Sunday, May 31, 2015

Meeting the Milestones that you don't want to meet.

Congratulations to me!  I officially cannot physically manage my child out of an area if he's having a meltdown!  He's gotten too big and much too strong! Yay!! Let me go put that down in his baby book that I stopped filling out when it became way to painful for me to face that page off all the stuff he should have been doing at two that he wasn't.  Wait a second, there's not a space for that.  Marketing opportunity!

Maybe it ought to be some "life event" you could tag your friends who helped you carry your kid out of the dirt and to your car.  Folks could give it a "like".  Wouldn't that be awesome?!  Mark Zuckerberg, get on that already.

Yesterday's outing was a shit show.  I have never been more scared, frightened and mortified at once. I wasn't even sure those feelings could combine like they did but here's my Kiddo proving me wrong again at the EPIC meltdown he had at a birthday party.

I have never experienced anything like it.  It went from "Yay party!" to "Oh my god I'm going to have to call 911 because what the fuck else do I do?" in about two minutes.  I still have no idea what triggered it.  It was the exact same party he had a fantastic time at last year.  Same place.  Same people.  Same everything and it still wasn't enough. I'm sure some person right now is judging me thinking THEY know what I did to screw it up.  To them I say, "FUCK OFF and you're free to come get him."

Because the worst feeling I have right now is shame.  I am so ashamed at his behavior, my behavior because I was in tears and just shamed at being ashamed.  I'm shamed inception.  I'm meta shamed.

This party was for a friend's four year old daughter.  We were surrounded by toddlers.  He couldn't stay.  We're now hitting the milestone of his meltdowns being a danger to others.  Add that moment to my memory book.  Fun!

Driving him home was no walk in the park either.  He was still raging for hours.  He lashed out at my husband and at myself multiple times.  I just don't know what to do at the moment.  It's the next day and he's all "La Di Da!" now but I'm not. I feel like I'm walking around gripping tightly to a hand grenade that I lost the pin too.

He's only getting older and bigger.  I'm only getting older.

These are the milestones no one talks about.  When our autistic kids stop being cute and little, then what?  It's not so cute anymore.  It's not just a nod and a hug and thinking "Oh he's just having a hard time."

If my two girlfriends weren't with me, I don't know what I would have done.  This is the future for us? Really?

My choices are to just shake this off and try again.  Or live like a hermit and never leave the house.  Right now, moving to a convent by myself to be a nun is looking like a appealing option at the moment.

I can accept my son's autism but no, I can't accept that this is our life from now on.  I won't.  I refuse.  I have to figure this out.  We can't live like this.  He deserves more than that. I'm not sure what I am going to do and I don't expect to figure it out all at once.  I just don't want to meet anymore of these milestones anymore.

Tuesday, May 26, 2015

Jack in the Box

It's two days before The Kiddo's birthday.  His eleventh birthday to be exact and would you like to know what toy I am about to search for once he goes to school?

A freaking Jack in the Box.

Because my husband finally figured it out last night what The Kiddo has meant all this time when he keeps asking "Jack Toy? I want play Jack Toy?"  He googled a YouTube clip and showed it to him.  "Do you mean this?"

And my son lost his ever loving mind with laughter.  If the person that posted 20 second clip of a person winding up a Jack in the box suddenly wonders where those two hundred thousand new "views" came from, that would be from my son.  In a single evening.

The Husband looked over at me in triumph. I can't blame him. Anytime one of us figures out before the other what the Hell our Kiddo is scripting about it's like hitting the jackpot.  I allowed my husband to bask in the glory of his victory and I got online trying to figure out where I could find one of these things locally in the next two days.

If you are NOT an autism parent you might be thinking, "What? She's going to go run out and get that thing? He's too old.  That's ridiculous."

If you are an autism parent you might be thinking, "I bet Target has one. Let me google and check and leave her the link." cause that's how we roll!

I gave myself ten seconds of "Son of a bitch.  We couldn't figure this out a few weeks ago.  I could have ordered it online. I'm not paying extra for overnight shipping. I will find that god damn thing today!"

I also gave myself ten seconds of "Oh my god!  He likes something!  Let me run out and buy a dozen of them!!!!"  because I know GO BIG OR GO HOME is how we roll with interests around here.

If you are the type of person with a stick up your butt about "age appropriate" and yadda, yadda, yadda, I'll have you know I'm also ordering a Blue's Clues theme birthday cake for him because he asked yesterday for one.  He's never cared before.  I almost wept that he did. Strike that. I lied.  I totally teared up that he did cause I didn't think we would ever get that.  So,if you have a problem with what's age appropriate, NO CAKE FOR YOU!

We have worked so hard for every word that has ever past his lips.  All three of us.  If my Kiddo wants a Jack in the box, he will get a muthatrucking Jack in the Box.  There is so much he still has not been able to say or communicate to us.  I will jump through hoops to help him when we all do figure out what he is trying to say.

Maybe it was easier when we knew it was always Fries that he wanted but I enjoy the challenge.  Watch out local stores, Mama Fry is on a mission!

Friday, May 22, 2015

A different kind of tired

I get a little tired of always explaining my son's behaviors.  It's not that it's annoying and it's not that it takes a lot of time.  Sometimes, I just don't feel like doing it.  I just want to do what we need to do and go on with our day. I want folks to just see him and think "Oh, autistic.  That's why." and then just go about their day.

I get a little tired of myself resenting other kids and other families.  My kiddo is almost eleven.  Autism has been here roughly since he was two.  I'd like to think this grants me some sort of autistic tenure and I should know better than to compare him to any other typical kid his age.  Yet here I am, still doing it. Plus, I am not just tired but disgusted with myself when I see a kid having a hard time out in public and I still have to remind myself that maybe that kid is autistic. That they are probably having a meltdown.  Yep, that's right.  Mama Fry ain't perfect. I still need prompting not to jump to "Listen to that brat over there."  thinking. I know, I'm a real ass like that.

 I am getting a little tired of the same scripted conversations that we have day in and day out.  I mean, I love hearing him speak. God knows we worked so damned hard to get some of those words out of him.  I also know these scripts make him feel good.  They are the key to what's going on in that brain of his, I get it.   Still, I would like to not wax nostalgic of the greatest hits of his meltdowns. Yeah, that's his new focused interest at the moment.  Rattling off the dates he had these epic meltdowns on because they were so much fun the FIRST time he had them.  I'm just waiting for the walk down memory lane to trigger the upset again.

I am so tired of the planning.  Even the most basic of events require way too much thinking.  Is he due for his medications? Will we get back in time from out outing for the important nighttime routine?  I'm tired of prepping for every possible trigger.  I know all kids are unpredictable but it just seems my autistic kiddo is ten times more so.  Ironic, given the nature of his preferred structured way of life.

I'm tired of being told "I don't know how you do it." because really, what choice do I have?  Good thing I do know how to do it!  I'll let you in on a little secret. We are all making it up as we go! I haven't a clue anymore than you.

I'm tired of constantly calling doctors, emailing teachers, stopping by the pharmacy, trying to decipher the insurance paperwork and trying to do so in a cheerful and pleasant manner.  Extra fun to do after he's been up since 3 am or screaming for an hour over something that made him sad but he can't tell me what it was.

I'm not tired of my Kiddo though.  So, I guess I'll keep doing all this.  ;-)

Friday, May 15, 2015

3:56 AM

"Good Morning" said The Kiddo ever so sweetly.

"Wha?????" said me not so sweetly.

I fumble for my phone and peek at it in disbelief.  3:56 AM.  Kill me. Shoot me.  Put me out of my misery.  This can't be right.  I couldn't even lift my head from my pillow.  He had woken me up during a dream or maybe I was dreaming this. I'm not even sure.

We haven't had this early a wake up in a while.  The husband first clocked hearing him at 3:40.  When you are an autism parent, that sixteen minute difference of extra sleep matters.  The lights went off.  I think my husband ushered him back to bed.  At that moment I was so deliriously confused it could have been the killer clown from Stephen King's "It" that walked him back to his room.  I really didn't care.  I was all "Night Night angel." and Zzzzzzzzzzzz.

But I was not fully back asleep.  My body so desperately wanted to be but my brain was having a fight with it.  I heard it yell "Don't fall back to sleep. He'll be up again."  A bit later he was and so starts the madness of the day.

After he went to school I had to make a quick errand out to the local pharmacy because I'm an autism mom.  If the staff there doesn't see me once a week, they get worried.  It was a quick ride but it really took whatever little energy I had left completely out of me.  I found myself pep talking to get through this one dopey errand.  So I could safely drive there and make sure I got what I needed.

I still felt like I was walking through a mind fog in the aisles.  I either ran my debit card or my haircut appointment reminder card through the register. I proceeded to putter out and then almost go to the wrong car.  Maybe that woman in the minivan would give me a ride home.  She seems nice.

I literally sat in the parking lot of the store for five minutes to wake up enough to drive home.  I kept thinking to myself, "This is effing crazy.  This is not safe for me to be driving."  Again, I'm rolling down the windows, blasting the radio and psyching myself up just to concentrate on driving.

By now you might be thinking, "What could she have possibly needed? She could have stayed home."

That answer would be MELATONIN.

Because God dammit, we would not be doing this TWICE.  We have too many times of that.  We have had weeks of that.  I thought some of that was actually getting better or we had come to some sort of middle ground where I accepted 5:45 as a wake up time and he thought that was his gift to us.

But I was not going back to 3:40 AM wake ups.  I can only speak for myself but at least I have home court advantage today.  My husband and my son are out in the world. I can at least vegetate on the couch and be a little spacey.  Husband has money to make and Kiddo has learning to do.

I've accepted I will never be fully and completely rested but you and I both know there are different levels of tired.  A two hour difference of sleep is huge.  We all can't function on that little sleep.  Physically or emotionally.  The ripple effect that deprivation has is just awful.

Here's hoping this sleep blip was just that or my future posts are going to get a Hell of a lot more punchy.

Wednesday, May 13, 2015

Click BAIT!

Autistic girl and her family are kicked off an United Airlines Flight...

It's been three days and all I keep seeing in my social media news feed is this story. (And if you are following this blog, you probably know about it.  If not, Google. You're on the Internet anyway.)

I've read the story on a few different sites.  Even some of the comments because I frequently make very poor choices with my sanity.  Scan a few blogs written up over.  Tried to figure out the whole story.  We all know there are three sides to it.  The moms, the airlines, and what really happened.  Here are my thoughts on it in no particular order.

1) To those screaming for this Mom to have planned better, SHUT UP.  You can plan an event (One they have done many times before too.) ten ways to Sunday and it can all still go to Hell.  You can have every effing thing your kid usually wants with you and it still won't be what they want or more importantly need at that moment.  You have no idea what you would have done because it was not you in that moment.

2) To the airline, I get it. It's a post 9/11, Malaysian airplane disappearance, German airplane crash into the mountains world we are in.  We have to take our shoes off to be screen before even boarding a plane.  High alert doesn't even begin to describe it.  An employee was told a passenger had the potential to lash out and possibly harm themselves or those around them.  She felt she was doing her job by following her training.

3) To the mom, Girl, I feel you but airplanes don't have kitchens and rarely "extras" on anything.  They charge you extra if your bag weighs too much. (Which you gladly pay because you are an autism mom and you know all the stuff your kid needs on a trip.)  Every freaking thing on that plane is calculated down to the very last ounce of rubber chicken Marsala.

4) To the flight attendant doing her job, I know you saw not a little kid but a fifteen year old young woman and yes a scratch from her WOULD hurt.  You had no extras to give but would have killed you to ask what else could be done?  Maybe offer to microwave the meal she did have? Even if it was just a sandwich.  I have been known to make shit up as I go all the time with my kid when he's on the verge of a meltdown.  I would of opened that sandwich up, poured on some ketchup packets and called it a hot opened face sammi.  Did you offer fries?  That's my usual go to.

5) To the Mom again, you got "real" with them.  I get it.  I don't daisy step around the words meltdown either when I see one coming.  You flat out told them what was going to go down.  Would I have opened with that?  I don't know.  Not my kid. You only know yours. I only know mine.  If there were no extras to give, what else could that employee done? Did you ask?  Did you tell her?

6) To that flight attendant again.  Did you try and talk to mom about solutions?  Did you ask your co workers for help?  Ideas?  Did it ever occur to you that when you saw the young with autism a bit later quietly sitting there that maybe things were okay and you should just check in with the mom?  How are things? Good?  Okay. There's a call button.  Let me know.  I'll be back later. Then you update the pilot that everything is calm.

7) To the pilot, I don't really blame you at all in this because you were flying the damn freaking plane.  You weren't back there.  You didn't see what was going on. You were busy flying the plane.  I know for myself, I want your attention on that.  I have no idea what was told to you either.  You followed your training.  You made the call based on what you knew.

8) To the media, STOP USING AUTISM AS YOUR CLICK BAIT! I see thousands of stories that are just fuel to the fire.  You just light a match and let that righteous indignation burn. What does that do?  Don't tell me it's raising awareness.  All I see is it's raising blood pressures and rage. More stories about change and doing as opposed to just this.  Will you follow this up?  Will you report on what's being done to prevent this in the future?  Don't just make this a single shot to spike up your online site traffic.  Great, you got every one's attention but now what are you going to do with it???

9) To the entire INTERNET, you know, sometimes you are the reason we can't have nice things.   Like the Internet.  I have made fantastic online friends.  Gotten gobs of support in the dire times I have need it online.  I have learned more information on a variety of subjects that I never would have had the opportunity otherwise.  I just can't quit you but dammit there are days I don't like you very much.  "Scroll on" is my mantra when I see stuff like this.  I don't have to comment on every article or make a statement.  I can just move on.  If you must though, READ THE ARTICLE!!! Writers are so very happy when their work is seen past a headline.

10) I don't really have a tenth thought on this but I hated leaving it off at nine.  Feel free to leave comments why that is wrong, probably Obama's fault and that I am going to Hell if I do not accept the Deity of your choice as my personal savior.

Saturday, May 9, 2015

Happy Mother's Day. Autism Style.

Happy Mother's Day Fries! It's your day to relax and unwind!

Just kidding!  You're an autism mom.  You're still doing the same damn stuff you do all the other 364 days a year!  Schedule to keep Moms!! Chop! Chop!

And because you're an autism mom, you know that it will be a better day with the schedule even if it means doing the stuff you don't really want to do for the hundredth time.  (Oh, we're going on a train ride? Fantastic!)

And because you are an autism mom, you will still find yourself awake at 3AM.  Might be because your kid is DONE sleeping for the night or the one night they do sleep, your body clock will wake you up because that kid of yours trained you down to your very DNA.  This is a GREAT time to lie in bed and stare at your ceiling. Crank that panic attack to eleven and really get your worry on.

And because you're an autism mom, maybe someone in your family might make you a special meal.  Which will be nice to have company in the kitchen while your cooking french fries and hot dogs again for your kiddo because you need them to eat.  Where's the vegetables? You mean that 1/16 of a serving they get from Trader Joe's Veggie chips doesn't count?  Imagine that! The next thing you'll tell me is that "Fruit Snacks" contain no actual fruit! Madness!

Or maybe you will all go out to eat but you'll still find yourself cooking before you go because you're an autism mom.  You know it's better to have them fed and waiting than hungry and waiting.  You'll channel your inner mountain Sherpa and pack that mighty Mom purse with all the creations that Apple technology ever invented to keep them entertained.  You probably won't even get to pick a place you want to eat at because you're an autism mom.  You'll know to go where there's a slight chance they might eat.  If it has a liquor licence and doesn't have a drive thru window, that'll be fancy.  Put on your "good" yoga pants!

And because you're an autism mom, you'll get an art project present that they "made" in school.  By made I mean you'll know 80% of it was made by the teacher's aide. You might find yourself thinking "Maybe I'll drop this off at the aide's mother's house so they can get a project from their kid." but you will smile and make a huge fuss anyway about it.  At least someone thought of you even if you are not sure if your kid did.

And because you're an autism mom, someone will make a point of tell you how you are so extra special but you won't feel it.  They'll remark that they simply "don't know how you do it" and that "God only gives special kids to special people".  You might think "Bullshit! I'm just this kid's mom.  I'm just being a mom.  Who else is going to do it? Are non autistic kids NOT special?  They are to their moms." But you'll smile and nod because hey, someone is just being nice to you.

And because you're an autism mom you will love your child with a passion that borders on fierce.  You know no one will be safe if they so much as disturb a hair on your kid's head.

And because you're an autism mom, you will totally understand if a fellow autism mom calls you up in a rage over a wrong towards their own child.  You'll offer to post bail or help hide the body.

And because you're an autism mom, you will second, third and fourth guess yourself a lot.  Some stuff will work.  Others? Pfffffffft!

But because you are an autism mom, you will take a deep breath and try again.

Oh and order another side of fries.  (At least that's what this autism mom does.)

Sunday, May 3, 2015

Museum Meltdown Madness

Autism Awareness Month might be over but here at French Fry Inc, we like to keep that party going 365!  Damn, did we ever at the American Museum of Natural History in New York City this morning.  Yep, we brought The Kiddo that never sleeps to the city that never does either.  It seemed like the ideal pairing!

A few months ago, a blog follower tipped me off that the History Museum does a "autism friendly" event one Saturday morning every month.  If you are in the NYC area and want to know more, check out this link for details. (Nope. They didn't let me in for free.  They didn't even know I was coming.  It was an undercover mission.) 

The museum opens one hour early JUST for Team Quirky.  You are given a tour and then free to stay after when they open the doors for the masses.  If you have ever been to any attraction in Manhattan, I think you can imagine how unique this opportunity can be.  Let's put it in perspective here.  This is the museum Ben Stiller runs all around in that "Night At the Museum". So we get to walk around with NO CROWDS!  No one judging.  All with the tribe.  Your kid is flapping?  Cool!  Mine is too! 

I know what you are thinking.  "Oh my kid could never do that though.  He would have a huge meltdown and Oh my god! What would we do?"  Guess what? My kiddo HAD a huge ass meltdown at it AND we made it out alive.  This tour is Kiddo tested, Mama Fry approved! 

My husband is quite the history buff.  We're talking about a man that took me to see Martin Van Buren's home on our first vacation together as a couple. I knew he would be down for checking this out. Honestly, this is one of those things as parent to a child with autism that you pretty much think you're not going to be able to do.  Like ever.  Now we had a chance.  So, we signed up. (If you are thinking about this, you MUST register to do it.  No walk ins.)  He called up and booked it.  

Now being where we live in New Jersey, city day trips aren't impossible.  However, the Kiddo is involved. While taking a train in could have been fun for him, it wouldn't allow us much control over getting in and out when we needed.  Since the tour itself started at 9AM, we decided to stay over the night before in the city.  Make it a little getaway.  Again, I must have forgotten I was bringing the Kiddo with us.  The Kiddo and his very intense obsession with hotels.  All the rooms are assigned a number and we all sleep together in a bed like a pack of dogs?  YES PLEASE!  Sign him up! 

In previous trips, getting The Kiddo to leave the hotel has been challenging.  He's usually game to go to the hotel pool and that's about it.  We've even had a hard time getting him to leave to go get something to eat.  He's obsessed with staying in the room.  Mainly because he doesn't want the vacation to end.  Can you blame him?  Vacations are pretty awesome.  It usually takes some tough negotiations on our end to get him actually leave the hotel room and do things.  It helps that Daddy Fry is an attorney.  He meets The Kiddo head on like a union boss.  

I wrote a social story. We talked about what we would see constantly.  We showed him the web site to look at the exhibits.  We got to the hotel and checked in.  He very willingly went out to dinner with us.  Like actually left the hotel to go get something to eat.  (We had no choice. Our hotel had no restaurant.) We got him his first New York City slice of pizza.  He loved watching taxis buzz by and I saw him checking out some of the bigger buildings.  He gladly again left in the morning with us to go get some breakfast.  Happy as a clam.  I kept thinking "Hey, he's really doing well." ROOKIE MISTAKE!!

We check out.  He's cool.  My husband remarks to me "Hey do you have two "fives"?" as he wants to pay the parking garage guy in cash and with that, it all starts to fall apart.  

The Kiddo starts scripting "Two FIVE!" randomly as we are driving over to the museum.  We just kind of acknowledge what he said but at the same time, not make a deal out of it.  We arrive incredibly early but we find fantastic parking.  I say "Let's just situate ourselves in here" to kill some time.  Mainly because I don't want to be just standing outside a locked door with a Kiddo who's just randomly scripting "Two FIVE" to passersby. (Of course, this is New York City we are talking about.  Thinking about it now, I bet no one would have even batted an eye at it.)   He's contained in the car but Daddy Fry is like "Let's roll." Bam! Out the car he goes and we're off and I'm getting a bad feeling about this.  

Daddy Fry and I locate the security/staff entrance and we still have like a half hour to kill.  So he takes him for a walk around the block and I sit myself on the steps.  I just knew it was better this way because in my gut I was thinking it was about to go south. 

Time passes and I see another family approaching.  I can tell they are one of us and the Mom and I lock eyes.  She tentatively asks "Are you here for the special tour?" and I smile and say "YES!" By then, Kiddo and Daddy Fry have returned and seem to be in okay spirits.  So we all walk in with this family.  I see others approaching and I'm like "OK so maybe this will be good." 

We meet our tour guide.  He was so nice!  Everyone there was.  He had a bag a dinosaur toys he was handing out so the kids could fidget and play with them.  He heard Kiddo scripting numbers and asked "What's your favorite number?" and again I was impressed. You want to engage my Kiddo?  I know you're good people. Talking about numbers though I think led to the beginning of the end.  Suddenly The Kiddo starting rattling off "613", which was the room number of the hotel we just left.  Daddy Fry and I looked at each other in fear.  We knew what this meant.  He wanted to go back to the room and that was not even an option.  After this tour, we were out of here.  We had talked about other things to do in passing during the week but I think we both knew it probably would not happen.  Best not to press your luck.  I'm a "Leave them wanting more.  Go out on top" kind of gal.  

We start the tour.  The Kiddo looks pissed.  It's clear he knows he's not going back to the hotel room and he was going to make sure everyone in that museum knew it too.  Cue the water works.  Lots of loud crying and whining.  After a while, I take him out of a room to the hallway.  We find a nice bench. I give him my phone and say "Let's just let Daddy go look around.  Let's watch Blue's Clues." He starts on YouTube.  I just want my husband to have this.  I just want him to look around and enjoy himself.  I know how much he loves this place.  

I think I got about two minutes of calm and then The Kiddo decided he no longer shared this feeling.  That's when the yelling started, which I know will then lead to screaming (It did!) and then flopping dead weight onto the floor. (Did that too!) We have hit the point of no return.  We needed to get the Hell out of there.   

We get a moment of calm in the car.  I know it's because the Kiddo thinks we are driving back to the hotel.  (We're not and we didn't.) Cue the epic meltdown take two.  The whole ride out of the city and all the way back to New Jersey.  I got the brunt of it.  He pulled my hair and my clothes and screamed in my ear the whole drive.  I think we were about a minute away from our actual house when he finally accepted we were not going back to New York.  

Then he turned off the screaming and asked to go out to lunch.  

Are. You. Fucking. Kidding. Me?

This is where I am so confused.  How much of this was meltdown versus tantrum that he didn't get his own way?  I really think for him, they sometimes overlap.  The majority of all of this was fixated on getting what he wanted and his reaction to not getting it.  

No Kiddo. No lunch.  Right now, I'm not even sure if I will ever leave the house with him again and he knows it too.  Cue the big time sucking up on his part at the moment.   We have a trip planned in June.  I think my husband might have to slip me a mickey and tie me to the roof rack in order to get me to go. 

So, was it worth it?  Yeah, cause even with the meltdown, I did see some progress on this trip.  Frankly, I live in fear that if we as autism families don't take advantage of these programs, people will stop offering them.  That's why I am telling you.  Even if this is no where near you, call around where you are.  You might be surprised and find a similar one. 

We're living proof you can do it.  Even with the meltdown, nobody cared.  They've all been there.  They know and they were probably thanking the deity of their choice that it wasn't their kid for a change.

  Yep, French Fry Inc took one for Team Quirky today. You're welcome!