Tuesday, February 27, 2018

Magic Bullet Vs. A tool to go in the Toolbox

Treating autism is a weird journey.

First you have the fact that the etiology of autism varies by child.  So every kid's causative factor or tipping point event is going to be different, and that means that every kids treatments will be different. This is absolutely maddening and some days devastating - when you see a tool that works for someone else either not work for your kid or actually harm them.

Then you have the problem of the doctors.  The ones who are well versed in the weirdness of treating autism RARELY take any for of insurance, and the testing and treatments they offer are also very rarely covered by insurance.  We are personally out of pocket over half a million dollars at this point between therapies and travel (remember the 10 day trip to mexico to do HBOT?) and supplements (at one point we were averaging $900/mo in supplements alone).  We are very very fortunate that not only do I have a solid primary job, I also get paid (which amazes me) to be Dominic's CNA because of the particular medicaid waiver he is on. His disability is severe enough that the state pays me to parent.  Blows my mind.  I take it because we don't leave resources on the table.

Then you have the near constant churn of tools, therapies and products.  Many of them are presented by their manufacturers as THE ANSWER, and for many autism families they do well.  Those things that we've used successfully over the years and that remain in my ToolBox are:

IonCleanse by AMD footbaths
Restore prebiotic
Essential oils, anti viral herbals, and immune boosting vitamins
Chiropractic adjustments
Reflex integration (we've used an OT who was a Brain balance person who IS becoming a Musgatova person)
Intense speech therapy
PMB Hemp oil 
PEAPure (anti inflammatory out of Europe)
ABA (we still use the tools from our time at Alpine)
Dorfman Dyspraxia protocol (i pulse this about once a year)

Then there's the discarded tools - the ones that we used that no longer serve us for one reason or another, OR ones that we tried and massively tanked on, which I'm not going to list because we tried them, didn't mesh well, and moved on.

I was talking with one of my peers a few days back - An autism mama of a teenager, who has been in the trenches over a decade at this point. As have we.  We talked about how it seems ALL of the sudden there's a TON of new things for Autism families to try, and all of them are supposed to be  --MIRACLES!!!!

They are things like Liovi brand yogurt (we're just getting started on it, and I'm really impressed with Dominic's shift in compliance levels), The anti androgen protocol (been on about 6 weeks, getting ready to taper off. Didn't see anything bad, also didn't see anything amazing), Magic socks (this one is new, our first pairs will arrive soon. I'm very intrigued from a sensory and reflex stand point.  My aforementioned friend says "they're weird but they work"), some algae called Rens (that I literally know nothing about but the name), a plethora of nutritional stuff - Zennoa is on my radar, but my radar is F.U.L.L...

I do not expect any of these to be a magic bullet. I expect about half of them to have positive results, and maybe of those one or two will end up in my forever tool box.   When you've been in the trenches as long as we have (Dominic regressed around a decade ago, shortly after his third birthday.  Thats sobering to say), you rarely even get excited about anything, you document like crazy and you hope.  Hope is the only thing that we have going for us many days.

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