It's been a while since I've dusted off the cobwebs of this blog...
Dusting it off in disbelief today - I was asked to elaborate on an "a-ha" realization from a survey done on timeline of "autism". The survey found what we have known for decades: regression into autism.
They wanted more information. I was glad to give it. But more on that later.....
Not that significant things haven't been happening - it's just that as the years race by those things become harder and harder to get a moment's break from.
One would think that with a "disorder" or "disability" that grows exponentially each tracking period, the urgency of "why" would grow even more exponentially.
But that hasn't been the case.
The only thing I've seen growing just as exponentially is the pushback for any potential help, the continual refusal to acknowledge a cause, and the whitewashing of any "label" that would give medical urgency to the profound severity of our "autism".
In my son, his disability becomes more profound with each passing year.
Lately, it has been hard to escape the "time keeps on ticking ticking, into the future" reality. That future still after all these years of sharing, shouting, advocating - being a black hole of after three decades now - still no plan in place for what happens to my son the moment after I die, and who pays for it. Please don't insult us with the reply: "There are State Institutions or Group Homes." Much like in "A Christmas Carol" --- when Scrooge didn't want to give money to help those in need because "Are there not workhouses and institutions?" ---- Much like the spirit speaking to Scrooge - I wouldn't send my son there for anything. But what choice is there? I've been an advocate for enough years now to know exactly what kind of "care" one gets in an insanely high ratio of caregiving and an insanely low wage for providing such neglectful care. Fight clubs recorded on phones, clients going in walking and coming out in wheelchairs due to that significant of abuse.
And as far as group homes?
Give me a list.
Show me.
Show me where in my community I could move my son in where he will receive the 3-shifts a day of care I provide in the 1:3 ratio his care demands. His special needs diet. His supplements. His need to be out - do - not sit and be drugged.
And as a bonus challenge - it has to be fully covered by Medicaid.
The thing that sustains my sanity given such dismal reality of fact --- is my faith.
But even that can be questioned by some in: "If you have Faith - how can you worry about that?"
Hence the complexity of this warrior community.
We do have Faith.
We have been given no choice but to worry.
The two absolutely go hand in hand because the depth of this issue of "Profound Autism" - which for most like me is actually profound vaccine injury --- is that deep.
There has never been anything like this creature before - with tentacles wrapped around every aspect of life - for life.
And to think that still - after all these not weeks, months, years - but decades - we are still stuck in the quicksand - still sinking - still with this debate over what to call it and how to address it and denying what for most caused it --- is maddening.
Sad really in light of all we have given up and fought for in begging for help - to be heard!
I don't allow myself to look back very often, and when I do I try not stare. But it's hard not to stare at these pictures. In 2000. I remember the more than a year before this rally - the hours upon hours of planning for it in helping those groups who organized it. How in the mayhem of being in the middle of the madness of our life with autism at that time - when there was even less knowledge about it - all of us still managed to fight like hell for our kids, your kids, for no future kids to go through this!
And the pictures of my son -- the proof compiled of that switch that flipped off almost overnight it seemed!
I, like many, have lived through all this and more -- on our own - spending money we didn't have, making the time we longed to have but just a second of to care for ourselves.
The only help being study after study on the stress of caregivers, yet no real solution to how or where we get such a respite creature!
So --- much like many of us, I had this "Faithfully Fumbling" moment you can read about here:
That blog story will happen to all us warrior caregivers one day - and often.
The toll of decades of self-neglect. The decades of being told how important it is to get sleep at night, yet no help for our loved ones to actually sleep - so we can.
The decades of being told how important exercise is - yet show me the gym that has provision for adults with profound "autism"? Show me where we can take our loved ones to run free and be out of their four walls for time away as well!
I've never met a more overlooked community in my life. No other disability is like this. None.
Yet those who aren't so affected -- dare to deny us the voice we finally have at the IACC? The IACC that has finally acknowledged the profound of our severity?
Dare to deny us a label as equally profound as our lives in calling it what it is -- profoundly severe autism? Well, almost, I think we're just finally at "profound". Baby steps......
And I'm not even sure "Profoundly Severe Autism" would do what we live with justice.
It most certainly doesn't come close to what our actual loved ones must feel each and every day that goes by with no real, tangible, urgency of help.
Help covered by Medicaid.
Which is a whole other beast to tackle.
Profoundly severe autism is a diagnosis for the rich.
But I digress.
The survey.....
All these decades I have meticulously compiled every Pediatrician visit, lab test, EEG, anything we did to help figure out how to our son. I have shown it to every doctor we've seen. Nothing. Nada. Zip. Zilch. Zero interest.
I have even been to the IACC to give public testimony -- never once - a follow-up or anything that lets me know my voice was heard.
A disease growing exponentially that no one is interested in finding a pattern about....
Perplexing.
But finally with this new blood at IACC -- someone asked us in a survey about our kids.
They obviously read what we shared about what happened to our kids.
And then they followed up with more questions on the timeline of that happening to our kids.
In my #HOPEISM that is the only thing keeping me afloat these days - just the hope that one day, one day what happened to our children (now adults) will matter. That one day, one day, our voice will truly be heard! That survey and follow up was a huge life vest thrown to a drowning and callously disregarded community.
And to see post after post of autism organizations, self-advocates, protesting that HOPE is profoundly perplexing.
Why?
Are we out there protesting their needs?
No.
Call yourselves whatever label/diagnosis suits you!
But for us, when our now adults will need lifelong care in an infrastructure that society doesn't even realize needs to be built, ---that reality is profound!
It is severe.
It is profound.
And it's perplexing how anyone can hinder a proper label that will bring a desperately seeking services community the help they've been begging for - for decades.
It is suffocating the fear we have for our loved ones future after we die!
We need profound help.
NOW!
Not perpetual debates about a label.
