Suiting Up for Battle

Wake up to pulling on my arm....roll over to look at the clock to confirm my dread...yup, it's 2:03am. That is the moment in which I first have to pull on my armor. This day is going to be a battle...Every day begins this way. I make Parker lay in his bed and don't let him get up. "It's nigh-night time. Not playtime. Pleeeeeeeeease go back to sleep or at least just lay with Mama." Response....laughter and then the screeches follow. I pray that Quinn doesn't wake up. That's all that I need is to try to get her back to bed. I hear her stirring and the eventual faint cry from her being woke up. I mean, I cant say that I would ever like to be brought out of dreamland by a high pitch screech. Who would? Is Tim even home from work yet? Nope.

I continue to try to lay in bed exhausted but my Mama-radar is going off knowing one or both of my children are awake. I can't shake it. I can't ignore it. I continue to lay in bed hoping that I will get a break and be able to get them back to sleep...then I can doze off until my alarm goes off at 4:20am for work. Nope....my alarm is now going off. Ive been fighting my first battle of the day and I haven't even dragged my rear out of bed. This is going to be a long day...

I blast the air conditioning in the car as I drive into work to make it in at 6:00am. I log in, read some emails which are usually about how I need to be doing more reports, how I don't have my worklog showing 100% of my day accounted for, how my FMLA still isnt being approved because they need to know "exact frequency and duration in hours in which episodes happen" (errr what?!), what career goals I have and how I am supposed to be more engaged at my work...I tune out and listen to music on my headphones as I go on cyborg mode and process, process, process. I stalk the clock to watch it flip to 2:00pm and I have to fly home to get there in time so Tim can leave for work. I call him so I can get at least a few minutes to talk to him in a day. Today while on the phone he had to change Parker's diaper and he was screaming so he said he would call me back. I blasted my music. I saw Tim calling and I couldnt answer. I knew what I would be walking into and I wanted to savor these few minutes in the car. Once again...suiting up my armor for battle when I walk in the door.

I get home, give Tim a kiss goodbye and so my second job begins...and never really ends actually. Parker has sensory issues that we are working on but right now he refuses to let himself go #2. Yup....without the glorious details, let's just say it's terrible and trying to change a strong four yr old boy....battle in and of itself. And when you're changing 17 diapers a day....kicking, screaming, squirming, crying, trying to get up and away from you....battle.

I get dinner going, feed Quinn between stirring dinner, get her set and get Parker's food out. If he eats, it's a battle won. I'm finally on the scoreboard for one point at least. Then we have some playtime and then tubby time.  Coordinating Quinn's scrubbin and Parker's scrubbin, forcing Parker to sit in the tub to help his sore little bum, me being splashed, he's thrashing, screaming...I close my eyes and hold him to make him stay sitting to try to help his little bum. I get him out and get jammies on while he's still screaming. It's now been over an hour after I gave him his "night candy" (his medicine to get him to fall asleep) and he's still awake. I make Quinn's bottle and give it to her and she drifts off to sleep. It's 10:00 and I think he's falling asleep. 10:15...he's out. I then drag myself upstairs, get in a tub and fall onto the bed and I'm out. The battles for the evening are done. I hope to have a four hour break until he wakes up....I hope.

I write this as a snapshot of my life every day. I don't write this for people to give pity or to talk me up even. I write it as a way to let people know what my life actually is like. My last post was about making the invisible, visible. This is another way of doing so. I also write this as a way to express myself when I feel like I don't have a voice. I am a stubborn person and I don't really tell my story too much because I never want pity. It's a revolting word that I don't want to be associated with. I am fighting from the moment I get to go to bed til the moment I am woken up. All I'm asking for is just a point on the scoreboard and not to be judged. Not necessarily a win, but a point none the less. My little battles...that I hope to get a few points on the board for the day. That for me is a win.


Parker has to sleep with shoes on so in this picture, he put on my boot slippers for bed. <3

Here he found Quinn's bink and is all nestled in with his "guys" (his favorite stuffed animals) to sleep with. He also snuggles in with his books just like he would his "guys." What a beautiful concept, right? Seeking comfort through his books in order to be calm enough to fall asleep... <3 

Making the Invisible...Visible.

How many times have you heard something about another family and reacted with "I had no idea that was going on?" Divorces, conflicts, deaths, challenges...there is so much about a family dynamic that can be invisible to others. Even if you think you are close with the family, you can still have something come up which made you give the "I had no idea that was going on" reaction. I think this is something that families in the autism community face all the time. We all go about our daily lives, what is expected from us in our communities, our workplace...all without people really knowing what our lives are like with our families.We seem invisible to what we really do every evening....every night....every morning....every waking moment outside our homes.

On Sunday, Tim and I saw the play Autistic License. It was written by the very talented Stacey Dinner-Levin about her life with her son Geordy. The lights in the theater went completely dark to signal the beginning of the show. The intro music began and then stopped. Suddenly you hear BURSTS of laughter from the pitch black stage. Then you hear "It's 2:00 in the morning!! GO TO SLEEP!!!" You know the cheesy saying from Jeremy Maguire "You had me at hello"? Well, Autistic License had Tim and I at "GO TO SLEEP!!!"

The play made me laugh as well as made me cry. At the intermission, Tim was just blown away at how close their story was to ours. Tim said to me, "Carlee, it's just like Parker is on stage and this story is about him. It's his eccentric little traits, random phrases, his body language...everything. Carlee, it's our story." I was still teary from where the play ended for the intermission anyways and when he said that, I just teared more, laughed and said "By the way others in the audience are wiping tears away from their faces, I think it's all of our stories Tim."

Then as if the entire play couldn't get any better, it did by the discussion that was held after the performance with the cast. Tim (being the very shy and timid person he is) spoke up and spoke to a woman in the audience who asked the question on when to show the play to parents who were just told of their child's autism. I saw his hand go up and I was just floored. He opened up and said how we learned of Parker's autism two years ago and how he thought every parent should see this play.

So many people spoke up and said how it was like it was their story too and how wonderful it was to see it outside of their family dynamic. While people were speaking up, they were crying talking about their lives with autism and how touched they were seeing it outside of themselves. I have never been to a place with complete strangers and have never felt so comfortable. I just sat back listening to people talk to the cast thinking how invisible our challenges are to others but here...with complete strangers...with this play....everything was visible. We all knew each others feelings because most of us have experienced them for ourselves. We watched ourselves on stage go through the diagnosis, we watched ourselves go through the hard realities of being a parent to our autistic child, we saw how terrifying and joyful our lives really are...at most times both of those feelings just moments apart....everything. Our lives were visible and brought to the stage. It was a great birthday present and of course....a great, MUCH needed and overdue date with my love.

 If you want more information about the play or would like to purchase the DVD, visit. www.autisticlicenseplay.com.