How Can an EA/TEF Parent’s Anxiety Be Held in Check Before their Child Starts School?

by jphilo | Jan 8, 2025 | Different Dream, How-Tos, School/Education, Special Needs Parenting

How Can an EA/TEF Parent’s Anxiety Be Held in Check Before their Child Starts School?

How can an EA/TEF parent’s anxiety be held in check before their child starts school? Karena Skibinski began asking herself that question several months before her son started preschool. In today’s post, which is part of Different Dream’s ongoing series for EA/TEF Awareness Month, Karena writes about six actions that helped her the most. She hopes they will help you too.

Three years ago, we were still in the thick of our NICU stay with our son, Lincoln. Shortly after he was born, he was rushed to the nearest children’s hospital (which, turns out, is one of the best in the nation) and was then diagnosed with Esophageal Atresia (EA), Type C. Two major surgeries, one G-tube, and 87 days later, he was discharged. His first 18 months were a blur and were filled with various doctor appointments, dilations, scopes, and various therapies.

Fast forward to now. He turned 3 this past October, and things have been going well. Instead of all of those appointments, our days are filled with nature walks, Lego, potty training, playing with his big brother, and trying new foods. Lincoln reached a big milestone in August. He started preschool. He attends the same preschool as his big brother, so he was somewhat familiar with the building, some of the teachers, and the general morning/pickup/drop off routine.

I was a different story. Aside from when Lincoln was discharged from the NICU, his starting preschool was what I was most anxious about. This would be the first time he’d be in the care of someone else, as we made it work for me to stay home with him those first few years. I had so many questions. How would he adjust? How could the teachers keep an eye on him with so many other kiddos in the classroom? What about the sickness that inevitably comes along with starting school? All of these questions—and about 100 more—were swirling around in my mind at least a few months before the first day.

Here are 6 things that made the transition to preschool easier for our family.

Therapy for myself: I’ve been in therapy for several years now, and it’s been one of the best things for my overall well-being. I am a huge advocate for therapy! It’s truly wonderful to have a scheduled space with a trusted therapist to continue processing the trauma related to Lincoln’s birth and the fears that go along with raising a medically complex child.
Implementing a solid general routine: This is foundational for any kiddo, and there is lots of research supporting the efficacy of a good routine. It builds predictability, which in turn builds confidence and space to learn, explore, and grow.
Meeting with the teachers beforehand, and ongoing open communication: Our school gave us the opportunity to meet with Lincoln’s teachers a couple weeks before school started. We also filled out paperwork related to general topics about Lincoln (e.g. what he likes, what he doesn’t like, etc.) as well as about his medical background, and a general mealtime plan that we went over face-to-face. This gave me peace of mind!
Getting a copy of the breakfast/lunch/snack menu and being in touch with the school chef: We went through the menu and identified foods that Lincoln may need modified or substituted (e.g. carrots, grapes). This is kept in the kitchen.
Providing a copy of this informational handout as well as a document that contained all of Lincoln’s medical background/medications: I found an outline similar to this in one of the EA/TEF Facebook groups that I am in. I emailed the completed document to the school about 4 months prior to Lincoln starting school. It was a way to get communication started about his condition. I’ve provided a short, one-page document with Lincoln’s medical background and medications. It is kept in his file at school. Should EMS ever need to be involved, the document provides them with quick information related to his medical needs.
Providing “just-in-case” items: I’ve heard some families provide yogurt for their EA/TEF kiddo to have during lunch time, but we’ve only provided a small can of Coke for the teachers in case of a “stuckie.” Coca Cola has been most beneficial for Lincoln in that situation.

Lincoln’s been in half-day preschool 4 days a week for one whole semester now, and things have been better than I could’ve imagined. Luckily we have had no issues, and going to school has had a positive impact on his overall development and our family dynamics as well!

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Photo by Mourizal Zativa on Unsplash

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Karena Skibinski is a mother and occupational therapist. After taking a few years off to be home with her children, she recently returned to working weekends in a hospital setting. It’s been such a blessing to her and her family. When she’s not busy running around with her two boys (Lennox is 5 and Lincoln is 3) or working, you can find her in the kitchen trying new recipes, going on long walks with her two pups, or taking an afternoon nap. Through her work, her mission is to bring more awareness to EA/TEF and to provide reassurance to EA/TEF families that they aren’t alone.

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Special Needs Homeschooling: The Ups and Downs

Special needs homeschooling is full of ups…and downs. Guest blogger Lisa Pelissier knows this from experience. In this post she describes her adventures in homeschooling, which began long before she discovered she had joined the special needs homeschooling tribe.

I wanted to homeschool before I even had children. I didn’t even need to make a list and check it twice to weigh one side against the other.

I wanted to raise my kids to love God.
I wanted to spend time with them and have them spend time with each other.
I wanted to do all the fun things you can do with little kids, like growing bean seeds, dressing up like Ancient Romans, and making Native American huts out of hot glue and cardboard for authenticity, of course. (See image below—lol).

I dove in, not without some fear because I didn’t know what I was doing or how it was going to turn out.

When we began homeschooling, I was a mom of two little boys, then almost five years old and eighteen months. It didn’t take me too long to figure out that homeschooling was harder than it looked. Entertaining a baby while trying to teach Latin and Greek to a disinterested four-year-old (I was ambitious in those days) kept me on my toes.

But there was something else going on, too. Every subject was a battle. Once my son got used to addition, then came subtraction. It was something new, and therefore something that must be rejected with howls of misery and a tantrum on the floor.

When I tried to teach him to spell, he told me he didn’t really care how other people spelled things. He was going to do it his way. It took me five years of struggle before I convinced him that it might be nice if other people could read what he wrote.

When he was nine—and I had a baby girl and another on the way, we got his autism diagnosis. My construct of a happy homeschooling family fell apart. Nothing had changed. But, if my son had anything to say about it, nothing ever would. He was going to protest every new thing I taught him. He was going to be difficult. And he was. He’s a lovely human being. But he’s a pain in the butt to teach.

When my second boy was twelve, he got sick with PANS (see my previous post here for more information). My world fell apart for a second time. By the time he graduated from high school, he was on his way to good health, at last. Then my girls got sick. In the midst of their difficulties came the divorce. It’s not been an easy road for any of us.

But through all the illnesses, both neurological and physical—depression, anxiety, dyslexia, dysgraphia, dyscalculia, OCD, autism, PANs, and more—homeschooling has been a blessing. I’ve been able to tailor our studies to accommodate my kids’ disabilities.

One of them needed everything read aloud—and I mean everything—to him all the way through school. So we read aloud.

One needs to travel the schooling path more slowly and more independently, so I’m able to scale back.

It doesn’t matter if they graduate on schedule or much later than their same-age peers. It matters that they’re still making progress. And they are.

Has it been hard on me? Absolutely. Would I change it? Uh… some days I want to move to Italy and never look back. But the rest of the time, I’m grateful for the journey we’ve had, as I get to know my kids better, to understand their struggles, and to understand myself as we continue to navigate the ups and downs of special needs homeschooling.

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Photo by Aaron Burden on Unsplash

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Lisa Pelissier lives in Oregon where she is a homeschool mom and author of five middle-grade fiction novels, the second-grade Monsters series, and a YA fantasy novel. Lisa owns SneakerBlossom Books, offering Christian, classical homeschool Study Guides and curriculum. She blogs at Eleventh Willow, offering encouragement for Christians parenting the mentally ill. She also works as a freelance copy editor, copy writer, and a marketing editor. In her spare time Lisa enjoys playing the piano and writing books.