Facebook Status 1: Thoughts on Autism Awareness (inspired from a friend’s post)

Today’s first blog is inspired by a friend’s Facebook post, which was a link to a blog post titled: “There Is Blood On Your Aware Hands” (Posted on September 7th 2016 by Grimalkin) Note: I wrote this BEFORE I actually sat down and read the full news article linked to in the above link.

Below are some thoughts that sprang up inside me after reading the post (which I inserted as a comment on FB):

As a mother with autism who cares for, educates, loves (and fiercely protects) my young children with autism, this world of “bleeding heart” autism parents is one I have difficulty understanding. I used to be on autistic parenting Facebook groups and felt horribly uncomfortable and out of place (there are no groups for mothers and fathers WITH autism, just try and google it). I read the struggles, I read about the devoted parents who try to muster the strength to go on living in a world that does not understand their child. I’m flown back into my own childhood when about 80% of my waking life was me mustering the strength to keep living while all around, I felt my profound unwantedness, the despisal and disgust in me for who I was and who I was not– the giving up, and then the numbing apathy of “whatever happens, happens. She will deal with it”. The same things I sense in the parents’ posts are what I imagine friends and family feeling…..about me. I see those children within their parents’ typed words, crying inside, a number of them wishing for death, just as I had. If you are a parent who has autism you probably find yourself looking on to these FB parenting groups, searching for advice or moral support; if you are like me, you may have one or two parents you admire and try to emulate for “proper” parenting attitudes and behavior, at least if you are fairly new to being a parent or have never felt like you got the hang of it.

I wasn’t prepared to be shocked, triggered, heartbroken, and disappointed—you’ll see why. Read on.

After a while on these groups, I noticed a uniform theme, and it had an image attached to it: the (lonely) rainbow puzzle piece.

autism-puzzle-150x150

 

puzzel-piece

 

Often, there would be phrases or small paragraphs on these puzzle piece memes that would have Dr Suess quotes (“Why fit in when you were born to stand out?”), or words of encouragement and wisdom for the mom of a child with autism which I will just copy and paste here:

autism-mom-meme

I try hard to think that meme is also talking about me: AUTISM MOMS (moms with autism), because really, I experience each day as a battle through my own sensory tunnels and the dissonance between me, and those who I desperately try to get on the same page with. It is SO INCREDIBLY DIFFICULT to chase around a toddler when I am in the middle of a tunnel vision episode, or, to sing a nursery rhyme or continue reading a book when I have suddenly lost the hearing in one ear, or to explain to another parent why I can’t join them in the mall food court because the noise hurts me so bad it feels like my flesh is in full spasm and rolling right off my bones. It is so hard to look NORMAL in a place where looking normal means EVERYTHING, and I come up looking like a lousy mom to a lot of other parents. (But at least my kids are happy with me, and that is what should actually matter)…. I hope someone out there can see *me* as beautiful and worthy, no matter how rough I look from burnout and all I can do is sing 90’s commercial jingles in a Peter Griffin voice (and I hate the show Family Guy) or slap my knees in time to some song in my head. I hope there are mothers who can see through my anxious and annoying stimming exterior to the soft and emotionally vulnerable interior where a frightened and bewildered mother lives, full of hopes and dreams for her own children (which have the undertones of: “will my kids grow up to have more opportunity and acceptance than I’ve had? I hope so!” ) But, I realize that meme most likely has only one type of mother in mind, and that is the one that is seen as actually being capable of being a parent. **Deep breath** But this is why I must remember that my children have autism too, and they are seeing me being me, nothing more and nothing less. Yet, I also must remember that they see the way other parents treat me too. Maybe they do not feel so alone?

Perhaps the hardest meme for me to look at right now is this one:

13320625_1049798178433520_5313631185965909112_o

(AHHHH! STOP VIDEO-TAPING ME!)

After some time, I felt myself arguing with the mothers I at one time admired. More and more, the struggles they reported having with their children’s autism, the videos of their children’s meltdowns and the parental violation of privacy felt like an attack on….me. Now, I struggled with my feelings about these posts for a while, you know, trying to be objective, because I’ve been told so often throughout my life— “this isn’t about YOU!” And, at a glance, it isn’t. Though, beneath all of our external, stereotypical differences, on the cultural and human rights level, it is. There can be no objectivity in the face of this stuff. This is about me and my children. This is about my neurodiverse family. It is about how neurodiverse populations are perceived and related to and the considerations and rights we deserve. (Does anyone deserve to have their suffering and struggles videotaped and put on You Tube without their knowledge or against their will for the world to see and comment on?)

After a time, when I disclosed to offended mothers on FB (offended that I would throw a comment here and there in support of their children rather than them) that I myself have autism and proceeded to offer a bit of advice on perspective, the mothers became gradually defensive and hostile. All of this tension accumulated to the point where I would receive private messages on FB how I had absolutely no clue what they were going through, and I couldn’t understand what it was like to parent a child with autism. Realizing I was outnumbered, I got off the parenting groups altogether.

On FB threads about ID/DD adults having children of their own, the public opinion weigh-ins look about what I would expect them to for a society deeply repressed in its own limited and contradictory views of who makes a good parent; and, I can’t help but think about how many of these top-commenters have children of their own with ID/DD. My paranoia stoked yet further, I crawl out of my house to enjoy some time out and about with my children in the fresh air, doing things that humans might enjoy doing: libraries, playgrounds, museums, beaches and parks, and I look around nervously at all the other parents, guessing at their facial expressions (and oh have I guessed wrong), and hearing the whispers from FB threads of all those things said about me, my children—my kindAnd, I wonder if these parents beholding my overload in the checkout line at the grocery store as I swing and sway in unison with my son, I wonder if they look at me with those same thoughts in their heads that they pound out on their keyboards in the wee hours of morning for their support groups and such—  I am a person who should have been sterilized and kept from creating more of my kind. Shaming neurodiverse parents is commonplace, the more I look around, and yet, there is no widely-known support groups or networks of support in our physical, offline communities for US parents! Go on and google it: parenting support groups for AUTISTIC parents. I guarantee most of what you’ll see has to do with parents of autistic children. I have changed up the word order and tried using different words, but only found the same results. (Psssst! I googled the title for this very blog—“Facebook mothers with autism”—-and all that came up in the browser were sites on how to heal or cure autism).

So, my loudly proclaimed message to the world for now is: I AM NOT A PUZZLE PIECE…….MY CHILDREN AREN’T EITHER! Children with Autism grow up to be adults with Autism, many of which who will want families of their own. And who is to deny them that basic need and desire? As for autism “awareness”: Be(a)ware of me, because I will fight the restraints till my last breath, because I am set on living my life. For all the “awareness” —the watchful eyes wish to unsee parents with autism. There is a definite culture surfacing and our own language, and maybe this is how the Deaf culture came to be. There is a need to relate and communicate with our own kind–to embrace one another and learn about our world together and to live life free, happy, and fulfilled. That is what I want to give my children, rather than ‘socially acceptable’ behavior. We are wild humans, we are free and beautiful and yet we are suffering. I feel it is up to us…my kind, to determine our own future. I look on many occasions, to Deaf communities because they inspire me. I learn about what they have done with their adversity, and, I see much wisdom there.

My parenting is going to look a bit strange if not outright dysfunctional to a lot of neurotypical parents, even to those who claim to have open minds. But other Autistics (and I’ll find my own title/identity in time) will eventually know what our normal is and what that looks like, and we will share that with the rest of society. We will live, we will learn from one another, and we will be whole. I can feel it. 

I will conclude with the graphic below. Rather than the lonely puzzle piece, I want to conjure my own image that I drew myself this past year. It represents an ancient and meaningful archetype of the mother-child bond that I hold in my heart for my children and I:

 

the sun coloring page.jpg

*  I just now realized (four hours after publishing this blog) that the “Autism Dads” Facebook meme up top does NOT depict the two dads with cellphone cameras recording their children’s meltdowns. My eyes mistook the video game for a video recorder. That was clearly a trigger of mine, seeing so many parents video taping their kids in full meltdown to use as “proof” of how bad autism can look. And I get scared, of course, that there are videos mocking us somewhere on YouTube, just like there are for other adults and children with ID/DD*

 

 

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