Have it Your Way.

There was always something soothing in that copyrighted phrase from Burger King.  It gave you control, freedom.  It didn’t matter what you wanted on your burger.  They would not issue any judgment calls – or tell you no, your request is crazy – you just got your burger – your way.

And that’s what my little guy wants.  For him, it’s McDonald’s.  And the Burger King phrase really kinda sums up our whole food issue.  He maintains control.  I think a lot of the judgments. the advice and the dirty looks I get about my kid’s eating habits pre-suppose that rationally he will give up that control if I just “starve” him.  But presupposing rationality does not account for the disability.  There is something that goes on in his mind, sensory, processing, something I don’t understand that prevents him from eating except in a strange, ritualistic, highly regulated manner.  It’s not something that can be attacked with reason, or for his own good.  It’s something else.

For a while, the little guy had gone vegetarian.  He has never knowingly eaten peanut butter (yes, accidentally in candy which he promptly spat out). He refuses to eat any other nuts, fish, veggies, meat/soy, or legumes.  There was at one point no source of protein going in.  Recently, he was on a Jamba Juice, Orange Dream Machine/Lunchable Nachos diet.  Then, as abruptly as that phase came on, it left.  We’re back to the Happy Meal!

And when I say we’re back to the Happy Meal, I’m literal.  The only thing he will eat that is not a straight sugar rush (or fruit) is the McDonald’s cheeseburger.  Don’t even say “chicken nuggets” because you might as well say skunk meat or cannibalism – his reaction is about as terror-stricken.

The right size…

Believe me, his eating habits are not something that a short ABA program or starving him will “cure”.  His ABA team has put on and taken off the “new foods”, and “sitting for meals” program several times because they cannot make progress with him.

Frustrated with the ‘junki-ness’, the cost and his refusal to eat much, I cut him off of all fast food and tried to implement my own food program.  That worked out really well. He did not eat much of anything.  I think on average, he was eating, a few bites of peaches, part of a pop-tart and a few chips per day.  That’s it.

There were moments a few weeks ago that there was talk of g-tubes due to his choice to starve rather than down any food.

So it was with much fanfare that we returned to McDonald’s when he asked for it.  And thus, the routine began again.  There is a whole ritual around these burgers.  I hand him each piece.  The pieces have to be just so – if the bite is not the right size, if it has no “edge” (think- middle of the burger- torn on all sides), wrong temperature, etc., he won’t eat it.

Inspecting for size, condiment distribution, temperature, edge, color and who knows what else…

Sometimes, the whole burger falls apart because it’s saturated with ketchup.  Then, I cuss and moan.  Then I feel guilt because my child says, “Sorry, Mommy!” and I realize he thinks, I think, he’s done something wrong.  I have to explain why my voice sounded un-Happy Meal-ish. “I’m sorry sweetie.  I didn’t mean to yell.  I’m not mad at you…” I’ll say.  At this point, he cuts me off and says, loudly, “You didn’t do anything wrong!” meaning himself in the second person.  That usually continues for a good five minutes, followed by his refusal to eat any more.

Or, if there is just a slight over “ketchup-ing” then I debate whether to give it to him.  If he doesn’t take it from me on the “clean side”, then he gets ketchup on himself.  This is not a sensation he enjoys.  He has, for as long as he’s eaten these (probably 4.5 years), yelled out, in a panic-stricken voice, “CLEAN, CLEAN!!  Two minus five equals….”  (his opening act for meltdowns) and it will continue until long after he has a wipee or napkin to rid the nastiness from his fingers or clothes.  Before he was 4, I would have to pull over and clean him myself.

So, last week, handing him the burger, I debated whether a slightly, “over-ketchup-ed” piece should be offered.  I elected to “go for it”, feeling adventurous.  I waited.  All was quiet for a few seconds.  Then, quite calmly he stated:

“I got ketchup all over me.”

What?!

I checked the rear view mirror.  Sure enough, it was my kid still sitting back there.  He has a little ketchup on his face.

Was that really him that said that huge, appropriate sentence, or was it the DVD?  No, it was him.

He laughed.  I was dumbfounded.  I responded, “Well, I guess you did.”

I handed him a napkin.

He wiped his face.  He finished the burger.  The whole thing.

No more discussions.  No meltdowns.  No drama.

That, in my house (or car), is progress.  And it may not be rational to you, but that sentence he gave me?  That was music to my ears.  And so was the empty box.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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17 Responses to Have it Your Way.

  1. There’s no need to explain … I get it. It is most definitely progress. We have a lot of eating issues in my house too. CC and I hi-fived each other a couple days ago when Jay chewed and swallowed ONE mouthful of plain white rice. That was huge progress for us.

  2. Allie says:

    That is progress and the most beautiful ketchup mess ever!!!!

    If only I didn’t live on the other side of the US because we could have some McDonald’s dates. It’s one of the about 5 foods that Cameron eats on a consistent basis. He wakes up asking for his hamburger, goes to bed asking for his hamburger and McDonald’s is his very favorite. And that part about the hamburger falling apart? Ugh!!!!!!!!! It always happens when I’m driving and can do nothing about it.

  3. Val says:

    My 4 y/o has gone vegetarian except for milk & yogurt – has a very limited diet- yet he hasn’t starved, doctor says he’s healthy, he’s not anemic and I think he has a better diet than us the adults in the house. I jokingly say that he might live up to 120 y/o by eating like that or that I should get on “C’s diet” to shed those extra pesky pounds. You’re doing great, Karen!

  4. {{{{HUGS}}}} this sounds so rough for both of you. I am thrilled for your progress.

  5. projectmat says:

    When Matthew was ten he was 50 inches tall and weighed 50 pounds. I used to make him milkshakes and slip in eggs and bananas. One doctor told me just to give him the peanut butter jar and let him eat it by the spoonfuls. The good thing is he eventually grew, whether it was because of or in spite of my efforts. Wishing you continued patience.
    Teresa

  6. Lisa says:

    That is beautiful progress!! So happy to hear he got that ketchup all over his face..and that he shared that with you. 🙂

    Your description of the reaction that it could be skunk-meat or cannibalism??! That is how my Jake reacts to meat products, too…although for him, the chicken nugget is now occasionally acceptable…but the burgers, oh dear God, no!

  7. I can’t even imagine how hard this must be for you and your son. Congrats to him for his progress though! Here in my house, we are dealing with the opposite “problem.” Joel puts everything into his mouth, food or otherwise. Also, it seems like he is constantly hungry. I feel very fortunate that he is not a “picky” eater, however I wouldn’t mind so much if he were a little more picky about the things he puts into his mouth.

  8. Wow. “I got ketchup all over me.” That’s like, enough to give me CHILLS! (We get piteous pleas for “napin – napin – NAPIN!” (napkin, napkin, NAPKIN!)

    You can I could probably each write a book on how not to feed our kids. The laws, the rules, the routines…. except by the time we finished, it would all be different. Never a dull moment with these guys… nope. never a dull moment!

  9. great progress….and once again paints a clear picture of how much you do to help your son…so much to take into consideration. Applauding you for your continued patience and effort…..and a little bit of cussing never hurt anybody. :))) Sam

  10. Melissa says:

    I so totally get this…
    We’ve had feeding issues since infancy, or very nearly so. An exaggerated gag reflex, super picky eating, texture issues, being thrown up on… All have been part of our daily existence.. When the list of acceptable foods was down to 3, we got feeding therapy for a year. And let me be clear, it was something we battled for because my daughter is not failure to thrive, so people would insist she was healthy, or that when she was hungry she would eat… Which was/is not in fact the case. In any case, her feeding therapist (also her speech therapist and the therapist who originally diagnosed her) did things with her that I consider magic. She is still a very picky eater, but the list has grown. And often I’m not even sure its the therapy or just her doing things on her own terms that works best… Either way. Yay for progress.

  11. ohmigosh! That is huge progress! I am pretty sure that counts as progress anywhere. There are so many things going right in this story for your son.

  12. Mary says:

    YaY! for not freaking out when he got ketchup on him. I love to see that kind of progress. Something goes on for so long and then one day they just get it. It’s so great.

    And yep to Karla. The eating rules change daily. “I love this. Can we have it everyday?” Next time it’s “Yuck, why did you give me this awful stuff.”

    Freckles lived on Poptarts and chocolate milk for years. She survived. That’s about all I can say. They had to be frosted brown sugar poptarts and could not have writing on them. The chocolate milk had to be kroger brand pre-mixed chocolate milk. It could not be Nestle or Dean’s or any other brand name. It could not be from Walmart. It could not be organic. Oh and then there was the 16 pack of brown sugar poptarts that tasted “burnt.” So big sis and I tasted them. They weren’t burnt, but they did taste a little “off.” Similar to baking powder biscuits? I got a freebie from the company for those. 🙂 No one else would have probably noticed, but Freckles did.

    We did a food group at OT. She ate it there. At home, she didn’t. She tried to tell me they MADE her eat it. Um, I watched the whole time…

    I understand about all the crappy advice. Even our doctor still thinks I just need to make her eat the right foods. I deserve a lot of credit for not smacking that man last time we discussed this. Good thing Freckles has taught me so much about patience, huh? 😉

    Recently, we have gone gluten-free. (I should say we’re in the process of going GF.) So no more Happy Meals, donuts, Pringles, butter noodles, Ramen… I don’t have to tell you how much fun this has been. Her tummy has mostly quit hurting, but otherwise I can’t say it definitely has or has not helped. She giggles now so I guess that counts for something, right? The nutritionist who recommended a gluten-free 10-day trial said we would see a difference in 10 days if going GF was going to help. I didn’t see it so I let her eat whatever. Day 3 of that she was a raging lunatic. Back to GF. I still think the people who see a big behavioral change in 10 days are seeing the result of cutting carbs and not necessarily gluten.

  13. Huge! I love how our kiddos can surprise us. Good going, Tootles and yay, Karen!

  14. eof737 says:

    Nice surprise… not bad at all… vegetarianism aint bad. Will return soon.

  15. Ellie says:

    I understand how difficult this is. At the minute my eldest is eating next to nothing and it’s a huge concern.

  16. That’s great progress 🙂

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