Sunday, December 30, 2018

The Show Must Go On.

"The Show Must Go On. 
The Show Must Go On. 
Inside my heart is breaking
My makeup may be flaking
But my smile, still stays on." 

Kiddo had his IEP the other day. I'll get right to the point. I didn't want to go. I didn't want to deal with it. I didn't want to prep for it. I didn't want to hear about goals or benchmarks. It's not that I don't care, it's just that I am so tired.

Couple with this with a yearly review from the state agency, "Perform Care". Which if you are a resident in New Jersey, you will speak to quite a lot under the guise of getting help and services for your kid but only if you are willing to be a giant pain the ass to follow through to get it.  "Perform Care. We barely care or perform." might as well be it's slogan.  I spend an hour on the phone with them to once again answer a slew of questions of what he can't do milestone wise and what damage he can do behavior wise.   I listen to an employee tell me all the stuff they can provide if only he was "more severe" or "less severe".  It seems if your child is middle of the road autistic like mine is, don't hold your breath that you'll get actually help.

Gee Kiddo, it seems you have the wrong kind of autism.  Who knew that would be a thing?

It's not just a physical tired that I am talking about here. I haven't had a full night of sleep since the doctor said "It's a boy!" at the Kiddo's birth. All parents walk around in a bit of fog, especially those of us in #TeamQuirky.  It's not fun but your body gets use to it.

What I am talking about and trying to come to terms with is how emotionally tired I am of all this.  I'll say it. Autism is tough task master and it often makes me it's bitch.  Kiddo is fourteen. He's been in school since the day after he turned three.  So we're talking a decade's worth of IEPs and special meetings with the team.  Plus the year and half before school with Early Intervention and all the service plan review business. At this rate we could wall paper our entire house ten times over with all the paperwork involved.

And I'm just done and the worst part is I know I can't be.  There is no end to this. Not till the day I die and even that I can't really do because, well, autism.  The show must go on. There is no understudy.

Also, to be perfectly honest, I am hitting a wall with Autism in general. Not just my Kiddo's special brand of it.  I know this is an issue of my own making.  Becoming a blogger that writes about one subject was eventually going to bite me in the arse.  I just had no idea how utterly steeped in autism I would become.  Seriously, I cannot escape the stuff.  The majority of my life even outside of my Kiddo is just autism related stuff.  Other families that I know, teachers and therapists that I have become friends with, sites that I follow, podcasts that I listen to, writers that I read, stuff on social media just has a crap ton of autism and puzzle pieces slapped all over it.

I have observed a common theme for most of what I see too.  Struggle. There is just so much hustling to make things work for our rapidly growing kids.  With this IEP in particular, the theme of rapidly growing was forefront.  Job training, independent life skills, improving social skills, and working on coping skills are all being thrown at us.  I mean, we're ready. I think. This is what my professional background is in.  I've been playing the part of "job coach" long before the Kiddo.  I know my lines.

But can I find it in me to sell the scene? Because I am struggling to get to that part of me that makes me believe that we can do this.  That he can do this.  That I can be both his duet partner or his background chorus girl.  Whatever he needs, I will try my best but I am so damn tired and so scared because the older he gets, the more I see how the world just seems to forget our kids grow up.

Because every day lately has felt like I am in a play that never ends. Even as I was getting dressed to go into the school because the dress code is not "pajama casual", it was really hard for me.  I caught myself thinking "Why can't we just be shitty parents and blow this off?" Of course, as soon as I thought it I realized how stupid it was.  Blowing this off won't make it go away. The audience have bought their tickets. The curtain is going up. "Places" will be called and you can bet your arse I will be in mine. (Back to the wall, middle of the table, face to the door to greet any sudden cameo appearances like special guest stars "Speech or Occupational Therapist")

But good gravy, this was the year I struggled to pull off this performance of "Involved and Active Parent".  It kind of freaks me out that I felt this way to but I am hoping that by acknowledging these feelings I can get over the hump of "meh" I have been feeling about autism as of late.

After all, there is still more story to tell.  On with the show!

"I'll top the bill
I'll overkill 
I have to find the will to carry on.
On with the show. 
The Show Must Go On." 

Thanks Kiddo. I've been feeling a bit Autism with a side of "meh" lately.  This helped.