afraid to taste

My son has juvenile diabetes and autism, and he’s afraid to taste things.  Well, he was.🙂

Word to the wise: Do not use the words I’ll never when discussing parenting your children.  As a little girl, I lived by a few rules when it came to eating.  First, we all ate the same thing for dinner (Except when Mom and Dad grilled steak.  In that case, when I declared I did not like steak, they happily fixed me a less-expensive pork chop.). Secondly, I had to taste everything on my plate, even if it looked questionable.  My dad always said, “Your tastes change at least every seven years. How do you know you don’t like it if you don’t try it?”  A college friend once confessed that she’d been such a picky eater as a child that her poor mother peeled hotdogs for her to eat for supper.  At that point, looking over at her skeptically, I said, “I’ll never do something like that for my children.”

Well, that was quite a while before my life included children at all, much less one with diabetes and autism.  Although it is wise to remember that if you know one child with autism, you know one child with autism, most children with autism have at least one sensory system (often more than one) that functions at a significantly heightened or significantly muted level.  Consequently, they tend to avoid or seek sensory stimulation for that system.  Riley’s most obvious issue has always been a heightened auditory system (i.e., she has hypersensitive hearing), and interestingly enough, we learned recently through neuropsychological evaluations that she is much more successful at processing auditory information than visual information. Adam’s visual and tactile systems both appear to be heightened, but the greatest issue we’ve had has been with oral anxiety.  It makes sense.  The human tongue, with its sensitivity to taste, temperature, and touch, employs the function of two major cranial nerves. It is one of the most tactile-sensitive areas in the human body.

Dental appointments with Adam have, until recent months, been a nightmare.  He is so afraid of the sensations he’ll encounter in a dental checkup that it used to take four adults to help him through a minor dental cleaning.  In our years together, I’ve spent many dentist appointments laying on top of him, singing and patting him while he wept hysterically and gave me a “How could you let them do this to me?” look.  Once, the dentist tried to fill a few cavities in her office, and Adam came up off the table (even with the laughing gas) like a cartoon cat—claws out, hair all on end. Brushing his teeth is often still the most frustrating part of our day together because Adam is afraid to open his mouth wide enough for me to brush certain sides of his teeth, and he absolutely cringes over any sort of brushing in the front of his mouth along the gum line.  Whenever I work with him on independence with this, he demonstrates the way he’d like to “brush his teeth” by holding his vibrating toothbrush in the middle of his mouth, carefully poised a few centimeters over his tongue for several minutes—so that it operates without touching anything. Then I reiterate my way, repeating over and over and over “We need to clean the food off of your teeth, Adam.”

Eating has always been an issue for Adam, even as a baby.  When he was small, he sucked nearly everything he ate.  Want to know how long it takes to suck down a peanut butter and jelly sandwich in bite-sized pieces?  A long, long, long, LONG time.  Except for chicken nuggets, chewing in general just made him shudder.  I’d look at him and just blink, trying to figure out how I was going to turn him into the vegetable-lover his older sister had always been.  But for all of his challenges, determination, will, and unruffled resolve are qualities my son has in spades.  No matter what I tried to motivate him, his fear of food overwhelmed the dangled carrot.  I tried and tried and tried, but by the time he was diagnosed with juvenile diabetes at age 2, he had a scant 6 foods he would eat apart from crunchy snack foods like popcorn and crackers: peanut butter and jelly sandwiches, chicken nuggets, pizza, pancakes, Cheerios, and his one real meal—spaghetti.

In the hospital, the doctor and the diabetic educator told me Adam had essentially been starving for a while.  They said that when I got him home he would eat.  ALOT.  It still brings tears to my eyes to think about the night we brought him home.  Mom and Dad were with us for Christmas and had diligently taken care of Riley and Zoe while we were at the hospital with Adam.  Mom made spaghetti that night because it was Adam’s favorite.  My sweet little blond, chubby-cheeked two year old sat in his chair at the table and ate 3 heaping cups.  I cried.

Suddenly eating became not just “something he’ll do when he’s hungry enough” but something he had to do not to plummet into low blood sugars and eventually coma.  That’s when I learned just how serious Adam felt about avoiding the textures he feared.  I’d put things on his plate—just spoonfuls—and he’d politely push the plate away from him.  I’d offer him pieces of my own food, and he’d gently push the fork back in my direction. If I offered him no other options, he simply wouldn’t eat at all.  He never got upset about it unless I did.  He just simply, but firmly, refused. And over the years, there are some battles I have just realized aren’t worth the fight.  So, for a while, I became happy just to see my son eat what he liked and grow. And grow he has.

Adam with his teacher, Ms. Heidi

Our AU teachers are one of the greatest blessings God has provided us along the way.  I can tell you stories about all of them and the wonderful ways they have poured out their gifts and influence in the lives of our children, and Adam’s teacher this year is no exception.  She is absolutely gifted when it comes to teaching our kids and pushing them to grow beyond their challenges.  I love love LOVE her never-give-up, never-say-die attitude, and I often seek out her perspective on things I’m “batting around in my head” regarding Riley’s and Adam’s progress.  We’ve loved her for a long time, but this is Adam’s first year in her classroom.  At the beginning of the year, she approached me gently (though I think she knows she can safely say just about anything she needs to to me) with, “Um, how many different things have you tried to get Adam to eat? We were talking about this today, and since he’s diabetic, it seems like diet is pretty important.” Well, yea.  I smiled.  “I wish I could get him to eat more, but he’s just so afraid.  I haven’t really tried anything new in a long time.  I won’t say I’ve given up, but I guess I’ve just been focused on other battles.”

So, we talked a while about all of Adam’s rigidity and fear when it comes to food.  The more I listed his issues, the more she smiled.  One sign of an excellent AU teacher:  She LOVES a good challenge.  “Well, I think we need to work on that one.  We can’t just be happy with where he is.  We have to keep pushing.”  All year she’s been fantastic for me in that way, pointing out things that I haven’t thought about or battles I’ve left behind that need to be readdressed.  “I think I’m just going to make it a work task for him,” she said.  “Adam likes to finish things.  And he likes to do things right.  I’ll just add eating something to his work list.  He’ll have to do it before he can be finished.”  If she had one of those curly mustaches, she’d have twisted it wickedly at that point.  One thing’s for certain.  Ms. Heidi is exactly what Adam needs at this point in his life.  He has met his match.:)

So, the next week, I sent in three slices of apple with his lunch, and Ms. Heidi made it part of Adam’s work for the day to eat the apple.  Now, I’m probably going to botch the retelling a bit because I wasn’t there, but here is what I remember of what Ms. Heidi told me after school:  At first, Adam looked at her like she was from another planet and pointed at the apple.  “No, thank you,” he said, laughing, lifting the tray in her direction.  She remained stoic and shrugged.  “No, you have to eat it.  It’s part of your work.”  So Adam sobered, considered the apple seriously, picked up a slice, and took a tiny bite.  He gagged.  Ms. Heidi smiled at him.  “Oh come on, Adam.  You’re okay.”  And so it went.  He ate his apple.  He struggled, but he ate it.  Every day for the rest of that week I sent three little slices of apple in with his lunch.  Within days, Adam was eating his apple without even making an issue of it.

The next week, I put a cheese stick on Adam’s plate at supper, with his apples.  Adam loves shredded mozzarella cheese but had ridiculously refused to eat cheese sticks.  “No, thank you,” he said, lifting the cheese in my direction.  I put my hands on my hips.  “No.  You’re going to eat that,” I said to him flatly.  He considered me only briefly, then he picked up the cheese and took a tiny bite.  Quickly, he realized that the cheese stick was actually good. That night, he ate two cheese sticks.  The next week, I sent in watermelon.  Adam ate it without a single complaint, even though it was clearly difficult for him.  From there, we substituted chocolate Greek yogurt for the pudding he’d always eaten.  Then, I moved on to other kinds of yogurt.

When Ms. Heidi mentioned that Adam’s class would be having a Thanksgiving feast early the week of Thanksgiving and asked me what he would eat, I shook my head.  We were making progress, but not that much.  “He probably won’t eat any of it,” I said, “except maybe the bread.” Ms. Heidi just smiled.  “Well, we’ll just try it and see.”  That day, she called to tell me Adam had eaten an entire plate of Thanksgiving samples—turkey, mashed potatoes, green beans, pumpkin pie.  He tried so many things that day, I can’t even remember the whole list.  She told me that she thought he’d actually liked the turkey.  “He didn’t complain at all,” she said, “he just ate it.  And then he went and got the lunch you’d sent in, just in case we were wondering if he wanted any more.”  I was thrilled.  Stunned.  There aren’t words for the joy I felt over Adam’s progress.

So, the day before Thanksgiving, I stood in the kitchen making deviled eggs to take with us to some friends’ house.  I stood there with half of a boiled egg white in my hand, getting ready to fill it, when Adam walked into the kitchen.  I could tell he was interested in the egg.  “It’s an egg,” I said to him.  “Do you want to try it?”  I expected him to say no.  He always had.  For years and years I’ve asked Adam to take bites of things and try things, and he’s always politely but firmly refused.  This time, he leaned down and took a bite!  My jaw dropped, and I looked across the kitchen at Kevin.  Then I extended the rest of the egg white in Adam’s direction.  “Want the rest of it?”  He took that egg from my hand and ate the whole thing.  I could tell that by the end he was thinking, “I’m not so sure I really like that after all,” but he’d tried it!  And it had been by his own initiative!  I told Kevin that I thought we’d conquered a fear.  “I don’t think he’s afraid to taste things anymore. ” Wow.  We let that marinate in the silence for a minute.  “He’s still pretty sure he doesn’t like most things, but he’s figured out that tasting things isn’t going to kill him. And if he’ll taste things, we can figure out what he actually likes.”

So, we ate Thanksgiving lunch with some good friends, and we cracked them up making Adam try things.  They thought it was hilarious that we were so jovial about his gag reflex.  Kevin put a few spoonfuls of homemade macaroni and cheese on Adam’s plate and hardly blinked an eye when Adam gagged a little on the first bite. They laughed when Kevin said to Adam, “Looks like you need another bite, Buddy.” Then to our friends, “Hey, pass me some of that ham.  Let’s see if he can eat that.” And he did.  As a matter of fact, I think he liked the ham.

But old habits die hard, and I’d be lying if I didn’t say that I’m astounded at how quickly all of this has changed for my son.  One night in the next week, I made some tilapia for supper, lightly breading it with cornmeal and quickly pan-frying it in a small amount of olive oil.  By habit, I made four filets—one for everyone except Adam, for whom I’d made a peanut butter and jelly sandwich.  The girls are just as excited about his progress as we are, and as soon as I’d put Zoe’s plate on the table she asked him without hesitation, “Hey Adam, want to try a bite of my fish?”  He moved a little cautiously in her direction but easily excepted the bite she offered him.  Two minutes later, he looked over at her and said, “More fish, please.”  Kevin smiled at me, moving over to the table and cutting a bite off of each of the three remaining fillets for Adam’s plate.  “Uh, honey, I think Adam likes this fish.  Maybe we should just start making him the same thing we’re eating.”  I nodded.  I couldn’t believe it.  Moments later, having eaten three more chunks of fish, Adam looked over at me.  “More fish, please.” I cut a section off of my own fillet and handed it to him.  Three bites later, I handed over the rest of my fish and contented myself with my salad.  Adam ate my entire fillet.  I feel like words fail me as I try to tell you what this means to me.  My son has conquered a fear!  He has pushed beyond the oral sensitivity which remains a challenge for him (brushing his teeth is still frustrating) and has learned to try new things.  And in the process he found a new favorite food.:)  Since that night, whatever I’ve cooked for dinner, I’ve made for five.  Adam has eaten chili, bell peppers, carrots, Mexican chicken corn chowder, roast beef, sweet potatoes, corn muffins, and countless other things.  Most of the time, he doesn’t want more than one helping.  But that’s okay.  He’s eating new things—a variety of things—and he’s not afraid.  He’s not afraid! The rest will come.

Oh, and if all of this amazing progress were not enough, we received another gift this past Sunday night when the children of our church performed their annual Christmas play. A few weeks before the play, Ms. Heidi asked me if we’d like her to teach Adam a song on the xylophone that he could play at the performance.  Having gotten the okay from our children’s minister, I gave her the “go.”  Adam played We Three Kings to kick off the night.  When he finished (adding his own special ending and flourishes in the lift of his hands), we all clapped heartily for him and the best grin of the night spread across his face.  I felt so proud and happy watching him up there.  He’s come so far.  Adam was able to participate this year without the assistance of a helper beside him.  He accepted changes and instruction during the performance without panic or the least bit of anxiety.  Wow…for Adam that’s huge.  God is so good.  To Him be the glory, honor, and praise, now and forever.  My little boy is growing up.

And, I might add, at the end of the night Ms. Heidi turned to me (She blesses us all so much by attending the play…Thank you, thank you for everything, Ms. Heidi!) and said, “Well.  What do you think we’d like him to do next year? Whatever it is, I can teach him to do it.”  I’m so thankful that her confidence is as broad and deep as my hope, and that both of us want the very best for Adam.

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You’re on your own.  And you know what you know.
And YOU are the guy who’ll decide where to go.

You’ll look up and down streets.  Look ’em over with care.
About some you will say, “I don’t choose to go there.”
With your head full of brains and your shoes full of feet,
you’re too smart to go down any not-so-good street.

And you may not find any
you’ll want to go down.
In that case, of course,
you’ll head straight out of town.

It’s opener there
in the wide open air.

Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And when things start to happen,
don’t worry.  Don’t stew.
Just go right along.
You’ll start happening too.

OH!
THE PLACES YOU’LL GO!

You’ll be on your way up!
You’ll be seeing great sights!
You’ll join the high fliers
who soar to high heights.

You won’t lag behind, because you’ll have the speed.
You’ll pass the whole gang and you’ll soon take the lead.
Wherever you fly, you’ll be the best of the best.
Wherever you go, you will top all the rest.

Except when you don’t
Because, sometimes, you won’t.

I’m sorry to say so
but, sadly, it’s true
and Hang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You’ll be left in a Lurch.

You’ll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you’ll be in a Slump.

And when you’re in a Slump,
you’re not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted.  But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out?  Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

NO!
That’s not for you!

Somehow you’ll escape
all that waiting and staying.
You’ll find the bright places
where Boom Bands are playing.

With banner flip-flapping,
once more you’ll ride high!
Ready for anything under the sky.
Ready because you’re that kind of a guy!

Oh, the places you’ll go…

from Oh The Places You’ll Go by Dr. Seuss…one of my all time favorite books.:)