Not the role I auditioned for

Back in the day during my brief acting ‘career’ I was fortunate to land most of the roles I wanted. Whether it was a small role in the first play I tried out for or a leading turn in one of my last, I usually fell into what I hoped for. Of course it didn’t hurt that sometimes there weren’t enough guys trying out for the roles, but that doesn’t make this story sound so sexy.

So I figured fatherhood would be similar to some of these plays. I’d try out for the role of ‘Dad,’ I’d get the part, and I would carry out the scenes. Well somewhere along the way someone changed the script on me and I fear I’ll never learn the lines.

Just when I think I’m starting to get a handle on being the ‘autistic dad’ I get thrown some serious curveballs. It only seems like days ago that my wife wrote a great post about how we were turning the corner and the veil of autism seemed to be lifting. Then came the last few days. How can I describe them succinctly for you? Well there were lots of tantrums, breakdowns, and hair pulling. Josiah had a rough weekend too.

I think I had a good two nervous breakdowns on Saturday alone. It’s funny how it just takes a few things going wrong all at once and suddenly the world comes crashing back down to reality. In between some regressions/spaciness/whatever-you-want-to-call-it from my son, I had some opportunities to see just how I’m falling short in pretty much everything in my life these days.

First off I made the mistake of trying to assemble a wagon by myself. My wife and I had agreed that I would go to Toys ‘R Us, purchase a wagon for our son, and spend the extra $10 for them to assemble it. Well, the clerk there assured me that pretty much any idiot could assemble this thing and not to waste my extra money for him to do it for me. So I took his advice, and about 90 minutes later after starting it, I had indeed put the wagon together, and nearly destroyed myself in the process. I got so pissed at that stupid wagon…nothing seemed to fit the way it was supposed to and I kept hammering my $@!%#!# thumb. I wanted to just chuck that wagon down the driveway and utter some unmentionables. But since there were plenty of neighbors out, I decided to go inside and keep my cool. So I go inside to find my son still up when he was supposed to be napping…he was cranky and as is his choice lately, he was not eating the expensive organic/natural food we buy for him.

Eventually I calmed down somehow and in the end our son did nap, he ate at least one chicken nugget at some point, and the wagon didn’t fall apart the first time we used it. Later that day we went to the park which was also fairly disastrous. Our son cried most of the time there and all I got to do was watch all the other parents with their normal children having a blast as we packed it up to go home (in the wagon though!).

Then I got to mow the lawn and see what a crappy ‘green thumb’ I am. Let’s the put the mower back in the garage…oh great I can see the car is leaking something. Well I can bring it in on Monday morning on the way to our son’s eye doctor appointment….oh yeah, he’ll have to wear his back-up pair there as the good ones are broken and will take a few weeks to get fixed.

Seriously, there are some days where I just wonder how much more I can take. Just when I start seeing a light at the end of the tunnel, we end up taking several steps back. Every day my heart breaks more and I just feel like someone is continually punching me in the gut.

Like I said earlier, I thought I had auditioned for and won the part of the dad who got to do all the things I dreamed of doing some day with my child. I couldn’t wait to throw a ball together, chase each other around the park, have all sorts of adventures together. For the most part I’ve yet to experience any of those things. But I get to see every other family on my block living that dream. Oh, there’s the couple with the 2.5 kids we dreamed of having and they don’t have to deal with autism! Hey look over there…there’s the family having a barbecue with other families on the block! Guess our invite got lost in the mail. Perhaps because we’ve taken the mantle of being the weird family on the block now.

I don’t think anyone who doesn’t have a kid with special needs realizes how hard it is to see ‘normal’ families. Everywhere I turn whether it’s at the park, at church, or just looking out the friggin window I see people getting to do what I wish I could do. How did they get into this play I so badly wanted a part in and I’m shut out? Is it something I did or said? Did I show up late or unprepared to auditions? Does the director have some kind of vendetta against me? I would take the smallest role in this play if I could just have what they have. I’m not asking for much…I don’t expect this role to make me wealthy or famous. I just want to not have to sit by daily and watch my son suffer. Well, I suppose he doesn’t seem to be suffering too much. He often has a huge smile on his face and is pretty oblivious to his condition. But I’m the one who has to suffer and worry about what life will be like for him. How will we get all his toxins out? How the hell did he get that crap in him in the first place? Will he be able to go to school someday and make friends? The questions are limitless and they taunt me day and night. I feel like all these worries are being shouted at me like hecklers from the balcony of this theatre.

I do get to work on my acting skills all day long though. When the few friends I have left these days or people I come across ask me how I’m doing I summon those skills I learned in theatre and give my best smile and say something like, “Things are going great!” You may say I should just learn to be honest, but I learned pretty quickly when I got this part, that people don’t want to hear how you’re really doing. People love to believe that you’re some kind of strong person who’s going to set the world on fire and cure autism or something, when inside I die a slow painful death every day and am hurting more than I ever have in my life. My soul is screaming out for relief, but I just fake the smile and let the world pass me by.

Well, one thing I guess I can say is that this play I’ve managed to get myself into isn’t dull. Far from it. I was hoping to be cast in a lighthearted family comedy but it seems like I’ve unknowingly wandered onto the set of some kind of Greek tragedy.

Hopefully, someday I’ll look back at posts like this and laugh. Maybe then I’ll be cast in the role I thought I was going for. And I guess if this is where I’m meant to be, maybe I can shake some things up in the future and invest in a codpiece or some cool tights for this tragedy. At least I can look the part while doing this.

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