Show notes
Back-to-school season can bring a lot more than new backpacks, school supplies, and first-day photos—especially when you’re raising a child with Down syndrome.
In this episode, Heather, Micha, and Mercedes talk honestly about the complicated feelings that come with starting a new school year. From new teachers and IEP meetings to inclusion, friendships, behaviors, and the pressure to make sure our kids have the opportunities they deserve, sometimes “back-to-school anxiety” is really a mix of fear, grief, frustration, comparison, and the exhaustion of knowing how much advocacy may be ahead.
Micha shares about preparing for Ace’s transition to middle school and advocating for the movement and sensory support his body needs to learn—and even to sleep. Mercedes opens up about the unexpected pressure she feels as Sunflower enters seventh grade and the milestones she thought they might have reached by now. And Heather shares the weight of sending Macyn into her senior year after an incredibly difficult school experience, while still fighting for something every student deserves: to be a meaningful part of their school community.
They also talk about the comparison trap—especially when social media makes it look like everyone else’s child is having the school experience you hoped your child would have—and the reminder that we rarely know the whole story.
But this conversation isn’t about pretending everything will be fine. It’s about making room for the hard while still holding onto hope.
Maybe we don’t need to have everything figured out before the first day. Maybe we can simplify our goals. Maybe instead of measuring a successful year by achievement, we can ask:
Is my child known?
Do they have a friend?
Are they included?
Do they know they belong?
And when the world outside our homes doesn’t always get inclusion right, we can still create homes where our kids know without question that they are valued, adored, and that they belong.
Why back-to-school season can bring unique anxiety for families raising kids with Down syndrome, including emotions like grief, comparison, and uncertainty
Real-life transitions and advocacy: new school years, changing grades, and supporting sensory, social, and inclusion needs
Reframing success and belonging by focusing on inclusion, self-worth, and creating supportive, radically inclusive home environments
You don’t have to have everything figured out before the first day.
You can change course when something isn’t working. You can ask questions. You can advocate. You can feel nervous. And you can hope for a good year without pretending that some parts of it may be hard.
Your child’s worth is not measured by their progress.
Here’s to a school year where our kids aren’t simply present—but known, valued, included, and loved.
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Here’s to shifting the narrative for people with Down syndrome.
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