A couple of months ago I intended to blog on this fabulous book (The Sneaky Chef) we had bought, hoping to increase nutritional value for our whole family, particularly Alex. I mentioned Alex’s food quirks and “rules” a little in my post “Islands in the Stream” and promised to check back in about the book.
Well, here I am. A little older, a little wiser, a lot more cooking under my belt than I typically do. I enjoyed my experiments and the creativity exercised in the kitchen. I really enjoyed that because of my abnormal level of fatigue and pain (yay, isn’t arthritis fun!) Jeff did the dishes and the grocery shopping so I could focus on inoculating tasty and fun foods with extra nutrition to make one of kiddo’s primary personal goals (and one of our goals as his parents) come to fruition.
Alex wants to grow up big and strong and healthy.
And we want him to grow up big and strong and healthy as well. (By big we mean: Not frail)
We have always avoided the concept of “the clean plate club” as in my million plus years of Weight Watchers meetings I had seen and heard of the fallout of such parenting & nutritional methods. And, as someone who has been on a diet since 3 weeks old (yes, you heard me: weeks) and I am still experiencing the fallout from that (I’ll cover that in another entry, at another time. Promise.)
So I am particularly sensitive to not taking the warden approach to nutrition. Our goal for Alex, in all aspects of his life, was to give him the tools to be able to make the best decisions, for himself, in his life. This applies to work, health, his personal life, etc… I do want to thank Early Intervention for asking us the important question of what we want for him and his life. We learned to keep it non-specific enough that we don’t suffocate him with our expectations, but enough that we can build goals. Good and important stuff.
So, we decided to start “Sneaky-cheffing” more nutrition into his regular foods and he even helped me (we both got so messy! he didn’t freak out completely! it was wonderful!) prepare a few recipes.
But guess what we found out? Our experiment reiterated that kiddo will probably never eat a casserole or anything remotely resembling a casserole- even homemade macaroni & cheese with real cheese rather than packet of powdery stuff is too much of a multiple texture experience for him. He’ll eat Annie’s Mac n’ Cheese but not the stuff I spent so much time planning and prepping and cooking. He also won’t eat any whole vegetables other than carrots. Think about it: Carrots are the same consistency all the way through- I can’t think of another vegetable that does that…Maybe peeled and cooked potato chunks-but then there’s a certain graininess, and with sweet potatoes a certain stringiness… Anyway, this goes beyond regular little kid dislikes and pickiness- these textures actually make Alex dry heave (or barf. Depending how deep we are into the meal.)
Some ideas from The Sneaky Chef worked beautifully- the idea of adding extra nutrition everywhere has stuck with me- even as far as adding water to a recipe (or instructions on a box)- I don’t add water (well not every time, I still need to work on the planning thing!) but use a nutritious liquid instead. I learned that blueberry juice doesn’t curdle milk and makes a fun colored alternative to plain white milk (or soy milk…Alex seems to change his preferences every couple of weeks)…
I also learned that we can sneak some of the purees suggested in the book into some foods, without objection.
Then Alex saw the jars. Ok, when I first started using the book I made my own purees. But as backups we had the recommended jars of baby food (not all of the purees are available as baby foods, and the homemade purees and mixes are much cheaper and not difficult to make and freeze).
Alex saw the jars. I took a deep breath. He voiced a little panic about baby food being for babies.
So I asked him (remember, he is deeply logical and literal and rule based. Think Spock to the nth power):
ME:Who eats baby food?
ALEX: Babies
ME: Are you a baby?
ALEX: No. I’m a big guy. BIIIIIIIIIIIIIIIIIIIGGGGGG! (makes war face and flexes and almost knocks himself over)
ME: What do you eat?
ALEX: Big Guy food.
ME: If you eat a cracker is it Big Guy food?
ALEX: Yes.
ME: So if you are not a baby and you eat the stuff in this jar then what is it?
ALEX: I’m not a baby!
ME: That’s right! You are a big guy! SO, if you eat the stuff in this jar & you are not a baby then the food in this jar cannot be baby food! It’s only baby food if a baby is eating it.
If a BIG GUY is eating it, it’s called “PUREE”!
ALEX: I like puree!
ME: YAY!
So, after all of our experiments trying to sneak “puree” into his foods we found out that Alex doesn’t like it mixed in. He likes it plain and separate from his regular food.
Of course, he has to announce, at the start of the meal, “It’s only baby food if a baby is eating it. If I eat it then it’s puree!”. Seriously. He says it every time.
Perhaps, if he adjusts to the taste this way, he’ll be more accepting of various textures eventually. Until then, I’m happy to serve him his vegetables in this manner.
A wise person once said, in regards to parenting, “Pick your battles”.
As he slugs down jars of summer vegetables (a sneaky way of disguising what actual veggies are in there- summer veggies are ok, broccoli & spinach, etc -not so much. Don’t forget, on top of our Adventures with Asperger’s, our Alex is still a kid. Sometimes, I guess that maybe it’s like having twins.) I realize that we both are winning and we can focus on moving forward to bigger and better things. I try to point out that it’s like a bisque, but he corrects me “Puree!”
I still think The Sneaky Chef is totally worth the purchase (Amazon has copies from <$2.00 + shipping to brand new…any which way, I think it's worth it) it was a great jumping off place for figuring out some small ways to enhance nutrition for the whole family.
(We have been getting various supplies through Amazon.com lately- yes, the Prime program is awesome! They do carry Earth's Best in 12 packs and Annie's Mac n' Cheese as a 6 pack- actually, with Prime, it winds up being less expensive than our chain supermarket and they are delivered right to our door. I'll post a link to my amazon store soon, where I'll have all of the things I have mentioned with links, to make things easier for everyone!)
My attention was recently called to the Ask campaign. ASK Day is on Father’s Day (June 21, 2009).
The campaign proposes that parents ask about the presence of a firearm when their kids go play in another family’s home. Seems logical, but really, if we teach our kids about firearm safety (do not touch, tell an adult, etc) shouldn’t that be enough? I don’t think so. I don’t think it’s safe to assume all other parents are raising their children in the same manner as you choose. Or that even if you know your child well, that you can estimate the amount of impulse control or safety rules another child may have in their arsenal.
This statistic shocked me: Nearly 1.7 million children, under the age of 18, live in homes with firearms that are both loaded and unlocked in the United States
(Pediatrics, the official journal of the American Academy of Pediatrics, Findings From the Behavioral Risk Factor Surveillance System, 2002, published 2005.)
You can read more at the Ask/Speak Up site
I don’t think anyone can argue with the frightening reality of that one statistic. The risk is there and it is real, and our kids are too precious to make assumptions.
Alex got this roll up keyboard for Christmas this year. We completely forgot about it until Saturday when I decided to print out some easy/beginner sheet music of Ode to Joy to try to entice kiddo to play around with the actual keys (and not just put it on demo over and over and over again)…
So I played Ode to Joy for him, with him standing between my arms hands hovering over mine. And then Eureka! I decided to color code the keys and the sheet music- I figured if he could learn this one song- his heartsong- he would be hooked and hopefully would step away from his ipod and radio and make some music himself.
I sat down with a fistful of magic markers and started making dots.
Alex had other plans- he went to the end of the keyboard (I had played it for him from the center of the keyboard) and this is what he did:
Today we went to the Kindergarten graduation ceremony at Alex’s school. Alex and the rest of the pre-primary kids had prepared a song. I slept a little longer than the boys this morning, and Jeff got Alex dressed. Alex was thrilled to wear a buttondown (his favorite type of shirt) and his rockin’ tie from Toybreaker.Etsy.com. (Alex has been doing mostly kindergarten work this year, but will be starting his official kindergarten year in August as we all agree he needs the extra time, and the nature of the program allows for this flexibility which is important for a kid like Alex who is uneven as far as development goes.)
We got to school and took our seats…Listened to the squawking of the first group of kids playing the recorder. The next group went up, and gave a little history on Beethoven and his impact on the world and on music, then they started to play…
With those first few familiar notes I looked at Alex and he looked at me and put his head on my arm, and my big boy snuggled so close to me. His eyes were sparkling, starry and happy and overwhelmed and so in the moment. Classmates were play fighting in the back of the room, parents were craning their heads to keep track of their wandering pre-schoolers, and Ode to Joy swelled through the room. And for the first time, it was like this was a moment, a song, an experience, that he was truly connected to. His mind wasn’t elsewhere, he wasn’t talking about buttons on radios, or how a siphon in a toilet works…
He sings Ode to Joy non-stop in his head (and many times aloud) from morning to night and probably even in his dreams. It’s his constant. Ode to Joy calms him and provides comfort through the million and one transitions in his day- some of those transitions are so minor to the casual onlooker, that they would never identify them as such. Everything is a transition in some way, Alex is always very aware of this. Ode to Joy is his security blanket. I know the other kids in his school don’t have their personal theme music playing in their mind 24/7/365, but they don’t need to either. Alex needs that. He identified it himself and started using it as a tool. It seems to quiet the rest of his very active mind so he can function at any level.
On some days it seems like walking, chewing gum, and trying to juggle flaming ginsu knives while translating Lewis Carroll using only a Berlitz guide, into an unfamiliar language (with a different alphabet), while someone barks random numbers and throws sand at you, all at the same time.
To decompress after school and on weekends and holidays, Alex stands in front of his radio and watches the numbers and listens to the 10 different versions of Ode to Joy we loaded onto the ipod for him. Occasionally he pops out of his room to declare something Ode to Joy or plumbing related, but mostly he needs this decompression, the radio supplies the song so the part of his brain that has it on mental repeat during regular daily functioning can rest.
But today, once they started to play the song, he was in the moment.
His brilliant and busy brain and the outside world converged in the space of that room, perched upon a folding plastic chair.
He was at peace for a moment, so connected. So was I. My brain is usually working on how to help him and the things I have to do, there is no down time.
But in that short yet gigantic moment today, both of us were present, for the first time in forever.
And his face and eyes, when they met mine, told me that he was overwhelmed that the world had finally connected with him.
Kiddo is a picky eater- he’ll try most anything, but he’s a creature of habit and has sensory issues- so he’s very specific about what he likes and what he loathes…. (and if he changes his mind he will admit nothing!)…
So, he likes everything bagels, corn, and cheese….
So I popped the bagel (with some shredded cheese) in the Rocket Grill and it squished the daylights out of it! So I put it on a plate, put two little morsels of grilled (rocket grilled, baby!) chicken “sunning” on the Isle of Bagel…Of course, the sun is powerful (sun=corn in nifty little pinch bowls…pinch bowls are a lifesaver when you have a kid who cannot handle different foods even seeing each other, never mind *gasp* touching…)
The broccoli is a unique specimen of palm, found only on the Isle of Bagel. By the way, the stars in the blue sea are starfish, and that orange slice toward the back is the mainland (ok, ok, it’s one of those make-a-plate things and it’s an orange moon and a starry night sky)…
So, why does food need this backstory?
Because my kiddo is *that* detailed. He is also very rules based, so artistic presentations of food challenges his deeply ingrained meal & food rules in a fun and somewhat novel way. It’s fun, he’ll argue with me that the palm tree is really broccoli, if he’s tired I know better than to present anything with even .05% whimsy or all hell will break loose. We are working hard to soften some of his rules and his rigidity as living in the world with other people often requires compromise and a little grace and we are getting there, albeit very slowly. How slowly? He’s rules based, he has no gray area, he can’t generalize, so if a scenario is not repeated exactly (ie temperature, light, people present, etc…) he can’t apply the new rule or the exception to the rule, or even withdraw a generalization from his brain/bank to really understand or function reliably.
If you don’t know any kids who are this rigid- imagine potty training a child at home and then take them to grandma’s- most kids can apply their at home potty training to other locations (sometimes with a little urging or reminder and a little modification on everyone’s part)- they can ignore the variables-to a point- and find the constants (the potty, having to pee, etc). Alex can’t ignore the variables so he can see the constants clearly. In the potty training scenario, if you switch up the variables from his home/training base, it’s like he has never seen a toilet in his life and you have to start from square one. (and this isn’t a far off analogy- I was on the verge of making a public restroom scrapbook for him so we could study up before leaving the house- and so we could focus on the visual similarities in the comfort of our home). Is everything this intricate and challenging? Yes. It isn’t getting easier as time goes on, but it is changing, so there is no such thing as boredom. And in all this I can’t stop marveling at the details he notices- it’s like wearing reading glasses- he can see the words clearly but all else disappears…It’s like he can read the words and get sucked into the story but if you ask him about the physical book he has no idea what you are talking about… Raising Alex has made us appreciate the intricacies of thought and reasoning and creativity. Ok, now where was I? :-)
Last night he was in a good mood. He let me explain the food to him. He announced “I like my food plain” and I countered with “it is very plain, I just put it on your plate a little differently”. He hesitated and quickly gobbled up the sun/corn…
I showed him how he can pull a little bit off of the chicken to just taste it (chewing meat type stuff makes him gag or hurl- depending on how far he is into the meal)… And he tasted it and then even ate another little piece without our urging.
Unfortunately, the rocket grill turned the cheese bagel into a crispy, tasty grilled panini sort of a thing, and it was too dense for him to chew (without again gagging…)…
But I feel triumphant… The chicken was no longer stranded as it swam into his mouth and down to his tummy…
Alex declared that it was turning to night as he gobbled up the corn (thereby making the “sun” go down)…
He wouldn’t try the broccoli until I remembered the key to a 5 year old boy’s laughter. He wouldn’t buy the tree devouring giant scenario and then I remembered…
I whispered to him that broccoli magically transforms into horrific, near deadly, rank gas when you eat it.
He giggled and took a bite…
Victory is mine.
By the way, I just received a copy of the Sneaky Chef cookbook in the mail… I’ll comb through it with an eye toward sensory defensiveness (particularly my kiddo’s, but there seem to be a few people cooking for kids like Alex and more typically developing kids seem to have many of the same food quirks) and let you know if it’s worth the purchase… I think kids can learn the joy of healthy foods without hiding them, but when dealing with sensory issues sometimes you have to go behind the scenes, hide the good stuff, and reveal it slowly… And sometimes you have to play with the food.
A while back I found out that the baldguy was playing around on heromachine.com and had won one of the caption contests. The most wonderful prize was a custom drawing by the very talented Jeff Hebert. Baldguy (my baldguy) knew exactly what he wanted for the drawing- a picture of Alex in his Time Machine!
Of course, having a very rule based kid (see my previous post, Alex & The Time Machine) with little to no flexibility on pretty much anything, we knew the details would have to be perfect, and Jeff Hebert came through with a most perfect interpretation. So perfect, that kiddo saw it and said right away “that’s Alex! that’s me! it’s me! in my time machine!” and concurred that the screen and the button were exactly right (and we have only ever heard them described, verbally, by Alex) which, if you know Alex, means that this drawing is spot on, because any variation from his memory or his definition of something- verbal or visual- can send him into a tailspin. Thank you Mr. Hebert and heromachine.com for making a little kid with a pile of challenges feel like a true super hero.
Huge hug from a grateful mama!
Now, without any further delay, Alex & his Time Machine:
Alex & The Time Machine by Jeff Hebert/Heromachine.com
3 days old, first time I was allowed to hold him....
(I chose these image from the NICU… They don’t quite feel like a fit for the post but they kept hollering at me..)
I can only imagine how it feels to lose a baby. Even during our ten days in the NICU, the deaths of the tiny patients were not spoken of, for us outside that baby’s family, it was marked by the absense of an isolet or incubator that was crowded with doctors and loved ones only hours before. We knew, all the parents knew, that we were fortunate as it wasn’t our baby. But it could be. In the NICU the emotional stew that you live in is a lifetime of emotion and stress in a matter of weeks or months…It’s a lifetime compacted into a tiny room and a tiny plastic box with portholes, wires, tubes, and distressing alarms.
A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)
But we were lucky. I don’t think I will ever forget how lucky we were that Alex was ok. My mother was annoyed when I mentioned other babies in the NICU, who were there before Alex and stayed long after he came home, or who “disappeared” overnight-focus on happiness, she would tell me. I truly believe that the stark contrast of what we had, and what could have been- what was a reality for many people, makes me appreciate Alex’s survival much more.
Since Alex’s birth and many changes in the life of our family, I have, in my journey, seen friends and family lose children at all stages of development, at all ages.
I can only imagine the loss of a child. I am grateful that I can only imagine it. Perhaps I am not imagining it accurately, but I know my love for my son, and how the possibility of losing him has felt, and the helpless, drowning sensation that his distress, prematurity,and neuro issues, and the two miscarriages before my pregnancy with him, have impacted me on so many levels… I can only extrapolate and the place where I wind up is stifling, hot and humid, very dimly lit…I imagine it to be like a vat of a viscous substance- like molasses- drowning, muscles aching as they try to move, there are no words, but by some cruelty you can still breathe, even if it’s hard and physically hurts….I can only imagine that the reality is much more terrible that what I can imagine. My heart goes out to anyone who has experienced the loss of a child, their baby, at any age or stage.
My cousins Aimee and Julie, just introduced me to an amazing organization that helps parents who are facing the death of their baby remember their child. The site for Now I Lay Me Down To Sleep has much more detail about the program. Here’s a paste from their about me:
“This is the place where the Now I Lay Me Down to Sleep Foundation gently provides a helping hand and a healing heart. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.”
I checked out the site and I really wanted to help, to honor the families that I know that have lost a baby, which is why I’m trying to help spread the word…
They are currently running a fundraiser to support the NILMDTS mission. Our cousin Jaime is participating in a national model competition that benefits NILMDTS. Please consider visiting the image gallery and voting for our lovely Miss Jaime while supporting a wonderful cause.
You can see Jaime’s picture and vote for her by visiting:
Every vote cost $1.00 and every dollar goes to a charity group close to our hearts, Now I Lay Me Down to Sleep (www.nilmdts.org). Jaime also has the opportunity to have a photo shoot with a renowned photographer if she is in the top vote count by March 15th, 2009. Please be generous and vote by then if you can! You can continue to vote until April 2nd, 2009 to give Jaime the chance to be the National winner!!
I love reusing spools from my chain purchases to hold small things… They are usually wide enough that they are more tip resistant than other containers, which is an important feature for me, what with being less than grace personified and all…
I do quite a bit of work either on a high countertop/bartop where I can stand or sit (mostly stand), or sitting on a softer surface with plenty of back support… Things tend to get flung and knocked over (again, another reason why I hesitate to work with glass and gemstones and if I do I always double the recipe) in either location, this contraption prevents that a bit…
Basically, I packing tape one hole, with a little bit of paper so it’s non stick on the inside of the well… I have, in the past, used double stick tape to tape this to my tray table/lap desk/workbench, but in each location I wound up getting too cocky, started talking with my hands (I’m a passionate hand talker…), and kablammmm! small bits (headpins, ear wires, you name it) everywhere….
And, when working from one of my satellite locations, I like to wind my tape measure around the outer portion… So it’s handy…
Another tip? When Target has silicone baking mats in the dollar section near the entrance I grab a few- they are easily cleaned during messy kid crafts (yet they give kids a colorful background and contrast- very helpful for some kiddos) and they are great when working with things that tend to roll away, a little non-slip grip and cushioning…
