Songs for Lexi

Songs for Lexi

HBOT update & election's potential impact on Autism Epidemic...

Sorry to report that HBOT thus far has not worked for Alexi.  We are not seeing positive changes... yet.  


Here's what I do know:  

I know that we rid her body of excess YEAST, I know that we have whittled her diet to exclude excess SUGAR and CARBS, I also know we are not as strict as we should be about cow's MILK which should be totally eliminated but that its inclusion in her diet has been much reduced.  I also know that she has been receiving one hour sessions of more concentrated OXYGEN for about 2 months now and that we have not seen much improvement. 


There is almost no limit to the things we can spend our money on trying for her.  She is almost 11.  I am not giving up - believe me -  but am trying to be realistic.  Autism impacts a family in so many ways.  For our family, it mostly impacts our ability to truly rest.  After a jam-packed holiday week which started with my birthday - which led to Thanksgiving - and the impending rush towards all things Christmas -- this being the Monday morning-after brought up this reflection... 


Our evenings and weekends are largely spent either IGNORING or DEALING with the fact that Alexi is up early many mornings (like at 3am), laughing without reason, jumping on her bed and from windowsills, blasting her ipod, craving movement and swinging constantly and scripting incessantly.  She cannot help what she is doing, of that I am convinced.  Her true nature is sweet and loving, mixed with humor with a teaspoon of rebellion and a tablespoon of sassy tossed in. The truth is that her brain and body are at war and that the urges she feels and reacts to are all due to the fact that she is trying to RIGHT herself, trying to SOOTHE herself. This I know to be true and more than anything else, and our ultimate goal is to help her feel okay within her own body.  


This Thanksgiving break was hard, there, I said it.  Trying to keep Alexi from waking up sleeping guests, trying to keep her off the computer, trying to feed her properly, trying to host and socialize and relax is hard work for our family.  It dawned on me how rare it is for us to sit and watch a movie together, because the guilt ratio is so high.  Indulge one daughter and you end up ignoring the other one.  We do it by splitting up a lot, but my memories of lying around after a holiday during a school break, watching movie after movie and truly relaxing are old memories from my youth.  This is a rant - no doubt about it - believe me - I am thankful for our family, our friends, our home - I am truly blessed in so many ways and mostly grateful for my husband for the fact that he and I are extremely lucky to work so well together as a well-oiled unit when it comes to this friggin' autism.  Let me reiterate that I am not unappreciative for what we have - just tired I guess.  Tired of working hard to fix what we can, without feeling like this issue is getting the attention it needs from the "powers that be" I suppose.  Which leads me to the next section here...


The Autism epidemic and our election.  


WHEW what a whirlwind this campaign season and this election have been.  So much exposure of our nation's antiquated and ugly points of view...  so much disappointment displayed about our leadership's failings and our unhappiness and fear as a nation on display via social media... hearing about battling families heading toward holiday time.  It was hard for so many to see the good in others, so hard for many to go home on Thanksgiving and to mix with opposing viewpoints about our impending leadership. Which brings me to my silver lining in what I felt was a surreal mess of an election......


While watching Donald Trump's son, Barron, on TV, many of us parents of autistic children saw a child who seemed to have autism.  Once you have a child with autism, you can usually spot it in other children quickly... often faster than that child's own family can identify symptoms.  Trump has been quoted as saying that Autism is, indeed, a largely ignored issue of epidemic proportions.  And then, videos started surfacing of his son's autistic-like behaviors.  And quotes of Trump saying that he believes in vaccinations, but he believes in rescheduling them to be a lesser amount and more spread out.  And then, a glimmer of hope gleams through this messy election filled with hate and ugliness.  


Here is a video link example if you care to watch it:


Many folks connected to Autism causation research have..... died.   My first entree into this was finding out about the death of Dr. Bradstreet.  I had watched the following 2013 Autism 1 conference video online, only to find out afterward while googling his name that this amazing, eloquent doctor, and father of an autistic son...... was dead.


Here is an article about 50 mysterious deaths connected to autism research:


So, heading to exercise this am to work off some stuffing/gravy!  


Listen, life is full of twists and turns, you live to 50, as I am proud to admit, and you see some things - good and bad.  


I am thankful to have this method of communication and I thank you for reading this rant, especially.  





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