“We do not grieve as the world grieves. We grieve. But we grieve with Hope”.
– David Landrith
The average life span for Americans is 72 years old. The average life span for my son is 36 years old. This was the most sobering statement I read on “Light it Up Blue Autism Day”. And I’m enraged. Why are we celebrating this? Why are we celebrating Autism acceptance? Do we celebrate cancer? Do we celebrate diabetes and heart disease? No! We fight them. We look for cures. We find better ways. We encourage people. We root for them. We don’t define or accept people based on their illness. Do we?
This 36 year lifespan is based on the number of young children who die from fatal accidents. I imagine it’s from things like drowning since most of our kiddos are attracted to water. It’s probably from wandering off into the road and getting hit by a car because kiddos like ours can be “runners” or just not have safety boundaries because they don’t understand concepts like danger.
Most people don’t understand the complexities of this autoimmune, life shattering illness. I even hear about people who get upset when people speak of recovering their child from autism. Why? Why isn’t that something to celebrate? Why don’t we have a “Light it Up Blue Autism Recovery Day? We celebrate cancer survivors and rightfully so. Do you really think 3.5 million Americans who have autism have it because of genetics? Seriously? That’s just plain impossible. Autism is medical. And it is reversible in many cases. There are thousands and thousands of parents out there doing everything they can to survive and to find that missing piece of the puzzle that will help put their child onto the recovery track. Many have accomplished this and deserve to be celebrated.
Hi, my name is Kasey and I’m an autism momma. My son is currently 4 1/2 years old and is completely non-verbal. He goes to a special autism school in which he needs a one-on-one aid. When I was pregnant with Jacob, I was probably in the most toxic state of my life. I had been laden with mercury and aluminum from being heavily vaccinated in nursing school (and my whole life), had extreme stress, took Tylenol and Tums, ate non-organic, processed foods, and have a lifetime of antibiotic overuse. If you look at the research, first children inherit the majority of their mother’s toxic load. Next, Jacob had a pretty traumatic birth. I was in labor for 34 hours and after back labor and pushing for 2 hours, he wouldn’t come out. After all of that, I consented to pitocin and an epidural. Following that, I let his pediatrician bully me into his vaccines when my mom gut kept saying “just wait”, “not yet”. Jacob developed extreme colic, projectile vomiting, constant high pitch crying, and he never, ever slept. When he started to crawl, he crawled with one leg while dragging the other one behind. Doctor said that was normal (it’s not normal). He started to point, clap and play peek-a-boo, but that went away. He started to say “mama”, “dadda”, and “bu-bu-bu”, but that all went away, too. In hindsight, we remember lots of red flags that new parents may not be aware of. In addition, the denial was heavy. We couldn’t even say the “A” word. When Jacob was around 18 months old, he was no longer progressing and actually regressing. He was having long blank stares in which nothing would make him flinch (probably absence seizures). He would no longer eat the food I was feeding him. He had dark black circles under his eyes and pale white skin. He couldn’t walk in the grass. We went into a long battle of fecal smearing. Poop everywhere. He was sensitive to sound. He had and has sensory processing disorder, texture issues, food aversions and sensitivities, transitioning challenges, leaky gut syndrome, severe inflammation, developmental delay, and obviously brain damage. When the average person thinks about autism, they don’t think about all of the underlying medical issues. Without intervention our kiddos do not get better and can get much worse.
Our biomedical journey started when Jacob was 20 months old after I read a book that told me I had a window to save him. Age 7. I have to recover him by age 7 or else he will be lost forever. I panicked and went on a research binge. I got an appointment with the only DAN pediatrician in TN. We started him in Tennessee Early Intervention Services. Here comes the new gluten free, dairy free, soy free diet. The massive amounts of supplements. The blood testing, hair testing, stool testing. Epsom salt baths, new water filtration system. It was a whole new way of life. I had to learn how to reduce his toxic load. I couldn’t control everything, but I could control what was in our home. This can be an exhausting and overwhelming feat; however, taking it one step at a time made the process far less daunting. This is also the time when I learned so much about the difference in quality of essential oils (but that’s a story for another day). We introduced methyl b12 shots in the summer of 2015. It was like a miracle. We began to meet Jacob. He was so happy. He was sleeping more soundly. He was making so many noises trying to vocalize. He drank a smoothie. This was it. He was getting better. Five weeks later, he crashed. He lost all gains and more. We were devastated and the disaster continued. This time it was much worse. The head banging, the screaming, the crying, the melt-downs. Throw in a colic, non-sleeping newborn and you have a family in severe distress. Every day was pure survival and our marriage had hit an ultimate low that seemed incapable of repair.
That is a teeny, tiny snippet into our life two years ago. After our attempts in biomed, we were divinely led to another form of medicine. I’ll talk about that later!
Grace be to God – we can fast forward to today and say we are on a healing journey in all areas of life. Jacob is doing well in a new special school. His severe belly distention is gone, he is having more solid bowel movements, he makes complete eye contact, he sleeps well throughout the night, he acknowledges when called by name, transitions are much better, he is super affectionate, he makes connections with his brother, and sometimes we see glimpses of who he is. There is hope. Do we celebrate him? Yes, every single day. Are we aware of his autism? Oh yes, oh very aware. Do we celebrate it? Absolutely not. We grieve it, but we do not grieve without hope. We fight it. We live in prayer and hope that one day our little J man will have a bold voice. Until then, I will be his voice. I have had to learn to find mine and his through our journey. My hope is that I can help others find their voice, too.
Squash Pancakes 
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