What This Popular Story About Disability Doesn’t Tell You About Disability


Have you heard of that written piece, “Welcome to Holland”? It’s a beautiful descriptive piece about raising a child with a disability. If you haven’t read it, you really should. Read it here.

Isn’t that nice? Sometimes it’s brought me to tears. If you didn’t click the link above, know that the story’s author compares getting a diagnosis to planning a trip to Italy and unexpectedly ending up in Holland.

Well, folks, here’s what they don’t tell you at the end of that piece…

YOU NEVER EVER LEAVE HOLLAND.

It’s true. Yes, the time of diagnosis is devastating and makes you feel like your planet is off its axis. And it is. But all this becomes your new normal. You adjust.

But every now and then, you get smacked in the head with the fact that you are still in Holland.

TJ’s second grade arts night when the rest of the kids were pulling their parents out of the audience to dance that cute little Chinese dance they learned in music class? Yeah, I was standing in a windmill waving at the other families who got to dance with their kid.

In actuality, we were fleeing the premises, as TJ was showing signs of meltdown. He was DONE.

That play in fourth grade when all the school families were shoved into the high school auditorium for the play every kid was in? We were tiptoe-ing through the tulips in Holland.

We never even made it out of the house. TJ barely made it through dress rehearsal and declared “I’m not going back there! Don’t make me go back!”

(Yes, I know, the whole night was really, really long, and everyone we talked to said how lucky we were that we didn’t have to go. Well, it didn’t feel lucky. It felt like we were far, far away from everyone else.)

And now that TJ is a teenager, while every other teenager is really trying to spread their wings, hanging out with friends, going to the mall, cooking by themselves, getting dropped off at the movies with a buddy, we are tucked in our house speaking Dutch.

No offense to the Dutch, of course. I’m sure it’s a lovely language. But sometimes, it bums me out that we don’t get to watch TJ go through all these typical teenage things.

Now don’t get me wrong — we have amazing experiences on this crazy journey called autism. TJ and his brother, Peter, were alone last night at home while my husband, Sean, and I went out to dinner! In a different town! No texts from them at all! And they didn’t kill each other or burn down the house! I believe in miracles!

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And TJ is spreading his wings in his own way. He walks the neighborhood all by himself. Usually he takes a bag of goldfish crackers with him, so at least he’s properly carb-loading. And he is doing chores around the house, too. Yes, he puts the dishes away in places I never would have thought of, but it makes finding a mixing bowl so much more fun.

And he sure does say some funny zingers. He has the best sense of humor. And no filter helps, too. We are always laughing around here.

I know that hankering to leave Holland will come up again… who knows if TJ will ever drive a car? Or go to college? But you know what? We never thought he’d be able to stay alone with his brother while we went out to dinner, either. And he did.

So I guess, for now, as long as we accept that we will never leave Holland, we really ought to be OK.

It’s a good thing I love tulips!

This post originally appeared on I Don’t Have a Job.

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