Wednesday, December 31, 2014

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.  ;-)

Tuesday, December 23, 2014

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. :-)

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.  :-)