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Tuesday, June 21, 2016

The reality is...

I didn't want to write this one but I wouldn't be keeping it real if I shade over the stuff that's not so pretty.

Is it wrong to look at a bruise and think "Gee, that would make a nice color lipstick."? 

This is my arm. The bruise came as part of Kiddo's meltdown of "Daddy Fry" leaving the house for a few hours on a Saturday. Kiddo is the president of the Daddy Fry fan club and he wasn't to thrilled to be left behind with boring old Mama Fry. So he let his displeasure be known. Unfortunately, how he does that leaves a lot to be desired.

It starts with crying and screaming for his wants. One might even think, "Oh that's just a good old fashioned temper tantrum."  Don't give into that, so I didn't.

This is where autism comes. This is not just naughty or spoiled behavior we are dealing with here. This is "The world is ending. I don't know how to handle this." desperate attempts of self soothing that often lend themselves to looking more like a wrestling smack down and less like a mom patting her son on the head and saying "There, there. It'll be okay."

His favorite thing to self soothe is to get sensory input. Mainly by slamming/digging his forehead and his chin into my face while grabbing at my arms. With the Kiddo clocking in at ninety nine pounds and being 5 foot 1, it hurts. Badly. I try to "defend and deflect", like I learned in my old restraint training days back when I used to be able to leave autism behind me after I clocked out with my time card. This time he cut under one of my arms and leaned in with all his weight with a vice like grip. As he was doing it all I could think was "Sonofabitch! This is gonna leave a mark.", and I was right. It did. One hell of a big one on my upper arm.  Geez, Kiddo. You couldn't do this to me during long sleeve season? It's quite visible for all to see.

Which leads to fun conversations when folks notice it.  (Did I mention I am Irish by heritage ergo, pale AF. As the kids say.)  So it really, really, really, stands out.  "Oh my god! What did you do to yourself??" is what I keep hearing and that leads me to this moment.

The reality is it was my twelve year old son. It wasn't be accident but it wasn't premeditated either. The reality is while I will be the first one to say "A tantrum isn't a meltdown.", it's doesn't mean that they can't turn into one.  The reality is I'm not going to say what happened because they will want to offer unhelpful opinions, theories, and suggestions on what I should do to him without having any real idea of what the reality of our situation is on a day to day basis. The reality is when I do tell select folks because I know they get it, it's merely to get a much needed pep talk to get through stuff like this. I know they know I'm not looking for an instant fix but at the same time I don't want to repeat this even though it sadly will happen again.

The reality is the Kiddo keeps looking at it and pointing/poking it with his finger. He knows he did it. He knows I'm not happy about it. I don't lie about how I feel about it to him though. That would be completely unrealistic of me to pretend it was nothing. I know he feels remorse for it. Right now it's serving as a visual reminder to us both of all the work we still have ahead of us.

So I will redirect, redirect, and redirect him to find other ways to self soothe that don't involve me looking like I just came out of a caged match. "Chin on the wall, Kiddo. Not my face."  Even though my face is apparently perfect for such input, I'm taking on those ways of self soothing on because the reality is that it's starting to look like plain old abuse.  While I love a red lip, red marks and bruises aren't working for me. Plus the future just keeps creeping up on us and this is no way to handle oneself. Ever.

This is the reality of our autism.  This might not be what you deal with and if that is the case, I'm glad. I wouldn't wish this on anyone. I'm his mom. I'm the one who's job it is to make him feel better but it doesn't make me his freaking punching bag.

Did I mention we're leaving for vacation soon?  The reality is I will be packing my corkscrew because it's gonna be a TRIP!

Wish us luck!

Monday, June 13, 2016

It was just a bowl of popcorn.

It was just a bowl of popcorn but it was so much more.

It was a step towards independence.

Friday was a tough one for us.  I woke up sick with a sinus and ear infection. (Yay me! I'm an overachiever.)  Kiddo was super anxious. I could tell he was headed towards a meltdown but I kept him moving and busy until the bus came. After that, it was out of my hands.

Two and half hours of sitting at the doctors for myself and then the pharmacy, I finally came home. I promptly laid down because I had a free hour and intended to rest while I could. Then I heard "Whiskey in the Jar", which is my ring tone on my phone. I opened one eye and peek to see who it was on the Caller I.D.. School. Well, that is never good. Another meltdown in class. Like a pretty bad one. One where I might want to start slamming back some whiskey in a jar because I am at the point with the Kiddo where I don't know what to do anymore.

I mean, I get it and luckily so does the school. He's leaving a place he's been at since he was five. Big HUGE change and transition to Middle School. Despite all the social stories, tours, and talks about the place, it's still the great unknown to him.  I knew we would see some behaviors with all this going on. I just didn't realize it would manifest like this. By this I mean, throwing furniture at school. Attacking staff that he normally greets with smiles, hugs, and high fives. It's breaking my heart. I don't know how to fix this. No one seems to know what to do either. It's a lot of "Well, once he starts the middle school and gets into a routine. He'll probably settle."  We all hope anyway.

He's not the only one freaking out about the great unknown here.  Is this a blip or a preview of more to come? I can't even wrap my head around this. How on earth can I get him ready for the world with this kind of behavior as a constant?  How can I make him be independent?  Despite my "I can never die" plan, I need to know this Kiddo can face the world.

So needless to say, I had a big old sobbing fest and pity party for one.  Eventually I stopped because I was already congested as Hell.  I didn't need to add to it. We would power through this. We have no choice.

But the doubts. There were still in the back of my head and they had set up shop. Moved in furniture. Painted the walls, hanged some pictures. They were there for the long haul.

The Kiddo also came home with a big surprise for me. It seems his teacher, correction, the whole school staff practically had ordered the #TeamQuirky shirts I sell and took a ton of pictures wearing them with the Kiddo.  She made a nice photo collage for us and framed it.  Cue more ugly crying tears and heaps more guilt about his behavior. They get him. They know this isn't him. They love him like I do.  God dammit, I'm crying again just typing this.

Needless to say, by end of the day I was pretty much spent. Despite being cheered at the sight of the Kiddo running around holding this picture to put in his room, I still licking my wounds. Feeling sorry for myself. Worrying about the future for the Kiddo.  I did the mature thing and made one with my couch and the TV remote cause I can't even drink on these damn antibiotics for my various infections!

And then the Kiddo swaggers in the family room.  One hand holding a cup of juice with a straw, the other a bowl of freshly made microwave popcorn. My husband had been sitting beside me the whole time. He didn't help him make it. I didn't help him make it. I'm pretty sure the dogs would have steered him to just take out the cold cuts for a snack if they could have helped. So it meant the Kiddo did it all on his very own.

Because when you settle down for your 5037504th viewing of The Polar Express, you need some popcorn. Mom and Dad are busy, so you'll just do it yourself.

I haven't taught him what to do but he's watched me countless times do it. He even went full foodie on me and sprinkled Parmesan cheese on top!

It was just a bowl of popcorn but it was also a sign that maybe, just maybe we would get through this.

Making popcorn counts as cooking a meal, right?  I mean, it sure was my meal in college many a night.  




Friday, June 3, 2016

Neurotypicals kids are weird.

The Kiddo had his 5th grade concert last night. Not gonna lie. Due to his recent multiple meltdowns and behaviors, I was Hella nervous. Not only would be going off the night time routine by doing this, he wouldn't even be performing in his school. With the number of people coming, they moved it to the high school. So let's add brand new environment to the mix of anxiety with a side of nerves. Oy vey!

About three hours before we had to leave, I get an email from the school saying the Kiddo had been written up for behaviors on the bus from the day before. Which is news to me considering the bus barely slows down to boot him off of it each day.  Are you freaking kidding me???

So I walk out to the bus to meet it as the Kiddo is coming home and ask the driver how he did today on the ride to and from school. She replies "Great!".

Me:"Yeah. How about yesterday? Did you follow the Behavior Plan?"

SILENCE! Complete silence. From both the driver and aide. They literally said not a single word, which answered it all, didn't it? Because why follow a Behavior Plan when you can just write him up for having the nerve to keep acting autistic. Heavens to the Betsy, when will I give a that boy of mine a firm talking to to clear that up!

Me realizing I might need my own behavior plan at this point grit my teeth and reply: "Well I guess I'll be calling the behaviorist to come ride the bus with you guys again. BYE!" and walk away.

Needless to say I'm pretty sure at this point that the performance is going to be dicey. I mean, what the heck is going on plus it's not being addressed when it actually happens. UGH!

But dammit, Kiddo loves proving me wrong. As soon as he reported to his class that night, he was over the moon about it. Keep in mind a lot of his behaviors this week at school have been during the time of the choir rehearsals. Something just clicked though. He knew that he was now "on" and he did great!  I mean there were times his #TeamQuirky was showing with some flappy happy dance moves while singing but I chalk that up to watching too many musicals with Mama. Standing still to sing is NO FUN!

He even had a speaking part at the end wishing the everyone there a good night. Just waltzed up to the mic like it was no big deal in front of a crowd of hundreds. Yes, it was safe to say he really tested my waterproof mascara as my eyes sprung a leak.

In fact, there was a moment when I started looking at all the other kids there. Most of them were those mythical "neurotypicals" you hear about in books and TV. ;-) Yes, I was doing the worst thing I could be doing.  Comparing him to them but hey, I'm human. I make bad choices.  I also couldn't help but notice that a lot of his "typical peers" that around him to help model "appropriate" behavior aren't perfect.  IMAGINE THAT!!!

I saw nose picking, elbow shoving each other, one of the girls unclip her hair and restyle it, and most of them at one point or the other staring at the ceiling.  One of the best moments for me was seeing a young girl in the band pit kick off not one but BOTH of her shoes and start to pick at her toes while balancing her flute on her lap.

It was then it sunk in. Neurotypical kids are WEIRD.  My Kiddo suppose to learn from them?  Sweet Jaysus, he was better behaved at this thing than most of them!

Does this solve all the current issues we have at the moment with the bus, WTF Wednesdays, and anxiety? Nope but it sure did make me feel better.  Made me feel like we could get through all this stuff. Hey, he actually keeps his shoes on when we go places. We're already ahead of the game!

Of course, this morning he had a big honking case of anxiety. Eager to start his weekend. I had a bundle of nerves because I had to make multiple phone calls about him today to his case worker, the bus company, and the principal. I'm not thrilled about it and it's going to be a lot of work trying to figure out what to do. I did make a lot of headway and he managed to get through his day too.

Seriously, both shoes kicked off while in front of a crowd of people in the middle of a show. Young lady, I don't know who your mom is but if she saw that like I did, I'd like to buy her a glass of wine. She could probably use it. :-)

Happy Kiddo at the show makes me a Happy Mama! 

Tuesday, May 24, 2016

"I just want to be able to have a conversation with my kid."

 The longer I raise him, the more I realize that having a Kiddo that can talk doesn't mean one that can successfully communicate.

As the school year is wrapping up, old behaviors are coming back. With a vengeance and I would not be keeping it 100% if I didn't admit that they are really, really, really, working my last frayed nerve. We had a time of "WTF Wednesdays", as I called them. The school did the whole FBA workup. We observed things from every and all angles only to really just figure out he just didn't like the schedule that day. He also wanted to rush through the school day to get music therapy which is after school and his favorite after school activity to do. Behavior plans were written and carried out and with time the behavior started to fade. HOORAY!

Or so we thought, because it's like someone flipped the light switch on this kiddo and we are back and this time it's personal. Seriously, Kiddo went full on Spinal Tap and cranked his behaviors to "11". (If you don't get that joke, we can't be friends. Go watch it.)  He's now gone past the usual screaming and crying to full on meltdown. (Now with new and improved throwing of furniture and classroom materials!)

It's also from the minute he opens his eyes on a Wednesday morning.  Walking on eggshells getting him ready.  Lots of crying and whining at the bus stop and me just hoping like Hell I don't see the school phone number on the caller ID. When he returns, he's better because he's about to go to the thing he likes.  By Thursday, he is a 180 Kiddo.

Today he decided to beat the holiday meltdown rush by starting his "WTF Wednesday" on a Tuesday.  It's like one of those Preview Sales before the One Day Sale at Macy's.  (Which, did you ever notice they do those once a week? Oh, I could use some new sandals. Hey, maybe I could swing by there and....STOP!  Focus Mama Fry!)  I don't know what it was about reading about all this in his notebook today that got me down but man, it just did! Like sonofabitch!  Here I was just hoping we could just coast out those last few "WTF Wednesdays". Power through them.  Just get to middle school, which starts in summer.  We'd be in a new place, new routine.  We could kiss the "WTF Wednesdays" goodbye.

But autism had to be like "Naw, Girl. We may like a routine but we are not always predictable!'

I sit here thinking "Is this going to slowly spread to taking over more of his week at school? So more and more of his last weeks of school will be nothing but dealing with this.  Is it because it's the last weeks of school that he's doing this? How do I get him to understand that we all get he's feeling anxious? How do I get him to say what's wrong?"

Ask him what hotel room number we stayed in five years ago, he can tell you that.  The birthdate of a dog that passed away four years ago, that too. Rattle off the start of any scene in The Polar Express and he will out act Tom Hanks recreating it line for line in front of you.

Ask him "What's wrong?" He can't tell me.

I just want to be able to have a conversation with my kid.  It's as simple as that.

I'd probably ask "Watching lawn mowers on YouTube. Let's start with that. What's the appeal?" 






Wednesday, May 11, 2016

Manners Matter

Two times on Mother's Day I got a "win". Neither of them were grand gestures or big productions but there was no doubt in my mind something we are doing is working out.

Win Number One. We ran out for bagels in the morning because one of the benefits of getting up at the butt crack of dawn on a weekend is getting fresh, still warm from the oven, bagels. Added bonus, because we live at the Jersey Shore, in the summertime we can do some fantastic people watching as we see Bennys (aka what we call the tourists)  who are on their way home from where ever they spent the night before in last night's club wear outfit and smeared make up. It's highly entertaining!  But I digress. 

Kiddo was sitting at the table and was getting kind of bouncy hyper howler monkey loud and I shot him a look and said "Hey!" and he immediately stopped what he was doing and said "Sorry!" and went back to eating his bagel.  So he not only listened to a non verbal BUT boy was my look LOUD request but he said "Sorry" to boot. Reading social cues and correcting his behavior while apologizing! Hot Damn! 

Win Number Two. As it was Mother's Day, the theme of "I'm not cooking squat" continued.  Out to get pizza we go.  Now as this requires more sitting and waiting for food and we had already done this morning, the Kiddo was having NONE. OF. THAT.  Waiting again? Oh Hell no. He is not about that life.  So he was getting antsy and ornery but we managed to kill time and the pizza finally showed.  As my husband and I were just about to take our first bites, the Kiddo declares loudly "I want bathroom!!!"

Really Kiddo? Really?  You couldn't have asked to go while we were killing time and waiting? And we both know he really doesn't have to go because the Kiddo is much like a dog and he likes to mark his turf everywhere we go that has a bathroom he can use. But there's no way we can take that chance and say "no" cause that will be the time he has an accident and off my husband goes to take him. We're both annoyed but what else can you do?

They come back and the Kiddo wants to get back into his seat. The place is crowded and we're packed right next to another full table. The Kiddo normally would not think twice about climbing over anyone and everyone to get back to his seat. He doesn't need you to move. He'll just happily flop over you. But he pulled out surprise number two. He actually said "Excuse me!" Color me shocked! So I and the lady at the other table scooted on over so he could squeeze on in.  He was totally aware of his body and our personal space and used manners! Heavens to Betsy! Who is this Kiddo?

So in the grand scheme of things, does it mean all our worries for the future are gone? NOPE! Not even close. It does make me feel slightly better that some of all this hard work we've been doing is paying off.  By no means are all the problems solved and I'm sure I will still have to remind him to use his manners again and again and again and again.  It's a start though. I'll take that. :-)


He sure didn't share any of this pizza though. Truth be told. Neither did I. ;-) 



Tuesday, May 3, 2016

Shame

Let's talk about something cheerful and uplifting, shall we?

I worry about the Kiddo. A lot. He is creeping up to twelve soon (EEK!) and while he doing some things that would would expect a twelve year old boy to do, he is doing so many other things where the average person is like "Wait...what with this???"

And I feel a lot of shame over noticing the stuff that just doesn't matter. So that makes me feel like even extra shameful that I am embarrassed by some of the stuff he does or is into.

And I am a proud member of #TeamQuirky. I just should not care what others think but I also know the world sure doesn't work that way all the time.

The last six months or so the Kiddo has become down right obsessed all over again with all things Blue's Clues, Thomas the Tank Engine, Backyardigans, The Wiggles, pretty much the whole Noggin channel era of TV. Thanks to YouTube, those shows never die. I'm not sure why at this age he's ALL IN with this stuff. It could be that he finally has the language comprehension to follow it. I'm happy he enjoys watching it. Certainly gives me a twenty two minute break if he's deep into an episode of Blue's Clues trying to solve the mystery before Steve ever does. He'll even play pretend with his own mini notebooks around the house recreating the episode, line for line. It's like living "Murder, She Wrote."

Steve, you're going places. College however, isn't one of them. 


But outside of the house, yeah, that's when Shame pops up. Cause he's deep in his world of cartoons and expecting all around him to be exactly right there with him.  The average kid his age is not.  Even the most understanding adult we encounter usually isn't ever aware of what he might be scripting about.

And this is when I see how NOT ready for the world he is and I feel a ton of shame because as his mom, that's my job and my fault.

And here we are all these years trying so damn hard with him to get him ready and he so isn't there.

And I feel shame every time I have to act as his interpreter, explaining to all we meet what it is that he means. They hear him singing "Dorothy the Dinosaur" at the top of his lungs but it just means he's very happy at that moment and chooses to express it in song by Australians kid musicians, as you do.

And I feel shame every time I have to explain to him "Time and place, Kiddo. Time and place." because I find myself getting annoyed at him doing these things.  I want him to be himself but there are social norms.  Like it or not. As much as I would love to just sing all the live long day too, it's not how the real world works.

And I feel shame that I simply don't take a page out of the Kiddo's own book. I need to not give a crap like he does.

Does this look like the face of a Kiddo that gives a crap about what other's think of him? I think not. 


I feel shame about shame and that's when I start thinking "Shame is such bullshit." In situations like this one, it's completely worthless.

If I focus so much on what the world won't like about my Kiddo, I won't get to see it for the things they will love about him. I don't want to miss that. Shame makes you miss the good stuff.  I've already missed enough. I don't want to miss anymore. I won't miss anymore.





Wednesday, April 27, 2016

What's acceptable?

I'm gonna get right to the point here. There are meltdowns and there are tantrums and they are NOT, this bares repeating, NOT the same thing.

I think a good chunk of parents who have autistic children would agree with me on that statement. They understand that a meltdown is actually behavior communication in motion. Sometimes that motion is your kid deciding to test the aerodynamic strength of the iPad when the wifi goes out or screaming and covering their ears when they hear the vacuum turn on.

To those quick to say those reactions are bratty, naughty, selfish, rude, bad tantrums, I say Back the truck up. Aw Hell to the No! In fact I feel so passionate about this I decided to make a meme about it.

Did you all catch the bat was named "Hot Sauce"? All Hail Queen Bey! 


Of course, the majority of you got what I was saying here but because I put something on the Internet, someone(s) had to get offended by it. I mean, I expect that. In fact it's needed to help maintain balance in the universe or some kooky new aged mumbo jumbo like that.  Here's some comments that stick out.

"Are you going to be "Beyonce with the Bat" when they are grown and can't get or keep a job??? Need to be prepared for the real world and the real world won't tolerate meltdowns."

"Oh yeah. Flip out. Model parent there."

Cue the flurry of replies by folks who were on Team "Are you serious?" I appreciate you all having my back. I both live in awe and fear of you. (I really hope I never piss you all off.) One of you even replied with a single picture that said it all. This:

Dorothy Zbornak is my spirit animal.  How did you know? ;-) 


But really? First off, slow your roll if you think I'm advocating taking an actual bat to someone. Please, I'd break my nails and this Jersey girl doesn't do that. However, I will take a figurative one to knock out the idea I'm advocating my kiddo gets to do whatever he wants.  No way. Not even close.

Did you all miss the blurb I added where I stressed "BEHAVIOR IS COMMUNICATION!!" Let me say it again. BEHAVIOR IS COMMUNICATION!!!" One more time for those in the back in the cheap seats, "BEHAVIOR IS COMMUNICATION!!!!!!!!"

Let's get down to the "WHY" your child is doing something. That's the part we as autism parents can work on so we can figure out what triggers our children. What I am asking the rest of the non autism world is the space and the time to do that. That means, you are all gonna see some meltdowns.  Of course I know the behavior isn't the acceptable norm for society. I am trying my best to teach my son the skills he needs to handle what life throws at him.  Seeing as he is a child with communication issues, this is going to take some time. Help me to help you understand that you all need some patience and understanding or I am going to lose my ever loving mind. You make it hard to teach my Kiddo empathy and compassion when you won't even show it to us.

What kills me is those comments might have been left by folks who have kids with autism. I'm going to have to think that maybe they are so busy with the autism in their house that they have forgotten what autism is like in other homes. Yeah, that's what I'll have to tell myself here. See? That's me using some empathy and compassion on my part. Works both ways. ;-)

"You should be more serious about autism!"

Honey, you are following a blog called "Autism with a side of fries". Not a scientific journal. Did you think you were signing up the "Doom and Gloom Daily". That's not how I roll. So I'll keep cracking wise and posting pics of the thoughts in my head that I turn into memes. Cause clearly some other folks need a laugh or two themselves.

This idea of meltdowns being "acceptable" or not is a dangerous one. It's like asking someone with epilepsy "Try not to fall down and have a seizure here.". We do our best to keep them from happening in the first place. We also try our best to manage them if they do. Do me a solid though and understand that they happen. Judgment doesn't help here.

Fries do. Want some? (You won't be offered fries by serious medical journals. That's the perk of following this one.)