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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

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.

Wednesday, August 12, 2015

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.  


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. ;-)




Thursday, July 2, 2015

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

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

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

I had 3 choices.

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

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

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

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

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

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

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

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

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

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

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

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


OK, bring on the hate comments! :-)