Schizencephaly Awareness

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08/20/2025

Parenting a Child with Special Needs Is Nothing Like Welcome to Holland

If you’re a parent of a child with disabilities, chances are someone has handed you Emily Kingsley’s poem Welcome to Holland. It gets passed around like some universal balm, as if those words can soften the blow of a diagnosis or wrap up our entire reality in a metaphor about tulips and windmills.

But let me be clear: parenting a child with special needs is nothing like Holland.

It’s not a vacation. It’s not a scenic detour. It’s not “different, but still beautiful.” That poem is a fairytale that might make outsiders feel better about our reality—but for those of us living this life every single day, it falls painfully short.

It’s Not a Missed Flight—It’s a Free Fall

Welcome to Holland wants you to believe this journey is like expecting Italy and winding up in Holland instead. But when I got my child’s diagnosis, it didn’t feel like a detour to a neighboring country.

It felt like being shoved out of an airplane without a parachute. You hit the ground hard. The impact knocks the air out of you. You’re shattered, bleeding in ways no one else can see. But you don’t die—you get back up, because your child needs you to.
This isn’t a “change of plans.” This is survival.

It’s Not a Sightseeing Tour—It’s a Battlefield

The poem paints this picture of simply adjusting expectations and learning to enjoy new scenery. But this life is not strolling through museums—it’s combat.

Every day is a fight:
Fighting for insurance approvals.
Fighting for services that are constantly cut.
Fighting school systems that see your child as a budget line, not a human being.
Fighting exhaustion while never having the option to tap out.
You don’t return from battle with souvenirs. You come back with scars.

The Loneliness Is Real

Kingsley suggests that if you just open your eyes, you’ll find Holland has its own community of travelers. The reality? Most of us are walking this road alone.

Friends fade. Invitations stop. Family doesn’t always get it. Society moves forward, and you’re left behind—living a life most can’t fathom. Yes, there are others in the trenches too, but the day-to-day weight of this journey is often isolating beyond words.

There are no tulips here. There’s silence, there’s distance, and there’s the ache of watching life move on without you.

The Poem Minimizes the Grief

What I resent most about Welcome to Holland is how it diminishes the grief to something as simple as missing out on Italy.

This isn’t about canceled gondola rides. It’s about mourning the life I thought my child would have. It’s about the milestones that may never come, the uncertainty of the future, and the brutal truth that love doesn’t erase suffering.

The grief doesn’t vanish—it evolves. It comes in waves, weaving itself into joy, pride, resilience, and heartbreak so tightly they’re inseparable.
But don’t tell me this is a “different kind of beautiful.” That minimizes the cost of what we carry.

Why Welcome to Holland Is Dangerous
The reason so many professionals love handing this poem out is because it comforts them. It gives them a tidy way to explain away our grief and reality without having to sit in the discomfort of it.

It suggests we’re all on some kind of accidental holiday—just not the one we signed up for. But we’re not tourists. We’re warriors. Survivors. Parents who have been drafted into a life we never chose, with no exit strategy.

Welcome to Holland doesn’t honor that reality. It sugarcoats it.

The Real Story
Parenting a child with special needs is relentless. It’s terrifying. It’s exhausting. It’s isolating. It’s also filled with a love so deep and consuming it often feels impossible to put into words.

But it is not Holland.
It’s waking up in a land with no map, no compass, no guidebook—where you build the roads yourself, where storms come without warning, and where every small victory feels monumental because of what it took to get there.
It’s not tulips and windmills. It’s scars, grit, grief, and resilience. It’s the kind of strength you don’t know you have until it’s the only option left.

So don’t hand us pretty metaphors. Don’t reduce this life to a postcard. Don’t try to sell us on Holland.
Give us resources. Give us understanding. Give us people who are brave enough to walk beside us in the trenches.

Because this isn’t Holland. It’s something much harder, much deeper, and much more real. And the truth is—we deserve for it to be seen that way.

“We’re not tourists here—we’re warriors.” Stacy Warden — Noah’s Miracle

Available on Amazon: https://www.amazon.com/dp/B0FP9YB4V2?ref_=pe_93986420_774957520

Copyright & Creative Commons Notice
This essay is © [Stacy Warden], [2005]. All rights reserved. It is licensed under a [Creative Commons License, e.g., CC BY-NC-ND 4.0]. You are welcome to read, share, and distribute this work non-commercially, provided you give appropriate credit, do not alter the content, and do not use it for commercial purposes. Any other use, reproduction, or distribution requires prior written permission from the author.

07/27/2025

I didn’t realize until recently that it was an unpopular opinion that special needs parents should get paid to take care of their children. That whether your child is typical or special needs that their care should rest 100 percent on you financially.

I know sometimes it’s hard for people to realize I’m very different than your regular SAHM. That many of us leave our careers, our financial security, or ability to live above poverty level for our children who require round the clock care. And the majority of parents in the US actually don’t get paid to do what I do for Noah, but they are still forced to leave the work force to care for their children.

We are a cost savings to tax payers. The alternative would be thousands of children in institutionalized care. And that costs a lot more per child. Long term institutional, group or residential care annual costs typically ranges between $110,000 and $260,000, depending on the type and location of care. Most parents who get paid for unskilled care don’t even hit the 50K mark annually. Those like me who provide CNA skilled care perhaps 10-15K more, but we aren’t allowed to better our situation with a spouse that has a high paying job or moonlighting because you have to remain in a low income bracket with essentially zero considered assets in order to maintain SSI and other benefits.

And sure being a SAHM is a choice, but I wouldn’t consider what special needs moms (and some dads like Chris) as being much of a choice. We don’t have an alternative solution. Even sending Noah off to school and trying to work while he was there isn’t an option for a child as involved or medically fragile and even those children who are a little less severe than Noah who can attend are have parents that are so frequently called to pick up their child because they are having difficulty or medical crisis that needs to be addressed outside of a school setting. They would lose their jobs due to lack of attendance.

And I’m not performing in the home setting like a regular SAHM. I’m not off doing mommy and me play dates, or only focused on laundry, cleaning, or running my children to their extra curricular activities. I’m literally trying to keep a child alive, while balancing volumes of paperwork and red tape to do that, while then thinking about household chores that take the back burner. We are totally two different kinds of parents who are at home with children. And I do believe I deserve compensation for providing nursing care for my child that is beyond “normal” care for a typical child. Every parent in my shoes deserves it, and we need to push for national caregiver programs in all States.

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