It feels like I blinked twice and summer disappeared.
Just a few weeks ago we were looking forward to slower mornings, fewer alarms, and maybe, just maybe, a little more breathing room. Now the backpacks are coming back out, school supply lists are everywhere, and another school year is knocking at the door.
For most families, back-to-school season is busy.
For families like ours, it’s busy, but add a bazillion extra things no one else sees.
While everyone else is buying notebooks and new sneakers, we’re calling specialists for medication orders, updating emergency care plans, scheduling IEP or 504 meetings, trying to fit medical appointments around school (or vice versa), and wondering whether this will be the year our child can stay healthy enough to participate in everything they want to do.
And somewhere in the middle of all of that, we’re trying to manage our own anxiety while helping our children manage theirs.
It’s a lot.
I remember one school transition in particular that still stands out to me. My daughter was starting at a brand-new school in a new town after spending several years on homebound instruction. She was returning to school full-time, and the only familiar face she would see in the building was her older brother.
She was anxious.
If I’m honest, so was I.
So, I did what I helped countless families to do over the years as a child therapist: I made a plan.
I called the school during the summer to find out who her special education teacher would be. I introduced myself through email, explained a little about my daughter’s educational and medical needs, and asked if we could visit before school started. She graciously agreed.
That simple step had a huge impact in shaping the start of the school year.
My daughter walked the hallways before they were crowded. She found the location of her classes. She met someone who would become a safe person for her. The environment no longer felt quite so intimidating.
Next came the school nurse.
I scheduled a meeting with her before the first day of school and talked through everything: my daughter’s diagnosis, medications, warning signs, and what my daughter should do if she wasn’t feeling well during the day. Together, we created a plan before one was needed, instead of hoping everyone would figure it out if and when a problem arose.
Finally, I introduced myself to her teachers. Some conversations happened during Back-to-School Night, while others happened through a quick email. My goal wasn’t to overwhelm them with information. It was simply to begin building a relationship.
In doing these things, nothing about my daughter’s diagnosis had changed. But both of us felt different.
We felt prepared.
Over the years I’ve learned that preparation doesn’t take away uncertainty, but it does reduce unnecessary stress.
If you’re getting ready for a new school year, here are a few things that have helped our family.
Prepare your child before you prepare their backpack.
Visit the school if you can. Walk the hallways. Find the nurse’s office. Practice what your child will do if they begin to feel sick or need help. Talk through the “what ifs.” Children often feel less anxious when they know what to expect, even if they can’t predict everything.
Build your team early.
Reach out to the nurse, teachers, counselor, or special education staff before school begins. You don’t have to tell your entire story. Just start the relationship. Knowing the people caring for your child can make an enormous difference.
Get organized before the chaos starts.
Keep medication forms, emergency plans, physician letters, and important contact information together in one place. Future you will be grateful.
Prepare yourself, too.
Transitions are hard on parents. We carry so many worries that our children never see. Take a few minutes to check in with yourself. What are you most worried about? Which concerns can you prepare for, and which ones will require trusting yourself to handle them if they come?
Sometimes simply naming our fears helps to shrink them.
As parents of children with a rare disease, we spend so much of our lives preparing for the unexpected that it’s easy to forget how capable we’ve become.
You’ve navigated diagnoses you never expected, learned medical language you never wanted to know, and advocated for your child in rooms you never imagined entering.
This school year will bring new challenges. It always does.
But it will also bring new victories. Some big enough to celebrate, and some so small that only you will notice them.
So as another school year begins, remember this:
You don’t have to have all the answers before the first bell rings.
You just need a plan, a team, and the confidence that whatever comes, you’ll figure it out. Just like you always have.
By: Ronda Thorington, MA, LPC
August 2026
