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.

Monday, September 26, 2016

Can't press "pause" on autism!

"Wait. You still took him to go see The Lion King on Broadway? But he's been so anxious and his behaviors!" 

You're damn right we did.  For a few reasons I'm about to list because for some reason, autism parents love to read lists! 

1) The performance was a special sensory friendly showing just for the autism/special needs community and their families/caregivers.  Nobody was gonna care if my Kiddo was loud or flappy.  The whole #StimSquad was out in full force representing #TeamQuirky.  

Show tunes and fries. This is living! 

2) Those tickets were expensive. I wasn't going to "eat them" because of what's being going on recently.  We could do it.  We have done it before. The prior experience was something we could use in our favor and did. 

That's 73.50 times 3. You know how much speech and OT that can buy? Exactly. 

3) I bought these tickets months ago.  Once an event is uttered out loud in this house, do you think we could cancel it?  Oh no, my friend. You are not familiar with the ways of my people if you think it's that easy.  We were committed! 

Kiddo has been studying this since it came with the tickets.  You think all the sudden I'm going to tell him "No Simba for you." Hahahahahahaha! NOPE. 

4) Most importantly. Life does not stop for autism.  Ever. Even when I could really use autism doing me a solid and being like "Oh, let's just give the old girl a break. She needs to catch her breath.", it ever does. God, I wish it would.  To quote another Disney character here, I'm like Dory. I have to just keep swimming while Kiddo keeps stimming. 

"But his behavior!  How do you teach him about consequences?" 

Agree with you there. I do have to teach him about his actions and how to be accountable for them. He does not get a free pass.  However, this is autism, intellectual disability, OCD, anxiety disorder, and ADHD we are dealing with at the house that fries built. This is not a child who doesn't understand the concept of time.  Things have to be very clear. Abstract thinking is not something he can do. We are not dealing with a run of the mill typical 12 year old.  I kind of wish it could be that easy. I'm not saying you parents of those neurotypical kids have it easier. I know the grass is always greener and stuff but I sure wouldn't mind a crack at it though. Just to mix it up. ;-) 

Now the Kiddo did have an activity he wanted to do after school on Friday, which he promptly lost as a result of his behavior at school that day. Was he happy about it? No, of course not and he whined and pleaded but this ain't my first rodeo with him and I stood my ground. He then asked "Work for it tomorrow?" while sniffling and I agreed.  I allowed him to be sad. I validated his feelings even though in my head I was like "Really Kiddo? You want me to feel bad for you about this? Really?" But at that moment sarcasm would be a HUGE mistake. (Before you go "Oh Autism kids don't get sarcasm.  Yeah, they can. Or at least, mine can.) 

And you know what happened with allowing him to cry, and be sad, and script like crazy?  I got some more information out of him. Valuable insight as to what is going on and it broke my heart.  He is seriously homesick for his old school.  Worse than I had previously thought.  His hyper focus is on that and well, if you live with autism in your house you know that focus does not shift easily.  

And because he is super sad about that, he's doing his usual "Let me list every meltdown, every little bad thing that has ever happened to me, every time I have ever been wronged or have done wrong." thing. Which is just depression wrapped in anxiety and marinated in sadness.  Oh man, that's a vicious cycle.  This is not going to get solved in a simple matter. Nothing with autism is ever that easy.

But by far the best reason to still go out and do big things like going to see that show on a weekend is it is one giant distraction for all of us. The weekends with no structure or plans in them can be way hard on a child with autism.  This gave us an all day activity and anytime he brought up "No school!", it was pretty easy to redirect him.  The day went by quickly, whereas staying at home the day would have been no less than ten thousand hours long.

Plus, because of his communication issues I am never truly sure of what he is absorbing. So we like to give him a chance to experience as much as he can. Maybe giving him a happy memory to think about when he's feeling sad at school that can help get him out of a funk.

You know, one of the reasons I started this blog is because a lot of my friends and family were commenting on my Facebook status updates about the Kiddo and his love of looking for excuse to NOT go to school back when he first started at the school he now misses.  If you know us, who can forget his requests of "Turn off school!" and "No Monday. Put away Monday."  Or his personal best of refusing to go to school because he was in fact a penguin and penguins do not go to school. (Hard to argue with that logic.)

And yet, I still made him go. And yet, he eventually got over his hatred of the new place and grew to love it.  So I know he has the potential to do the same here at this middle school if he just gives it a chance and if the school gives him one too.

Just like any good production, it's going to take some rehearsals, patience, and maybe some jazz hands here and there. ;-) 

Friday, September 23, 2016

The other side of this.

We had to white knuckle this last week. Some days were good and some were crap and some were "YEAH BABY!!!"  It was a fine example of life with autism in general.  Put out one small fire only to turn around and see two more that just lit up behind you.

My husband and I are in constant state of "Distract and Deflect" with the Kiddo.  We will do anything to keep him mind busy.  Which leaves us both completely wiped out by the end of the day and usually going to bed not far behind the Kiddo most nights.

Speaking of bed, Kiddo has taken to waking up extra uber early again.  I had long since made my peace that my child would never sleep past 6 AM but I found myself wistfully looking back to those days as sleeping in. 4:45 AM wake ups have become the norm.  He's also having a very hard time turning off his brain for the night.  Up for hours in his room.  I guess the only good thing is he does stay in his room but he's as about as quiet as having a bunch of frat boys riding elephants living next door to you.  If he's up, we're all up.

His doctor has tweaked his medications again and we've seen some success with it at school. To the point where the teacher wrote me an email that things seem to be a step in the right direction last week and we felt like "Yeah, we're getting somewhere.". Of course this was promptly followed by some days of not so great behavior due to his anxiety and we're back at square one again.

But we do have some good stuff going on.  Daddy Fry decided that the Kiddo needed a giant trampoline and Boy, was he right about that! (Look at that babe! I'm admitting you were right in print!)  Since we had to take down the old swing set that was falling apart, might as well set something else up over the dead grass. ;-)

 I suspect he'll still be jumping on it even in a snow storm. 

And while we managed to get through the week at school with no phone calls, I know we are far from being over this.  We still have a whole school year ahead of us. Every day of holding our breath till he comes home, that's gonna wear on a gal.  It did feel good to exhale when he came home today with a note that the whole school day was great.  The days though with the bad notes just feel like a gut punch.

WTF Wednesday returned with a vengeance though.  How do you go from two perfect days to all the old behaviors popping up AGAIN?? I'm hoping it was a one off. I'm hoping it was just his usual wanting to rush through the day to get to the thing he wanted. (Which is music therapy after school which he hasn't had in a long time due to scheduling problems) But I have really no idea and of course this was a day that the BCBA wasn't in the room to observe him for his FBA.  Ugh!

Thursday started strong but ended rough. So much anxiety over school.  So many attention seeking behaviors that we can't react to because that just feeds into it.  There's a point where I had to just keep biting my lips to keep myself calm from my own panic attack.

It's Friday morning and I just sent him off. He is buzzing with enough nervous energy to power a small city.  I hate that he is feeling like this over school.  Last night I had an emotional conversation with another autism mom who wisely observed how the Kiddo is probably still coming to terms with not being at his old grammar school.  How he is "homesick" in a way for it and he is still slowly processing these feelings of loss. She's right.  She usually is on these things.  Doesn't solve the problem but it certainly puts it in perspective for me.

Anxiety over your kid's anxiety.  How's that for irony?

I just want to get over this hump. I just want this stuff behind us. I want to get to that place where I can have these moments as distant memories where I can think "Well thank god we got past that."  I don't need anything else. I just want to get to the other side of this.  I know it can be so much better. 

Saturday, September 17, 2016

The List

I was sitting there on a Friday night looking at my last few blog posts and thinking "Geez, these last updates are kind of dark.  Kind of a bummer.  Sure hope I can get back on track with writing something funny again.  Something that might make another tired autism parent chuckle.  Spread a little joy into the #TeamQuirky world."

And with that the good Lord above looked down upon Mama Fry and said "Gurl, don't worry. I got you." and sent the following email exchange to the message box on the Autism with a side of fries Facebook page.

And it was good.

The name and phone number of this person has been blurred out to protect him from his own stupidity. 

Now this is a typical message that I get pretty much every other day. I wish I was making that up.  I wish I could say this type of sales pitch that preys upon parents who are grief stricken and confused is the rarity.  Sadly it is not and before you all jump on me for "Hey, you should give it a shot you don't know." I clicked on this guy's Facebook profile and saw he was a sales rep for company that is well known for it's high pressure sales tactics selling bullshit snake oil.   Hence my "Move it along, Buddy." reply. I don't want my time wasted and I'm gonna do this guy a solid by not wasting his.  Which is kind of nice of me because I'm sure he just copy and pasted this to a ton of pages.

Apparently being direct wasn't jiving with our fine friend.  He had a quota to fill, I mean, a point to make.

Heaping on guilt. Wow, you must make A LOT of sales. 

That's right folks!  I don't care about the cause or the children!!!  It's not like I have been tearing my hair out advocating for my own child this past week at school or....oh wait.... Well I certainly didn't work for nearly nine years with autistic and special needs children or anything...wait a minute...I did.  Oh I know, it's not like have been blogging for four years on this topic and created a global community so 70 thousand people can feel less alone or anything...Hold up.  Call me Britney cause Opps I did it again because I have!  Hey, I know. It's not like I have raised funds for Autism New Jersey by partnering with Spectrum Designs Foundation (A group that employs autistic teens and adults.) on a line of t shirts.  Well dang nabbit, looks like I did that too.   Hmmmm, it almost looks like I care.  Better make sure I'm really clear about the fact that I don't.

You hear that Temple Grandin?  I made THE LIST!  Are you on it? No? HA! 

I suspect the name of "the list" is "People who won't help me make money by exploiting their kids."  If so, I'm happy to be on it.

This is the point of the exchange where I realized that I have met this guy before or should I say, his type.  Several times over in fact.  Mostly my college and 20's when I was single.  He'd buy you a single four dollar warm beer and thought he OWNED you for the night.  God forbid you were direct and told him you were not interested, you were either accused of being a prude, a bitch, a slut or a combo of all three. I didn't put up with that crap then and you better bet your sweet ass I sure in HELL won't now especially when my child is involved in the equation. I bet this guy gets LOTS of dates and by that I mean, he is FOREVER ALONE.

I, of course, had to get the last word in.  If he was going to think I was a bitch, I best prove it. With a smiley emoji because I am thoughtful as feck.

"But Mama Fry!  He believes is his product! You shouldn't publicly shame him so!"

But you see I didn't because it would have been SOOOOOOO easy for me not to blur out his name or his phone number.  I don't know if you noticed but the folks that follow this blog, I both love and fear them.  They are like the mafia.  You send one of theirs to the hospital, they'll send you to the morgue.  I have a feeling that dude's voice mailbox would have filled up quickly and NOT with sales orders.

You see buddy, I got a list too and you and the snake oil you sell are on it.

Have a nice day! :-)

Sunday, September 11, 2016

Where do we go from here?

"Where do we go now?
Where do we go? 
Oh Sweet Child O' Mine." 
Guns N' Roses

Let me get the important stuff out of the way.  I want to thank you all for your comments and emails.  So many of you have been where we are now. Or you're still there in the midst of it too and yet you took the time to reach out and share your words of encouragement. Hearing "Me too." really does help.

But it also makes me sad.  On one post alone on this blog's Facebook page there were close to 700 comments.  My inbox for that page and my email account got slammed.  It became overwhelming to me.  I had to stop myself reading at one point because I found myself crying for all of us and Fries, I am in danger of dehydrating myself with the amount of snot bubble ugly crying I've been doing lately. Why is this stuff just so damn hard? For all of us.

This needs to be said.  School is not my enemy.  Because think about it.  Why on earth would I want to send my only child to an enemy? Right? That would be insane on my part and not in the good fun way. Both my husband and I want to fix this.

What I want is for things to get a chance to work.  By the end of the day on Friday, I did feel like we possibly had a plan in place but the only way we'll know if we are on the right track is try it out.  The most important step being getting him to school.  Cause let's face it.  You can have all the picture schedules, Behavior plans, and reinforcers in the world.  Doesn't mean squat if your kid isn't there.

So where do we go from here?  Well this weekend is all about the Kiddo.  We have done a lot of activities he likes and ones that also give him a lot of sensory input.  I'm going over the schedule with the Kiddo for the week.  We are planning things out for miles. Down to the songs we will listen to after he comes home from school each day.  Anything to give him comfort, keep him calm and most importantly, keep us calm.  Cause have you noticed that anxiety is a bit contagious?

Our school district has a brand new BCBA (Board Certified Behavior Analyst) and I think this guy being brand spanking new is going to work in our favor.  Fresh pair of eyes and ears on it all.  I've also been in touch with the Kiddo's old teacher and caseworker.  The caseworker is also going to come in and observe him.  Kiddo's medications have been changed again but of course, that takes at least six weeks before we see anything there.   We're even working on getting the BCBA to come over one morning before school so he can see the Kiddo and anxiety build up in action.  I'm more than willing to make sure I'm properly dressed in the morning and offer that guy a cup of a coffee and an Eggo waffle while he's here.  If it helps figure out what's going on, let's do it!

So that's where we are at?  I feel like we're getting tossed around in a mosh pit and I'm much too old for that stuff anymore.  I'm just sitting here hoping this sweet child o' mine gets on the bus each school day next week and starts letting the staff around him help him.  I swear Kiddo, we're all on your side.

He was happy the first day to go.  Let's hope we don't have another Axl Rose in 90's meltdown this week.  

Friday, September 9, 2016

Come Monday

"Come Monday It'll be all right,
Come Monday I'll be holding you tight.
I spent four lonely days in a brown L.A. haze
And I just want you back by my side."

Jimmy Buffet 

Stuff is not good at French Fry Inc.  School has been dicey and today we reached a brand new level of suckatude when the Kiddo's anxiety spiked so bad this morning that I had to make the call not to send him to school.  I have never seen him so upset.  He was able to verbalize that he felt sad but what I also saw in his eyes was pure fear.  I'm all about powering through stuff but there's a limit to what I will make my Kiddo and myself power through.

I won't lie. I am very frightened to what is going on at school.  I know this is a major transition and these things take time for an autistic kid to adjust. I have spent more time on the phone either emailing, texting, or calling folks about this.  My smartphone literally groans every time I go to pick it up.

We're making some medication changes but even those take time to kick in. Same thing with getting an FBA done.  Even once the recommendations are made, that the steps will take some time before we start seeing their effects on the Kiddo and his behavior.

Kiddo is now very calm.  No, relieved is a better word that he is home.  He has asked to go to school on Monday and seems ready to go that day. I really hope so.  I keep asking for folks to give my Kiddo a chance but that's hard to do if he's not there.  So I am really hoping that come Monday he will be willing to go.

I feel like we are starting over with autism. I feel like we are back at square one when the word "autism" was first brought up.  And I hate it. I have cried so many tears and lost so much sleep in the past few weeks that the bags under my eyes are now bigger than my boobs and that's saying something. Cause I got a rack.

I feel like I lost him and I am desperate to get him back.  Just hang on Kiddo.  I just want you there by my side come Monday.

Hey Kiddo, if you're gonna get into watching blenders on YouTube, could you look up a good recipe for a Margarita for me?  Take me to Margaritaville?