Toast

I am toast.

I am burnt out.

I am done and yet I am not.  I simply don't have that option.  However, I can take my own advice and throw myself a pity party.  Won't you please come?  No gift required and the dress code is pajama casual.

This week has been a whirlwind of emotions for me.  Three rather big outlets all shared the same post of mine.  It's since been shared a crapload (yes, that is a standard unit of measurement) of times.  My email inbox filled.  A ton of new people liked my page.  A bunch of new folks started following me on Twitter including the OG (Orignal Gangsta) autism advocate Dr. Temple Grandin herself.  I still can't even wrap my head around it all.

Despite all this really cool stuff, I'm just sad.  The week my Kiddo has not been doing well at all.  He's fine at school but just falls apart once he is home. He is so full of rage.  There is no other way to describe it.  He's back to throwing things and going after our dogs.  Grabbing me by the wrist and just screaming like a banshee.  The usual things that have worked before for managing his behavior are now not working.  I will be making a phone call to his doctor on Monday and I guess it might be time for a medication change or dosage switch or exorcism.  I'm not really sure.  I'm really willing to try anything at this rate.

Yesterday afternoon I drove past a local school that was holding some sort of sports camp on it's field.  Typical scene of a bunch of mini vans and SUV moms dropping off their kids.  The kids running toward each other, laughing and screaming.  The moms all wearing sunglasses, chatting and clutching iced coffees.  There I was driving home with the kiddo from a therapy and it just really slapped me in the face how that is so not us.  How it has never been us and just when I think I don't care, I do.  I wish it was us  and it won't ever be. It made me cry. It made me cry just because I was crying.  So I cried harder and the snot was just blubbering down my face.  I looked like a nutter staring at these other families.

I can usually regroup from these moments but this week has nearly done me in.  It's hard to find the humor or the silver lining when the hits keep coming. Honest to God, the only thing that's been helping me stay afloat this week is the good that's been happening with my online stuff.  At the end of the day it doesn''t pay the bills but it's been one of the only thing keeping me from going off the rails completely, my little online family.  Tomorrow I was suppose to be taking my kid to a science museum and now I am not.  There is just no way I can chance it.  This behavior of his is unpredictable and he's getting too big to take out into public when an epic meltdown is just hovering.  Just like Kenny Rogers sings, "You got to know when to hold 'em and know when to fold 'em."  Dragging him through a museum I wasn't sure he would like in the first place, on a Sunday afternoon in the summer, and packed with people is not the jackpot I'm willing to gamble on. Nope. No way.  No how.

Tonight I lick the frosting off a cupcake and my wounds.  Tonight I indulge in some mindless TV on in the background and one of my dogs laying across my feet.  I'll go to bed after I post this.  I will take my own dose of melatonin and go to sleep.

Most importantly, I will try again tomorrow.

Autism Amnesia

Next weekend I will venture out with my husband and Kiddo to a science museum.  It will be something totally off our routine.  It will be a weekend so there's a good chance the place will be packed.  I'm hoping to meet up with some other mom bloggers so lots of people we don't know.  It is on paper all the ingredients for an epic meltdown waiting to happen.  Why am I doing this? Simple, autism amnesia.

Why yes, I do often forget the limits of what my kiddo can and cannot do.  He's ten. I really ought to know better by now. I don't always push the boundaries like this. Sometimes I like to do the stuff I always thought we would do once my kiddo was old enough to do it.  I adapt to him all the time.  I'd like him to extend me the same kindness now and then.  Plus, it's not like I'm taking him to a portal of Hell.  The stuff I plan to get him outside his box of interest is kid friendly stuff.  A kid science museum that encourages kids to touch all the things plus an active ten year who would of touched all the stuff anyway, that should be a slam dunk.

I've done these little tests with him enough times to get Autism Amnesia.  I get it in my head that everything is going to be just fine.  That there's no need to prep and we can just wing things.  So I have to keep reminding me to remind him that this thing is coming.  I just spent twenty minutes writing a social story for him, complete with pictures.  Thanks random folks who post pictures online of their kids doing things.  You're all in my social story now.  Don't worry. I only used the ones where your hair looked really good in the shot.

It's also possible that with enough prep he could totally surprise me.  That this big outing will be a mutha loving delight to him.  He could make a great game of looking all over the science museum for the exact folks that are pictured in his social story.  He has before.  Heck, if that alone keeps him busy so Mama can get some of her blog research done, I consider that a win.  (Tune in for that post later next week!) This too will contribute to my Autism Amnesia in the future.  I'll think to myself back to this event in the future.  "Oh he was so awesome that day at the museum.  Maybe he'll like going to the MoMA for the Andy Warhol retrospective."  (Note to self, unless that retrospective includes a performance art piece of eating french fries around the globe, the answer is will be "What the hell were you drinking when you decided to do this lady?")

So wish us luck.  The Kiddo will either have a heck of a time or give us a heck of a cardio workout as we run through the entire joint.  I suspect I might get a rest if I promise a stop off in the overpriced cafeteria for fries.  I"m either really brave or really forgetful.  :-)

"All kids do that."

It's said so quickly to me.  It's meant to calm my nerves but it just manages to do the opposite. I know the person saying it means well but to me it's a dismissive sentence. It makes me question my own thoughts and invalidates my feelings and experiences.

Here's the thing.  It doesn't makes the autism go away.  It does not give a solution to what a parent clearly sees as a problem. My child is struggling.  I want to help him.  Please don't tell me not to worry about it.  That I should just shake it off or be glad it seems that my kid is doing something "normal".  As if I should be congratulated that he is doing something typical.

Yes, he does do a lot of typical things that most ten year old boys enjoy doing.  Riding his bike all over. Belly flopping into our pool daily and swimming so long each day I'm convinced he's grown gills. Eating his body weight in french fries and hot dogs.  Singing along to songs his likes on the radio.  All activities that for a few moments I can sigh and relax a bit. Happy he is happy.

But that above mentioned love of hot dogs only came after hours and hours of feeding therapy.  No, he's not just a "picky eater".  He would have, in fact, chosen not to eat at all.  He wouldn't of just broken down and finally eaten when he was hungry.

That bike riding came after a consult with an OT and PT.  The singing?  So many sessions with a music therapist that insurance will not cover because they do not recognize it as necessary.  Even swimming only came after calling around to several different places to track down the one swim instructor that actually had experience with special needs kids.  Even then that was dicey as she didn't realize the havoc she caused when she suddenly canceled sessions twice with little warning.

Do you have to sedate your child just to get his teeth cleaned by a dentist because he's now too big to be held down by three adults to get an exam? Are you in an absolute panic every morning as you put your kid on the bus because you just don't know how the day will go and when the next phone call from the school will come? Do you have no play dates for your kid because although his typical classmates are kind to him, they do not call looking for him?

Do you sometimes post their milestones on social media and wonder "Will the folks I'm friends with even get why this is a big deal?"  Then you cry when you see that they do.

I know you want me not to worry.  I know you want me to realize that he isn't as different as any other kid his age.  I know he is "Different, no less".  Here's the thing.  I've said the exact say sentence to other moms about their neurotypical kids.  Joyfully chiming in that "Hey, my kid does that too!".  I've seen a few of them do double takes when I have said it.  I've seen a few sudden flashes of panic across their faces that I just said a behavior is very much like something my autistic kiddo has done.

So if the phrase doesn't always sit well with them, why should it sit well with me?  If you want me to relax about it, then they have to take a chill pill about it too. Unless this is about your kid keeping all the potato farmers in Idaho financially sound, because my kiddo does that too.  :-)

Take that to the bank.

You ever sit back when you get a free moment and just think how surreal all this autism parenting stuff is?  Like when you're on the floor of your kid's room in the dark waiting for the melatonin to kick in.  Or you're prompting your ten year old to stop repeating the verbal stim "No repeating!".  It's moments like that where I have to take a deep breath and go into my mental vault of good bankable moments with my kiddo to get me through it.

We're back from vacation and it was kind of good.  Well, the destinations were good, the travel, Oy Vey.  My husband's car air conditioner decided to stop working and did I mention we were traveling during 90 degree heat? As we love to road trip, a large portion of this vacation was the journey and that journey felt like riding in a sweaty sauna with a crying child.  One who decided that every exit on the highway must be THE exit because he just wanted this road trip to be OVER.  I seriously thought at one point he would of considered going to the mall as the vacation destination because at least it would be climate controlled there.

I can't really get mad at the kid for being miserable.  We were too but I'm not going to lie.  Being that hot and uncomfortable PLUS listening to him build his meltdown up was my mental undoing this week.  Does your kid do that?  Like you can just see the meltdown building and building till it just reaches it's peek?  And I'm there desperately trying to keep him calm and talk him down from it.  It gets to a point of no return and I just think "Oh fuck it.  We're in it now.  Just scream." because I'm out of ideas and there are no solutions to be had.  Sometimes my kiddo just needs to wail and get it out of his system.  As much as my mom gut tells me to try to defuse the situation before it gets ugly, it also tells me when there's really no saving it.

So there we were for many days of driving, sweating and screaming.  I'm worried about the kiddo.  I'm worried about my husband who has to try to concentrate on driving.  I feel like I failed my kiddo because I can't calm him down and I have failed my husband because I can't be a good co pilot and keep the situation to a dull roar in the car.

 I was feeling pretty wiped out by the end of it.  The hubby and I made a point of tagging each other out a few times while at the resort to get some mental recharge breaks.  He went off to mountain bike.  I took the kiddo to a movie in the basement of the hotel which we had to ourselves so it was like an awesome private screening.  The boy and I scripted the whole movie back and forth to each other and laughed a lot.  Kind of helped erase the journey from my mind.  Later that night, I left my tired husband on the patio with a cocktail and took the kiddo to the pool.  Again, we had it to ourselves.  We goofed.  We splashed.  We laughed.  Couldn't help but think to myself how I better remember this.  I needed to put this in my memory bank.  I would need it and I did.  I needed to call it up not a day later when I twisted my ankle and fell flat on my face at the hotel dining room.  I needed to remember there was good in this trip.

I need to remember there is good in this life.  As freaking hard as it is, it's not non stop misery.  It's hard.  It can suck but there is good in it.  Everyday.

Husband wants to road trip again in August.  Here's hoping the AC will be fixed and I'll get a lot more bankable moments for rough times ahead.

Sprinkles or Jimmys?

"And I sprinkled some white chocolate jimmys on top.  It's wicked awesome." 

I heard this phrase while I was on vacation in New England with my family.  Now I'm guessing that most of your reading this are completely confused what the heck a Jimmy might be.  However, my sister in law in is from Pennsylvania, so I've heard this phrase before and new it meant sprinkles.  I was kind of amused to hear it was an expression in this area too.  I texted "Auntie Fry" and she was happy to see those folks knew that it's jimmys and not sprinkles that go on top of ice cream.  

So since I was feeling punchy and I had all of your Facebook followers in front of me I threw the question out to you all.  What do you call it?  Now overwhelmingly  most said sprinkles but there were a lot of folks who knew what I meant by calling them Jimmys.  Then my fries from Down Under were quick to tell me "Oh no.  Those are called hundreds and thousands." and another phrase was added to the mix.  Auntie Fry and I texted back and forth in awe at the regional differences.  It really got me thinking how confusing that all was for one silly dessert topping.  This isn't the only word in the English language like this one.  It once again reminded me just how complicated it can be for someone with autism.  

My kiddo has been in speech therapy since he was roughly two years old.  I'm pretty sure we always will be.  There's just so much more he has to work on plus now that he is so open to trying new foods with said magic speech therapist, we'll be going till they kick us out.  I suspect by the time he's done there, we'll have a room named after us at least.  Or so I would like to think.  Everybody loves him there! My point is, it's not just getting him to be able to say these words clearly but he's still learning what they all mean.  Think of how confusing it is for you to hear "Put some jimmys on that ice cream cone."  Now you might not be familiar with the slang of a dessert topping but based on the rest of the sentence you could probably figure it out.  Or at least question what that means.  I think a lot of sentences to the Kiddo are like that.  So many words have more than one meaning and he's constantly trying to figure them all out.  Plus add tone of voice, well now it's getting really complicated.   He's also trying to figure out social cues and facial expressions to boot.  He's got a set of parents who communicate pretty exclusively in sarcasm to each other.  It's no wonder why some days he just sticks to his verbal scripts from various Pixar movies.  Those lines, those words never change.

Just another reminder of how many little stressors there are in a day for him and for us.  Now I'm off to write a social story for him about how some folks call fries "chips" before there is an international incident.