A Letter to My Unborn Son

Dearest baby boy,

For me, one of the hardest moments of parenthood so far was accepting the fact your big brother has a neurological disability (or four).  I vividly remember crying and saying to one of my closest friends "this isn't what I wanted for him."

Some people might interpret that as a selfish sentiment - that I was upset this meant my child might not grow up to fulfill whatever doctor/rocket scientist/astrophysicist fantasies I had. 

But what I really meant was that I didn't want my baby's life to be any harder than it had to be.  He was nearly two and I'd been watching him struggle from the day he was born.  The diagnosis meant that the hand he's been dealt is something he's going to struggle with forever.  Until then, I'd secretly hoped they were going to tell me he was just developmentally delayed and a few months in therapy would put him back on track.  That everything would be ok for him.

Which brings me to you.  And the fact that you could be here any day now.  And after 4 years of watching your brother struggle, I can't help being a little afraid of what the future might hold.

Before Bear was born, if someone had asked me what I wanted for him I'd responded with all kinds of emotionally naive new parent nonsense. 

There's no doubt that being special needs parent changed my perspective.  Things are both more simple and more complicated.  And now, when I put the "what do I want for him" question to you, the answers are harsh in their practicality.

1) I want you to be able to eat.

2) I want you to be able to sleep.

That may seem ridiculous, because ask anyone and they'll tell you that's what new babies do.  But the things is... not always. Not all of them.

Nothing in my life has been as physically and emotionally painful as having a newborn who couldn't nurse.  Going through clogged ducts and multiple rounds of mastitis and the mind-boggling pain of vasospasm was nothing compared to the fear and uncertainty of having a baby who simply lacked the ability to work out suck, swallow and breathe.  By the time I got to the other side of it, even a couple of La Leche women told me they would've given up.

The first days of his life - over a holiday weekend when no one on the lactation help list answered their phones - were a horrible blur of pumping every 90 minutes and dripping milk into his mouth with an eye dropper.  I survived on 20 minute naps - that's all the time there was between hour long pumping sessions that only netted me a precious ounce to feed him with.

By the time he was 7 days old and we were finally able to see the lactation consultant, he had lost more weight... my nipples were cracked and bleeding and blistered and hideously painful... one breast was already clogged and on the way to infected.  The lactation consultant spent 3 hours with us.  By the end of the session, she was in tears.  She'd never seen anything like it.

He just shut down completely.  Trying to eat was simply too much for him. I can't tell you how many times it crossed my mind that if he'd been born in another era (or even a less developed country), he would have starved to death.

She tried every single nursing aid there is.  At the end of that session, we were reduced to finger feeding - taping a tube to our finger and sticking it down his throat to manually stimulate swallowing.  It took a week of that before he started to swallow on his own, from a bottle.

It was a month of gradual steps, weekly hospital visits and tense weigh-ins before he finally developed the ability to nurse, finally starting putting on weight and we were able to move on.

So when I say I hope you can eat...  this is why.  I want to spend your first days and weeks in our family enjoying the long awaited wonderfulness that is you.  Figuring out how to be a family of four.  Not sobbing from pain, not worrying if you're going to be hospitalized from dehydration and weight loss, and not separated by plastic tubes and shields.

Sleeping was just as rough, though in different ways.  Bear couldn't fall asleep unless he was nursing.  He couldn't sleep unless he was physically lying on one of us, and he couldn't stay asleep if we laid him down.  We took turns in the rocking chair to keep him moving.  Our salvation in his early infancy was a vibrating bassinet loaned by a friend.  For the first time in weeks, we both slept lying down in bed.

Bear, December 2007
Vibrating bassinet = Best. Invention. Ever.

As he got older, sleep got harder.  While other parents were putting sleepy 6 months olds in their cribs for full restful nights, we were still experimenting with ways to get him to sleep at all.  It generally took vigorous rocking plus music playing plus me singing lullabys until I was hoarse... in short, an exhausting cacophony of sensory input.

It wasn't unusual for it to take up to 3 hours of this to get him to sleep.  And it wasn't like he had napped too much during the day - until we figured out that he needed blackout drapes, he barely slept in the daytime either.

And when all that finally worked... he generally woke up every 1-2 hours. Pretty much every night. For two years.  He's 4 now - and while it is a whole lot better - rarely a night goes by he isn't up at least once.  By the time he was 3 we were so worn down spending an hour or more in his room every single night trying to get him back to sleep we no longer protested that he worked out how to wander down the hall and crawl in between us.  He goes back to sleep. He's kicking us and hogging the blankets and mumbling in his dreams and we're often awake for the rest of the night... but it still beats sitting up for hours in his room desperately trying to find the right combination of sensory input to wind him down.

Needless to say, I do not wonder what it is that aged me so much I stopped getting carded shortly after he was born.

So again, I say I hope you can sleep... for your sake and ours. Because we want you to be happy.  And to enjoy growing up with your sweet, snuggly, hilarious big brother who can't wait for you to join us.

That being said... it will be all right if you can't.  It will be hard, but we'll make it work.  Because we've been there, done that.  We're better at it now.  And we already know who to call for help.

Love,
Mommy

Beautiful Budget Nursery

When I was a little girl my Grandma had a great big stuffed Winnie the Pooh that I slept with when I stayed at her house. We went through some rough times back then, so suffice it to say we stayed at Grandma's quite a bit.

Sadly, the stuffed bear itself is long gone. But for me, Winnie the Pooh came to represent the safe, comforting home where all my happiest family memories were made. Hence, it's not a stretch to understand why I did both my children's nurseries with a Pooh theme.  My only wish is that Grandma could have lived a little longer to see them.



Money's tight for everyone and we're no exception, especially with Bear's therapy bills and medical bills from this difficult pregnancy. I'm proud of the lovely space we managed to create for the new baby on a modest budget. So many people have asked to see pictures of the nursery when it was done I decided a post was the easiest way to share them, and to provide further details for those who have asked me about specific items.

And for those who asked how Bear handled the change, and how I pulled this off when I've been so sick with this pregnancy... the answer to both is a little bit at a time over several months.  Our primary concern was Bear and his tendency to struggle with even small changes in his environment. By letting him participate setting up the space every way he reasonably could, he's accepted the new room remarkably well - to the point of enthusiastically showing off his "baby brother's room" to visitors.

*Indicates item was a hand-me-down from Bear's nursery or otherwise repurposed from somewhere in the house.

Crib and changing dresser* - The set was a hard won Craigslist find. When I was pregnant with Bear we spent weeks scouring the baby furniture listings and more than one crib was sold out from under us moments after we made an offer. Some days we made 3 hour round trips only to find the items in such terrible shape we passed on the purchase. This set was priced a good bit higher than most secondhand baby furniture we looked at, but was in perfect condition and still cost less than half what the dresser alone would have been new.

Wall mounted shelves* - The ubiquitous $20 Lack shelf from Ikea. They were part of the guest room decor.

Bookshelf and toy shelf - Your basic flat pack bookcases. These particular shelves came from Target. Bear has the same (in a different finish).

Fabric tote bins - Standard issue Target storage totes, about $6 each.

Nursery rocker* - This was our one splurge 4 years ago when we were outfitting Bear's nursery (and given his sleep challenges, worth every penny). After deciding on the style we liked, we shopped around a lot until we found one for about 50% less than retail at a downmarket strip mall outlet. It was hard to convince Bear his storytime chair was going to leave his room, but thankfully a few months ago he started wanting us to read his bedtime story sitting in bed and that eased the transition.

Pooh crib set* - A gift from Bear's baby shower. I wasn't going to waste money on a new one, so the new decor had to take it into account.

Pooh lamp* - $15 impulse purchase when I was decorating Bear's nursery 4 years ago.

Pooh quilt clips - $13 impulse purchase from eBay. I was endlessly frustrated with finding a good way to hang the quilt in Bear's room, and these Winnie the Pooh clips were such a charming perfect solution I couldn't resist.  

Pooh soft blocks - $7 impulse purchase at TJ Maxx.

Vintage framed Blustery Day album* - The album itself is from my husband's childhood, and it still plays. The frame was a $5 wood album frame from a craft store; I painted it white with some leftover paint I had lying around the garage.

Reading lamp* - Was the bedside lamp when this was the guest room. It was maybe $10 at Ikea when we bought it several years ago.

Chocolate brown blackout drapes* - These were also in the guest room, but I bought them in this great neutral knowing I'd like to use them in a nursery someday. Bear had terrible problems sleeping and blackout drapes were the answer then; it made sense to get them ahead of time for this baby. They're from Bed, Bath and Beyond. I waited until I had enough 20% off coupons to get all 4 panels, then I bought them separately to get the maximum possible discount.

Winnie the Pooh Wallpaper Border - I strongly dislike the overly bright saturated colors in the Disney Pooh designs and was frustrated to discover my Target no longer has pastel classic Pooh decor in the store.  I shopped around a lot and was ready to give up when I stumbled across this one on Amazon. 

100 Akre Wood wall decal - The find that inspired the color palette for the nursery.  I was in love the moment I saw it, and felt like $25 was reasonable for such a large piece that serves as the focal point of the entire design.

Paint color (top) - Home Depot, Behr (or possibly Glidden?) in Oyster
Paint color (bottom) - Home Depot, Martha Stewart in Bay Leaf

Awww Sheet

If you asked me two months ago I'd have said Bear was potty trained.  But lately I'm not so sure - between repeated bouts of preschool plague, changing schools and having house guests for a week at Thanksgiving we are deep back into pull-ups territory.  (Can't wait to see how badly he regresses when the baby arrives in a couple of weeks.)

These days, "Mommy, it looks like I need to go potty" really means "Mommy, I just peed all over the couch. Again."

Coupled with his increasing tendency to soak through the nighttime pull-up, we've been doing a lot of extra laundry - the kind where you're wrestling with mattresses and wet blankets.

Perfect for a girl in the last weeks of a high risk pregnancy on partial bed rest, right?

So, yesterday morning Bear wanders into my room to wake me up with his typical "I think I'm kind of soaked" announcement.  (I'm actually grateful this happens so often he's calm about it now - he used to wake up screaming if he was wet.)

He moseyed into the bathroom to start the Woke Up Wet Shower Ritual, wherein he:

- solemnly informs me he got a little bit of pee on his neck
- resists all my attempts to clean the areas actually affected
- stands there pointing the shower directly at his neck for as long as I'll let him get away with it (left to his own devices, this would be until we run out of hot water or die of old age, whichever comes first)

I pop back and forth the few steps between his bathroom and bedroom, trying to always be in arm's reach while stripping his bed and doing a quick check for collateral damage (wet snuggle blankies and the like).

Then I noticed some dark spots on his top sheet. Which means at some point he must have had an undetected nighttime leak and it grew mildew. On the only sheets he'll accept. AWESOME.

I mentioned it to (thank goodness he happened to be working from home) husband and we decided to try the color safe bleach that's been in the back of the cleaning closet forever.  A little while later I walk by the washer and noted a giant suds monster attempting to escape.  Caught husband before I left for afternoon of appointments to ask how much detergent he put in.

He said the regular amount... before he noticed that the bottle of color safe bleach is actually labeled "bleach and detergent."  So, probably triple.   The washer finally choked on the suds, he convinced it to run an extra rinse and we were back in business.

And I know what you're thinking. "No mother of a potty training child is dumb enough to only have one set of sheets." You're right. I do have a set of nice, neutral organic cotton sheets I picked up on clearance just for spare. But that was way before I knew sheets were going to be one of Bear's things.

And the handy dandy spare set?  Don't match his main set. Gawd help the poor soul who thinks they can just swap out the wet one for a mismatched dry one. That's a mistake you only make once.

Cut to bedtime. Bear's lying on the floor mid-meltdown, sobbing pathetically.  His bed still isn't made because those indispensable waterproof mattress pads? Take forevah to dry. 

We decided to let him sleep with us.  I head over to arrange his pillow and blankies the "right" way... to discover the cat puked in my bed. He got both sheets, the blanket and soaked the (worth its weight in gold) waterproof mattress pad. Deep green faux pine needles were sprinkled throughout in silent testimony to the source of his gastrointestional distress.

The cherry on this shit sundae is the whole reason I haven't put the tree skirt out yet is to avoid this annual holiday scenario under the tree. But turns out? I'd rather wash the tree skirt.

So. At this point...

1) Bear's bedding is finally clean and dry, but bed's not made and he's in a full blown meltdown (i.e. if we try to change something in his room at that point I'd be picking his poor exploded brains off the ceiling)

2) Our bedding had just started the 2 hour sanitary wash cycle, and it was already past Bear's bedtime.  A mysterious issue with our washer shredded part of our other sheet set a while back.  And even if we did have those other sheets, we don't have a spare waterproof mattress pad.

Oh, and when that sheet got ruined a couple months ago? And I had to buy a new set? Bear was trau. ma. tized. I thought I was doing well to get the same kind of sheets so they would feel the same. Had no idea a different color would be an issue.  Yeah.  It took him nearly 3 months to get over it.  Last thing I wanted right then was to remind him of the old sheets. (And these are MY sheets. Not his.)

3) I thought briefly of the guest bed.  Thanks to my amazing husband the bedding was already washed from the holiday house guests. But it was piled in a wrinkled heap at the foot of the bed. Also? No mattress pad for that bed.

Husband and I looked at each other over the barren mattress and screaming child and shared a light bulb moment. 

An eternity ago - definitely pre-kids - we got one of those waterproof throw blankets. The kind that protect your couch or good comforter or whatever from, ya know... marital relations.  We figured it should work as a substitute mattress pad for one night. And, well, it couldn't be any more mortifying than that time he was really sick as a baby and we were reduced to using sex lube to get a rectal temp.

Husband goes off in search of said blanket while I working on calming the Bear.  He finally found it in a box... in a closet... in the basement... in the original packaging.  Because we are apparently much better at planning to have wild and crazy marital relations than at actually having them.

We threw the bed together, risking the partial old sheet set. (Yeah, he noticed, but thankfully was still to distracted by another imaginary transgression to do more than tell me they were wrong.)  We finally got him settled and by 10 all three of us had passed out from exhaustion.

I was awakened at 2 am by my amazingly calm husband's voice explaining to a fussing Bear that he had soaked through the bed.  I don't know how, but somewhere in there he managed to make Bear's bed, get him changed into a fresh pull-up and dry jammas and settled to sleep in his own room without ever waking him up.

For my part, I staggered out of bed long enough to strip the wet sheet and throw blanket and add them to the growing pile of bedding in line for the wash.  Defeated, we went back to bed on the bare mattress.

That was about 24 hours ago and we've worked our way through most of the laundry. If I hurry, I might get everything put back together in time for him to pee on it again tonight.

Day 7 of the SNAP Hunger Challenge!

By Chef Terri

(Said with my best Strongbad impression) It's over!!!

This has been one heck of a long week. Today's menu was a little dull, consisting only of my PBJ breakfast and leftover mango, chicken, and black bean stew over rice.



Dinner...well, I made the mistake I always make when I tried to make fried rice. Allow my failures to be a lesson to you! When using leftover or frozen veggies to make fried rice, it is good to sautee them before you add the precooked rice (this is a great way to use up rice from leftover Chinese takeout, if you have it on hand). The part I always mess up is the part where you need to scramble the eggs on the side and THEN chop them up and add them to the rice. If you don't, and instead just dump the eggs on top of your delicious sauteed vegetables and rice, you end up with...gloppy, sad, mushy rice. I ate a little bit of it for dinner, but couldnt stomach more than I absolutely needed to in order to stop the hunger pangs.

I've been keeping detailled nutrition information for each day that I've been on the Hunger Challenge. Instead of boring you with every day's total, I've averaged the food consumed in the last 7 days and tried to give you a snapshot of what I've been eating vs what I "should" be eating. All of my numbers have come from sparkpeople.com, where they have a great recipe calculator and lots of relevant nutrition and fitness information (plus, it's free!). My goal numbers are listed in parentheses.
Calories:1568.8 (1730-2080)
Total Fat: 60.2g (44-70g)
Saturated Fat: 16.11g
Cholesterol: 343.1mg (less than 300mg)
Sodium: 2714.9mg (less than 2300mg)
Potassium: 2439.9mg
Total Carbohydrates: 192.8g (223-322g)
Fiber: 31.4g (20-30g)
Sugars: 28.7g
Protein: 77.9g (60-173g)

I fell short on my caloric goals, overshot my cholesterol and my sodium levels, but managed to get enough fiber and protein to help keep me going. My carbohydrates were also below where they should be, and I should be aiming to the lower end of the fat spectrum. However, the only reason I KNOW any of this information is because I have reliable access to a computer, knowledge of a website where I can gain this information, and education to understand what the numbers actually mean. Most Americans, whether or not they are on SNAP, don't have these sorts of luxuries. To compare, here is the caloric information for 2 McDoubles, 2 small french fries, and a large Coca-Cola from McDonalds. All of this information was located on their website. Again, my goals are in parentheses alongside.

Calories: 1560 (1730-2080)
Total Fat: 61g (44-70g)
Saturated Fat: 20g
Cholesterol: 130mg (less than 300mg)
Sodium: 2180mg (less than 2300mg)
Total Carbohydrates: 209g (223-322g)
Sugars: 99g
Protein: 50g (60-173g)

It is pretty devastating to compare what I could have bought for approximately $5 a day to what I worked really hard on to feed myself for $5 a day. It is true that SNAP money does not work as currency at fast food restaurants, however, it does work at most convenience stores and dollar store sorts of establishments. This means that it is far easier to access cheap, minimally time consuming calories for my shopping dollar than it is to work so hard to get my needs met through a lengthy process in the kitchen. I cannot express how frustrating it is to know that, and to know that most people in this country don't know enough about basic nutrition to understand why the brown rice and beans keeps me feeling fuller for longer, even if it has the same calories as the large french fry.

At the end of all of this, I wonder what the purpose was. I know several friends of mine have been amazing and have given me tons of support, encouraging me to succeed when I could have easily cheated or fallen off of my task. But what else are we doing? Are we talking to the people we know and love about what they're eating? Are we doing so in a kind and compassionate manner?

How can you make a difference in someones life? I took this challenge to help broaden my understanding of the struggles people on SNAP face, and I never expected I would learn so much...but it isn't enough. I'm talking to people more about the food they're eating. I'm donating higher quality food to my local food pantry. I'm continuing to work with an organization that thinks it is of vital importance not just to provide food to the hungry, but to provide HEALTHY food to the hungry while we strive to end hunger in our community.

Go do something today. And tomorrow. And the next day. I'll be right there cheering you on.

Day 6 of the SNAP Hunger Challenge!

By Chef Terri

Oh man, oh man...only 24 hours left. I can do this. I totally got this.

This morning was pretty exciting, as it was the only day this week I was able to have something OTHER than PB&J for breakfast. I also managed to feed my partner off of this meal, so that was really awesome! I scrambled up 5 eggs, a quarter cup of cheddar cheese, and 2 cups of spinach with a little bit of salt and pepper and served it with toast and jam on the side. The thing that saved the cheese from being "not enough" was adding it just at the end, right before the eggs were done. That way, I could still SEE pieces of it in the eggs, which helped me perceive its taste better. It really is the little things, like choosing extra sharp cheddar cheese for its extra flavor, that have made it easier to get through the challenge.



Since breakfast was really more of brunch, I only ate a handful of tortilla chips and PB&J for lunch, which wasn't too bad. It held me over until dinner, and inspired me to come up with YET ANOTHER way to use my black beans to fill my belly. This time, I used my lime to pep up the flavor a bit.



1/4 C of onions, finely diced
1 t of vegetable oil
1 1/2 C of black beans, cooked
1/4 C of water
1 Roma tomato, diced
Juice of half a lime
1/2 t salt
1/4 t black pepper

Sautee onions in vegetable oil for 3-5 minutes or until tender. Add black beans and water, and using a fork, mash approximately half the beans in to the water to cook. Allow to boil, thickening the water slightly, and add tomato, lime juice, salt and pepper. Serve with a fork, or tortilla chips!

By eating mine with a few tortilla chips, I got extra crunch and flavor, but I was otherwise happy wolfing this down with a fork.

It was odd tonight, going to a party where my friends were serving delicious cheeses and taco dip (one of my favorite things) and all sorts of other edibles, and having to turn them down in favor of a glass of water. It definitely limited my time at the party, as I knew that in the battle of wills with the cheese platter, I would eventually lose. On one hand, I am thrilled and delighted that tomorrow marks the last day of my hunger challenge. On the other, I feel more sad and frustrated than ever for the people for whom this isn't just a week, or who don't have a choice to stop doing this at any time. I'm debating trying to raise money as well as awareness after this week is over, something tangible I can give to my food bank and feel like other people shared in too. You've all been so helpful to me through this, do you think we could reach out and help a few other people in need too?

Day 5 of the SNAP Hunger Challenge!

By Chef Terri

Today was...not at all easy.

As I said, I had my wonderful friends ben and Nadja in from Champaign last night, and I woke up fairly late in the morning. They had a craving for Ethiopian food, so we headed out right away to Demera, my favorite place in the city. I had been really set on sticking to the challenge though, so off we headed with my partner and my roommate...and my PB&J. It was really not fun (for most of us, I assume) to sit there and not eat while they all scooped up delicious bites and my stomach rumbled. But the conversation was great, the people were better, and at least I got some free smells out of the deal!

Lunch was kind of a hastilly cobbled together affair. Half a cup of salsa, 3 oz of tortilla chips, a tomato, and a one ounce hunk of cheddar cheese was enough to fill my belly up this time. It was actually kind of nice to be able to munch idly on the tortilla chips while I read my book, lazing on the couch with my partner. It struck me then how many activities I engage in on a regular basis that center around, or at least involve, food. I go out to eat with friends a lot, sharing many plates of different foods, passing them around and telling stories. When I go to the movies, there is ALWAYS popcorn. If I'm spending a lazy afternoon reading, I love to have some animal crackers and a cup of tea. When I was reading, I realized I hadn't had my daily cup, and that had contributed greatly to my headache and overall sense of annoyance. One large cup of tea later, I was feeling much better than when I initially embarked on this blog post.

During the hunger challenge, I've had to change the way I socialize a lot. It would feel really isolating to me after a long period if I had to keep turning people down for meals out, or couldn't invite people over for a home cooked meal. In some communities/groups, SNAP is already a somewhat stigmatized label, something that people take to mean that you are lazy, or somehow couldn't manage to make ends meet through the good old American concept of "pulling yourself up by your bootstraps." I cannot stress enough that the people I have met through my work who are on SNAP, the friends and family I have had that have spent time on SNAP, are NOT lazy. They are not reaching for a handout. This is a supplemental program designed to help people that are in serious need. I'm so grateful that it exists, because without it, some people I love very much would be faced with some (even more) frightening choices. There have been brief periods in my life that I could be defined as "food insecure" (something one in six people in Cook County share), and without the safety net of SNAP, I could have gone without food.

My roommate and my partner went out to the local pub for dinner, thankfully sparing me the unpleasantness of having to watch them eat and sip my water. I used a little bit of culinary know how to make myself something rib sticking and filling for dinner, even though I wasn't particularly hungry. I knew that since I was going out to spend time with friends later, I'd want the food in me now. By caramelizing the onions, I was able to change their flavor a bit, make them very sweet, which was a complement to the nutty brown rice and the bright spinach.

1 T of oil
1/2 C of thinly sliced onions
3 T of water
1 1/2 C of precooked brown rice
1 C of spinach

Over low heat, cook the onions until golden brown and sticky (approximately 20-30 minutes). Splash 3 the water in to the skillet to scrape up any of the tasty brown bits from the bottom of the pan and add the rice until just heated through. Pile the spinach on top and stir to incorporate. Season with salt and pepper to taste.



By not continuing to cook the spinach after adding it to the hot rice, I allowed it to retain some of its crispness and all its bright green color. The caramelized onions were a different shade of brown than the rice, which added some variety to my bowl as well. Eating on a very limited budget is challenging, but this dish provided a lot of color and texture and flavor for very little money or time spent in the kitchen.

Day 4 of the SNAP Hunger Challenge!

by Chef Terri

I am out of exciting things to write about PB&J. Just know that I had it for breakfast, again, like I do every weekday even when I’m not on the challenge, and it was still kind of weird because of the high fructose corn syrup jelly. It’s tough to pass up the stuff I know I love in the door of the fridge every morning.

Lunch, on the other hand, was AWESOME! Even though it was just leftover beans and rice with some shredded cheddar on top, I can’t even explain the way I felt after getting to eat enough food that I felt like I didn’t want to eat more food. Americans tend to have a problem paying attention to their bodies and noticing when they feel satisfied vs when they feel stuffed to the gills. By ignoring those crucial signals, we tend to overeat. Here are a few tricks I’ve had to start using over the last few years in order to eat slowly and listen to what my stomach is telling my brain. (Hey, after 7 years in professional kitchens, you learn to eat whatever you can, whenever you can, as fast as you can!) These are also generally good tips to actually learn to enjoy the food you DO get to eat, as opposed to wolfing it down and still feeling dissatisfied.

1.) Turn. Off. The TV. By playing music, working on the internet, eating through your lunch break every day at the office, watching a movie, AND trying to check our cell phones, we take all of the focus off of the food itself. Remove distractions that are not related to other human beings actually sharing the meal with you.
2.) Eat off of a plate, at a table, with silverware. Even on nights when I order Chinese takeout, I pour it on to an actual plate and eat it with my own chopsticks, at my table. By pouring your food on to a flat surface, instead of eating it out of a carton, your eyes have a better ability to gauge portion. When your eyes say, “Wow, that’s a lot of food!” you’re already on the path to your belly signaling your brain to slow down or stop eating. Even snacks, like potato chips, need to be poured out in to a real dish, at least.
3.) Be hungry for a bit. Not starving, not terribly hungry, just enough. Note what your body feels like in that state. Then give it something very small, like a banana or an apple. Wait 20 minutes. Notice the difference. Eat something again, a piece of cheese or a little bit of chicken. Wait 20 minutes. See how you feel. Eating in small stages, and noting the differences in physical sensation in between each stage is a great way to get acquainted with the sensation of being satisfied.
4.) Go to the bathroom. In the middle of your meal, get up, go to the bathroom, and come back. Breaking up your meal even by a few minutes gives your stomach crucial time to get word to your brain that maybe an extra sandwich isn’t the best idea.
5.) This last trick might sound a little silly, but it’s worked for me. When eating food, even if it’s a grilled cheese sandwich I’ve made a million times, I try to think of a new word to describe it. By forcing my brain to think about something other than “Put the food in your mouth RIGHT NOW,” I have to play a game in between bites, really savoring each taste and texture so that I could describe it. My goal is to be able to describe what I’ve eaten in so many rich, colorful words that even someone that has no sense of taste can understand what I had.

Dinner was a fun experiment in how to make beans and rice a little bit more exciting. I still have a large part of my onion remaining (let’s hear it for supermarkets that price produce by piece, not by weight, because otherwise that onion would have cost me a pretty penny), and a mango, so I combined those, some beans, water, canned fire roasted tomatoes, and my last chicken breast in a pot and made a tasty stew. By ladling it over a bit of rice, I made it even more filling, and this actually meant that my partner and I BOTH managed to eat this for dinner and feel satisfied! Pretty sweet deal. I wish I had made the beans and rice earlier in the week, as I now have a bit of food I can nibble on that isn’t part of my plan.

I had forgotten until yesterday that I had two really awesome friends coming in to town this weekend. I panicked for a little bit, wondering how I was supposed to feed them and take care of them on this plan. Now, I think Im just out of luck with it comes to providing dinner for them on Saturday unless a miracle happens and the Food Fairy deposits something in my fridge, but I’ve got some creative plans for brunches for two days. Stay tuned and see if I can manage to create a total of 29 meals on a $35 budget!

Day 3 of the SNAP Hunger Challenge!

by Chef Terri

Today has been a bit of a mixed bag. On one hand, I woke up with a nasty headache from low blood sugar. This meant I got kind of irritated because I couldn’t adequately explain my calculation methods of costing to people. For example, while some people believe that they can calculate their food cost just by saying that a sprinkle of dried oregano would only cost a cent or two, I think that the initial cost for a container of spices or herbs ($3-$6 per jar) would be too cost prohibitive on a SNAP budget. I don’t believe that most people in Chicago on SNAP, or most of Cook County have the ability, time, or space to raise an indoor herb or vegetable garden. I don’t think that most people in Chicago on SNAP have the access to grocery stores teeming with “free samples” that so many people are encouraging me to take. I don’t think most people in Chicago on SNAP have the ability to comparison shop, coupon clip, or afford the initial cost of bulk purchasing. I don’t think most people in Chicago on SNAP are able to purchase a week or more worth of groceries at a time, as carrying them home on public transit is such a challenge.

Even more frustratingly, I don’t believe most people in Chicago have the education or access to be able to make healthy food choices, prepare food in ways that retain or enhance inherent nutrition, or try things they have never have before.

For example, I know that if I put peanut butter in a skillet with a little bit of water, salt, pepper, and onions, it will make a palatable sauce. Most people look at peanut butter only as a sandwich condiment or a dessert item. Salsa can be a flavor adding agent to salads, or scrambled in to eggs. It doesn’t just go on chips. The list goes on and on. There are even tricky ways to cut food so that it makes your eye think there is more than there is on the plate. But do most people on SNAP know these sorts of things? Do they have the time or access to learn them? Probably not.

On the more cheerful side of things, people have been really supportive. My coworkers are really nice and feel guilty that they’re all going to go out for lunch today and have a root beer float as a snack and I can’t. My partner has encouraged me over and over again, reminding me that the whole point of this challenge is to gain more than just sympathy for people in need, but to have a chance to gain even a tiny bit of empathy for their suffering. My family has reminded me to use MY history, MY inherent privileges (such as having a car with which I can access many grocery stores, living in a neighborhood that HAS many grocery stores, being educated as a chef, and being brought up in a middle class household that could afford to expose me to different foods as a child, to name a few) to help educate and reach out to people that don’t have what I do. The text messages throughout the day from friends and loved ones just saying that they’re excited reading these updates, and proud of me, also really help. It makes me sad that a lot of people on SNAP probably aren’t as lucky as I am, specifically when it comes to how great my support system is.

Today’s menu worked out pretty well for some reason. Maybe it was just out of desperation, but my PBJ sandwich seemed to last longer in to the day today than it had yesterday, so I didn’t start feeling too hungry for lunch until about 10:30, which was snack time. I had an apple and a one ounce piece of cheddar cheese, that made me able to stay full until lunch rolled around. In order to stay as true to the challenge as I could, I made my lunch last night threw it in the microwave. The trick I used to keep the chicken breast juicy was twofold. First, when I cooked the chicken, I cooked it in a little bit of vegetable oil on one side to get some color, and then when I flipped it over, I added water to the pan about halfway up the chicken breast. Then, I put the chicken in a 350 degree oven for about 7 minutes, until my thermometer (ESSENTIAL to not overcooking things like a thick piece of chicken) told me it was 160 degrees. I took it out of the oven and let it sit on the stove, resting in the juices, for 5 more minutes. By letting it rest, the muscle fibers in the chicken had a chance to retain their natural juices instead of slicing it right away and letting all the flavor run all over the board. Then I sautéed my frozen veggies in the same pan so that they could pick up some chicken-y flavor. To reheat the chicken, I set the microwave to its lowest power setting (I just want to warm my food up, not cook it much more) and added about a teaspoon of water to the Tupperware before zapping it for a minute. By keeping the lid loosely closed, it retained steam, which heats all the food very quickly. It still dries out a little from being in the microwave, but by using low power and shorter times in the microwave, it was still pretty tasty.

Dinner was downright exciting. I had intended to have beans and rice yesterday but didn’t remember to soak my beans in advance, so I thought I was out of luck and had to change my plans. Upon further research, I found that I could have cooked the beans without soaking them, but that is neither here nor there. I cooked them in water with onion, salt and pepper for about 60 minutes, boiling and then reducing to a simmer. Alongside, I cooked the brown rice in water as well, but added about a half cup of salsa. Sadly, the beans were done about 30 minutes after the rice, but my patience didn't last that long...so I mixed the beans and rice together, and got a complete meal with lots of fiber, protein, and carbohydrates, and...vaguely chewy beans. The squirt of lime juice over my bowl at the very end was delicious. I wish I’d had a spicy pepper to add to the mix, or even some cumin or vinegar to add to it, but next time.

Now my roommate is trying to tempt me with canned cinnamon rolls he made. I can't justify it. I can't justify it. I'll just enjoy the smell. Or something...

Day 2 of the SNAP Hunger Challenge!

By Chef Terri

Spinach and Chicken Salad with Hardboiled Egg, Onion, & Lime

Approximate breakdown of my lunch cost today:

$0.60 for the 2 oz of chicken I reserved from the breast I sautéed last night

$0.12 for the egg I hardboiled

$0.67 for the 3 oz or so of spinach

$0.10 for the sliced onions

$0.14 for the third of the lime juice and zest I used

Approximately $1.63 total meal cost

Approximately 154 calories in the meal

Approximately $.01 per calorie consumed

In an average 1 oz bag of potato chips, there are 160 calories. Those potato chips require no time to boil the eggs, no preparation of product, no saving chicken from the night before. The average 1 oz bag of potato chips costs $0.33 at Jewel, meaning it would cost even less than the $.01 per calorie that my salad cost me to consume. Now, of course the potato chips don’t provide much of any of the nutrients I’ve eaten here. Spinach is high in iron and vitamin C, I gained lots of tasty protein from the chicken and egg, and lots of flavor from my lime and my onion. In total, I was able to eat almost 4 cups of total food volume, which is far more than the heaping cup of chips would have taken up in my stomach. However…I’m still really, really hungry.

Last night was really rough for me, sleep wise, and I decided to have an extra bag of hot tea this morning. Since I usually only use one tea bag (and get two cups of tea worth out of each bag), I had a total of 4 cups of tea today on a very empty stomach. My snack of a banana, while super tasty, was less filling than my baby carrots were yesterday, and didn’t do anything to slow the absorption of caffeine in to my system. I think that by increasing my caffeine consumption while not increasing my food consumption (instead, decreasing it sharply from yesterday), I’ve also increased my sense of jitteriness and overall irritability. I am wide awake, but none too pleased about it.

Dinner was easy to prepare, and very flavorful, but not particularly filling. Two eggs scrambled with salsa, and a piece of toast with an ounce of shredded cheddar cheese.

I upped my overall consumption of vegetables for the day by using the salsa, but I’ve already exceeded my total recommended consumption of egg yolks for the week, boosting my cholesterol consumption significantly. We know that there is an overall connection between poverty and ill health, and poverty and obesity, which I’ve certainly begun to understand more personally in the last 2 days. I’ve lost three pounds in the last 48 hours, but I know that if I keep up this intensely calorie restricted method of eating, my body will attempt to store everything I eat as fat, increasing my likelihood to suffer from obesity related illness. While I’m struggling to eat healthily this week, I’m already hearing the sirens call of just eating the whole bag of tortilla chips for dinner. I could have purchased a significantly greater volume of food, things like potato chips and ramen and soda for the same amount of money as I spent on the fruits and vegetables and lean protein I bought this week.

Just thinking about the food I can’t eat today is making me grumpier, but simultaneously more grateful for the luxuries I do enjoy. I can’t imagine being this hungry and not having my laptop or a good book to distract me. If I had to be this hungry in between working two or more jobs (as lots of people on SNAP do) or while raising children (again, a large percentage of SNAP participants have children), I don’t think I could manage it.

Day 1 of the SNAP Hunger Challenge

By Chef Terri

Day 1 started bright and early as I fumbled through my kitchen to make my PB&J. I skipped past my Skippy Natural peanut butter and jumped right in to the peanut butter I could afford this week, loaded with partially hydrogenated fat. The jelly was...of an upsetting consistency. While it's first ingredient was, in fact, strawberry, it was followed up with high fructose corn syrup, corn syrup, and pectin. I have become much more accustomed to 100% fruit spreads, and stuff with high fructose corn syrup just moves differently. But, I measured out my portions, spread them on my bread and ate it gratefully because I knew I wouldn't have any food til much later in the morning if I didn't.

Off to work, where at every turn, there was food offered to me. Today, it wasn't too hard to turn it down, although when it came time for my midmorning snack, I certainly had a craving for something more substantial than baby carrots. However, it was exciting to taste how great, how crisp and fresh the carrots were because I was genuinely hungry. It also made me happy to think of the fact that I'd only spent 49 cents on the whole bag that might get me through most of the week.

Lunch was a bit of an adventure. I realize that I have options available to me in preparing my lunch that most people wouldn't, given that I work in a professional kitchen, but everything I did could have been done in advance and still tasted alright. I toasted my whole wheat bread and shredded my cheddar cheese, melting it on to one piece of toast. Then I sliced up my tomato (handy trick for tomatoes on sandwiches, always make sure to put the tomatoes on the bread AFTER a protective element like cheese or lettuce. If you put it right on the bread, it gets mushy) and added two fried eggs. A little bit of salt, and the sandwich was good to go! The significant problem was the fact that I had put my tortilla chips in the same ziploc bag as my bread. This meant that the moisture from the bread went in to my chips, making them chewy and soggy. My go to trick for reviving them was popping them in a 300 degree oven for about 10 minutes, restoring most of their crunchiness. Paired with salsa, it made a great meal.

Dinner was a new recipe adventure! I'm a big fan of big flavors, but without any spices to work with, I had to get pretty crazy inventive. It turned out alright, if not very attractive.

1 chicken breast, chopped in to bite sized pieces
1 t vegetable oil
1/2 C diced yellow onion
2 T diced tomatoes and their liquid
1 T peanut butter
1/2 t salt
Pinch of black pepper
1/2 t lime zest

Heat a nonstick skillet over medium heat with vegetable oil. Once heated, add diced onion and sautee for 2 minutes, until beginning to turn translucent. Add chicken and tomatoes, sautee for 3 minutes further. Spoon in peanut butter, salt, pepper, and lime zest, and stir to incorporate. If the sauce is too thick, add a tablespoon of water at a time until it reaches your desired consistency. If too thin, allow to cook for 1-2 more minutes until it thickens up. Serve immediately.

There was a LOT of flavor in this bowl, although if I had my way I would have added a bit of fresh parsley at the end and some lime juice to brighten the sauce, but it was awfully tasty. And being able to turn out in under 20 minutes after a day of work? Not too shabby if I do say so myself. I'll have to add nutritional facts of my days menu tomorrow (I forgot the tally at work), but it wasn't too bad. By drinking plenty of water, I was able to keep a lot of hunger pangs at bay. We'll see how tomorrow goes!

Shopping Is Hard (Or: Why Nobody Looks Happy At The Grocery Store)

By Chef Terri

So, after a long weekend spent out of town, I hit the ground ready to do this Hunger Challenge. I was frazzled, low on energy, and felt like this would be a great time to do my shopping for the week, as...well...it really was the only time I had. Armed with my previous weeks research on comparing food costs (which I realize that most people on SNAP would not have the time to do, and only served to frustrate me further), I headed to Aldi with $35 in my pocket. I had made a grocery list that corresponded with my menu for the week (again, something most folks on SNAP don't find themselves with time to make) and resolved to do the best I could to get everything on it, even the stuff in the "Optional" column.

At Aldi, I purchased:
1 paper bag: $.06
2.42 lbs of boneless, skinless chicken breasts: $5.35
1 jar of creamy peanut butter: $1.69
1 can fire roasted tomatoes: $.89
1 jar of strawberry jam: $2.19
1 bag of white tortilla chips: $1.19
1 dozen eggs: $1.49
2 large mangoes: $.98
1 large container of vegetable oil: $2.69
1 loaf of whole grain white bread: $1.29
1 8oz block of sharp cheddar cheese: $1.99
1 bag of baby carrots: $.49 (my best bargain of the whole bunch!)

Grand Total (after tax): $20.77

Then it was on to Target, where I knew there were a few things I could buy at a cheaper price. Interestingly enough, although ALDI and Target are immediately adjacent to each other, the shopping experience is wildly different between the two. While both were brightly lit and well labeled, it was very clear that Target had more money to invest in a "pleasant" shopping experience with wide lanes and spacious product layouts, whereas Aldi seemed focused on getting you the most variety and the greatest number of items in the smallest amount of space. Both have their advantages, but it was interesting to jump so quickly between the two spaces.

At Target, I purchased:
1 9oz bag of spinach: $1.99
1 bag of 4 red tomatoes: $1.49
1 gigantic yellow onion: $.79
1 lb dried black beans: $1.24
1 jar medium salsa: $1.89
1 bag of brown rice: $.79
1 box of 24 black tea bags: $1.22 (nobody would have loved me this week if I didnt have any caffeine, promise)
2 Braeburn apples: $1.28
3 bananas: $.72
1 lime: $.42
1 bag of mixed frozen vegetables: $1.04

Grand Total (after tax): $13.16

Total From Both Trips: $33.93

We'll see how far this stretches, especially as I have to rustle through my car to dig up the loaf of bread that somehow escaped on my trip home. If I had actually lost that loaf of bread and been on SNAP benefits, that would have ruined my meal plan for a whole week. Its pretty scary to know that a loaf of bread can really be the thing that makes or breaks a weeks worth of food, but when every calorie counts, that bread would be sorely missed.

SNAP Hunger Challenge 2011 Kickoff Post!

(Hi! I'm Terri, and Michelle has been kind enough to let me hijack blog space for the next week and a half or so as I get geared up for the Feeding Illinois SNAP Hunger Challenge 2011. Read on!)

I am a person that gets angry and choked up when I don’t have any change in my pocket or room in my paycheck to donate to people less fortunate than me.

I am a person that gets angry and choked up when I hear statistics such as 1 in 8 people in Cook County, Illinois are “food insecure.”

I am a person that gets angry and choked up when I am told by a child that their lunch today was a bag of potato chips, and they don’t know what they will have for dinner, if anything.

I was the kind of person that let my anger and frustration stop me from doing something about these sorts of problems, before I took my current job at the Greater Chicago Food Depository. Working at the food bank for Cook County has not only given me a steady paycheck in an unsteady economy, benefits in a country full of more sick people than healthy, and amazing coworkers who are also motivated by these issues, it gave me a cause. I know that when I get up at 5:30 in the morning, stumbling bleary eyed and grumpy to my shower, that I *have* to get up. There is more than just my “job” to get done today. My job is making sure that every person that shows up to a soup kitchen, a food pantry, an after school program, a shelter, a church, or a community center affiliated with the GCFD gets enough food to fill their bellies. My job is teaching people job skills so that they can find work in this challenging economy. My job is ending hunger.

Enough with the lofty ramblings, let me get to the nuts and bolts of who I am, what I do, and why you should care about what I’m doing here. My name is Terri, and I’m a chef instructor at the Greater Chicago Food Depository. My program is called Chicago’s Community Kitchens, and it is a job training program that teaches unemployed and underemployed adults how to get (and keep) an entry level job in the foodservice industry. The food that we, along with an amazing production team that I couldn’t live without, make every day goes to serve after school meals at hundreds of sites around Chicagoland. If it weren’t for us, teachers, chefs, and students, children wouldn’t have a hot meal for dinner.

The GCFD is part of a group of food banks in Illinois called Feeding Illinois, which is part of a larger organization of food banks called Feeding America. In September, Feeding Illinois organizes a SNAP Hunger Challenge. All of the details of this challenge can be found on their website at http://blog.feedingillinois.org/take-the-challenge , but I’ll break it down for you here. The official challenge runs from September 18^th-24^th, but I’ll be participating from the 20^th-26^th for personal reasons. For 7 days, I will be endeavoring to live on an average individual’s amount of SNAP (Supplemental Nutrition Assistance Program, formerly known as Food Stamps) budget. This is a grand whopping total of $5 per person, per day. The only pantry staples I am allowed to utilize in this challenge are salt, pepper, and water. I can’t accept food from coworkers, friends, family members. I have to try and get food that is of adequate nutritional value to keep me healthy and sane throughout the week.

I have my doubts. I’m fairly certain that even with my culinary degree and 7 years of kitchen experience under my belt, I’m going to be pretty limited on what I can produce that will satisfy me either physically or mentally. I love to experiment with new ingredients, and I rely heavily on my well stocked pantry to liven up kitchen staples. I predict long moments spent staring at a skillet, whimpering, “What do you *mean,* I don’t have an onion to put in my dinner?” Living above a grocery store, and working in a professional kitchen will also present plenty of opportunity for cheating and mindless eating. However, I’m promising you (the faceless hoards of the internet) that I’m going to stick to this. I am going to try and create recipes that are affordable, accessible, and simple for people who do not have the option to order a pizza after a long day of work. I am going to try writing about it, talking about it, explaining what I’m doing to anyone who will listen even if I’m hungry and tired.

I’m going to do this because I can. I’m going to do this because too many other people don’t have any other choice.

Here are a few statistics about hunger in Cook County, summarized from research done by the GCFD and published in May 2010. The entire fact sheet can be found at: http://www.chicagosfoodbank.org/site/DocServer/HungerStudy_2.10.pdf?docID=5981.

- Each week, the Food Depository and its member agencies serve 142,400 men, women and children.
- 47 percent of households say they have to choose between paying for food and utilities
- 60 percent of food pantries are completely volunteer-run and have no paid staff

Neighborhood Outreach

After reading yet another heartbreaking story of an autistic child wandering off and dying, I realized it was time to do something about Bear's recently increased attempts to break out.

(Q: How do you know you have an autistic eloper?
A: You seriously start wondering if a retina scan door lock might be enough to keep 'em in the house.)

We had another close call a few day ago, when he slipped out the (so tricky to open we hadn't worried about it much) garage service door.  Thankfully, in the minute or two it took me to notice he wasn't in the room any more he got distracted by his Big Wheel and a crisis was averted.

And then there was a couple of weeks ago, when he decided he was going to the park wearing nothing but a charming pair of Thomas underpants.  Luckily I was right there to intervene (read: throw him over my shoulder and carry him back in screaming) because it was one of his deeper neurological "nobody's home" spells, and he was completely unresponsive to my voice.

I read a post several months ago by an autism mom whose young son had eloped, and she realized as she frantically searched the neighborhood that she didn't really know any of her neighbors and when she asked them to help her look, they didn't fully grasp the seriousness of the situation. (Kicking myself for not being able to find the post to backlink.)

Thankfully that story had a happy ending, and even though we didn't have an autism diagnosis yet I understood I was in a similar situation and took two lessons from this mom who is clearly more experienced than I:

1) Teach Bear to respond to "Say "here I am!"" because he doesn't always respond to his name (it works surprisingly well and has stopped several 'omg where did he go' heart attacks in progress)

2) Talk to my neighbors

I realized that Trick or Treating next month is the perfect opportunity to chat with a number of neighbors all at once.  But I also realized that just talking about it wasn't enough, I needed to give them something concrete.  Something that answers the sincere question "what can I do to help?"

Which brings me to this...

I used one of the free postcard templates at the online printing resource Vistaprint.com to create it.  It's fast, easy and quite affordable.  (Try vistaprint.com/twitter for more savings, I got an enormous discount that way).

The plan is to hand deliver these to specific neighbors when I take Bear Trick or Treating.  We are being quite selective about who gets them because, obviously, they're full of our private contact information.

I think this will be an effective strategy for us because we happen to be blessed with a good number of friendly neighbors (most of whom are either police officers, parents of young children or both) that we feel we can trust.

I'm very interested in hearing what you think about this plan, and if any of the more experienced moms have other ideas for me to try?  We've already taken to heart the suggestion to information the local police department that he's an elopement risk and will be doing that soon.

***

UPDATE:

The cards were a huge hit!  The neighbors were warm and receptive, and several expressed gratitude at having concrete direction on what to do in case they did see something that concerned them. 

I should note it is important to practice your 10 second spiel before you go out trick or treating with the cards.  The world being what it is, people were very guarded when they saw me with something in my hand, the obvious assumption being I was selling something. I learned not to pull the card out of my pocket until the last second, because then instead of it being the thing that made them defensive it became the answer to the question they were about to ask.

Yes, it's a serious topic, but I kept it light and friendly and quick.  Some of them asked questions and that was great, but I didn't want to be a buzzkill so it was also perfect to have a 3 year old tugging at my arm to go ring the next doorbell. 

Here's more or less how it went:

"Hi! I'm Michelle and this is Bear, we live right over there (*point*).  Bear has autism, and you might know that a lot of kids on the spectrum wander off and get lost.  We wanted to let our neighbors know if they see him out alone to please call us right away - here's a card with our contact info.  Happy Halloween KThxBye..."

If you have an eloper, I think the potentially huge benefits of making these cards is definitely worth the small cost and moderate effort.

***

Now there's a step by step tutorial with links to free templates:
Neighborhood Outreach Part 2: Wandering Awareness Cards Tutorial

***

This is my pin of this post on my Autism Visual Aids & Resources Pinterest board.

Sensory Activity: Pit Ball Wading Pool

This is one of Bear's absolute favorite sensory diet activities. I only get it out every couple of weeks months because, well, that's about how long it takes to find all the balls under the furniture.

I wanted to share this one for several reasons:
- it's cheap
- it's easy
- it's versatile
- it's fun

Supplies
Blow up wading pool (we got this one for $5 on clearance)
Pit balls. Lots and lots of pit balls (about $10 for bag of 100 - he got 4 bags for his birthday)
Pile of random blankets (to soften the landing zone)
Bike pump (optional, but highly recommended)

Pumping the air to blow up the pool offers great resistance, and he thinks it's fun. Plus, it seems to be organizing and I think it helps keep him from getting overstimmed in the balls.  (Note the layer of blankets lining the floor under the pool.)

 

I couldn't get a picture of the next step because my hands were full with the task - he lies down in the empty pool and I pour the entire bin of balls over him.

The next bit is self-explanatory...

 

Note: This really is 400 pit balls. They don't go nearly as far as you'd think!

Once he's gotten the first round of jumping out of his system and is heading towards overstimulation, he starts throwing balls.  We decided to channel this impulse into something constructive.  He's got some motor planning issues that are pretty noticeable in the ball throwing area, so we set up the bin for target practice.

 

Once he gets ball throwing out of his system, he likes to experiment with the bin itself. I've got video of him scooting down the hall like a turtle with it : )

 

 

After he exhausts all the play options for one session, he's calm and organized enough to sit still and smile for a photo!

 

Negotiating With Myself

It's official, then.  A real life autism specialist said that Bear qualifies for the all access secret pass code to Early Childhood Land.

Which means.... I should probably do something about that. Seeing as how I've been kvetching for almost a year that our school district said at his initial IEP meeting that they couldn't grant him the services he really needed without that diagnosis.

But.  Here's the thing.  In the meantime I interviewed a bazillion preschools, since it didn't look like I could get him into the special needs preschool.  And he started preschool this week.  And like every single other 3 year old preschool program I talked to, it's two mornings a week.

And the ECE program?  Five days a week. Which seems excessive for a 3 year old.

But I appear to be the only one who has a problem with this. And my main problem appears to be that, after nearly 2 years of being on the constantly overscheduled therapy appointment treadmill, I was really really really looking forward to a "normal" 3 year old's schedule of preschool 2 mornings a week.

Two mornings a week, I might add, that did not require me to be present.  (Can I get a hallelujah?!)

The other thing, of course, is the sheer terror I feel at the idea of trying to get Bear anywhere at any set time every single morning.  Because dealing with first morning Bear is just like opening the Christmas gift from your Grandma who really likes to craft.  You never know what it's gonna be, and you have to adjust your reactions on the fly.

Some mornings, it's gorgeous handmade quilt in my favorite colors I will cherish forever Bear.
And some mornings, it's puff paint on cheap turtleneck, put it on so I can take your picture Bear.

(No, I am not making those up.  And I have the photos to prove it.)

Currently, we have to leave for preschool by 8:30 or be late.  I've been allowing 90 minutes to get him ready, and we were still late the first day because he couldn't decide where he could sit that would make it acceptable to put his shoes on.

And at that point I'd already bribed him with a chocolate donut to get his pants on.  Forget about brushing hair. Or teeth.  When he wakes up that disregulated, I'm happy if we achieve "not naked."

And, of course, there's the whole "but this was going to finally be our normal time together" argument.
I made a deal with myself that we'd take this semester for ourselves and see about securing a spring semester ECE spot.  I can deal with that.  He'll have turned 4 by then.  And that will still give him a year and a half of special needs preschool to prep him for Kindergarten.

But everyone's telling me, in one form or another, to suck it up.  So there's that.  Plus, there are two more complicating factors I was recently forced to consider:

1) His new baby brother is due within days of when he would start spring semester in the new school with the new, every day schedule.  I can't possibly ask him to adjust to both things at once.

2) The school called a few days ago to follow up on his suspended IEP. I mentioned I was going to call soon because of the recent autism diagnosis, and they fell all over themselves to be helpful.  At which point I found out if they grant the service they won't hold a spot for spring, he'd have to start right away.  (I told them the truth - I'm still waiting for all the medical reports before calling the IEP meeting.  She gave me until October 1st to get back with them.)

So. I made a list of pros and cons to starting ECE as soon as possible to help me figure out what to do.


Pros for Bear
1) It would give him plenty of time to adjust to the new school and schedule before he has to adjust to his new sibling.

2) It's exactly what all of his doctors and therapists think he needs.

3) I heard from another mom with a son in the program that the daily routine of ECE helped create improvements across the board, especially at home.

Pros for Me
1) I could rediscover what it's like to do client work in actual daylight.

2) I could rediscover what color my floors are under all those dust bunnies and dog prints.

3) I could rediscover what the inside of my gym looks like.

4) I could rediscover my muscles under all this fat.

5) I could rediscover how to use my stove.

6) I could actually get some writing done.

7) I could be less stressed, less pressed for time and more there for Bear the rest of the day.

8) I could schedule something like a pap smear without hours of frantic phone calls trying to get a sitter.

9) It's free.  And the tuition we're paying private preschool sure could be used elsewhere, like the giant pile of medical bills we're about to get now that we started new medical insurance and are in the deductible phase.

Cons
1) I don't wanna.

2) Because it's hard.

3) No. Seriously. It's hard.

4) You want me to put my 3 year old on a bus? By HIMSELF?!

5) Booking doctor and therapy appointments will become a choice between missing school or taking him as an overstimulated, disregulated meltdowny mess after school.  (I know, I know. Y'all already do it.  But again - only 3! I was supposed to have more time!)

I met another mom in OT in the same district with a son the same age - she turned down the ECE placement they offered her because she wasn't comfortable with 5 days a week, and they wouldn't budge to let her do 4 days a week so he could stay in his OT group.  So, I'm not the only one with these misgivings.  Every day just seems like a helluva lot to ask of a group of kids who are probably already booked out the wazoo with therapies.

Obviously, I'm gonna do it.  I just need time to process, mentally and emotionally.  Which, luckily, I appear to be getting in the form of the pathetically slow trickle of the medical reports I need to proceed (so far, I've got 1 of 5).

So, I have until October 1st to call the IEP meeting. That probably puts him in ECE right around his 4th birthday.  I guess I can live with that.

OK Go Rocks Out with The Muppets

LOVE. THIS.

Props to my girl ChemLabGoddess (fellow special needs mom and generally amazing human being) and the always awesome Joe. My. God. blog for tipping me off to this Muppetastic treat.

He Couldn't Wait for It

From the  moment the box arrived from Peace Weighted Blankets, Bear was totally on board with the awesome new addition to his sensory input toolbox nungle binkie collection.

I don't know how we ever got him to bed without it.  He calms down and falls asleep so much faster with just a few minutes of heavy blanket time.

Input Much?

One nice thing is that we can often gauge Bear's neuro status at bedtime based on the sheer number of items he insists on bringing for snuggles.

"All my ammals"

All Wrapped Up

This moment marked the first time he ever verbalized a request for calming sensory input.  He handed me the blanket (AKA "my boo nungle binkie") and said "Mommy, wrap it in a circle."

Needless to say, I was happy to do so.  And so proud of him for taking a step towards self-regulation.

Decisions, Decisions

I first started this post on January 11th, just a few days after Bear started the group speech program grudgingly granted him in an IEP from our school district.  Many of you know I pulled him from that program almost immediately.

I've held back posting the story for quite some time.  Partly because I needed to sort out what Bear needs. Partly because he went through a really rough patch (neurologically speaking) for several months and we were barely hanging on over here.  Partly because I got insanely sick from this pregnancy and switched into survival mode.  And partly because I wanted to re-evaluate what I wrote with a cooler head, because I cannot afford to say something I'd regret later.  This is the school district we have to deal with for years to come, and I am not going to burn bridges for Bear.

So, in a nutshell... here's what happened then, what's been happening since and where we're going from here.

What Happened Then
You may recall my lack of enthusiasm for the circumstances of the group speech program available from our school district.

After the first miserable session I gave it another chance at my husband's urging.  I made myself face the possibility I was overreacting, and that I may come to find it acceptable.  I mean, I fought to get him this service, what on earth was I doing talking about pulling him after a single session?

Bear was off-kilter that Thursday morning, plus had one of his severe shivering fits.  He shakes so hard someone unfamiliar with the situation could think he was having a seizure.  I was loathe to turn him over to the therapists who had clearly not bothered to read his file and seemed surprised at my insistence on explaining his needs to them.  Before they took the group out to the trailer, I managed to grab a therapist and tell her his brain has trouble regulating his body temperature, and to wrap him up in his coat if he started shivering.

This woman looked at me and said "oh, is that what that was the other day?"

Translation: My neurologically challenged 3 year old had a violent shaking fit on the floor in the middle of a group speech therapy session.  In front of two pediatric therapists (one speech, one OT).

And nobody did anything about it. AND NOBODY EFFING TOLD ME IT HAPPENED.

Needless to say, my inner debate regarding whether or not to keep him in this program was over.

The only thing that kept me from snatching him up and running the other way was that, moments before, I'd met another parent with whom it was clear I needed a little time to chat.

I let him go with the group and then talked to the mom I'd just met.  She happened to know how to locate the private OT I'd been trying to track down.  The one who originally evaluated and diagnosed Bear through EI.

How I Ended It
I'm a pretty zen girl. It takes an awful lot to set me off, and I will always always always look for a genial solution. I will likely never be the one in a crowd questioning authority or bucking the system.  And I will never, ever be the one saying anything confrontational.

But the situation with the school has awakened an angry beast inside me... one that wanted to tell them to take their IEP and do rude things with it.

But again, with the burning bridges.

Fortunately(?), around this time Bear had also been having what appeared to be auditory hallucinations.  ("Mommy, the voices are talking.  Mommy, where are the people hiding? I hear them talking.  Where are the voices, Mommy? Help me find them.")

A call to his neurologist got a more serious reaction than I anticipated.  He requested we get a full evaluation from a pediatric neuropsychiatrist at Children's Memorial.  (Took 4 months on a waiting list, but of course we did it.)

In addition to this new concern, we had the collective opinions - in writing, which had been provided to the school prior to his IEP meeting - of his neurologist, his OT and his group OT.  All of which said he needs to continue OT.

(For the record, after meeting him for all of 2 hours one of the school evaluators responded with a relatively snotty "This child does not need OT twice a week."  To which I responded "Honey, you do not know him.")

So. With genuine new concerns and overwhelming professional opinions that he should be in OT, I informed the school that I was sorry, but his neurologist felt OT was his primary need and it just so happened the only Occupational Therapy slot I could secure for him conflicted with the speech program.  (True enough I didn't feel guilty saying it, nor do I feel guilty repeating it here.)

They were surprisingly helpful.  Even gave me the option of either rescinding his IEP (paperwork galore, plus would have to start from scratch when he needed it updated) or simply suspending it for medical reasons. Obviously, we went with a simple suspension.  Which is where it remains, until I figure out where to go next.

Where It's Been For the Past 6 Months
I can't believe how lucky we got.  We managed to get Bear back into with the group OT we'd used through EI and our insurance works there.

We also managed to secure a coveted spot with the great private OT who originally diagnosed him.  I simply adore her (as does every parent I've met who knows her) and Bear has made tremendous progress with her.

I even learned that she made calls on his behalf right after she met him (in Oct 2009) to make sure he got assigned the perfect OT through EI.  I feel like she truly gets him probably better than any other clinician.  I don't think he'd have come this far without her. 

Our beloved OT also wholeheartedly agreed with the pediatric neuropsychiatrist's advice that we find a family therapist experienced with sensory & spectrum kids to help us navigate the challenges of raising Bear.  She said he's one of the most complex cases she's seen in years and she was quite concerned about us finding the right counselor.  Once again, she worked the phones for us and came up with two qualified options.  We met with one for the first time last week, and I felt right away she's a great match for us. I'm dreading the addition of another weekly appointment to our already packed calendar, but we all know it's the right thing to do.

Our Next Transition
Because the school did not qualify Bear for the ECE program (what they call the special needs preschool here), I would have to request a full re-evaluation and hope for a miracle (they kind of told me on the side that their hands are tied without an Autism diagnosis, which we don't have).

Frankly, right now I just don't have the fight in me for another uphill battle.  Plus, I'm incredibly  reluctant to sign him up for a 5 day a week preschool program at 3 years old.  I talked to a dozen area preschools, and the average 3 year old program is 2 mornings a week for maybe 3 hours.  5 days a week feels excessive.

Part of me just doesn't want to give up my baby any sooner than I have to... it's supposed to be a few more years before I have to deal with getting him to school 5 days a week.

Part of me resents never getting to just BE with my kid.  I left a lucrative job at a Fortune 500 company to run a small home business pretty much because I wanted to be at home when my kids were small.  Between OT and group OT and daycare and his ENT re-checks and neurology re-checks and now weekly behavior therapy I can't help wonder when, exactly, do we get to have some fun?

So. I just scheduled group OT to stop at the end of July.  That gives us just enough time to do some long weekends to visit distant family before preschool starts.  Private OT will continue right up until school starts.  Behavior therapy counseling just started, and will continue for 3 months until the therapist goes on maternity leave.  I love that there's a built-in break just when I'll need some time to prepare for having my own new baby.  I suspect we'll be back with her after I recover from the birth, because gawd knows it will probably create a whole new set of behavior challenges we'll need help with!

Where We Go From Here
Bear is registered for regular preschool.  BUT.  And this is a huge but... it's in the same facility that has the daycare he's been going to since he was 15 months old.  They know him. They know me.  They know it may not work and we are all fine with that.

The director (a dedicated professional I respect very much) is even making an exception to the potty training rule for us and allowing me to bring him in pull-ups.

His current teacher (he's in a "daycare" / semi-preschool program that's for kids too old for the 1-3 daycare but who missed the age cutoff for current preschool year) asked me not too long ago if I'd looked into getting him a classroom aid.  So, yeah.  His challenges are potentially too much for a traditional preschool setting.

Moving ahead with a traditional preschool program was an incredibly difficult decision for me.  But I decided to give it a go for a few reasons:

- It's 2 days a week, which feels reasonable for a 3 year old program.
- I can still work in doctor appointments and therapy sessions around a 2 day school week.
- It's in a familiar setting, which will be much easier for him to handle.
- If he crashes & burns, it will provide much-needed documentation to present to the school if/when I request a re-evaluation with the goal of acceptance into special needs preschool.

So. That's that.  I feel I blinked in January and just woke up like some coma patient confused about what year it is.  This has probably been the hardest 6 months of my life.  I've never had uncertainty about decisions haunt me like this.  All I can say is we've done our best for him this year and so far the decisions we made seem to have been the right ones.

I can only hope the choices we've made that will take us through the next 6 months work out as well.