Monday, November 25, 2013

"They'll eat when they're hungry."

No honey, they won't.  Not my kiddo and from what I hear, not a lot of other kids with autism either. 

This sentence has been way to much.  From the get go.  You see, my kiddo would in fact pick starving rather than eating.  That lent itself to me doing what I call "Desperate Acts of Parenting".  Think how cranky/listless and down right crappy you feel when you are hungry.   Add a dash of autism and you got a recipe for an epic meltdown with poor health for dessert.  Good times people!  Good times.  I would beg this kiddo to eat anything.  I mean anything, if it meant something would pass those lips of his.  How else do you think this blog got named?  Fries for breakfast? Sure! They are just hash browns in stick form.  Same thing!  Not to mention the limited places we could grab a bite to eat ourselves that we could take him that would be quick and would be able to purchase through a drive thru window should we not even get across the parking lot without a meltdown because he saw a school bus he wanted to touch barreling down the highway.  Big mean mommy that I am, I wouldn't let him run into traffic to go play on it.  Plus the added bonus of those little indoor playgrounds.  Nothing helps builds up your child's budding immune system by being exposed to the petri dish that is the ball pit! Hey it's good sensory work.  I'll just give him a Silkwood type shower after.  He'll be fine.

I started seeing the eating issues when the kiddo was about twenty months old.  Being the new (clueless) mom that I was, I eagerly accepted that he was just starting to be fussy as a result of the "terrible twos" that he was approaching.  Four months ahead of the game! My word! Truly he was gifted. However when mealtime became a battle that ended in tears, usually mine, I suspected it was more than just being a toddler. By the time we finally got an early intervention speech therapist into our lives to take a look at this, I was frazzled hot mess.  I was desperate.  Not eating was effecting EVERYTHING and EVERYBODY in this house!  (Except the dog actually. Whatever the kiddo threw, boy, that puppy was loving it!)  That poor therapist was probably driven to drink by the kiddo.  Not a single spoon or those little Nuk brushes would go in his mouth without a major production.  It wound up being one single spoon that my son would actually wrap his lips around in the beginning.  If the house ever caught fire I think I would of run back into the burning flames to rescue that spoon.  Even she seemed a little shocked that I was willing to feed him chocolate pudding at 9:30 in the morning if it meant something on a spoon got in his mouth.  I did not care.  When it came to getting him to eat, it was by any means necessary.

We are now on our second attempt at feeding therapy with this kiddo.  I'm cautiously optimistic by his progress this go around.  We have gotten him to try more things.  He finally started used a fork correctly.  Might be a no brainer for anyone else but for us it  was a multi step process of learning how to accept that this sharp pointy thing was going to go in his open mouth just far enough to get the food in but not so far to gag on it or stab himself.  That he would then bite down on the fork and pull it out to get the food off the fork.  That he would have to manage the sensation of the different textures of the food next to feeling the texture of the metal or plastic of the fork and then remember after all that to chew his bite completely and then swallow.  Repeat, repeat and repeat.  It's a process. 

I've kind of accepted that eating is always going to be a major issue for him but hey, what else is new.  The fact that the kiddo is willing to try some new foods here and there give me some hope.   Please though, please don't ever tell me he will eat when he's hungry because after nine years of this I can tell you without a doubt that he won't.  This isn't him being a fussy eater.  This isn't just me spoiling him.  Please don't tell me to bring him shopping or involve him in the cooking because I've done both and neither have made a dent in this problem.  (Much like his father, he doesn't like cooking at all.)  Yeah, I already know about all those how to hide veggies in foods cookbooks. Bought a few of them too.  Problem was he wouldn't even eat the foods that were suppose to be the carriers of the secret veggies. We have about a thousand different mountains to climb.  It stinks that eating is one of them.  Sensory processing disorder is real and sometimes it's a real pain in the ass.  I'm not going to lie about that.  I can never even tell what each meal is going to be like still. 

Let me break it down to you this way.  This kiddo is the walking french fry but there was a time that they couldn't be any other shape but sticks.  No curly fries.  No crinkle cut.  Don't even think about steak fries or wedges.  Matchsticks cut or nothing.   The first time he "kissed" a waffle fry I almost wept for joy. Yeah, it can be just that complex.  So I don't know what I was thinking when I offered him mashed potatoes last night.  Just the inside of a fry right?  WRONG! 

I must of had a leave of my senses. :-)

20 comments:

  1. I know exactly how you feel. My kid is not as bad as yours but still has issues. Like the only pasta he will eat is shells and spaghetti. Only chicken nuggets not regular chicken. Only frozen meatballs not my homemade (which are almost identical except in size and texture). Fruits and veggies are almost gone from his diet completely.

    It was actually thanks your facebook post that I first learned about feeding therapy, so thank you for that!.

    We may never get our kids to like and eat new foods, but at least we tried.

    And with all things, we will get through this.

    Good Luck!

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    1. You have to pick and chose your battles - cake for breakfast isn't such a bad thing and neither is mac and cheese. My son has about 5 things he eats Kraft Mac and Cheese (no other), chicken nuggets and fries, French toast made by me from scratch and party cake from entemanns. Cake is the easiest to give in the AM not enough time to cook. You do what you gotta do. He would definitely choose to starve over eating something that isn't on his menu plan.

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  2. So glad you put this up. My son's para worked with him every day in school. She tried school food, yes, it's good at his school. Stripped him down to his pullup and covered him in a towel. There was lots of gagging and throwing up but now..he eats some school food but only at school. The some foods he eats at home are home only foods which will transfer to gramma'S house.The nutritionist was
    the person who told me "he will eat when he gets hungry enough". I told her for someone listed as able to work with people with autism, she is a quack. And as I was leaving I added simply that I would pass on her thinking to all of the other autism parents I know. Our family doctor also stopped referring patients to her. My son smells and touches all food and when he is ready, I know he will try a nibble.

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  3. You know I'm here with you -- big virtual hugs and a side of garlic cheezy bread (soy/dairy-free of course), cut just so and served up regularly for breakfast, lunch and dinner. I'm glad to know that there is *some* hope for the future -- thank you for continuing to share your experiences!

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  4. I teach camp at my zoo for kids with special needs. Many, many, many, many of them have food issues, and they are no laughing matter. I have parents who stake out an entire corner of our building at meals and put up little barriers to protect their kids from food smells, others who will dodge out of a tour because their child indicates there's something at the food stand they'd like to try. Whatever works.

    After four years with the same campers, it is so wonderful to see the improvements each of them have made over the years. Because I only see them four times a year, I can see their progress. Don't lose heart!

    Kudos to you for doing what you have to do to keep your son nourished.

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  5. Oh boy. I feel you and I wished that helped in some way. YOU are a damn fine mom. And those last 2 lines? That is why I love you. That summed up autism in our house right there.

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  6. I understand completely. I am told my son's problem is behavioral though because sometimes he will eat a certain thing then other times no way. He will not eat from a spoon but will eat peaches and only peaches from a fork. He doesn't seem to have any swallowing problems though I just have no idea. I wish I knew what was going on but he is nonverbal as of right now so he can't tell us.

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    1. I get that ALL the time!! My son will at least, begrudgingly "try" something and when he gags we get to hear "See, he's making himself do that... It's a mental thing" REALLY?? When did you become a doctor? I hate when people try to "help" me by giving this advice, or I really love "Just make him sit there until he eats it, and if he won't, keep giving it to himmmm or every meal until he does!" Again, REALLY? That may have worked for your mom, and my mom, but it doesn't work for this mom!! You can lead a horse to water, but you can't make 'em drink... Just sayin...

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  7. Oh yeah! Been there, done that, bought the t-shirt. My younger son has been kicked out of two eating programs!! lol Somehow he is growing despite probable malnutrition from junk. Hugs.

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  8. Well written. Love it.

    let me tell you it does get better. When I was younger I would eat stones, paper or dirt, but so few foods I was malnourished. starvation held less fear for me than putting the 'wrong' food anywhere near my face. If it looked, smelled, or felt wrong, or I was offered at the wrong time of day, or on the wrong plate, I would not even consider getting it near my face. even one time of a food being offered at the wrong time, or on the wrong plate would terrify me, and I may never try that food again.

    I am now 21, working, and living independently, even caring for another young spectrumite. My diet still lacks carbohydrates, but I eat more than enough different things that I can have the same meal no more than twice a week.

    anonymous, I don't know your son, but I know autism, from the inside and out. there are many reasons your son may only eat foods from a particular utensil. the most common ones I have come across are routine, and motor skills.
    For example, you try picking a piece of slippery peach up on a spoon while drunk, then you might have an idea of what it can feel like to a spectrumite with low motor skills. of course, once you find a way that works (in this case, the fork) you will become reluctant to try another method, as dropping the peach might make you feel like you have failed. sometimes the littlest mistake can feel like a massive failure for many spectrumites.
    the routine element can be important. research shows that the general population experience the taste of food differently when presented on a different plate or with a different utensil. this effect is strengthened by a mind that may rely on visual associations to know that, for example, peach will taste like a peach, not a pear. the image of a peach on a fork may be what your son associates with the taste he likes.

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    1. Thanks so much for this, all of this is new to me but I'm learning. My son is 3 and very very much into routine. I had never thought of that before.

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  9. This is my son to a "T". All French fries must be the correct color, shape, size, crispness, and texture or they get thrown in the floor...much to our pup's delight as well. And if it is something crispy and doesn't look right it will be promptly crunched up into teeny tiny pictures along with a meltdown.

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  10. my kiddo ate a variety from 8-10 months old, then it stopped and slowly we have worked up to 5 consistent foods. he is almost 19 months now and we are doing speech, ot, aba, and some feeding within each therapy......he is chucky (carb addict) so the doc doesn't think this is a major deal-I mean he puts the referral in but shakes his head as he does it. Reading your blog makes me not sweat it too much-ok, I still do. I pray that he will eat more than 5 foods when he moves out ;)

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  11. I have 2 kids, both reluctant eaters from birth. My older older child made sudden improvements at age 9 that had nothing to do with feeding therapy. My younger child still struggles to eat and gain weight. The feeding issues really push me over the edge - I know exactly what to do for the sleep disturbances, meltdowns, sensory issues, life skills, etc. But I have absolutely no idea how to convince my kids to eat.

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  12. I'm right in the boat with you! Who knew food and eating was so difficult!

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  13. Hello This is Keegan from the Sluis Academy again. I had a question how does your son compare in size to other kids his age? Eating can be a problem with all children whether their autistic or not although being autistic definitely magnifies the problem. How does he handle things like spaghetti where you can hide the vegetables in the sauce? Have you tried rewarding him with things he loves? Maybe a carrot before this fries? Thank you for your time good luck!

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  14. Thankyou. You nailed it. Its like you are talking about my boy, at this point i cant imagine him ever eating something that requires a fork

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  15. Dear Blog Writer:
    It sounds like my kid ran off wandered over to your house. If you could please send him back home, I'd much appreciate.

    Thanks so much,
    A Comiserator.

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  16. Yeah, food is a tricky thing. There are good food days and bad food days. (And also I get grumpy really quickly when I haven't eaten). There were years where I wouldn't eat anything except plain pasta or plain rice. Over time, I got better at eating more diverse foods as I figured out exactly the bits of food I didn't like, so I learned/my parents also learned how to made food that I ate regularly. I'm even almost an adventurous eater now (as long as it is something I know I don't have to eat if I don't like it.... so I will taste my adventurous family's food at restaurants but order hash browns for me. Or try things my parents cook when I know I can always make myself a quesadilla if I can't eat it.)

    But I also eat a lot of cheese. But it works out enough and I get food as a 23-yr-old adult usually.

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  17. Thankyou !!!! I am so tired of the "he'll eat when he's hungry" "just hide the vegies" comments because like you say my son (7) would rather starve and not many people truly understand that!

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