Sunday, July 7, 2013

Family Adventures and how Autism ruins them

You know, most of the time I try and be positive, even upbeat about living the autism life. But sometimes even my incessant cheeriness is dulled by how our lives are dictated by crap that autism throws at us.  And those days are the days I say AUTISM SUCKS and I don't care who doesn't like it.

I did not say "The Boy sucks" and I never ever would. But this weekend the fact that autism and the anxiety it creates abruptly cut an  impromptu family adventure very short frustrates me.

The Mister surprised us on Saturday and said- get to the car- we are going on an adventure! This is unusual for him to begin with, so we all did as he said. Everyone piled in the car laughing, excited to get out of the house.
Look how happy we all are!

An hour car ride filled with singing, laughter and playing the alphabet game, everything was fine and dandy. We decided to stop at Cabela's- just for the hell of it. Things continued on, light, fun, and silly with The Boy amazed at all the displays- and then all of a sudden I saw the signs-  the anxious look in The Boy's eyes, the jerky body movements, the heavy breathing- here comes the meltdown.  Time to go, and go get something to eat I tell The Mister.  Teenzilla rolled her eyes and mumbled something under her breath which I chose to ignore.

Blown away at Cabela's
We got back to the car and talked about what else we were going to do. The Boy asked if we were going to go home now. I said- well- we were kind of planning on some more adventuring after getting some lunch. The panic really set in at that point and he cried- "I JUST WANT TO GO HOME!"  Ok, ok- let's get some food.

Over lunch we talked about taking a trip to Ikea, or just aimlessly driving somewhere and stopping when we saw something cool. As I watched The Boy barely touch his chicken nuggets, I knew our adventure was done for the day.

Teenzilla was pissed. Pissed at her brother, pissed at me, and refusing to be consoled. That finally made me snap at her, and tell her I have to miss out on things all the time, she just needs to get over it. Of course, I immediately regretted this- as tears welled up in her eyes, and she yelled back "I AM ALWAYS DISAPPOINTED! HE always ruins everything!"  *sigh* Yet another family outing derailed by Autism. Teenzilla taking a back seat again to her brothers sensory needs and anxiety issues. I know it sucks. I hate it too.

As soon as we got home, I told her we were getting pizza and she should ask her BFF to come over to hang out.   She shrugged and went to her room. The Boy visibly relaxed as soon as we pulled in the driveway. The panicked look in his eyes, the tension in his whole body, it all went away. I knew we made the right decision- even if it was at the expense of the rest of the family having fun. I was frustrated and a little irritated too. Well- a lot irritated. I have to keep telling myself  "It's NOT his fault, it's NOT his fault." This wasn't a case of a child being a brat- this was sensory issues and autistic behaviors in overdrive. And despite his (and our) efforts, today just wasn't a day he could overcome them

Siblings get screwed sometimes when dealing with an autistic brother or sister.  Either they feel an overwhelming sense of responsibility, or they feel resentful, jealous and anger. I follow all the advice. I make time just for her. We do lunch and shopping dates, I let her friends all hang out here, we do movie nights- anything to make it all about HER, since so much of our world does revolve around The Boy. From what we watch on TV, what we eat for dinner, and where we get to go-  it can be difficult to balance.  And The Boy is high functioning, I can't imagine how much more tricky it becomes when you have a child that has moderate to severe autism that requires 150% of your time and attention, PLUS any other children that need that attention too. I feel bad even complaining.   But sometimes you just have to let it out, right? Tomorrow is another day.  Just keep swimming.

My loves ♥