Hope For Autism
Written by Dave Borden (“I’m Simply a Dad”)
The Autism Education Summit (AES) always promises to renew your spirit as an autism parent. This year was no exception. The event connects autism parents to one another and combines stories of healing with cutting edge scientific research. My wife and I have attended this event for the past 3 years, and every year we are energized, rejuvenated, and inspired to keep fighting for the health of our son. Armed with knowledge of the latest holistic treatments for autism and a renewed sense of hope, we left the Autism Education Summit (AES) ready to tackle the challenges facing our son.
Despite treating autism medically for 7 years now, we always learn something new at the summit. This year we learned about things like SPECT scans and how helminths (intestinal worms) can help calm the immune system. While learning the science is a great reason to attend AES, our biggest reason for going was to feel inspired. Once again, Generation Rescue (GR) delivered. The great people at GR brought plenty of optimism and encouragement with them to Dallas. These are the top 5 moments that helped us fill up our hope buckets again this year.
TOP 5 INSPIRATIONAL MOMENTS AT THIS YEAR’S AUTISM EDUCATION SUMMIT (in no specific order)
1. The Window is Still Open
“Don’t worry about losing your window. We can help autism at any age.” On day 1 during the very first presentation of the conference, the one fear I had was put at ease. As a parent of an older child (age10) on the spectrum, I’ve recently become concerned that we lost the magic window for healing our son. I know the earlier you start biomedical interventions the more likely you are to recover your child. That fact is undisputed, and it was reiterated to new parents throughout AES. Luckily for me, throughout the conference, the presenters also continually said it is not too late to help your child. Hearing Dr. Kenneth Bock say those words only 20 minutes into the summit quickly filled me with hope and put my fear to rest. Dr. Bock later explained that he had a 47-year-old with autism in his office that he helped tremendously. Later that same day keynote speaker, Dr. Daniel Amen echoed this notion saying, “you are not stuck with the brain you have.” It was as if GR’s science advisory board knew that us veteran warrior parents needed to hear this.
If I were ranking reasons to attend the Autism Education Summit, connection would be at the top of the list. You get to connect with brilliant medical practitioners, talk to first-rate autism researchers, and mingle with rock stars of the autism community like Del Bigtree (Vaxxed). More importantly, you’re able to connect with parents. Veteran parents greet each other in the halls with big smiles and bigger hugs. They offer words of encouragement and updates on their own family’s progress. After hearing an intriguing concept in a lecture, you’re able to turn to a parent and ask, “Have you tried that? How did you do it? Did it help?”
New parents feeling overwhelmed by the abundance of scientific information presented at AES were able to connect with veteran parents who were happy to answer questions and put them at ease. I myself was incredibly proud to wear the AES mentor shirt this year. I walked over to a parent following a Q & A session to help them figure out a way to start a gluten free diet for their son.
The most powerful connection you will make at AES is the community connection. When you attend the Autism Education Summit, you notice an energy flowing throughout the event. It is a feeling of interconnectivity. Whether it’s the brilliant doctors on stage, or the fellow warrior parents sitting all around you, you can’t help but feel united. We are all connected through our cause to heal our kids and change the world. The energy itself was enough to fill my heart and inspire. It’s no wonder I shed so many happy tears over the weekend.
3. Don’t Be Too Hard on Yourself
Parents weren’t the only ones that offered inspiration at AES this year. Friday evening there was an expert panel of doctors, parents, and siblings of kids with autism. Lilly Kenitz was on this panel, and she stole the show. Lilly’s sister Grace has autism, and their family has faced so many obstacles. They even lived at the hospital for 3 years due to Grace’s medical problems. Lilly has come out of her experience with an incredible outlook and an unbreakable love for her sister, which is something we parents hope for in our families. Lilly was asked the question, “If you’re parents could do one thing differently, what would that be?” Her response brought the entire ballroom to tears. Fighting back tears herself, Lilly said, “don’t be too hard on yourself.” She told the story of watching her mom beat herself up thinking that she was not doing enough for Grace. In an emotional appeal to the crowd, Lilly went on to say through tears, “loving your kids is enough. Don’t beat yourself up. You’re doing enough just by loving your kids” Many times I have battled the same guilt that Lilly’s mom struggled with. I have told myself: I should be doing more for Ethan, and/or I should be doing more with my other 2 kiddos. I want to thank Lilly for her words of wisdom and inspirational thoughts. I will never forget them.
4. We’re Not Anti Anything
Nico LaHood burst onto the autism scene this past August. I’ll be honest. I did not know who he was before the summit. My wife told me he was the San Antonio District Attorney who spoke out on vaccines. Nico and his wife, Davida believe that their child changed after receiving their 18-month vaccinations. Nico participated in the Celebrity Keynote panel. On stage, I discovered a brilliant and charismatic man who was full of passion and love for his family. Admitting he had no idea what autism was before it entered his life, he encouraged parents in the crowd to educate people on autism. Autism is more than just Rain Man. It’s bigger than then vaccine debate. “It’s our job as parents to teach people what autism is.” While Nico believes vaccines caused his child’s autism, he has been very forthright that he has not taken a stance for or against anything. This is his story. “My opinions are just my opinions as a daddy, and as a husband who happens to be the DA.” People outside of autism tend to look at autism parents as anti-vaccine nut bags who blindly follow Jenny McCarthy and her so-called “debunked science”. That is the biggest misconception that most people have about our movement. We take our personal experiences, listen to other parent’s experiences, and study the science-all of the science, exhaustively. Nico put it best when he said, “We don’t start from a position of anti-anything! We’re pro our kid! Whatever is best for our kid, we’re all in!” Despite being heavily criticized, Nico’s bravery perseveres. He stands by his truth, and we stand with him. Nico ended his uplifting appearance at the summit with final words of encouragement. “Don’t give up. Keep the belief that no matter what situation, something good can come from it. I am a better husband. I’m a better Daddy, I am a better human being because of the lessons my son teaches me every day.” A sentiment this Dad can certainly confirm.
5. Are You a Sheep or Sheepdog?
The big keynote speaker of the weekend was renowned psychiatrist and 10-time New York Time’s best selling author Dr. Daniel Amen. I’ve been a fan of Dr. Amen since reading his book, Change Your Brain, Change Your Life. He is an expert in the brain having looked at over 100,000 brain scans. Dr. Amen gave an incredible presentation on brain SPECT scans. He presented several case studies where he helped improve the health and quality of people’s lives through the use of SPECT scans. After thoroughly convincing us of the value of SPECT scans, Dr. Amen turned toward inspiration. He posed a couple of great questions to us.
“Many people tell you to just go along with whatever the pediatrician tells you to do. My question is to you, Are you a sheep or a sheepdog? What are sheep? Sheep are flocking animals. They go with the herd. They live in denial. They pretend all is okay and the wolf will never come. Most importantly, they are annoyed by sheepdogs. I’m sure there are many in your life that are annoyed by you. I know in my life. I annoy a lot of people because I am not a sheep. I know that there are dangers in the world.”
Dr. Amen believes our society is so sick because most of us are sheep. Most of us just simply follow what our doctors say never doubting their advice. But then, something happens. We see the wolf. We see the real dangers in the world, and we stop following. We open our eyes and become sheepdogs. Dr. Amen goes on to explain sheepdogs.
“Sheepdogs are serious! They’re highly trained, purposeful, and they love their sheep even when their sheep don’t love them back. They would give their lives for the flock. I think many of you here are sheepdogs. BUT, I want you to own it. I want you to be okay with it. Because what you are doing is important. You are protecting your flock and the people you love.”
Dr. Amen spoke on how he was brutally criticized by his colleagues. They called him a snake oil salesman and accused him of preying on mentally ill patients. He was so heavily criticized that he stopped talking about his work. But then, something happened that made him stop being a sheep. One day his 9-year-old godson, Andrew, attacked a little girl on the baseball field. His mom found pictures that he had drawn of him shooting other children and one showed him hanging from a tree. His mom said that Andrew is different. He is mean and he doesn’t smile anymore. Dr. Amen followed his gut and scanned the child’s brain. He found a cyst the size of a golf ball. At that moment, Dr. Amen lost his anxiety. This is my passion story. I’m Andrew’s sheepdog, he proclaimed.
There are people in your life that need you, and they are not there by mistake. Dr. Amen’s then posed one final question, “Who in your life needs you to be their sheepdog?”
There is always Hope
Once again, the #1 thing I brought home from the Autism Education Summit was hope. I will continue fighting for my flock and the people who need me. Even though my son is 10 now, I will never give up hope. I will not stop being his sheepdog.
Remain a warrior for your child. Do not lose hope. I haven’t given up, and I keep fighting so I may one day finally hear my son say, “Daddy I Love You.” Be your child’s sheepdog. Keep searching for the right treatment that will works for your child. The window is still open. Don’t give up. There is always hope.