Friday, October 28, 2016

Things that still sting

To say that the start of middle school has been bumpy would be an understatement.  It's been a downright cluster fuck.  We keep chugging along because we are determined to get this to work. I will email, phone call, and or meet with anyone and everyone under the sun to get all the ducks in a row for my Kiddo.  It's not even an option.

But I would be lying if I said this stuff wasn't it taking it's toll on my own mental well being. When you are the parent and number one advocate for you kid, you don't get a choice to hide under the covers and give up.  I used to work with this population as well and I think back to those parents who it seemed to me just didn't give a shit about their kids.  Maybe it wasn't that they didn't give a shit. Maybe they had just decided they were done with all this never ending stuff.  They had just had enough.  I mean, how many times can a person be overwhelmed daily before they just say shut down?

Or maybe they just never started. I'm not sure but I'm too far in to walk away.

There are things I have gotten used to with my Kiddo.  Things I have become numb to and things I know longer get my knickers in a twist about.  I am focused on getting Kiddo comfortable with middle school. I can't care about the stupid little stuff because I cried over that long ago.  Then something comes up out of the blue that knocks the wind out of me.

This time it was the 6th grade class trip.  That he wasn't included in.  I saw it on the calendar.  I received the general email blasts that all the parents got about it but it never came up that he was joining all the other 6th graders on it.  No permission slip came home.  No word was mentioned.  Not even an explanation.  Nothing. Nada.

Prior to this school, Kiddo went on every class trip that all the other typical kids his age went on.  He and his classmates were included.  It wasn't even a case of "Oh gee, we're going to be swell and LET him go."  It was "This is the date and pack a lunch.".

And this is where stings.  His behavior has not been ideal. I know if I bring it up the trip, I'm going to get that thrown right back at us.  While the one to one aide has finally been hired, that person still has to be approved by the Board of Education and be fingerprinted.  So I can't even say "But he'll have his one to one!".

It hurts that we weren't even given the awkward phone call or email about it though.  Not even a "Hey, he's still adjusting.  Maybe next year?".  I could come to terms with that.  Right now, it's just another thing that just makes us feel left out.  He heard other kids talking about it in passing.  He knows it happened.

Did I mention this is also the school that does a big fundraiser "Volleyball for Autism" event every year? Which is great that they do because they raise a crap ton of money for local autism charities. I think that rocks but there is a part of me that thinks "How about some charity towards my Kiddo? How about including him? How about giving him a chance to prove that he can do it?  How about at least giving us the courtesy of explaining why he's not included?" I'm pretty sure when this event rolls around the school will be quick to send home information on it and how we can help promote and fund raise with them.

There's just something about that which makes me think "Don't call us. We'll call you, when we need you."

The thing is inclusion means the good and the bad and at least an explanation as to why something won't work and perhaps trying to find a way to make it work in the future.  Not just bits and pieces here and there.
This damn trip was like a line the sand.  I have to pretend it doesn't sting as bad as it does because I have to pick and chose my battles.  But all I can think is if the Kiddo noticed there was a trip he didn't go on, I bet the typical kids noticed it too.  At the same time, he's still in the weeds with this transition.  I guess we'll just have to let this one go.

Till next year. ;-)

#TeamQuirky will rise again.  After this round. 

Tuesday, October 18, 2016

Planning to be spontaneous

One thing that the new BCBA noticed about the Kiddo and his behaviors as of late was his fixation on the motivators he was working to earn.  He would get so worked up about getting to the reward that he could not focus at all at anything else. Which then usually led to MORE BEHAVIORS and no amount of reminding him "What are you working for?" could settle him back down. It was just like pouring gas on a fire. It only made his feelings that much more intense.

And because the Kiddo is a product of years of behavior therapy, if we don't specify a reward he will simply create one in his own mind.  Once that is decided, well, if you know autism you know that is etched in stone.

So what is a gal to do?  Plan some "Non Contingent Fun!!"  Doesn't that sound like a freaking hoot? We have to surprise him with random outings and activities off the cuff that have no ties to anything.  The idea being he will then let go of the fixation of the place and not build it up attached to it as only an earned reward that he could possibly lose.

Basically, we have to plan to be random. ;-)

It also means most conversations about any future events have to take place by my husband and I texting each other so the Kiddo doesn't hear about them before we spring them on him. Good thing we have unlimited texting on our phone plan!

We also need to work on Kiddo's need to hyper control everything.  Because even giving into him doesn't help and frankly, I don't want my Kiddo to become a raging douche.  I kind of feel once you decide to become a parent, you are promising the world you will not create an asshole.  You're going to raise a good person who is kind and flexible.  Of course, we got one with autism so that flexible thing gets a little tricky. It's not impossible though.

We're doing a lot of "Forced Choice".  Meaning, making him pick between two things but the secret is they aren't huge things. Just things that make him feel in control but it's not going to really alter anyone's world if he gets to decide between the green or blue straw. Like you have to wear pants but you get to pick which ones.  Hit him up with a non negotiable that sort of looks like there is some wiggle room.  We're learning to aim small.  Like Daddy Fry said this weekend "You want to go for run or a bike ride?" and then Kiddo immediately replied "Run AND Bike ride" and Daddy Fry got all his cardio in this weekend.  See what I mean? Next time it's "We're going for a run. Want to wear your red baseball hat or your #TeamQuirky one?" (And clearly the answer is the #TeamQuirky one.)   So the little stuff, we're letting him have the power as much as we can so he feels some control without controlling us.

The biggest change in what we are doing is giving extremely short notice when there will be a big change to the schedule and this one dude, I will not lie.  It is scary as feck! We had always been that family that gave him plenty o' warning with stuff because he needed the time to process it.  Since he started this new middle school, he simply cannot handle knowing a change is coming.  It's just an anxiety bomb ticking away.  It was suggested we tell him pretty much the moment before something has to switch.  So he doesn't have time to really stew on it.  It ties in with that whole "non contingent fun" I wrote about earlier.  So far, he's been doing okay with it.  I guess the element of surprise is working in our favor.  It's been a big adjustment though.

I think the biggest challenge though is school knows the plan and we know the plan but the general public, they don't. It's just another thing I have to be on alert for with the Kiddo.  Conversations I have to have before I go places to give folks the heads up.  Plus damage control when someone innocently mentions something because they didn't know it could cause upset.  Like the Kiddo's music therapist has been coming to our house for the last few weeks because he's moving offices.  Well his new office is finally ready and he mentions it at our last appointment that we can meet him next week at the brand new place and POOF!  I can just see the anxiety switch on with the Kiddo.

Did you ever watch Scooby Doo as a kid?  Kiddo's reaction upon hearing changes is very similar. 

And it's a completely normal thing to say to someone. "Next week we'll meet here." but there I was spinning the redirection wheel on the Kiddo.  "Don't worry about it Kiddo. New is Good. Hey, look over there. French Fries!" and I spun that kid out of the house to go score some "window fries" at the Drive thru so fast I think my car left tire marks on my street.

So here we are almost a week later.  The night before the latest schedule switch that he wasn't suppose to hear about but did and I can see some of the anxiety coming.  Daddy Fry and I, we just got to keep this Kiddo busy though.  It means slapping on the smiles even when we might not always feel that chipper but we have to because Kiddo smells fear.  It means planning out every move of our life like a military operation and I don't remember enlisting.  It means having to say goodbye to what used to work and trying something new because what other choice do we have?  It's always having to be "on" even when I am so desperate to find the button to turn it "off".

But that's what it is, so we try.  We tried before and stuff got better.  We can do it again.

Maybe Scooby Snacks would work? ;-)

Tuesday, October 11, 2016

Kiddo's Shot.

"I prob’ly shouldn’t brag, but dag, I amaze and astonish
The problem is I got a lot of brains but no polish
I gotta holler just to be heard
With every word, I drop knowledge
I’m a diamond in the rough, a shiny piece of coal
Tryin’ to reach my goal my power of speech, unimpeachable."

"My Shot" from HAMILTON

This is the Kiddo. This is where we are at the moment.  We know he's got so much in him but damn, getting it out of him is ROUGH right now.

We are in week number four of the new school and things are still bumpy but the good news is the FBA (Functional Behavioral Analysis) and the BIP (Behavior Intervention Plan) are done.  Time to meet up with the team and nine people came together for one Kiddo. You know there's a lot to go over when they have to pull in chairs from over rooms to cram all the people needed for this meeting around the table.

Reenactment of what I wore to the meeting. Okay, maybe not but I didn't wear yoga pants to it. Real pants, people. Real pants. 

That being said, the BCBA (Board Certified Behavior Analyst) had a lot of interesting insights about the Kiddo and his behaviors as of late.  Some of which were some light bulbs switching on moments of "Oh, that's why." and some were "Yes! I knew it!  That's what I have been saying!"

And it sure was nice to realize "Okay, this guy gets him."  I had to restrain myself from leaping across the table and kissing him full on the mouth.  My husband would have understood. He was glad to see this guy seems to get the Kiddo too.

The behaviors. Oy, these behaviors already.  I am so OVER them. I'm not gonna lie. We have been sad about them and we have also been "Oh FFS, Kiddo!!! Why????" about them too. I am trying my hardest to be patient which is ironic because that's one of the issues Kiddo has been having trouble with handling. Zero patience. Zilch. He sees a thing he wants, even if it's an event that's several hours or even days away from the moment and he just WANTS IT NOW.  This isn't just a spoiled kid tantrum about it.  This is an autistic person fixation on a subject.  There's not much one can do to correct this behavior other redirect, redirect, and did I mention redirect?

We are also seeing so many attention seeking behaviors.  For a Kiddo with autism, he has been CRAVING eye contact and constant social interaction like mad! So the best plan to tackle that is keeping him busy, giving him lots of praise for "catching him being good", and no reaction/planned ignoring all the behaviors. Most of these behaviors are seen during periods of less structure, so the suggestion was made to continue making him the classroom "beotch" and keep giving him work and jobs to do.  I've seen this at home too. If he's busy helping, he's happy.

Let's talk about that planned ignoring thing though, shall we? So much easier said, than done.  Especially when the other kids in his class can't stop from being kids and reacting to said behaviors. So even when the staff is all board with the plan, he can still get his negative attention fix from his classmates who are autistic and/or special needs and can't just be reminded "Hey, ignore Kiddo. It's in his BIP."   This becomes a challenging part of this behavior situation.

Funny side story, a bunch of us parents of these kids hung out at "Back to School" night having a good chin wag over things and taking turns apologizing to each other over what our kid might have done to their kid.  "Oh my god! My Kiddo grabbed your kid?  I am so freaking sorry."   "My kid bit another kid. It was yours? Oh damn. I'm so sorry."   No one was upset about it. I mean, hey, I don't want my Kiddo to be bit or to be grabbing anyone.  I get these are the behaviors though in a self contained classroom.  Comes with the territory.  As I told the mom of the boy that just so happened to bite my Kiddo, "I'm surprised it hadn't happened till now."  (And to that mom cause I know you read this, seriously.  I ain't mad at ya or your kid.  I know he's having a rough adjustment too.)

But I digress.

Needless to say we still have a lot of work to get done with the Kiddo. We are doing everything on our end and now the school is doing their part of the load which includes hiring a one to one aide to be assigned just to the Kiddo.  That's right, from now on it's going to be Kiddo plus one.  Now having had worked in a school, this is the part that I am both hopeful and nervous about.  This person will have a lot on their shoulders. I'm hoping like Hell they can not only do the job required but see past the behaviors to that "diamond in the rough".  I'm also eager for them to be hired as soon as humanly possible.  (Hey School Staff that reads this Hey! How's that hiring processing going? You got someone yet?  Get them to get that fingerprinting appointment ASAP.  You know those slots fill up fast. Oh, let that paraprofessional know that I give nice gifts at the holidays and the end of the year. Thanks!)

"It's time to take a shot
Rise up, rise up, it's time to take a shot
Rise up, it's time to take a shot
Rise up, take a shot, shot, shot"

Hopefully this is the shot that works or Daddy Fry and I are going to be "doing shots" of whiskey.  I am so not ready to give up on this working. I know it can. He can do it. We can do it. The school can do it.