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.

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.  ;-)