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.

Monday, November 30, 2015

I just want them to know that they didn't break me.

If you are a woman of a certain age, the title of the post should sound familiar to you. Pretty in Pink anyone?

 Yes, come on. You know the scene.  Andy decides to go to prom anyway even though Blane backed out.  She didn't want that rich boy group thinking they got one over on her.  Andy was smart. She knew as a high school senior that lot had peaked.  She was just getting started.  Hell, her spunk even inspired her male BFF Ducky to show up so she wouldn't have to walk in alone.  I'm sure being hopelessly in puppy love crush with her helped. Even still, he dusted off his ugly white shoes and got his butt there to walk with her hand in hand.   Where she promptly dumped him to go make out with Blane in the parking lot.  (Okay, maybe she wasn't too smart.  I still maintain she should have picked Ducky.  You know Blane would just forget about her once he went to college but I digress.)

This is my mantra when it comes to dealing with folks that don't get autism.  If you are new to all things autism and #TeamQuirky, I swear you will get to this point too.  Seriously, it's an easy attitude to have because you simply will not give a rat's ass anymore what anyone thinks.

Sure, you will still have moments.  Just last night I found myself taking a big old deep breath and turning myself "On" even though I felt quite "Off" as I walked into a diner with my son for our usual Sunday night early bird dinner.  I knew there would be looks and now and then I have even heard comments about the whirling dervish that comes with me to dine.  However, I'm not going to stop taking him places.  I am going to maybe adapt and go about things a bit differently than say the average mom to a typical 11 year old.  (Like early bird dinners because a less busy restaurant helps.) Sticking to it is paying off.  We are loyal customers.  The staff has grown to love the Kiddo.  They all know his name and his usual.  I like to think by doing this we are like a mobile autism awareness and education service.   They get to know more about autism because they've gotten to know more about the Kiddo.

If I act like we are not worthy of being some place, my Kiddo is going to pick up on that anxiety.  He can sniff that stuff out.  This does not mean I go in unprepared and I'm not on alert. I'm not going to feel like I can't be somewhere with my Kiddo.  Nope. Not gonna happen.

My Kiddo is a human.  He's got as much right to be anywhere I damn well please want to take him too.  Even when it would be so much easier to just stay home, I won't. We won't.  No one is always perfect all the time out in public.  NO ONE.  We've all had less than stellar moments.  It's okay.

If your kid is younger than mine, I get it. Believe me. I do. More than you know.   I can't say it gets better.  I can say you will not only just used to it, it simply won't be a blip on your radar anymore. There is just so much stuff to deal with on a day to day, why waste the time to care what they think? Especially if they are strangers.  Yes, I do understand that sometimes some of this bullshit comes from folks we know. Making it extra sucktastic.  Even still, screw 'em.   Don't let their funk bring you down.  It's not worth it.  

I find showing indifference to their attitude rather than screaming rage or weeping tears is a highly effective means to combat the judgement.  I believe Coco Chanel said it best with  I don't care what you think about me. I don't think about you at all."  BOOM! Mic drop. 

So dry those tears newbie parents.  Don't let anyone think that they can break you.

Tuesday, November 24, 2015

The story behind the picture.

You know how Facebook does this thing now called "On This Day" and it's a bunch of highlights of stuff you have posted in the past on that date?  I get a big kick out of it.  (Well, maybe not the day it remembered that my dog had died.  Gee, thanks Facebook for that special memory!) I love seeing pictures from years ago of the Kiddo when he was little and had big squishy cheeks that I just want to reach into my phone and take a bite of them.

Today's shot is one of him when he was 6.  He was in CARS pajamas and laying under the Christmas tree.  More specifically, laying under the tree skirt. Yep, he used to love to snuggle up under the cheepo fake snow cottony fabric like it was a blanket and just stare up at the tree.  Side note, kind of odd we try to pretend the tree is surrounded by some swatch of snow.  Normally snow in the house would be a bad sign but then again, how often do pine trees sprout up in living rooms?

Anywho, it was one of the many nights that he was doing this and I just had to take some pictures to upload to Facebook because it was so freaking adorable I almost couldn't stand it.  I'm all "Look at him!" to my husband, wanting to share sweet moment with him.  Daddy Fry as I recall, wasn't amused.  In fact, he was kind of annoyed.  He was concerned that the Kiddo was going to mess up the tree.

Now practically speaking, he was probably right. (Hey Babe!  Look at that.  You have me admitting you were right in print. You best print this blog post up and frame it!) The Kiddo could of knocked off some ornaments or possibly the tree itself.  He could have been hurt or the dog too.

But all I saw was my Kiddo being his #TeamQuirky self.  I love how his brain works and this was one of those very cool moments where you see an example of how he plays.  Is it typical? Nope.  Is it interesting? Hell yeah! Not to mention, kind of genius.  Who doesn't love staring at a big lit up Christmas tree? I still do.  The fact that he was like "Oh, I'm a tad chilly. I'll just use this cloth here to cuddle up." was pretty brilliant.

At that moment, that wasn't the battle I was going to fight.  So I ignored my husband as I am apt to do and took a billion pictures. On my 97 shot, I kind of got the Kiddo to sort of look at the camera.  Success!

But it's interesting to me now when I see the cute shot that there was more to the story than what appears.  I know that's probably the case for a lot of you who read this too. Even if your kids are not autistic or special needs.  There's always more to that picture.

So just try to remember that the next time you find yourself in a funk about not getting the perfect shot and seeing someone else's and lamenting "Why can't that be us?".  You don't know what went into that.  You don't know if the parents are annoyed at each other or if a meltdown happened 20 minutes later or whatever.

Dammit, tonight I am going to lay under the tree and see if the Kiddo does it with me.  ;-)

Wednesday, November 18, 2015

If I could just get into that brain of his for an hour...

I walked into my bathroom this morning after the Kiddo had used it. On a good day, it's a tad disheveled.  Today?  We have achieved brand new levels of Frat House realness.  Yeah, my Kiddo is fully independent enough to know when and where to go to the bathroom.  Getting it into the toilet though? Not so much so.

And I'm not talking the usual sprinkle or puddle. Not to be gross here but you're most likely an autism parent reading this.  So this kind of TMI, you should be able to handle.  If not, kick rocks.  Anyway, this was like the Kiddo decided to recreate the port a potties at the '92 Lallapalooza that scared me for life.  I had a complete flashback and I swear I could hear Flea from the Red Hot Chili Peppers banging on his bass in the background.

It. Was. Bad.

It was also ALL OVER.  The floor. The toilet.  The bath mat and of course, my socks.  It seemed that Kiddo hadn't even bothered to aim at all.  Like an out of control garden hose at full blast.  (Please, spare me all the suggestions of stickers for the bowl or throwing Cheerios in the bowl for him to aim at.  Been there. Done that.  Still got peed on.)

And I am beyond pissed! (Pardon the pun.) This wasn't an accident.  This was pure "Oh I know I can't pee in my pants.  So I'll just go into this peeing room and pee.  Over everything.  Then I will leave the peeing room and go about my business."

Make him clean it up you say?  Yep, I've tried that. You see, the Kiddo in this situation is the giver of zero fucks.  Cause I've done that plenty of times over with him.  I realized pretty quickly that if he had to go in and pee again, he wouldn't give a monkey's butt if the room was covered in his piss or anyone Else's for the matter.  It was also five minutes before he had to get on the bus.  I knew making him clean it at that moment wouldn't be done quickly or even neatly.  Most likely, I would just be creating a situation where I would have to clean him as well.  I opted for teaching that lesson AGAIN another day.

As I'm cleaning the crime scene later I find myself grumbling "Why does he do these things?  How does he not even care?  I just want to know. I just want to be in his brain for an hour and see things how he sees them!"

I know my Kiddo can, for lack of better words, care about people, things, himself etc.  It's just different how he does it or when and that's so freaking hard to accept at times.  Considering yesterday I spent an hour with his teacher going over the progress he has made lately, I find myself still back at square one with all the things I still have to teach him.

Oh well.  Time to go take a Silkwood shower and scrub myself clean.  At least I know the bathroom is spotless.

For now. ;-)

Tuesday, November 17, 2015

Once more, with feeling.

"Oh my gosh! He's such a chatterbox."  says the waitress.

I just smile and agree.  At this moment I am tired.  I just want to eat my meal as quick as I can because I know the window of acceptable in public behavior is closing.  He's on his last five fries.  He's getting stimmy and loud. We need to wrap this up.

I get it.  She or anybody sees a happy and cheerful Kiddo talking up a storm.  Who couldn't love that?  But that ten second sound bite doesn't paint the whole picture.   If they stick around longer, they usually start to see what I mean.  The flow of conversation is far from traditional and I once again find myself being an Kiddonese to English interpreter to any of them that try to engage with him.

"Oh my gosh!  He's so cheerful and he's got so much energy. How do you even keep up?" says the guy at the trampoline park.

I smile, agree and plop myself on a bench because unlike my Kiddo I am exhausted.  He's been running around like that since 5AM that morning.

"Yep. He's a real hit the ground running kind of kid." I reply.

Again, I will have this conversation where someone will marvel at the crazy and hyperactive amount of energy my son displays.  They will sound both impressed and slightly alarmed by it.  I'm no longer offended.   My kiddo can make the Tasmanian Devil look like Jeff Spicoli after a bong hit.  Folks just don't know what to say when they see him running at full speed.  Hell, I don't know what to say to it either.

Autism living is like someone hit the "repeat" button on the same song.  I find myself having the same conversations with and about my kiddo.  Sometimes I find myself lacking in delivery of these lines and I'm sure it can come across as rude or aloof.  I'm not.  I'm just tired.  I've just had these same chats with you, with him, with others, a million times over.

And you would think by now I would come up with a bevvy of lines to pick from when I find myself in one of these moments. A good actor should be able to improv, right?  More often than not I do because humor is usually how I get through it.  Even still, I have my days where I just show up and phone it in. "Yeah, he's a hyperactive bundle of energy that never stops talking. Yadda, yadda, yadda.  So do you have any coffee and can I sit down?"

No?  That performance didn't work for you did it? Once more, with feeling.  OK, from the top.

"Why yes.  He is just a chatty bunch of sunshine with a peppy go go go!"  How was that?  Better? ;-)

You don't know what else to say and neither do I. That's okay. It is what it is. Let's run it again from the top, shall we?

Friday, November 6, 2015

Meltdown Hangover

After an epic two and half hour meltdown last night of screaming, hitting, throwing things by the Kiddo I find myself wondering what about this is a gift when it comes to autism. 

Please tell me.  It's the morning after and I am still emotionally and physically hungover from it.   I always used to describe morning sickness while pregnant as the hangover you had no fun earning.  This too, feels like one.  Likewise, no fun was had earning it either.  

There's that fine line with the kiddo when a tantrum (a defined want) crosses over to meltdown mode and we crossed it last night.  Many times over.  Of course, it was at it's peak just when my husband was walking in the door after a long day of work.  Props to him for not turning around and walking right back out.  Babe, I will not blame you if that's what you do next time.  Just go get a hotel room for the night.  That's what I would do.  

And no amount of going over "What went wrong?" will wipe this feeling away.  It just has to run it's course and yeah, that blows.  This was one of those moments of the Kiddo indulging in one of his hobbies, making himself miserable.  You see once he goes down that road, he likes to relive and hash out EVERY WRONG THAT HAS EVER HAPPENED TO HIM.  It's peaches, I say.  Just a barrel of fun.  It's during this listing of the Greatest Hits of Meltdowns Past that he is both calmed by the listing of them but also recharging for the next screaming session.  

I find myself looking at the clock a lot during these.  Sometimes when he gets started I tell myself "OK, this will be over in an hour.  It will be.  You can handle this."  I have to schedule my feelings to an appropriate time to process them cause I sure can't do it when a garbage can is being kicked over or he's grabbing and yanking my arms.  How is it that I blinked and he went from being a baby to a moody tween but during the meltdown, time just stands freaking still? 

I went to bed last night feeling like I had just down twenty rounds with a boxer.  This morning I woke up just feeling heavy.  There's just no other words to describe it.  He's off school today and I have a whole lot of hours ahead of us to fill. He's as cheerful as can be and it's so hard for me to fully enjoy it.  I just want to scream at him "Why? We work so hard for you? What more can we do? Why is everything we do for you still wrong? It must be because this stuff still happens!" 

But I don't because obviously.

Here I am wondering where is the gift in all this?  I know he has them. I've seen them. I've shared them with you.  I'm listing them in my head but still I am struggling.  When anxiety and the inability to fully communicate with others leaves you crippled with meltdowns, where's the gift in that?  

Oh well, better start the day with him.  I know of no other way to start seeing the gifts of him than just moving forward.  I think we'll hit the diner so he can get some fries and Mama can get some coffee.  That's always helped the fun hangovers.  Maybe it will for the meltdown ones too. 

Monday, October 26, 2015

I'm no longer using the word "Grief" when talking about Autism. Here's why.

Ever have a life event that kind of smacks you upside the head and makes you realize you were REALLY wrong about a certain way you viewed something?  Two months ago I attended a wake for a child.  I still think about that little girl and her family daily.  The experience taught me in a way I didn't expect about how I view autism.

I can no longer say I know grief.  I do not.  Not by a long shot.  I know I have written about finding out your child's autism is a grieving process.  I know I have read similar posts talking about mourning the child you thought you had only to discover autism "took the life you thought you had away".  No it didn't.  Not at all.  I know this because although my child is autistic, he is here. He is making a mess.  He is playing with toys. He is singing the flipping "Bird is the Word" song for the 739 time today.

He will need several prompts to finish chewing his food fully so he doesn't gag.  He will need reminding to not tease the dogs. He will be scared if he sees me so much as open the kitchen cabinet with the blender in it.
But he is here.  I can laugh and sing with him.  I can high five him passing in the hall.  I can sneak into his room at night after coming home from a funeral home and kiss the top of his head as he sleeps.

So yeah, life isn't what I had planned but no life is.  Seriously, the life you see others living.  The one you envy, even to them it's not what they expected.  Both good and bad.  Maybe what I feel at times is self pity, frustration or disappointment.   Perhaps a grand combination of all of the above.  For myself,  I know it is NOT grief.  I choose to not use that word anymore in regards to autism and accepting my child's diagnosis.  It's not a grieving process. It's an acceptance process.

It's an insult to compare it to losing a child.  One I won't do anymore.  Or "mourning" because he is still here.  Yes, it's more work on my plate than I ever expected or even wanted.  I am grateful for it because some parents do not have that luxury of complaining because they are actually lost and buried a child.  They are the ones that have the right to grieve, to mourn for a life they can no longer watch and help develop.

I am not saying this anymore.  I'm not asking or declaring you to do the same. All I am asking you to do is hear me out.  Is your child still here?  Then you currently have more riches in your life than others do.  I'm not telling you NOT to be sad or angry or frustrated with your situation.  It would be utter madness for me to even suggest it.  Hell, you don't even have to like it sometimes.  I just know what I felt when I hugged a mother recently who had been preparing herself to accept a lifetime of medical challenges for her daughter only to now greeting us at her child's wake at a funeral home.

I'm not declaring a right or wrong for anyone but me.  Maybe you'll agree or maybe you won't.  I just feel it's important to acknowledge when I was wrong and how I plan to change it.

Thursday, October 15, 2015

I can't enjoy progress.

Put me in a time out.  Give me a social story.  I am seriously ridiculous.  My Kiddo has been making some progress and I'm sitting here thinking of all the stuff he still isn't able to do.  What the Hell is the matter with me?  That's stupid right?  Why can't I just enjoy what he can do instead of obsessing on what he can't?

Take for example his last haircut.  Now, we have come a long way from the Wrestlemania event it used to be.  One where I would hear the audible sigh from the salon staff when I called to make an appointment at the one kid's salon in the area that specialized in moving targets.  (Let's just say our picture was up in several shops as Persona Non Grata.) It took a lot of time.  Lots of prompts.  Lots of bribes.  We have finally gotten to that place of "I will tolerate this because I will get a highly motivating reward after."

I mention he needs one while we're out and he's game to it.  So since we are in the shopping plaza where he now gets it done as I am mean and won't take him to the kid's place anymore because he can no longer stuff his 11 year old butt in the race car seat, I throw caution to the wind and walk in with him.  Maybe we'll only have a little wait.  I'll hand him my phone.  We'll script a bit.  We'll get through it.

But apparently that day was "Take your kid to get a haircut" day. I didn't get the memo and the joint was jammed. There is no turning around and leaving with this kiddo because once we say we're doing something, it's carved in autism stone.  Well, looks like it's a teachable moment for him on waiting and we'll bring some autism awareness up in this shop today.  Multitasking! I love it.

However, the gods of fate laughed in my general direction.  Despite a lot of people working and a sign up sheet, no one seemed to understand the concept of who goes next.  Combine this with the general noise of three different tv sets going (Just how many different ESPNs does one need?), the Kiddo starts scripting and making lots of stim noises to cope.  Ain't it something how his coping skill to loud noises is to in fact make even more loud noises himself?

It's not long before all eyes are on us.  When folks think they're being slick by slowly moving away from us, lest they catch the autism. It's viral, dontcha know?  "Just getting a new magazine. Oh I will just sit WAY over here now instead."

I stiffen my spine. Chin up. Tits out and just keep talking to the Kiddo.  Trying to keep him calm. I can't carry him out of here.  We are long past those days.

And I'd be lying if the thought of "Dude if you could do me a solid here, chill your mofo noises a notch.  It's like when I want to use the blender and you hate that noise. The noises you're making are making me a bit batty now."  didn't cross my mind.  Like just this once, just sit there.  Like any other kid.

Eventually we do get called for his turn and he gets his favorite girl cutting it.  He does it like a champ.  He even engages in some appropriate conversation.  We pay. I tip generously.  I am glad to get the heck out of there.

I should just be happy that haircuts aren't a problem anymore.  That's huge!  Yet here I am, pissed off that we can't even wait for a haircut without autism making itself very loudly known.   I hate that.  I hate that I am still not okay with all parts of autism and I hate that I will have these moments all the time.  That I can't even enjoy the big progress moments because I am so hung up on the dopey little ones.

What can I say?  I'm a bit of a holy hot mess that way. ;-)

Monday, October 5, 2015


Once a month like clockwork I receive a text from my son's school that they have performed their monthly lockdown drill.  This text is to inform me that it is just a drill and I have no need to be concerned.

Except that I am.  As this is just another reminder of how much my son's autism impacts every part of his life.  I am scared shitless as I don't think he will be protected and safe during a lockdown procedure and it's by his own doing.

You see, you hear about teachers ushering their students into a closet or restroom.  All sitting silently side by side.  You know what my Kiddo is doing during this?  Talking.  Telling the teachers, staff and students that there is going to be a surprise.  A combination of my son's autism and innocence makes him think they are playing a game of hide and seek or it's a surprise party and they have are going to have fun.  He loud whispers to everyone around him to "BE QUIET!" while not picking up on the fact that he himself needs to be quiet in order to save his own life and others.

And I hate it.  I hate that this is part of his educational experience. I hate that autism and his communication and intellectual issues might be yet another safety risk in his life and the lives of those around him.  Kiddo makes a noise, he jeopardizes every person in the classroom closet with him.  He won't mean to do so but it is the reality of the situation.

My heart broke when his teacher first told me about this.  She didn't seem too fazed by it and from what I can tell, he's not the only kid in class that does this.  No concept of the situation and no idea that this is a drill about saving his own skin. I was told it was a skill they would work on.

Part of me is angry that this even has to be in my kiddo's life.  Like what the ever loving feck is this?  Don't we have enough on our plates?  Now I have this concern to worry about as well.  That he will potentially give away a hiding spot to those looking to do harm to himself and others. I thought working on life skills meant learning how to live independently.  Now they include trying to stay alive.

I hope like Hell that I will never even have to think this could be a reality but I can't help thinking about it when that text message announcement comes through my phone once a month.

I don't have a solution.  I don't even have a suggestion.  It's just another complication with autism involved and one that you never even think about it until it's in front of you.

Friday, September 25, 2015

We're All Alright!

This week I had one of the most amazing and surreal experiences of my life.  It took me till I was 41 years old but I finally got to utter the words "I'm with the band." and hang out in a dressing room at a Cheap Trick concert.

This little blog of mine somehow found it's way to Alison Petersson, wife of Tom Petersson. Rock legend bass player of Cheap Trick and inventor of the 12 string bass.  They too have a son with autism.  Just like me.  They also love the power of music therapy, just like me.  They want to bring it to the masses.  They want to empower parents.  Just like me.  So clearly, I like these people.  A lot.  (If you want to check out more about their Rock Your Speech program: /

And because Cheap Trick is on tour and had a Jersey date, Alison invited me to come to the concert.  Like I'd say no? And that's when stuff got weird but amazing weird. Like so not my life but I like it weird.  Because not only did I go to the show.  I got to go backstage.  I got to go ON the stage before the concert.  Check out all their gear.  Take a billion pictures.  Hold Tom's bass which I swear weighs 100 pounds and I had to wonder if he goes to the chiropractor after every show because DAMN that thing was heavy!

I had brought along with me a fellow autism mom and music lover. At one point I turned to her and said "I started my day stripping my kiddo's bed because he peed through the sheets. How is this happening?"

And she replied "Hey! Me too!  Autism Mom high five!" and we laughed and slapped hands.

"Hey. Let's just hang out in the dressing room before the show."  Well sure cause that's my life now.  Like I do that all the time. Tonight, listening to the lead singer warm up and Tom giving a couple picks to my pal whose son plays guitar.  Next week, back to school night and listen to the principal give the same speech he's given for the past 6 years.   Man, next week is going to be BORING!

 I got to meet their awesome kids. Their son was just chilling on his lap top, watching YouTube clips of video game bowling.  And just like that, I was back in my autism comfort zone.  I  knew back at my house, my Kiddo was probably doing the same thing.  Chilling on YouTube. :-)  He was also happy to show us the set list and count the songs to his favorite ones. (Four more to "Dream Police"!)  Something my Kiddo loves to do when listening to Cd's at home.   And Tom is about to go on and I'm thinking "Dude, your dad's work is to rock!" and his son is all "Yeah, I want popcorn."   Which cracked me up again thinking about my son. He's just at his Dad's "office" so to speak.  When we visit my husband at his job, Kiddo HAS to go to the office kitchen and get some water from the water cooler.

In case you have visions of debauchery backstage at a rock concert, sorry to burst your bubble there.  You know we got that kid some popcorn because who doesn't love popcorn? But we had to "First, put on shoes. Then, popcorn." cause we live that First/Then life Fries.  Rock stars or not. :-)

And we rocked out.  Dancing the whole time.  Counting the songs down with Alison and her son till Dream Police played.  Making sure he enough popcorn.  And when he had enough, his mom made a sensory exit.  What member of Team Quirky hasn't done that?  You got to know when to hold 'em and know when to fold 'em.

Tom and Alison, I can't thank you enough for a night to remember.  It was both exciting and new yet very familiar.  Hit me up next time you're in Jersey.  Thanks for reminding me that "We're all alright."

Wednesday, September 23, 2015

To the Presidential Candidates Bringing Up Autism in the Debates

Dear So and So who wants my vote,
Hello! I see you’re trying to court a rapidly growing community. Smart move seeing how large the autism population and those who love and support them has grown. No debating with you on that one. This is more than just a special interest group. You clearly see we want changes, and we make that known at the polls.
Here’s the thing. (You knew that was coming. Sit down, Sir and/or Madam.) You think you know what it is we all want. It’s not as simple as you or your people are leading you to believe. Lesson one with autism: it’s never a simple thing.
Apparently, I was suppose to fall over or do backflips because autism was mentioned during the last Republican candidates’ debate. Did you get my attention? Yes, but not in the way you wanted. All I heard was the same stuff that has been said far too often. The big old vaccine debate gets tossed around and lots of scary words like “epidemic” are bellowed from the podium. Cue the big applause from the audience. 
I’m not applauding a single one of those candidates for talking about autism. Why? Simply because they seem to forget time and time again that all these autistic kids they love to talk about will grow up. Yes Sir or Madam, these kids age! I know. It’s amazing how they grow taller and bigger! I’ve seen it with my very own eyes as my 11-year-old son puts on a pair of jeans that are now three inches too short. 
Candidates, just what are you going to do for these autistic children you love to talk about? As much as I joke about how I can’t die and I have to live forever for my son, let’s face reality. Someday, I will. Who will care for my adult child? Will my son be given the chance to have meaningful employment? Will he have access to proper medical care? Knock on wood, we have been lucky on the health front with our kid, but I know many more who have “autism and…” such as epilepsy, heart issues, diabetes, etc. What about them?
Often I see the government slash social services budgets to bits, citing welfare and Medicaid reform. Did you know our kids, the ones you love to talk about when you’re trying to get a vote, are the very ones who need it? You want me to be impressed you’re even bringing up autism. Impress me more by remembering how much our population depends on these programs you look to trim far too much. 
It’s great you’re talking about our kids. Don’t get me wrong there. Education and supports are so vital to our children, especially in the early years. Just don’t stop the conversation at “children.” Let’s expand that to “people.” Call me when you have some presentations to share about providing long term health coverage, supports, employment and appropriate housing for autistic adults who need it. Then I’ll know you’re really thinking about our kids. 
Be careful when you go to throw out what you think is a buzzword or a good sound bite. We’re listening, and we’re voting.
This piece was originally run on the site, The Mighty. (

Thursday, September 17, 2015

Will they always be so kind?

While waiting for my Kiddo come out of speech, I see a boy come out of his session and greet his younger brother.  Their mom is chatting with the therapist.  The younger boy takes the older by the hand to get his shoes.  (Where we go, the kids take their shoes off before they go into the PT/OT gym.) The older boy sits and puts them on but stops short of tying them.   It's then I notice the younger brother sit down next time him and starts to tie them for him.  He ties one and then the older brother tries to do the other.  The younger one waits but eventually stops him and completes it himself.  All of this happened without a word exchanged between the two.  It's clear to me this isn't the first time the younger child has had to be the "little big brother".   I am struck by the kindness of this little guy.  As a mom to an only child, I can't help but wonder if the Kiddo had a sibling, would they always be this kind?

Eventually, the Kiddo comes out of his appointment and I am distracted from this scene.  Kiddo gets the slip on sneakers I purposely buy because we have long given up independent shoe tying as a goal.  I chat with his therapist and we make our way out.  

"Do the work.  Get the pizza." says the Kiddo. 

"Yep.  You did a good job today.  You earned pizza." and I drive him to the local pizza shop.
I prompt him to order.  The gal behind the counter has come to know him and is wonderfully patient.  She has even offered to buy him an Italian ice from time to time and wasn't surprised when I told her he wasn't a fan of it as his eating habits are a tad "quirky."  She smiled and said "Yeah, my sister too." and with a head nod I knew she was on #TeamQuirky too. I've been a loyal customer there ever since.  She's older than that young boy I just saw and here she is, every week, being so kind to us.  It fills me with hope. 

We turn around when we hear a girl's voice squeak up "Hi Kiddo!!!" It's a younger girl from my son's school.  She seems very happy to see him and the Kiddo is hoping up and down flapping so I am guessing the feeling is mutual.  We run into lots of kids who go to his school.  They all know him.  They all approach him to say "Hello".  It's like they know he won't be the one to make the first social move and they are totally cool with being the one to do it.  They are always so kind to him. 

And that's what scares me.  Will they always be that kind?  That understanding?  That patient, as they grow older.  The middle school years are approaching at a lighting pace.  Right now, he's in that tiny elementary school bubble.  They all know him.  When they all go over to the middle school, will they look out for him?  Will they even say "Hi!" to him?  Four schools go into one middle school.  That's A LOT of new kids that haven't grown up with him.  Will those students simply introduce him as "Kiddo" to all these new students around him?  Will they be kind and pave that way for some new folks to see what an awesome kid he is? 

This is where I hope all this autism awareness and acceptance is rubbing off on people and hopefully trickling down to their kids.  I have hope and I see it in sparks all over the place.  We just need to keep it up.  

Thursday, September 10, 2015

My Love/Hate Relationship with YouTube

I'm not sure who invented YouTube but I wouldn't be surprised at all if that person was a tad on the Spectrum.  To my ASD son, you are a hero.  To me, you are my nemesis.

It starts so innocently.  As a parent you are desperate for ANYTHING that can hold your kid's attention longer than a nanosecond.  You just want to see a happy reaction.  You crave smiles from your child like an addict jonesing for their next hit.  You or your partner thinks "Hey, they really get a kick out of that Empire Carpet commercial. (*sings* 800-588-2300 EMPIRE! Today.)  Let me pull it up on my phone to get them to smile/not scream/distract at this moment."

And that my friends, starts you down the rabbit hole.  There is no turning back.  There is no gate way drug to YouTube.  There's no experimenting.  It's just BAM! ALL YOUTUBE! All the mofo time. At least in our experience.

I do love the fact that it brings my son a lot of joy to find clips of things that he adores. If it soothes him after a long day of school to watch the Sha Boom cruising scene from Disney's "Cars" eighty times in a row, so be it. It's giving him exactly what he needs at the moment he needs it most.

I love it for the distraction/time killing it provides when we are out in a challenging situation. Oh, they're out of fries right now and we need to wait three minutes while they cook a fresh batch? If you are an autism parent you understand exactly how 180 seconds can feel like an eternity.  Here's my phone Kiddo.  I look forward to wiping the chicken nugget grease off of it later.

But lately I've been hating it with the white hot passion of a thousand burning suns.  Why? Because my sweet baby boy child has become an tween age jerk and gets his kicks off watching clips of other kids having meltdowns.  Yep, my autistic kiddo has found clips of other autistic kiddos and is highly amused by them.  It's like autism on autism crime in my opinion.  Yes, this is classic 11 years old typical jerkiness. I've been around enough 11 years olds to know this is typical behavior. So, yay! Milestone met! I think.  Every time I catch him watching it I make him turn it off and I am forced to repeat the same conversation of "That child is having a hard time.  You know what that is like  We do not watch that and giggle. It is not funny."

I have to wonder WHY would you tape and upload the worse moments of someone's life.  That someone being your KID!  Seriously, wtf folks who do that?  That's not raising awareness.  That's just making me aware you are an attention seeking asshole.  That's going to be online forever, following your kid around.  Oh you'll delete it? Great but I bet it's already been copied and uploaded elsewhere by someone else who gets a great kick out of the cyber traffic it drives to their site so all the folks who don't know what they are looking at can wax righteous about how all that kid needs is some discipline and a spanking and a belt and Yadda yadda yadda.

You want your kids to have friends right?  We all strive for that.  Can you imagine your child's school mates finding that?  Or teachers, or therapists or possible employers.  All the people that MIGHT have given them the chance now see them at their worst.  I'm thinking that's NOT going to help in the social relationships. Nor does it help my ASD child to see it.  He loves to recreate it.  He scripts from it!  He thinks "It made me laugh so I bet it will be a crowd pleaser."  I assure you, it is not.

As you can imagine, I'm kind of glad he's back in school right now because it's distracted him from wanting to watch them.  I'm hoping with a lot of prompting and redirecting on my part, we'll get past this phase and as my husband likes to say "Find an ever more annoying stim/behavior to deal with." :-)

Spoiler alert! He always does!

Monday, August 31, 2015

Alone but not lonely

"My son is left out..."

"My daughter wasn't invited to a slumber party when all the other neighborhood girls were..." 

"My kid said Hi to every child on the playground and not a single one of them would play with him..." 

Sound familiar?  If you are a parent and your kid has autism, these phrases might have been said or at least thought by you.  That last one?  That's the Kiddo.  He'll "Hi" everyone he sees but despite coming across as "Mr. Friendly" I'm not burdened by trying to figure out a non stop social schedule.  You know what? I don't care either.  

It boils down to this.  He doesn't care,why should I?  I, once again, have to take my feelings out of this equation.  It's not about me. It's about him.  If he's totally okay with the idea of his social interaction with typical aged peers begins and ends with "Hi!", so be it.  I call my boy the original giver of zero fucks.   Any and every time he's been approached by a kid, he pretty much shows them ASAP that he isn't going to play the games they want to play or talk about the things they like.  Unless they too have a real intense love for YouTube clips about elevators, the conversation will be stilted at best.  So when they realize "This kid isn't playing with me. I'm going to find another kid.", I'm not surprised.

Now sometimes, we will run into a kid who is really patient or persistent or maybe a little of both.  They'll really make a flipping effort to engage with my Kiddo. I'm not gonna lie. That's awesome to see.  They usually turn to me to guide them and to find out the answers to favorite games or things to do that he likes.  I play Kiddonese language interpreter and make sure all parties involved know what's going on at all times to avoid an international incident.  Even then, it's usually way more social for me than the Kiddo. He just doesn't care.  It's partly his autism and partly his personality.  It's just how it is.  I make sure those other kids know it's not them and that he has autism.  Heck, might as well make it a teachable moment for someone.  Despite all the social stories I go over with the Kiddo, being social just ain't his bag, Baby.

Even with other kids with special needs, he needs A LOT of help.  He's has classmates who LOVE to FaceTime each other.  Many a time that iPad rings with an incoming call and he completely ignores it.  I again, am usually the one answering it and making him say "Hi!" at least to the kid calling.  But that's pretty much where it ends.  If he doesn't want to talk on it, I don't make him.  How social would you want to be if your mom kept chasing you down and ordering you to be social dammit!   Despite being on #TeamQuirky, he will be the first one to complain about a fellow team member's quirks too!  Not exactly understanding of another sensory needs or challenges without some guidance from yours truly to remember to be patient and kind.  It's a tricky juggle.  Who's quirks ranks above the other? Right?  Not always an easy answer.

Now I hear about a thousand of you saying "Well that's your kiddo." and you're right. It's my Kiddo and our experience.  I'm not that clueless.  I'm just saying after this many years of autism, I don't sweat that stuff anymore.  It's not a priority to my Kiddo, so I'm not going to drive myself bat shit crazy trying to make it one.  If he's chill doing his own thing, why should I freak out about it?

It's a real "Would of, Could of, Should of" with this Kiddo.  Would it be nice to have lots of play dates? Sure but fitting them in between therapy appointments would probably be tough.  Could these kids just tried a little harder with him? Yeah but I don't expect my 11 year old to be perfect.  So I'm not putting that expectation on any other.  Should he be included?  Of course, when it's appropriate and possible.  At the same time, I'm usually in a panic attack when we do get invited because so many things could go so wrong.  There's just no pleasing us!  Damn, we're complicated.  ;-)

What I have learned and what I do know is this. Sometimes it's all on us.  Sometimes we have to be the ones making the effort and that includes knowing when to back off.  He might be alone but doesn't always mean he's lonely.   Sometimes he's happy to sit at a lunch table full of kids and listen to them talk.  Other times, he's just as content to run across the playground by himself singing "Bird is the Word" at the top of lungs.  You know that old Irish saying "Dance like no one is watching".  That's the Kiddo to a "T". ;-)

If he's the tour guide on this Autism trip, I better follow his lead. 

Monday, August 24, 2015

Why Music Therapy is AWESOME!

One day, a very tired mother and her four year old son with autism were driving home from therapy appointment number 525,600 (give or take).  They had been up since "Sonofabitch o'clock" and the mama really needed something, anything to just perk her up a bit to get her through the rest of the long ass day.

Naturally, she reached for one of Broadway musical Cd's because obviously this was a job for a show tune.
She tossed in RENT and was ready to go to her mental vacation place of pretending to be a starving artist in a NYC hovel.  Squatting in tenement with a dicey heroin addiction sure does make for some show stoppers! La Vie Bohme!

"It's time now, to sing out
Though the story never ends
Let's celebrate
Remember a year in the life of friends

Remember the LOOOOOOVE" 

And that's when she realized as she belting it from the bottom of guts that she was singing a duet.  A little voice that was usually silent save the occasion stim noise or shriek was singing WITH HER.   

And that's when a very tired and frazzled mother said  "WHAT THE FECK!?!?! Are you singing?????"  as she tried to keep one eye on the road and and another on the rear view mirror.  

Sure enough, he was singing what would later become "Seasons of Ove."  (Took a bit more to get that "L" sound down but eventually it came.  All these years later, it's still in heavy rotation on the little boy who is now a tween's play list.

And this is when she well, when I started seeing how music would be a way to get the words out.  I've mentioned quite a bit about how much the Kiddo loves going music therapy.  It's really one of the highlights of his week.  An event that comes with no behaviors. (I know!) Goofy and giddy? Yes.  Meltdowns and anger, nope.  If I had it my way, we'd just live at music therapy.  Or we would just let our therapist move in.  I mean, I'm sure his family would miss him but hey, they could visit in the summer.  We have a pool.  

I thought about researching and giving you a real sciencey (It's a word!)  article about why it's great for kids with autism but dammit, I am not that kind of blogger.  You all know I'm more of a verbal vomit and storyteller.  You want some facts and figures?  You can Google.  You want a first hand experience?  That I can deliver!

What does it do for my boy?  In a nutshell, gives both sides of his brain a workout at the same time.  It's stimulating those synapses to fire back and forth.  It's helping with his motor planning.  For the Kiddo who has trouble walking down a hallway without bumping into the wall, he's able to able to sing while playing piano and then reach over to pick up a tambourine.  All the time while never dropping a note or stumbling a step. Words he cannot say, he can sing.  Any word I now try to help him pronounce I sing to him first.  His therapist said it best "Sing everything!" and by Golly, we sure do.  We are a walking musical in this house.  I've made up songs about taking showers to packing up the car when we take road trips.

If you ever thought musicals were silly because of folks who suddenly burst into song, well you might not want to come on over here.  That's pretty much all we do.  I'm living IN one and I will continue gladly as my son goes from singing words who couldn't even say previously to being able to say them like he's always been doing that.

Besides the speech, this does wonders for his anxiety.  As you can imagine, if you really can't communicate being able to express how you feel becomes nearly impossible.  I liken it to being dropped in the middle of a country who's language you don't know.  How social are you going to be?  Think of the chronic state of stress and frustration you would be in.  The heightened state would do a number on anyone.  Going to sessions makes my son relaxed.  He is happy from the moment he wakes up realizing today is the day he has his appointment.  The therapy is client led, meaning he's really choosing the direction of what's on the plate that day.  I imagine feeling in control of something helps build a trusting relationship between client and therapist. It sure has in our case.

It's also built up his self esteem.  There's no doubt in my mind.  Music is his thing.  I'm not talking some stereotypical autism super power here.  This is just very much part of him.  A singing Kiddo is a happy Kiddo and it's contagious.  The Kiddo has gotten cashiers in supermarkets singing Jingle Bells with him at the checkouts and kids in his school singing "Hey Soul Sister" on the playground.  Although I'm not a believer of making a big deal about eye contact with him, I can't help but notice how spot on it is with him when he is singing or playing piano.

Maybe he and I aren't having the typical back and forth exchange of a conversation all the time but when I am singing with my son I feel connected to him to the core.  Autism isn't the trip I planned on but my tour guide is showing me the song in his heart.  

Saturday, August 15, 2015


Warning! The will not be a post filled with "Gee, ain't autism just dandy and grand?!"  This post was written by a freaking tired Mother.  One who is currently wondering if snorting coffee grounds like Tony Montana from Scarface on a bender might actually keep her awake.  Yeah, it's been that kind of couple of days here at good old French Fry Inc.

Currently, the Kiddo and I are having what some might describe as a "failure to communicate", which the  forecast predicts no signs of that getting better anytime soon.  We spend countless time and money on getting this Kiddo to talk.  In the beginning, every possible motivator is offered in a desperate attempt to just use his damn words.  Eventually he starts to do some basic communication and if your kid doesn't, this is where you are thinking "What the feck is the problem?" Here's the thing.  Teaching them to talk, that's easy.  Teaching them to effectively communicate and comprehend what is being said in return? Not so much so.  In the past three days the Kiddo has requested it be August 25th no less than 374 times.  (We have a little fun activity planned that day.) He's not quite accepting that although I am talented enough to make Tater Tot Casserole, altering the laws of time and physics is not in my wheelhouse.  So he simply just asks again, throwing in that token "Please!" with it because he figures "Oh! She just needs to hear that word that grown ups are always harping on about."   This continues on and on.  He pretty much pours the gasoline on the anxiety fire he built himself.  He winds up melting down.  I wind up in tears.  End scene.

I found myself having to say "No" to a family BBQ invite the other day because to quote my 13 year old niece, "I literally can't even."  (Somewhere her Spidey senses are telling her that a 41 year old has now used this phrase and it's now no longer "on fleek". Opps! There goes another one. Look it up people. I can't Google everything for you.)  Anyway, my one brother in law and his wife is very nice people but organization for a party? Hell, even having shopped for it? Not their strong suit.  Don't get me wrong.  Pre Kiddo, "Oh you haven't started to even cook yet?  Pour me another glass of wine."  Now? I'm in a yard with no fences, no pool, no swingset, much older girl cousins that would rather be staring at their iPhones on Snapchat and no signs of food or anyone actually even suggesting "Oh I guess I'll turn on the grill."  Did I mention they also like to cook amazing things like mojito marinated steak?   Sounds awesome to anyone other than my Kiddo.  So the last few of these I was really trying to roll with it. I was feeding him before we went because I knew there would be little there he would actually eat.  My husband would take him on walks during them around the block to decompress and burn some energy off.   The last time though, lots of anxiety. Lots of pacing.  Lots of scripting.  Too many new people.  Too much of disorder in his eyes.  After three hours, we left.  We hadn't even eaten yet and he was on the verge of a meltdown.  His behavior for the rest of the day was dicey.  Getting that text invite made me sigh.  I just cannot do it to him and I cannot do it myself.  My husband might go so he can have a nice break but it sucks because we were all invited.  We should all go but with no school for the next three weeks and nerves thinned, it's just the sucktastic call that I had to make.  They're disappointed and confused.  I'm just generally besides myself that we can't even do a casual get together without being an effing production.

It is 23 days before he goes back to school and although we've done long breaks like this before, this time of year just BLOWS for all of us.  He is at his most heightened state.  My nerves are shot and it's getting harder and harder to just breath deep and try again.  Combine that with a healthy dose of guilt over feeling all these things in the first place.  So if you are currently crafting your comment to tell me off.  Save yourself the step and know I already feel like shit about it.  You really couldn't say much worse to me than I already feel about it.

And you know what's also in the back in my head?  All of you.  I'm Mama Fry for crying out loud.  Here I am telling all of you all the time to not get stuck in this place.  I know how easy and dangerous it is to wallow in self pity.  It gets nothing done and I'm already two loads behind in the laundry.  I cannot stay in this spot and I am concerned it will take more than a simple side of fries to get me out of it.

Wednesday, August 12, 2015


"My son is four and he still refuses to even try to use the potty and I was wondering when..."

"My kid started OT three months ago and my husband and I still haven't seen any improvement so when..." 

"When did your Kiddo start eating?  I swear I could deal with the picky eating if I just knew when it would end..." 

Every time I see "when" in a sentence about autism and a young child, I sigh.  Not a "Gee, these people are so clueless." one.  More like "Oh yeah, I remember when I still 
couldn't let go of those milestone moments too."  Oh newbies.  Welcome to #TeamQuirky!  A life where you learn schedules really can help your child with autism and yet there's no real set standard of one to follow.  Come sit by me at this lunch table.  I am part of your tribe. 

I get it.  Your little one is in front of you and you are still consulting all your parenting books about what they should be doing at that age.  You see the time slipping away from you.  Why aren't they following the instructions?   You want to fix the problem. You are running out of time!

Here's the thing sport.  You must chill out.  There's a person that needs a time out right now and it's you.  I know. I know.  You're rattling off the screen right now about the importance of early intervention and how your child is falling behind and you have a limited window of time and yadda, yadda, yadda...  I hear you.  I know that song. Hell, I wrote that song.  The milestones?  The benchmarks? Guess who's in charge of that? I'll give you a hint.  NOT YOU!  

It's your kid and yes, I know it's super frustrating. They are the ones the ultimately decided anything.  Any progress or growth,all them. Pretty much the only thing you have control over is you accepting you don't have control.  So, hang on to that if it makes you feel better.  Otherwise, buckle up bitches.  It's a hell of a ride.  

The time you are so hung up will go at the pace they set.  Some of it will be fast.  (Like the Kiddo figuring out how to scale the baby gates like it was his job.)  Other times, it will stand still.  (Usually mid meltdown, when time stands still.)  If you're lucky, you might even get a sweet spot of time when they do stuff just like a typical kid their age.  (Kiddo took to bike riding like water off a duck's back.) Of course, the double edge sword of that time is you will start to compare and contract everything else they can and cannot do and when they did it.  Time is a real mofo like that.  

There is no set schedule to when things are going to happen for your kid and this life.  It's a real pain in the ass that I can't tell you when things will happen for your kid like it did for mine.  I also hate to tell you some of the stuff my kiddo does you kid might never do.  However, that might be both good and bad depending on how you look at things. (Maybe your kid won't think screaming like a howler monkey for fun and pleasure is good idea.  I say you are winning if that's the case.)  Likewise, I bet there will be things your kids will do that mine cannot and I'll find myself wondering "What did they do?  If only I knew what it was so I could go back in time..." Yeah cause that's doable.  

I think Styx said it best about time. 

Is it any wonder I've got too much time on my hands
It's ticking away with my sanity
I've got too much time on my hands
It's hard to believe such a calamity
I've got too much time on my hands
And it's ticking away, ticking away from me  

So try not to get so caught up on the time factor and your kid.  It will do you in.  The only thing it's time for is another side of fries.  

Tuesday, August 4, 2015

Anxiety with a side of worry.

"Want help?" says the Kiddo walking out of the bathroom.

A half an hour away till "melatonin time" and my son's face is twisted up in concern.  While we have daytime toileting down pretty well, there are still bumps in the road but those are getting fewer.  So, I'm a tad alarmed to hear this request.

"What's up buddy?" I ask and then I look into the bathroom and see it.  A rapidly rising, soon to overflow onto the floor poop filled toilet.  SHIT!  Literally.

Me: "OH Noooooo!" and I push past him to quickly turn off the water, which of course will not turn off because whoever turned back on the last time this happened did it with some Hulk like grip.

CRAP! Pun intended because if I don't start plunging the Hell out of this toilet it's going to be all over my floor and my feet. Nononononononononononononono!

And because he sees my reaction to his epic poop that has clogged the toilet for the 739394 time, his anxiety spikes.  He thinks he did something wrong.  Then he starts with the endless loop of scripting, which seems to just fuel more of the bonfire of his worry.

"Want help?  No potty.  No train? Want train!"

"Want train?" is his go to lately.  My husband and him have a new little routine of going to the local vintage train ride on the weekends.  Since this is a highly prized activity and little motivates him, we make him "work" for it.  It's a good way to keep behaviors in check.  When you have something that works, you use it.

This backfires in times like this because he catches my anxiety about an over following toilet.  Which, as he repeats his script louder and louder is only pour gasoline on my own.  Trying to stop the shit show and his impending meltdown. Sonofabitch man. We were in the bedtime zone. We were in the zone!

This is my life. Trying to stop of flow of toilet water filled with crap from spilling onto my feet or the Kiddo screeching like he's being stabbed to death with a rusty butter knife.

Of course, I snap because that's always helpful.  "ENOUGH!" He seems startled and I immediately feel like scum.

I return to the Battle of the toilet and manage to get the monster clog to flush down.  I managed to avoid an epic mess but we are both on the verge of an epic meltdown. I'm washing my hands and softly speaking to him.  Apologizing and reassuring him he did the right thing by getting my attention.  He won't lose the train ride.  I was wrong for yelling too.

I don't want to say that snapping worked but this time, it kind of did.  Or at least it startled him enough to actually stop scripting for thirty seconds. I'm not recommending this as a "go to" method.  Mainly because I felt like a big old jerk after the fact.

Bedtime was extra long time that night.  Extra kisses.  Extra songs to sing.  Extra fuss with the forty two stuffed animals getting in the bed with him.  He seemed to have forgotten pretty quickly that Mama Fry lost her ever loving shit while dealing with his shit.

I haven't forgotten and I probably won't.  I'm not going to beat myself up over it and you know why?  My reaction was human.  Fries, after a decade into this autism stuff, I still screw it up.  Frankly, Kiddo has to deal with the Mama he got just as much as I have deal with the Kiddo I got.  We're both learning.  We both have to cut each other slack.  We both move on. I can't teach him how to move forward without doing it myself.

This anxiety thing. It's a freaking beast and unlike my Kiddo, it's so easy to feed.

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. ;-)