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? 

Saturday, September 3, 2016

Moving Forward

Toward the end of ESY (Extended School Year) aka "Summer School", we had a bit of a major setback with the Kiddo, his anxiety, and school. It was a real shock to our system because for five weeks stuff at school was great. We got some nice emails from the teacher about how he was handling the new school and adjusting to life at the middle school. Then our old enemy "Anxiety" showed up the last week and it all hit the muthaloving fan. Who the Hell invited that guy? Seriously, Anxiety, you can't sit with us.

I don't even care if you are wearing pink on a Wednesday.  

How it was handled there wasn't ideal. In fact, it sort of sucked. It was a recipe for a clusterfuck though. New people that did not know him and his previous work. Stuff that he used at his old school to help self regulate and calm was not available at this one. I think six weeks of not having his comfort items and all the newness took it's toll and the Kiddo went HAM with the attention seeking behaviors. The more I reflect on it, the more I know these behaviors were his only way to draw attention to himself for being so miserable and unhappy and unsure of everything. This is where the communication disorder in autism is a bit of a bitch.  Why say "Mom, I'm really upset at school." when throwing blocks across the classroom is in your wheelhouse?

So we have had since a flurry of emails, phone calls, and meetings since the big blow up. We're trying to get all the steps in place for him for when school starts up again. I'm not gonna lie. I am freaking out about it and wish I could go back in time and send him to his old elementary school where he was King of the joint. Everyone knew him and more importantly knew his triggers and how to redirect him.

Yesterday they had a "Welcome 6th graders" pizza party at the school.  It was for all the incoming students to come and get a tour of the place, mingle, and in general get a little more used to the place they are about to attend for the next couple of years.  No parents allowed.  I really wanted him to go.  I wanted the Kiddo to see his pals from his old school from the typical classes.  Even though he had been in the building all summer, it was going to be a whole lot different with way more students and staff in it.  I thought it was a good way to get an idea of what that would be like for him. This middle school would also have a lot more students that he hasn't met yet coming from other elementary schools.  I wanted them to get to know the Kiddo. See what a swell guy he is.

I was very, very, very wrong with this idea.

Even though he was scripting like a mofo, I still took him.  I still dropped him off to the caseworker that was going to shadow him.  I told her I would hang in the parking lot and it was a good thing I did.  Forty minutes my cell rang and I could hear the Kiddo hollering like a banshee as a staff member said "Yeah, we tried. Come get him."  And so I did, with my sunglasses on because I did not want them or him to see the tears in my eyes.

I don't know if it was too much for him or the fact that he knew it wasn't a real school day or the alignments of the planets or because I didn't perform a animal sacrifice.  Perhaps it was just because of autism, which is most likely the best explanation.

And like any good meltdown, he had to peseverate on it for hours.

And like any good autism parent, I kept reminding him that the activity was done. The event was over. "Moving forward!" On to the next thing.

But in my head, I am still obsessing over it. I am trying to figure out what went wrong and how to avoid it in the future. I am convincing myself that this school year is going to be awful.  That all the hard work that was put into the Kiddo all his years in elementary school are gone.  My stomach is in knots at the idea that the school will be calling me every day with another complaint about his behaviors.  They think the logical thing to do is to call me like I have some sort of magic secret solution to all this that I am keeping from them.  Trust me school, I'm not. This is where we both need to agree that we both don't always know what to do.  This is where you at the school just have to power through some of his shittier behaviors because at the end of the day, that's all we do here in this house when he has them when nothing else works.  Welcome to our world. It sucks sometimes.

I'm trying to remember to move forward.  I'm trying not to dwell in the much here.  I'm struggling here. Some problems can't be solved by ordering another side of fries. Some problems are only tackled by powering through and moving forward.  Like a bulldozer.

Middle school, be patient with my Kiddo.  There is a reason so many people love him.  He's freaking awesome.  Just move forward with him.