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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.)








Monday, April 18, 2016

Past Me meet Now Me.

"At what age did your son start to talk?" 

"When did your son toilet train?" 

"How old was your son when he first slept through the night?" 

If I didn't know any better, I would think those emails were from me. Well, Past Me. Which would be kind of Sci Fi movie like that Past Me was writing to Now Me. It would be handy if Now Me could write back to Past Me something really useful like "Don't forget to take the chicken out to defrost for dinner." But I digress...

To answer these top three questions:

1) At five with repeating "Hey, hey, hey!" like Dwayne from "What's Happening?"

2) At seven, eight, nine, and still at eleven on the odd night or morning after now and then. Dry sheets this week, so YAY!  My washer and dryer sure appreciate a little less work.

3) The other night around 1:30AM the Kiddo decided it was a great time to discuss his desire to go to the local diner for french fries. In his defense, they do make really good fries. It was pretty cool that he called out for his Dad, not me, to discuss this plan. Well, I'm not sure my husband would share that opinion but Hey, he called for you dude! So that whole "Sleeping through the night thing.". We don't have that perfected yet. Let's call that a work in progress.


 "I just need something to hold onto for hope."


Now this I get. Girl, you are preaching to the choir here. I am holding onto hope and my sanity with a white knuckled grip. The Kiddo is only growing older and it seems to be at a faster rate than I ever knew that time could go.  Now Me really wishes she could sit down Past Me and tell her to Buckle Up. I'm not sure Past Me would have fully understood what that meant though. Past Me was too busy in "Fix It Jesus!" mode.

So, I don't know how much I'm about to say will make sense to those who are really intent on finding out the magical age as to when things will happen. I've said it time and again. These kids create their own milestones.  They just do. There is no set timeline as to when anything will happen or won't. I know you feel like you are racing against the clock here, but there really is no end to all of this. Autism is along for the ride.

Know it. Live it. Embrace it.


Some things will happen and some things might never happen. That can be good and bad depending on what you are talking about. Now Me really wants you to know that. I know that's a pretty abstract concept. Past Me would hate Now Me for saying that.  "Like stop trying to be deep about this." but I have no other way to explain it.

Now Me wants you to think of it this way.  You now know the ages my Kiddo did something you were asking about. What if that age comes and goes and your child still can't do something?  Can you see how holding on to that number is like setting yourself up to be sad if it doesn't happen by that point?

Now You is coming. I swear this much is true. Now You will be ever changing and looking at Past You with some serious side eye and a knowing sympathetic head nod. Now You will want to take Past You into their arms to both hug them and shake them by the shoulders.  I know this because I'm pretty sure Now Me would probably slap Past Me and tell her to calm the eff down.

Now Me or Now You. Not perfect. Not by a mile. But they are also a tiny bit happier living in the Now.

Future Me however, Man, that chick is a worrier.  Somebody order than gal another side of fries.





Tuesday, April 5, 2016

Running away from home.

Daddy Fry does not like to shop. We quickly became the couple where when a holiday or birthday happened, gifts were often something for the house. (We sealed our union a month before our marriage with a new hot water heater.) Or we did the "Hey, I'm going to get this thing that I want. (Book, purse, power tool etc...) Let's just call that my gift."

But we still go through the "What would you like for...?" motions. I'm not sure why. We've been together for fifteen years now. What can I say? The Kiddo isn't the only one around here who likes his routines. On the night of the fourth sick day in a row with the Kiddo and looking ahead to another week off for Spring Break on top of that, Daddy Fry made the mistake of noting it would be my birthday soon and what would I like for it.

All I could think of in that moment was SILENCE. I wanted gobs and gobs of silence. I wanted no responsibilities. No one asking me for a thing. No one touching me. I wanted 24 hours to myself. I wanted to run away from home. However, I didn't want to say it.

Correction, I didn't want to admit it. I wanted to be a pillar of strength because I'm Eileen "Mama Fry" Shaklee and I'm supper autism mama and Aw feck it, I'm so freaking tired. I need a break. Mama Fry would be calling out another mom for pulling this medaling for martyrdom crap.  I needed to advocate for myself.  SO I DID!

I asked for a night alone in a hotel BY MYSELF!  (You hear that?  That's the sound of multiple moms saying "OH HELLS YEAH!")

And seeing as I was smart enough to marry a guy like Daddy Fry, that's exactly what happened.  He replied "Well Hell, I've been wanting to do that myself."  So we quickly agreed he would do the same next. Autism dads need breaks too. I whipped out my laptop and started searching for deals.  Found one pretty cheap and booked it before Daddy Fry could change his mind. :-)

And it was everything I needed it to be.

A week later I found myself checking in BY MYSELF without an autism mom bag in tow.  I packed just for me!  I KNOW!

Front desk staff:"What brings you here today?"

Me:"I'm an exhausted autism mom and I'm running away from home."

Front desk staff:"Guuuurl, I hide from my kid in the bathroom all the time. I got you!" and she upgraded my room.  It's safe to say that woman became my new BFF as she performed her own personal brand of giving to the autism community.

You see that king size bed?  I slept in the middle of it. Splayed out like a starfish.  


Look at the nice children playing. Get the sand all over kids. I don't have to clean any of you up!



I took myself to dinner to a place that I didn't have to consult prior to make sure there was acceptable sensory friendly food.  I took my time eating. I didn't have to play court jester to keep a Kiddo entertained.



This was immediately hung on my door by 7PM. I was tempted to take it home with me. 


Pajamas, ridiculous facial mask, and magazines. Once, twice, three times a happy lady. 

Did I forget about all things autism and my family? No, but it's amazing what some time to yourself can do for your mental well being. I actually thought about my son a lot while I was on my little getaway but not in the obsessing over stupid little dopey shit way. I found myself thinking of the things I was grateful about.  I even thought about the not so good stuff but instead of dwelling on the "It all sucks!" vibe, I tried to think of some new ways to approach things.  

I know this is not a thing that every mother can do for herself. Maybe running away from home can only be just running away for a cup of coffee by yourself.  Fries, if we crack the whole foundation goes down with it. We MUST take care of ourselves. No one wins an award for most stoic. 

I had grand plans for sleeping in but course, my Kiddo trained body clock had me up at 6:30AM. I found myself kind of eager to get on the road and go home anyway. I was missing my guys. I had gotten what I so desperately wanted but what I needed more was my family.  So I packed up and headed back. After a ridiculously long hot shower and two cups of coffee from the in room coffee machine of course. (I mean, I missed them but they weren't going anywhere.) 


Silence and sleep.  Best beauty/mental health treatment around!  

I know this won't be a thing I can do all the time but at least now it's something in my memory bank. So when it's a craptastic day I can close my eyes and remember it. A mental vacation I can pull out as needed when I'm ready to pull the hair out of my head. 

Daddy Fry, it's your turn. Go book it.  :-) 







Monday, March 28, 2016

The Good, the bad, and the surprising parts of Autism.

My husband finished dinner last night and the Kiddo took it upon himself to clean up after him. He took his plate and fork and placed it in the dishwasher. By "placed" I mean "threw in there." but dammit, "A+" for effort! I had already left the room, so Daddy Fry went to find me to share this.

As we both stood there marveling in how utterly awesome/sweet that was, the Kiddo came up behind my husband carrying the half finished wine glass the Daddy Fry had left on the table and handed it to him. Then he went back to his iPad.

Daddy Fry said "Well that's going in the blog, isn't it?"

Well duh! That story wrote itself.

It's an example of how freaking thoughtful the Kiddo can be and a reminder to us that he's often more capable of things. Only child with a side of autism often lends itself to me overdoing things for him.  Which if the pre Kiddo Job Coach to autistic teens saw, oh she would give me an earful. I catch myself doing it all the time.

And yet when we went out to eat with family recently, I found myself barely eating because I was on non stop Kiddo cleaning up duty. It seems that despite being very interested in consuming a bowl of rice at the Chinese restaurant, it was a "utensils optional" day according to the Kiddo. Sticky white rice and grubby eleven year old fingers, not cute. This coupled with him having one of those "Let's raise awareness about my autism LOUDLY!" day with tons of stim noises and scripting. I knew why he was doing it. The place we went to was new, different people joined us that we don't see often, and the food wasn't like how we get it at the place by us. It was a trifecta of suck. Even though I knew that it could go badly going into it, I still had to try because like I mentioned above, he can really surprise us at what he can do. If we don't give him a chance, how will we ever know?

Still, I won't lie. I was tad annoyed/frustrated/ticked that we were having a less than stellar moment out. (Hey, before you rant on me for it remember two things. 1) I'm human. 2) My mom reads this.) I'm allowed to get annoyed just like he's allowed to stim. It's what we do. I have to try and remember as frustrated as I felt, his anxiety was through the flipping roof. That most days it's the anxiety, not the autism that is the bigger pain in the ass in this house. We're talking about a Kiddo who could medal in worrying.

Here I was thinking "Meet ya out to eat? Sure! We can do that." and SURPRISE! Not today, Satan. Not today. Did you enjoy that one shrimp dumpling you got? Good, cause that's all you're getting to eat at this meal.

That's just life with the Kiddo.

His surprises can be awesome and amazing but they can also be awful and sometimes downright terrifying. Even though the bad ones can really grind my gears, I still like holding out for a good one. They do pop up now and then.

I'm not sure what to call this one. Certainly surprising though.

Kiddo is either doing Yoga or surfing YouTube. I'm not sure.