Thursday, July 23, 2015

You think I'm happy?!?!?!

"You get what you get and you don't get upset.
Be happy that you have anything at all."

I hear the Kiddo playing this song from one of his ten thousand children's music Cd's that he prefers to keep scattered all over his room.  (Why keep them in their protective cases when you can scratch them up?)

I can make a thousand jokes in this blog and social media. I can proclaim that it's more fun to laugh than to cry.  I can sit here and tell you that the world moves on despite hearing your child has autism.  It doesn't mean that I have to be happy all the time with this life.

Because if I was, that would be bat shit crazy.

And if I was, you would probably want to know what type of medication was I on and what dose.

Or if I was in drunk.

Or possibly visiting my relatives in Colorado.

It is extremely stressful to live with someone with autism.  It's extra stressful when you start to discover in yourself that you are right there with them with the sensory processing component, anxiety and social confusion.  Sometimes I swear the Kiddo and I are just sitting around my house trying to "out quirk" each other.  He's winning by a landslide most days.  He's the kiddo. I'm the mom. Of course, his needs come first. That's a given.

But what about his "wants'.  You know what I mean?  His tween age hissy fits of stomping around and eye rolling so epic I'm convinced they'll will get stuck in the back of his head.  He's eleven.  He's an only child.  The husband and I refer to him in sentences like the following.

"Did you run it by The Boss?"

"I don't know about this.  You better not let The Boss find out!"

"Did The Boss like it?"

We've made it quite clear who's running French Fry Inc and it's not us.  I don't think it ever has been.  I'd be lying if I said I didn't mind.  I'm flipping tired. I'd like the Boss to give my co worker and I a day off.  Hell, I've been working for the company a long time now. Haven't we accrued some vacation time by now?

Even though you get what you get, I will get upset.  Thinking an autism parent can be perfectly happy and content all the freaking time is effing insane.   You want me to be totally accept it?  Let me have that process of getting there.  Realize I will have my moments where I'll run to it and away from it with equal passion.

I am happy with my Kiddo but am I always happy with our situation? Depends what day you ask me.  Or hour.  Or minute.  That's just where I'm at with this at the moment and I make no apologies for it. This life gets to me.  Don't let the humor fool you.  I have just as many shitty parenting moments as anyone else.  Sometimes, I really relish in the pity parties I throw myself too.

But he's the only thing I got.  So I blow my nose.  Splash water on my face.  Pour myself another cup of coffee and make him another side of fries.

Monday, July 13, 2015

Jumping to conclusions

"I can tell he's very high functioning."

Oh really? Just by seeing my child for all of two minutes jumping at an indoor trampoline park you are able to fully assess his cognitive ability and executive function skill set.  Gee, why was I on that long ass waiting list so my Kiddo could see that child neurologist?  I could have just brought him to Sky Zone and have an employee take a look at him when we were first on our autism journey.  Would my insurance consider that "out of network" I wonder.

And when I start to explain to the employee just how subjective that is and how it's really not cool to just announce to a parent what YOU think where their child is at, I can see he's very confused.

"Well my wife works at the "Such and Such" private special needs school and she told me about these kids with autism and..."

That's great you talked to your wife but here's the thing dude. My husband is a lawyer.  I talk to him about his job and ask questions all the time about legal stuff.  I don't think that has given me enough knowledge to pass the Bar Exam.  (Although I have never been known to pass a bar. HEE HOO!)

Please tell me, what is it suppose to look like?  Or not look like?  Would you ever think of going up to anyone else and say "Gee, your kid looks really low functioning."  No, I'm thinking something might just stop you from doing that.  No matter what you thought in your head.  You might have enough of a social filter to NOT make that assumption.

Now take that feeling and run with it.  Go with it my dear.  Your preconceived notion of what autism is suppose to look like and it's functioning levels has got to go.

My Kiddo can read but he can't physically hold a pencil with enough of a grip to write his name.  He can however type like a madman.  He can open up the computer and pull up his ongoing Word document and get cracking.  He can't however tie his shoes.  He can change the ring tones on my phone.  He can't dial a phone and talk on it without being prompted the whole time by an adult.  He can listen to his music therapist play a note on the guitar and then walk over and find that note on the piano.  He still needs help wiping his own ass. Hell, he still needs reminding to do it in the first place.

I guess this really got under my skin today. I'll be the first to admit to it.  But for the love of my sanity, please stop thinking you or anyone else knows what autism and it's functioning levels looks like.  You don't. I don't either.  Yeah, can my "A" dar spot one?  Sure. I tend to be able to find my tribe and you all do the Team Quirky flappy gang sign back.  But functioning level?  Come on! That's just rude.

Oh, your utter shock that I would also want my boy on the one big court that was open to the general masses was ridiculous.  While I appreciate a special court just for Team Quirky, not all the members need or want it.  I know what my boy could handle.  That main court wasn't crowded and HELLO, all this work we have been doing is so he can try to do things like ANY OTHER KID.  We've been coming here to the special needs jump time for a few months now.  Just let him try!  That's all I ask.

Jumping to conclusions. Well, we were at a trampoline park.  Guess it's to be expected. ;-)

Thursday, July 2, 2015

We aren't perfect but we aren't push overs.

We were out of our hotel room for a large part of the day on Monday.  So imagine my surprise right before dinner to find an anonymous note from another hotel guest complaining we were "walking too loudly" in our room over theirs.  It wasn't just a simple polite request. It was vile. The nastiness in this note is both burned in my brain and yet a confused jumble of insults that I can barely recall. 

The husband took it and crumbled it up with a "Screw 'em.  We made noise in the afternoon?  Big deal. It wasn't in the middle of the night and..."  I grabbed the note back. I could not just let this go. Especially when the room above our own was noisy with it's own pattern of little feet.  However, the afternoon? Who cares? 

I had 3 choices.

1) Write an equally nasty note and be a coward like them and stick it under the door then run but I'm 41 not 12.

2) Go right to the room and pound down the door and then their asses. (I may binge watch OITNB but I know I would not do well in prison.)

3) Be mature, go to the hotel management and use this as a chance to educate and advocate. Plus, if these folks were going to be an ongoing issue, I wanted the staff to be aware of it.  

I went with choice 3 and straight to the front desk. I handed over the note. I asked if it was from them (I really didn't think it would be but you never know. Again, covering all my bases.) and I was quickly assured it was not. Then I started talking. I said "My son has autism. He is no angel or perfect. He's also 11. Yes, I am sure someone has heard him now and then being "too loud". Please know my husband and I do our best. We are on him CONSTANTLY. This is our fourth trip here. We keep coming back because this place has been so accepting of him.  They may of had to endure 10 minutes of noise. I endure it 24/7. We deserve to be here just as much as anyone else.  If they would like to talk to me, have them call me. I would love to talk to them. I would love to tell them about the autism that lives with us and also goes on vacation.  

Oh, also remind these folks it's  1) A hotel. Not your house. You're gonna hear noise. 2) A FAMILY resort with about 100 kids running around. Go to a convent if you want silence at 4 o'clock in the afternoon. 

And by then three other desk staff had crowded around listening to me. Passing that note back and forth and just in stunned shock. Then came a slew of apologies from them. I appreciated it but honestly, there was nothing they needed to apologize for. I just wanted to be proactive in case there was more complaints. I told them again to please call me if there's a complaint but remember. I am trying my best. If you saw the Kiddo that first came to this resort five years ago and who he is now, you wouldn't know it's the same kiddo.  I slapped the note down on the desk and walked away.

We had dinner. I ordered a large glass of wine and tried to shake it off.  Up till this moment, we had been having a really good vacation.  It's one thing to be called out for all the ways your kid behaves. It's another thing to be harassed for it.  Seriously, I have never read anything so obnoxious and think about it. I'm a blogger. You know the comments I get sometimes?  Dudes, if I'm offended you know it's bad. 

We did our usually routine of lots of swimming to get that much needed sensory input.  The Kiddo was snuggled in his bed with a movie.  Husband and I were chilling out and there was a knock on the door. A hotel staff member hand delivery an apology note and a box of chocolates. We were very surprised but at the same time grateful.  It was clear the resort was not happy with the other guest's way of handling things but also understood the challenges we face.  

Sadly, the person that made the complaint, not a word from them. In a way I wish there was some way to talk to them.  Maybe you are also wondering why I didn't post of picture of their note. That really wasn't a hard choice to make.  Should I add another "Look how mean people can be to us" anonymous note to be shared around social media?  What would that really do at the end of the day other than make many people who already have a lot on their plate feel even worse.  Plus, I was in no mood for the thousand of perfect comments from perfect parents who have perfect children who are perfectly behaved 100% of the time.  Or even better, the ones that don't even have kids! (Looking at you Kate!  Make sure you leave me a comment about my feral child and how it's all my fault.  Like you usually do.  You know, that one standard insult that you copy and paste on EVERY autism blog you troll. Hey, maybe you were in that room.  We could have had drinks and you could have the chance to tell me to my face what a terrible person I am.  That would have been fantastic! Damn. Miss opportunities.) 

You see, I get angry a lot. I have learned that unless you do something about your situation, nothing gets better.  A way to see some change is to make some.  I'm not saying my Kiddo is perfect in every situation.  Neither is the way I parent.  We can have a conversation about it though.  I want to have a conversation about it.  Two sides just being bitchy and pissed off at each other not speaking, please.  We are all better than that.   Deciding to go the hotel staff and being upfront gave me the chance to see all this awareness work we all do IS working.  

To that person, we could have shared a side of fries.  Or I could have thrown them at you.  One or the other. ;-)  But seriously, if you ever witness behavior you don't understand, ASK.  Talk to us.  Listen.  I want to have the conversation.  

And dude, I'm sorry if my Kiddo's flapping feet ruined your vacation for roughly ten minutes in the middle of the day but your anonymous note was a douche move.  Thanks for giving my family that memory.  It's going to last a lifetime.  

OK, bring on the hate comments! :-)