It certainly isn't for those who "celebrate" National Autism Awareness Month.
It is for those who dare to take the time to read about the reality that is life with vaccine injury.
Life with autism...
(Which for the majority, is life with vaccine injury.)
Which for the majority of those I know, is very much the title of my blog in being a lifelong journey from hell to HOPEISM.
I want to share about a brief visit I had with one such warrior mom who I will not identify...
I have to share it because the reality of her life needs to be known because it represents the reality of so very many in this autism community. The reality of our lives that is rarely shown because if it were to be rated as a movie, it would have a "graphic violence" warning. The reality of our lives is so far from what is portrayed, how we actually live, it's pathetic. That so many like this mom are in every community, is a horrific tragedy of epic proportions.
And yes, I'll say it.
It's a tragedy that overshadows the holocaust.
I do realize that what I'm sharing here, is but the tip of a very large iceberg in how so many of us must live. As bad as what I've seen, experienced, or know of is, there are those who live with much worse. How much worse? That they would murder their children rather than live one more day with no help and no hope that help will ever come. That they would rather commit suicide because death is kinder than life. The iceberg of an entire generation of severely affected adults with autism (vaccine injury) will sink this country when the collision comes of when they are left to the state after their parents die or simply cannot care for them any longer.
I was just so moved by the stark reality of what I saw in how this warrior mom must live that I cried on and off the rest of the day. Not in pity of her, but for the situation she is in. She is a fighter. She deserves such enormous respect. It is the situation that moved me. The all-too-familiar situation of those who care for adults with autism who are bigger and stronger than they are.
I went to her house to pick up some supplies that she didn't need - and after a brief hello as I'm checking on my son in the car and she's checking on her son in the house - she showed me her new outfit.
Her son, like so very many, has behavior outbursts and meltdowns and at times pretty significant aggression. Like so many of us her house is adorned with patches from holes knocked in the walls. For some, it's from kicks or punches from innocent adults who have no communication. No way to express hurt, frustration, chronic inflammatory illness, or any number of things that vaccine injury or "autism" has triggered. My house is adorned with many such patches from holes in the walls from where my son fell because of violent seizures. A few weeks ago we were inaugurated with our "first". Our first hole in the wall that he actually kicked. It was late at night and instead of our son being able to read a book or watch tv if he wasn't tired - he laid there repeatedly kicking the wall.
(please ask us if we thought about disciplining him to not do that)
You see autism first hand even walking up to her house. The glass pane on her front door is covered in tape from a meltdown. I keep mentally thinking that I want to have my husband go replace the window for her, but then he's still got a few holes in our home to patch. What makes me so sad in that, is how I know we can't help her because we don't have the money to. There are so many things we need to do that we can't. It's always like that. It is us helping each other. Or at least wishing we could. With few exceptions, no one around us in our family, our church, our community seem to get that. Maybe if we wore dirty ragged torn clothes and lived on a street corner someone would finally notice our need for help. Too bad our need isn't that obvious. On the surface, we're just like any other typical family. The "disability" in our life nothing that at a quick glance stands out. Many, like this warrior friend of mine, live as I participate in my exercise class.... The "suffer in solitude and silence" mode in the back corner of the room.
For many, their suffering is very much silent. For fear. Fear that though they are doing everything in their power to help their child, someone will judge them and make them out to be the bad guy. Threaten to take their child away, as if there's a better place for them out there! Let's not blame an entire system that has failed our kids, let's blame the parent. I was a victim of that in how I dared to share bloody pictures of the aftermath of my sons seizures. Instead of anyone offering to help me figure out what caused them (or who - pharma) I was turned in to Adult Protective Services for sharing that reality of what vaccines did to my son so that others would know how to avoid that happening to their son.
Every time I go to her house and see her front door, I think how it is her church, her family, her neighbors who should rally to fix that door for her. But sadly, much like when my husband was abruptly laid off from his job, it is our very own community who rallies for us and who help us despite needing help themselves. In our case, a GoFundMe was set up where people who had no business giving anything because they were as broke as me - gave what they could.
Every.One.Of.Us. need a GoFundMe for something in our lives with autism.
(please suggest we seek state services/assistance for our loved one with autism)
How this friend keeps a sense of humor about her is beyond me. I admire her, and so many just like her so very much. Warriors living with such extremes in their children, never knowing if one moment will be a smile or a smack in the face. Never knowing if the day will be yet another trek through hell or the HOPEISM of as good a day as we can hope to get despite all our children must endure.
Like so many of my friends, this one is single. Her husband left her with a very significantly affected son who is taller and stronger than she is. Like so many of my friends, she's been in a crisis situation and has had to call the police or ambulance during yet another meltdown that our kids have that is triggered by who knows what... It can be as complicated as pain they can't communicate or that you did some sequence out of order and they just couldn't handle it. Whatever the cause, the outcome is always the same. Police arrive and the only help they can give is to handcuff a severely affected adult with autism. Which makes things worse, not better. Our kids have been tasered, and in a few instances, shot. Some suggest taking them to the hospital which is hilarious because there aren't even any hospitals that are properly equipped to handle the complex needs our kids have. There is no 9-1-1 for autism. There is no sensory friendly "hospital" for autism. There is simply no tangible, appropriate help for the brand of autism that most I know have.
For this mom, all there is, is bubble-wrap.
And a whole lot of faith.
And humor.
When she showed me her new dress, for a split second I didn't know whether to laugh or cry.
I did laugh.
It was hysterical in a most horrific kind of way.
A grown woman, a dear friend, reduced to having to make a body shield out of bubble-wrap to protect herself. Bouncing off a wall would be much better than being obliterated by it. Her bubble-wrap dress was complete with duck-tape seams and velcro to attach her phone to it in case she needed to call the non-help 9-1-1 help.
She's pretty darn talented. This bubble-wrap dress had a crew neck opening, tank top straps, then went down to about her knees with duck tape side seams. I wanted to ask her if she could make me one with Camo-tape seams for one day if I need such protection.
And maybe some princess seams because, "Does this bubble-wrap make my butt look too big?"
Sigh........
If you don't live this life, I want you to read those last few paragraphs again.
I want you to fully digest that in a society where we have the technology and intelligence and resources to do most anything - we have left mothers like this one with no help, no resources, and very often no hope that things will ever change for them. Society has given her nothing except being reduced to making herself a bubble-wrap protective shield of a dress for in case her son has yet another meltdown and through no fault of his, takes it out on her.
With all of our American Red Cross and compassion and help for everyone in every other country or human situation, what we've told this mom is that all we can muster for her is bubble-wrap.
I told her she needs to patent that design because there are thousands of mothers out there who need that dress, or who will before they know it.
She could sell them online. Custom made with your choice color of duck tape for the seams.
With the epidemic numbers of autistic adults who have violent meltdowns, she would be rich.
Allow that to sink in.
This friend is pretty petite in size, so when I noticed before she modeled her bubble-wrap dress that her bottom half was a bit - bigger - I figured finally she was able to have time for herself and actually eat something.
But then she showed me her other design for everyday wear.
The bubble-wrap dress mainly for during a meltdown.
The shorts for daily wear in case her son shoves too hard or something. She took the waterproof pads that come with deliveries of incontinence supplies, and stuffed several layers in her pants all around her hips. If she was forcefully shoved, at least if she fell her hips wouldn't shatter. She would just bounce.
I want society to read that again.
What other parent in any other disability is reduced to bubble-wrap dresses and puffy pants?
None.
No other.
We had a good laugh about her new wardrobe, but make no mistake, it isn't funny. We can laugh because we live it. It's the only defense we have against insanity.
When I left her house, I didn't think I had any room left in my heart for another scar, but that visit put one there. I cried all the way home for her, for so many others like her. I cried that one day it could be me being reduced to wearing bubble-wrap to protect against my son.
The worst I've experienced so far was a hand or arm too close to his teeth when he was mad about something or hurting. When trying to prevent him from hurting himself, at times I've been inadvertently slapped.
The injustice against us and our kids in these situations is nothing short of horrific.
I've had friends be out in public and suddenly their adult son went from happy to meltdown in a split-second. Instead of help from police called by perhaps well meaning bystanders to help them, they were punished, arrested. Absolutely no awareness from those whose job it is to help. Making a horrific situation become nothing short of a living nightmare.
I rarely take my son out in public because of the fear of what has happened to others, happening to me.
My friend shouldn't have had to even think about making a bubble-wrap dress and puffy pants making her look like the "Blueberry Girl" in Charlie and the Chocolate Factory.
She needed to have a list of phone numbers of people, of adult men who are trained in autism-care who she could call to come protect her and her son during a meltdown.
But where is the ambulance for that?
Where are the trained volunteers for that in each community?
No where.
Where are the short-term crisis centers where parents at the end of their rope could bring their children for behavioral intervention while they can catch their breath?
No where.
To even attempt to do that for every community would financially break cities.
Would financially collapse our country.
So who do we have to turn to?
Our families who give to most everything else except to the person in their own family who needs the help.
Our churches who send mission teams to every other country except for the autism community in their own back yard. Yes, they may "know about" Jesus, but perhaps we need to realize the equally important aspect of them actually "witnessing" the hands and feet of Jesus...
Our society who would rather pretend we aren't there or call the cops or CPS on us instead of taking the time to care, comfort, or collaborate with others in helping.
There are few exceptions, and for that we are thankful if we've been the recipient of such blessings.
But for most, help is few and far between.
If at all.
For the most part what I see is that this mom has a bubble-wrap dress, puffy-pants, and still a taped up front door window.
And as I laugh hysterically at the picture she sent me of her modeling her new wardrobe, with the smile that shows both grace and strength despite the adversity, -- all I can think of is what the helmet she'll make next will look like.
Because we all know, insurance or medicaid sure won't pay for a real one for her.
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