Tuesday, July 26, 2016

Angry at Autism

Since it's the summer, the Kiddo has a much different schedule. While he does attend an ESY (Extended School Year) aka "summer school" program, it's only four days a week and it's only for six weeks of the summer. Which leads to us have a lot of free time on our hands. If you are living the #TeamQuirky lifestyle this isn't the best idea to have gobs of unplanned for time in front of you and a Kiddo who thrives on structure.

So Mama Fry has to keep this boy busy. There are no lazy days of summer at French Fry Inc. As the years have gone on this gets both easier and harder to do.  Easier in the sense where I can say "Okay Kiddo, I have to hit the grocery store, post office, and pick up the dry cleaning. We're leaving at 10AM. You in?" and he will enthusiastically declare "YAAAAAASSSSSS!" like a drag queen who just found out Lady Gaga is working on a new album. He's just always game to do whatever and outings have gotten easier. Or I have just learned enough to make them work. I don't really know. I know enough not to question something if it's working.

But then they get harder as well because Mama Fry here gets cocky. I have a good couple of days with the Kiddo.  He's content and the behaviors are pretty chill and I start thinking BIG! Plus even though the summer goes by so quickly, some days feel like forever, ya know? I'd rather have some plans laid out and I don't want to always take him on errands.  I want to do fun stuff too.  There's also only so many kid's movies, beach days, swims in the pools, outings to the park or runs to the drive thru for "window fries" a gal can do.

What about New York City?

This is the idea I got in my head the other day.  I live at the Jersey Shore. Day trips into the city are easy enough to do. It would mean taking the train in and back. Hello? Did someone say "Train'?  That Polar Express movie watching Kiddo would already be down with this idea just based on the ride in and out of the city alone.

We could easily hop on one of those open air double decker tourist bus and go for a spin to see the sights. He's been on them before and he freaking loves them. They are right around Penn station. Getting on one would be cake.  Hop on and off and go somewhere for lunch.  Another thing that's gotten a bit easier. NYC is a city of hot dog carts on every corner. Feeding him wouldn't be an issue.

So what's the problem?  The flipping bathroom.

He's going to have to go but where? Usually my husband takes him. I, an adult female, cannot walk into a men's room with him. There is no way on God's green earth I am sending him into one ALONE. Oh HELLS NO. Not gonna happen. Twelve year old autistic kid with an intellectual disability and limited verbal skills. All the NOPES that ever NOPED!

So take him in with me to the women's room? Well, that's getting harder and harder to pull off.  For one reason, the Kiddo.  He can read restroom signs and he knows which one he's suppose to go into and what one he's not. Let me tell ya something, for a kid with limited verbal skills he let's his displeasure of being dragged in with his Mama be known. Loud and clear. The rules being THE RULES. There is no swaying his line of thinking.  I've been able to so far to plan some of our other outings around places where I know the bathrooms are single stall set ups, so sending him in isn't so scary.  Eventually I'm going to have to let him go into a big bathroom by himself. Just not planning on starting that at Penn Station in Manhattan which is where he is going to want to go right away after being on a train for a while.

I actually had a moment of "Okay, what guys do I know in the city that could meet us and walk the Kiddo into the men's room so he could go to the bathroom?" and that's when I realized that's probably gonna be hard to pull off.  Really, can you imagine getting that request? "Please come meet us so you can go watch my Kiddo go take a piss."  Yeah, not happening.

And this is when I get angry at autism. Like stupidly, irrationally angry at autism. I wanted to be able to surprise my Kiddo with "Forget errands. Let's go to NYC!" and have him think "My Mom ROCKS!". Instead, I'm stuck on where my son can pee because I worried for his safety. There are just too many risk factors of what could happen to him or what he could see that I cannot take that chance.  It frustrates me to no end that so much of our lives just seems to be ten times harder than most families.  I can whip up invites to a pity party for myself really quickly.  Those parties suck. They don't even give you goodie bags.

I can get very angry at autism.  I'm not proud of that but that's where I am sometimes in my life.  The only thing I can do is try to channel that anger into doing something productive with it.

Like looking up what sit down restaurants are in Penn Station that I could take the Kiddo for a side of fries AND using their stand alone bathroom which I could stand watch over. ;-) Now that could work!

Furrowing your brows just gives your wrinkles and I'd rather earn them by laughing. 

Thursday, July 14, 2016

Thick Skinned

"How do you just deal with the comments and the ignorance and the looks? How do I get that thick skin that you have?" 

This part of an email I found in my inbox over the weekend.  I get this question a lot and I get why I get it a lot.  Apparently I have a no bullshit attitude. I can't say that description isn't accurate.

Is my skin thicker than most?  Well maybe it's just a case of being more used to those types of reactions towards us than it being thicker.  Experience and time is a Hell of a healer for those raw feelings of vulnerability.  Accepting that there will always be those not so accepting is just part of this #TeamQuirky lifestyle.  Sometimes it's a case of just simply being unexposed which leads to them being unaware about autism.  I can't get mad at that.  I can educate that. I can enlighten that. I and Kiddo can spread the good autism word all over that but I'm never mad at it.  (Truth be told, sometimes I get a little "You have got to be kidding me." with those folks because I think the world is really tiny and the stats are really high and how can anyone NOT know someone with autism by now.)  Getting annoyed though doesn't set the best tone for another person to be open to learning though.  So I swallow it.

Now willful ignorance? Plain old judgemental super parents?  The ones that are more concerned with being righteous than actually right? Cover your eyes and clutch your pearls those who can't handle  foul language but I have to unleash my inner Jersey Girl here.  FUCK THAT NOISE!

For those who prefer a kinder and gentler statement, I'll let indi singer Tori Amos say it for me.

"I'm gonna free myself from your opinion."
Tori Amos Unrepentant Geraldines

I guess that's a classier way to say it. ;-)

Every time you waste the time and energy caring about what some asshat has to say about you, your kid and your family, a baby unicorn cries or the terrorists win or an angel weeps or whatever analogy you need to get it in your head.

If someone is clearly ignorant to what is going on.  If someone is wondering out loud why your kid isn't talking, responding, interacting, or whatever autism challenge du jour you got going on, tell them why.  That's the first thing that's going to make you feel better and help you start to get that thick skin.  Doesn't matter if the person in question is 8 or 80.  Open your mouth. Be the voice that advocates and educates.  Do you think you just get a callous overnight? Nope, you got to do the work to develop one.  That starts by speaking up.

Now of course if your kid is mid meltdown or you really got your hands full, you cannot sit and have a "Come to Autism Jesus" conversation.  That being said, if a kid on the playground wanders up to yours and says "Why doesn't he/she talk?", tell them.  Don't expect the parent with them to do it. You do it. Give it to them straight from the source. As age appropriate as you can.  Right to the point.  (And when I think about it, this applies to adults too. Keep it simple.)

I know some folks might be thinking they need some pile of snappy one liners and comebacks but honestly, save those for the real jackasses of the world.  "He/she has autism" is really the best opening line you need.

If they are an asshole about your kid, I assure you they are an asshole about lots of other things too.  Don't waste your energy trying to change them. Give them a straw because they SUCK!  Seriously, that's how you get that thick skin. You just stop giving a crap.

Just an FYI, red lipstick pairs best with a IDGAF attitude. It's just science. 

Monday, July 4, 2016

Vacation Recap!

Now considering that my last blog post featured a picture of a bruise the Kiddo left on me, you might be thinking "She just took him on vacation?? Is this chick crazy??" The answer to both would be a resounding "YES!"  But if you are unfamiliar with our family, you will soon learn that it takes way more bodily harm before we stop. I have almost three weeks to fill before this Kiddo starts ESY (Extended School Year) aka "Summer School". It's way easier to keep him busy by being on the road.

I've written before on how we travel with our Kiddo and what tips and tricks work for us. You can read that here if you like. 7 Travel tips when your kid has autism

I've also said many times that each trip teaches me new things to do or not do for the next one. I'm not saying this trip was perfect but it's certainly one for the record books. This trip came with some new challenges. It was going to be at a new place and the Kiddo was coming off several bad weeks of anxiety. My heart was a bit weary but the alternative of sitting at home looked less appealing. Plus my husband works hard and the only way for him to actually stop working is to take him out of the state with the promise of seeing another Presidential home. That man loves him some Presidential history. (James Madison to be exact in this case.)

Not the Kiddo though. Kiddo and I chilled poolside while Daddy got his history thrills. 

This year French Fry Inc vacationed at the beautiful and freaking HUGE Omni The Homestead Resort in Hot Springs, Virginia. One thing we have learned with life with the Kiddo, we are a resort family. If the set up is everything is on the property, then it's going to work. Kiddo does much better when we don't have to get back into a car to go out to eat or do things.  (He thinks that means we're leaving.) The place had a lot of stuff to do and even had shuttle buses to take you to the various things, which thrilled the Kiddo to pieces because that was extra fun. Okay, Kiddo. Whatever floats your boat.

We took a nice carriage ride in the woods and I pretended it was Doc Baker giving us a lift into Walnut Grove like in Little House on the Prairie.

The mighty double pool slide where the Kiddo and my husband spent a majority of their time.  

And the lazy river where I spent a majority of my time.

And when he needed a break from sliding, there was a pretty cool splash park for Kiddo to chill in. 

Behold the Bacardi Bucket O'Booze. Cause it's important to have a handle on your drinking! I was sitting on a lounge chair while Kiddo was splashing around sipping this bad boy.  It was awesome. I told my husband we were never ever leaving.  

Eventually we did have start making our way back to New Jersey and the Kiddo was soooooo bummed. BUT we had one more surprise left. 

BONUS WATER PARK!!  Shout out to the Double Tree in Lancaster PA for this sweet set up. We've actually been here before and the Kiddo loved and missed it. So this was a fun surprise to spring on him. 

By now you might be thinking "So all they did was sit by the pool?" and for the most part that answer is "YES". We have discovered what works for our Kiddo and it's not dragging him to a dozen things a day that he doesn't enjoy or have any interest in.  The pool and swimming is his happy place. Why not just kick back at a kick ass one with slides, splashground, and a lazy river? Not to mention BUCKET O' BOOZE drinks for Mom and Dad. We actually got to lay out side by side poolside while the Kiddo played. We did take him on that carriage ride, which he enjoyed. My husband and Kiddo rented bikes the second day and went off on an adventure.  Later my husband told me all the Kiddo talked about was finishing the ride and getting back in the pool. :-) 

We did have some bumps on this trip.  Despite me hoping he hadn't packed it, Kiddo's anxiety came along for the ride too. Although it was less, it was still very present and at times, very loud. We definitely did our part in raising autism awareness all over the joint. Plus as luck would have it, our portable DVD player decided to DIE this trip. Which meant no beloved watching of "The Polar Express" before bed. Combined with the WiFi not working in our room for a day and a half, that's when Mama was pretty sure all was lost and had her own mini meltdown over the Kiddo's meltdowns.  Like that's gonna help? Seriously, why did I do that? Dumb. So dumb. 

Eventually the WiFi got fixed and we just stayed with the constant water theme plan and things settled. I mean, what else can we do here? You just gotta roll with it and tag team each other to take breaks or visit Presidential homes when you need it. 

But this picture in a nutshell shows how worth it the hassle was.  Chocolate milk, hot dogs, AND a side of fries poolside.  PERFECTION! 

I mean, really.  This is "Happy" in a picture. :-)