Tuesday, December 16, 2014

Have you tried...

The Kiddo is now ten. Trust me Honey, I have tried.  Whatever you are suggesting, we have done and then some.

I know this is being said to me because you want to help. You see us struggling. You want to see him succeed.  You love him.  You love us.  Or you think we are clueless and need direction.  You're providing a public service.  Aren't you a sweetheart?

Please realize though, there comes a point where as a family you have been there, done that and sent the postcard.

You see, sometimes despite doing all these things, it's not enough.  You may have the mind set that doing these things will fix a problem and make the thing go away.  It doesn't work like that though.  Trust me.  I've learned that by experience.  When you try your umpteenth wonder fix and it doesn't work out the way you think it will, you just start realizing you have to pick your pony for each race.  Sometimes you don't even want to race.  Sometimes you just want to sit on the couch and watch a Netflix.

I know for myself it went from trying things to help make things go away to trying things to nip things in the bud to finally just trying things that just help him cope.

I also learned that he wasn't always the one that needed to be subject to the "Have you tried...".  It's about me too.

Oh you're an autism parent too so you know?  Nope, you don't.  You know the autism you live with not the one residing at this house, thank you very much.  I've been guilty of doing this too.  I have to remind myself the same thing.  The autism you live with tends to give you the worse view of tunnel vision on the topic.  Honestly it took starting this blog for me to start realizing I needed open my mind a bit more.  It's amazing what a few emails or blog comments that say "Nope!" can do to your outlook and your ego.  Both good and bad.

The only trying I'm interested in trying right now is just getting through another day.  I am going to try and get a few loads of laundry done.  I'm going to try and figure out what to do with that pound of chopped beef I have defrosting in the fridge for dinner. I'm going to try to remember the new recycling pick up schedule for my town.  I'm going to try to get the kiddo to practice his piano when he gets home from school.  Mostly, I'm going to try to let autism not completely try my patience.  (Although it often does.)

So if you wouldn't mind, hold back on the "Have you tried...".  Unless it's something like "Have you tried this new restaurant?  I insist you do.  Here's a gift card to it and I will babysit your kid while you go."  I'm never going to say no to that.

Wait a minute. Someone out there is taking offence to this post.  They are really pissed.  They are about to rattle off some story of a terrible parent they know and how ungrateful I must be.  That's cool by me because yeah, we may be special needs parents but we're not freaking saints here.  We can suck just as much as the next guy.  Trust me, I am very well aware of my flaws.  The nice part about being a blogger is that there is someone nearly every day online writing to point them out to me.  How handy of them to provide a list!  I bet someone is pressing "send" just now on an email they crafted about how worried they are about my kiddo's eating habits.  "Have you tried..." and yadda,yadda, yadda.  Nope, I didn't.  Never heard of it.  Why don't you come pick up my kiddo and show me how? Don't worry.  I'm laughing with you, not at you.  Promise.  ;-)

Monday, December 8, 2014

Running the Meltdown Marathon

A birthday party for a classmate at an indoor trampoline joint today. Well that's going to be an awesome way to spend an afternoon!

Until it's not. 

I made the rookie mistake of not casing this joint before hand.  Yeah the invitation said 2:30 but I should know by now that's not the real time these things get started.  There will be paperwork where I waive my right to sue and possibly sell them my right kidney.  I don't know.  I don't read them.  (A lawyer's wife. I should know better.)  I should have called and found out the real start time.  So I walked in with the kiddo at 2:20 and then I had FORTY minutes to kill with a child who was ready to start jumping RIGHT NOW

And this place was in one of those huge warehouses.  Hundreds of kids and music pumping through a sounds system.  If they dimmed the lights and gave out glow sticks it would of been a rave.

It was chaos.

It was a sensory overload.

It was a cluster fuck.

I had one eye on the clock and one on the kiddo.  I had a meltdown brewing before me.  I pulled out my phone to try and distract him with games. I talked about the rules of jumping safety which I suspect I just sounded like Charlie Brown's teacher at that point.  The kiddo leaned into me and started to fidget with the buttons on my sweater.  The ones right by my chest cause you know, ten year old boy looking like he's coping a feel on his mom's boobs in public, let's really stand out.  And then the noise.

He started to cry. LOUDLY.  I found myself pleading with him to just hang on.  We would get through this.  Other moms and kids we knew were coming us to by then. They were trying to be sweet and tell him it would be soon.  "Disappointing!" he kept crying.  Ugh, right in my heart kid!

But I saw a lot of other people turning to look at him.  I mean, it makes sense.  You hear that kind of loud cry in public, you're gonna look.  Of course, it's when that look that goes from "What's that?" to "Wtf?" is the one I can't stand.  Like stop looking.  Do you think your hard cold stare is going to stop it? Kids actually walked away from him.  I don't blame them.  Why sit next to the kid crying?

All I could think was "Just this once could you not meltdown?  I know this place is the third circle of Hell for you.  I know it's loud and you have to wait and you don't get it.  There's too many people.  It's too big.  You just can't deal but just this once!! Please!!"

At the same time I"m also thinking "God dammit!  Can't this place get their shit together? How the Hell are you going to tell a bunch of kids to sit on a bench for a half hour in front of a wonderland of trampolines?  Autism or not.  That's crazy! Turn down that crappy music while you're at and get off my lawn!!"

Finally we got the "All clear" to jump and like a switch he jumped and it was fine. A few of the moms patted me on the back and said "You made it!"  They got it.  They knew.  I wiped away my own near tears and got myself together.

And I thought we were in the clear but the meltdown was still just lingering there.  This place was just too loud and too crowded.  I could see it on his face and in his eyes after an hour, he was done. So I had the debate in my head of pulling him out of there now or trying to forge ahead for the after party with cake.  Was cake worth it for the possibility of me carrying a ten year old out of there kicking and screaming?  It would have to be the world's best cake served on a silver platter with maybe Benedict Cumberbatch feeding it to me.  Yeah, we're out.  Before I can even say to him that it's time to split, he comes up to me and says "DONE!"

You don't have to say that to me twice Buddy!  I hightailed it out of there so fast I bet left track marks and a trail of smoke.  When autism tells you we're done, you are done!

So he is currently cope pacing his lap around my kitchen and living room that he does while singing along to songs on his iPad and he can do that till the cows come home or Daddy.  Whichever happens first.

I'm still wired from the experience.  Even though it sucked it could of been a lot worse.  Hell, there was time we wouldn't of lasted five minutes in that.  So that's something.  Still, I hate the guilt I have from these feelings I have during these meltdowns.  I feel like a hostage negotiator between him and the rest of the world all the time and it's flipping exhausting.  Just once kiddo, just cut Mama a break.  Let's call this your Christmas gift to me.  You don't even have to wrap it.

And I want this place to work for him because it's got some serious sensory input benefits to it and winter is around the corner.  So I think Mama Fry needs to get on the phone with the manager.  Set up some sort of special needs play hour there.  Or at least suggest better music.  ;-) 

Monday, December 1, 2014

No, it's not okay.

"He's fine Mama.  It's totally okay that he's ripped up all the bedding off my kid's bed and buried himself under the covers." 

No it's not. He just made a huge mess in your kid's room.  Okay, that room was a bit messy to begin with but he did add to the chaos.

"Don't worry about that glass he dropped. It's okay. No big deal."

Yes it is.  He took something of yours and destroyed it.  Doesn't matter if it was high end crystal or one of Wal Mart's finest.  It is no longer.

"Oh don't worry about my kid.  Doesn't matter he ripped the toy out of their hands.  He can have it. It's okay. He's the guest."

No!  This is NOT okay.  Yes, he has autism but dammit to Hell, he does not get a free pass!

"It's okay. He doesn't know any better."

Well how will ever if we don't show him that this behavior is NOT okay.  I will always be scanning the scene for potential triggers.   I will also be the first one to jump on him when one gets past me before I could intercept.

He may have autism but he's also a ten year old boy.  An only child to boot.  You think my kiddo doesn't have the potential to be a bit of a jerk?  Oh let me assure you. He has met that milestone many a time.  

I will make him apologize.  I will make him clean up his mess.  I will make him give back the toy and take turns.  Do me a favor.  Let me.  Don't give him a "Get out of jail free" card.  That's not really going to teach him a thing.

I know you love him.  I'm grateful you do.  I owe you big time that you do put up with some of the accommodations he does need. 

Please, please do not let this kiddo just get away with something you wouldn't let any other kid his age.

Now like any kid who isn't your kid, by all means, look to me if you need some guidance.  I wouldn't know what to do with your kids either.  I do know some basics.  You can say "No" to my kid.  Yes, he does understand it.  Along with, "excuse me", "wait your turn" and "stop it".  Feel free to say any of these as needed.

You may think we live a very structured and scheduled life but for us it's okay.  We're not looking for a free ride.  To us, that's not okay.

You know what's okay?  Fries.  Fries are always okay.  :-)

Tuesday, November 25, 2014

The things I know to be true.

Despite living this autism life long enough now to qualify for tenure, I am forever being reminded that the Kiddo is the boss/teacher.  I am his mere unpaid intern.  I learn on the job.   If being his mom gave college credit, I suspect I would only be halfway towards a degree.  There is still so much to learn.

There are some things though that I know to be true. 

I know now there will be times I cry.  Hard, ugly, snot bubble tears.  Out of frustration. Out of joy.  Out of being completely overwhelmed by even the silliest event.  (My family still doesn't quite understand why me dropping a meatloaf caused me to collapse in a puddle on the floor but that day.  That damn stinking day, it did.) Sometimes all in the same hour.  Autism is action packed like that.  Then he'll go do something awesome like running up and hugging me and then running off again.  That will never not make me teary.

I know that the communication issue isn't just on him.  It's on me too.  This isn't just about him finding a way to explain what he wants and needs.  This is about how I listen and understand his language.  I know there is a difference between McDonald's, different McDonald's and the other McDonald's.  What, you don't?  Location, location, location.  I know that cheese quesadillas are pizza in his world because they are cut into triangles and calculators are phones because they have number buttons on them.  I thought I knew language.  He's showing me a whole new way to understand it.

I know that when a day off of school rolls around that I better have a plan for the day or he will make one for me.  One that might include recreating a previous class trip or outing that took place four years ago.  I get the fun task of not being let in on that fact and having to guess a lot.  He is better at dropping hints though and I've gotten smarter by approaching him with "OK, here's what we're doing today." before I am told we need to eat at the Applebee's in Norfolk, Virginia for lunch today.  Did I mention we live in New Jersey? ;-)

I know to let go of traditional milestones and benchmarks.  He sets his own and they are way better.

I know he can have like ridiculously great eye contact and will look so engaged that for a moment I will forget autism lives here.

I know he'll never be the kid that leads the social interaction.  He's always going to be the follower, not the leader.  That scares me.  A lot.  I also know though that since his attention span is short, he won't follow for long.  So "Yay!" for impulsive behavior. Who knew there would be benefits to it?

I know it will never not hurt to see a typical kid try to interact with him on the playground and eventually get bored and stop.  Or just be confused and run away. 

I know I shake off that above mentioned hurt much faster now.  Doesn't mean I forget about it though.

I know I will be rendered speechless when I do see a typical kid just go out of their way to be nice to him.  It gives me hope even though I wonder will this change once the teen years hit. 

I know that since I started writing about autism and our lives I am now forced to really accept the reality of our situation.  That's been both good and bad. 

I know that kiddo of mine will continue to surprise me. 

I know the joy of meeting other autism families that I have gotten to know online.  I hope to do more of that.  Fry Convention anyone?

I know there will be those who give looks, whisper under the breath and troll online communities while hiding behind their computers.  Screw 'em.  I have better things to do. 

I know that I need to wrap this post up.  I know you're just as tired/busy as I am most days.  ;-)

Thursday, November 20, 2014

Thank you. No really, thank you.

Many times I use this blog as an outlet for my frustration when it comes to all things autism and how we just don't seem to fit in.  That's not the full picture and I want to set things right.  However, being sleep deprived mom who is often chasing after her Kiddo in his path of chaos, I often don't get the chance to say a proper "thank you" to those who deserve it.  I don't want them to think I wasn't grateful or because I barely got the words out before I was off that I just said them without really meaning it.  Trust me, I did.

To Gino and the pizza place.  Our pizza place.  My husband is a smart man and knows every once and a while I am not going to want to cook.  He's going to say the romantic words, "Let's go out to eat." to me and it will cause me to swoon.  My standards have changed vastly.  It won't be fancy.  It will be at a place that sells soda by the can and pizza by the slice on a paper plate.  But if you sit in the back, a very nice waitress will come over with a menu and crayons for your Kiddo.  She will remember his slice and a side of fries order and a chocolate milk.   The owner will greet the Kiddo by name as soon as we walk in.  They won't bat an eyelash when he sings along to the radio or says his verbal stim du jour ten thousand times in a row.  They never sigh upon seeing us. They smile instead.  The waitress will give the Kiddo one of her aprons because she knows he's fixated on it.  They will scold me when I do come in without him to grab take out, "Where's the Kiddo?  You tell him Gino says Hi!"   I wish the world was filled with Gino's and that everywhere anyone went there was a waitress that would patiently listen to the Kiddo as he placed his order.  Acceptance at it's best with a good calzone to boot.

To the teenage girl at the mall that saw me struggling with Kiddo when he was in full on meltdown mode. I was trying to get him to leave.  He was in tears, screaming.  You walked away from the gaggle of girls and over the door.  You held it open wide and didn't say a word.  You just pitched in.  You could of easily stood with your pals with your mouth agape.  You just saw what needed to be done and it was just not much out of your day or out of your life to do it.  You didn't give me a look of pity.  You didn't give me a look of judgement.  You just helped.  Thank you from the bottom of my heart.  I am so glad to know that there are people like you who just see where they can help and do.

To the lady running the bouncy house at the ballpark.  Who knew the that sound system at the place was going to set the kiddo off?  Like most things with autism, we won't know till we try.  We'll try and salvage the outing as best we can.  Bouncy house for kids?  Put him in.  Maybe that can help.  When you turned to me and said "Lady, he's crying." I really was ready to rip your head off. I knew he was. I curtly replied how he had autism and was just trying to cope.  You then said the words that nearly broke my heart and made me hang my head in shame.  "I figured.  My brother has autism.  I just wanted you to know in case you couldn't see him in there."   You weren't judging.  You were helping me and I couldn't even see it.  I'm was an ass.  Forgive me?

To the countless kids at my son's school.  You see him when we are out and about and you make a point of saying "Hi."  I am always so amazed by this.  Usually the kiddo doesn't reply unless I prompt him.  None of that seems to phase you.  You just kind of know, that's his way.  So many of you volunteer to sit with him and his classmates at lunch or to play games.  You just do it.  No questions asked.  I am amazed by it.  It fills my heart.  My only hope is as you both grow older, you'll still show the same amount of acceptance.  It's one thing at ten but please still be kind in your teen years.  I have hope you will though.

And there are so many more and I know I am forgetting them. I'm sorry.  Thank you for being patient with this absent minded Mama with much on her mind.

Saturday, November 15, 2014

Something scarier than autism

You know what's scarier than an autism diagnosis?

Autism and puberty!

Good gravy, this kiddo is gonna kill me. Seriously, go buy stock in the L'oreal hair dye company. Business is going to good for the next ten years or so. No sooner do I cover my gray does he give me a reason to sprout twenty new screaming white hairs.

First, we are dealing with some growth spurts galore. OK, that I expected and it's not like I haven't dealt with them before. He puts on a pair of pants that he wore just the week before and they look like shorts. I can't help but wonder is he actually having growing pains. It wasn't just a cheesy sitcom from the 80s. It's a real thing. However, like all physical things with him, he can't tell me. I just get to guess. Which, can I just tell you how much fun that is? He usually clues us in on things like stomach upset by barfing across a table in a crowded restaurant. (Yeah, that's a place we can't go back to for like a year.).

Then, he's been getting some pimples on his face. Most of the time he doesn't seem phased by them. Last week however he had one of his nose the size of a volcano and it was PICK,POKE and POP all day long. Except when it did finally pop, he completely freaked out. I had the fun of trying to clean it up and then explain the importance of leaving it be.  As he had picked scabs till they've gotten infected. I'd like to avoid gang green or MRSA if possible.  I know, I'm a Miss FussyPants like that.

Hormones and hands in the pants. (Sounds like a bad emo band name). You might be thinking "Oh my kid is five and already does this. Big deal."  Oh nooooo Honey. You have no idea. It's about to go through the roof. Times ten. Hands in the pants, hands over the pants, hands holding it as he walks, hands grabbing it as he watches TV, hands grabbing other things to put on his junk to check out how that feels. Yeah, all those vibrating toys you bought for sensory input.  Need I say more?

And can we just discuss the fun of dancing the "Mood Swing Mambo"?  Happy,sad,frustrated,pissy,grumpy,hyper, ecstatic and content all happen AT ONCE!  Oh you thought communication issues were hard when they couldn't tell you what Thomas the Tank DVD they wanted on. Just start stocking up on wine, whiskey and or chocolate for yourself now.

I watch the Kiddo often disappear into his room now. Usually to play music or goof around with his iPad.  I'm of the philosophy that as long as I don't smell smoke, I'm not knocking on that door.  I'm just let my little man do what he has to do in there. Mama Fry doesn't want to know.  He always comes out eventually looking for fries.

Saturday, November 8, 2014

Is he or isn't he?

I woke up yesterday and I'm scrolling through Twitter.  I see it's a buzz about comedian Jerry Seinfeld and his autism connection. (If you don't know about this, go Google.  There are about a thousand links to the story)  My first thought was "Incoming!!! Prepared to be Seinfeld'd all day". (That's what we bloggers  do with the latest hot story du jour by the way. Make it a verb. Last week I was Broccoli'd all over the place) 

I slapped it up on my private page and warned other bloggers for the assault. As the autistic Kiddo I live with had no school,  I was off line for a large part of the day. So I didn't see the boiling pot of emotion folks were having over this.  I was a little startled when I was catching up but then I remembered this is the autism online community. We love to argue! OK, passionate discourse sounds nicer.   I understood the divide but at the same time I was all "Meh."  Of course I'm not "Meh" enough to not jot down a few thoughts on the subject. 

"Self diagnosis?!? How can he diagnose himself?  It's not real."  I hear you. However, I know a lot of adults who found out they too were on the spectrum when their kids were getting screened. Through lots of research and time spent with it, they self identify. Some pursue a formal diagnosis but many do not. Why? Cause it's not something they need on paper because they currently don't need accommodations or therapies.  And frankly a lot of us started diagnosing our own kids when we started the journey with them.  We don't know the full story that led him to that point. He may of said it and it could have been edited out for all we know. Sound bites rule the media world. Who knows? 

"If he is he's too high functioning" "High functioning" comes with its own set of problems. They aren't the ones we know in this house but it doesn't make them any less valid.  I'm not about to tell him "Hey Jerry! You're not the right kind of autism."  Aren't we kind of forgetting its a spectrum here? So yeah, if he is, he's still got legit problems. Assuming he actually has it, which we still don't know by the way.  I'm not about tell somebody their feelings aren't important enough because my kid is more autistic than him ergo we have more autism street cred.  

"He doesn't know my autism. Come to my house and see." Well really you could say that to anyone. No one knows the autism you live with till you do. I suspect you could come to my house and be equally surprised by the autism that lives here.  I bet if you had me over I would be too.  That's how this spectrum rolls.

"How could he do stand up?" Easy. Scripts. All his humor is observational. If you're familiar with his show or comedy, most of his routines are rants. Long diatribes of his being baffled by many different social situations. Tiny little details about convention that made no sense to him. His opener line usually being "What's the deal with...?" He took his over thinking and ran with it.  He saw a platform on a stage.  That's cool by me.

 "It reinforces stereotypes about autism being only one way." Well I can't argue with you there. Media loves them some feel good viral stories of autistic kids doing cool things. They're usually all high functioning too. Again, I'm not about to complain to the higher functioning autistic for being noticed or heard by media. Yes, a little more balance would be a good thing.  I cringe every time someone sends me the story about the kid that can draw the entire NYC skyline.  My kiddo can barely write his name, with help. 

"He has a responsibility as a celebrity to..," To what? Be a medical expert? Hell no, he's a freaking comedian. That's what he gets paid to do. Remember when I said a few blog posts ago to "leave science to science."  That applies here. Not listen to the guy that created the legend of the Soup Nazi.  This is when we need to play our part in this and remember the source.  Experience is valid but unless he went to medical school after his TV show wrapped, I'm not looking to this guy for information.

Then my favorite, people worried he was trying to be autistic to get trendy. Holy shit. I had no idea Autism was en vogue this season. Dudes, until a Kardashian claims it, I don't think we have to worry to much about this.  When that happens, I will join you in your outrage.

I'm sure some of you will feel very compelled to leave tons of reasons why I am wrong. Why he is wrong. That's fine by me. I had my say. Now you take your turn. At the end of the day, I really don't give a crap if he is or not. Selfish reasoning, I'm not his IEP advocate. I'm not making his sticker chart or writing social stories for him. I'm sure Jerry will be just fine. No matter what his neurology is.  This isn't my up in arms moment and by next week a study will come out about how it's all the mother's or father's fault that their kid is autistic and this will be old news.