily web newspaper about the autism epidemic. She writes for The Huffington Post, and The Autism File Magazine. She speaks at national autism conferences and has appeared on Good Morning America, ABC News, Fox News, in The Chicago Tribune, The National Catholic Register, and on blogs around the world. A former sales and marketing executive, Stagliano lives in Connecticut with her family.
Kristin Selby Gonzalez is the mother of a child on the Autism spectrum. In 2008 she began serving as the Director of Autism Education at Enzymedica. Since then, she has advised numerous supplement companies with respect to their policies and product formulations for children on the spectrum. Kristin speaks all over the world, having educated tens of thousands of caregivers throughout the years on different strategies to help children on the Autism spectrum. Since September 2012, Kristin has been leading the Autism Hope Alliance where she serves as President and Chairman.
Laura Hirsch is an author and blogger for The Thinking Moms’ Revolution. Her TMR nickname is Oracle, and she wrote chapters for the TEAM TMR book, Evolution of a Revolution and the upcoming TMR puberty book, along with numerous TMR blogs. She has also written three books of her own: Widowed Too Soon, Foundation of Discovery: The Cause of Autism – Channeled, and The Other Side of Autism. She advocates for food safety and has been featured in the documentary Genetic Roulette: The Gamble of Our Lives. Laura has two incredible children, one of whom has regressive autism and is the inspiration for her advocacy work. She lives in Reno, Nevada.
Marcia Hinds is a motivational speaker and autism parent. Her powerful message has been featured at autism conferences all over the United States. Marcia’s inspirational book about Ryan’s recovery makes you rethink autism. I Know You’re In There shares what her family did to help Ryan and tells their story in a way that is heartbreaking, heartwarming, and sometimes hilarious. Marcia has a B.A. in Psychology/Sociology from UCLA as well as a teaching credential. But Marcia’s most impressive credential is that she is Ryan’s mother and their family survived autism. For more info go to www.autism-and-treatment.com.
Mary Romaniec is a reporter and the mother of a child who recovered from autism by the age of four. In addition to mentoring hundreds of families around the world, her articles about autism have appeared in Mothering Magazine, Autism/Asperger Digest, Autism Today and Journeys Magazine. In her book Victory Over Autism, Mary discusses the stages of grief associated with the diagnosis, followed by the winning attributes parents will either possess or adopt as they strive to the goal of better health or full recovery for their child, as well as a better future.