I don’t submit to forcible massage!

Life is presently kicking my ass.  A series of things going wrong has exceeded my ability to soldier through.  I’ve decided to take a break from social media, and pull the edges of my world inward.  My plans to fly east this weekend were foiled by a panic attack at the airport.  The T.S.A. pat-down on my way through security proved to be too much touch from a stranger for me.  Suddenly, I couldn’t breathe, and my heart felt like it was trying to escape my chest cavity and run home without me.  The agent helped me to a seat, brought me some water, and sat with me and my nephew until he told her that walking away would be more helpful.

After a bit, I was able to get it together, and we returned to my place.  My nephew is awesome, in case that wasn’t obvious.  Upon our return, we discovered my phone, internet, and cable were all down.  This is the downside of using one company for all three services.  Especially when that company’s infrastructure is such that a single car can wipe out everything instantly.  When I tried to call them to see what was going on using my cell phone, I discovered that their phones were also unavailable, (initially).  I finally discovered from their Twitter feed that it was a widespread issue, and that they were working to fix it.  I finally got through on the phone, after being on hold for 42 minutes, when the reason for the outage became known to me.

During that time, I listened to the same loud, low quality recording of announcements, interspersed with an even worse quality blurb of music on repeat.  This is one of the delightful aspects of having Autism.  At least for me.  When I begin a task that evokes a lot of anxiety (talking on the phone), my ability to do anything else is absent.  It’s so frustrating.  I know a neurotypical person would adjust the phone volume to a less annoying level, or set it to speaker phone, and set it down.  These things didn’t occur to me in real time.  In my mind, the rule was to remain diligently attached to the phone in anticipation of an answer.  So that’s what I did.  For 42 minutes.

Finally, a real person answered the phone.  I froze for an uncomfortable moment, in which I willed my voice to work.  It worked.  But before I could say anything, he rattled off what he’d probably been telling several other irate customers:  We know your service is down, and we’re working on it.  I asked what happened, and he informed me that there was a car accident that resulted in a cut a fiber optic line.  I commented that I was surprised a single car could instantly take down all their services.  This was met with silence.  The silence continued for an astonishing amount of time, after which I said, “Hello?  Are you still there?”  More silence.  I looked, and we were still connected.  Apparently I offended him, and his reaction was to stop responding in hopes I’d end the call.  I ended the call.

I called back, and this time followed the automated voice prompts I previously ignored in order to request a phone call when services were restored.  My nephew was bummed because no internet meant no gaming.  I never realized how internet dependent video gaming is these days.  Fortunately, my new VR goggles allowed him to play the games I already had installed.  Yay for Oculus for having that feature!  We took turns floating in the ocean with various wildlife.  At one point, I chose great white shark, and found myself floating in a shark cage.  I kept seeing shadows passing in the distance while spinning around looking for the shark.  Then it was RIGHT THERE, and I got so startled I forgot how to use the controls in order to move back from the cage bars.  So I was right up against them, and the shark was coming in fast with it’s mouth open.

Yes, it’s all fake and the fake shark couldn’t possibly harm me.  But when you’re in a VR environment and you have let go of any sense of the real world, that shit is scary!  And yes,  I did feel dumb for screaming at a fake shark fake attacking fake me.  My reaction made my nephew want a turn, so we switched, and I told him I didn’t want to play anymore.  Because I’m a wus.  So he switched to different game, and I read my book.  All this time, I was still pretty freaked out on the inside.  It takes a long time for me to fully recover from a panic attack.  Reading helped me get there, and then I went to bed.  When I awoke, all my services were restored, but I never did get that phone call to alert me.  Sigh.

Naturally, I had to reboot my modem and router before they’d work properly.  It’s super nice outside today, and they opened the outdoor pools early this year.  I didn’t swim for long, but stayed by the pool while my nephew did.  I went on Twitter and played a few hashtag games on my iPad.  I had fun, but a tweet of interest flew by, and I followed the link to read the article.  It was by a parent of an autistic child describing what it’s like (to her), to have an autistic child.  It was clear this parent was overwhelmed, exhausted, and caught in the misinformation and vileness that is Autism $peaks.  The entire article was a complaint about how hard it was to be the parent of an autistic child.  It detailed specific challenges her child faces, but was far from respectful of that child’s privacy.  Nobody wants their parent to go online and tell the world about extremely private aspects of their life.  It’s a horrible thing to do, and this parent clearly didn’t know any better, or just didn’t give a shit about her kids feelings.

It made me so angry.  Parents are supposed to protect their children from public shame, humiliation, and betrayal.  Even most Hollywood moviestar parents draw the line in the sand when it comes to publicizing private details about their children.  It’s a societal taboo.  Children have no rights, and must be protected.  If that parent thought it through, I would like to think she would reconsider publicly sharing such information.  I can’t bring myself to blame this parent, though.  Her exasperation at fighting the system in order to get her child’s needs met was clear.  We all do dumb shit when we’re exhausted and exasperated.  I responded, and was reminded why I’m not an Autism activist.  I don’t have the type of personality that can witness a child being mistreated without bursting into tears.

All I could think was that I already loved this child, just from the short description of how she communicates to her parent that she wants to take a bath.  And that her own parent is a huge part of the problem because of misinformation, ignorance, and no help.  When I tried to point her in a more helpful direction by suggesting she reach out to Autistic adults, I was blocked.  Instead of letting it roll off my back, and redirecting myself to something positive, I burst into tears.  It was telling me that my suggestion was unwanted, unheeded, and eliminated.  That continuing to put this child through hell out of ignorance is preferable to anything I have to contribute.  It was a kick in the face because I, like every other Autistic adult, am an expert in how to live with Autism.  I know by doing, living, experiencing, and suffering until I finally got to a place where existing is better than not existing.

I’ve been where her daughter is, and it’s a scary place to be.  I remember it too well, and given the choice between reliving that hell, and dying, I’d pick death in a heartbeat.  Or, the lack of a heartbeat.  I know that little girl doesn’t know yet that death is an option, so she’ll continue to suffer and struggle until hopefully her parent figures out how to cope, or gets help that isn’t just harm in disguise.  The tears come from my fear that as with far too many parents, this child will end up murdered by her own parent.  This is exactly what happened to the little Autistic girl who lived across the street from my childhood home.  Filicide happens far too often, and needs to stop.  I’m a failure at advocating.  At least for now, knowing I won’t ever give up and accept the status quo.  So I joined ASAN, and sponsored another membership in hopes that whoever gets it is a good advocate.  And now I’m off to read.

2 thoughts on “I don’t submit to forcible massage!

  • Wow that sounds like an overwhelming time! I hope you get some down time and remember to be kind to yourself.

    It sucks that the parent didn’t know what a massive opportunity she dismissed when you offered your support… But the only thing you could do was offer. We can’t force people to see things logically unfortunately, else she would have understood that your insight and experience counts for so much and could truly have helped her. Not your fault ( I know that rationally and logically you totally know this lol but it still hurts to be dismissed perhaps?)

    It is hard to be a parent of any child, not only, and definitely not specifically, an autistic child. If I could change M, make her somehow more NT? There’s not a chance that I would. Not even for a second. It isn’t she who needs to change, it is the misguided world she has to endure at times. She is awesome, as are you. X

  • Ps, I’m not dismissing the fact that it’s difficult for a an autistic child ( or adult) to negotiate this majority NT world. I only point out that parenting generally is hard because for me it’s not ok to blame the struggles of parenting on Ms autism, the struggles are usually the stupidity of a system, ignorance of others, etc. We have a duty as parent to learn, learn learn. Fact! “She” is not the problem and it’s so important to me that M understands that as she gets older. I’m just being the best mum I can, to my daughter, whom would need my support in this complicated world with people’s daft expectations anyway, because honestly it can be tough being a kid ( or an adult!) x

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