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Saturday, April 22, 2017

Sad

I am not sad because my kid has autism.

You know what I'm sad about? It's all the other stuff that comes with the autism that can get bent.  The crippling anxiety, the obsessive compulsive disorder, the sensory processing issues, the hyperactivity, and the one that makes shit really freaking complicated, the intellectual disability.

Ya see, this is the kind of autism that doesn't get talked about in the glorious month of Autism Awareness.  Or at least I haven't seen it because my social media feeds is swimming in all the feel good inspiration memes.  Or the token stories of an autistic person that has some special awesome talent.  Which is cool. I don't begrudge these memes or stories but they are just so constantly one sided.  It's hard to feel hopeful and renewed when I know that this will never be our story. Not even close.

I have an almost 13 year old kid who still believes in Santa Claus and the Easter Bunny.

I have an almost 13 year old kid who still watching Baby Einstein when he wants to unwind.

I have an almost 13 year old kid who's bedroom looks like the Island of Sodor exploded in it.

I am not sad that he's not into typical teen aged boy stuff.  Although, to be honest, I'm not sure what that would even be.  What are they into?  They seem like such mysterious moody creatures but I'm pretty sure it's not searching for out of production Blue's Clues DVDs online. (Thank you sweet baby Jesus for eBay.)

I get sad that even when I am planning something that should be a fun, it's coupled with so much stress and back up of plans in case it goes bust.  Since it has so many times before. It makes me not want to go anywhere some days and I really have to talk myself into pushing him and myself outside our little comfort shell and try.  Plus, Kiddo has a built in bullshit detector. He knows when I am faltering. Just for once I would love to just be able to say a thing that should make him happy and not have to pull out a social story to go with it.

I think what gets me the saddest is that for every "feel good story" that I see my "civilian" pals sharing, I wonder do they really get what the day to day grind can be like? No mainstream media is covering that story.  The worry, the stress, the frustration.  Guess what folks? It's not fake news. It's our life.

And you know they aren't the ones reading this blog.  It's cool you guys are here but man, I kind of wish they were so they could get it.  I'd invite them over but that has it's own stress filled complications. Unless they bring "window fries because well, fries.

That's the stuff about autism that I want people to be aware about.

Here's your token inspirational shot of my autistic Kiddo walking a long journey.  Wait, I forgot to slap a puzzle piece on it! 







Wednesday, April 5, 2017

The Stupid Ass Stuff I Still Do As An Autism Parent.

I wanted to touch base with the Kiddo's teacher and the BCBA at his school.  While they are pretty good about answering emails and communicating in the notebook, there's nothing like a face to face sit down.  As I was driving to my umpteen meeting about my Kiddo, I couldn't help but feel nervous.  It's not me we are meeting about.  Why am I taking it so personally?  It's hard not to when the topic of the conversation is about a person you just happen to have grown inside of you for nine months.

But despite the fact that the Kiddo is twelve and has been in school since the day after he turned three, this is the stupid ass stuff that I still do as an autism parent.  Worry about every single meeting and have that general sinking feeling of "being in trouble" with the school.  I suppose our time at the town's babysitting *cough* pardon me, I mean "middle school" also has not helped with the general feeling of meetings.

And what happened? It was a pretty good meeting. We covered a lot.  There were no real surprises. Discussed a lot of different ideas of what works and what doesn't.  By the time I left I was feeling rather happy about it all.  So what the heck Mama Fry?  Why do I get myself into such states of mind?

Here's another example of the stupid ass stuff I do.  If you have been following this blog for a while, you know all about "WTF Wednesdays". If you don't, well, long story short. Kiddo hates Wednesday because autism.  Honestly. That's all I can say to explain it. It's just one of those thing #TeamQuirky things about him that I've learned to accept.  Anyway, I heard from the teacher today that he had a much better Wednesday than I thought he would. (I had emailed her this morning that he was wound for sound and to give her a chance to either gear up or fake being sick and call out.)  What was different about today? She kept him SUPER BUSY! Like she always keeps him going but she really cranked up the special jobs for him today and he loved it.  Kiddo loves having a job.  She even got him an extra shift at the school store for him to do today.

I was telling my husband this tonight and he just chuckled and said "Wasn't this the exact thing we told the old middle school to do with him? That they never did?".  Yep, it was.  We told them that time and again and they never fecking did it.

So what stupid ass thing did I do? I started brooding on it. I went back full force to that time and place with them when we were all so super miserable.  Why? What is the function of this?  It serves no purpose. We are never going back there. It's pointless.  But yes, let me just get good and miserable for the sake of it. Let me just waste my time and be angry at how they failed him.  Somebody call Cher and get her to slap me and yell "SNAP OUT OF IT" Moonstruck style at me.



Fixating, it's not just for my Kiddo.  I am guilty of it too.  Good gravy, I'm the one that's suppose to be raising him and teaching him how to navigate through a world not made for him and I can't even get my shit together.  I need to write a social story for myself.

"It's okay to remember bad stuff.

It doesn't mean it's going to happen all the time.

Just remember to take a deep breath and order another side of fries."

Then end. :-)
"Geez Mom. You thought I was the one that obsesses too much? Now let me get back to looking up different manufacturers of school buses."








Thursday, March 16, 2017

He may be your client...

But he's my kid.

You see a name on a folder. I see my heart walking outside of my body.

Since November we have been working with a state agency called Perform Care. It was recommended to use by our school district caseworker.  She sung the praises of how much it would help. I eyed her over my glasses because I knew she had no idea how all this stuff works.  Suuuuuure. It would be just that simple.

Here it is, middle of March.  Ask me if a Behavior Therapist has been to my house yet? Better yet, ask me if the caseworker assigned to my Kiddo has EVEN MET the Kiddo?

Yesterday I got to the point of autism parenting that breaks me.  Being so frustrated that I cried while I was speaking. If you get me to that point, your ass better run. I can blow off anger. I can shake off being sad.  Making my mascara run down my face because I am trying to get the therapy my Kiddo needs, I hope you have your affairs in order and have made peace with your maker.

I am so freaking tired of this dance.  The amount of bureaucratic nonsense is astounding. To all the school caseworkers and teachers in New Jersey that say "Call Perform Care" to the parents of the students they serve, I'd like you to know that it's close to pointless to suggest it like it's a solution that will end the problem. The only thing Perform Care has done so far is make me have dozens of meetings and hundreds of phone calls. It is a glorified run around of paper pushing.  Every meeting ends with whatever person this caseworker has sent du jour recommending another thing and whatever that thing is, they don't do. "But call your caseworker!"

I lost my ever loving shit yesterday. All over the phone to multiple people. I keep hearing from them how they serve the whole family and yet the only person in my family that sees or talks to them the most is me.  I didn't sign up for Perform Care. I signed my KIDDO up for it.

And here we are, all these months later, and he still hasn't been seen by a behavior therapist. Each phone call to make another appointment to discuss things means another week is added on to this.  I'm ready to throw in the towel completely with this agency because it's just a lot aggravation with no payoff.

Of course, I can't because I need to have my son in the system. In as many places in the system as we can get him.  So as much as I just want to throw up the white flag and both my middle fingers at this, I press on.

By the end of the day yesterday I had managed to schedule yet another meeting with another agency to come see my Kiddo and maybe they'll be able to offer him services.  I'm not holding my breath and I'm pretty sure in the Kiddo's file is a big note that the mother is a raving lunatic.

I'm okay with that. :-)


Get frustrated. Cry. Scream. Repeat. 


Monday, March 13, 2017

AngelSense. A review and peace of mind.

I am often asked to recommend a good GPS device. One name that I have heard time and again was AngelSense. So I was pretty happy when the company reached out to me and asked me to review their product for my blog and become a part of their affiliate program.  (Full disclosure. They provided me with the device and a few months of service for free.)

Now bolting hasn't always been an issue for the Kiddo till this year. Call it puberty. Call it all the changes in the three schools he's been in less than a year. It doesn't happen a lot but it has happened. He's also in a program now were he goes on a lot of outside the school instructional trips.  Twice a month his class stops at multiple locations on a single outing. Yeah, this "Smother" gets a little worried about that.

I will be very honest. I was extremely skeptical when I received it. It is kind of big but I have to say my son doesn't seem to care. I have it pinned in the pocket of his coat for now.  Come summer I will have to pin it to his waistband of his shorts.  Here is a short video of what it looks like and how to attach it to clothes.  You are given a special magnet key that helps take off the fasteners.  You cannot remove the fasteners without it.  Kiddo tried. That thing did not budge.

Here's a clip of what you get and how to attach it. 


This works in conjunction with a free app you can download to your smartphone.  The app itself is very user friendly. You can also set it up to send you text and email alerts when your kid is "on the go".  Another feature that I loved was it clocks how fast the van/bus goes with my Kiddo on it.

Oh Helllllo Speed Demon Van Driver. Let's have a chat, shall we?  (And now we have a different driver.) 

I can now track exactly where he is on the ride home.  That's pretty handy to know when I have to put on real pants and a bra to get him off the bus. ;-) 

When your child stops somewhere it will notify you and ask you to name it if it's a stop your child goes to regularly. (i.e. School, Grandma's, Speech Therapy, "Window Fries".)  I would say we have pretty much all of his usual haunts programmed in there now.  This has been great on the days when he has that multiple stop class trip. I can see exactly what part of the trip they are on.

Another neat feature. You can "listen in" to your child's environment simply by pressing a button on the app.  You can then listen on your phone to what's going on.  With all the changes that keep happening with the Kiddo, this has been a good feature just to check in on him.  It was highly amusing to hear him rattling off the exit signs on his bus ride to school.  My only complaint about this is it is really easy to get addicted to listening in ALL THE TIME.  (Helicopter Mom much?)  I've managed to ween myself off of this.  It's nice to know that I have it should we need it.  Also, it needs to be noted that what you hear isn't always crystal clear. It can be muffled sometimes but it's kind of to be expected. It's really no different than if you had your phone in your pocket and butt dialed someone.

You get about a day's worth of battery life with this.  It means charging it over night and I have a text alert set up to both remind me to plug it in and to attach it to the Kiddo the next morning.  Also a nice feature as I am Hella forgetful.

Translation: "Get off Twitter and go put the device in his pocket!" 


All in all, I went from "Well, we'll see if this works." to "TEAM ANGELSENSE!"  It's serious peace of mind for this autism mom and I'm kind of kicking myself for not have tried it sooner.   (Especially when stuff was so bad at his old school.)  If you have been following me a while now, you know I don't usually post product reviews or affiliate links. It's usually because the stuff folks send me to review does not live up to the hype.  I don't want to waste your time or money getting your hopes up.  This product, for us, works. If elopement is a worry of yours or just want a little extra security, this is money well spent.

If you are looking to order one for your loved one with autism or just for more product info, click here!AngelSense (Full disclosure. This is an affiliate link, which means I will receive a commission if you purchase this device using this link.) So if you have been wondering about this product, I can say it honestly delivered and then some.

Side of fries for you AngelSense!














Monday, March 6, 2017

Don't be a jerk.

I've been blogging about autism since 2012 but autism has been in my life in some way since roughly 1998 or so.  (I worked in a private special needs school before I had the Kiddo and leveled up.) Here's what I have learned in almost 20 years of this stuff.

Don't be a jerk.

Or an ass. Or a dick. Or the curse word of a choosing.  Whatever floats your boat. I'm not telling you how to live your life.  

But what I will say is it never ceases to AMAZE/HORRIFY me when family act like jerks to those in their family with autism and to their immediate caregivers. Seriously, what is with this crap?  There's not a week that goes by where I don't get an email to my blog saying something along the lines of "My family does not get it. What do I do?" Or "We stopped getting invited to family gatherings because of our kid with autism."  Or the one that really makes me hit the roof, "Our extended family invites our typical kids places but doesn't ask to spend time with our autistic ones."

Let's face it. You have to be a real special sort of asshole to invite the typical kid to something and purposely leave out the autistic one, while hoping like Hell that the parents either don't notice or mind.  I will be the first person to admit that you have to know when to hold 'em and when to fold 'em when it comes to taking your autistic kids places.  You have to be realistic. You're looking at a woman that scheduled her father's funeral around her son being in school because being quiet during a solemn ceremony would just not have happened and it was much better for the Kiddo to stay on his routine at the brand new school he had only just started a few weeks before. 

But this shunning that I see happening far too much in families, that shit has got to stop. It's not just autism families I see this in. All disabilities seem to get a taste of this.  Really?  Aren't we all better than that?  Have we not evolved well past sending all those with any sort of disability off to some institution.  Never to mingle with the rest of the world again. Come on!

Now before you may go "But...but...but... We don't know how to be with those autistic kids.  We don't know what they need or how to do it the right way."  Well newsflash for ya, neither do their parents.  Believe it or not we were not given a swag bag at the diagnosis that comes with an instruction manual.  They're learning as they go.  Join the class.  Learn with them. They are the ones with them all the time.   Consider them the smart kid in the class that you can ask to help you with your homework.

I'll even give you a little cheat sheet/Cliff Notes version on this.  Planning an event where both autistic and neurotypical events might be tricky but it's not impossible.  Clearly parents that have kids of each do it EVERY SINGLE DAMN DAY!  Ask their caregivers what's the best kind of thing for all involved.  That's all you gotta do.  That's it.  Ask.  BOOM! Pretty easy.

And if you think you aren't hurting those kids both autistic and neurotypical when you do this mess, I can assure you, they know what you are doing.   All kids can smell bullshit.  Some might not be able to say it with words but I know that Kiddo can lay some side eye on a jerk that can make that person question all of their life choices.

If you are that autism parent/caregiver that currently has this happening to you, I'm sorry. It sucks. There is no excuse for it. At all. If your family won't change, well, family can be made too. Find your tribe and stick with #TeamQuirky.  You know I'd share fries with you all any day of the week. My Kiddo might announce when it's time for you to leave because autism but you get it. You live this flappy lifestyle.

In the immortal words of George Costanza....





Monday, February 27, 2017

It's okay to feel frustrated.

"They say misery loves company
We could start a company and make misery 
Frustrated Incorporated"
Soul Asylum

Last week Kiddo and I were co CEOs of Frustrated Incorporated.  It was a weird week.  After a four day holiday weekend, there was a whole lot of Monday in our Tuesday.  Kiddo was NOT. HAVING. IT. I was kind of discouraged by that but tried to brush it off as just going back to the routine after four days of doing whatever he wanted.  Then Wednesday was here and I kind of had a little hope it wouldn't be that bad this time because there was a school wide trip to a local kid's museum.  Maybe we could skip that whole WTF Wednesday/let's rush the whole day to get to the thing he wants after school (music therapy).

Nope, it's like I was new here or something. He proved WTF Wednesday is portable and took that meltdown show on the road.   Two solid days of misery.  Surely we can just get back in the saddle for Thursday.  We never see behaviors on Thursdays at school.

WRONG!  Wrong again Mama Fry.  Kiddo decided that he really needed to obsess on getting to school on Thursday and do nothing other than running on the gym treadmill.  (Which is an activity he "works" for. It's his idea of fun.)  So he had gobs of behaviors about that on Thursday and I really was scratching my head at this point thinking "What the Hell is with this week????"  Three in row.  We haven't had that since his days at the old awful middle school.

Friday was better but not perfect either.  Lots of anxiety. Lots of grabbing.  I can't figure out what this is. I don't think there will be an answer to his anxiety or a solution on how to solve it. It's driving my around the bend and I can't help but think if I'm ready to rip my own hair out, he must feel even worse than I do.

Cause this isn't about me but at the same time, I can't help but take it personal. I can't help but get frustrated.  I can't help but get anxious because he has so much anxiety.

All the stuff that we do to help him, I am seeing that all it does is make things worse.  He can't "work" for anything without that becoming part of the behaviors. He starts to fixate on the reward so much that it consumes him.  It already was hard enough to find things that motivates him. So little does. To have these things then become part of the problem makes me feel like I'm banging my head against a brick wall.  We ask for help and this is what we get and it's only compounding the problem.  What are we suppose to do here?

And just when I think we have a clue to the problem and some solutions to nipping stuff in the bud before it starts, he manages to find a way around that too.  It's like he's looking to be miserable.  There is just no other way to explain it. We try not to tell him about big events or switches to the schedule because he gets so fixated on them.  So if we say nothing special is coming up, you know what this kid does? He'll take a run of the mill thing in his routine or day and turn that into the big special thing and fixate on that instead.  It's baffling.

Plus there is the stuff we simply cannot hide from him that he will always obsess on, like birthdays and holidays. I can't exactly surprise him by hiding Christmas or his birthday. Did I mention he's twelve?  So yeah, let's add moody teenage hormones to this mix.

His other big behavior when he isn't in a mood is to just scream, growl, roar and yell.  ALL. THE. TIME.  Constantly. Yes, constantly. He's getting some sort of sensory input from it as well. I have yet to find an appropriate replacement behavior for it. Planned ignoring doesn't work. Addressing it doesn't work.  Mommy losing her shit about it and yelling at him for yelling doesn't work. (Yes, I'm aware of the irony but every Mom has her noise limit.)

I won't lie. It's hard to keep finding the silver lining the longer this stuff all goes on.  When you have a kid who's hobby is waxing nostalgic on all the times life has disappointed him and prefers to find ways to stay focused on frustration, it's hard NOT to join him in that feeling.  And when he's not doing that, he's just screaming so much you find yourself wondering "Is it possible to sprain your ear drums?"  The two moods this week were miserable or screaming like Ozzy Osborne on a bender.  It's stress on a shit sandwich.

The only thing I can do is just own the fact that it's okay to get frustrated with autism. It's even okay for me to feel frustrated with him.  I'm a parent. He's the kid.  That's a tale as old as time. I'm not the first mom that's thought about selling her kid to the gypsies and I won't be the last either. So no, I'm not going to feel guilty or stay stuck in that feeling for long.

It's okay for me to get sad. It's okay for me to get pissed off about it. It's okay because I know Kiddo is going through all this stuff too.

On Friday my husband made the very wise suggestion we eat out at a local beer garden. That idea was more than okay. I married a keeper. 









Friday, February 17, 2017

Kiddo and the new school. An update.

As some of you long timers might know, Fall of 2016 was the year of DRAMA with school and the Kiddo. Long story short, we wound up having to switch schools mid year.  We were really worried about it.  It meant touring schools with him in tow and trying to find the magic combination of one that would take him and one that would suit him best.

We got lucky and seem to have found one that is providing what he needs and more importantly, he likes it! I just realized the other day that almost three months have gone by and I found myself thinking about what's changed. For the most part, it's been steady on progress.  Both academically and behaviorally.  I would even say socially he's a bit more engaged lately.  He scripts a lot about the different staff members there. He even started to wonder what do they do when all the kids go home at night and delights when I say the same answer of "Home to their families! They don't live at school!"

It hasn't been without hiccups.  A few weeks ago we had to make a transportation switch. Kiddo was just not doing well on a bus full of kids just like him.  It seemed to be a ripple effect. One kid would go off, they all would go off. He was butting heads with another kid.  The school and the bus tried various tricks. It just wasn't working. It was suggested the route would be changed but the driver couldn't do it.  It was time to get him private transportation.  Door to door. Just him, a driver and and an aide.

And this was a tough switch for him to swallow because it meant riding in a mini van and not the bus. He really loves school buses. Mainly because they remind him of Thomas trains because they are all numbered.  However, this is what we had to do. I can't have him having behaviors on a bus everyday just because he likes riding the bus.  I didn't sugarcoat it with him.  "You're going on this mini van now to school. Sorry that bums you out but we can't have that behavior on a bus."

It's been two weeks now with the mini van and I have to say, that's been going really well.  I asked the driver "Well, how has it been?" and he told me "He's been awesome. I don't know what behaviors you are talking about. He's been great!" (I had given him a heads up about "WTF Wednesdays".)  I noticed his anxiety on Wednesday mornings before school has lessened too.  So maybe this was a step in the right direction.  If it helps having a shorter route for the Kiddo to go to school, maybe that's something that they can arrange down the road for him to be a on a bus again with other kids.  I also know realistically that's what I want for him too. He's not going to be driving. He'll always need some sort of transportation and it most likely be with other people.  It's something we'll have to tackle with him. Learning how to cope with longer rides. Dealing with other people's behaviors and reactions to his.  We'll get there. I'm just happy that this current "Well, let's try this and see how it works." actually seems to be working.

His school does a lot of trips that focus on independent living skills. I love that they do that. He has to make shopping lists and has a budget. (They have them buy all their snacks for school.) He has to find what he needs in the store and then bring it to the cashier.  Then they all go out to lunch and he has to order his own food.  (That part has been his favorite. If he had it his way, Kiddo would eat out for lunch every day.)  They work on laundry skills and cleaning too. He's been showing off his prowess with vacuuming.

Another part that makes me happy is all seeing the academic work that they do.  It's clear to me this teacher follows the best rule about autism, "Presume competence."  They do social studies, science experiments,  spelling tests, etc.  All the stuff any middle school student usually does.  (And in his case, all the stuff that his old middle school wasn't even bothering to do.)  He has homework again! He grumbles like any 12 year old would about having to do it some days, but hey, I'll take that milestone.

My favorite part is that they have put this Kiddo to work.  A busy Kiddo is a happy Kiddo. He has a job at their school store, which sells snacks and drinks. He loves it!  I like to ask him "What was the hot seller today?" and he usually happy to report that Cheez Its are still the big seller. On Thursday the teacher had him delivering flyers to all the classrooms in the school and he loved doing that because it meant also getting to do his favorite hobby, wander the halls and saying "HI!" to everyone.

We still have bumps and bruises.  It's not perfect but it's progress.  I feel a lot more hopeful than I was a few months ago. Fingers crossed that this feeling keeps up.

Kiddo chilling with a classmate over a mutual love of trains.