Saturday, March 24, 2018

When we crack

I can't say this life gets harder but it certainly hasn't gotten any easier.  Every age and phase brings it's own set of issues and complications that we somehow have to make work for him and for us.  I wish I could say I  handle this life with grace but sadly often I fail. Especially when new behaviors pop up.

We don't even realize how good we had it until we are in one of those brand new phases and I'm looking wistfully back at them. Thinking about them like they were the love that got away while humming Cinderella's "Don't Know What Ya Got Till It's Gone."

 Power ballad time! Get your lighters up. You see kids, in olden days we didn't have cell phones to hold up in concerts and were forced to use cigarette lighters. Which we held by our very highly teased hair sprayed to the gods heads and it's really a wonder we didn't all die in a great big ball of fire at a concert.  

But I digress...

The thing is, these behaviors and challenges, they can grind a gal down. Seriously, this autism stuff can be really, really fecking hard.  Since it doesn't really ever let up, how do we keep going?  I'm not trying to be deep by asking a rhetorical question here. (Honestly, this is a blogger that frequently quotes hair bands and drag queens. How deep can I be?)  I just don't know the answer and it worries me that when I think we have a steady grove going that we can manage, it goes right out the window.  Probably following something that the Kiddo threw out before it.

What are we suppose to do when we crack...

The logical go to is to take a break but please someone explain to me how I can do this. We have no sitters. No respite still from the state and I don't see that changing anytime soon unless a whole lot of people either move out of the state or die.  We have family that can help from time to time but they also have their own families and their own lives and we can't always expect them to help out.  Plus when things with the Kiddo are rough, I really don't want to anyone else having to deal with it.  I know. I know.  That's my own issue but I just don't feel right leaving him with someone when I know it's one of those "because Autism" days.

 I also feel so incredibly guilty being frequently burnt out by this all that I don't even want to admit it that I am.  This is why I often don't even bother asking for breaks. I literally don't feel like I deserve them.  I feel by asking permission to take one, I am failing him.

And look what I just wrote!  "Asking permission". For a freaking break. That's insane. Why do I feel like I even have to ask. There are plenty of people that just know they need one and take it. Who am I asking for permission?  I guess myself more than anything.

And another thing, (Yeah, I need to rant a bit on this one.) I will post this and many will say "Screw anyone that complains.  They don't get it.  They must not be parents." While I will agree with this to a point, I also know there is a good chance an autistic adult will read this and take it completely in the wrong way.  They will think I am talking about them.  They will think I don't love my Kiddo. They will take it that I am selfish.  They will tell me to "listen to autistic people", which I am down to do but I've been blogging for six years now and not one of them has told me what to do when I feel like I'm going to crack. Not one of them has offered advice on how to regroup.  I keep listening but when it comes to the topic of parental burnout, not much is said. By anyone of any neurology.   We just get crapped on to do better but not how.

Oh wait, sometimes I've been told it must be something I am doing to set off my Kiddo.  Now look, I totally jam with that whole "behavior is communication" thing.  I am just really tired of being told online at every single turn it must be something I've done.  Trust me, I am trying.  Constantly.  I accept a lot of changes in my life because of autism. Multiple times a day. If I am totally at fault for everything that happens here, feel free to take him off my hands for a couple of days.  Cause I am running out of ideas. 

Now pardon me while I go off to hide in the bathroom to play Candy Crush while listening to 80's hair band power ballads.   Right now, that's my go to for when I feel like I'm going to crack.  Maybe you could share what's worked for you.

Sometimes the dog pitches in and keeps him busy for me.  

Monday, March 5, 2018

Token Boards

We are having some homework drama. He totally can do it. He's just choosing not to and I can't tell if this is an Autism problem or a Teenager problem. More than likely, it's a hellish combo of the two. Ain't I lucky? #Blessed

Something has happened in the last few weeks where the Kiddo wants NOTHING to do with homework and I cannot for the life of me figure out why. This is a child that up to a few weeks ago would do it as soon as he got home from school. (Which as a former homework procrastinator myself, I did not understand how he could be related to me.) We've now hit an area of not just not wanting to do it but added gobs of behaviors that he sprinkles all over the experience. Crying, yelling, screaming and grabbing at me the entire time and for a good half hour after the actual work is done. Good gravy!

Clearly something needs to be done and I brought up to the teacher. She wasn't by any means giving him a lot or anything that was beyond what he could do. That's one of the most challenging parts of this. He's totally capable of it. A few weeks ago he would actually say things like "YAY! MATH!" when pulling out his worksheet. (Again, I almost question if I was given the right baby in the hospital.) His only struggle was the handwriting part but with a few prompts not to rush and take his time, the whole thing would be done pretty quickly and life at the House of Fry would continue right on schedule.
She decided to give him him some super simple homework. Stuff and concepts he's long mastered. She didn't want to get him in the habit of "Throw fit, then no work." which I agree with completely. If it was easy, maybe he would just mellow out and get into the groove again. So far it had been working. I was letting her know that there was less drama and he was just getting it done. She started sending home more challenging work but work he could do none the less and BOOM! It came to a Mac Daddy header last week over four freaking Math questions on a single worksheet. A clusterfuck of a meltdown and all aimed at me. FUN!

So, back to the teacher with a "HELP ME! I cannot be drinking by 3:30 PM every day or the neighbors are gonna talk." email and this was her reply.

"Have you tried a token board?"

Oh sweet Mother of Mercy.
I can't even believe I'm reading these words again but here we are. My Kiddo is 13. You want to talk about been there, done that, and threw the freaking token board out the window because DUDE, we have done that and then some by now. So let me tell you at why with where we are with autism and this journey and all that warm and fuzzy yadda yadda yadda B.S. why this isn't gonna do squat.

Come sit down. Let me break this down like Queen Bey.

Here's a math equation for it. Kiddo's inability to be focused on a long term goal PLUS having next to nothing that actually motivates him because even "Window Fries" don't have the same value as they used to when he solely existed on them as toddler EQUALS The Kiddo giving ZERO FUCKS about a token board. He just doesn't care. Period.

Look, I get that token boards/reward earning works great for some kids but there gets to be a point where this classic move just doesn't cut it anymore. Especially after years of various behavioral approaches being done on the lad. He knows your tricks and he doesn't care how hard you worked on your laminate Velcro tokens that you made when you weren't getting paid over a weekend. I get it. Teachers and therapists work so hard with our kids and I am so grateful that they do because they get paid a shit wage and work all the freaking hours of the day. But WHHHHHHY on God's green earth is this the only go to ya'll got?

I kind of wish teachers would just say "Well, shit, I don't know what to do either if that doesn't work." Let's all just be in that feeling together. It's okay. Sit right next to me. I'll share my fries with you too. Seriously. I'm not saying I know more than you. Not in the slightest. I have ZERO clues just like Kiddo has ZERO fucks about those damn tokens and a timer. That's why I'm emailing you all the time crying for help.

And at this rate, I have to be real about his future. Part of me wants to just say "Okay, we're just not doing this homework stuff anymore." and insist it be added to his IEP. The other part of me really likes this teacher and she's figured out ways that work with him before. We email some more back and forth and I think we might have something. I explained why the token board idea doesn't jive here and that maybe we could focus more on his typing skills since it's when he actually has to write the answers he loses his shit. We have all the products that Apple makes and plenty of WiFi. (I mean clearly it's a strong signal as I'm emailing the teacher all the freaking time.) We're moving on to stuff he can email to her and I'm hoping like Hell this might be the thing that works.

Cause much like the Kiddo, I too give ZERO fucks about a token board and I'd rather focus our collective energy to something that might prepare him more for the future that is rapidly approaching.

Fingers crossed! Let's hope this works.