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On Labor Day, 2014

photoI’m not usually one for writing contrived holiday-themed posts here (“It’s Arbor Day, folks, and special needs families just love trees!”), but I think I’m going to make an exception for Labor Day. There are a lot of hard working people in this country, but those of us in the world of disability parenting find ourselves surrounded by the hardest working humans on the planet. For our kids, finding success in school and in the world is a lot like being an astronaut. We understand that the person standing on the moon is an extraordinary individual, and we celebrate that person’s achievement. We do so, however, with the knowledge that it took a team to support those efforts and help that astronaut arrive.

Our kids are reaching for the moon, and the stars. They depend on the extraordinary efforts of a lot of people in order to get there. The U.S. Department of Labor describes Labor Day as “a yearly national tribute to the contributions workers have made to the strength, prosperity, and well-being of our country”. It’s appropriate to focus on the work done in disability advocacy and support, I think, because our nation is made better when we recognize and encourage the vital and equal place that people with disabilities occupy in our society. As Americans, we’re not always very good at that.

This past week was Schuyler’s first at her new high school, with a whole new special education team and a new environment for her. The earliest interactions we’ve had suggest that she is going to be in very good hands. We had a brief scheduling issue that looked like it could derail things in a hurry, but some quick and innovative thinking on the part of the new special education director provided a solution that worked perfectly for everyone. She didn’t have to do that. There were imperfect solutions on the table, but she didn’t take the path of least resistance.

Schuyler’s teachers at her new school, special education and otherwise, have taken up the challenge of teaching an unusual student (and one with a tremendous pain in the ass for a father, it must be said) and are running with it. In a larger sense, they’ve created an academic environment where a kid like Schuyler is already finding acceptance among her peers, and that is something that simply can’t be appreciated enough.

When I watch the friends and professionals I’ve met talk about the work they do for the kids and adults with disabilities who are under their care, time and time again I see people who fight hard for some pretty incremental advances. They understand how important the small steps are, and the accumulative effect those advances have on the spirit of those clients and their families. It can be tough, working so hard for those baby steps. The best among them understand how gigantic these tiny movements really are.

Most of all, on this Labor Day, I want to acknowledge my fellow parents of kids with disabilities. Our work is central to our kids’ success, and yet I feel like a lot of parents are often misunderstood and wildly under-appreciated. Some people like to say that God never gives you more than you can handle, but special needs parents understand all too well how untrue that really is. We follow other parents and their stories, and when one fails, when one is unable to cope or find the supports they need, we don’t condone their failures, but we understand. Our own fears are populated with thoughts of what could happen if we aren’t up to the task.

The truth, or at least the truth as I’ve come to understand it, is that most of us are more than capable of the task. Some of us work silently, others write about our moments of frustration and desperation, but we’re all working through our own hard things.

The reality that perhaps we don’t convey as well as we should, however, is that when things are difficult, they’re still worth it. Our kids are human wonders. Our lives are enhanced in ways that we can’t begin to express, and when our kids find success, we are filled with the most intense satisfaction, brighter than the sun. We try to describe how this satisfaction feels to our friends and families with typical kids, but mostly we just quietly understand that if you knew how enriched we are by the lives of our kids, your uncomprehending pity would turn to the greenest of jealousies.

That’s the secret of our work, for parents and professionals and persons with disabilities themselves. On this Labor Day, I want to thank everyone who does that work, which is rarely easy but is always divine in the strictest sense of the word. But in a hushed whisper I also want to say to you all, “It really is pretty wonderful, isn’t it?”

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