Hi friends,
My name is Shawn Blymiller and I am the founder of the Pure Living Family Foundation. We have gained quite a number of new friends over the last few months so let me give you a quick summary of what brought us to this point.
In 2018 our son Theo was diagnosed with level 3 autism after we did all sorts of tests to see why our beautiful boy had massive regression in his development. A year later he was diagnosed with PANDAS which is an autoimmune disease that causes brain inflammation (encephalitis). PANDAS flares are awful. Theo would punch himself in the head or scratch himself until he bled. We have heard stories from all over of kids banging their heads against beds and floors. Parents are desperate for answers in these situations. We know. We have felt this desperation.
After searching for any and every answer we could from conventional medicine we found a new age doctor who had a son with autism who practiced functional medicine. He tried everything he could with Theo for over a year before he suggested a Fecal Microbiota Transplant. We had to go to Mexico for this treatment because the FDA doesn’t approve of this treatment in the U.S. unless it is for C-difficile infection, which is usually for senior citizens who have been overprescribed antibiotics, or for clinical trials at Universities. We didn’t have time to wait on a waitlist so we went to Mexico and did the FMT. Theo’s PANDA flares stopped completely.
Until 6 months later when Theo and I were in a car accident. A truck going 50+ MPH slammed into us and totaled our Subaru Ascent when we were stopped at a red light. His truck was in our third row. If we were in a car he would have killed Theo. This accident sent Theo back into his PANDAS flares. Again we were desperate for something immediately. So we returned to Mexico. However, this time we went for a stem cell injection. This treatment again is only allowed under clinical research in the U.S. With the stem cell therapy we were again able to stop Theo’s autoimmune PANDAS flares.
We know that we are very fortunate to be able to provide these treatments for our son. Insurance doesn’t cover this type of treatment. It is all cash based. We have met amazing parents around the globe who are doing the same type of thing for their beautiful kids.
One thing Angela and I have learned along the way of our journey is that it is very easy to reach burn out while racing to find answers for your kid. We know what it is like when it is your sole primary focus to relieve the suffering of your child. However, we have also learned the hard way, that if you don’t care for yourself while doing this, you will burn out and it takes longer to recover. Your kid ultimately pays the biggest price if you do “bonk” (burnout).
That is why we would like to provide tools through the Pure Living Family Foundation to help you manage your stress levels. We had our first virtual event in April where we offered a free Yoga Nidra meditation session through Zoom. One hour of a Yoga Nidra session has been shown to be the equivalent of 4 hours of sleep. We know what it is like to be operating off of 2-4 hours of sleep. Cortisol stress levels make anxiety spike and everyone is more irritable. We want to help you manage what life gives you.
This last week we offered our first in person sound bath and connect date night for mom and dad to meet other parents that are in this same reality. I know it sounds counterintuitive to leave your special needs child in the care of someone else. It takes a lot of trust and faith to find someone that cares for your precious child. But the payout is worth it because you and your spouse can connect at a deeper level and have more energy to face your challenges.
A sound bath meditation is a meditative practice that uses crystals that resonate at different hertz levels. The sound waves provide a gentle massage to all of the cells in your body. People always ask: What do I wear to a sound bath? I like to wear sweats or yoga attire and lay on a pillow with a blanket. There is no stretching in yoga nidra. It is just laying down and feeling the vibrations of the sounds coming off of the crystals. It is very relaxing.
Next month we have one of our functional medicine coaches, Kat, who will be leading a simple meditation practice through Zoom. Meditation allows you to be more aware and mindful of the thoughts that you are giving power to in your mind. We like offering virtual sessions so people can join from the comfort of their own home, and we like to start these practices around 9 pm so hopefully the kids are sleeping. Please sign up for this event on our homepage. We will be hosting a mom’s retreat in August and a dad’s retreat in September.
We would also encourage you to follow us on Instagram and Facebook where we share the latest. If you have been watching recently, we have some really exciting updates on Theo. He has started spelling to communicate. We have a practitioner come to our home and she reads him stories and then asks questions based on the content that she just read.
Theo has been blowing our minds. He spelled “mental health”. That was my absolute favorite and I had goosebumps and butterflies as I witnessed him spelling it. He understands way more than the world gives him credit for. He is actually really intelligent. We are learning all about the history of spelling to communicate which originated from Soma Mukhopadhyay. She is an amazing mother of a boy with nonverbal autism, who developed what she originally called the Rapid Prompting Method. You can check out her YouTube here.
You can also watch this fun documentary online.
While working with Dr. Robert Mellilo in New York (https://www.drrobertmelillo.com/ ) we have learned a lot. Kids with autism many times have an overactive left brain and this inhibits the right hemisphere. As we activate more of Theo’s right brain we can see that he is able to self-regulate more. We are just beginning our learning in this new reality and we will continue to share our findings.
Dr. Mellilo provides a spelling session as part of his intensive 1 week treatment that we went to in April. Dr. Mellilo told me to read Ido in Autismland and I am so glad I did. Ido is a nonverbal boy who wrote a book by pointing to letters on a board to express his thoughts. Ido showed me that I need to be challenging Theo more, especially in fitness. Ido says the following:
“Being fit enables me to tell my responsive body what to do. I work out with a trainer now because I need to have my body learn to be more responsive. Now I see where my problems lie. My soft muscle tone needs to get stronger. My cardio endurance needs to improve and I need more core strength, so I work on everything. Stretching is my most necessary thing and I detest it because it is painful. I will do it because I need to and it is worth the hurt.”
Thank you for following us and helping us provide these resources and support through the Pure Living Family Foundation.
Shawn