the chicken fingers lesson

i absolutely don't mind being wrong when someone benefits. i am happy to eat my words.  so i will. 

i was that super skeptical mom who eye-rolled during every conversation about the gluten-free, casein-free diet as the miracle cure for autistic spectrum disorders.  i would stand beside minivans at 'drop off' for special school or camp and listen to the circle of people reporting how much more alert their child was, or less aggressive, off of bread and dairy products. at the time, it looked like a bunch of overly controlling moms, refusing to accept the cards they'd been dealt, grasping for straws, paying too much attention to each little moment, and timing it with what their child had swallowed.   i would stand there feeling smug that i hadn't been duped by jenny macarthy and her followers.  it all sounded pathetic and desperate and impossible to prove. i was a doctor, there isn't good data! and she didn't have digestive problems. besides i had enough on my plate to worry about removing the two foods my child loved most-bread and milk- for at least 6 months before i even saw a difference.  but a part of me wondered, and felt terribly guilty that i wasn't willing to hop on that bandwagon. because i knew in my heart, that i too would do anything for my kid- but was also rather lazy, and way too impatient.

"oh just wait- you'll try it one day." said one the moms in her minivan with the multi-colored puzzle piece 'support autism' bumper sticker. 

'yeah right' i thought.  i'm not part of your club. we don't have that diagnosis, so maybe i'm off the hook.

but then things got worse and i became a desperate mom.  so i went to whole foods over (of all times) thanksgiving at our siblings house, and poor zoe ate rice pasta and vegetables instead of stuffing and gravy-and she ate her own special pie.  it lasted for one week, maybe.  i saw no change, so we went out for pizza. i was so glad that experiment was over, i'd tried it, and i was right.  besides, her life is hard enough with out depriving her of ice cream! 


time went by.  i became an even more desperate mom as i watched her struggle worsen.  i decided that if there was something there, at all, that if she had to eat straw for the rest of her life and i did too, but it helped her to regulate- it would be worth it.  i decided to try a redo- a long, real trial.  i wasn't expecting dramatic- just hoping for something.


so about a year and a half ago- we took her off gluten. she'd already been off dairy for a year and in that year, the digestive problems that i'd denied- improved.  (sometimes you don't know it's broken until it's fixed).  it was a slow and subtle, but there was a difference, an awakening of sorts.  i also realized that she began to grow.  i mean three inches in less than one year (more than she had grown before in that time). i wasn't completely convinced it was her diet- but i wasn't about to feed her pizza either.


at her birthday party on friday- there was a platter of chicken fingers. the real ones- breaded with regular flour.  she really wanted to eat them, and it was her birthday and i kind of wanted to see what would happen- if it actually mattered.  if maybe the past years growth (in all areas) was unrelated to diet- but a host of other possibilities.


oops....


by that evening she was beginning to fade.  on saturday, she was completely off, checked out, way back in time. i couldn't believe it. she was in a zone- a fog- requiring multiple prompts to do anything- and agitated.  oh dear. 


we talked about it.  we encouraged her to drink losts of water and eat NOTHING with gluten. EVER. AGAIN. today was better, and i'm hoping tomorrow she's be back.


so i'm sold- at least for her.  and i don't care about the science, if wearing purple every thursday is what is helping kids with different brains, i'd do that.  so much of life with zoe hasn't made sense.  modern medicine doesn't know what to do.  everything with these kids is "off label".  the bottom line is....


"Much of life can never be explained but only witnessed" - Rachel Naomi Remen, MD''

and this weekend i witnessed just how much of a difference diet makes for zoe. so i'm sorry friends who put up with my eye rolling.  i'm sorry for not believing in your desperation or your joy.  i'm sorry for my ignorance, my erroneous confidence, my disbelief in what was simply making your life better.  i'm sorry for not celebrating with you in finding a piece of that crazy colored puzzle.  and sweet zoe, i'm most sorry that i didn't feed you better for all those years before.

maybe migraines are better than GFCF diets

i never thought my christmas wish list would consist of: xanthan gum, children's toothpaste, and head lamps- but it does.  gone are the days of a pair of nice jeans and a good book and some bubble bath (although those would be nice too!)  the list is an ever growing compilation of things that are hard to get here, very necessary, and would basically make my life better. 

let me explain. 
the headlamp:  have you tried to do the dishes by dim candle light?  have you tried to look for something with two hands while holding a flashlight?  if you answered yes- then you can appreciate the love of the head lamp.  we have one.  one.  and it is a prized possession in our house.  

the tooth paste: we help brush six pairs of teeth a day (3 kids twice a day) that's six opportunities for people to whine and complain about the 'spicy' grown-up toothpaste, or the awful strawberry-menthol flavor of the local kids paste. 

the xanthan gum:  have you tried to find a recipe for gluten-free breads with out xanthan gum? well it's impossible. finally i googled 'gluten-free bread with out xanthan gum' and found something requiring flaxseed and a blender and electricity, none of which i have, so i'd be better off waiting for some christmas xanthan gum. 

and why am i making gluten free bread you ask? because they don't sell it here, and because i have recently joined zoe in the GFCF (gluten-free casin-free) diet and i'm searching for food that i can eat and enjoy. because i'm starving to death. 

i love bread.  pretty much all bread items.  i love milk and cheese- all types of cheese.  i also have come to see that my diet consists mainly of these things - with some vegetables and meat sprinkled in occasionally.  i'm attempting this GFCF diet for two reasons- solidarity with zoe, and i heard a migraine cure success story.  since i still get a few migraines a month i'm destined to run out of relpax, my medicine, in the next 6 months and it's not sold here.  however, at the rate i'm going, i may have starved to death anyway by then- and i won't know if this diet helped or not!

but i figured it's worth a try and even if it doesn't eliminate my headaches, i'll understand my daughter better.  it's been two days.  i have deep respect and compassion for her.  she rarely complains about what she eats or what she can't eat.  she even checks to make sure there is no gluten or dairy in the food she's given.  this tells me that either she really feels a difference or it's become a 'rule' for her- like putting on her seat belt or wearing her retainers or needing to hear 'i forgive you' instead of 'it's okay' after she apologizes for something.  i hope it's the first. 

for me, it's only been two days and i'm not sure i'll make it.  my diet has consisted of bananas and peanut butter, nuts, bolongnes sauce with out the spaghetti, dark chocolate, many anchovies and coffee with soy milk.  is it better to please the mouth or the head? i'm not sure.

right now mike is in the kitchen making pizza with the boys, i'm mildly drooling at the thought of all that cheese and the crust and the olive oil. 

maybe instead of asking for xanthan gum for christmas, i'll ask for relpax!

life is beautiful

it's been a day of ups and downs and kids struggling to just 'be' in the midst of craziness.

yesterday clover went to her new home.  it was sad- really sad.  after she left- zoe bawled on the couch- bryn tried to cry but kind of couldn't and jude said he was crying in his heart.  i cried because i felt so badly for the kids losing their dog- especially zoe, as it was mostly her dog- and for this monumental step towards our move- our new lives- and because i'll miss clover too.

so i guess i expected that today would be out-of-sorts and it has been.  everyone is mildly giddy and picking at each other and whiny, all at once.  today the boys went to 'vbs' (vacation bible school) and zoe and i had 3 hours to ourselves- just us- like old times- it was nice.  recently i've started decreasing the doses of her medications.  i did this for two reasons- one was admittedly financial.  her medications are expensive and hard to get in uganda and so when i realized that we could leave here with a years supply if i cut her dose down- i thought it was worth a try.  also, i'm curious.  she's been on them for two years - there is not a lot of data on these medicines in children- maybe it's time to try lowering the dose.  the problem is- i feel like i'm looking at her through a microscope again- i'm in data collection mode- science experiment land- and that doesn't feel good when it's your kid you're examining. 

is she stickier than normal?  is she struggling to regulate?  it she better? 

and really who knows?  because life happens.  kids get older- they mature- they change- they have pre-teen hormone drama- and i've been lax about gluten- and dairy- and we are moving to africa and losing the dog and pretty much turning things upside down.  i guess it's not a great experiment after all- too many variables.

but i was impressed with her letting go of clover.  i was impressed with her ability to allow herself to feel it- to cry- to be sad- to not just turn it to anger. this was big- this is progress. 

and it's these times that i realize that it's all so subtle and variable, and out of my hands and we just do the best we can- but really, that is all. we just try.  we do our best.  and hopefully in all of it- we try to love each other- hold each other- protect each other and be gentle.  then we mess it up and start again. 

i think that is why i struggled with the movie 'the tree of life'.  i think i felt the danger and the subtlety of all relationships. i think i saw myself in both the character of the father and the mother.  i saw my potential for abuse and passivity.  my ability to be a victim of my nature and my attempt to embrace the grace.  life is big- i am small.

that is it.  but- life is beautiful.

blue suede shoes and maple bacon whoopie pies

last night we went to a cool function thing called "atlanta underground market"- not to be confused with "underground atlanta".  the atlanta underground market is a social event held at random locations where local cooks and kitchens prepare food and set up  and sell it together in obscure places- and you go and sample and eat and drink and talk and experience.  last night was at an urban goat farm- pretty much abandoned factory buildings from the late 1800's - used by artists, where there are also a lot of goats and chickens.  it was fantastic.  the kids ran around and made a massive mud playground.  we got to just hang out and talk and eat and drink.

zoe and i got all dressed up- well not really- but we wore dresses and necklaces and hung out together.  i was also wearing a fabulous pair of blue suede chunky heels.  i'd spent the morning out with my mom shopping for things for uganda.  things like shampoo and toothpaste and razors for the year.  things like  ibuprofen and kids pajamas and running shoes to replace my ones from 8 years ago.  but these blue marc jacobs shoes were on a huge sale and they were so cute- and i tried them on and walked all over the store thinking- "are these good uganda missionary shoes?"  "do i need these shoes?"  "what purpose will they serve?"  and i realized that they are not great uganda missionary shoes.  that i do not need them.  that i might slide on those little red pebbles on the dirt roads.  but that they do serve a purpose.  the purpose of not being completely transformed into someone else.  the purpose of holding on to parts of me who are with me no matter where i'm living.  and that there will be times when i will want to go out and look nice - even in uganda- even if i'll be walking part way on dirt roads.  times when i won't want to be 'practical' or 'missionary'.  the purpose they serve is maintaining flexibility- of not living in an extreme place- of making it all sustainable.  because that is how things are going to happen- that is how change and work will make sense- if we are able to make our lives in uganda- sustainable.


back at the goat farm, the food was so good- all ethnic and flavorful and fresh and interesting.  beet-basil-lemonade.  ethiopian tarts. tortilla-pineapple- caramel-chocolate crepes.  but the most amazing thing i tasted was a maple bacon whoopie pie-  can you imagine such a thing?  and yes- it was that good.

zoe took one look at that whoopie pie- and said she didn't care that it was mostly gluten and dairy- she needed to eat it.  i had to agree.  because that is the place i'm in right now- letting things not be so extreme- letting things be more gray- and more fluid- and more flexible.  i can't be married to the rules- it won't work well in africa- and it doesn't work that well here either.  a few weeks ago- i decided that it will be hard enough to be in uganda with out demanding that we stick to some restrictive diet- but that i'd better try her out with gluten and dairy before we go so we're not faced with too much change all at once. and so far it's been fine- no earth shattering events have happened.  a good lesson for me.

on friday night there was one of those huge southern rain storms.  lots of thunder and lightening and power surges and tree's falling down.  mike was supposed to be flying home and his plane kept getting delayed so i put the kids to bed and watched a sad- sappy- but good movie called "listen to your heart".  it has a terrible name- but it had one quote that i loved and found very applicable to many parts of my life.  the main character has fallen in love with a girl who is deaf, and says to his friend who is very discouraging of the relationship, " i'm not going to miss out on something that might be great, just because it also might be hard."  i cried.  (the ugly cry.  the movie was really sad in parts!)

but that quote seems to sum up how i feel about my life sometimes.  the greatness mingled in with the hardness.  it all screamed - don't give up.  don't just choose easy.  search for the greatness.  strive for it- even when it's promising to be hard too.  they often go together. 


that is where the weekend leaves me- sweet shoes- a sweet dessert- and working on flexibility.  learning to be OK with hard- because hiding in there is also, greatness.

twirling to stand still

it's quiet. completely quiet- i think for the first time in over two weeks.  mike just took the kids to the park- so i can do work- but my mind is foggy and full of cold medicine and my heart is full of needing to feel things and my soul has been so thirsty for the sound of nothing- that i'm just sitting here enjoying it.

you notice silence only in relation to it's absence - noise- which we're surrounded by.  my 'alone time' is usually in the midst of a lot of noise- laughing, crying, music, a movie in the background.  so this is delightful and i will indulge in a moment of peace.

last night i kept waking up.  i was thinking how easily 'africa' roles off the tongue when you say it at a party- when you tell people you're moving there- but how the reality of it won't.  i've had this cold and a little fever and when ever you're sick you just want to be home- and have your mom.  you don't want to be in a strange place, a strange, foreign third-world place- far away from your mom by an ocean and almost a continent.  so at 3am with a cough- 'africa' didn't sound so good. 

it was also because yesterday zoe and i went to a valentines party hosted by one of her friends who has autism.  i only knew one person- the host, but i felt at home, because i was.  i was with a community of people who get it and are still OK.  and i realized that saying we're moving to africa and moving to africa are very different.  we are leaving our resources, we're leaving our community,  we're leaving people who get it- who get her- who sometimes even, get me.

the party was a mix of typical kids and spectrum kids and zoe who was feeling 'off'.  (i know it sounds crazy- even to me- but i think it's because she ate a large gluten filled lunch the day before).  anyway, there were a lot of great parents to talk with- parents who, like me, stay at a drop-off party, because we're not sure how our kids will do.  parents who's kids also don't eat gluten or dairy and need to take medicine to help them with the anxiety of fitting into a world that doesn't make sense. parents whose kids notice every sound in the room and are easily distracted by them.  parents who have spent years worth of hours trying to understand their children and do what's best for them.  parents who spend many many thousands of dollars on testing and treatment and schooling and therapy and tutors and food.  parents who know that this is not what they signed up for, but it's what they got.  parents who live with the uncertainty of the future for their child, and themselves.  who live with the uncertainty of each day- sometimes of each moment, and the frustrating predictability of unpredictability.  parents who must decide whether to avoid social situations or encourage them, to stay home 'cause it's easier- or go and risk a melt-down, risk looks of confusion, of pity, risk being seen with the reality of your life lived with your underwear showing.

and as i watched these kids, my kid, i kept seeing their strengths and uniqueness.  i could see the joy in their dancing- and hand-flapping freedom- the brilliance of number and sound memory- the ability to be in the moment.  and as i watched their parents i was even more amazed, by their strength and uniqueness.  there was joy and there was peace.  there was an acceptance and an openness.  there was an overall sense that life is just life, people just people, a party is a party, autism is just one part of things.  there wasn't consumption, there wasn't shame, there wasn't embarrassment- well, except for me.

zoe was kind of off- and i knew it. she's also been going through this season of self-discovery.  trying to understand her nvld in relation to autism, to typical kids, to aspergers.  she's been asking a lot of questions- she's been trying to categorize people- to understand.  so i reminded her to please not ask people or their parents if they or their child has autism.  of course, after 15 minutes, she'd started.  i could tell people were a little thrown- because zoe is kind of hard to place.  she's not 'typical' but she has great eye contact, she's hyper-verbal, and she can engage in a pretty good dialogue now (not just the one sided thing she used to do).  the other parents were very understanding, of course.

i began to see, again, that i have problems.  that i seem to continue to twirl through the stages of 'grieving'.  but these parents all seemed to have arrived somewhere that i want to be.  like they'd found platform 9 3/4 to get to hogwarts express, where i just keep crashing into the brick wall.  but in harry potter's world, you need to look for it and believe it exists and be a wizard- muggles can't see it.

then in church i began thinking about the difference between faith and belief.  i tend to think i have a strong faith in God- but now i'm wondering if i have a strong belief, but not as much faith as i thought. "Faith makes the choice to trust based on the joining of heart and mind." because faith chooses the thinking of the heart over the thinking of the mind. and faith is what's transformative. when i look at my struggles with zoe i'm not sure i have full faith in that. and i want to. so badly.

i want to more than believe it exists, i want to have faith it exists.  faith that despite all the difference and challenge- it will be OK. faith that i, too, will 'arrive'- stop twirling- and just BE STILL.  faith in Gods universal provision- even in africa- even in illness- even with a nonverbal learning disorder.

it's in the letting go.  i know this.
it is in the loving. i know this.
it's in the brokenness of the heart- that there is more room.
so i will wait.

"I said to my soul, be still, and wait without hope
For hope would be hope for the wrong thing; wait without love
For love would be love of the wrong thing; there is yet faith
but the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light and the stillness, the dancing. "  TS ELIOT

but maybe, in the dancing-
the acceptance of her flapping-
the tolerance of my own twirling-  shall be the stillness.

blessings

sunny and cold- too cold, but i'll not complain because of the sun. it just smiles down and things are better - no matter what.  the sun gives options- it differentiates- there is brightness and shade and in between- there is dimension. there is hope in there- in those parts. and when the wind blows- the light moves on the leaves and things change and you realize that life changes, nothing is static- even when your heart can't feel it- the light can remind you, and the wiggling leaves, and you can see the possibilities that on a closed gray sky day, you might not.  so i'm thankful.

mike is home.  i'm thankful.  he's refreshed.  i'm thankful. i'm not yet, but i will be.

zoe has had a weird few days-which i'm going to chalk up to the change in mike's going and returning.  once she'd adjusted to him being away (about 2 days into it) she did great.  i mean- last week was great. i also had taken her off gluten.  this should be a post in itself.  i, at risk of offending, have hated this whole gluten- casein free autism spectrum thing.  i have probably hated it because it seems like one more thing to do- or one more thing to feel guilty about not doing.  someone's words hang the air and ring in my ears- 'oh- you'll try it someday- trust me'.  yeah right.  not me.  not us.  whatever.  then two thanksgivings ago- i did- for a week- and that was it.  i'd convinced myself that i'd done it- and now could resume life with bread and feel OK.

then we did brain balance- which i also thought was hokey- and it really helped. we took her off casein.  it really helped too.  so i noticed that when she eats bacon and eggs instead of pasta she does better.  i decided to do it, again, fo' reals. and it's not that bad- it's not that hard- and i seriously think it helps.  i'll admit it.  i'm not proud.  anything that helps her process her world better- is good.  hokey or not.

but just when i'd become a believer in the GFCF diet plan- she had a bad sunday, the day mike was coming home, and a bad monday.  this was really discouraging.

but... there were two good things.  first of all- i was reminded of how far she's come- how bad it used to be- and so i could be thankful.  secondly - i saw how quickly she can now turn it around- and i saw her ability to now reflect on her behavior, to think through the reasons why and to apologize in a real way- not the ' i'm sooorrryy mom!!' but the really apologetic sorry.

then today- she was great. i mean great.  she sat for 45 minutes and completed putting together an esher puzzle- with out a moment of frustration- with out a blink of sticky.  this is actually remarkable for three reasons.

one: this child is visually spatially challenged. she can barely do a regular puzzle let alone a visually confusing one.

two:  it was a set up for frustration- a really hard thing for her to do- me flying around her freaking out about getting the house clean for our realtor's caravan, me vacuuming around her- literally- and she just kept going.

three: she just kept going.  this girl- gives up at the slightest whiff of failure- this girl gives up when the going gets anything but easy- this girl has very limited focus.  this girl sat and focused and did something super hard for her for 45 minutes!  i was so proud of her! but better yet- she was so proud of herself. 

mike is almost home from work- like opening a present- we get to go out tonight.  we're excited like teenagers because absence makes the heart grow fonder.

while he was away- i got to feel the love, but from others.  friends came over.  friends brought dinner.  friends called to check in.  friends helped me with zoe at church on sunday during some major stickiness.

so i feel so blessed- for where we are, for the growth that comes from where we've been- even in the shadowy spots- those dark, lightless, cold spots, and for where we're going.

blanketed in grace.  and so, so thankful.