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.
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.
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