Eat the Doughnut!

"You haven't lived until you've dissected a doughnut."

Several weeks ago, I posted that as my Facebook status, and got a few puzzled comments.  Most of my friends could not understand what I was talking about.

But you, my fellow parents of children with sensory issues, you understand.  Don't you?

My son is an incredibly picky eater.  In order for him to eat a plain doughnut, we have to remove the "brown" off the outside of it, so just the inside white part is exposed.  This stems from the fact that over a year ago, he gagged on a plain doughnut, and the sensory memory of that has stayed with him ever since.  So for him to be able to eat it, he has to have the outside surgically removed.  Never mind the fact that he's able to eat a plain munchkin no problem.  The memory is from the doughnut, and can't be changed, reasoned with, or explained.

So, you ask, why even bother giving him the doughnut in the first place?  Give him a different kind.  Or none at all.

Because my son isn't just a picky eater.  He's a picky eater with SPD and autism, who also happens to have an intolerance to all corn products.

That's right.  His diet, already limited by his sensory disorder, is that much smaller because he can't digest anything with corn.  That means no corn starch, no corn syrup, no modified food starch, no dextrose, no maltodextrin, and of course, no high fructose corn syrup.

I'll give you a moment to go check your pantry and see how many foods have some corn product in them.  I'll name a few kid-friendly ones:  Cheerios, Rice Krispies, several brands of peanut butter, breads, jellies, crackers, chicken nuggets, hot dogs, bologna, deli meats, yogurts...and we haven't even left the house.  Forget about fast food or eating out most places.

So that's why we indulge him with the doughnut.  Because that plain doughnut from Dunkin' Donuts is the only thing there that he can eat.  And if his brothers are getting a treat from there, we like to make sure he can have something special too.

As you can imagine, getting food (and calories) into him is a challenge and always has been.  He's had this intolerance since he was born, and has barely stayed on the growth charts these past four years.  We've worked with occupational therapists when he was younger to help with his gag reflex to certain textures, and have had some success in that area.  But his memory is long for such a young guy.  Foods that he has thrown up in the past never make it back into the food rotation - strawberries, french fries, soft fruit bars, and of course, the outside of that doughnut.  We've had nutritionists suggest adding olive oil to his yogurt smoothies for more calories, but we're afraid to alter the one thing we know he'll drink.

All of this makes meal times very difficult.  The SPD, the autism, and the food intolerance add up to some very interesting dinner adventures.  My oldest bolts from the table whenever he sees his brother start to gag.  One night, my son will eat an entire grilled cheese sandwich.  The next week, served the exact same thing, he'll take one bite and walk away.  Or maybe not even a bite at all because he doesn't like the way it smells.  All his senses come to the table with him when he eats.  And no amount of prodding, begging, encouraging or yelling will get him to eat something that he has decided is not okay for consumption at that moment.

We've been dealing with this for enough years now that for the most part we just accept it.  Like every other challenge that comes with SPD, we try to anticipate what could happen and plan accordingly.  If we're going to a friend's house, I warn them ahead of time that he might not eat anything to make sure they won't be offended.  We bring our food for him to restaurants and pizza parties so we don't have to worry about the ingredients in every dish.  We've brought our own cupcakes to birthday parties and always have a stash of goldfish and corn-free pretzel sticks handy just in case.

I will admit there are moments when I just lose it at the dinner table.  Maybe it's the night that I've worked incredibly hard on a new recipe and my son won't even touch it because it doesn't look right.  Or maybe it's the night that I've ordered the same pizza that he always eats from the one corn-free pizza place in town, and he decides he doesn't like it anymore.  On those nights - the ones when he ends up with a yogurt and crackers for dinner - those are the hardest nights for me as a parent. I leave the table feeling like I've failed at one of the most important things I'm supposed to do: feed my child.

I'm hoping that at some point, he'll outgrow both the corn intolerance and the sensory issues surrounding food in general.  Until then, we'll continue to dissect the doughnuts.  Because while some may call it overindulgence, we call it a way to get through the day.

"Just eat it, eat it , eat it
Get yourself an egg and beat it
Have some more chicken, have some more pie
It doesn't matter , it's broiled or fried
Just eat it, eat it, eat it, eat it
eat it, eat it, eat it, eat it, ooh
" - Eat It by Weird Al Yankovic

27 comments:

Itsy Bitsy Spider said...

YES, YES, YES! I so share this feeling! Kaia does not have allergies but she is so picky. I can't even imagine what we would do if she had allergies!

She's been on one of her "hunger strikes" the past few days and only wants to eat nana's Christmas cookies. We've offered her everything -- hots dogs (usually her favorite), chicken nuggets... even potato chips. But nothing!

I know she'll eventually come around when she's hungry enough, but the frustration of not being able to feed your kid DOES make me feel like a failure as a parent.

God bless you. You're not the only one and THANK YOU for reminding me that I'm not the only one either!

Karla
http://helloworlditskaia.blogspot.com/

Patty O. said...

Oh, I can soooo relate, Alysia! Thankfully, we don't have any intolerances to cope with, but the sensory issues are all too familiar. It felt so good to read this, only because it validates that we are not being overindulgent. We're dealing with a real disorder. Trying new foods is so stressful for my son and the more I push it, the less he'll cooperate. I'm working on making it fun, but you can't really argue with their sensory reactions, right?

Danny has major tactile issues with eating and can't handle many textures or any mixed ones. So, no soups, stews, chilis, etc. It's so exhausting and discouraging.

Thanks for sharing this. And here's to our kids outgrowing these issues! Fingers crossed!

Niksmom said...

Right there with you, sistah! (Are our boys twins?) You're not crazy or overindulgent. Well, I don't know...you might be, but damn sure not about this stuff! ;-)

Chynna said...

Yep. I can relate too. Only with Jaimie, it was almost entirely related to her tactile sensitivities. She has HUGE textural issues. We're still dealing with that.

Xander, on the other hand, not only has those textural things but he's also weak mouth and tongue muscles and control, a gag reflex and food tags. Wonderful. He's gotten better but his eating skills (and it IS a skill) stopped at mushy food. We've had to re-teach him how to eat so he'll try stuff.

It's great, though, how once we have all the right information, we can do more for our kids. Now that I totally understand Xander's eating issues, I feel like I can help him more.

Thanks, Alysia.

Chynna
www.lilywolfwords.ca
www.the-gift-blog.com
www.seethewhiteelephants.blogspot.com

spectrummymummy said...

It seems Cubby is heading this way too, just to make cooking that little bit harder!
You know though, Spectrummy Daddy hasn't touched pasta or cheese since he was 4. The apple (skin fully removed) doesn't fall from the tree.

Kerry said...
This comment has been removed by the author.
Kerry said...

Glad to know we aren't the only family to deal with this issue. Many fights, tears, yelling...before we knew our son had an ASD, sensory, tactile issues. Still some like that...but now that we know...we overlook A LOT. Overindulgence? No...it's called being a parent, and doing what's best for your child.

morelikeaveragemom said...

Jett has had the same lunch every day since he was 3. People have mentioned eliminating gluten from his diet, which would eliminate about 80% of the good he eats. Nutritionists are no help.

I totally understand where you are coming from!

Martianne said...

In tolerances on top of SPD - you really deserve accolades and a hearty, constant portion of patience delivered to you daily! I have a hard enough time just w/ picky eaters! My son will eat pancakes - just made or cold, but only if he picks off any of the little crispy bits that might happen along the edges - and, woe to me if I dare reheat one in the toaster for him -- too crispy on the outside! Broccoli? Only the tree part, and only if there is no light green or white on it. Multi-grain bread? yes. With seeds or nuts in it or even that oat stuff on the outside? No way! Not unless they are made into flour. And... well, the list goes on and on and changes without misunderstnading the rules and reasons sometimes. Ah, the challenges!

Domestic Goddess said...

I can so identify with this! I am at the point that I'll take ANYTHING that he will eat. I've gotten my share of critics, folks telling me "he won't starve himself. He'll eat when he is hungry." Um. No. He won't. He once survived a whole week on just apples, a month on apples and rice crackers. He's a stubborn little dude.

dq74 said...

you have described meal times in our house. Autism + SPD + food intolerances is Perky all over.
We have peeled fish fingers in the past when we discovered Perky would eat them that way! We can now get him to sometimes eat small amounts of plain fish.
We also struggle to get him to eat some days. At least he has supplements he will tolerate, and while he is a slim child, he is very tall!
I, too, felt like a failure a lot as a parent over the eating/not eating. I have listened to our paediatrician when she said, 'this child is in the healthy weight range for his height, so just keep trying but don't stop doing all the supplements, because they are making the difference'.
Perky has even gagged at the smell of muesli. So I really do know how frustrating, bewildering and exhausting food is for other families. Thank you for once again reminding me we are not alone. I've told you how much that means to me :)

Laura said...

this made me laugh, cringe and scream because it is oh so close to home!!!
Thank you for making it all feel 'normal' and that feeling like a failure in regards to actually FEEDING your child...I am not alone!!
Blessings!
Laura
www.followingGodalongthespectrum.com

Yvette said...

I can relate, too! I know that feeling of failure SO well. My son with SPD has major problems with texture and is extremely defensive orally. He also has severe egg and peanut allergies, plus can't tolerate gluten, dairy, or soy. He eats the same 5 things every day, but at least he eats them, and they are healthy. He is growing again (had stopped before we figured out gluten problems) and improving developmentally every day! Worth evey minute of time I spend in my kitchen making his food!

trydefyinggravity said...

I can't tell you all how much this means to me - all these supportive and "that's familiar" comments.

I know very few people who go through this with their kids, and every meal time I wonder if I'm the only one struggling with it. Every child goes through food "jags" of course, but not every child does it to the extent that ours do. Your stories helped me tonight at dinner, when I knew that it was okay to just let the battle go. Tonight was a granola bar and yogurt night.
Thank you ALL so much.
alysia

trydefyinggravity said...
This comment has been removed by a blog administrator.
ashleypmo said...

My son has Down syndrome AND a corn intolerance. He can't even tolerate corn-fed animal products (meat, dairy, eggs of corn-fed/grain fed animals). The only dairy he can tolerate is Horizon organic, because they only give their cows grain during milking, whereas other organic dairies supplement with up to 30% grain. He also has a citric acid sensitivity, which means almost every fruit/veggie is off the list. He's very OCD, and I've thought lately about having him evaluated for SPD, so he is very picky about the 8 foods that he is allowed to eat. This week, he only wants Triscuits. SQUARE Triscuits---no broken rectangles...only complete..whole..unbroken..squares... Feeling your pain, sistah.... ;-)

Lindsay Bartholomew said...

I have been lectured SO many times that i am 'Overindulging' Emma! It pisses me off!! With kids who struggle you take what you can get. Every meal time in our house is a battle. A battle of what Emma can eat, what she will eat, keeping her focused on meal time long enough to eat. So if she needs 3 forks and a spoon for each food on her plate, the crust cut off and nothing touching to help her eat 3 bites- I will do it!

Caitlin Wray said...

My darling Alysia. Sometimes I worry that you and I are really the same person, and you are an alternate persnality that I created in order to cope with my stress.

Sending a corn-free kiss your way. You can send back a dairy/wheat/soy-free one to me :)

Caitlin
www.welcome-to-normal.com

Michelle said...

Hi
I found this blog today while searching for blogs by families living with Aspergers.

I am Mum to three boys aged 7,6 and almost 5. My eldest and youngest are on the autism spectrum and my middle had global developmental delays and all three have sensory issues big time!

I have enjoyed browsing around your blog and look forward to more of your posts.

Michelle :-)

Heather said...

I know so may kiddos that struggle with this. It has to be so hard. We are fortunate that Eli doesn't have ANY eating issues. Keegan does, but it doesn't affect him like this. Sounds like you know your kiddo, though. Keep up the good work!

Gina @ Special Happens said...

Absolutely! Eat the Doughnut. It's something you can eat...eat it!

Jesse said...

This post made me cry. We have this battle with Max every meal time. If he sits down at the table and everything is not right he will get up and run around the house screaming. So whatever it takes. I love the comment about overindulgence. So many people tell me that. They don't get it. So glad there are people that do.

Jesse

mylittleecho said...

My son is JUST LIKE THIS! He has been gagging on food since infancy. We are currently working from a list of about 15 foods he will eat, which makes his meals pretty boring. I've stopped caring about giving him the same things day after day, as long as he's growing. I've tried putting supplements in his yogurt, but he notices right away and won't touch it. So he is basically surviving on chicken nuggets, yogurt, and gummy vitamins.

ShesAlwaysWrite said...

I relate to this from two directions - my experience with him and my own food issues. Mine are manageable (pretty much nothing squishy like soggy bread and mashed potatoes) but Bear's challenge approach your son's. Thankfully we haven't encountered any allergies/sensitivities (yet?). People kept telling me to try a dairy free diet when he was having ear infections, but I refused because omg there are days he'll only eat yogurt smoothies and chocolate milk.

Out of the Blue said...

Please forgive me if there is an obvious flaw in this idea, but something that came to mind when you mentioned not wanting to risk changing the smoothies-- Could you use food coloring to change the color of the new one that has olive oil (make it blue, or some color very different from his "usual" smoothies), so that if he rejects it, he'll only reject "blue smoothies" (maybe with a whole new name given to them, so no association is made between them and the usual ones)? You obviously have a much better sense of what will and won't work for your kiddo, but I wanted to throw the idea out there on the off chance that it might help.

Hartley said...

Hi Out of the Blue,

Thanks for joining us!

The basic flaw in the idea is that fake dye is most commonly avoided like the plague with special needs kids. :)

I would rather feed my sons a pound of straight white sugar than even a few drops of fake dye - or High Fructose Corn Syrup.

Even the FDA is *finally* coming around to understanding the problems associated with fake dyes (some European countries have banned fake dyes in their foods already).

Thank you for your creative take though - ideas are ALWAYS welcome!

Hartley

agear said...

Our son picks the top off of pizza, hot pockets and just about everything then eats it toppings first. We just shake our head at him but at least he eats it. He doesn't eat many things so I don't mind as long as he eats it.Plus if he sees something on a dish or cup that looks like dirt even if it's just a scratch he will say "it's icky". He drives everyone nuts.


April