Eating Issues and Sensory Processing Disorder: An All Day Long Affair

I think I could eat pumpkin pie,” he said tentatively.

It was 9:30 PM. He should’ve been on his way to bed. I should’ve been on my way to bed (my eyes already felt like I needed to hold them open with toothpicks and my legs were heavy…way heavy, begging me to just lie down already).

He hadn’t eaten but one whole meal in three days.

So, I asked him to help me bake the pumpkin pie.

If you don’t have a child with food issues, you may think this was spoiling him. You may think that I am just a gracious momma, and have so much patience. You may think somehow we actually created these food aversions by being so accommodating.

If you do have a child with food issues, you just knowingly sighed and thought exactly what I thought last night – at least he figured out that he could tolerate pumpkin pie.

My son’s sensory processing issues effect every aspect of his life. Eating is one of them. On a regular basis, he has very strong aversions to certain textures, smells, and tastes that I have learned to accommodate when planning our meals.

For example, no meat that requires any level of chewing. If it’s not soft, like what you would serve to a baby, he cannot tolerate it. No crunchy chips or crackers. No serving any type of food without a drink nearby, so he can take a bite of what he is eating, chase it with a drink to soften it, and then chew and swallow.

This is just normal for us and really, in the world of sensory processing, is not that bad.

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But, for the last several days, I have gotten a glimpse into what it is like for some mommas (and kiddos for that matter). My son’s feeding issues are so minor compared to many families. Some children will only eat certain colored foods, or have only four foods on the maybe he will eat it, let’s hold our breath and hope list.

These children can actually starve themselves. Because sensory issues and rigid thinking are in play here, the saying “The child will eat eventually. He won’t starve. Just wait him out,” does not apply.

Now, I am not an expert. I don’t even have a lot of practical mommy experience with feeding issues. I am writing this because I have become aware of how crazy all the time frustrating never have a chance to not think about the next thing this child will put in his mouth oh my goodness please just eat something exhausting all day long this is for many families.

My son is cutting two 12 year molars right now.

This has catapulted us from ‘basic constraints on eating’, to ‘every single minute of the day trying to figure out something for him to eat’ status.

At this point, it’s not even about healthy nutrition. We are so fortunate because eventually, those ever-lovin’ molars will come in, and we will be given the chance to return to our normal. (I am so, so sorry for the mommas that don’t face the day with that hope.) He will live.

But imagine any child not eating for a few days – even a few hours. Imagine their attitude, their energy level, their ability to play well with others, complete tasks, function, sleep…it has gotten ugly around here. Very, very fast.

 

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The past couple of days have looked something like this:

Every 30-45 minutes, my son comes up to me and verbally stims (he makes a sound that is a little bit like a grunt and a whine) and furiously rubs his head on my arm. I hug him (deep pressure) and he says, “I’m hungry.”

I take a breath and say, “OK, let’s go find something that you can eat.”

He starts to cry/get frustrated and says, “BUT THERE IS NOTHING!

I say, “Let me try.”

He slams the door to his room and gets under his lycra sheets, while I scour the kitchen looking for something else soft and easy to eat.

I find an option, prepare it, and take it to him (knowing better than to ask him to make a choice right now – his brain is rigidly focused on there being nothing at all that will work…it’s better to just put it in front of him and go from there). He will always try a bite.

I hold my breath.

He will either say, “OK, I will try it,” or “Oh mom-eeeeeeeeeee. I am so hungry. No, just no. I can’t eat.”

If he says yes, he might eat three or four bites before it becomes too much for him.

And then we start the cycle all over again.

After three days of this, I am starting to lose it.

I have made 17 meals for this child over the past three days (not that I am keeping track or anything). I have driven to restaurants after the rest of us have eaten, to see if he might eat some of his favorite foods. And yes, I have sent my husband out for cake, soft sweet cake, when nothing else worked (for the child and for me).

His blood sugar is a mess. He is weak. He is mean. He is frustrated. He is desperate to eat.

And, for right now, he just can’t.

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If you are a family dealing with these types of  issues all the time, I am praying for you. This is no joke. This is three times a day plus snacks, all day, all night, with no breaks. You are a soldier in the battle for your child’s health. A foot soldier, on the ground, in the mud…

I see you. What you are doing matters. And oh my goodness, I am praying for you.

If you have never had to deal with this level of eating related, kid stress, please be kind. Be gentle the next time you see the little one losing his mind at the park because the sandwich has the wrong kind of cheese on it. You never know what is causing the reaction.

Please, please, please error on the side of grace. Your kind smile can mean the world to a momma at the end of her rope, or to the little one who would love nothing more than to easily be able to eat like everyone else.

Now, back to it. I need to see if eggs will work for breakfast.


 

20 thoughts on “Eating Issues and Sensory Processing Disorder: An All Day Long Affair

  1. Again..you’ve touched that spit in my heart that I TRY to keep hidden. IT’S. SO. HARD. And what makes it harder is trying to imagine what it’s like for my 3 yr old Princess. We are blessed that she is ok with most textures (but no chicken-no how-no way)…but it is literally a day to day sometimes hour to hour change on what she can tolerate and eat. Family & friends (even our FORMER Pediatrician) that have NO CLUE what it’s like, talk smack because I still give her Toddler formula but it’s the only way I can be sure that she gets SOME type of nutrition & calories in some days.
    I’m praying for you & your family right now. And again thank you for letting me know I’m not alone as we are in the early “still-in-shock” stages of all if this. Hugs.
    Dana

    1. Oh Dana, you said that well…The early “in-shock” stages and the trying to keep the “spit” in your heart hidden (might be one of the most fun typos ever on the blog…you are in good company here. I once tried to type ‘definite’ in a work email to a CEO and sent ‘defecate’ instead).
      Praying for you and yours as well!
      Love,
      Shawna

  2. Shawna, I was sitting here reading this and first admiring you for not only making your sons life full of love, life, adventures and understanding his journey with his challenges. As I think about myself (I have Fibromyalgia-chronic pain, which comes along with sensory issues) I think we all have our levels of tolerance for things…your beloved son is more sensitive than the “norm” but what is normal? THANK YOU FOR OPENING YOUR LIFE, YOUR FAMILY, YOUR FLAWS AND TRIUMPHS! BLESS YOU AND YOUR FAMILY!

    1. Sue, thank you so much for the encouraging, kind words! So much appreciated.
      Praying for you and your chronic pain. I have a friend with Fibromyalgia and it is so debilitating. Thank you for taking the time to be so sweet to me, even in the midst of your own challenges.
      Love,
      Shawna

  3. Shawna, I feel blessed to be able to see the similarities in ALL OF US….we are all in some type of journey. I strongly believe that if we all try to accept other for who they are…warts and all then life would be much more peaceful. Sending healing to your friend and continued love and support to you and your family. Susan

  4. On the smallest of small scales, I get this frustration. I have major aversions to food textures (nothing too creamy–guacamole, nothing too crispy–onions), and it appears Avonlea has inherited it, as well. I will pray that his teeth grow in supernaturally fast, for both of your sakes.

  5. Thank you for writing about this. We have fought to get enough calories in our daughter all her life. Knowing she’s hungry, but physically unable to eat, is frightening and heartbreaking. This is something I’ve never been able to explain well..you did a great job. For other parents: We were able to make huge gains with a combination of OT and Speech therapy (the speech therapist had experience with feeding disorders/delays).

  6. Sometimes as much as you hate to hear another is struggling it is good to know you are not alone! Let’s hope all of our kids eat something today!

  7. Thank you for this! From a mom whose daughter couldn’t eat anything the first 4 years of her life. Not a crumb, not a purée, nothing except vanilla pediasure (and don’t think she was fooled by the generic/cheaper brand) 😉 So nice to know I’m not alone!

    1. Thank you for your reply. My little guy is 2 and a half. He lives on vanilla Pedia Sure with Carnation instant breakfast mixed in for the calories. He doesn’t eat a bite of food either. I appreciate that I could relate to someone. Thank you!
      Tonya

  8. “Error on the side of grace” – so beautifully put. If we could all do this what an easier world it would be.

  9. Wow you have shared at a time my heart and head are so tired! I just said why do I have to feed these people all the time? When every meal and snack are a thought process it’s just exhausting. For us it’s one (12yr old)with significant food allergies and a sensory issue and my oldest(16 yr old) it’s sensory with food as well as the overwhelm of a meal. Can’t eat at a table near window might be drive by shooting(we live no where that would occur but to him it could), the noise of others chewing and swallowing, the smells, the temperature, the textures…. I am diabetic and have other health issues so it’s a food nightmare like you said all day every day. I have friends with kids who have food issues and are tube feeding and spending hours in feeding clinic so I am thankful for the skills we have. My one friend said to remember that no matter how much worse it is for her or others to remember not to minimize the challenge to honor and accept the feelings because must remember God wants to know our hurt. Being thankful is ok but shoving feelings down will be the beach ball underwater that wears you out to hold down and will pop up and smack you in the face!!! Thank you for sharing and reminding me it’s ok to feel and share the challenge.

  10. Ah Shawna, your words remind me of the saying, “There but for the grace of God go I”. You’re the very best Mom to your son. Your words uplift me.

  11. Just seeing this now, two years later… thank you for writing this, I don’t think anyone fully understands how hard it is until they are there…and when others understand, I feel less alone

  12. I’m crying reading this. It’s so real at my house and my stomach is sick at seeing my son and hearing him say he’s not hungry. He’s dropped six pounds in a month and he cannot afford to lose even one. I’m desperate to get him to eat and I’m mixing protein powder in practically anything it can hide in. Thank you for letting me know I’m not alone in this struggle. It means so much to draw strength from the knowledge that others have been there and are fighting to overcome it.

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