Wednesday, January 28, 2015

Why does it have to be so hard?

"You got to take it as it comes.  Sometimes it don't come easy"

Stevie Nicks Sometimes It's a Bitch 

If my life as an autism mom had a theme song, the above would be it.  Because I have yet to meet a thing on this earth that is more complex, complicated and down right exhausting like autism is to me. Autism isn't just a bitch.  Sometimes autism makes me its bitch. Not gonna lie. Getting really tired of it.

This week Mother Nature decided life at French Fry Inc was too boring.  Too routine.  So she decided that all the snow on the planet needed to fall directly on my house.  Okay maybe it didn't but a lot fell.  Enough to warrant an early dismissal on Monday and no school Tuesday.  Wednesday is till up in the air and I wouldn't be at all surprised if we wound up with a delayed opening. (Update: we do!)

The kiddo, for the most part, has been kind of, sort of, how to put it... a giant screeching banshee howler monkey possessed by Satan.  Or rambunctious.  One or the other.  From the moment he woke up.  This is not a "Go out and play" kid.  This is a "Watch every damn minute" kid.  All over the damn place.  Tons of sensory and attention seeking. Redirecting every ten seconds. Gobs of fun. NOT!

Husband is home trying to "work', which is delightful at this point in our autism game that he thinks he will ever have the quiet to do so.  Babe, I love you but it will never happen. I'm sure your secretary finds listening to your dictations later with the kiddo and the dogs in the background acting like a three ring circus rather amusing though. I feel guilty that I cannot keep the kiddo busy enough for you to get some serious work done.

And this being the cruise director for activities?  I am so flipping done with it.  It's constant.  I'm effing tired.  I don't want to watch the same YouTube clips of bus safety inspections anymore.  I am can't stand being engaged only to find out he wants me to play my part in some script from a conversation he heard three years ago.  I know he finds enjoyment out of it but it bores the living piss out of me.

I try to dance with what life has to hand me. 

I really do but I have hit my autism quota this week and it's only Wednesday. The two hundred and fifty two steps of the bedtime routine.  The item of food he cannot get enough on a Monday but then decide on Tuesday he will never touch again.  The constant scripting of "Gentle with the dogs" rule only to be rough with them five seconds later.  The extra fun bad habit of cursing he picked up from me.  A constant reminder of yet another failure I have achieved as a parent. Oh and my son deciding that his sensory pressure needs can only be fulfilled by being physically aggressive towards me.  That's a peach.

Basically, autism you are kicking my ass this week.  Ease the eff up!!

Pardon me while I hide under a blanket today with the remote until the boy comes how and I get to do this all over AGAIN.

And pardon me if I don't see autism as some sort of wonderful gift because it's not.  Right now, autism can go suck it.

Wednesday, January 21, 2015

"I don't want them labeled."

If I had a dollar for every time I heard this I could pay off my house, your house and probably have enough left over for a nice new car.  Honey, it's time we had some real talk.

I keep hearing this.  Hell, I've even said it myself.  The fact is, this isn't about YOU. It never was.  It hasn't been about you since the moment the doctor said "It's a boy! Or girl!". Sorry sunshine, I am all for a pity party for one from time to time.  This resisting a label thing, you're just keeping your head in the sand.  That's not helping your kid at all.  You think that label is going to hurt them? What do you think ignoring what is there is going to do? 

I'm not going to beat around the bush with this.  Your kid already HAS a label.  The weird one.  The troublemaker.  The quirky one.  The "What's with that kid?" one. Why not get them the correct one?  More importantly, get them the correct supports in place for success.

The label is a necessary evil.  I know being practical is about as much fun as watching paint dry but it is what it is.  You think you will get an insurance company to pay up for some sort of nondescript help?  I can't even get them to pay past thirty for speech therapy and my kid has the label of autism! Plus, I get the added fun bonus of having my yearly conversation with them of "Why yes, I will still be taking him to speech therapy and paying out of pocket.  He's still very much autistic!  He didn't magically recover from his severe expressive and receptive communication troubles just because we hit the limit. Go figure!"

And school Fries, sorry, you are definitely going to need them there. No one is handing out IEP's all willy nilly for kicks.  You want that free and appropriate education that the law entitles your child to receiving, you have to get the label.  You just do.  You want to get the best possible tailor made education for your kid, you best accept that label you are so afraid of calling them.

I get it. I really do. I was in denial for years.  I didn't want to see what was right in front of my face.  Once I started accepting it, well, I got used to it.  It's not a case of getting better.  You just start finding your kid's own groove.  I started following the tour guide that autism sent to me.  Yes, there are frequent stops for "window fries" and I know more about trains than I ever thought possible. I started to get a bit more fluent in his own language while teaching him my own. I saw past the label.

In other words, I got the eff over myself.

Everyone wants what's best for their kid.  Maybe it's autism. Maybe it's something else.  Whatever it is, let's not add resenting you as a parent to the mix.

Wednesday, January 14, 2015

The Autism Registry

Every life-changing event seems to be a good reason to throw a party and register for gifts. Engagement parties. Bridal showers. Baby showers. But do you know what's missing? The autism shower. 

 There is so much you need with autism when it comes to live with you at your house. It changes your life forever and like any major lifestyle change your going to need some stuff. Lots of stuff. Let's face it you didn't sign up for this but you might as well get some things you can use.

1)A crockpot slow cooker. Personally I think every new mom to be should be given one of these once they have a baby. If by some chance you don't have one, go get one or give it to a new autism mom as a gift. There will be lots of times you will be in waiting rooms for therapy and doctors appointments. Might as well have dinner going while you're busy trying to keep your kid entertained with a three-year-old magazine and a  half dried up pen from your purse.

2) A tablet. Be at an iPad or any other brand trust me it is the best sanity saver your money can buy. Likewise have someone else get you a couple of different cases to keep it safe. Because with autism there is no perfect case that will keep the iPad safe. I think I'm on case number six at this point with my kiddo. Don't bother leaving in the comments which case I should try next. I have literally tried them all. Military grade does not equal autism grade. 

3) Melatonin.  Do you like sleep? Would you ever like to do it again? Be a pal and get some for these parents. 

4) A really good coffee maker and a back up coffee maker and coffee and did I mention the coffee? A case of Red Bull or Diet Coke also work. 

5) Batteries of various size. Because you never ever  want to be without working batteries for the toy that your child suddenly takes an interest in. Likewise, extra tablet or phone chargers. I swear those things grow feet and walk around my house. 

6) Portable charging ports. Or you'll be like me during hurricane Sandy charging my portable DVD out my car in the middle of 75 mph wind. 

7) Oh you want to give them a copy of your kids favorite movie? Yeah, just give them five copies of your kids favorite movie because they're going to destroy all those copies. Save them the fun of driving like a maniac to five different stores in order to replace it. 

8) Noise canceling headphones. Autism is loud and it comes in surround sound. Believe!  

9) Gift certificates for babysitting. Everyone wants to watch the baby when all you do is hold the baby and watch it sleep.  Do you notice those offers a babysitting seem to disappear when your kid becomes mobile?

10) Wine and or beer with Netflix and a DVR. Trust me. Mental vacations on the couch are key. 

So where's my party friends of mine?  Get to it. Put out a nice spread. Don't forget the fries!

Wednesday, January 7, 2015

"At least your kid talks."

I hear this a lot.  It's meant to check me into reality that the autism I am familiar with isn't every one's.  I get it but here's the thing.  (Hey, it's a blog. You knew the "but" was coming.)

There's a difference between talking and successfully communicating.  Yeah, my kiddo can now say lots of words.  Some are even the four letter variety that he learned from his dear old mom.  I kind of wish he didn't pick those ones up and that's my own fault for saying them around him.  I kind of also wish that he wouldn't just decide "Oh I'm just going to say this certain set of words all day. For everything."  It's like he has thousands of words in his head and only about twenty or so of them actually come out of his mouth on any given day.

Which makes trying to have a conversation with him really freaking hard! Sometimes I ache just to be able to have a conversation with my Kiddo that's not like pulling teeth.  The constant redirection.  The fishing for answers to the simplest of questions.  All the prompting.  It grinds a gal down.  I'm not asking for a two hour talk about the finer points of his day but to hear  "It was okay." about how school went would be nice.  Or even if it sucked. I would love to know that he was really pissed off that day.  "Like they served hot dogs when the lunch menu clearly stated it was pizza day."  A legit reason to rant and rave.  He can't do that.  He won't do that.  Sometimes I can only just sense he is mad and it's a great big old guessing game of what's wrong. When your kiddo screams "TATER TOTS!" again and again for an hour, you start to question why you are sending him to speech therapy to get him to talk in the first place.

There is the constant need for me to be his translator to every one we meet when we are out and about.  People will ask him a question like his age or where does he go to school and I can just hear his force field shields going up.  He's just staring at them in stunned silence or even better, totally not looking at them at all and suddenly singing "Feliz Navidad".  Then I get the look of either "What's up with this kid?" or "Oh my god! Your kid is so rude."   Nope, there's nothing wrong with him. He's just autistic, blah, blah, blah. and I have to prompt the kiddo to respond.  I'll admit it. I'm so tired of having to do this.  All the freaking time. Sometimes though, we get lucky and he'll quote some Pixar movie.  If we're hanging with another family from the autism tribe, they usually can quote right back.  That's always cool when it happens but those moments are usually few and far between.

I wish your kiddo could talk too. I really do.  I don't wish for anyone to have a non verbal child.  It's even harder than what I have on my plate.  I know you are thinking "What I wouldn't give for my kid to drop an "f"  bomb?".  I would love for that to happen too!  We could sit together and laugh and bitch and moan and be all "OH MY GOD!! Why did he have to say that in Target????".  I want you to have that problem too.  Just realize it's not the perfect problem.  It's just a different one.

I have to wonder how a kiddo can perfectly mimic the voices from a YouTube clip but can't order a side of fries for himself at the diner.  Or when he can say it, it's done at such a whisper that no one can hear it and they ask again what he wants.  He then gets so upset that they didn't hear him and he got it wrong that he doesn't say anything at all.  I have to wonder how in the world he will manage at all when I am not there to help.

Then there is the fun of telling him "No" to when he does make his needs known.  We badger the living daylights out of him to "use his words" and when he finally does, he doesn't get what he asked for.  This has confused him to no end.  I feel terrible when this happens because I know it was a struggle for him to get those words out.  There I go, telling him "NOPE".  I know this has to do a number on his head.

None of this is easy and no one has it better than you. That's what I have to try to remember.  Everyone has plenty on their plate and it's not always what they ordered.