The 10 Commandments of Autism Parenting

Okay, so maybe autism isn't exactly a religion but it sure is a way of life.  All it takes is one person in the house to be living with it and everyone else converts to it too.  I guess you could say my Kiddo is my spiritual guru.  Sure wish the services didn't start so damned early in the morning though but he makes up for that in pushing me to be a more creative parent.  The Church of the Kiddo has enlightened me in the following ways.

1) Thou shall maketh and keepth the schedule.

My kiddo doesn't have much control over what happens most days. He's not an adult so he's not in charge.  (As much as he feels otherwise) So I have to honor the little things I can keep constant as much as I can.  If watching the "Hot Chocolate" scene in The Polar Express every night means so much to him, well I guess I'll just being hearing Tom Hank's voice in my sleep then.

2) Thou shall remember it's not personal.

It's hard not get hurt when your kid doesn't say "I love you".  It doesn't mean they don't.  They just show it differently.  Don't take it as a slight.  They're going to do a lot of things you don't quite get and it's going to make you wonder why.  It's what they need to do.  It's how they cope.

3)Thou shall remember you are a parent,  not perfect.

You're going to screw it up because let's face it, 90% of parenting is making it up as you go along.

4) Thou shall throw out the "typical" milestones.

"Oh my God!  My kid is four and still not potty trained!!" Yeah?  Probably won't be at five or even later.  Dudes, you got to get your Elsa on and "Let it go!".  Stop comparing them to typical kids.  If you are still referring to the parenting books, I suggest you donate them to your local library.  Those rules no longer apply here.

5) Thou shall STOP comparing your autistic kid to any other autistic person.

They're all snowflakes. Different.  Blah, blah, blah.  You know the deal.  You know the autism you live with.  That's it.  No lumping them together.

6) Thou shall remember it is not a martyr competition.

Nobody wins a trophy for most amount of suffering and it's very easy to feel bitter and resentful.  Especially when you hear about other's people and their kids.  I know.  I've done it.  It gets you no where.  Feel the feelings, sure.  I won't deny you that but move the Hell on.  When someone is talking about their kid, don't try to one up them on how it's worse for you.  They are sharing their equally valid feelings.

7)Thou shall not beat thyself up over not getting anything done that day.

Yes you did.  You raised your kid.  You fed them. You gave them clean clothes.  You picked up those same clothes when they stripped them off and had them get dressed again.  You turned on favorite DVDs.  You downloaded apps on their iPad.  You said your lines in their scripts.  You put them in showers.  You chased them into bed five times in an hour.  Trust me, you got stuff done.

8) Thou shall learn to say "No".

To your kid, to your spouse, to their teacher, to your family, etc.  Sometimes your butt needs a break.  Chuck the guilt that you're not the class mom.  Don't feel bad if you pass on going to some overcrowded family get together.  You can only do so much.

9) Thou shall redirect, redirect and redirect.

OK, some of the behaviors aren't the best.  They can be down right hard to live with but you just can't expect them to stop without giving them an alternative.  It's not just "Stop!".  It's "Stop and here, let's do this instead.".  Lather, rinse, repeat.

10) Thou shall listen to thy gut.

Sure, you have questions but I bet you already know many of the answers.  Trust yourself.

Now pardon me as I go make another side of fries as an offering to the autism gods.  ;-)

All the things I'm suppose to be.

On any given day I am cast to play several roles at once and I have no understudy.

I am suppose to be an autism information help desk fielding questions at the worst possible times like trying to get a melting down kiddo off the floor.  "I'm sorry.  Did you say have I read Jenny McCarthy's books? I couldn't hear you over the screaming."

I am suppose to be completely unaware that there is a young autistic man that can draw cityscape from memory as someone with the best intentions posts that picture meme on my Facebook wall. I"m suppose to be happy that they thought of me.  I'm suppose to not mention my kiddo can barely sign his name.  Or that there is a young woman named Carly who can communicate through a laptop.  I'm suppose to not mention my kiddo prefers to communicate through scripts of conversations he remembers from two years ago but I'll keep getting these sent to me with the idea I've never seen them.

I'm suppose to be an advocate for my son at school while not being a pain in the ass.  I haven't managed that one yet.

I'm suppose to watch the TV show Parenthood.  I haven't watched a single episode and I probably won't either. I haven't read "The Reason I Jump" and at this rate I'll be 75 before I get to it.  I live with autism.  I'm not so eager to read about it or watch it on TV which is funny because I expect you all to read this blog. What can I say?  I'm quirky like that.   I just like to escape with a mental vacation.  Pardon me if I'd rather be watching Downton Abbey.  Although let's face it, I'm pretty sure Sherlock is an Aspie. (And a cute one at that!)

I suppose to teach my son to be independent and yet I know there are some things he will never do.  I'm suppose to never run out of motivation to keep at it.  I'm suppose to be the one who keeps the momentum going.

I'm suppose to be the special person that God gave a special child too.  Or a special child has made me a special person.  I call bullshite on that.  I got what I got.  I'm not a saint.  I screw up just as much as I would have if my kiddo was typical.  There is no halo over my head.

I'm suppose to know what that meaning is behind every behavior he has even when I"m not present to see it happen.  School, I get it. I'm fluent in "The Kiddo" but seriously, sometimes I have no clue.  You're there.  You will probably figure it out before I can.

I suppose to be a wife, a daughter, a sister, and a friend as well.  I sometimes have a very hard time balancing all these titles as well. My apologies if I suck at it.  I'm really trying.

I'm suppose to be this beacon of positive attitude when on most days at some point I panic/cry/scream in frustration at what's been handed to us.

I'm suppose to make dinner tonight and there's a really good chance I won't remember to take out something to defrost. My very patient but equally exhausted husband will eat whatever I do rustle up and will sweetly not mention this is the fourth time this week I made pasta.

I'm suppose to keep a house and do the laundry.  All it takes is the kiddo to be home ten minutes from school for all of that to be undone.

I suppose to be asleep but insomnia has other ideas.

I suppose not to care what others think of me but I do.  I can get 99 comments on a post and it's the one negative one I will be thinking about later. (A fun thing to do when you have insomnia.)

We're about to start a two week break from school so I am suppose to be the entertainment director as well.  He's asking me to schedule what he will eat for lunch each day already.  I'm trying not to panic.

I suppose we'll just order another side of fries. :-)

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.  ;-)

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.  ;-) 

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.  :-)

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.  ;-)

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.

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.

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. 








 

Jinx

I am going to ruin this as soon as I click on "publish" but I have to talk about it.  I think, just maybe, the medication switches are starting to work with the Kiddo. 

I know. You are screaming at your smartphone or laptop right now that I am jinxing it.  I know part of me is like "SHUT UP!!!  SAY NOTHING!  YOU"LL SCARE OFF THE CALM!!"  The other part of me is grateful for a chance to exhale and think "OK, so maybe this is gonna work."

As an autism mom, I feel like I am trying contain a thousand of small fires on any given day.  To think that just maybe this will help put out of few is pure joy.  Not just because I'm freaking exhausted of walking around here on eggshells.  I hated seeing my Kiddo so flipping miserable.  It was like a thousand knives stabbed in my heart daily.  It sucks!

Plus, if Kiddo ain't happy, ain't nobody happy.  I mean no one.  Not even the dogs.  We were all walking around not wanting to breath the wrong way for fear of setting this kiddo off.  It's a crappy way to live. 

Monday is when I first noticed just how pleasant he was being.  He asked quite nicely to go outside to our yard after school. I said yes and brought out snack with us.  This seemed to delight him to bits.  He ran laps around the back with one of my dogs.  Dinner was breeze.  (He actually cleaned his plate twice!) Showered and pj's without an issue.  Goofed around a bit and off to bed with a big "I love you". 

Tuesday, more of the same.  He did have speech after school and had his usual "Hit the wall, it's been a long ass day" point of stopping during the session but that's pretty much the norm for him.  It is a long ass day at that point.  But we rallied, I suspect the pizza I picked up on the way home helped and again went to bed with no problems.

Now this morning, Wednesday is our HELL DAY.  A smidge sensory seeking but so much happier than he has been on those mornings.  Tons happier! Despite waking up at 4 freaking AM.  But I sent him off to the bus skipping so maybe, just maybe it will be a good day?  

Please let it be a good day.  I just need a win.  You know what I mean?  Just a little "Wednesday, he was fine" win.  I hate how "hump day" has become the day we dread.

Oh some of you are probably thinking "Well, what's with this day? What's different?"  Yeah, we don't know.  The only possible difference is a gym teacher that is no longer at school but I call bullshit on that one.  The kid has been in early intervention/school since he was two. Do you know how many freaking teachers and therapists have gone off on maternity leave?  Seriously, he's like a fertility idol at this point.  New people all the time all over the place.  He doesn't care.  He never has. 

Either way, I bought a six pack of hard cider.  I'll either celebrate later or cry into it.  Fingers crossed!

From A to Z

This week at French Fry Inc. we added another set of letters to the mix.  OCD (Obsessive Compulsive Disorder).  I can't really say I am surprised. This is pretty common with kids with ASD. Yay, we're just like the other cool kids!  We hopped on the ritual bandwagon.

I pretty much felt that these letters were going to be brought up when we went for our annual check in with the developmental pediatrician. Once it was said aloud though by the doctor, well I will admit to feeling a little sad.  It's just another set of letters connected to my kiddo. I'm kind of convinced we're collecting all twenty six letters of the alphabet with this autism life.  All lined up nearly in a row because Hello, autism.

The scripting is controlling his life.  I now see him having to touch everything when he enters and leaves a room. A knocking of his knuckles on the hallway a certain number of times and if he doesn't do it he will circle back and walk down the hall again to get those knocks in.  And let me tell ya, those meltdowns I have seen are starting to make a lot more sense now.  Well at least the triggers to them.  I still don't get why he has to say "Uncle Riiiiiich" in this loud semi growling voice no less than 946 times in a row.

I've always been kind of cool about the stim behaviors. He needs to pace up and down the hall after school for a few minutes? Fine by me.  Have at it. We all have our ways to cope.  It's like some of these behaviors have really amped up and are just taking over his life.  It's kind of breaking my heart when I see him like that.

The doctor suggested another medication and we're going to give it a go. Prozac. Yep, just like his dear old mom. I wonder if I can get it in bulk at Costco. I'm hopeful it will help.  At the same time this is the third medication my kid will have to be on. For some reason, this is really chapping my ass. Three medications. Just to be able to function.  Just to be a ten year old boy.  This is where I sit there and wonder about those folks who say "Autism is a gift.".  Really?  I'm not sure what kind of autism you mean here. The one I'm seeing, yeah I'm not getting the whole wrapped up in a bow thing.

I see my kiddo struggling.  A lot. I love him. Quirks and all. I'm just not a fan of the ones that seem to paralyze him.  That stop him from just being in the moment. Life is pretty awesome and I hate to think he's missing it because he's so wrapped up in anxiety and sadness.

Just picked up the medication. Oh the fun of hunting down the liquid version of it because he still has huge amounts of anxiety over putting a pill anywhere near his mouth, let alone in it.  I see the pharmacy has slapped on warning stickers not to operate heavy machinery until we see how his body reacts to it.  Does the iPad count? Oh and not to drink alcohol.  OK, note to self, my ten year old can't go to happy hour at the bar tonight.

Thank God I know I can have a glass of something tonight.  I'm gonna need it.

A few little bits of awesome

It's been an expensive week here at French Fry Inc.  First, the furnace decides it doesn't need to work on a cold Monday morning.  Then, I have to schedule my car to get a big repair done.  Finally, the iPad aka THE LOVE OF MY KIDDO'S LIFE, decided to die.

I'm not going to lie.  I"m barely keeping my head above water but I am prompting myself to remember that while these are problems and legit ones at that, they are also fixable.  Even though we're probably going to eating a lot of Ramen for the next few months.  I'm still going to panic and freak out.  Every now and then I'm going to go hide in my laundry room where my family never goes and play Fat Princess Piece of Cake on my phone and center myself.  I'm going to also list some of the more cooler moments with the Kiddo lately in my head.  That always cheers me up.

1) Yesterday during speech therapy he saw what last Bingo piece he needed to win.  So he tapped into his inner neurotypical 10 year old boy and cheated.  Yep, fixed the game so he could win.  I'm sorry.  I know I shouldn't be laughing at that but dammit that's funny.  What a sneaky son of a gun.  He wasn't subtle about it though.  Did it right in front of the therapist.  No shame.  Just like his Ma!

2) This morning is the dreaded Wednesday.  He hates this day at school. Just can't stand it.  Doesn't like the fact that the gym teacher he loved is no longer there to teach that day like he did last year.  (Selfish teachers and therapists going on with their lives and their careers.  Don't they know they aren't allowed to ever leave till the Kiddo does?)  So what does he try to tell me this morning?  That's it's half day of school and the part that is closed just happens to be the part he hates the most! Isn't that a convenient?  Lying right through his teeth!  That's some problem solving!

3) But my favorite part of the week is strangely during a meltdown. Let me explain.  Sunday the kiddo was bouncing off the walls.  I'm not sure what was going on but he had energy for days.  His impulsive drive was just cranked all the way up.  He decided it would be a really great idea to balance one of our bar stools at the top of a small set of steps and then sit on it.  He then added an extra element of danger to it by then rocking on the stool.  As you can expect this idea did not end well, it ended in tears.  He stumbled down the steps.  Landed on his backside and got a good shock to boot.  All of this happens in the span of like five seconds.  I run to him to make sure he's okay.  He ran and gave me the biggest hug.  Collapsed into my arms crying.  Why is this a big deal?  Because up till now if he hurt himself, he didn't want anyone touching him at all!  He would beat me if I tried.  You know how much that killed me as a Mom?  Like Mom is suppose to swoop right in and hold crying kiddo to my chest and comfort him.  All the sudden now he wants me to do that??  Holy cow Kiddo!  I'm so glad you fell!  I get to go with my instincts for a change. It was really nice.

I hang on to these little moments with him with a white knuckle grip.  Sometimes these little steps are the only things that gets me through a hard day.  Hell, who am I kidding here?  A hard hour!  We've come so freaking far.  Yeah, there's a bazillon miles to go but I have these little bits of awesome to hold to keep me company on the road.  I'm always so fearful that one day the progress will just stop.  I try not to let myself think that way but it's always sitting there in the back of my head.  I often wonder does progress have a shelf life?  God I sure hope it doesn't.

All I know is I'm probably the only parent that's taking their kid out of for a side of fries for lying, cheating and crying.  Good job Kiddo.  You made a bad week good again. 

Paper gowns and Prozac.

Why is it the blog posts that are the easiest for me to write are the ones that are the hardest to hit "publish"?   I'm going to though.  I want to talk about this.  Here we go.

This is a little tale from me about the time my Pap smear became a talk about Prozac. 

I will admit it.  There are times I do not talk about autism or our connection to it at all.  Mainly because where or what I am doing does not warrant a need for discussion and I kind of enjoy that now and then.  My eyes and ears are forever focused on all things autism and it's nice to get a little break.  Frankly, I never thought I would be having a discussion about caregiver burnout with my lady bits doctor.  Yet there I was in my paper gown and socks having a good cry about being completely overwhelmed and utterly stressed out.  Having now had an ugly cry in such circumstances, awkward does not even begin to describe it.  

It started out innocently enough.  My doctor is the one that delivered the Kiddo all those years ago.  So she was rather amused to see his name on the school roster where her kid attends.  (She had a baby the year after me.)  We did the chit chat thing where we both pretend it's completely normal for her to examine my boob and talk about the PTA and whatnot.  Then she asked "Oh he's in the same grade as mine? Isn't he older?" and then I have to let the cat out of the bag about why he's in the same grade but really not in a grade actually but just does inclusion subjects with that grade and all the autism stuff came a tumbling out with it. 

And I really did not want to talk about it.  At all.  I wasn't in the mood and at that point in my life barely hanging on with a white knuckle grip.  I didn't feel like being all cheerleader Team Autism Awareness when I was just trying to get my annual done by the gyno.  Since I have no poker face or filter, I guess you could say my rapid fire explanation and sudden change in mood tipped her off I was a tad stressed out.  It then came to a header when she gently suggested I try getting up an hour earlier than the kiddo does in the morning so I could meditate and that is when the dam broke.  

"Get up an hour earlier???  He gets up at 4AM now. You want me up at 3??? Let me tell you something Doc, the only thing I want to be doing at that hour is to be unconscious!"  Cue the tears and a very confused doctor handing me tissues.  

Despite not wanting to raise awareness for living with autism, here I was doing it.  Her next suggestion was I open to trying medication.  It was something I had given thought to previously but like most moms, taking care of myself gets shoved aside.  I knew I had to be healthy to be a good mom.  This includes mental health.  Every person in the Kiddo's life looked to me to keep the momentum going and I wasn't going anywhere at the moment.  I was stuck in the mud.  I needed help.  More than just a simple babysitting break now and then.  More than just a chin wag on the phone with a pal.  Brain chemicals meant big guns.  He was really young and I knew I had a lot of years ahead of me on this path.  If  I had a sinus infection, I would never question taking medication for it.  Why would this be any different?  

Now I won't say that every one should take them.  Not at all.  Different strokes for different folks.  For me, it's helped.  It's just something I need to do.  I am a much better wife and mother on them than off.  (Yes, I tried going off for a while to see and decided that was not a good idea. I prefer not crying every day.  It fogs up my glasses.)   I never really hid this but at the same time I wasn't walking into rooms saying "20mg Prozac in da house!". But I keep seeing so many news stories about caregiver burn out and it frightens me.  It scares me to think that folks are not getting help they need in order to take care of others.  Again, medication won't solve all your problems but it sure can help you get through the day to day grind of it all.   I don't want to be a news headline.  I want to be a mother.  His mother.  The mother he deserves.  

So even if you think "I don't have time.", you do.  Make it.  Nothing is more important than you if you are dealing with depression and how to cope.  Even if you are like me and don't go to the doctor unless you are sick, I bet you go to your gyno annual. (Well, my female readers.  Sorry fellas.)  Talk to that doctor.  They can talk about options with you.  You might find yourself feeling awkward talking about this in a paper gown and socks but know I did it too.  We'll be like twinsies.

Why am I even talking about this very embarrassing moment in my life? Because we need to talk about depression and stress.  We need to talk about mental health.  We need to talk about burnout.  We need to not be shamed or made to feel guilty about our feelings.  Raising an autistic child is hard.  One thing improves and and another problem or challenge pops up.  We're forever putting out fires and advocating for our kids all while doing it in on little to no sleep.   We cannot let the idea continue that we are these blessed saints chosen to be these kids parents because we never lose our cool.  We are no different than any other person on the planet.  We screw up, we yell, and yes, we even get depressed.

We need to advocate for ourselves just as much as we do for our kids or we are no help to them at all.  A side of fries can only do so much. 

WTF Wednesdays

I'll get right to the point here.  Every Wednesday at school the kiddo is losing his shit.  Lots of scripting.  Lots of waxing nostalgic of meltdowns he's had previously.  So much crying and I don't have a clue as to why this is happen.

The teacher and I have been emailing a lot.  I'm asking questions.  She's asking too. There's a lot of information on the table about this but for now there is no clear pattern.   He's happy and content getting ready for school in the morning.  Skips to the bus with barely a glance to me and off he goes.

One could say "Well this is on the school's watch.  How are you suppose to know?"  But this is autism. Even when he's not with me, he's with me. I'm never not on duty.

It could be something as simple as he doesn't like a certain subject that happens at school that day.  It could be something as the bus takes a different route to school on Wednesdays that sets him off. Or it could be he often gets so fixated on routines and schedules that he is simply stuck.  Twenty five Wednesdays ago he might of had a bad day. All the sudden now he feels the need to recreate that meltdown like some sort of autism historical reenactor. The most frustrating part of this is I won't find out just by asking "Dude,wtf?" like a typical parent/kid exchange might go.   (OK, it would be a cleaner version of that but you know what I mean.)

It's pretty much Blues Clues without the clues or a handy dandy notebook.  It's Tired Mom who's had it being Sensory Sherlock with a smartphone.

Is it a subject?  Is it the principal's color of his tie?  Is it the humming buzz of the school's furnace kicking in?  Even if I do figure it out, he still has to learn to deal with it.  As much as I am always advocating for accommodations, sometimes he has to learn to accommodate us too.   Kiddo, I will always try to help but somethings are just beyond my control.  Even though you seem to think the keeper of the password to the Wifi and the iTunes account must be pretty powerful, I do have my limits.

While the kiddo has no problems in the verbal skills department, it's where and how he uses them that provides the challenge.  Plus add a dash or more accurately a full dose of autism and I'm going to have to pry that conversation out of him.  Even then I'm more likely to hear him scripting along to what the gym teacher told his class a week ago.  (Hula Hoop Time!)

This is where autism sucks.  It's not a gift that I can't figure out why he is so unhappy every Wednesday.  This is not some adorable quirk.  My kiddo is miserable and I have no idea why.  As a mom it pretty much feels like having your heart ripped out of your chest and stomped on.

Why can't it just be easy?  Like ever?  Why can't the reason be something like "I'm tired from partying the night before Mom.  You said party night was always Tuesday nights at college cause no one took double course day on Wednesday."  OK, so maybe it would be a little alarming to hear from my ten year old that he was simply too hungover to be upright let alone be a model student that day. Give me something here Kiddo.  I have no idea what's going on and like it or not everyone is going to ask me first what's up your craw.  Good lord, this must be what it feels like to be a PR for Charlie Sheen.

Help me to help you kiddo.  Really.  There's a side of fries and a Yoohoo in it for you.                                            

6 Ways to keep from losing your Sh*t!

I think the toughest part about parenting is there never a point when you are done.  When I worked outside the home there was a defined "punching out" time.  Hell, you can't even bank on this kid sleeping.  It's pretty much a life of being permanently "on call".  I could be waking up at the butt crack of dawn to make him breakfast or finding out that he was sick during the night and his bedroom looked like he recreated Exorcist movie in his room and then went back to sleep.  (Which he's done. Twice.)

Life decided to throw me a curve ball or in autism's case, a series of neatly lined up ones.  Autism cranked up our lives to "11".   Congrats Mama Fry!  You just got through twenty months of sleep deprivation, spit up, diapers and hormonal mood swings.  You just LEVELED UP!  

I can't say I'm good at this but I don't think I suck at it either.  Some of you seem to be under the impression that bloggers have their sh*t together, especially the autism ones. That could not be farther from the truth.  Have you met some of us?  We're like five gallons of crazy in a two gallon bucket.  I mean I'm sharing my dirty details here.  Clearly something is a tad off with me.  ;-)  However, since I have a little autism tenure and you seem to not question my autism street cred, here's my list of ways to keep from loosing your sh*t.

1) Accept you have already lost your sh*t.  
It's already gone.  You are no longer balancing it, afraid you might drop all your balls.  Unless you are a professional juggler, then maybe you can keep them up there a little while longer but even they get tired and stop.  At the point you are at right now reading this you have already cried your eyes out, screamed, raged at the deity of your choice, prayed to them, bargain for anything to just make life "normal" again, ate your feelings, drank them too etc... You see where I'm going with this.  So the hang up of not loosing it, channel your inner Elsa, and let it go

2) Accept that you will have many more mini breakdowns over this. 
It's actually quite freeing to really lose it.  I call it the "ugly cry cleanse'.  Scream in the pillow.  Beat it up too. Throw your pity parties for one.

3) Realize the sh*t you are trying not to lose is in fact sh*t that makes you sad. 
 Forget about worrying about loosing your sh*t for a moment.  Let's just acknowledge for a moment just how hard this sh*t is.  It's ridiculous what we go through on any given day.  I'm not just talking about our kids and their more challenging behaviors here.  I'm talking about all the stuff we deal with day in, day out.  Appointments, teachers, random looks or comments from strangers.  It adds up.   Allow yourself the acknowledge those super sad feelings.  They suck.  I'm not going to lie about that.  I'm not going to ignore them either.

4) Ask for help.
You remember all those nice family or friends at the start of all this stuff that said "If there is anything I can do to help..." Call those favors in. Now don't expect them to show up solving all your problems but maybe you need to share your sh*t with a friendly ear.  Maybe they can watch your kid for a few hours while you take a walk.  Or go to the doctor and have that nice friendly medical professional suggest what's a good anti depressant to take.  Then go fill that prescription and try it because if it was any other part of your body having a hard time right now you would not hesitate to take a medication for it. Hate to break it to you Honey but there is no prize for "Most Stoic" here.  Ask for help.

5) Allow yourself to screw it up.  
Guess what?  Something your researched, something that was suggested to you to do for your kid, it's wrong!  If you're really lucky, some day your kid will grow up and ask you "WTF???" about it.  That's just the way this sh*t rolls.   We follow our gut instinct and do the best we can with what we have.  Sometimes that is still not enough and we don't know that right away.  Sh*t happens!

6) You didn't really lose your sh*t.  You just misplaced it.
Take a deep breath.  Clear your mind.  Where did you last see your sh*t? Call it a do over and just try again. With this sh*t, it's all we can do.  :-)

5 Questions I Keep Getting Asked About Autism

Maybe it's because my Kiddo is ten and I've been doing this a while now.  Maybe it's because I have this Facebook page and folks think my autism tenure is "official".  Or maybe it's because I'm just a loud mouth and have no problem sharing my opinions even when I haven't been asked.  No matter the case, I have been a walking Autism Help desk for some time.  It's kind of like the Apple Genius Bar except I actually have a real bar in my family room and I've been tempted to bring a flask to an IEP.  (Can you imagine that drinking game? Everyone takes a shot when someone says "appropriate". I'd need a new liver by the end of it.)

All the same, I get many "Frequently Asked Questions" and I thought "Hey, that's some good blog fodder right there! I have to write something snarky and funny again because my posts have been some downers lately." 

1) What do you do when your child melts down in public and you get that look or people say rude things?  

The good old communication mantra of "First this. Then that.", applies best here.  First, get the Hell out of Dodge or Target or Burger King or wherever. Then, screw 'em.  Seriously, do you have the time to give a flying f here?  Nope, your kid needs you.  I'm all for standing up and advocating for my kid, when I can do so successfully.  That won't happen when I'm trying to talk over his screaming or preventing him from finding out which piece of furniture is most aerodynamic.  Just go home and forget about those people. I can guarantee those people have forgotten about you five minutes after you left. 

2) How do you get the Kiddo's teachers/therapist to talk to you so much?  I never hear anything about what goes on at school.

Well mainly, I am incredibly nosy and gladly declare myself as a "PITA" aka Pain In The Ass.  The communication notebook is the first step and if your kid gets additional services through the school, get one of those going for each of those folks too.  Be it a notebook, email, once of month report.  Yes, you can get that written in the IEP.  We had to do that for an OT that no longer works at my son's school.  I never heard from her.  She never came to IEP meetings.  For three years.  I had enough.  I had a monthly phone call/hand written report put in.  Never be afraid or think "OH I don't want to be a bother."  Squeaky wheel Fries! Squeaky wheel.  Also, it's a modern world and pretty much everyone has a smartphone.  I find emails work really well with my kiddo's teacher.  I can fire one off at night during a commercial break for The Big Bang Theory and wouldn't ya know it I usually get a response by the time the show is done.  Everyone is checking their emails.

3) Don't you worry about his diet?  Why don't you do gluten free/ casein free?

I'm a mom.  I will always worry about my kiddo.  That's a given.  As for what he eats, I'm just grateful anytime he does actually eat.  I'm not so picky anymore about what is getting in his mouth.  Just as long as it's food and not the charger cord to the iPad or whatnot.  As for the diets, GF/CF didn't work for us.  That's great if it did for you but it didn't do squat for the Kiddo. At his worst, he was down to about three solid foods.  I'm going to take two of them away?  Fugetaboutit! His sensory issues with food trumps dietary restrictions.  He's finally eating more and I hope to keep it that way.

4) My kid is four and not potty trained.  What do I do?

Hate to burst your bubble sweet cheeks but they will probably not be trained by four, five or six.  This is autism.  All standard rules about children and milestones no longer apply.  Remember, it was your kid not meeting milestones that probably first got you on this road to finding out about their autism.  This not meeting age appropriate milestones continues.  Yeah, it sucks.  I still deal with reminding my son to go poop and we wake up to wet sheets still quite a bit. The more you push, the worst you will make it.  Chill the Hell out and yes, ask the school for help.  Of course you can get that in the IEP.  They have your kids for six and a half hours a day.  Adding in a toilet routine is no big thing.  Just remember it is just going to take way more time.

5) Oh I would never do that. Why do you do/think/feel...

Oh really? Never say never.  I used to say that too sport.  One thing I have learned is that I know nothing.  I can have an opinion one day and it can change the next.  Perhaps your kid isn't the only one that's a bit rigid.  M'kay?  I know lots of things are set in stone but not everything.  Opinions change.

Now what does Mama Fry always say?  You do you!  Remember that above all else.  :-)

It sneaks up on ya.

My nephew is a freshman in high school this year.  The same kid I used to sit on my mom's kitchen table "lazy Susan" and spin him like a ride is now about a head taller than me.  Despite a deep voice and the start of a mustache, it was the picture of him in his marching band uniform that made me squeal with delight.  He is so stinking cute in it!  Mama Fry was a choir/theater kid.  It's nice to see that popping up in the next generation. I can't help but be proud of him.

And that's when it sneaks up on me.

It was the simple comment made at a family gathering for his birthday.  Being in marching band was a good resume builder for college applications.  Of course I agreed.  It is and it's never too soon to start thinking about that.  Except we won't be.  College isn't in the cards for us.  I don't think I would mind that so much if I had a more firm idea of what would be in the cards for us.  That's still very much a great area of unknown.

Yeah, he'll probably get a job.  I have no idea what and all I really want it to be is something he likes doing.  He does enjoy helping out around here and his smile of pride in himself is a mile wide.  I will be proud when I see him so proud.

But I can't help but wonder how many more conversations I will have with other parents where I just nod my head knowingly to their concerns and topics about their kids when inside I'm really kind of faking it.  It's simply not my world.  Of course, when I start talking about ours, I'm sure they are doing the same thing.

Sure, what they have going on is valid stuff.  No contest winner here for most worried parent.  Plus, when I'm talking to these people about their kids of course I want them to do well in life.  I am happy with their joys as much as they are in ours.  It just still sneaks up on me how different our worlds are all the time still.  I love watching my nephew's videos of his marching band play.  I love watching his younger sister act exactly like me when I was that age much to my brother's chagrin.  (Stock up on beer now Bro.  You know what the teen years are going to be like.)

I guess I'm just a little weary of just walking along and then all the sudden it's like autism runs up and smacks me upside the head and then runs off again.  If you are ever wondering why I am so spacey,  it's not just the sleep deprivation. I'm just trying to remember my lines while switching off the autism 24/7 part of my brain.  You see, I often don't remember what road we were suppose to be on because my tour guide didn't come with a map or a GPS, despite an ability to remember every exit we have ever taken on a road trip plus where it leads.  So pardon me if I grow quiet as I gather my thoughts.  I didn't duck and autism slapped me.  Talk amoung yourselves as I shake it off.  I'll catch up!

(Seriously though, to my brother.  I see her dating musicians.  Be afraid.  Be very afraid.)

Mo' Progress. Mo' Problems.

Do you ever do this?  Your kiddo finally does something really amazing.  A thing you, the teacher, a therapist etc... has been working on with them FOREVER.  They finally do it.  You're in that sweet spot of being on top of the world over it and then BOOM! Along with this new found skill suddenly comes challenges and problems you could never of imagined.  Then you voice your frustration.  Be it online or with another parent who has a special needs child and you get a met with "Well at least your child can (fill in the bland with the skill of your choice)".  So then you get to juggle the feelings of excitement, frustration, and guilt all at once.  It's awesome! NOT!

Hey, I'm not looking a gift horse in the mouth here.  Progress is awesome but it far from perfect.  All feelings are valid but let me tell you something.  No one wins here.  No one.  There is no gold medal. There is no year supply of turtle wax.  No one pins a crown on your head.  Trust me if that was the case, don't you think I'd be rocking that look by now if there was?  Mama loves an accessory or ten. 

You see there is a double edge sword to progress.   It's not "Victory!"  and it's over.  All it's doing is introducing you to your next nemesis.  Allow me to share with you some of our progress and before you whip out that sad trombone to rain on my autism challenge parade, hear me out.  

Yes, the Kiddo is talking.  A lot more than he used to be able too. Don't get me wrong.  Having him be able to tell me "Want fries!" is a big improvement than just tons of screaming while I tried to figure out what the Hell he wanted.  However, I would say 90% of his talking is scripting/echolalia.  Really, how functional is it?  Not much.  He's probably almost always going to need someone to prompt him along in a conversation.  Otherwise he will be that adult you see one day having a conversation with himself.  Listen close, I bet you'll hear him quoting Lighting McQueen or Thomas the Tank Engine.    So yeah, I get it.  Your kid isn't talking. Yes, those feelings you have are valid but realize my situation isn't perfect here.  Especially when my kiddo is yelling "MONKEY BUTT" for 73935 time today.  

Great, he can tell time.  Yes, that's been handy.  Especially with getting up in the morning.  He knows the rule is he can't wake us up till 6am and he's been sticking with it. Even though I often wake to the sounds of him doing the countdown in the next room. (5:56! 5:57!)  However with this came an extra dose of anxiety.  If I thought he wasn't flexible about the schedule before, it's even worse now.   Trying to add something or change the order?  I bet hostage negotiators have an easier job than I do.   This ability which I thought would lesson his worry about the schedule has only made magnified.  

Your kid never wants to leave the house and would be content to play minecraft or video games all day.  Mine never wants to be home.  We are forever planning the next outing.  I am at least now able to schedule "home time" because he understands telling time like I said above.  However, like I said before, this is usually the kiddo walking back and forth in front of clock counting down the minutes till the time comes for the next outing.  Plus his running to get in my face to be reassured no less than 539 times that the next event will take place at the time planned.  Why yes, it's most restful.  I kind of wish he would get lost in a video game.  I know, I know.  What's this piece all about?  But honestly, you get what I mean.  I just want a break for a moment.  I would like him to play the Wii and me not have to dust it.  

My kiddo loves a party. Any gathering.  Going to some one else's house? Even better.  He's incredibly nosy and will look through all your rooms and stuff.  Now I love thinking the party doesn't start till we Fries walk in, I also know it's like walking around with a live grenade.  We're walking in blind to potential danger and triggers.  I'm not really sure what might set the kiddo off and then I find myself pulling a move out of his book with one eye on the clock, counting down every minute.  Finally when enough time has passed for it be socially acceptable to leave, I think we are all kind of relieved by that it's over.  

I know I should not complain about what he can do anymore than I should about what he can't.  I'm not perfect though and I find a good whine now and then is good for the soul.  Just remember that before you jump on my case for complaining there is probably something your kid has done recently that brought you joy and then new pain.  

I don't care what causes autism

I have a confession to make.  Are you sitting down?  Okay, here it goes.

I don't care what caused my kid to have autism.  Not one bit.  (Cue the dramatic music and GASP!) 

I don't give one flying fig why my kiddo is autistic.  It's just is what it is.  I don't need someone or thing to blame.  I don't need "closure".  I may need a nap but I don't need to know the kit and caboodle and all that autistic jazz.  To paraphrase Bob Seger here, I have "turned the page". 

Why this self centered attitude?  Simple, it's survival.  I have a lot of shit to do and I"m going to leave science to science.  None of those researchers every come here and start a load of laundry and empty the dishwasher.  So I'll let them do their jobs and use Google for researching new Crock Pot recipes as therapies for the kiddo are always around the dinner hour.  (Oh this chicken recipe has bacon in it. It's got to be a winner!)  

What about the other future families you may wonder?  Yes, I get what you are saying.  I have known a few families now that have become members of Club Spectrum.  It's hard to see it happen to those you care about and Hallmark has yet to make a greeting card suitable for the occasion.  At the same time, I can't take that all on too.  I'd rather just tunnel vision on doing what I got to do for my kiddo.  I'm all about helping out others and sharing basic tips.  Don't get me wrong.  I just think it's way better for any parent's psyche to spend twenty minutes shooting the breeze over the game last night or the this season of Boardwalk Empire than having an in-depth  conversation on medical research.  Sometimes we have to turn off the "All autism. All the time." part of our brains because dammit dude, my brain just needs a break.  

The Kiddo is ten. I have bigger fish to fry. We have a middle school transition that is quickly approaching.  Last week I discovered some hair growing on some places on him and he is starting to have teenage boy stink on him by the end of the day.  Puberty is coming and I will need to be sedated the day we have to figure out how to shave his face.  I can't even get this kid to trim his toe nails without having to sneak it in while he sleeps.  Can I shave him as he sleeps? Is that doable?   He still  can barely write his name.  You want me to read a hundred different articles and blogs online that folks keep sending me to see about what caused autism to show up?   That has to take a number.  He's growing rapidly here and I have too much to worry about than adding that.  Hell I can't even remember to take out something to defrost for dinner much less figure out when I can comb through miles of medical research on this subject.  My family can't eat research.   

So I am sorry if the question what caused your child's autism is still knocking at your door.  I just decided to close the door on that subject and I've been a lot happier for it.  Despite a life filled with routines and schedules, more freedom came with that choice too. I'm not saying for you to do it.  I'm not saying this is the only way of thinking that is right.  Like we say in Jersey, "You do you."  Just be open to the idea of shifting your energy off this one thing.  You might just thank me for it.

I accept cash donations as "thank yous". :-) 

Running on Empty

"Running on - running on empty
Running on - running blind

Running on - running into the sun

But I'm running behind"   Jackson Browne 

I've said it before. I don't have the "Mommy Mopes" about summer ending and school starting.  I have more the "Dear Lord, If I slipped the van driver a fifty, do you think she would pick him up a day earlier?" gene.  I don't wax nostalgic on my social media about how sad I will be to see him go to school. I don't cry at the bus as he boards.  I'm the Mom who's singing show tunes and dancing in the street in her pajamas and slippers.  Goodbye, Good Luck, Get OUT! 

Hmmm, I sound rather heartless don't I?  Well if you want me to be more heart full, I need a muthatruckin' break from my kiddo.  Yes, I know school is not babysitter blah blah blah... I don't expect it to be, not in the beginning of the year but let's be real here. You all know that last week in June they are phoning it in.  Folks at my kid's school who may be reading, don't get your knickers in a twist me saying this. You forget I used to work in a school.  It's okay.  I'm actually fine with it because seeing as my kiddo is an only child, the socialization alone is worth him going in those last few days too.   Plus, I really do need to soak up as much quiet as I can for the months ahead.  

This summer was an effing doozy.  I really don't know what else to call it.  We were busy and some really cool stuff did happen.  Like the kiddo finally getting the boot out of our bed.   It cost us buying a TV for his room that's nicer than the one in my own room but I say it was worth it.  We still have nights of him getting up and trying to wiggle his way in but he's accepted the fact I will zombie walk him back to his room, tuck him in and leave.  No middle of the night meltdown, I'll take it.  Some nights he doesn't even do that at all but I seem to stay up anyway waiting for him to come in just the same.  I don't suggest that.  In fact I'd really like my brain to stop thinking that will happen.  I'd really like to sleep.  I'm also confused by the fact I am getting up in the same place I went to sleep but I can't say I miss sleeping with Lighting McQueen and Tow Mater.  This husband guy I spend the night with now seems nice.

The anxiety though, that's gonna be my undoing.  His and my own.  I get it. He feels his safest with me.  He knows he can let it all hang out. He knows no matter how out of control he acts, I'll still love the adorable little sonofagun more than life itself.  I do. It's true.  I know I don't share pictures of him but trust me. My kiddo is seriously good looking.  Like Derek Zoolander "Blue Steel" male model handsome.  I don't know how anything that good looking came out of me to be honest.  We are at a point this summer where I would rather be Naomi Campbell's assistant diving from flying cell phones than take another day of his diva antics.  Yes, I am calling it like I see it.  My son IS a diva.  That freaks me out because I can't always be there to pick up the pieces and do the damage control.  It some ways maybe it's better he saves the meltdowns for me because I wouldn't know where to start if he was doing them for everyone else.

I have to be honest.  Living with autism in this house is hard.  Very, very hard.  I often feel like I'm running on fumes and walking on eggshells.  Sometimes I'm so tired of it.  It's not always the special gift from above.  It's not a shower of unicorn kisses.  It's not a puffy cloud of angels singing.  Sometimes it's a lamp being thrown at you.  It's pets that sigh when they hear the familiar start of a meltdown and hide from the wrath of the kiddo.  I have to juggle checking my anger that my latest purchase from Target just went airborne while making sure the kiddo is safe.  I have to calmly talk him down while talking myself down that this too shall pass.

Every start of the new school year I do get nervous when I wonder "What has he lost this summer?  What will the teacher email me about?  Will I get a dreaded phone call?"  The summertime regression BLOWS.  No other way to describe that.  I feel we are always behind on something that we now need to cram and catch up.  What are we not learning because we are too busy relearning what we lost?

All I know is come Thursday, the toughest choice I am going to have to make is what color to put on my toes when I go get a pedicure.  Hmmm, maybe I ought to wait a few days on that.  The nail shop will have a ton of other tired mommies who will feel compelled to be social and want to talk about their glorious summers and how sad they are see their kids back in school.  No wait, I have my ear buds and my phone.  Sorry gals, Mama Fry will be on a sensory break.  Talk amongst yourselves. Mame needs to refuel with a foot massage and some Jackson Browne.  

I have the best intentions.

"Oh my god! What if he reads this?  How can you write about your son like this?  Have you no respect for his privacy?"

Actually I do, you dirty pirate hooker.  Ever see his name or his picture on here?  Yeah, didn't think so.  So you can go have a seat over on the wench bench because I don't want to hear it. Get comfy. I have a few things to say about all this autism stuff.  You see, I have the best intentions with how I parent my kiddo and that's good enough for me.

I have fantasies of my son finding this blog and being pissed.  Rip roaring mad at me.  Yes, I would love him to be angry about it.  I would love him to feel embarrassed that I have talked about his poop.  Right now though, where he is, I'm not sure that he's ever going to understand or care what's being talked about in this blog.  Frankly if he did, I'd be freaking thrilled.  It would mean he is doing pretty damn well in his life.   So yeah, I'll take that risk.  This isn't about me talking about him behind his back.  This is about sharing our story so others can see what a real like autism house looks like inside.   If you don't like what it looks like to you, leave.

I have the best intentions when I take my son to feeding therapy.  Don't you dare tell me I haven't listened to what his needs are and what he would prefer to eat.  Hello? Look at the name of this blog for crying out loud! Trust me, I have listened FOR YEARS.  While others run out to the store before a snow storm for bread, milk and eggs, I am clearing the freezer section of microwave fries out.  I know we are about to dive into some serious cabin fever.  This is one way I can help him feel better about that. By the same time though, there is basic nutrition a growing boy needs, PERIOD.  So yeah, I'm going to do something wild like introduce a protein that isn't breaded and battered.  This isn't a case of him eating when he is hungry because guess what? He won't! I've watched him starve himself.  I have watched him dehydrate himself and seen the effects of low blood sugar. Feel free to have your opinion that it's not necessary or I'm forcing foods on him.  This is just the way biology works.  Sorry, the world cannot accommodate him by making french fries filled with all the vitamins a growing healthy boy could need.

I have the best intentions when I push him outside of his comfort zone.  It's not to accommodate me.  It's just something I have to do.  It's just something he has to do.  There are things in this world that cannot be avoided.  There are haircuts to be had.  Nails to be trimmed.  Clothes to be worn.  I will do my best to accommodate him with these activities but they will still happen.  So sorry Captain Pantless, grab a pair of jeans.  You're not going to school naked.  Your nails won't be longer than my own and your hair will be cut.  Like it or not.  There are social conventions that one must do.  As for style of hair, that's up to me till your eighteen.  Think I'm kidding? Nope, I'm not.  Even then if you grow it out long, I will bug you about it kiddo just like my grandmother did to my uncle her whole life.  That's just motherhood for ya.  Deal with it.

You see, my intentions are to prepare this kiddo of mine well enough that he can be ready for life as an adult.  I want him to have meaningful employment and maybe even live out on his own.  I'm not really sure that's going to happen right now but he's proved me wrong before.  So maybe he will.   I won't always be there and the IEP and it's accommodations only last so long.  There's a lot in this life he will just have to learn how to handle.  Life isn't always fair.  I'm all about giving him the tools to help him but bumps in the road will happen.  I have the best intentions to raise a kind child and one that other's don't think is a brat.

I have the best intentions every morning when I wake up and every night as I fall asleep.  There's never a thought that doesn't include him in the equation.  I accept my intentions might not always work out well but I do intend to keep trying for him, for me and for us.

Two steps forward, one step back.

"Hon, we need to talk about Kiddo.  I think we have to call the doctor.  Maybe discuss medication changes.  Or consult with a behavior therapist..."

I have the same exact conversation with my husband this time every single August.  Summertime regression has once again reared it's ugly head and I'm really thinking I need to be smart and apply for next August off so I don't have to watch it again.  The plot just does not change at all. I'm really tired of being exhausted, worn out, mentally drained, spiritually crushed and heartbroken. Because it's every damn summer.

I know. I know. School.  Change of routine. All this time off.  The start of tween years and the angst that comes with it.  Yadda, yadda, yadda, I should not be surprised.  Knowing all of this makes it no better.

We decided to do a little road trip.  Clearly the husband either got me drunk or struck when I was having some "autism amnesia" to agree to this after the "Hottest week of June on record and a car air conditioner that died incident".   He sworn it would be fun.  He sworn he got the car fixed.  He convinced me that it would be fun.  That it would be a break and something to do with the long rest of break ahead.  I wouldn't have to cook, clean, do the therapy juggle and keep the kiddo entertained for a few days.  Plus I started see all the folks in the my circle do their own end of summer quick before the kids go back to school plans and I was all "Me too! Me too!"

The drive here wasn't too bad.  Six hours long and only got HELLISH the last hour.  OK I could almost deal with that but every car ride since the Kiddo has been stuck on HELLISH.  He doesn't want to leave the hotel room which kind of defeats the point of getting away when you don't go further than a single room.  He's not eating very well if at all.  We had a really good period of introducing new foods and he was really getting better.  This has come to a screeching halt.  I just sit there thinking about all the time and money we've spent on feeding therapy.  Did this just send it down the drain?

He's scripting like crazy. Beyond the usual for him.  He's just not very present and it's like pulling teeth to get him to have any sort of functional language exchange.  I don't expect a spirited debate about the 2016 presidential election but hearing nothing but mixed up random bits and pieces of words strung together non stop is making my ears cramp.

I think the final straw for me was tonight in the hotel pool.  Trying to wind him down for the night and he's literally pacing in the water.  Pacing in general is his thing.  It's his way to cope with the world.  I don't usually care when he does it. He's regulating himself.  However seeing him need to do it in the pool, that sent me over the edge.  The pool is his happy place.  The fact that he can't even feel relaxed in it breaks me.  I am kicking myself that I have even taken him on this trip.

Now do I just hold on for the next few weeks?  Get him started with a full day of school in September where we have that beautiful long stretch of school till about early November without any breaks.  We make a lot of progress during that time.  We always have.  I have to hold onto that fault.  Of course the other half of me is thinking is some of the progress we will make just be getting him back to where he was before he slipped back.  I feel like I'm dancing back and forth with him all the time.  Do I call the doctor?  Do I call the caseworker?  Do I call my own doctor and get my own medication adjusted?

One more day here.  I suspect it will be loads of preparing him to leave the hotel.  Then we will run through a historical place at a breakneck speed.  We might get him to stop for five minutes and eat a cookie if we are lucky.  Then will start the daily meltdown/panic attack to return to the hotel ASAP.

This vacation stuff, who's it suppose to be relaxing to again?

Lucky

I will be the first to admit this is not the life I thought I would have. I mean, come on. Who signs up for it?  Even teachers, therapists and other professionals that work with our kids clock out at the end of a shift.  Hell, half the reason I left the field after the Kiddo was born because autism was burning me out. HA! Autism Mafia was like "Oh no Girl.  Just when you think you're done with us, we pull you back in."

So yeah, some days are less than ideal.  I might not always show it online but trust me I am far from an Autism Pollyanna.  However despite the sleep, food and behavioral issues, I'm pretty lucky.  No really.  Let me break this down for you.

I"m lucky it's 2014.  We know so much more now.  Way more than even a generation before us did.  My kiddo wouldn't even be in my town's school district had this been like it was when I was his age.  More likely I would of been encouraged/pushed into sending him away to some facility where visits would be rare if at all and the care?  Let's not even think about that.   As much as I joke from time to time that the Kiddo is available for rent (Two night minimum) or that a band of kidnappers would probably return him after having him for a day, I really can't even wrap my head around this idea of him not living here.

I'm lucky for the Internet.  Again, this goes with the 2014 thing but when it's 1 AM and I can't sleep because I am too busy having insomnia over my Kiddo or he has decided it's a sleep optional night, another autism parent is up somewhere in the world.   Or there are blogs to read.  Or good quality crap TV to watch online.  The computer can be my lifeline and my mindless entertainment.  I can just lurk or pour my heart out onto the page like I am now.  Thank god for blogging.  I think I'm slightly less annoying to my family because I have somewhere to get this all out.  Or at least they see other people say "ME TOO!" and realize I'm not just making this stuff up.  I have seen a difference in them.  Maybe they're just afraid I'll put them in the blog.  I wield that like a sword then.  I can make ya a hero or a villain folks! ;-)

I'm lucky I have a husband that stayed around.  So many do not.  So many bail.  Not him.  He gets tired. He is never sure what kind of scene he's going to walk in on when he comes home from work.  (I suspect he checks in on Facebook before he heads home for the night.  I would.) Even when he's off work, he's just on another shift at another job.  This boss is far more demanding, the hours suck and this Daddying job won't even match a 401K.  He's here doing it with me though.  At least I have a co worker I get along with and I can say "WTF?" too.  Plus, he's kind of cute and I'm allowed to sexually harass him.  In fact, he encourages that.

I'm lucky my son's school district does not suck. He's been going since he was three.  Off the top of my head I can think of maybe three or four problems that needed addressing.  He's ten now.  That's a pretty good record when I think about it.  Before you get yourself in a twist thinking "Oh her kiddo must be much more high functioning and needs less.", nope, you couldn't be more wrong actually.   I am very grateful we live where we live.  We go without quite a bit in areas because being in this district means that much to us.  Yes, we go into IEP meetings prepared but I've never left one enraged.  We get to "a place of Yes" I guess you could say, both sides.

I'm lucky because this could be more complicated.  He could have several other health issues to boot.  I know several families who are dealing with autism and "Fill in the blank" medical challenge.  (Seizures, heart problems, diabetes, vision and hearing loss)  Again, he's ten.  ONE, ER visit.  Just the one.  I know right?  How the heck am I managing that?  Knock wood, I haven't a clue.  I"m just lucky I guess.

I'm lucky because it has been worse and it got better.  I'm lucky because I have gotten used to the way we live.  I'm lucky because my pity parties for one don't last as long as they used to back at the start of all this.  I'm lucky because I can find the humor now and then in this.

I'm lucky because even when it's a really crappy day I can go to a drive through window and get an order of fries and make my kiddo happy.  Whoever said money doesn't buy happiness clearly never saw the look on my son's face when given a side of fries.  Thank goodness it's fries he loves.  Foie  gras would of been a much more expensive food to obsess on. Sure wouldn't of worked as a blog title either.  :-)