Stick to the Script

I had something of an epiphany today concerning Bear's speech patterns. He often likes to ask questions we've already established the answer to such as:

Q:What does Hi Ming do when I'm not there?
A: He takes care of me so I'm not lonely.

Q: Who took the "W" off Michael's computer?
A: Elmo did

Q: What happens if I don't listen?
A: I'd be very sad and disappointed.

And so on, and so on. There are dozens of questions, all with a prescribed, "correct" answer. Dependent on the day (or the hour of a particularly trying day) or mood, we either go along happily or get frustrated and say something like, "You know the answer to these questions!"

But after watching a video from the amazingly fantastic Special Books by Special Kids, I came to my epiphany. (Click here for the video!) Luke is simply trying to engage me in communicating. He's looking for me to play my part in his scripted conversation - which is comforting, safe, and predictable. He wants me to be a part of his world and be an active participant in this. I should be thrilled and excited! Kids with an ASD diagnosis want the repetition because it's safe and comforting, and why shouldn't he want his mama to be a part of something that is safe and comforting? Here's a reasons why he might break out his trusty bag of questions:

• Inability or difficulty adequately communicating ideas via oral speech.
• Difficulty knowing how to initiate or maintain a conversation.
• Lack of other strategies for gaining attention in a positive way.
• Need for information.
• Need for reassurance.
• Need to escape a situation that is boring or unpleasant.
• Need to avoid transitioning to a new situation.
• Desire to be social.
• Need to be in control of the situation and/or attempt to keep the social interaction within his/her level of understanding.
• Fascination with predictable answers.
• Desire to demonstrate knowledge or competency by content of questions.

These ALL sound like Bear! It may seem like a "duh" moment - like, how could I as an ASD mom not even think this way up until now? 

Survivor Guilt

This week(ish) saw the loss of three creative souls. All to cancer. Any time I see someone has succumbed to cancer I always pause. Always. And I think:

Why am I still here?

Why is an insanely talented musician gone who contributed so much to so many different genres and touched so many people gone?

Why is a profoundly talented actor who brought life to a complicated literary character in a way that truly illustrated the complexities of said character gone? (Not to mention the countless other roles he played brilliantly.)

Why is a kind man who was a true partner to his talented wife gone?

And why am I still here?

Earlier in 2015 I lost what I called my "cancer mentor". She was my office mate while I was going through chemo. She had beaten cancer twice (TWICE) and was funny and spunky and so damn positive. She commiserated about losing my sense of taste and all the other screwy side effects. She kept germy kids away from me. She was so protective of me and made sure as soon as I looked kind of tired to send me home. She was BEYOND excited when Lucas was born and I think she looked at him (as I did) as triumph over the disease. I mean, if she couldn't beat it, how on earth can I if it comes back?

After cancer, almost any time I'd go for a run or go to a kickboxing class I'd see cancer as an opponent - and one I'd easily run away from or knock out cold. These days, it feels like it lurks in corners almost just out of sight, but letting me know it's still not gone from this world. (I kind of imagine it looking like either Orson Welles in "The Third Man" or the green cloud of death from "The Ten Commandments.")


It makes me worry that some day it will sneak up on me and take me out despite my best attempts at trying to stay healthy. It won't care that I have a son who needs his mama. It won't care that I probably am not done with my career. It won't care that I still have tons of music to make. It won't care that I try every day to do my best.

This is why sometimes I feel like I'm on borrowed time. And that hurts. It makes me try to squeeze too much out of things sometimes. It makes me feel like there's a checklist of things I'm trying to get done or accomplish to be a "good mom" or worthy of having been in the top of my class.

I'm curious as to how similar survivor's guilt is for someone who survived an accident or natural disaster as for someone who survived a deadly disease. And today I wonder,

Why am I still here?

This...Oh, So, Much, This.

I'm sharing this from a fellow blogger (read: way better blogger than me with awesome links and a non-template page) who nailed what a meltdown feels like and all the stages of it.

http://atypicalfamilia.com/after-my-kid-has-a-meltdown/