the BNG

a few weeks ago, someone came outside dripping wet, wearing only a towel and a lone-ranger mask that says 'trick or treat' beneath the eye holes, and announced that she wanted me to meet the new her. "butt-naked girl."

i'm not making this up.

i was standing in the doorway, at 1pm, looking at my 17 year old in her mask and towel. i listened to her rant about wanting to be a rebel, to "run around outside butt-naked and throw things and break glass."

it was both hysterical and sad and it brought up the usual questions for me, "oh dear God, what is my life?" and "what got her all riled up?" and typical thoughts like, "here goes the next hour of my day" and "well, at least she's finally finished the shower, that's something."

the funny part is the lone-ranger mask that says 'trick or treat' and that her superhero alter-ego is called "butt-naked girl". the sad part is what's behind it. the words expressing the frustration of being 17 and feeling trapped and angry, of wanting to individuate but knowing you're also still dependent in many ways- afraid to bite the hand that feeds you. the beauty of it is the truth in her choice of superhero.

emotionally she is BNG (butt-naked girl). she can not keep a secret. she says whatever is on her mind no matter who is listening. she tells on herself when she does something wrong. her emotions ride beside her mouth and we get the joy of listening to every. single. raw emotion. she says what everyone else is feeling but know they shouldn't say. it's both endearing and disheartening. it makes her friends and enemies. it's one of the biggest ways people know that her world is different. because nobody talks as frankly, opening, and vulnerably as butt-naked girl.

a few nights later, i woke up quickly out of a dream where zoe had pulled one of her BNG moves. i don't remember the specifics, i only remember my response which was to quickly dismiss her, to separate myself from her while subtly requesting recognition for my struggle.  i said something like, 'oh she has autism, don't mind her.' with the air of 'and look what i have to deal with, poor me.'

what woke me up was my discounting of her personhood. what woke me was this sleepy realization that i do that. i make her struggles all about me.

ouch. this brought great pause.

we spend all this time as parents talking about how much we love our kids. how we would do anything for them. but what i saw so clearly in this dream was how much of the time, especially with a kid with special needs, it's focused on me. it's about poor me. i'm not seeing her. Her. with a capital H. i'm focused on, 'what can i do to make this stop? to get to normal?' and somehow those questions have felt like i'm caring about her- but in truth, from the 30,000 foot view, they are about me.

so in my mind i looked back at her peering out through the eye-holes of that mask, and i tried to image what it would feel like to be her. i tried to give her back her personhood. i remembered what i felt like at 17 and how hard it would have been to have needed my mom to wash my hair, and open my soda. to have no idea at all if it's am or pm ever. to have no internal clock, no sense of when i'm hungry or cold, to rely on others or i might get lost. how scary would that world be?? it would be terrifying. how absolutely frustrating. and yet, how often do i forget all of that, and think about the next hour of my day and the inconvenience of spending it talking to her about wanting to break things and be BNG.

it felt like a moment. like the time had come for something but i didn't know what. i was looking down the barrel of the rest of my life and had no idea what really to do? we'd come to a standstill. no longer in school, not doing 'much' of anything, struggling with what ever that 'anything' was. i was hearing myself acknowledge this in my reply to questions like, 'how are you?' with, 'i don't know what to do with zoe.' to which 99% of the time, there is no answer.

this is where God comes in.

divine orchestration lead me to an on-line support group for people on the autistic spectrum and their families . this specific one. after watching some of their videos and reading some of their articles about her issues - managing sticky thoughts, hygiene issues, getting overwhelmed and frozen, i thought it would be perfect for us to do together. i could understand her and she could get some tools to help herself. but that totally backfired. because she's 17 and wants to be a rebel. because she doesn't technically want any 'help'. because she already understands herself, it's me who has the problem.

she's actually right.

after 17 years (6 of which you can read about on this blog), some things have begun to make sense. i have shelves of books, i've read thousands of articles, i've met with many people- all of them focusing on understanding the autistic brain, creating systems that "work" for kids like zoe, trying to help her with diet, learning techniques, adaptive environments, exercises, and medications. all of those things can be important pieces but they are just pieces. they are not the root.


so i've begun to flip this whole thing on it's head. to focus on Seeing Her and fixing me, not the other way around. and let me tell you people- it works! 

it works because she is a person with legitimate, equally valid feelings and sensations. a person who may be so unfathomably transparent that it seems she can't possibly have real feelings or how could she verbalize those deep, shameful, emotions outloud?? she says things like subtitles- painful truths without the face or voice to match the words - and this makes me forget. i forget the very real connection between her actual words and the truth of the feelings underneath them- because of the missing voice and facial expressions. that is what is deeply sad.

what this group in their words and videos and advice and support has given me, is a giant reminder that while yes her brain is differently wired and her sensations are on overdrive all the time, that she is Real. she notices everything i do and say and while she may not show it, it is impacting her greatly. i can only help her by changing me.

all the shelf books and articles and fix-it's are not going to the root. what i have been doing is focusing on the fixing- now i need to go deep to the root. the root is acceptance.  moving inward. being with my pain of not being able to easily identify with my first born child. being with her in her pain of struggling to connect. experiencing joy as i learn to see Her and learn to relate to her as she is, not change her. experience the freedom as i stop fighting what is.

i don't think finding this website when i did was a coincidence. 
          
God was listening. God was watching the BNG moment. He was in the delicate timing of things. symphony like. if we look, we see the divine hands all over our lives. but we have to be attentive and intentional.

i'm working on an inside version of BNG. to be vulnerable and transparent within my self. to expose all the feelings inside, to hold space for all of them and be with them. i'm working on acceptance.
for zoe, the feelings themselves are so overwhelming that she spits them out her mouth to avoid feeling them. what i spit out of my mouth is often coming from similar overwhelm but hidden in blame or anger.  i'm hoping that as i learn to be butt-honest with my own feelings,  i will be able to help BNG to not just verbalize all the stuff inside her but allow herself to feel it too.

something is beginning.

what if?

what if things, whatever they are, were enough.
as they are.

what if i could let things be enough?
what if i could let me be enough.

i've been in a funk the past few days. why? it's nothing new. it's the myriad of things. the weeds that grow around the growing seedlings and choke them. the things in life that are just really hard and not fixable. the things that most of my life i've spent doing everything i can to fix or soothe or at the very least, ignore. i'm sure i'm not alone in this- this process of avoiding, or escaping the overwhelming bits of life. it's this process or lack of process that drives addictions and drives thoughts and words and actions we later regret.

yesterday in the car with mike i was going on and on about my funky mood. i'll be honest, i was annoying myself. i was tired of the sound of my voice and the attitude beneath it. i was tired of feeling the feelings of sad and stuck and 'i don't know what do'. and after several minutes i began complaining about my complaining and then apologizing for my complaining. and then mike gave me a gift. he showed me something that i couldn't see on my own. he basically said that it was fine to complain, to vent, to feel these things, that he didn't mind listening because now, i wasn't asking him to fix it. i wasn't grappling. i wasn't turning my life into a rubix cube and shifting rows back and forth frantically trying to make all the colors match up. he showed me that actually, i was feeling it, sitting with it, processing it, and that was good and new for me.

it was like someone turned on the lights.

because i could see it and i could feel it- even though it didn't feel good- it felt real and honest and necessary. and then i began to remember how i 'handled' this kind of thing before. i would gather all the kite strings of the problems in life that were flying helter-skelter overhead, and channel all of them into some grand singular puzzle that had a solution. there would be desperation (which i would have called passion). it would involve sacrifice (but really some sort of anxiety turned excitement masking as sacrifice). all of the nervous energy spent chasing the kite strings would now have a purpose and the drive behind whatever grand idea i had would be very hard to reckon with. poor mike.

there are problems with this type of "handling"- many of them. for one thing, it often didn't get past the research stage. for example. the fatigue of life here, the fatigue of special needs, the unknown of rose, of summer plans, of zoe's life, the challenges of work, of fundraising, of being a parent, of marriage, the season of not knowing what feels like many things, can become " i need to find a school for zoe".

in my mind it goes something like this, "if i find a school for zoe, everything will get better. i will feel better. she will have something to do, something will be settled, everything will get easier. it could lead to her independence. it could lead to my freedom. (and greatest of all...) i will have some control!" so there will go my afternoon.

this specific example has happened a number of times- okay way too many times. it ends with me circling back to where i started. there are no ideal schools. not here. not in our budget (which is really nothing).  which reminds me that i'm here. in a place with no services. sometimes i'll feel better briefly, i've done my due diligence. sometimes i'll feel worse. but i won't have done the harder part of looking at things as they are. feeling them.

of letting things be.
and be enough.

this is where God comes in- (okay i know He should have come in earlier, but i'm in process).

God's like, "give Me the rubix cube. here is a paint brush- stop trying to solve and fix- take what you have and create. let Me mend. it's not to be solved. it's to be lived."

the other day rose and i were watching a 'next top designer' type show. the finalists were given a mystery fabric and had a given amount of time to make an assigned clothing item. it was honestly pretty stupid- make an undergarment, secret ingredient....movie theater seats (didn't make that up) and it's kind of applicable. because sometimes i feel like my life is trying to make an undergarment with movie theater seats.

i'm like, 'God? did you see what you've given me to work with here?? my life stuff doesn't even make sense. i'd like to sit here and argue and complain about how impossible it is to make clothing from seats!'

and God's like," have you seen what i've made that lives at the bottom of the ocean and no one ever really sees except because i've created someone who would actually go down to the bottom of the ocean and take a picture of it? now, go! this is your life, your chance, create-it's actually more than  enough."  

sometimes life feels impossible. the tasks overwhelming. the effort exhausting. sometimes i would rather sit in the movie theater seats then deconstruct them and create something totally different. but this is what i've got. and here is the trick. it's not a mistake. what feels like brokenness, can become a gift. it's a gift. so is yours whatever your movie theater seat equivalent is.

"Three times I pleaded with the Lord to take it away from me. But He said to me, "My grace is sufficient for you, for My power is made perfect in weakness. " 2 corinth 12:8-9

i have begged to get a new secret ingredient, for God to change out the theater seats for some normal fabric, something easier to work with, something that doesn't smell like popcorn. but. but God says, here's the deal, your sufferings can be about something bigger than you. give Me what you've got. take what you have there and let me help you make something beautiful- you are fearfully and wonderfully made- your life story is in My hands- I make all things new- I am in the business of restoration. it will be hard. it is not easy. it will hurt. but you have been given the opportunity to do something different. the opportunity to see things differently."

what if my greatest struggles, my wandering kite strings, are more than enough to grow me into someone who loves so well, people know it can only be grace? what if all my weakest spots - shine light on the faithfulness of Jesus. that actually is enough. my story, as it was and is and will be, could be the most amazing, unique, work of art. so could yours.

but to live it well, i have to feel it first, all of it. not avoid or ignore or soothe, i have to accept and embrace it. that is where it begins.