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.

Time

"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.  

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.