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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 

Tuesday, June 26, 2018

You can miss so much.

I was tooling around on Twitter this morning (@FrenchFryInc) and this tweet caught my eye.

"How do you help a friend whose child just got an Autism diagnosis? All I can do is speak about my personal experience and listen to her. Any advice?"

I was quick to point out to her that she pretty much answered her own question.  Make sure the newbie mom knows your thoughts are just that, yours. Plus, listen to her. I think she knew those were both good ideas but also wanted to do extra.

Which is something I can totally get.  Long before this blog and being "Mama Fry", I was pretty open on my social media that I had a kid with autism.  So every now and then a former classmate of mine would message me with "Welp, we just got diagnosed and...yadda, yadda, yadda, autism, etc..." I found myself simultaneously wanting to hug them, high five them, pour them a drink and drop all the knowledge and information I had on them at once.

Because I had been there. I knew how scary and overwhelming it was. I knew that what it was like to have a love/hate relationship with Autism. I knew that playing Dr. Google was a REALLY. BAD. IDEA. I knew how to butter up a receptionist at a local doctor with a long waiting list to get your kid in just a little sooner to see them. I knew how it would both bring you to your knees again and again to read all those reports the "experts" wrote on your kid. I knew how it would lift you higher than a mountain to see your kid prove them wrong.

I knew that sometimes a good cocktail could be made with Kirkland Signature Vodka and some Crystal Light drink mix in a Lighting McQueen cup. I had developed a very unique skill set.

But if there was ONE single piece of wisdom that I could narrow it down to. One mantra to repeat for now and forever it would be this.

Calm the Hell down or you are going to miss so much.  

You will never get the do over you are craving. All of this will be gone in a flash. Suddenly you will be me and you will realize that you have missed so much.  You don't get this back.  Yes, some of this you wish you could have skipped all together.  (Like the whole little to no sleeping thing.  That can fuck right off.)  But wishing he was little again and we could have at least tried some of the things I was so sure he could not do, I'd give anything to have that chance.

I see these newbs writing these gospel long descriptions of what their kid is doing or where they are at and I'm just like "Yeah but can't you just see them as 3?"  Cause being a "threenager" is a very, very, real thing. No matter what the neurology.  Let me tell you something, the real mark of the Beast isn't 666. It's muthatruckin' 3. Yeah, autism has behaviors and behavior is communication but sometimes your kid is just being their age.  Just chill on this.  Trust me on this one.  Even though 3 can be evil, it can also be damn cute.  Don't miss that. Before you know it you will have a great big old man child with hairy legs, as tall as you, and shoes bigger than your own.  Enjoy each age, each year,  even when they resemble Satan on a bender.


This isn't a Netflix series. You don't want to binge this stuff. Just enjoy each episode and side of fries.










Monday, May 21, 2018

Autism by proxy.

Today I had my annual mammogram. A month later that I was suppose to because once again, even my boobs get to feel the effects of autism, anxiety, and meltdowns.

I was a good girl and made my appointment as usual. I don't mess around with missing the lady bits doctor.  I could lose a limb and I would simply stick it back on with duct tape under the excuse "Well the Kiddo has OT later and my husband can't take off of work to take him."  Killer cramps and hormones, I keep those bitches in check. Plus, it was a trip the gyno that first made me face the reality of my own mental health needs.  You can read about that here.

But what happened? Kiddo left his mark on me. Literally. Several in fact.  Three days before I was scheduled to go Kiddo had a horrible meltdown. There was no talking him off the ledge. No redirection I could give. It was one of those where I just knew "Well, this is what we're doing for the next hour or so." I was alone with him, so I got the brunt of it.  My arms especially.  Scratched and bruised so badly.  He kept grabbing my arms with a force so strong. Eventually I wound up locking myself in the bathroom to get away from him because he was hurting me. I found myself calling my husband at his job and asked him to come home, which luckily he was able to do.  In the time it took him to come home, we had a brand new hole on one of our walls and the Kiddo broke the door to the bathroom trying to kick it down to get to me.

What I did not know till much later that night as I was getting ready for bed was the number of marks he left on me.  Some of which were clearly hand marks. You could see where his fingers gripped me.  I was a walking bruise. It wasn't till the next day when I got my phone call reminder about my annual mammogram coming up when I realized "Oh Shit, someone is going to see all this!"

I could easily hide the damage with shirts but during a medical exam where you aren't weren't anything above the waist, yeah, that wasn't happening.  How the heck could I explain it?  It wasn't just one or two marks. It was a crap ton. It was the kind of bruising where you might ask a person "Where you in an accident?" or worse "Who did this to you?"

Now please tell me, how the Hell am I suppose to tell someone it was my child? Especially someone in the medical community. Let's also remember, Kiddo is my height. He's got man hands now.  So these marks weren't small. I either tell them my kid did this and have to deal with all those questions and a possible phone call to child protective services.  Or I say nothing and have them assume I was assaulted or maybe something terrible like my partner or spouse had beat me. 

I found no other choice that I could make other than to call up and pretend to be sick and reschedule. I purposely made it a month from original.  Plenty of time for my arms to heal but also hoping that I don't wind up having more added to them.

We got lucky. He hasn't had a meltdown since that day.  My arms healed. I was able to go and get the tatas tested.  No weird questions or looks. Just the usual chit chat with the tech about nothing special while we both pretend she's not shoving my boobs between to two cinder blocks.

It's one of those things where it just feels so surreal. I'm all about advocating for my Kiddo and autism but there are some things, where do I even start?  How do you explain in a sentence or two that your child injured you and that's a totally normal thing for it to happen in your world?  I'm not looking for sympathy about it. I just want to be able to share what happens in our lives because I'm really, really, fecking sick of not talking about certain things.  People want the shiny rainbows of autism but it's not always something cute in a sound bite that you can share on social media and feel like you did something because you shared it.

I'm never going to be one of those people that tape their kid's meltdowns and puts it on the Internet under the guise of "awareness" but I'm sure as shit not going to keep quiet about them.  Guess what? When he has a meltdown, we all do.  One of my pals who's an autistic adult once told me "You get to be autistic by proxy." You know what? He's absolutely right. Here I am with injuries that I got during a meltdown that I don't even know how to begin explaining to someone outside of this world.  Geez Kiddo, if you feel this cut off from the world with not being able to express yourself, it's no wonder how mixed up that makes you feel all the time.

So yeah, don't tell me my world isn't ruled by Autism because in my many years of experience this is just one more example of how it is.

Life with the Kiddo. Get on board or get left behind. 



Monday, April 23, 2018

Who he is.

"When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I'm meant to be, this is me
Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me"


This is Me from the The Greatest Showman Soundtrack


Kiddo's school wanted him to wear this Autism Awareness fundraiser shirt last week. Everyone was suppose to "Light It Up Blue" and all that jazz. (Don't come for me folks who got a beef with that campaign. It wasn't my idea. I am merely reporting the facts for the context of this little piece, m'kay?)

Did I mention that Kiddo goes to a private school that is strictly for students with autism? So basically they wanted the kids to bring awareness to the fact that they all have autism. Which I guess, in a warm and fuzzy Kumbaya kind of way they could bond over. Or it would serve as a reminder to the staff that are all trained to work with autistic kids that these kids in the school strictly for students with autism have well, autism.

Okay, let's just admit this whole event is kind of strange but whatever. They're doing it.  It's April. We're suppose to dial it up a ton with the Autism.  Despite how this month often just leaves me befuddled, I dove right in.

I handed him the shirt in the morning and said "Okay bud. All the kids are wearing this today for Autism Awareness" and it struck me once again, does my kid even really understand that he has Autism?

It's no secret in this house. It never has been. We have talked about it quite openly but I still wasn't sure if he even knew what that meant.  With his intellectual disability to boot, a serious conversations about neurology would not be as easy as our usual back and forth chats filled with our movie script quotes and tons of inside jokes that only we understand.

I said to him "You have autism. That's what makes you, well, you!"

And I got a reaction that pretty much can be summed up as "Whatever".  In my head though I am thinking "Is this a big deal? Should I make it a big deal?  Yeah, it is a big deal. If anything, for his safety I need him to be able to say "I have autism" if anyone asks him. He needs to know his identity!"

I said to him "Say it with me. I have autism!" and he repeats it. Kind of quietly. Kind of unsure of the word. I say it again and encourage him to say it again with a big old smile on my face. I want him to know this autism thing, this is a cool thing about him. I want him to own it.  He says it louder.  Still not as sure.  The word, I can tell, still seems different to him.  While we might have been using it all around him, he sure hasn't been.  This might take some time getting use to a new word to use.

This is where I then think "Does he know what it means to have autism?"  More importantly, "Does he even care?"  Life with the Kiddo is pretty clear for a lot of things. If he likes something, he LOVES IT!  If he doesn't care, let's just say his resting bitch face is pretty stellar.  (Yes, he takes after me. How did you know?)

Since we are also firmly into the teenage years and attitude, I'm not sure if he really gets all the parts of it based of the fact that I get the "IDGAF" face about ten times a day as is for all other kinds of conversations ranging from "Did you brush your teeth?" to "Would you like to watch a movie with me?" So I have to factor that into it too.  If there was ever a person that was unapologetic with who he is, it's my Kiddo. I love him for that.

Cause this is the autism at my house. This is him. I'm not sure how it goes at yours but this is what we've got.  I'm not sure how to fully explain it to him in ways that I know that he knows what it means.  He might know now but can't fully communicate it with me that he does or if he even cares.  I'm just trying to get the sentence in his head so he knows when to pull it out when he's asked.

This looks like a job for a SOCIAL STORY!!!!  (And maybe a showtune. I mean, there's showtune for everything, really.)


Observe the "IDGAF" attitude. Kiddo doesn't really care what your opinion is of him or if you even have one. He's a baller like that. 

Monday, April 9, 2018

How to NOT talk about Autism

I don't know about you but if I had a dollar for every time I found myself stuck in an awkward conversation about autism I could buy Kiddo his own McDonald's franchise. I don't actively go looking for these interactions but they come up now and then.  I'm sure you have had them as well.

Maybe it's at a family gathering with some well meaning in law. Maybe it's with the mom next to you at the "Back to School" night. Autism comes up and the person next to you suddenly has MANY opinions on Autism and is extremely vocal about how you are doing every thing wrong!  It's especially wonderful when there's an audience of people around you watching this interaction.  Some of whom are equally out of touch with the subject but see it as their chance to hop on board with all their crackpot theories.  Despite your best efforts, the conversation is going nowhere good.

This is when I find myself just standing there thinking "Why did I choose to sit next to you? Why didn't I ask you about your kid or just compliment your shoes or something. Ask about your job. Anything other than sit here and bite my tongue." 

So many of us find ourselves in these situations and we are so worried about coming off badly in our response.  We don't want to offend them or hurt their feelings but let me tell ya something, that's some bullshit. Here's why.  They surely didn't think that far out when they made their hurtful and/or clueless statements. They didn't remember their manners or if it was the right time or place to talk about an already sensitive subject.  For whatever reason, they are not picking up on your social cues and body language that this talk is going off the rails and you are very uncomfortable.

Perhaps they are the ones that need the social skills training more than your kid.

The longer we have been "Living La Vida Autism", the more I have no problem stopping these conversations. I'm not saying you should get up and start screaming at them about how they are wrong wrongness sitting in a box of wrong but I have no problem stating "Thank you but that information in incorrect. I'm sorry YOU feel that way about Autism. That being the case, let's not talk about it. Seeing as it's something we clearly have very different opinions about."   Yes, you can say that to them. I am living proof you won't die if you do.  Look at me, blogging about, all willy nilly.

And that is usually all takes for them to realize "Oh shit" and shut up about it.  Or they stop talking to me. Whatever.  We're we gonna be besties? Probably not, so screw it. Why should I have to listen to a ton of Autism Myths that further promote stereotypes just because I'm afraid a person I can tell is a bit of an ass might get upset if I say "No, I'm not listening to this.".

And yes, I am aware that sometimes these conversations come from people that are also parents of autistic kids. Guess what? Telling them you would rather discuss something else is entirely okay! Seriously, I bet they would like to talk about something else other than Autism. Look deep into their eyes (or not) and just say "Hey, it's me. Same team here. Let's give ourselves a break and not talk about Autism for a moment."

and Dude, if they still want to go on and on and Autism and Autism about it, CHANGE YOUR SEAT. I give you permission to do so if that is what you are seeking.

And BUH-BYE. 


 You want to NOT talk about it? Come sit by Mama Fry. I'll be happy to talk about anything else.


Saturday, March 24, 2018

When we crack

I can't say this life gets harder but it certainly hasn't gotten any easier.  Every age and phase brings it's own set of issues and complications that we somehow have to make work for him and for us.  I wish I could say I  handle this life with grace but sadly often I fail. Especially when new behaviors pop up.

We don't even realize how good we had it until we are in one of those brand new phases and I'm looking wistfully back at them. Thinking about them like they were the love that got away while humming Cinderella's "Don't Know What Ya Got Till It's Gone."

 
 Power ballad time! Get your lighters up. You see kids, in olden days we didn't have cell phones to hold up in concerts and were forced to use cigarette lighters. Which we held by our very highly teased hair sprayed to the gods heads and it's really a wonder we didn't all die in a great big ball of fire at a concert.  

But I digress...

The thing is, these behaviors and challenges, they can grind a gal down. Seriously, this autism stuff can be really, really fecking hard.  Since it doesn't really ever let up, how do we keep going?  I'm not trying to be deep by asking a rhetorical question here. (Honestly, this is a blogger that frequently quotes hair bands and drag queens. How deep can I be?)  I just don't know the answer and it worries me that when I think we have a steady grove going that we can manage, it goes right out the window.  Probably following something that the Kiddo threw out before it.

What are we suppose to do when we crack...

The logical go to is to take a break but please someone explain to me how I can do this. We have no sitters. No respite still from the state and I don't see that changing anytime soon unless a whole lot of people either move out of the state or die.  We have family that can help from time to time but they also have their own families and their own lives and we can't always expect them to help out.  Plus when things with the Kiddo are rough, I really don't want to anyone else having to deal with it.  I know. I know.  That's my own issue but I just don't feel right leaving him with someone when I know it's one of those "because Autism" days.

 I also feel so incredibly guilty being frequently burnt out by this all that I don't even want to admit it that I am.  This is why I often don't even bother asking for breaks. I literally don't feel like I deserve them.  I feel by asking permission to take one, I am failing him.

And look what I just wrote!  "Asking permission". For a freaking break. That's insane. Why do I feel like I even have to ask. There are plenty of people that just know they need one and take it. Who am I asking for permission?  I guess myself more than anything.

And another thing, (Yeah, I need to rant a bit on this one.) I will post this and many will say "Screw anyone that complains.  They don't get it.  They must not be parents." While I will agree with this to a point, I also know there is a good chance an autistic adult will read this and take it completely in the wrong way.  They will think I am talking about them.  They will think I don't love my Kiddo. They will take it that I am selfish.  They will tell me to "listen to autistic people", which I am down to do but I've been blogging for six years now and not one of them has told me what to do when I feel like I'm going to crack. Not one of them has offered advice on how to regroup.  I keep listening but when it comes to the topic of parental burnout, not much is said. By anyone of any neurology.   We just get crapped on to do better but not how.

Oh wait, sometimes I've been told it must be something I am doing to set off my Kiddo.  Now look, I totally jam with that whole "behavior is communication" thing.  I am just really tired of being told online at every single turn it must be something I've done.  Trust me, I am trying.  Constantly.  I accept a lot of changes in my life because of autism. Multiple times a day. If I am totally at fault for everything that happens here, feel free to take him off my hands for a couple of days.  Cause I am running out of ideas. 

Now pardon me while I go off to hide in the bathroom to play Candy Crush while listening to 80's hair band power ballads.   Right now, that's my go to for when I feel like I'm going to crack.  Maybe you could share what's worked for you.

Sometimes the dog pitches in and keeps him busy for me.