Thursday, September 26, 2013

understanding feeding - the things we take for granted during those 3 squares a day

can you recall a time when you've eaten a saltine cracker?

think about it now.

concentrate on the sensations you experienced upon putting that salty crisp snack into your mouth.
how did it feel? how did it taste? how did it smell? how did it sound? 

more importantly, how did the cracker change as you chewed it?

if you answered "it went from crispy to soggy" you are correct. 

but that's just the easy answer. 

want to know the complex explanation behind that easy answer?

with every single chew...the cracker LOOKS different

with every single chew...the cracker FEELS different inside the mouth

with every single chew...the cracker SOUNDS different

with every single chew...the cracker TASTES different 
(the enzymes within our mouths that begin to break down food detect differences in taste with each chew)

with every single chew...the cracker SMELLS different 
(the odor receptors in the back of our mouths/throat detect differences in smell with each chew)

with every single chew...there are changes in head position (vestibular sense)

with every single chew...the jaw joint changes the amount of pressure to use (proprioceptive sense)

with every single chew...the body adjusts the amount of glucose it produces, and focuses on satiation peptides and stretch receptors in order to decide how much more to eat (interoceptive sense)

all this is happening within our beautiful, intricate, amazingly elaborate bodies with  




and that's just in a typical body.

now take a child who's body is over responsive to sensory input.

his system does not easily process all this detailed information.

with EVERY SINGLE CHEW his body is working over-time.

eating is a chore. 

it's a chore he struggles with. 

it's a chore he is not able to do successfully.

it's a chore that results in failure.

how would you feel if you failed at something at least three times a day?

i'd feel defeated.

i'd give up.

i'd avoid it. 

we take eating for granted. we think it's easy. we get out a package of saltine crackers, open it, and before we know it the entire sleeve has been gobbled up. 

the truth is eating is the complete opposite of easy. 

it "is the MOST complex physical task human beings engage in. it is the ONLY human task which requires every one of your organ systems, and requires that all those systems work correctly. in addition, EVERY muscle in the body is involved (one swallow for example, takes 26 muscles and 6 cranial nerves to coordinate). plus, eating is the ONLY task children do which requires simultaneous coordination of all 8 of our sensory systems." (dr. kay toomey)

feeding ourselves is hard work. 

if you and your family are successful eaters, if you have one of those exceptional children who will eat anything, if you have a sweet kiddo who will eat most things, if you have never known a difficult battle-filled mealtime, please stop right now and thank the lord.

for those of us who do, or have a kiddo who does, struggle with feeding there is help and hope!

this is the next step in our journey, friends.

on tuesday harrison and i went back to STAR center for a feeding evaluation. it went better than expected, for which i am thankful. once again, i was so very proud of my brave boy as he was receptive to becoming a "food scientist" under the direction of dr. kay toomey, which resulted in him taking miniscule tastes of foods he usually cannot even look at. we will soon be starting feeding therapy. our whole family will be involved, will learn, will adjust, will go through it together.

thank you to feeding expert dr. toomey of sos feeding solutions for providing the saltine cracker illustration. when i asked her, "how do i explain this to our family? how do i tell them harrison's not just a picky eater?" she eloquently outlined for me how our bodies react to eating. she clearly explained how harrison's body OVER reacts to he (we) will have to work very hard to learn how to eat.

no more avoidance. no more giving up. no more defeat. 

it's time for harrison to find success!





Friday, September 20, 2013

we bought a treehouse

oh yes we did!

i'm so excited to tell you that we've partnered with jeremy's parents to purchase a condo in wildernest, colorado which is 45 minutes west of denver. it has two bedrooms, two bathrooms and a loft that will be used as a third bedroom and a play space. it was built in the 1970's and it needs a bit of tlc but it is the perfect place for us to hang out during ski season (for the boys) and in the summer (for me - i LOVE the mountains in the summer!).

we are lovingly referring to it as The Treehouse because it's a top floor unit with beautiful mountain views. the complex has fun amenities - two swimming pools, four hot tubs, tennis courts, playground, video arcade, and an exercise facility. i cannot wait to show you pictures - there will be many before and after photos! in fact, we are headed up the hill this evening to get started on all the work that needs to be done so i'll be sure to snap a few photos before the cleaning process gets too far underway.

until then, though, let me share a picture of the things i've been buying for the treehouse. i've finally found a reason to shop that doesn't make jeremy grumble and complain!

target clearance is my new best friend.

two large mirrors
one picture frame
three lamps
one large metal bucket
three laundry baskets
SIX sets of twin sheets (i might return two)
four cute striped blankets (for the boy's room - two sets of bunk beds)
one large lantern
two smaller lanterns
two six-packs of flameless, battery-operated votive candles
two fabric storage bins

the retail total for these items is approximately $460. i paid just under $180.

27 items divided by $180 comes out to $6.67 per item. that's not too shabby! of course i've been making regular trips to thrift stores, too, in hopes of finding useful items for even less.

we are buying the condo fully furnished but, sadly, much of the furniture needs to go. there are mattresses that need to be incinerated and wall-hangings that need to be trashed and a very large mural that needs to be peeled off the wall. there is furniture that needs to be donated and cabinets that need to come out and dust bunnies that need to be vacuumed.  BUT i'm hoping we can salvage some things too. i think it will be a fun project, especially since the whole family is involved to share the load.

and when the work is done y'all can come for a visit!

wish us luck!

Thursday, September 19, 2013

the eyes in the back of my head

my boys find my mommy instinct fascinating. magical even. heck, i do too. they know i'm wise to their mischievous ways, they just don't know how i'm wise to their mischievous ways.

this is especially true for graham whose longing for adventure has always outweighed his ability to calculate risk. it doesn't matter if the risk is bodily harm or simply being caught, graham doesn't think that far ahead. he's an in the moment kinda guy. i have always said he's his own good time.

harrison, the eldest, the responsible one (not that i stereotype my children. nope. never.) is more of a rule follower. he can be trusted in just about every situation. unless there's an unattended bowl of candy sitting out in the living room.

"how many did you eat?"

"just two."

uh huh. two dozen, maybe! harrison is no match against a candy free for all. but, really, who is?

but graham. poor graham. this kid of mine just cannot figure out how i know what he's up to and why i'm ruining all his fun.

like the time he walked upstairs from the basement and headed out to the garage; "just looking for a really long stick," he said... or the times (yes, times - plural - you'd think he'd learn) i found empty candy wrappers on the floor behind the chair in the living room... or maybe the time i heard very loud banging and crashing noises coming from his bedroom... or walked into the bathroom to see water covering and dripping off the sides of the counter... or when i heard "i'm just going to take this stamp and ink set up to my bedroom for a little while"... or "mommy, i need a sharp knife"...

or, best of all, the time i was loading the dishwasher and noticed that it was completely silent down in the basement. silence can be a very good thing and a very, very bad thing. i knew...i knew that i knew that i knew...graham had stacked two footstools on top of each other, balanced a plant stand on top and was in the process of climbing up to sit upon his four foot high i hollered down the stairs, "graham, do not climb up on that contraption! take everything down immediately and put things back where they belong right now!"

"how did you know what i was doing," he hollered back.

"because mommy knows everything, son."

it's usually at this point that graham tells me i've hurt his feelings and i have to explain to him that disciplining and helping him make wise choices is quite different from hurting his feelings. or sometimes i just say "nope. not me. i didn't hurt your feelings. it was the eyes in the back of my head - my special mommy eyes that always know what you're doing - they are the ones who hurt your feelings."

i find this creates just enough confusion so he'll drop the subject. the eyes in the back of our heads are good for many things, my friends. including blame.

mommy instincts aren't solely useful for catching our kiddos when they're up to no good (or for carrying the blame when we do). i've recently realized something else my gut tunes in on - i know when graham has to go potty. i know before he knows. isn't that just the craziest, funniest thing? and i don't know how i know. i just know. i think it's the way he carries his body in those moments. my sweet boy has a little rhythm about him. he kind of bounces around. he also seems to lack focus on whatever it is he's doing at that moment. and every single time i ask "graham, do you have to go potty?" he says "no." then 20-30 seconds later, sure enough, he's rushing off to the bathroom.

all i can do is laugh because this ingrained intuition really is magical. and not just regarding the silly stuff. my gut has been a huge help on, sadly, numerous occasions when i just knew we needed to get him to the emergency room for one ailment or another. and on a grander scale still, the same keen eyes that help me see the little things - like one son's need to pee - have also noticed the even littler, almost unrecognizable, have-to-be-completely-attentive-or-you'll-miss-it, seem-small-but-are-really-big-issues things - like the other son's sensory sensitivities.

my instincts are valuable and trustworthy and strong. they are worth listening to!

so are yours! what have your instincts been telling you lately?

Monday, September 16, 2013

a real life conversation...

while sitting on the couch next to jeremy, surfing safari on my iphone, i read a somewhat interesting article at entitled 23 moments from twitter history which outlined twitter's rise amongst the mainstream populous. one of the more astonishing twitter tidbits, in my humble opinion, is that in january of this year justin beiber became the most followed person on twitter, boasting more than 44 million followers.

44 million followers? i said aloud in disbelief did you know justin beiber has 44 million twitter followers? that is a crazy amount of people!

i have no idea who justin beiber is, was his response.

i laughed.

then he asked should i?

after a moment of contemplation the only answer i could come up with was a simple, flat nope.


justin has enough followers. he can surely do without us.

Friday, September 13, 2013

one year later

at this time last year i was preparing the house for company. i cleaned the guest bathroom, put fresh sheets on the bed, set out towels and made sure the rest of the house was presentable. our friend rachel ottley was flying in for the weekend to observe harrison, evaluate his issues and discuss the results of her findings with us. she did all that and also spent time drying tears, encouraging our parenting skills and teaching us how to play with both our boys in a therapeutic way.

this weekend marks the one year anniversary of...well, i like to think of it as a race. one year ago on september 14th (the day rach told me about my son) the starting gun shot off and we began a slow and steady marathon. we have discovered so much, for which i am immensely grateful, and i cannot imagine what our lives would be like had we not ventured down this path.

the gains harrison has made are so many. we've gone from noticing a problem to evaluating a problem to treating a problem to seeing improvements to graduating from treatment to noticing new problems.

we have come a long way but this marathon we're running does not have a defined finish line.

this will be a life-long, never-ending journey.

just this morning i met with harrison's teacher, principal, the school's child psychologist, and juliana our occupational therapist, to discuss modifying harrison's school day. he's been complaining that full day school is "tiring", "too much", "hard work" and that he "wants a day off" or "only wants to go for a half day." upon hearing those first complaints my concerned mommy instinct kicked into overdrive: he's actually telling me how he feels! i need to do something about this. i need to honor him and is willingness to express himself! i need to help make his days better.

during the meeting harrison's teacher and the child psychologist made it clear that they would never have known there was anything remotely different about harrison. he participates well in class, listens well, behaves himself well, interacts with others well. all in all, he is a great kiddo and a great student. my response to their comments was this: thank you! i'm so very happy to hear it. but i need you to know that all stuff harrison does well doesn't come easily. his body is working so hard to maintain that level of function!

it's been one year of hard, hard, HARD work!

it's been one year and harrison can now keep himself regulated for a full day of school. it's tiring. but he can do it.

it's been one year and harrison can now identify his feelings and express them. not all the time. but sometimes. and sometimes is more than never.

it's been one year and harrison can now interject comments and carry on conversations. it's easier if the chit-chat is about a subject he loves. but factual conversation is better than none.

it's been one year and harrison can now tell us his likes and dislikes. it might be hard to hear. but we value every bit of insight.

it's been one year and harrison can now watch movies without a breakdown. not every movie. but we've had family movie night a few times and that's a BIG win.

it's been one year and harrison can now talk about his day. it is sheer joy to listen to him spill over about his life as opposed to pulling information out of him and still ending up with nothing.

it's been one year and harrison can now say things like "mommy, wouldn't it be so amazing to walk on a rainbow?" he said that earlier this week. it's the very first abstract/imagining statement i have ever heard him say.

it's been one year and i can now read harrison's body. i still have questions and wonder where in the world that behavior came from. but i know him so well.

it's been one year and i can now advocate for my son in an honorable, respectful yet fierce way.

it's been one year and i can now help him create strategies for dealing with every day things that might bother him.

it's been one year and i can now talk to him about his body and his brain and how they are so beautiful and so unique and how it makes me so happy that god made him and i am so lucky i get to be his mommy.

it's been one year.
it's been one very long exhausting year.
it's been one damn good year.

Tuesday, September 10, 2013

a real life conversation...

 ...about mama spiders.

the scene: whilst sitting around the dinner table, finishing up a lovely meal of something or other, out of the blue harrison starts up a dialogue.

harrison: mommy, guess what, did you know baby spiders eat their mom?

me: what? really? where did you learn about that?

harrison: we watched a video at school today.

me: tell me more.

harrison: the baby spiders hatch from eggs and they haven't eaten in a long time so they really need to eat to get strong so the mommy spider gives up her life for them.

me: that is a perfect picture of motherhood.

(jeremy spits out his water and laughs.)

(harrison and graham stare at us, completely unaware of the hilarity.)

Thursday, September 5, 2013

eliminating gluten to reduce pain

**edited to include links to some of my favorite gluten free recipe sites (at the bottom of this post)

this post is dedicated to my friend, ro, whom i've only "met" through email. she is a fellow migraine sufferer in the midst of the overwhelming pain and nothing-is-helping-stage of migraine that is oh so familiar to me. just yesterday i discovered one of graham's favorite preschool teachers is also a sufferer. she sees a neurologist every three months to receive 38 botox injections in order to keep her headaches at bay. and over the course of the summer i had two other people ask me about my gluten-free lifestyle and how they could help their own families cut out gluten. friends, this post is for you.

i, too, have tried injections - of lidocaine, not botox, although i've certainly considered trying botox. i've spent thousands of dollars on chinese medicine which included acupuncture and choking down the most horrid chinese herbs (mixed in warm water. it tasted nothing like herbal tea) twice a day. i've spent thousands on neurological tests. i have even recruited friends who live in arizona to drive across the border into mexico and find black market versions of my prescription medicines in order to save a few dollars - and they were still super expensive!

clearly, we sufferers are willing to do just about anything in attempts to decrease our pain.

the one thing that has helped me more than anything else is eliminating gluten from my diet.

god bless lisa turk, a chef and consumer awareness manager at whole foods, for suggesting the idea after i had casually mentioned spending yet another weekend in bed with a migraine. what the heck is an elimination diet?! you mean what i eat might be causing my pain?! you're kidding! she told me to cut out gluten and dairy for at least 90 days, then try adding each back, one at a time, to see how my body reacts. i went home and googled something like "gluten + migraine" and stumbled across a scientific study from 2003 that boasted 100% results from the subjects who eliminated gluten from their diet. now the study (which i cannot for the life of me find today) clarified that not all the subjects were 100% migraine free BUT each person found that their migraines were either less frequent or less intense or gone altogether.

100%! i can't argue with that! so, i began the process of cutting out the gluten. here are my very unscientific, unfounded thoughts (aka opinions) on the subject:

* i believe some people, like myself, just have bodies that are prone to pain and highly sensitive systems that do not like certain substances. for me that would be gluten, dairy, soy and sugar.

* i do not believe gluten actually causes a migraine.

* i do believe gluten causes INFLAMMATION within the body.

* i believe it's the constantly inflamed state that our systems cannot handle and, therefore, eventually results in extreme pain (migraines for me).

* i believe any person who experiences chronic joint pain, neck and shoulder aches, headaches/migraines, fibromyalgia, would benefit from trying an elimination diet.

so, how do you do it? again, here are my thoughts on the subject:

* is going gluten-free easy? hell no! but neither is drinking chinese herbs or being injected with botox or paying $50 for one bloody pill!

* going gluten-free is much easiER these days, though, as there are now so many products available to help you transition your diet.

* your diet should mainly consist of NATURALLY gluten-free foods. these are whole foods like vegetables, fruits, meats (unprocessed, non-packaged...from the butcher counter, not the deli), eggs, nuts and seeds. as the great michael pollen says, "eat REAL food. mostly plants. not too much." if you do this, your diet will be gluten-free without even trying!

* going gluten-free gets trickier when you try to include all super crave-able foods. the breads, cakes, cookies, muffins, grains...all those yummy processed treats and starchy foods and baked goods that are just SO GOOD! let's face it, sometimes we just need some carbs!

* carb-a-licious foods that will become your new best friends: POTATOES!!! and rice and oats and quinoa. oats are naturally gluten-free but are processed in facilities where other gluten-filled grains are processed so you do have to be careful. my body does not mind eating plain old quacker oats but they do make and sell gluten-free oats that have been processed safely if your body does mind.

* read labels! if the package does not specifically say "gluten-free" then the product is not guaranteed to be gluten-free. you must check the ingredients list to see if "wheat or barley or rye" is listed. this can be tricky because wheat and barley and rye can be processed down into things like "hydrolyzed wheat protein" or "barley malt syrup". basically, i try very hard not to buy products that contain more than five ingredients and/or that contain ingredients i am not able to pronounce. what the hell is Disodium Guanylate anyway?! 

* you will have a few hiccups along the way. not long after i cut gluten from my diet a snowstorm hit and i decided it would be nice to make a big pot of chili. i made it the way i always had, using a chili seasoning packet that unbeknownst to me contained wheat. i ate two bowls of that delicious soup for dinner and woke up the next morning with one of my worst headaches ever. when you do stumble, take those moments as a sign of reassurance - i ate wheat, i got an almost instantaneous migraine, so i must be doing the right thing, i need to continue being diligent so i don't end up in pain again.

* once you eliminate gluten your tolerance for gluten will DEcrease and you will become INcreasingly sensitive to it. for a long while on my gluten-free journey i just could not give up chick-fil-a nuggets! why do they have to make those things so dang good?! and, back then, i didn't notice all that much pain when i did eat them. two months ago, however, after being very diligently gluten-free for years, i accidentally (see "hiccups" above) ordered a chick-fil-a salad that contained breaded nuggets instead of the unbreaded chicken strips. recognizing my mistake, but not wanting to take it back to the counter and cause a scene, i ate the damn salad and within 15 minutes i felt pain in my neck. my body's reaction was immediate. again, it was a reminder that all my diligence really is worthwhile.

* find some safe sweet treats. when eliminating any food it's so very helpful to find alternatives that make you feel like you aren't giving up everything! really dark chocolate is a MUST HAVE for me. it's lower in sugar and dairy than milk chocolate and satisfies my cravings for sweets. it is very easy these days to find gluten-free brownie, cookie and cake mixes in the regular baking aisle at the grocery store.

* some of my favorite gluten-free alternatives: 

Udi's Gluten Free Whole Grain Bread - i make sandwiches, toast, use it as a hamburger bun, process it into breadcrumbs...

Pamela's Baking & Pancake Mix - i use this to make pancakes, waffles, cookies, muffins, breads, to thicken sauces and gravies, and even to make dumplings. it does contain dairy so i try to use it sparingly. 

Pamela's Cornbread & Muffin Mix - the BEST cornbread i've ever had. my whole family loves this and that's saying a lot!!

Tinkyada Brown Rice Pasta - do not waste your money on any other brand! this is the ONLY gluten-free pasta i've found that has both the taste and the texture of regular pasta!

Brown Rice Tortillas - i'm not particular about any certain brand as i've found they are all quite comparable. i use these as pizza crusts!

Glutino Table Crackers - these contain soy so i use them sparingly but sometimes you just need a cracker.  the Glutino brand pretzels are yummy too.

Cocoa-Snapz Cereal - enough said! :-) all the gluten free cereals i've tried have been good, including all the Chex brand flavors.

these are my tried and true gluten-free staples.

**here are a few websites i often turn to when i need gluten-free recipes:
gluten free girl
gluten free goddess
elana's pantry
against all grain 

if you'd like more information on how eliminating gluten can reduce pain i'd encourage you to research it for yourself. a quick google search just now lead me to this book which appears to describe the connection between diet and inflammation and migraine. i have not read it but just might have to buy it! i also found this blog post interesting. it states, "The most common food triggers I see clinically for many is not the typical chocolate, alcohol, aged cheeses, or MSG, but instead being dairy, gluten...". i have certainly found this to be true in my life.

i hope you've found at least one tidbit of helpful insight from this post! good luck jumping onto the g-free train! it might be a bumpy ride at first, but it's a journey worth taking.