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Sunday, August 12, 2018

#EndAutismInfightingNow

"Why is everyone screaming about Jenny McCarthy and what's this #EndAutismNow hashtag thingie and oh for feck's sake!" said the tired middle aged mom an autistic teen scrolling through Twitter one morning.

And we are at it all again. If there is one thing I think the entire autism community can agree on is we fight with each other. A LOT. Like we could medal in fighting. It seems Jenny McCarthy has a book coming out or is helping another autism writer out or something. It was hard to find all the details out when all I could find were comments and articles of people wanting her head on a platter. Anywho, she's uber involved and even recorded a "call to action" video about the book's release and it was a clusterfuck. Mainly due to the hashtag she teamed with it, #EndAutismNow.

Jenny, oh Jenny. Girl. GIRL. Now I get your kid is like sixteen so you have been doing this autism thing for a while now but Honey, have you not noticed by now that attitudes and feelings about and around autism have changed? You're on social media. You can't tell me you haven't noticed. I know I've seen it and I know just by seeing things and reading about them, it's changed a lot of my views.

Okay let's start with the nitty gritty as to why this hashtag kind of sucks. (There's just no way I can say this nicely. Sorry, I'm not the fluffy puffy autism mom that slaps a puzzle piece on anything that doesn't move.) Here are my exact tweets on what I had to say about it below. (Are you following me on there? @FrenchFryInc)

"Here's the real issue w/ the #EndAutismNow thing. There's the HUGE population of autistic people that isn't be supported. That isn't being employed. That isn't finding safe and affordable medical care/housing.
Then you have family/caregivers that also need support/resources/ for lack of better words, HELP. They're being ignored too by this dumb hashtag. they're also being ordered to be some new book's free PR team. Like they didn't have enough to do. (This in reference too her asking people to approach bookstores to hold events for the sale of said book for her.)
So two sides are at each other's throats because no one can sit down and actually figure out a way to be supportive and empathize. Folks, I'm here to tell you, you can do BOTH! Honest!
But if you are making me pick a side, sorry Jenny and Crew, the #EndAutismNow hashtag is insulting. To autistics. To the ones that love them. The ones that actively support each other. Pro tip. Hire a few autistic people to consult your social media."

Now before the rest of you all call for my head to join Jenny's on that platter, I'm not hating on her but I'm really done with this "OOooooooo! Autism is a big scary monster." fear mongering shit. Because I'm not just reading that and thinking in general terms. I think of my Kiddo. My Kiddo is the big problem that needs to be ended? Really?

And before you all go "BUT! BUT!! BUT!!! Prevention for future families from having to deal with this!!", yeah, I hear you. I get it. This autism stuff is challenging. I'm not denying that. (See, empathy to both sides! So easy to do!) However, half the challenging stuff gets MORE challenging when the current autistic population keeps being ignored. As a community, we still sadly lack the resources and support that is so desperately needed for a rapidly growing population. My Kiddo needs a job, not to be demonized by the general public when they see thinking like this. That he is a burden to be had.

What makes this all the more exhausting? It's most gas on the fire of fighting. Sometimes I chuckle when I see folks saying things like "Oh the comment sections on articles about politics are so nasty." Oh Bitch, you clearly ain't seen any given internet thread during Autism Awareness Month. We can't even all agree on a damn awareness color. (I still suggest we forgo colors in favor of things like fringe. One, it's cool on any clothing. Two, sensory input for the win!)

Jenny, your son is sixteen. Here's an idea. Put him on your social media team. Honestly. You're a middle aged lady like me. You need some young blood on that side of things. I sometimes run things social media wise past my teenage niece and she explains things to her old AF aunt.

Like can you imagine if you just shifted your platform to what needs to happen NOW as opposed to what hasn't happened or might not happen. We know there are people here now that could benefit and wouldn't that help us figure out what we need to do in the future when or if more come following? Isn't that more of a win/win here?

And the funny thing is, I'm typing this and knowing that as soon as I press "publish" on this piece, I am opening a Pandora's box of possible trolling from either or both sides on this. Pffft. Whatever. I have to get this off my chest. I'm tired of the infighting. I am tired of neither side showing any empathy or even trying to come up a solution of what could work. Maybe even just an acknowledgement of "Hey, yeah. We are both very different." Just stop the fear stuff. I'm so flipping tired of it.









Thursday, August 2, 2018

There's no crying in baseball.

If you have ever found yourself crying in your car, I've been there.

If you have ever found yourself crying in the shower, I've been there.

If you have ever found yourself crying as you load and unload the dishwasher, I've been there.

If you have ever found yourself crying and getting mad at yourself for crying again, I have been there.

There may be no crying in baseball but there sure is in Autism.

I guess Tom didn't get the memo. That's okay. He was busy riding on The Polar Express nightly. 


We have hit our annual August Angst.  ESY aka Extended School Year aka Summer School aka "Don't you dare call it camp or I will cut you" is winding down next week.  We're staring down a long month off.  Yes, I've been a member of Team Quirky long enough to know what I have to do but it's still a daunting task all the same.  Sure, we'll have little schedules each day to follow and events and activities but it's not nearly the same as having that school routine. 

And I swear each year it gets harder.

And I have to remind myself it's not so much that it's harder it's just a different set of issues that we have to get use to  and once we do, it will be fine.  "FINE!" she says as she weeps hiding in the laundry room into a mini bag of chocolate chip cookies that's she's inhaling.  (Yes, I eat my feelings and my feelings are delicious!)

I mean, we do have some big plans in the middle of this.  Our annual vacation. This will be trip number six to this resort because we're Autism Vets. We know what works so we stick with it!  My husband and I also really like it there and enjoy tagging each other to take on Kiddo wrangling duty so they other can get a break.  Like my hubby goes on hikes or to visit some dead President's home and I do something better like GET A MASSAGE AT THE SPA!

Kiddo's trip will be the following:
Get up and Mama Fry will remind him ten thousand times to be quiet because people are sleeping.
Eat Breakfast.
Outdoor pool.
Lunch.
Indoor pool.
Dinner.
More pool followed by some pool.
Bed.
Remind us as he is falling asleep that he wants to go to the pool tomorrow.
Repeat.

But I digress. That's a week we have a plan and part of me feels good knowing for a week we have stuff to do to keep him busy and engaged.

Except Autism comes on vacation too and while he's usually pretty good on vacations (I swear this kid lives for sleeping in hotels.) it has gone south now and then.  So maybe I'm worrying for no reason but I'm also no dope and I'm not going to pretend there's no chance that will happen because puberty has moved into this house with a vengeance. It also brought it's pal Anxiety and let me tell ya something, I really wish that bitch would leave my Kiddo alone.

I don't know what's going on with myself lately but I'm starting to think I'm having teenage angst and anxiety, the sequel.  Kind of surprised that the husband keeps coming home each night knowing what waits for him.  An anxious Kiddo and wife combo. I must be a really good cook or something. 

But I've been in this place before and I will surely be there again. I guess what I'm trying to say is "Yeah, stuff is a bit shit right now but I'm hanging."  So if you find yourself thinking the same right now, know I am right there with you. 

#TeamQuirky