We Get More Than 18 Summers

Many of us are back at school with fresh tans from summer vacations, telling friends about the places we went and the fun we had. We are settling into new classrooms, new routines, and the blessed return of predictable bedtimes, all while beginning the serious work of deciding what everyone will be for Halloween.

At my house, Halloween planning is well beyond the “beginning” stage. My home and office have been slowly turning into Hogwarts for two weeks. At this rate, I’m one floating candle away from receiving an official complaint from the Ministry of Magic.

As summer ends, many of us conduct a quiet postmortem: What worked? What fell apart? Which supports actually showed up? What do we need to start planning now if we have any hope of making next summer more manageable?

And somewhere in that exhausted debrief, while your already overextended brain is sorting through staffing gaps, disrupted routines, and everything you will have to do differently next time, a familiar phrase starts rattling around like one more thing you are supposed to feel guilty about:

You only get 18 summers with your child.

It is meant to make us slow down. To remind us that childhood is brief and that the years of family vacations, backyard sprinklers, and sticky popsicle hands will be gone before we know it.

But most parents don’t really get only 18 summers.

They get visits home from college. Family vacations with adult children. Holidays at the lake, weekends at the beach, and summers when grown children bring partners, and eventually children of their own, back home.

The summers change, but they do not simply end.

For parents of children with significant support needs, the phrase feels incomplete for another reason.

We may have far more than 18 summers.

We may have every summer for the rest of our lives.

And summer, for many of us, is the hardest part of the year.

While other families are posting countdowns to the last day of school, many special-needs parents are quietly bracing themselves. School may be imperfect, but it provides structure, routine, trained staff, therapies, predictability, and somewhere our children are expected to be.

Then summer arrives, and much of that disappears.

Programs are limited. Camps are not equipped to support our children, or say they are, until our children’s needs become inconvenient. Therapy schedules change. Familiar staff take vacations or leave altogether. Extended School Year services may offer only a fraction of the support provided during the school year, assuming a child qualifies at all.

The system that insists our children need consistency spends every summer dismantling it.

For children who rely on routine, this abrupt change can lead to profound dysregulation. Sleep changes. Behaviors escalate. Skills can regress. A child who worked all year to tolerate transitions, communicate a need, or participate in the community may suddenly be asked to navigate long, unstructured days without the people and supports that helped make those things possible.

Parents fill every gap.

We become the teacher, therapist, behavior support, activities director, chauffeur, case manager, and full-time caregiver, often while continuing to work and care for everyone else in the family.

There is no break in care because school is on break.

There is no carefree summer simply because the calendar says there should be.

Veteran special-needs parents know this. We have learned not to be seduced by the glossy promise of summer. We know how quickly a new program can fall through, how hard it is to find a qualified caregiver, and how one staffing change can unravel a carefully built plan.

We know that “just take them to camp” is not a solution.

We know that spontaneity is a luxury made possible by support.

We know what it is like to dread a season everyone else seems thrilled to welcome, and then feel guilty for dreading it.

That guilt can be its own kind of loneliness.

We love our children fiercely. We also understand what summer demands from them and from us. Love does not make continuous caregiving easy. Gratitude does not replace sleep, support, safety, or access to appropriate services.

And exhaustion is not evidence that we love our children any less.

When I hear that I only get 18 summers, I sometimes wish that were the worry.

Our worry is not that our children will grow up, leave home, and become too busy to vacation with us.

Our worry is whether they will ever be able to live safely without us.

We wonder how many summers we will spend coordinating care. How long our bodies will be able to meet their physical needs. Whether there will be appropriate programs for adults, qualified people willing to do this work, and funding sufficient to provide more than basic survival.

We wonder what summer will look like when our children are 25, 35, or 55.

And beneath all those questions is the one that special-needs parents carry everywhere, even when we do not say it aloud:

What will their summers look like after we are gone?

Who will notice that the change in routine is causing distress?

Who will know what their movements, sounds, silence, or behavior are communicating?

Who will make sure they are included, not merely supervised?

Who will protect their dignity?

Who will love them enough to keep asking whether their life is full, meaningful, and truly their own?

The problem is not that we may have more than 18 summers with our children. More time with someone we love is not a tragedy.

The problem is that families are expected to carry those summers largely alone.

We do not need reminders to treasure every moment. We need dependable support. We need inclusive recreation, adequately funded services, trained caregivers, meaningful adult programs, and communities designed for people whose needs do not disappear when childhood ends.

We need systems that plan for a lifetime, not systems that quietly withdraw once a child ages out.

So when summer approaches, some parents feel nostalgic about another year passing.

Some of us feel fear.

We count staffing hours, therapy gaps, medications, safe activities, and the number of weeks until school resumes. We try to create moments of joy inside a season that asks too much of our children and far too much of the people caring for them.

We are not wishing the summers away.

We are wishing we did not have to survive them alone.

Eighteen summers were never the promise for our families.

We may get a lifetime of them.

And apologies for the unexpected slap in the face from mortality, especially after luring you in with Hogwarts. But as we enter spooky season, it seems appropriate to say this out loud: for many of us, the spookiest thought is not what goes bump in the night.

It is who will stand beside our children when we no longer can.