Wednesday, December 30, 2015

The break is breaking me.

I will admit it. I'm not just a mother.  I am what can best be described as a "Smother" (Props to my Kiddo's speech therapist for turning me onto that word.)  He is my only kid.  Add autism to boot and I hover over that kiddo like nobody's business.  I am hyper aware and probably more anxious than him in new situations.  I am always living in a state of perpetual freaking out.

The older he gets, the more I realize this behavior of mine is not doing either of us any favors.  Despite my plan never to die. (My current plan for the future. Rational, right?)

No time like the present to start pushing both myself and the Kiddo outside our comfort zone though to start building more independence.  Inspired by one thing.  This winter break which is going to break me.

I get it. He's off his school routine where every minute of the day is planned out up to and including when he goes to the bathroom.  There are also no therapies this week because those folks are selfish and want to spend time with their families. Pffft. Whatever!  So we got the perfect storm for a meltdown brewing daily just hovering over the house every single day.  Add the excitement of "SANTA!" and tons of family gatherings with folks that don't always get the #TeamQuirky lifestyle. ("You brought a Happy Meal for his dinner???") I guess you could say that both the Kiddo and I are out of fucks to give.  It's now Wednesday... Gawd! It's only Wednesday?!?!  Crap! I still have a lot of week to fill up.

I found myself online yesterday researching day camps for breaks.  Cause despite me setting down some plans for the boy this week, it's still not enough for him.  Even scheduling "Okay, now we're going to have iPad time. Or DVD time. Or play with toys time." ten seconds later he's on me like a rash to be his personal cruise activity director.

So what happens then?  He goes to his coping skills.  Stimming.  Which would be fine if it wasn't non stop screaming like a possessed howler monkey who just pounded back a couple of Red Bulls.   And it's not just him screaming. Oh no, my boy is a scream connoisseur.  When he is not shrieking like a banshee for fun and sport, he's looking up YouTube clips of other people screaming.  Perhaps to be inspired or just enjoys the sound. I'm not sure.  It's a sensory thing I just do not get all around.  Meanwhile I can't use the blender in my house to make a smoothie because that's too loud.  Huh?

Just looking up a program where I'm pretty sure he would enjoy fills me with heaps of guilt. Like I can't hang and handle this boy for a simple winter break?  What the hell is wrong with me?  I used to deal with autism as a job before I went pro with the kiddo.  Yep, I signed up for it.  Of course the difference being I clocked in and then after a while, clocked out.

And I know going into each and every break with the Kiddo what's going to happen.  That eventually we will both hit a point where we are sick of each other and just miserable.  It just seems like we hit that point a lot sooner lately.  Maybe if he had a sibling this would be different.  I don't know.  I just know he's needing a structured routine with multiple social interaction that this one mom show cannot provide.

I mention the idea of signing up for this local camp thing (It's all throughout the year) to the husband unsure of how he might respond.  He immediately said "Let's do it." He was ALL IN.

I just sent in my email signing up for more details.  Seems right to do but also scary.  Mostly right though.  Could be great. Could suck balls.  Only one way to find out.  I just know when to hold 'em and when to fold 'em.  I need help.  I'm hoping this can do it.

Okay, it's not all screaming. Sometimes he's quiet for like a hot minute.  

Wednesday, December 23, 2015

Me too.

Sometimes a parent needs to hear "Me too.", including the parent writing this.

Be it about an experience, a feeling or a result, who knew two words could pack such an emotional punch? A simple "Me too." can make my day.  I feel less alone.  I feel like I can go on. I feel like autism is the trip with my tour guide that I was suppose to take.

But for every "Me too." comes a question.  "What will happen when your kiddo reads all this some day?" to that I say honestly, "I don't know but I'll be writing about that too." Cause I will.  This blog forces me to be honest about subjects I sometimes would prefer not to address at all. You think I won't address that issue too?  Let me put it another way.  It would be the greatest gift in the world to me if my Kiddo could read this one day and understand that it was all about him and me putting our lives out there.  I welcome his outrage and anger.  He has every right to those feelings and any others that might bubble up about it.

You think I'm first mom to write about her kid?  HA! That's been going on since forever. I would venture to guess that some of those prehistoric cave paintings were some parent griping about their kid not cleaning up after their pet Wooly Mammoth or some shit like that.   The autism mom blogger isn't a new concept.  We didn't invent the wheel.  Even if I stopped, five new blogger are born.  I know this because they usually send me their stuff to read.  (I swear guys. I'm trying to read it all. Be patient with me! My family occasionally likes to see me without my phone in my face.)

I know I personally need the "Me too." because it's sometimes made all the difference in my behavior and attitude.  I still wrestle with how I feel about autism daily.  I have to give myself multiple pep talks A DAY to get through it. In fact, if you ever see me writing a note on social media pages that sounds like a cheerleader who has double fisted a couple of Red Bulls, it's because I needed to give myself a pep talk to get through that day.  Cause this shit is hard and you will never convince me that it's not.  Nor will you silence me into shame for even thinking it.

And just when I am ready to lose my mind, my Kiddo has a wonderful way of reminding me he is just as confused about this all as I am.  We hug it out with a big "Me too.".

Nobody is wrong with feelings.  It's what you do with them that counts.

Sneaky ninja hugger Kiddo. Always making me forget what I was upset about. 

Tuesday, December 15, 2015

Quit comparing your kid!

This isn't a blog post for you. It's really for me.  For once again I am guilty of comparing my Kiddo to another child.  Not only another child BUT another AUTISTIC child.  So if this is where you thought I had a clue about autism and were following this blog for ideas and advice, you might want to rethink that choice.  Or just laugh at my expense. At least I will be providing an entertaining service.

We were out for dinner and another autism family we knew came in.  We're all happy to see each other and probably both thinking "Sweet. Now my kid won't be the only noisy one here.  #TeamQuirky ready to raise da roof!"

We go back to eating and I hear the other Club Spectrum member kid order from the waitress what he wanted. By himself. With no prompts.  Just rattled it off including asking for a dietary substitution based on an allergy.  Total self advocacy for the win.

And I found myself immediately thinking "When will the Kiddo do that?  He always orders the same thing here.  It's not like he doesn't know what he wants.  It should just be a routine by now.  Why do I have to keep prompting him to order?" My brain is spinning into overdrive with this and I have to take a breath to steady my nerves.

It's so ridiculous of me.  Yes, that kid can order his dinner independently like you would expect any typical kid his age to do.  It's also quite possible it's only at THIS restaurant that he can do it at.  Maybe he can't do it anywhere else.  Maybe he wouldn't react well if he was told by the wait staff that they were out of that item and to pick something else. Or they couldn't make the substitution he wanted, then what?   Didn't happen so I don't know.  I have to engage in this type of thinking so I don't drive myself bat crap bonkers.

All these years into this AND I still need reminding to get my own ass in gear.  So what this kid could do this and mine can't or won't?!  You meet one person with autism you have met ONLY ONE PERSON WITH AUTISM!  It's quite possible my Kiddo does stuff that would make this other kid's mom wonder "Well why can't my kid do that yet?"  We all have different skills.  One of mine just happens to be getting caught up in comparing my Kiddo.  (Dumb, Girl.  So freaking Dumb!)

But that's this autism lifestyle.  You're just sitting there minding your business eating dinner and greeting friends and then BAM! It's all in your face what you still have to work on with your kiddo. My mind screaming at me that we are falling behind and we need to catch up.  Like some sort of race that NOBODY really wins. Knocks the wind right out of me.

"OK me. Slow your roll.  Chill out.  Finish your dinner. At least he's using his fork finally."

Okay, so maybe the fork skills still need some work. We'll get there. 

We have to just take this one side of fries at a time. ;-)

Monday, December 7, 2015

Autism and Law Enforcement: Stuff we need to do.

The past weekend I was honored  to be on a panel with The Blogfather aka "Autism Daddy" for the Autism and Law Enforcement Round Table that my good pal "Bacon and Juice Boxes: Our Life with Autism" organized.   Not only is Mr. Bacon a police officer but he is also an autism dad.  He saw a real need to have our autism community sit down and have a conversation with his fellow police officers.  I'm so glad he did and by the time it was over it was clear to everyone there that this won't be a "one and done."  This is the start of an ongoing relationship.  Let me break down some of the highlights that really struck me.

1) HELP THEM TO HELP US.  The information we provide is critical especially at a time of crisis. So if you are calling 911 for anything and your autistic child is there with you, let that police dispatcher know.  Do you have a child that has auditory sensitivity? Maybe sirens would scare the living daylights out of them.  Tell them that on the phone.  They will get that information to the officer responding to your call.  I learned they walk into these situations not knowing much other than what was reported in on a call.  So speak up on it.  It could really help both sides.  Believe me, they WANT to know how to help you.

2) Contact your local police department.  Let them know your child has autism and/or any other health conditions. This information will be stored in their data base. They referred to it as "Being flagged" which is police speak for "Stuff we need to know that helps us assist you."   Again, it's to help them to help you.  Bring your child with you to the station and meet the local cops. Let's face it, the uniform can be a tad scary/intimidating for some kids.  Help smooth that out by meeting the people behind the badge.  Bring cookies cause who doesn't love a snack? (OK, that part is optional but I bet it wouldn't hurt!)

3) "What happens if I'm in an accident and somehow incapacitated and cannot tell a first responder "My child who is with me has autism."  Now if that's not every autism parent worst nightmare, I don't know what else could be worse.  However, this stuff can happen and it's better to be prepared for it.   One of the cops said immediately the first thing he is going to do is look in your glove compartment for your registration and then your cell phone for contact info.  So why not add to it a small index card with it that says your child's name, diagnosis, medications, emergency contact person and add "May not respond to questions or requests." or "Non verbal" or "May wander" etc.  Pretty much the stuff you WOULD say if you could say it that would help them.  Just stick it with your car registration and in the car of any one that drives your kid on the regular.

Same thing with your cell phone.  I only know for the iPhone but in your contacts that first listing that says "My card" and you click on that and it's all your information, your numbers, email addresses, spouse name, etc.  There's a big red star that says "Show Medical ID".  You can not only fill that out for medical info on yourself but include with it "My child has autism." yadda, yadda, yadda, all the stuff I just mentioned in the previous paragraph.  BOOM!  Done in 30 seconds.   Each of these things takes little effort to do on our part and can help them to help us so much.  Hopefully you never need to use either but won't you feel a bit better knowing it's there?

Throughout this discussion one thing was really clear to me.  They want to know more. As comments and questions came from the audience and other panel members, smart phones were coming out.  These guys were texting contacts they had all over to get the information for the answers.  Business cards and emails were being exchanged all over.  I even got to meet the chief of my town who wants to do more outreach programs for the special needs/autism community.  That's when I peeped up "Yoohoo Neighbor! Right here. Oh you betcha bottom dollar I would be." In fact, in other towns, these programs are going on.  Check with your local station to see about that.

My Fry Friends, we are used to being the squeaky wheel that gets that grease.  This is no different. If you feel like your relationship with your local police isn't good, no time like the present to start fixing it.  I hear time and again how scared a lot of autism parents are of the police but more often than not it's not based on real life experience that happened to them.  I get it. Hell, I have it too sometimes.  My Kiddo is only getting bigger.  It's one thing to be a small child.   A grown man that's not making eye contact or responding to someones questions, well that shit can hit the fan quick can't it?  What am I basing this on?  Probably the stories I read online.  You know how social media loves it some viral horrible news.  The good stuff doesn't get the same kind of attention at all.  That's a real shame.

It's on us too to have a good relationship with law enforcement.  I know that there are some reading this now that are probably chomping at the bit to write their tale of horror with their local police department.  Guess what?  The police also know some police suck.  Just like we have to acknowledge that not all autism parents are good parents.  I'm not a saint.  Are you?  Didn't think so.

Bacon and Juice Boxes, me, and Autism Daddy.  I wonder if that Hummer is available for rent to drive to IEPs. Wouldn't it be awesome to roll up in that like a "G" to the school? 

The men and women I met this weekend want to help us but they need help from us to do that.  I have a feeling this won't be the only roundtable that happens and I'm looking forward to where this will go next.