she gave me eyes

it's morning.  it's quiet and drippy after a crazy hard rain last night- all night.  i love that sound of rain pounding on a tin roof.  i think the rainy season is back- with cooler air and mud and the closest thing we get to the pensive feeling of autumn- at least in the mornings before the sun heats up. 

today zoe left for a school trip in eastern uganda. it's a two night get away at sipi falls.  she is so excited, and a little nervous. i am so excited for her.  in preparation, her teacher asked to meet with me briefly yesterday to go over dietary issues and medications. 

when people ask how zoe is doing in school this year- i usually say- "great! i think...."  and i think that because she is generally happy and enjoys school and wants to go every morning.  i think that because i haven't heard otherwise.  i haven't been called in about desk hiding or drama or distraction,  and for that i am so so thankful.  i am thankful for the absence of bad news- i am thankful that people know how to work with her and are willing to do so.  i am perfectly okay with not being in the educational loop on a daily basis- because ultimately i know zoe will be fine.  i know that zoe has her own path- that it is unique- and timed differently- with gaps and spaces and lots of color and texture.  i know zoe's years will be variable and filled with stepping forward and leaping backward and many side steps too, but that eventually, she will end up where she is meant to be.  i have learned this over the years with her- i have learned this because i have faith that God has a plan for her that is way better than anything i could orchestrate.

yesterday during that short meeting with her teacher- my hopes were affirmed.  zoe is doing great.  that means that she is participating enough, that she is learning enough, that she has made huge progress from where she was 6 months ago when she started at ambrosoli- said her teacher. is she different from her peers? yes.  does she learn differently and at a different speed? yes.  but.  she is learning and growing and maturing in typical classroom because the people who teach her are okay with her different.  because they trust that eventually she will be fine.  because they believe that the little moments will all balance out and they can step back and see ahead.  because they can take themselves out of the picture and make her successes and failures about her - not about them.

i needed to learn that too - especially when i was homeschooling her.  i became so enmeshed in her world and her life and her learning that i became lost and overwhelmed and terrified for both of us.  i needed to let her go.  i needed to pull back and be just her mother- that role of guiding and leading and picking up pieces and sticking them back together with out getting my own arms stuck in the glue.

yesterday during that short meeting with her teacher- my faith was affirmed. i heard and saw again, the goodness of God.  the faithfulness.  the fulfillment of promises- for provision- for non-abandonment- for live to the fullest.  wow. 

yesterday i was reminded again of zoe's strengths and her perseverance.  her ability to get up and be in very challenging days.  to return to the places that are hard over and over.  to face the social challenges of a 20+ kid typical classroom. to be the different one.  how easily i forget how hard her days must be and how gifted she is in managing them. wow.

the other day someone sent me a link to an article written by a woman who has a differently-abled son.  she included these wordsworth words about her son- and they resonate about my zoe.

 She gave me eyes, she gave me ears;
And humble care, and delicate fears;
A heart, the fountain of sweet tears;
And love, and thought, and joy. 
                        wordsworth 

and such joy!!

 

listen because sometimes they know

there was a time a few years back when i was terrified of writing that zoe'd had a good day.  i was convinced that i would jinx it.  it wasn't very hard to avoid this, because there weren't that many good days to write about, as she wasn't having many. but there were plenty of hard times, moments when i wondered if i would ever feel close to normal again.

this week, i've begun to feel what i remember to be, normal. and. it's. fabulous.  i spent the early part of the week elated but holding my breath. so happy that each day, my phone didn't ring, there were  no tears, and i wasn't hearing anything bad at pick up.  i was figuring no news was good news- or at least not horrible news- but inside i was wondering what no news really meant.  i wondered as i wrote about her being on the student council, if the joke would be on me, and today i would hear the truth about how much she is struggling, today i would here that she wasn't elected to student council, but assigned, to give everyone a break for an hour each thursday. basically, half of me was thrilled, and the other half was waiting for the shoe to drop.

but it hasn't it.

instead i heard that she's doing better each day.  that she's settling well.  that things are moving in the right direction.  and the weird thing is, they are better at home too.  i assumed that if she was able to "handle" school, she'd definitely fall apart at home.  i figured that we'd have to put up with 5 hours of evening torture as she unwound after holding it together all day. instead, she follows directions more easily, needs fewer reminders, and is calmer, more pleasant and less agitated. there are less sticky thoughts and less force laughter and less arguing about getting in the shower and bedtime and less fighting with her siblings.  it's basically been a great week.

when zoe was nine and things were not easy, she told me she wanted to get her ears pierced. i was fine with her age, but i couldn't believe that this kid, with her scratchy-i-won't-wear-jeans-don't-comb-my-hair sensory system, would want either the piercing or the feeling of earrings.  i told her all that.  she said she was ready- really- and that i should believe her.  i decided she deserved a chance- but said that she couldn't get one ear pierced and change her mind- it was all or nothing.  "deal" she'd said.

she was right. i was amazed.  she tolerated it and has never once complained about her ears or her earrings. 

i think going back to school has been like getting her ears pierced.  she knew.  she was ready.  she was done with homeschooling and even though it was risky and scarey and emotionally scratchy- the balance was tipped in favor of school.  she knew before i did.  and just like the earrings, i'm totally surprised, and proud of her.

it's a good reminder to listen to our kids carefully.  to trust them on somethings, even when they're not yet 10.  maybe this is especially true for kids who are different, who don't make their milestones in the correct order or at the right times.  the ones we fear lack the ability to make good executive decisions.  but sometimes they know.  sometimes they are ready. sometimes they know and we don't. 

it still all might fall apart.  next week could be a total disaster. but actually, not totally- because we've had this week.  we've been reminded.  we've been surprised- okay i have- i think she knew it would be fine all along.

this day

the last time zoe was in a class room was 3 years ago.  it was a class at a school designed and made for kids with learning differences. still, she felt different.  even her differences were different.  she had become so overwhelmed by it all that she hid under her desk- she couldn't deal anymore- it was over. 

i've written about it before. low point. being called out of a family meeting, where i was trying to help people make decisions about treatment and life and death.  picking her up, finding her there- her little nine- year- old version of life and death.

things changed- we needed a new plan- a plan that apparently didn't involve organized education in any form- a plan that involved a lot of me- me with her- me not in the hospital- me not doing what i'd spent 10 years training to do.  it was hard- but it was good- and it was right- and it worked.  meaning she began to breath, to relax, and slowly to start to learn with out the distraction and pressure of peers.

today she ventured back to school- a private non-special education international school, for a visiting day for students coming to school next year.   this is an amazing community of people from all over the world.   a school not afraid to think outside of the box, they are open and willing to try.  they are kind and creative, warm and welcoming, and they have pet bunnies and a giant tortoise named steve.

i had lowered my expectations as i promised myself i'd do about everything this year.  they were low low.  i felt the day would be a success if i wasn't called to come and pick her up- if i didn't find her hiding under any desks- if her acceptance wasn't revoked.

she did it.  my phone didn't ring.  she was sitting in a chair at the end of the day- the teachers said she did just fine.  her 'work' wasn't complete, she asked a million questions, an aid sat beside her.  but she sat there, she didn't run or hide, she didn't scare away her teacher, and she was smiling at the end of the day.

this is one day.  one isolated day.  that is all. 
this day means nothing about how her next year will be- it is not a guarantee of anything. 
but this day we both could see how much she's grown.
we'll take it and be so so thankful!

i'm sticking with you, 'cause i'm made out of glue

it's been a while since i've written about zoe. 

there was a time when i was so afraid of jinxing the goodness with her, that i was afraid to speak of it.
there can be fear in the naming of things.
in 'harry potter' the evil character is so feared that his name is not spoken, instead he is referred to as 'he who must not be named'.  for me zoe's shining moments, her good days were 'the stories that shall not be told' out of fear that they would magically go away.
somehow we believe that speaking it has power- either to empower the bad thing being spoken of, or in my case, to take away the good things.
but it's time for me to speak of the good, to trust it's not luck, but progress and mostly God sprinkly grace.
it's time.


















so this is a story of a girl who climbed a tree.  not just an ordinary girl.  a special girl.  a girl with visual spacial processing difficulty, a girl with vestibular challenges, basically a girl whose sensory system doesn't send her brain the right messages- so, much of life is scary or hard.  something gets lost in translation between her skin and her brain.  pain, vibration, awareness of her body in space (propioception) are perceived and delivered- but the volume for her is either turned way up, or turned way down. 
a girl who cried walking up a steep driveway a few years ago because she felt off balance.  a girl who can't go upside-down, who has never done the monkey bars, whose palms sweat profusely when she feels she might fall, when the surface is unstable, or narrow, or high off the ground.  and here is my girl. high up in a tree.

this day zoe's friend came to the door,
"we were climbing trees and zoe is stuck. can you come and help?"
so mike went.  sure enough- there she was way up the tree (the picture doesn't do it justice).  she had climbed up all by herself, with the encouragement of her friends, but getting down was looking tricky. it was getting dark and so mike helped guide her down- but she did it by herself.  initially she was upset by having had help to get down, but after a couple of minutes she was back to feeling proud about climbing the tree.

i know that doesn't sound super impressive.
so she's a kind of uncoordinated 12 year old who climbed a tree.  but.  you have no idea. 
(unless of course, you've read the first year of this blog, or you have a child with nonverbal learning disorder or aspergers or something like this. unless you belong to that club you never meant to sign up for- parents of kids who are different.)

zoe used to get stuck on things.  she had 'sticky thoughts' -  ideas that glued on and wouldn't let go- irrational beliefs that preoccupied her.  one of her favorites was 'getting help'.  she would ruminate, perseverate, and fall to bits over getting help, or anything she considered assistance.  perhaps the most annoying of all would be the crash and burn following my response to her asking for help.

"mom, have you seen my shoes? i can't find them anywhere!"
"yeah zoe, i saw them on the back porch."
"OHHHH!! why did you HELP me??  I HATE HELP!"foot stomping, dramatic body language.  "MOM i don't NEED HELP OKAY!  'oh, here they are'- DOHHH why did you TELL me!!!" throwing crocs off the porch down onto the back yard.
"but zoe, you asked me where they... oh never mind."
and i would break into that old velvet underground song "i'm sticking with you - 'cause i'm made out of glue"

this was my life for a long long time- this was her life for a long long time. every day, many times a day.  these sticky thoughts were like a giant vacuum sucking away our joy.

when we moved to africa, i began to do a lot more praying.  not just because the roads are practically a death sentence and malaria and other tropical illnesses abound, but mostly for other people who live on the other side of the world- for our senders, our supporters, who have made sacrifices for us to be here serving the people of uganda.  one day soon after we arrived, i began to pray specifically for zoe's sticky thoughts in a bold and clear way.
i didn't do the usual, 'help!' or 'please help us as we try to help zoe'.  i decided to pray with conviction, to plead with conviction: 'God, i know you can take away zoe's sticky thoughts completely, so i'm asking you to- okay, i'm begging.  i don't want help dealing with them, i want them gone. over. done with. please cure her of sticky thoughts, free her from the limitations of her own mind.'   and really, He has.

do i hear an amen?

as zoe likes to say, "those were hard times."

so her little blip back into the land of not wanting help getting down from the tree, was not that big of a deal,  it was only a blip and not falling apart. the turn-around time was a few minutes- not hours. and this is good.
sometimes i wonder if her brain doesn't 'visit' it, like an old memory- or if occasionally the wires get crossed for a second.

the other day, we were at a store and zoe saw a 'police set'.
"oh the boys would love that!" she said.
"you're right! do you want to get it and give it to them for Christmas?" i said.
"oh yes! what a great idea."
i was shocked.  that was it?
a year ago, my mere suggestion of something that she wanted to think of first, would have resulted in a meltdown. she would have fallen to bits, and probably so would i, only later when no one was looking.

the funny part is later that same day, she called from the back seat very calmly, "mom, i wish i'd thought of getting the boys those toys for Christmas."
and i started to laugh.
"what's so funny mom?"
"zoe, you know what?  when we were in the store and i made that suggestion, you told me it was a great idea and i was shocked and thrilled.  last year, you would have been so stuck on this- the afternoon would have been ruined for both of us and you wouldn't have let it go.  i actually thought all this in the check out line.  and now hours later, you are so calmly telling me you wish you'd thought of it first."
zoe began to laugh.
"oh! sorry! you're right, my bad!"

so there you have it.  my girl. climbing trees and getting stuck, but in the tree not her own head.  my girl able to let it go.  my girl being slowly freed from a brain full of sticky.  my girl able to laugh in reflection with me. 

and did you hear the part in the story about getting up the tree 'with the encouragement of her friends'? yes.  i said friends.  she has two really amazing and wonderful friends. girls that include her, put up with her idiosyncrasies, remind her gently, that she 'already told them that', cheer her on climbing up a tree, and actually genuinely like her.  did i mention i prayed for them too? i think it went something like this, "Okay God- can you just give her one good friend?  just one.  she's desperate.  i'm begging!"  and it's just like him to give her two- because that's the way He rolls.

and who would have thought all this was possible in the middle of deepest darkest africa?
away from therapy and psychiatrists and social groups and psychologists and PT/OT and special schools.  oh yeah- God did- because that's the way He rolls.  He likes surprises and tough odds, like parting the sea and turning water into wine, and providing friends for a girl who now likes to climb trees, in the middle of uganda.