how we write the story

i want to trade mine in for a new one.

yes i'm talking about my daughter.

today, i just want a neuro-typical 10 year old. i don't want to have to have to spend a hour and then have mike spend an hour talking out how to not say to some one, "is your dog about to die?" and then deal with all the dis-ease that comes with that. her anger at having to be told what is socially correct, her anger at not knowing, her anger at me for telling her that- for disrupting her perfectly constructed day of good feelings. she hates negative feelings- when they come, she is like someone teetering on the edge- and if pushed over - she'll ride the downward spiral into the dark place, a place of facing the things she likes to not think about, like having a nonverbal learning disorder, and having a hard time understanding the subtleties of language and expression.

she fell hard. and i sat on the bed while she sat in the rocking chair yelling,
"i hate my brain! i want a new one! fix it- you're a doctor! fix my brain- i need a surgeont" it probably wasn't the right time to correct her and say "it's surgeon not surgeont", but i couldn't help it.

and when i told her that she had a good brain- it became, " i hate being ten- ten is a stupid age- why did i ever have to turn ten!" it's always blame- something else is responsible for her feelings. and as i'm listening to her, i'm having a little bit of an out-of-body experience. part of me wants to laugh as the level of drama and part of me was so overly annoyed because i wanted us all to go to the summer festival in our neighborhood, and part of me was annoyed at the same thing she was dealing with. i was so angry at her brain too. so mad that things don't come naturally to her, that i have to teach her what to say, and then deal with the fall out of that.

after my hour of trying - i realized i was done and getting no where fast- so i took the boys to the festival and mike and zoe met us after another hour of her crying through her bad place. at that point, i was hot and bothered- cranky but trying.

at the festival her music school had a stage and her teacher asked if she wanted to play-

"oh dear God" i thought- not today- today we're teetering- today might be disastrous.

her teacher asked what she wanted to play?

silent night

it's june

oh- yankee doodle

and with that, she just hopped up and started to play, in a very flexible way- she made a few mistakes- but roled with it- she even fell getting off stage and landed on the keyboard, making a very dramatic exit, but didn't even care- it was like no big deal.

and this is the mystery of this child. she had a complete meltdown over being told what might not be a good thing to say, in the privacy of her own home. but has no fear or anxiety about getting on a stage, with out any preparation and playing piano- doesn't get phased by error or even care that she fell off the stage. not perfect- but ok with her mistakes. i would never have been able to do that. but the fact is, it could have been reversed- on another day. she could have thrown a fit on stage and pounded the keyboard and cried, and not cared about being corrected in conversation.

from what i remember from psychiatry rotations, stress is significantly exacerbated by unpredictability. humans can deal pretty well, even with really hard and terrible stuff, when we know when it's coming. high stress comes from not knowing when the ball will drop- not knowing when your brain won't be able to do math- or when you can't formulate your idea with words- or when your daughter might loose it.

when we left the festival mike took the boys home, and zoe and i went off so she could buy something with her money. but nothing at the art festival was under 8 dollars. we finally found a little store and after much debate she settled on a set of glitter animal "silly bands".

i tried to convince her to buy the 'fairydust'- but she wasn't interested- rats!

i'm thinking "phew" these are what a "normal" 10 year old girl would buy (maybe 8 year old, but close enough). we managed to escape another tiny stuffed animal or plastic princess crown, or wind up toy. but did zoe want to wear them on her wrist? no - she wanted to play with them, to line them up and count them, to have them have conversations with each other- to compare their features. now we were at the ice cream store, (she had the non-dairy sorbet- delicious) and in front of us are three girls her age. they're wearing armfuls of silly bands. they have shirts written on or signed by their friends, they're just hanging out.

i felt that heart pang. that longing- for normal- that feeling of feeling sorry for us. followed quickly by guilt and then sadness at my short sightedness- my human simplicity- my inability to ride it out- to have her bravery. i want to stand on the stage of my life- and be ok with not-normal, with "different, not less" and believe it.

most days, thankfully, aren't like this. most days i see her for her beautiful, amazing, interesting self- with out a thought of comparison. most days i don't think of "normal or not normal". and in reflection, i'm acutely aware of my disability, my weakness, the parts of my heart that are hard, selfish; much more so than hers.

she's working through the really hard stuff of her life. she's becoming her own. i need to spend more time re-framing it for me and letting her just be.


because really...

she spent the morning, grieving her challenge with appropriate social communication- and her ten year old desire for independence from her parents.
she then pulled it together- had fun and hung out with a friend at the festival, and played her first piano gig- she bought some age-appropriate toys and was very creative in her use of them.


it's all in how we write the story-