If you haven’t read Part 3 yet, you can read here!
The Turning Point
2011 was definitely a difficult year for our family. We had come to learn about Autism diagnosis coping and adapting as best as we could, and yet there was another bump in the road ahead. While our autistic son had about 5 or more poopy diapers a day (still at the age of 2), our youngest, just a few months old at the time, didn’t poop at all. He would go days, weeks and even a whole month at one point without pooping. We had a new pediatrician at that time. I went to see her because she also had an autistic son. Unfortunately she was not concerned about the extreme constipation symptoms experienced by our baby, even telling me it was not worthwhile to go to a specialist. She said a specialist wouldn’t tell me anything different than what she had told already told me. Miralax and prune juice should fix the problem. But after all I had read and learned from Autism, I felt something serious was going on and decided to go see a GI specialist on my own. The only downside was that without a referral we had a long wait until we finally consulted with a GI doctor at Children’s Mercy Hospital. After an agonizing month of no poo, some tests were run and our baby got diagnosed with Hirschsprung’s disease. A congenital and life-threatening disease in which a portion of our son’s large intestine didn’t contain nerve cells that were responsible for its peristalsis movement. That explained why our baby didn’t poop. His colon had expanded so much he needed emergency surgery right away. Fast forward 3 months, lots of research and 3 surgeries (and a colostomy bag), our baby’s life was saved and our lives were somewhat back to normal.
I was grateful but at the same time I was a mess. I found myself in a really dark place. I didn’t want to make a big deal out of the events that had transpired that year; after all, we were figuring things out and making great strides toward our road to recovery. But I felt really alone and close to being burned out. Every fight seemed like an up hill battle. I felt I was met with a lot of resistance for my ideas about Autism and recovery. Looking back that was all I talked about. I would eat, sleep and breath Autism. I felt like every decision I made would make or break my child. I also felt incredibly guilty about his Autism. I, at one point, believed that I had caused his Autism and ruined his life, so it was my responsibility to fix it. I talked to God a lot during that time (wait, I still do) and I can’t remember how it happened, but I found a book called “Autism and the God Connection” by William Stillman. I consider that my first “awakening” to Autism and spirituality. For the first time in a long time I experienced a sense of peace. Finding that sense of peace turned out to be what I needed to feel invigorated and ready for what was to come next.
One of the first books I read about Autism is called “Louder Than Words”. In this book Jenny McCarthy shares her son’s story of recovery. One interesting thing she mentioned in that book had stuck with me. She said that every parent of a child with Autism should go to an Autism Conference at least once. And boy, she was right! In 2012, there I went to Autism One. This conference was definitely the turning point for our family. I think it was then my dream of recovery really seemed achievable. I went with two of my favorite mom friends and there I discovered 3 things that were crucial pieces to our recovery: chiropractic, pathogen removal and The Son-Rise Program. I learned about oxidative stress, the role of viruses, pathogens and gut microbiome. Most importantly, I learned that the autism diagnosis was not just about what was going on with the body physiologically (which usually is not what mainstream medicine believes, but that is where I started my search for recovery). There was also a social-relational factor that needed to be addressed: The difficulty kids diagnosed with Autism have to connect with others.
To be more specific, these were the things I learned during Autism One that year:
In a presentation by Dr. Tony Ebel, Certified Pediatric Chiropractor, I learned about the role of oxidative stress in children with Autism. He says:
“… most every child we see with spectrum disorders has two major challenges at the root of their issues: An overstressed nervous system that is stuck on the “gas pedal” and thus in protection mode right from the beginning of life, or even before. Therefore an amazing quote by Dr. Bruce Lipton summarizes both the cause behind the issue, and if we really understand it, the solution as well. His quote states, “You can’t be in growth and protection at the same time.”
Dr. Ebel was so kind and helpful. He offered his personal e-mail address to connect us with a wonderful doctor in our area. That is when we started seeing Dr. Alyssa and Dr. Amanda at First Choice Chiropractic. Using applied kinesiology they were able to tell us what our son’s body actually needed in respect to supplements and treatments. Their accuracy was astounding and to this day we still see them.
In another presentation I learned about the role of pathogens in children with Autism. Pathogens such as viruses, bacteria and even parasites, which come into the body as what we call the transitional flora, take advantage of a compromised immune system to develop, taking nutrients from their host and also secreting neurotoxins. While pathogens thrive, the host suffers from several ailments linked to nutrient deficiency and fail to thrive themselves. Some kids don’t grow or gain weight no matter how much they eat. They also crave sugars and starches, refusing other foods. Exploring the roles of pathogens in my child’s body and using different protocols to eliminate them was an extremely helpful piece to our recovery.
In Raun Kaufman’s presentation I learned about The Son-Rise Program. Raun was severely autistic as a child and has grown to completely recover with no traces of his previous diagnosis. This program changed our whole perspective on what Autism even was. The Son-Rise Program offers a loving and non-judgmental approach to Autism. Their philosophy helped us recognize that our child was doing the best he could and his behavior was telling us something important about him. We learned, instead of stopping his repetitive behavior, to use them as a bridge to connect with him. As we did when he was a baby and we babbled in response to his babbling. I learned how important it was to be present with my child. Using that approached I was able to allow myself to join and explore the wonder in my son’s fascination for jumping and flapping his arms, running in circles, flipping the light switch on and off, or spinning the wheels of his cars. Through that process I was able to inspire him to look at me again, call me mommy and tell me he loved me for the very first time. I remember at one of our sessions he looked at me longingly and gave me the warmest, most genuine hug, as if he was saying “Thank you”. This program was and continues to be an incredible experience for us. It taught me that it was more important to wait for my child to be ready to connect with me, creating a trusting relationship, embracing his uniqueness, even when they seemed odd or uncomfortable to me. The most valuable skill I have learned from the Son-Rise Program was to explore my own belief system. Exploring how I felt and why I felt a certain way. But one of the most important realizations of all to me was that all the work I was doing to recover my son I wasn’t doing for him. I was actually doing it for me. That was extremely empowering to me. It allowed me to experience the journey without being totally fixated with the outcome. I still believed in his recovery but I was no longer attached to it. With that mentality we have been able to create a bridge between our son’s world and our world. And with that we accomplished so much that most experts believed impossible. For more information on the Son-Rise program visit http://www.autismtreatmentcenter.org.
Through all these interventions we experienced the miracle of being able to connect with our son once again. He was present and tuned in like never before. But there is more to our story! This blog is mostly dedicated to healing through food and it is my mission to share everything I have learned and continue to learn through our healing journey. But the healing process is not just about the body and the mind (although I have one more story about that). But it’s important to consider that true healing involves the body, the mind and the soul. Stay tuned for the last chapter of this story about love and healing!
To read the final part of our story click here!