Saturday, February 28, 2015

Autism Rerun

We just wrapped up the Kiddo's IEP and the OT couldn't make the meeting.  I asked for her to call and she did the very next day.  I'm pretty sure by the end of the conversation she had wished she wasn't so prompt with getting back to me.

The Kiddo's constant need to be in motion and scripting has leveled up.  Big time.  I needed some ideas.  Ones I haven't tried before that might help with his sensory needs.  My bag of tricks was turned inside out.  I needed to bring in the big guns with her all her fancy learning and degrees. I sat back and waited to be startled by her insight and suggestions.

Except I wasn't.

She started to rattle off her brand spanking new ideas and I had autism deja vu.  It was pretty much like listening to Don Pardo announce "The following is an encore presentation of your ASD child's therapy treatment plan."  The greatest hits of what we have done already with him and I just sighed.  Loudly.  (I"m Irish.  We could medal in that category.)

I can tell she's getting flustered that I am not responding with more enthusiasm.  It's hard though to be enthusiastic when you have been there.  Done that.  Sent the freaking postcard and bought the sensory friendly no seams t-shirt.

I'm not a know it all.  Far from it.  That's why I'm asking for help.  I'm also not going to lie and pretend we haven't done something and the results were basically "Pfffffft!' I was kind of hoping her bag of tricks would be a bit deeper. Maybe have some secret compartments that mine did not.

I'm not saying that I wouldn't be willing to try some of these again.  Heck, the first time we did feeding therapy the results fell flat.  Now the Kiddo is really rocking it.  It's entirely possible that with some maturity and time, one of these might be awesome.

I just wish she would of been honest and be like "Dude, I got nothing else."  I could respect that.  I also respect that she's trying to come across as together and hopeful.   But I almost want her to be like "Damn girl. This is it."  Just acknowledge that this is where we are stuck.

I'm just starting to feel like my life with this autism stuff is one giant rerun and I'd really like some new episodes.  I can't change the channel.  I can't find the remote. I want to hit "next episode" but autism isn't Netflix.

So now we get to pick one that we want to try again.  Here goes nothing.  Stay tuned for director's commentary.  I'm going to have loads to share.

Wednesday, February 18, 2015

Ten tips for taking them out to eat.

Yes, you can take them out.  No, stop right there with your thinking, "Oh, her kiddo is probably higher functioning than mine.".  It is completely possible. Let's face it.  Babysitters are mythical creatures for autism parents.  Not a lot of us have them and even if you do, they are HELLA expensive Yo!  It just takes a tad bit of planning.  (Doesn't it always?)

1) Know your audience.  This is not when you get to try the new fancy fusion foodie place.  I don't call this blog Autism with a side of fries for nothing!  Many a meal getting outing has been at eateries with a drive through window.   I would ask for my food to go and then try to eat it there.  If the crap hit the fan, I could pack up and jet fast.   Eventually you might be able to swing going to a deli, pizza place, diner or a bar and grille family type place.  Fast food though is the best and safest start.

2) Feed them first. Have you seen them hungry?  It's not pretty is it? This isn't about getting your money's worth on the dining experience.  This is about teaching them how to wait.  Let's not add hungry to that mix.

3) Bring more food with you. Chances are you will order them something you THINK they might eat and then when it comes, THEY WON'T!  Autism is fun like that.

4) Prep them.  This is a job for a social story! Keep it simple.  Tell them what to except.

5) Bring your electronics and screw anyone that rolls their eyes at you for having an iPad or whatnot out.  The ones that claim when they were young they didn't have such things.  Yeah, I call bullshite on that.  If your parents could have figured out a way to drag the Artari 2600 with them to keep you quiet for 20 minutes so they could sort of feel like couple on a date, THEY WOULD HAVE!  Remember, we are the generation who's moms dropped you off at the video arcade at the mall for the free babysitting while they went to Macy's for new sheets. Times have changed. You work with what you got.  Charge them up!

6) Become a regular.  Chances are, your kiddo loves a routine just as much as mine.  Use it to your advantage and become a beloved loyal customer. Kiddo is especially good at charming wait staff by being adorable.  Last week at the diner, the waitress brought a large chocolate milk to him as soon as she saw us come in.  She knows his "usual."  She knows to put in his hot dog and fries order right away and bring it out ASAP while Mom and Dad are having their cup of soup.

7) Tip well.  If you can afford to do so.  I don't know about you, but you can always tell where my kiddo sat at the table by the amount of food under it.  I call it the "Gee, we really made your shift interesting didn't we?" fee.

8) Timing.  Early bird dinners.  Late lunches.  Odd hours are your friend.  Not as crowded.  Not at noisy.  Not as busy.  Often, food specials so you can save a buck or two and put it towards the tip.

9) Go to the bathroom before you leave the house because even though all restaurants have bathrooms, they also have THE ELECTRIC HAND BLOW DRYERS OF DOOM!!!

10) Accept your fate but don't let it defeat your spirit. Some outings will be awesome.  Others, not so much so.  Retreat, lick your wounds, try again. You can do this.  So can they!!!

When all else fails, just order another side of fries. Either for there or to go. ;-)

Tuesday, February 10, 2015

My boy and his uterus

There isn't a parent out there that has not gotten that phone call of shame from the school nurse.  The one where they call you mid day and tell you your kid is sick and you need to come pick them up.  As you drive over there you feel like the world's worst parent because you sent them in sick.  How could you not notice they weren't well?

Pretty much any time my kiddo has been sick, this has been how it started.  It's rare I notice at home that he's unwell. He's so stuck in his routine of going to school that he could be barfing and he would still want to go.  In fact, I really wish he would barf more to indicate he's sick.  It would be a clearer sign to me.  As he does not have the communication skills to tell me "Hey Mom, I don't feel good.  I need to stay home and watch The Price is Right and sip ginger ale all day."

I got a phone call from the nurse.  He didn't have a fever.  He hadn't barfed but he wasn't "himself."  OK, I can get that.  As he is always going at hundred miles an hour, if he's kind of lazy/lethargic, that's not him.  Except he skipped to the bus singing "Feliz Navidad" at the top of his lungs not to two hours earlier.  But these things can come down quick so I ask her what other type of symptoms he's showing to buy a little more time as I have to put on real pants and a bra.

"We asked him if his throat hurt and he said yes."  Rookie mistake nurse.  Are you new here?

My Kiddo is such a people pleaser.  Asking a question in that matter will only get him to answer "yes". They are presenting it in such a way that he's going to say yes because he thinks that's what he should say.  Asking exactly what hurts is better.  Still, I go and get him because I know that's why they are calling me.  Plus, I don't want him sick in school.  I want my baby in pajamas all cuddled on the couch why I try to figure out what's wrong.

Sure enough when I asked him if his throat hurt, he smiled and said "YES!" proudly like he got an answer right on a test. However, this ain't my first rodeo and I need to see if his throat actually hurts or this was accidentally planted into his mind.   So I asked him, "Does you uterus hurt?"  He looked at me and said without hesitation, "YES!"  He then wiped his nose with the back of his hand and I see a trail of snot.  Methinks it's more like a case of the sniffles than he has his period.

Me: "What's bugging you kiddo?"

Him: "Want to lay down with Logan and Maya." (Our two dogs)

So he came home and did just that.  Put on PJ's.  Chilled out in front of the iPad and smeared boogers all over it.

If by any chance you are someone who works with autistic folks and you are reading this right now, do me a solid. How you choose your words is so important.  Please put some thought into them. Yeah, this is just a simple little misunderstanding of what cold symptoms my kiddo is showing.  There's a part of me that looks at this as just another reminder of how flipping vulnerable he is to the power of suggestion.  He's so eager to fit in and get it right.  He'll agree to anything.  That frightens me. It makes me wonder what am I missing because I'm not asking the right questions. Help a sister out here.  Make sure you aren't leading a conversation.  Give them extra time to respond and use some simple speech.

Now pardon me as I go adjust my shopping list.  It seems my son doesn't need tampons and Midol this month after all.

Tuesday, February 3, 2015

Tri Annual Terror

Me: "I have the Kiddo's Tri Annual coming up next month."

"K": "Oh my god! He's in the Tri Wizard Tournament?!?!?"

Me: "Of course. He's no Muggle! They start it by telling me what an adorable, sweet and handsome boy he is and then it goes downhill from there where they tell us just how far behind he is in everything."

"K": "Well that's got to suck."

This is why I love my friend "K".  She gets my need to crack a joke to help cushion the blow on most things autism related.  She also doesn't go all Willy Wonka by candy coating it.  The Tri Annual testing blows!

 We finally got to go over the behavior assessment last week.  This process started in early November.  It took till Jan. 30th to actually review it. Yes, it takes that flipping long. Frankly, the behaviors that I was first concerned about have changed vastly since the start of all of this but they didn't technically observe him for these new ones cropping up.  

I turn to the lovely young lady behavior therapist who I am pretty convinced is still in high school and ask "What now?  What about this cursing issue?  It's really getting bad. Mother of God don't you dare say token reward system. I will cut you if you so much as utter the words "sticker chart"." (OK, maybe I didn't say all of that but in my head I was screaming it.)

She seemed a little alarmed that I wasn't sold on the token nonsense.  In fact I'm pretty sure she was thinking "Wtf?? The professors in school all said this is what to do. Nothing makes any sense anymore!!!"  To her credit she did have some other ideas we are going to try.  Not going to lie, all of this just exhaust me.  This behavior plan won't start till mid February.  So more time walks on by.

Plus, this is a tri annual assessment year for our boy next month. If you are unfamiliar with the term, it's pretty much this.  Every three years, your special needs kiddo will undergo a smattering of testing by the school to see where they are at essentially.  Translation: Just how freaking developmentally delayed my kiddo is with little to no hope of ever catching up to his typical aged peers.  Oh and also help write new IEP goals but mostly it's just the soul crushing realness of our situation.  Good times.

Yeah, they'll point out improvements but by and large it just is a reminder of what we don't have here and where we might never get to be.  It's hard.  So freaking hard to hear.  Thank god these things are only every three years.  I need that time to recover between them.  I hear all these typical parents bitching about Common Core and standardize testing and I think "You don't know the circle of Hell we're stuck in over here."  Typical teaching doesn't reach my kiddo but a all these behavior and academic testing are suppose to give a clear idea where he is at? Huh??

It was also at this meeting when I looked at my son's teacher and realized I see the start of a pregnancy belly.  She's due in May.  Another new teacher to prep and transition. Happy for her, tired for me.

If I start a, will you be willing to donate to my spa getaway forget it all weekend?  Don't be cheap. Mama is gonna have a large bar tab.

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!