A while back, I started researching how to make dental visits go more smoothly for kids with special needs.  Figuring I probably wasn’t the only parent out there who wanted to know—and finding a bit of a dearth in that department—I pitched an article and it sold.  So, armed with my assignment, I got to talk to a few dentists about this very important issue.  This article in Georgia Family Magazine was the result.

I put my research into action, and Alex’s and Ben’s dental visits went more smoothly.

Recently, the same idea sold to a non-competing magazine, so I wrote a new article with new sources.  I got to talk to even more dentists, and this time the people I talked with specialized in caring for patients with special needs.  And Tuesday I had the opportunity to test out some of their advice!  Suffice it to say, it works.  Ben’s appointment went great!

I’m expecting the article to be out in MetroKids next month.

And that’s the great thing about what I do.  I get to talk to people about questions I know parents want answers to, because I want answers to those questions, and then I get to write about it.  Sounds like a win-win to me, and I think Ben would agree.

Furthermore, my research about autism and diet or autism and feeding would often turn up results that I had no interest in. I’m referring to GF/CF diets, herbal supplements and the like, all claiming to alleviate or cure autism to one degree or another. Now, I readily admit we tried the GF/CF diet, which turned out to be a good way to starve our kids. (Not that we let it go that far.) After all, the reason that Alex was on the verge of failure to thrive was because he’s very stubborn about what he will and will not eat; and bread that is GF/CF is not, to Alex’s mind, actually food. (Honestly, I’d have to agree with him on that.)

Later, I stumbled across some information, but it was written by researchers for researchers or medical professionals, not for parents. Occasionally I’d stumble across a pertinent article, but rarely did it offer anything new or insightful.

Now, Alex and Ben are both doing well. They’re gaining weight. Both of them actually have a visible layer of fat around their muscles! As much as obesity is a problem in this country (and a personal problem, in my case), fat on my kids is good. They’ve got plenty of energy, which wasn’t really a problem for Ben, but it used to be a problem for Alex. They’re both expanding their diets and getting the nutrients they might otherwise lack through prescriptions of PediaSure. In short, they’re thriving.

It’s been a long road and now that we’ve traveled so far, I’m hoping to gather information from reputable sources and create a guide for others to use, the kind of guide I wish I’d had.

Along those lines: Do you have experiences with feeding issues? Would you like to share them? What questions would you like answered? Let me know in the comments or contact me directly.

With this possibility in mind, I would like to ask: What would you want to know? What mystifies you about special education? What frustrates you? What problems do you want solutions for? What insight, ideas, and interests do you have?

Are you a parent with a child who receives special education services? Are you a special education professional trying to do your best for your students?

Please leave a comment below or contact me directly with your answers.

When I first started this blog, I had a book in mind. It was something of a cross between a memoir and an advocacy piece. At the time, I wanted to make the idea viable for traditional publishing, and for the intervening years I didn’t see a way to do it. The audience it could be expected to reach within the first year or two of publication just wasn’t large enough, not without changing the focus of the book dramatically. For the last two years, I’ve been researching self-publication, and I find I’m drawn to it—at least as far as nonfiction goes. The relatively narrow audience for the book doesn’t matter nearly as much if the book is self-published; if you have the skill and wherewithal to market the book, you can profitably self-publish a book with a narrow audience.

So, in turning away from Neurodiversity at Work, I’ve come full-circle back to my first book. This time I’m not dwelling on how to make it marketable to a traditional publisher; I’m dwelling on how to make it a book that fulfills a need for its audience. It will never be a bestseller, and that’s fine. This book, like this blog, is for people who already care, for people who want to understand autism in a way that doesn’t reflect our fears of difference, but instead reflects our desire to understand, uplift and assist those we love who carry the diagnosis.

In outlining and writing this book, I’m taking great care to ensure one important difference that sets my book apart from so many parent books: I’m not telling my children’s stories. Of course, it’s this difference that will make it less appealing to traditional publishers. Embracing Chaos: Discovering Autism and Neurodiversity will tell my story. In this book I will describe how I came to see autism and neurodiversity, explain why I have the priorities I do when it comes to raising my children and advocating for change, and invite others to join me. I’ve seen so many books that purport to tell the stories of autistic children, while really advocating for whatever treatment or approach the parent chose for their child. Those books, the kinds of books published by traditional publishers, promise a cure, a recovery or some other conclusion that promises a semblance of normality. My book will show that normality doesn’t have to be a goal, while arming those seeking a different path with insight and resources to help smooth their journey.

But it’s not just a book for other parents. There have been so many times when I have tried to verbally explain to those on the periphery of our lives what I believe and why. Often, due to my own struggles to communicate verbally, it seems necessary to direct them to my blog and the list of blogs on my sidebar to really make the point. This is fine for those who are comfortable in the blogosphere, but many aren’t. If I had a resource, a book, that could explain it—I would gladly have directed them to that instead. And this, for me, will be that book. But while it will be my story, my journey, I also want this to be a book others can hand out to those on the periphery of their own lives. So, it’s not a traditional memoir, either. It is intended to be a source of information and understanding for those of us who refuse to take sides, or rather for those of us who feel that there are answers and truths evident in multiple arenas within the autism community. (After all, it would be disingenuous to suggest we don’t take any sides at all.)

I hope it’s well received by those for whom it is intended, by those who—like me—feel they need a resource, a reference, a tool to stave off those exhausting conversations in which we try to justify to those who mean well why we, too, are not adamantly advocating for a cure. I hope it’s also a book that adult autists might read to gain insights into us parents who, while not supporting and agreeing with everything they say or do, really are allies in our goals to make this a better world for all those deserve to be heard, appreciated, understood and accommodated.

That is my hope. Only time and publication can determine if I will achieve those goals. But I have to try. I have to set the stage. Then, I have to move on to other issues that need to be addressed.

Sometimes it takes longer for our lives to align properly than we’d like. Sometimes, especially when you’re me, you stubbornly head in the wrong direction like a bull with a bit in its mouth. And yes, I’m the bull. Sometimes things have to come crashing down in dramatic fashion for you to question what it is you’re trying to build here—and why.

Why? Good question. Of course, the answer was there all along—but, well, bulls with bits aren’t always so good at abiding by intuition.

Throughout my adult life (since I had my first child when I was barely 19 years old, I do mean my whole adult life), my writing aspirations and raising my children have done this awful dance that ended with both halves of myself stomping all over each other’s toes. Being the stubborn bull and poor dancer that I am, I tried to force them to align. I tried to break them up and put them off in their own separate corners. I tried to make them sit up straight and play nice.

Needless to say, that didn’t work so well. Go figure.

I believe our lives fit to a plan not of our making. While I believe we make choices, and inevitably pay the consequences of those choices, I believe there is more outside of our control than is within it. All I can really control is how hard I work, and I’ve worked pretty darned hard. But the timing, the confluence, the ever-elusive alignment evaded me.

Until now.

I’ve accumulated the experiences I need. I’ve developed my craft. And I’ve found someone who, while not officially claiming the title of mentor, is certainly behaving as a mentor would.

While it is not my intention to evoke the horrid autism-as-puzzle concept, I must say that the pieces of my life that I’ve tried to force into place have finally taken a shape where they simply fit together to make a beautiful vision of what’s to come.

Right now I’m trying to plan that vision—with enough flexibility and potential serendipity to avoid a repeat of that word-image of two bulls dancing through a glass house.

(shudders)

Explanation aside, here’s a little bit of what I have planned for future posts to make up for not actually having any of them ready:

• The Threat of Burn-Out (a response to Rachel’s first book, amended by reading her second)
• Recommended Reading (reviews of Rachel’s books)
• Embracing Chaos…Again (why I have to start with my first book…which seems rather obvious in retrospect)
• A Vision for the Future (in which I make cryptic references to plans that I’m not ready to disclose in order to whet your appetites and build support for a long-term, collaborative project—how diabolical of me)

Stick around. New Train + New Track = Better Content!

For me, order isn’t necessarily a matter of constructing a daily routine. I’ve never found a good way to bring order to my day in the sense that I know what I’ll be doing and when. If nothing else, the irregularity of my sleep cycle interferes with that in problematic fashion—something to work on, definitely. I prefer order to start on a more macro level. I need to have goals for my life, and I set those goals at least five years out. Then I need to break those goals down to what I want to achieve in a given year, a given month, a given week.

The problems I encounter are two-fold. First, I set the wrong goals. Second, life intrudes on my sense of order. In the last two years life has intruded a great deal. Very few of my plans have worked out. Many of those goals were just the wrong goals or the right goals at the wrong times. My goals also lacked a necessary balance—I lacked goals that would improve or maintain my own health and well-being, like getting sufficient sleep on a predictable basis. The rest of it was the natural chaos that results from this messiness we call life. And, of course, I wanted to more than I was able to in the time provided.

Recently, this has all come to something of a head. My train, rumbling ahead at high-speeds, derailed. The aftermath was devastating. It wasn’t just a single point coming on done; it was the accumulation of my chaotic life paired with major and minor goals coming unraveled, seemingly one on top of the other before I could cope with the first. The cars piled up. The result was an inner life more mangled than manageable and an outer life that hasn’t been working for far longer than I’ve been willing to acknowledge.

Sifting through the wreckage has taken some time. Making sense out of the pieces, identifying where I went wrong, and discovering ways to fix it have also taken time. The process isn’t complete, either. But I’m laying new track—setting a new course—and picking out new cars to put on the train that is my life.

Order doesn’t come naturally in this chaotic world. We have to make it where we can, how we can, though often it’s merely illusion. Sometimes I forget that last part.

The end result was flawed. I haven’t even figured out how much work will be involved in order to turn the project around. But the flaws themselves provided a remarkable amount of clarity.

Autism was a major feature of this short story. Typically, I write speculative fiction, and autism or autistic characters creep into my stories even there. But this piece was supposed to be written in the literary style, and thus I wrote a story about something a bit more mundane. I remembered a writing teacher once telling me that people don’t write stories about “housewives,” because they never do anything worth telling. So, as per my contrarian nature, I wrote a story about a housewife—particularly the mother of two children with autism who is also almost autistic herself.

The clarity came, not from the story itself, but from the various reactions to my story. My readers—those individuals who are part of my life and who read most of my work—found the story compelling, clear, and approachable. My classmates—individuals who are not immersed in the world of autism—found the story compelling, but not as clear or approachable as they would have liked. The difference, of course, is how familiar the reader is with autism.

Thus the flaws. As a writer, I cannot rely on my readers being familiar with my subject matter, especially when the “point” is to show a different perspective concerning the subject matter. Which is not to say that this story is an advocacy piece. Nor did I intend it to be. But, in a way, of course, it is. In a way, everything I write about autism is an advocacy piece, because most of the dialogue on autism is still so…wrong. But, whether an advocacy piece or just a story, the point is to communicate to the reader on behalf of the characters, and relying on a shared perspective doesn’t do that.

Sometimes I forget how much I have changed, how much my perspective has changed, how much the way I see the world has changed, since I fell into the world of autism. It seems so strange to me to look at it that way, because I’m finally where I belong.

The deeper I got into the project—accumulating research material, writing chapters, delving into the heart of the how-to—the more I grew wary of my topic.  More and more of my revised pages were devoted to the importance of opening up organizations to the neurologically diverse; fewer were devoted to the practical aspects of how to accomplish this goal.  As I’ve progressed I realized something as a writer that I already knew as an advocate; I realized that the audience I want for the book I very much wanted to write does not, yet, exist.

There are still too few arguments for opening organizations up to a neurologically diverse workforce—despite the law, despite the social movement, despite the justice and advantages.  It’s not that companies are struggling with the how; it’s that they don’t really understand the why. 

Simply put, I realized I needed to write the equivalent of a prequel, then invest my time and energies on a follow-up how-to book.  Advocacy first, practical how-to second.

Now, with this decision in place, my reluctance is replaced with energy and drive.  But, it’s also rather sad.  It’s sad that the advocacy book is necessary.  It’s sad that we’re still at this point where people need to learn how doing the right thing is in their own best interests.  It’s sad that we’re still so focused on normal that we forget the power of extraordinary.

So, it’s time to start back at the beginning.  It’s time to write the book that needs to be written.  And to hope that, someday, the book I really want to write will need to be written, too.

One thing I find very important in this film is that they stress how essential good teachers are to the education of children, but how the system—including, but not limited to the teachers’ unions and politicians that keep bad teachers in their positions—is dysfunctional.  That focus, that differentiation is very important.

Before writing this, I read quite a few scathing critiques.  Not surprisingly, many if not all of these critiques were written by people who have a vested interest in the status quo.  I would recommend against “buying” their messages as well, for much the same reason.  Facts and opinions are not the same, and yet both sides present their opinions as if they were facts.  This is unethical and it is not done in the best interests of the recipients of these services, namely the children.  Furthermore, over-simplifying and filtering an opponent’s message in order to set up a straw-man—which is what most of the critiques I read did—is unethical and logically fallible.  We’re talking Critical Thinking 101 here, so it’s especially sad that it was done by our teachers and administrators who should know better.  Finally, while these critiques occasionally would admit the problem is real, none of them offered a solution besides pushing forward with what we know doesn’t work.  These people are barriers to change and, for the sake of our children, change is necessary.

That does not mean that the changes proposed in the film are as solid and successful and inclusive as the makers of Waiting for Superman would have us to believe.  The narrator of the film referred to “every child,” meaning that even poor children and children “lost” in the worst neighborhoods should have access to a top-quality education.  And that’s fine.  I’m on-board with that message.  BUT that message does NOT include every child.  This film failed in addressing the needs of every child with the filmmaker’s choice to exclude special education from the discussion and from his documentary.  The discussion of quality education must address the needs of all children!  That not only includes the poor performers, but also children with special educational needs that require educational services other children do not need. 

Granted, that issue is not the point of the documentary.  However, it is my opinion that it should not be a separate issue.  Successful schools are schools that can meet the needs of all their students.  Changes in education cannot exclude the needs of children with special educational needs, including those who are behind due school failure and those who need special services to succeed in any school setting.  We must acknowledge that “what works” for many children will not and cannot work for ALL children.  There is no single SOLUTION.   This presentation, this complete absence of all things special education, damages the credibility of the entire documentary in my opinion; and yet, reading so many negative critiques of the film that offer no solutions, no alternatives, and no change leaves me feeling that we’re right back where we started.  It was even in the film.  This dialogue is not about the kids.  Instead, it’s about the adults, each with their own bias and their own self-interest and their own ideas.