I’m the father of a child on the autism spectrum. I am one that lives autism awareness.
A father that has to accept the realization of the life my son will have is not the one I dreamed about at his birth. I have to accept it is none less, none worse or better, just different now with autism.
I am full of autism awareness and always traveling down new paths. One that is dedicated to providing the best possible life for my children. One that won’t ever give up- ever. I am one that was and still is crushed by what autism has done to my child and my family.
** If you want to hear my story leading up till now then continue on. If you are a new parent of an recently diagnosed ASD child and are looking for info on what to do next then you’ll want to head on over here.
**Disclaimer** I tend to ramble. My writing is not professional and most times is actually pretty crappy. I try to keep a sense of humor in life and rely on sarcasm; it is essential to my livelihood on this journey. My outlook can appear grim – I tend to see things half-empty. My opinions are mine and mine alone. They are spoken from actual experience and research. I make no apologies for what I write and some will consider it strong. If what I say is offensive to you have two options: 1.) you can correct my mistakes, constructively debate or make suggestion like an adult or 2.) go bury your head somewhere else. Don’t need any more drama than I have.
**Disclaimer #2** I’m not against vaccines. I grew up respecting that “Dr. knows best.” Trust the white coats. If you have a problem go see a Dr. and they’ll give you an antibiotic or a shot. That’s just the way it is, or was, for me at least. I’m Pro-Vaccine on a revised schedule: a schedule that’s appropriate for you and your biological position. If you are determined to have a predisposition for vitamin D deficiency then that is something a Dr. and you should take into consideration when making decision on what should be ingested or injected in to your body. Although my change in opinion came with much despair, guilt and disappointment. So don’t ask me if I’m am against vaccines. Instead ask me why I changed my mind.
I’m a married father of 3, two girls and a boy. My son is the middle child, we’ll call him “Panzón” which is his Spanish nickname meaning “a little chubby belly.” He’s not chubby anymore but the name sticks. He’s 5 years old now and was diagnosed with moderate-severe autism on November 15th 2014. Both his sisters are normal or have no autism diagnosis.
For the past 3 years, our lives have been turned upside down with Autism. They, the “professionals” who perform the diagnosis say my son has autism. I say the whole family has it. Autism becomes a part of the family and everyone is affected.
Autism is also debated to be a “gift.” I disagree. I fucking hate autism with so much passion. This will enrage many people with autism, parents of children, siblings or family members and friends. If you feel autism is a gift then I am happy for you but do not tell me my son’s condition is a gift because it fucking sucks. Every day.
I’ve been told many times that I’m one of the oddballs since many conferences, chat rooms or Facebook Groups are filled with mothers. I hear that many fathers are not involved, don’t want to be or are not vocal or visual. I can’t speak to statistics on this and I don’t care, I am involved heavily in my son’s everyday.
This is just my way to vent and share with other dad’s and mom’s what I’ve done and learn from others.
We received his diagnosis with total disregard of our feelings; meeting took 15 minutes. Here are the results, here are options – good luck! I have finally learned that no one can truly tell how you feel until they have been through the same. Having been handed a poorly xeroxed series of paper with “number to call” and told it’ll be a long path and to move fast because “time is of the essence in his treatment.” I went into “action” mode and called insurance, visited providers and quickly realized inside of a week that this thing called autism, is actually very prevalent. There were waiting lists everywhere to receive Advanced Behavioral Therapy (ABA), and Speech Therapy (Speech), and Occupational Therapy (OT) and Physical Therapy (PT).
With much work and a very hard, hard fast education I was able to acquire in-home ABA for my son, Speech and OT weekly. We transformed the lower level of our home into a 1,200 sq. ft. learning center. Work area, play and calm area.
I believed one of the things that many parents will remember looking back is those “special people” that stood out. Those that actually cared enough to listen and offer real help, even if it was the delivery of more bad news. Those that returned calls and emails. The ones the followed-up with news- good or bad. For me, there were so few.
Quickly it was apparent that this disorder is actually a new business model. Some actually prey on the weakness and desperation of parents to find solutions and help.
My Autism Path to Today
We’ve done a ton of things to actually determine “what” this autism disorder is that he has. There are many things going on with Panzon and every day has high’s and low’s. I talk about the day-to-day over on my autism blog.
In 2015 we were a part of a petition to have Michigan be the first state allowing autism spectrum disorder as a qualifying condition under the medical marijuana laws. Our son actually became the poster boy for the movement. Let me tell you, this was a weird time, and the wife was not very happy with it either. She’s never even touched a drug in her life and now she was standing behind the possibility that it could provide some benefit to her son. We convinced the MM Panel 4-2 in our favor. Then the Director of LARA (Department of Licensing and Regulatory Affairs) shot down the vote of his appointed members. He said there was no science that supported showing it could help a child with encephalitis of the brain. The Lt. Governor Brian Calley who has a daughter with autism never supported us but came out after his boss killed our win. So it was a clear political – pharmaceutical revenue move. Sad IMO, especially when you have someone in power that could actually make a difference who also lives with autism. Instead, that pharma money won him over. That’s ok my son has so many co-occurring conditions that getting him a pediatric medical marijuana card was simple.
Since then three states have voted and included autism as a treatable condition for cannabis with 2 doctors and a parent caregiver oversight. So in reality, we paved the way for other states. Our Lt. Governor Brian Calley kept his pharma contributions.
Why is it a “Spectrum?”
You see, it’s called Autism Spectrum Disorder but that is like saying you have a cold or “don’t feel well.” It’s too broad and I’m convinced that is out of convenience and liability. Why? Once you dive in you’ll learn, if you choose to actually listen and start down the rabbit holes (and there are many) and the many paths where you can’t see the horizon. Many roads to travel and many choices to make.
Treatments for Autism
Currently, we are on a path that seems to be providing Panzon some noticeable progress. This didn’t happen overnight nor was there a protocol that we were taught. If there is one process or autism protocol to start with I would recommend TACA. TACA stands for Talk About Curing Autism and it is run by parents of kids on the spectrum. TACA is not new or fly-by-night and have been around for a while. Read more on my take with Taca on the blog.
Panzon’s program or autism treatments include:
- a strict GF/CF/SY and sugar-free (as much as we can) diet
- Organic chicken, eggs, and rice cakes
- Daily organic juicing (helps with delivery of supplements)
- Whole plant (no flower) cannabis juicing (when trim available)
- High CBD/THC RSO oils daily (modified for a high THC/CBD ratio)
- Specific supplements, special blend probiotics
- Rerum Protocol (now VitD in various forms)
- Bravo yogurt (No longer; have replicated with non-dairy delivery)
- ABA 6 days a week
- School 5 days a week
- Speech and OT 2 times a week
- Lots of sun, salt water, and swimming
- Daily walks (or me biking or pulling him)
- Lot’s of verbal, physical direction and
- Tons of hugs and playing around
What Treatments for Autism Work?
This is a great question and not all treatments for autism work for every child. No two children on the spectrum are alike. Here are some autism treatments in no specific order and some we have tried:
- ABA (Advanced Behavior Analysis)
- Stem Cell Therapy
- CBD / THC Cannabis
- Speech Therapy
- Occupational Therapy
- Physical Therapy
- Social Skills Classes
- Gluten Free , Casein Free, Soy Free Diets
- Going Organic
- Psychiatrists and Psychologists
- Floor Time
- iPad Apps
- Music Therapy
- Saunas and Hyperbaric Oxygen Chambers
- Public Special Education
- Aqua and Swimming Therapies
- Vision Therapy
- Driving Therapy