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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.  

Monday, March 5, 2018

Token Boards

We are having some homework drama. He totally can do it. He's just choosing not to and I can't tell if this is an Autism problem or a Teenager problem. More than likely, it's a hellish combo of the two. Ain't I lucky? #Blessed

Something has happened in the last few weeks where the Kiddo wants NOTHING to do with homework and I cannot for the life of me figure out why. This is a child that up to a few weeks ago would do it as soon as he got home from school. (Which as a former homework procrastinator myself, I did not understand how he could be related to me.) We've now hit an area of not just not wanting to do it but added gobs of behaviors that he sprinkles all over the experience. Crying, yelling, screaming and grabbing at me the entire time and for a good half hour after the actual work is done. Good gravy!

Clearly something needs to be done and I brought up to the teacher. She wasn't by any means giving him a lot or anything that was beyond what he could do. That's one of the most challenging parts of this. He's totally capable of it. A few weeks ago he would actually say things like "YAY! MATH!" when pulling out his worksheet. (Again, I almost question if I was given the right baby in the hospital.) His only struggle was the handwriting part but with a few prompts not to rush and take his time, the whole thing would be done pretty quickly and life at the House of Fry would continue right on schedule.
She decided to give him him some super simple homework. Stuff and concepts he's long mastered. She didn't want to get him in the habit of "Throw fit, then no work." which I agree with completely. If it was easy, maybe he would just mellow out and get into the groove again. So far it had been working. I was letting her know that there was less drama and he was just getting it done. She started sending home more challenging work but work he could do none the less and BOOM! It came to a Mac Daddy header last week over four freaking Math questions on a single worksheet. A clusterfuck of a meltdown and all aimed at me. FUN!

So, back to the teacher with a "HELP ME! I cannot be drinking by 3:30 PM every day or the neighbors are gonna talk." email and this was her reply.


"Have you tried a token board?"



Oh sweet Mother of Mercy.
I can't even believe I'm reading these words again but here we are. My Kiddo is 13. You want to talk about been there, done that, and threw the freaking token board out the window because DUDE, we have done that and then some by now. So let me tell you at why with where we are with autism and this journey and all that warm and fuzzy yadda yadda yadda B.S. why this isn't gonna do squat.


Come sit down. Let me break this down like Queen Bey.

Here's a math equation for it. Kiddo's inability to be focused on a long term goal PLUS having next to nothing that actually motivates him because even "Window Fries" don't have the same value as they used to when he solely existed on them as toddler EQUALS The Kiddo giving ZERO FUCKS about a token board. He just doesn't care. Period.

Look, I get that token boards/reward earning works great for some kids but there gets to be a point where this classic move just doesn't cut it anymore. Especially after years of various behavioral approaches being done on the lad. He knows your tricks and he doesn't care how hard you worked on your laminate Velcro tokens that you made when you weren't getting paid over a weekend. I get it. Teachers and therapists work so hard with our kids and I am so grateful that they do because they get paid a shit wage and work all the freaking hours of the day. But WHHHHHHY on God's green earth is this the only go to ya'll got?




I kind of wish teachers would just say "Well, shit, I don't know what to do either if that doesn't work." Let's all just be in that feeling together. It's okay. Sit right next to me. I'll share my fries with you too. Seriously. I'm not saying I know more than you. Not in the slightest. I have ZERO clues just like Kiddo has ZERO fucks about those damn tokens and a timer. That's why I'm emailing you all the time crying for help.

And at this rate, I have to be real about his future. Part of me wants to just say "Okay, we're just not doing this homework stuff anymore." and insist it be added to his IEP. The other part of me really likes this teacher and she's figured out ways that work with him before. We email some more back and forth and I think we might have something. I explained why the token board idea doesn't jive here and that maybe we could focus more on his typing skills since it's when he actually has to write the answers he loses his shit. We have all the products that Apple makes and plenty of WiFi. (I mean clearly it's a strong signal as I'm emailing the teacher all the freaking time.) We're moving on to stuff he can email to her and I'm hoping like Hell this might be the thing that works.

Cause much like the Kiddo, I too give ZERO fucks about a token board and I'd rather focus our collective energy to something that might prepare him more for the future that is rapidly approaching.

Fingers crossed! Let's hope this works.

Monday, February 26, 2018

When they leave

People can really suck when it comes to all things autism but you probably knew that already.  The worse thing is when they leave. Parenthood stuff is tricky enough.  Sprinkle some autism on to it and watch what happens. People that were a constant in your life start to scatter like roaches when the lights get turned on.  If you are sitting here reading this and think "That's not true.", you are one lucky person.

Because I haven't met an autism or special needs family where this that hasn't had this happen to them yet. So much runs through your heart and mind when they leave.

When they leave you don't even realize right away that they are gone.  It's such a subtle slip into a new reality.  You find yourself very overwhelmed with Autism, therapies, IEPs, school stuff, and just life in general that you find yourself thinking "Hey, I haven't heard from "So and So" in ages." If you are like me, you blame yourself for that.  That you got so wrapped up in all things Autism and your kids that you killed that friendship.  The invites dry up.  The phone calls and text messages don't get returned.  You kick yourself for saying "No" one to many times for gatherings "because Autism".  You find yourself going over conversations in your head where you went on and on about Autism and you are kicking yourself for not just shutting up and asking about them.

Of course, it's not just us screwing it up. I'll put some of this on them too. When they leave because they don't know what to say to us, that kills me. I don't need you to know what to say because I don't even know what to say. I don't need you to "fix it".  I just need you to be there.

When they leave because just being in our presence is uncomfortable for them, what the hell is that? Do they think that they are are going to catch Autism like a cold? I've notice this happen with people we know and even out in public with perfect strangers.  They notice, they give us "that look" and they suddenly get the Hell out of dodge, or the playground or to another table at McDonald's. You think I didn't notice? Trust me, I did.



I think the worst part when people disappear from your life with Autism is that they are usually the very person you want to call to confine about this happening to you. You still want to lean on them because you are hurt even though their disappearance is what hurt you.  Does that make sense?

The longer we live on "Autism Ave", the smaller my circle of friends has become and 90% of them usually have a #TeamQuirky kid of their own.  So they get it if it takes me five hours to answer a text message or have to cancel plans again "because Autism".  My Kiddo is rapidly growing and he's no longer the tiny hyper toddler with the chubby cheeks and big blue eyes whose cuteness could bring about a few chuckles and a smile.  Now it's "What's that dude doing over there scripting from Blue's Clues?" Maybe because so many leave, they forget these kids grow up to be Autistic adults.

And I'm also sure some left simply because I probably pushed them away.  I know my boundaries with stress but I am really shitty at expressing that I am at my limits. I use sarcasm when I should have used compassion. I rolled my eyes when I should have just listened and give the person some of that eye contact that BCBAs are ALWAYS going on about.  I lashed out and done the worst offense, tried to top their pain with the martyr Olympics.  "Oh, your kid talked back to you? Well I'd just be happy if mine could talk at all!"  Ugh, why do I do that?  Ain't no trophy for it, so it's just fecking stupid.

And if you made it to the end of this post, I'm glad you didn't leave. So thank you for that.

You want to leave all this?  Your loss. 


Thursday, February 15, 2018

To Explore Strange New Worlds: A book review.

Full disclosure, I actually don't enjoy reading books about autism. I know, I know.  Very ironic seeing as I write about it a lot. It takes a certain something special to make me want to do so.

Full disclosure, I married a Trekkie. So when I was approached to read and review Elizabeth W. Barnes' new book "To Explore Strange New Worlds: Understanding Autism Through a Star Trek Lens, well, you have my attention.

You don't spend 17 years with a guy without some of that Star Trek rubbing off on ya. 


Autism and Star Trek. Now if you are a fan of the various series, it kind of makes sense.  There are several characters on the show that display characteristics similar to ones that autistic people display.  Spock from the original series is usually the first one that comes to mind for most people. However, there are also many different examples of diversity, inclusion, and acceptance displayed throughout the various series and Ms. Barnes leads you through it.  Even if you are not a super fan, it's still a fun read with plenty of background information on the plot lines so you can follow along.  (And lots of direct quotes because scripting isn't just something our kids do! We do it too!) 

What I loved about this book foremost is how the author and her child really connected through a mutual love of all things Star Trek.  If you are an autism parent, you know once your kid likes something, you are about to become an expert on it too.  You also know if the thing they like is something you love, it's a bonus!! I think it was very smart of her to take this mutual love and run with it to teach him various things about the world and his autism in general.  That's just solid parenting advice right there. Using what they love to model different challenges they face in life. Ms. Barnes even points out that are many different types of TV shows one could use in a similar way.

She includes a very extensive and detailed list of episodes that cover a wide variety of topics such as learning to read facial expressions and social cues, bullying, anxiety, communication, difficulty with transitions and changes, meltdowns, stimming, and intense interests and fixations.  She also includes talking points and questions for each one that you could use to have a conversation with your loved one with autism to go into more detail about each topic.

All in all, an entertaining way to look at autism, neurodiversity, and relationships.  If you are looking for something less "Sciencey" and more "Sci Fi", this might be the book for you.  Order it here or through your favorite book store.  Make it so!

Mama Fry's Book Club for those who spend a lot of time in therapy waiting rooms pick. 


(Full disclosure. I was provided a copy of this book and compensation for my time by the publisher. My views of it are my own.)