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: /http://rockyourspeech.com/)

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."

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. (http://themighty.com/2015/09/to-the-presidential-candidates-bringing-up-autism-in-the-debates/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=Facebook_Page)

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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.  

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!

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. 

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.  

Meh.

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.