FPIES Changed My Parenting Rules

FPIES Changed my Parenting Rules CradleRockingMama.com

When I was pregnant with Jed, I was super  nervous and excited. I wanted to read everything I could about my growing baby, so I signed up for the BabyCenter weekly pregnancy emails.

You know the ones…”your baby is the size of a kumquat and is doing _______”.

What it didn’t realize about signing up for those emails was that they wouldn’t stop once I gave birth!

I’ve gotten emails every month since Jed was born describing what he “should/could” be doing at each month of his life.

I’ve considered unsubscribing to these emails, as I know so many of my friends have, but every now and then I like to click on the links to see if he’s roughly on track.

A few months ago I got a new email: Your Budding Picasso.

It talked about how to handle my nearly four year olds growing art skills and creativity, and it was very disappointing for me to read.

The first year of Jed’s life, he watched exactly ZERO minutes of television. I was adamant that he be given time for his brain to develop properly, without the reported disruptions of infant brain development brought on by frequent television viewing.

I spent all day, every day, or his first year of life interacting with Jed; teaching him things, showing him how to “help” me do tasks around the house, letting him explore and play creatively.

It was exhausting at times, but so rewarding. Plus, I had the self-satisfaction of knowing I was doing the “right” thing for my son.

I was very smug, y’all.

Then I got pregnant with Zac, and I got “first trimester tired”.

It’s just about the only negative pregnancy side effect I ever dealt with during either of my pregnancies; I never had morning sickness, weird cravings, insane mood swings, or any of the other things so often reported by pregnant women.

I just got bone weary tired during the first trimester.

So tired that I found myself turning on the TV for 1-2 hours per day just to allow myself the chance to sit in the recliner with my feet up, while Jed played by himself and watched Thomas and Friends.

Still, I was only slightly outside the “recommended Screen time allowance” set forth for children Jed’s age, so I still felt smug and proud of my mothering skills.

The TV watching continued throughout the pregnancy, because even after my energy returned I found my body just didn’t have the stamina to keep up with Jed. He’s a very high energy child.

My goal was always to return to a “no TV” lifestyle, and I managed to reduce our screen time considerably once Zac was born.

Then we got our FPIES diagnosis, and my lofty goals all went to hell.

Crayons are dangerous. Markers are dangerous. Bubbles are dangerous. Dang near every art supply out there is either certainly a trigger or likely a trigger for Zac.

And Jed, in his 3 and 4 year old enthusiasm, does not easily remember to keep his art supplies in our designated safe zones.

I simply cannot police art supplies while cooking nine meals a day.

Every time we’ve brought out art supplies, Zac has managed to get a hold of something and had a mild to severe reaction.

Every. Single. Time.

So I’ve mostly given up (for now). And to keep the kids occupied while I’m cooking those 9 meals a day, the TV is on in my house almost constantly.

Recently I got fed up with the constant TV watching (honestly, I dislike having background noise in my own environment) and turned the blasted thing off.

My clever son, however, had other ideas. He taught himself that he can put a new DVD in the player, and it will automatically turn on and begin playing. So after 1-3 hours of quiet, independent play in the living room, I will be started by the sudden noise of the television starting a movie.

I’ve been foiled by a three year old.

Instead of living the way I’d intended, with a kids movie being an infrequent treat for my children, I find myself living the exact opposite.

It is now a special treat for Jed when I pull out art supplies and let him create.

It kills me.

On the plus side, I’m very strict about what they can watch on TV. Jed is the only four year old I know who uses words like “pteranodon” and “diplodocus” in his imaginative story-telling (thank you Dinosaur Train!), and he is  learning from the educational programs he is allowed to watch.

It’s just not ideal, and not what I’d had in mind when I was growing that little bundle of energy and attitude in my belly.

I keep trying; I bought Jed some beeswax crayons for his Easter basket and so far they have not been problematic for Zac. That’s a win!

In the lose column, however, were my efforts at bubble blowing.

The speech therapist suggested blowing bubbles as a good exercise for Zac to begin moving his mouth in different ways for better/more speech, so I decided to try a supervised session.

Jed loves blowing bubbles, but this was Zac’s first time to do so. He kept grabbing the wand and pressing it all the way on his lips.

Despite my quick lip-wiping every time he did it, within an hour of blowing bubbles he had a red rash around his mouth, and that night had a screaming fit where his whole body became rigid and he was inconsolable.

It was a minor reaction, but I just don’t see the joy of half an hour of blowing bubbles as worth a rash that lasted days and an hour of pain for Zac.

FPIES has changed my rules of parenting.

At least for a while.

One day Zac will be able to safely play with art supplies, and by God, when that day comes, my kiddos will be given every art supply known to man to get their Picasso groove going!

Until then though…”Jed? Do you want Dinosaur Train or Thomas today?”

What ways have food allergies and/or FPIES changed your parenting rules?

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11 Responses to FPIES Changed My Parenting Rules

  1. RPCVmama27 says:

    Are colored pencils also out?

    • Carrie says:

      Sadly, until Zac completely outgrows that desire to put everything in his mouth, I’m unwilling to chance it. We haven’t ever tried colored pencils, though, so they might be okay. He’s just so sensitive and so fast at sticking things in his mouth! I’m hoping once these two year molars are completely in, he’ll be past that stage and we can start using art supplies.

  2. Pam Schrock says:

    Well, I have a bubble idea for you. Take your empty drinking water bottles and cut the bottoms off. Cover the cut off bottom with a doubled up (folded over) cheese cloth circle or square attached to the bottle with duct tape. Make up a bubble solution that is 10 parts water to 1 part dishwashing detergent. Stick the bottom of the bottle in the water/detergent and blow on the mouthpiece end of the bottle. COOL BUBBLES!!!! Caution: just don’t suck in or your mouth will BURN!!!!!

  3. Amy says:

    We struggle with the TV thing too. Sometimes it’s just so easy to turn on & give us all a bit of downtime.

    Are there some products both boys can use? Sam will happily sticker colored construction paper & tell stories as she goes. She also likes cutting out pieces and making things with them. (don’t ask me what the things are. they make sense to her and that’s all that matters).

    And blocks – – we play lots and lots with blocks. Mega blocks, duplos, lincoln logs, little blocks with letters – she spends a lot of time building. And playing with her dalls in the forts and castles she makes. Those dolls spend a lot of time doing stuff.

    And sand is fun. There’s also a “drawing tablet” that someone gave her a few birthdays ago. It uses water in a “pen” that turns the tablet blue or red. Sam’s never tried to get into the material, but that would be my only watch out for the boys. Whatever makes it turn color may be a trigger…

    But yeah, bottom line is that avoiding TV takes more than we are willing to give all the time. A little Einsteins, Max & Ruby, Mickey’s clubhouse – – it’s not going to hurt her.

    Good luck!

    • Carrie says:

      Thanks, Amy. 🙂

      Zac has only been ‘safe’ around paper for a few months now. Prior to that, paper was one of the things that made him have an acute reaction so we banned all books and construction paper from kid access. We’ve been able to let him have books for a few months, though, with no ill effects, so construction paper might be able to make an appearance!

      Blocks are tricky; most wooden ones are out because the shellac or paint used on them causes him to react. Legos are a decent idea; we have some, but the boys actually aren’t that interested in them yet.

      The jury is still out on sand. I know of several FPIES kids who have reactions to sand, but I went ahead and put sand in the sand table and the sand box of their new swing set just to see. So far, I’ve noticed him eating the sand, and we’ve also had some weird reactions this summer since about that same time. I’m not sure it’s the sand, or if it’s the food we’re trialing him on, or the teething, so sand is still a potential “sorry, kiddos, we have to take that away, too” thing. But he loves it!

      We’ve gotten them those magnetic drawing boards and they adore them, but they’re REALLY hard on them and they don’t last long before they stop working! LOL

      I definitely try, though. And I’ll keep trying. You’re right. TV isn’t going to hurt them…at least, not as bad as soy and corn filled toys will! :-/ It’s just not what I pictured when I thought of my kids youth, you know?

      The swing set has been a definite boon in the “get the kids away from the TV” efforts, though! I can find a project I can do sitting on the back porch, and send the kids out to play. They get some independence, some time where Mommy isn’t RIGHT THERE, and I get something done with no interference while still being able to make sure they don’t run off to the barn or the road. It’s been awesome! 🙂

  4. FPIES has definitely changed my “rules” but it has also allowed me to keep some that I otherwise probably would have caved on eventually. The biggest thing for me was that I never wanted to pacify my child with food. It’s such an unhealthy habit but so many people do it! FPIES has totally prevented me from ever using food as a way to keep my kid quiet and happy and I am so grateful. Instead he has found healthier ways to cope with boredom, like reading! Have you looked into the Colorations art supplies? They are sold on discountschoolsupply.com and have been a life saver for us. So far the crayons and finger paints have been safe for us. They advertise that they are free from a bunch of common allergens and their customer service is great and are always able to confirm that they are free of E’s allergens within a couple of hours. I have ordered from them twice and both times got the products the next day! Maybe they would work for you. Good Luck!

    • Carrie says:

      Oh, wow! Thanks for the suggestions! Every time I think to investigate art supplies I can’t find the thread on the boards. This is great! 🙂

      You’re such an optimist – I love it! That’s a good point about the food thing. I never had any image in my mind of what I would feed my kids pre-childbirth, but I’m so grateful now that my kids will grow up thinking CAFO meats and non-organic produce is disgusting, and probably won’t eat a Dorito until they’re teenagers (or in college). LOL

      There’s always a silver lining, isn’t there?

  5. DP says:

    Well, I understand the frustration of not allowing them to use almost every art medium made. It’s awful for the boys as well as us. It’s almost as frustrating as it is for us as Grandparents never being allowed to drop by for a snowball, ice cream cone, or a bag of fries. With Grandma’s cake decorating skills it drives her crazy not being able to make the kids a cookie, cupcake or pie too.

    I agree with the TV thing but have to be amazed every time the boys are over for a visit. We don’t have Netflicks or anything “fancy” where you can pick and choose cartoon type programs. We can only get a couple of their favorite shows and only at specific times. BUT……we do get a ton of cooking shows and whenever one comes on both boys are glued to the TV and run to the TV stand and go in to a trance watching them. It’s wild to see! Jed actually gets annoyed if you interrupt him while watching them. They have no idea what most of the food actually is but it mesmerizes them completely. Maybe they will turn out to be great chefs in spite of all the food issues they have to endure?

    DP

    • Carrie says:

      Thanks, Daddy. 🙂

      Now that I have a good icing recipe, maybe mom can make Jed something amazing!

      I love your stories about the cooking shows. Since we don’t have them at home, I never get to witness what you describe. But I wish I could see it some time.

      One day they’ll outgrow a lot of this (I hope), and maybe then you guys can enjoy a hot dog at an Oriole’s game. 😉

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