Autism, you're doing it wrong!

Or so I've been told.  A lot.  Lately.  Almost daily.  Can you tell I have some stuff to get off my chest?  Bear with me folks. This one is a rambling mess.

Since dipping my toe into the autism blogging waters boy can I just tell you how much my views on autism have changed?  Well not really.  More like my views on how folks view autism now range from "Wow that's a really interesting perspective." To the more extreme "WTF!?!?" On many occasion.

I knew opening up a door to my life to the World Wide Web that I was bound to hear some criticism. I get at.  Here's the thing.   I'm not an expert.  I'm just a mom with wifi and a smartphone.  Up till this, I kept my arse out of the autism warrior mom wars for completely selfish reasons.  I value what little sanity I have left.  I'm only trying to help one kid and one kid only.   MINE!

I get that some folks although well meaning just cannot stop themselves from telling me or another one of my fellow in the trenches with me parents how we are screwing up our kids.  I suspect if we were all just parents of neurotypical kids only, these folks would still be telling me how much therapy my kid is going to need because of me as an adult.  I know these people just exist.

Some are nothing but clueless shit stirrers.  You know it.  I know it.  They can paint that perfect picture of what they CLAIM to be doing.  Doesn't mean they are actually doing it.  Or if it is really working as well as they say.  It's really easy to put on the mask of the perfect parent hiding behind a computer screen.  I do find myself  rolling my eyes and trying like Hell to let it roll off my back.  To not take it personal.  It's really hard sometimes to not engage.  To not explain more than once why we do what we do.  I've ignored it as much as I could but yeah there are days I've had to break out the delete and block buttons.  (Not gonna lie.  Trying to figure out a way to build a real life "Ban" button.  Hurry up science!)

The Facebook page that is connected to this blog has exploded in a way I could of never of fathomed.
Even though I really didn't think it could ever grow like it has, I am so grateful it did! It's been so supportive to me to say in a quick status "Oh my god I want to slap Steve from Blues Clues!" and immediately I'll get a ton of comments from folks plotting the deaths of SpongeBob or Elmo.  Folks who get that their kid's quirks aren't so bad because they will be the first to admit they have their own. (I am so jealous of my son's weighted blanket).  People who know that when one of their kids has autism, the whole family has autism.  It's just a completely different way to live.

If I have learned anything from this experience, I'm living autism the way it's right for this family.   Just like everyone else is doing what works for them.   Even if I think it's nuts.  You can save yourself a lot of heartache if you stop panicking you're doing it wrong.  You probably are, in someone else's eyes. But who cares?  Is it working for you?  Then game on dude and order another side of fries.

There's sick and then there's autism sick.

Like most things with the kiddo, even the simple yet miserable event of a cold is extra complicated/annoying/frustrating due autism.  Don't get me wrong.  I know any kid when they are sick are not fun to be around.  But allow me to explain/whine.

There is no "Mommy I don't feel good" coming from this kid.  Ever.  This is a kid who dropped a 12 pound bowling ball on his toe, breaking it, and kept on playing.  Is he gonna be able to stop and tell me he feels hot or his stomach hurts?  No, he's more of a visual kind of guy.  He'll tip me off by throwing up all over himself and then falling back asleep in it. (True story from the rota virus incident of '09).

There will be no taking of his temperature other than feeling the back of his neck and maybe if I'm lucky the ear thermometer. (Which I know is not accurate but you know how long it took him to tolerate that?!?!?  Yeah I'll use what I got).

I always knew I was really sick when my mom rolled the old 13 inch black and white TV into my room.  Mom's orders, stay in bed.  She used to really get serious taking my temp and my pulse.  That's when I knew I better stay still, sip my flat ginger ale and watch cartoons.  I have a son who will be running a 102 fever (I think) and will be running all over my house!  I will have to hide foods that I know are much to harsh for his sick tummy because he won't listen to reason that the B.R.A.T. Diet is his friend.   He has been known to barf while running.  Barfing freaks him out completely and only seems to rev him up even more.

Then let's add the fun of medication.  He won't take meds straight at all ever. I've resolved myself to that.  He knows I put his daily supplements and such in milk.  We've made that compromise.  But when he's sick, milk is the last thing he should be having.  So while feeling miserable I get to wrestle with him, trying to get some Tylenol in.   Of course wrestling/fighting/fussing usually leads to more running around up chucking.   I find my washing machine just sighs a lot when it seems me coming with another load of puke clothes.  I give that old girl a lot of work.

But this is the worst part of autism sick vs just sick.  He's gonna regress.  Something or things are going to get lost in the shuffle.  A typical kid will probably have a quiet day or two before they are fully back in the swing. My kid?  It could be a week.  Maybe more.  We'll see some skill lost.  It might take complete retraining to get it back.  If at all. Yes, he'll be happy to see that order routine back but he won't be fully on board with us again.   If anything, he's probably going to remember how when he was sick, I wouldn't let him go swimming while he was barfing and therefor I am the meanest mom ever.

This is one of those times I really lose my mind.  I'm his mom.  I'm suppose to make it better and I don't even fully know what's wrong to make better. Last night it was clear to us when he willingly skipped his whole nighttime routine to go to bed by 7 something was up.  I will now obsess on every sigh, sniffle and behavior for the next few days.

 After he was out like a light, the husband poured me a glass of wine.  Aka, "Mommy's meds". No, he did not have to fight me to drink it. :-)

All I want for Christmas is gift ideas.

The holidays are approaching.  People are gonna ask what does he want.  I haven't a clue.  Well I do but sometimes making up a list for things a kid on the spectrum would want might look a little um odd to the average Joe.

In a perfect world that would hold "quirky" in high regard my son's ideal list would be the following.

1) DVDs of DVDs he already has.  Completely not age appropriate. Yeah he's 8 and people guess he's all in SpongeBob.  I would welcome that goofy little character with open arms if he would only watch him. Nope you can get him copies of Blues Clues.  Hell he rediscovered Baby Einstein on YouTube.  Shoot me.  He also loves these DVDs to death. Scratches them up and of course freaks the hell out when they skip or god forbid don't work.

2) French Fries.  Seriously.  Mommy and Daddy, in his eyes, don't buy them enough.  Forget visions of sugar plums dancing in his head.  Sacks of these in his stocking would make his day.

3) 217 brand spanking new small spiral notebooks.  To continue the age inappropriate theme.  He can pretend to be Steve from Blues Clues.  You don't even need to wrap them.  Just scatter them all over my house.  That's where they are going to wind up anyway. Don't forget a few in the bathroom or in my bed.  I love rolling over onto spiral.

4) Random flash cards. He's not going to care what the subject is.  He's just gonna want to scatter them all over the floor and then leave.  So go with what's on sale.

5) A 36 pack of YooHoo with the the straws punched them in already. Time saver!

6) Clothing with a nice texture he can chew.

7) A school bus.  Not a toy one.  A real one.  Yes you can never have to many rides on a bus.

8) A dog that would actually enjoy being rough housed.  One that begs "please poke me in the eyes!"

9) Various dog chew toys.  Not for the dog.  The ones with the squeakers are the best!

10) Wine for Mommy.

But I can't really give out that list can I?  I try to find something. Because how many times have we all heard "He has to have something to open!' when you ask for a gift card or to pay for some therapy.

Seriously side of fries people! It  would make him happy!

Today was a good day.

Dammit we earned it.  We earned a day off of school/work/therapies.  We earned a day off of autism.  Still I feel slightly guilty about it.  And kind of confused.  I kept waiting for the other shoe to drop or be thrown at my head. (Which has happened).  Once we hit 7 o'clock I thought, "Maybe we made it"

Bedtime. Big sigh of relief.  We did it.  A calm day.

There was no yelling.  No tantrums.  No meltdowns.  He was content to play and just hang out.  I haven't had a day off that was so pleasant in EVER.

I can't help but wonder if the planets were in the right alignment?  Or did I correctly say or do the routine perfectly?  How do I do it again?  How can we recreate this? Because I've been driving down this autism road a long time.  I will pay for this somehow.  Something is gonna happen.

Plus you know what's nuts?  I feel bad.  I know there are other ASD families out there that didn't have a good day.  That this day was nothing but stress.  I'm sorry to you that it was.  I assure you next time, you'll be in the clear.  You paid your autism karma debt today.  You'll get your day.   When that day is, I am not sure.   As much as our kids love that calendar, they never do tell us when these great days are gonna happen.

Tomorrow is gonna kick my ass isn't it?  ;-)

Are you fluent in autism?

Autism.  It's own culture.  My Facebook page has made me very aware of this.  I am not just a visitor in Autism Land.   I have established residency long enough to run for public office.  I'm sure I could secure the French Fry vote.

I live in a world of ASD, ABA, IEP, GFCF,OT, PT, OCD, ADHD, SIB's, EI, PDD-NOS, PROMPT,inclusion, brushing, sensory diets,input seeking, stimming, flapping, perseveration, echolalia, pica, etc... I know some of you reading this right now are like "what the what?"  Please google. Mama's tired.  But those of you that haven't been voted off the island, you all know what I mean.  You may not know where your car keys are but dammit you can rattle off your kid's APGAR scores still.  

I come from an unusual if not lucky position.  I was in the biz before we decide to "go pro".  Working in a special needs school.  Who knew it was a much needed internship for my future.  So some of the language was familiar but let me tell you, no less scary or confusing.  And every now and the husband looks at me like a U.N. translator at our school meetings.  Even after all these years it can be culture shock to be in this autism land.  

It's taken some time to get used to the customs of this place.  How the inhabitants often don't care for eye contact but on the upside they don't rudely stare at you if make a cultural faux pas.  A quick high five with minimal contact is way better than a firm handshake and when you're happy and you know it flap your hands! I'm so up my kid's bum to adapt to my world when I really ought to give him some of the same respect.  So yeah, rocking back and forth and pacing does feel pretty good and really it's not much different than just swaying to the music.  Hell, Quiet Riot told us to "Bang Your Head" and to "Come on feel the noise". Perhaps they were just totally aware of the joys of sensory seeking behavior.

So it looks like I'm here to stay.  Really it's not like I got a choice to go.  I guess I'll just dive right in with the natives and order another side of fries.

Common sense is a super power isn't it?

Here I am a week later and I am still the Gypsy Mama Fry on the road.  No power still thanks to Hurricane Sandy.   Another nor'easter on the way today, that I guess will knock out the power I don't have anyway?  And cancel the school that's already been canceled.  I'm so confused.  (more so that usual) 

Anyway, camping out at Chez Grandparents.  They were lucky enough to have power! Very kind and or crazy enough to invite all of us, dog included to stay.  Having had enough of living Little House on the Prairie in the burbs, we took it.  They have now gotten to witness the 24/7 of what goes into Autism LIVE!  I'm thinking it's a blessing my dad wears hearing aids and therefor adjusts them accordingly. 

So I started Day 10 of no power by calling the electric company again.  They think putting me on hold with 70's easy listening music is gonna make me just crumble and hang up?  HA!  Clearly they are not familiar with an autism mom's work of constant phone calls to doctors, school, therapists, teachers, insurance etc.  Bring it on biotch!  I got no problem singing along to Chicago's "If you leave me now" until my call is picked up. 

Today's representative was pretty decent and seemed to put on a good act of being concerned with my family living with relatives and needing to get our lives back.   Yes, I did pull the Autism Card and stress the importance of how utterly hard this up in the air was for him.   How he's missed two weeks of school and will most likely regress in some way.  Her suggestion?  "Can you stay at a shelter?"  Really?  Oh yes a large county building filled with strangers and chaos, yes, that would be ever so calming to him.   Just when I think that surely all this "Autism Awareness" is doing something, someone has got to prove that they are out of the loop.   While I will always be the first to say I don't expect everyone to know anything about autism if they don't have to like we parents do, here's the thing.  Use common sense.  It can get you very far.  Does that really sound like a good idea for a typical kid?  Yeah guess what?  Not so much for my kid either.  

Rock You Like A Hurricane!

Not just a fun cheesy 80's tune!  Dudes, this week at French Fry Inc., we lived it.

So if you follow me on Facebook, (You don't? Well go do that now!  I'm a funny gal) you know we are from the Jersey shore and are currently living it La Vida Amish with no power, limited water, no heat and to strike fear in all your hearts, NO COFFEE!!!  We are incredibly lucky.  No damage to our home.  So many lost theirs.  If I have to pay my karma by using gobs of dry shampoo this week, I'll take it.

Of course in an autism house, well a power outage is a little bit different.  No wifi?  No YouTube to watch Japanese toy commercials? Holy crap we are in trouble!  If I ever met the person that only created the portable DVD player and the car charger with it, I would probably fall to my knees ala Wayne's World style telling them I wasn't worthy to be in their presence.  Seriously that dude, I love you man!  Yes, I was that person charging stuff in my car during gale force winds.  When you are an autism mom, a hurricane doesn't scare ya as much as a kiddo off his routine.

And he is so off his routine.  No school all week. He understands its "Hurricane Week" and "no power". I wonder if he now thinks this time off will be an annual event.  Every therapy and fun thing canceled.  Not sure if next week we'll even get back to "normal". Well whatever that means right?

I write this now from a conference room at my husband's office, which luckily had power restored.  He sits and watches another DVD.  I rest up because I expect another epic meltdown bedtime as it has not been good at night.  I wonder when we finally go back to the usual, what of his will be lost?   I have seen regression for every illness.  Why would this be any different? Will we lose those new foods he's been eating?  Or his development in starting to seek out other kids?  Will his new found love of Math be gone?  Which would suck cause I was really hoping he would explain algebra to me one day.

Last night we found a lone McDonald's open and ran in for dinner.  One thing didn't change.  All orders of fries are still his fries. :-)