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by Robert Rummel-Hudson

The Things That Matter

May 20, 2013 in Community Wisdom, Featured by Robert Rummel-Hudson

image[1]I take a lot of things for granted.

Looking back on what was undeniably a bad week, there were many elements I wasn’t feeling very good about. I was already feeling low myself, even before Schuyler’s Miracle League baseball situation went entirely off the rails. As is usually the case with youth sports, it happened for reasons that had nothing to do with the players but which ended up screwing things up for all the kids. Schuyler also had a small seizure, not a bad one but the first in many months, as far as we know. And of course, we’re preparing for the bad part of Schuyler’s IEP, the one that got kicked down the road until this week because of pieces that we objected to a few weeks ago. I have every reason to believe we’re going to object to them all over again on Wednesday.

So it wasn’t a great week. And as I said, I take a great many things for granted.

Until I received the email.

It wasn’t from anyone I knew very closely, and it wasn’t loaded with details so there’s no way to know what was missing from the story, what extenuating circumstances make this story different from my daughter’s. But it said enough. He was a little boy a couple of years younger than Schuyler with polymicrogyria, Schuyler’s monster. This boy had a history of small seizures that were identified as absence seizures in the email, but which sounded, judging from the aftereffects, like the partial complex seizures that Schuyler sometimes has, according to her neurologist. The boy had no history of grand mal seizures, not until the day last week when he had his first.

His first, and his last.

It’s easy to get lost in the world in which we live. It’s so easy to forget how quickly things can change. It’s not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child’s brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it’s grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today’s manageable monster may grow fierce and hungry in an instant.

Would we live our lives differently if we thought about those monsters all the time? I don’t know, and I’m not sure I like the sound of that life, the one lived under threat. But I imagine how we might behave if we really considered the impermanence of things, and if we considered the things that matter. Happiness, fulfillment, lives that thunder and shimmer and take our breaths away. And love, the kind that makes us whole.

You have to ask yourself important questions, in the face of the sudden and the monstrous. If you knew it would all end next week, in a quick and awful electrical storm, or because of a tragic and random accident, or in any of the million ways the universe has devised to devour us, what would you do with the ones you loved? How would you live?

And if you can, if it is within your power to do so, you live your life that way.

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by Robert Rummel-Hudson

One Small Light

May 13, 2013 in Featured, Featured Member by Robert Rummel-Hudson

photo[2]There’s someone I want to talk to. There’s someone I want to reach. There’s someone I desperately wish would listen to me.

And it isn’t you. Sorry.

It isn’t you because you are already here, at a site called Support for Special Needs. If you’re here, you get it. You’re almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn’t small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I’m right, that sounds exactly familiar. Or you might say I’m full of crap. But you’re probably never going to say “Oh, that never occurred to me.” Because if you’re in the club, there’s very little that hasn’t occurred to you, often in the middle of the night when the shadows are long on the ceiling and the future grumbles softly under the bed.

I love talking to you, I really do. But sometimes, and often of late, I want to talk to someone else. Someone new, someone unaware.

I want to talk to them, and take them by the lapels and pull them close and ask them “Why? Why can’t you see? Why can’t you change? Love is waiting, if you could just see for yourself.”

Over the weekend, I spoke at an event at a local library. It was advertised as a Literary Tea. Once a year, the library hosts a tea and dessert event. You come, you drink some tea (fancy), you listen to a harpist play (very fancy), and you hear an author speak for twenty minutes or so about their book (maybe fancy, maybe very much not so, as it turns out). It wasn’t a disability related event, not at all. The attendees could have heard someone talk about history, or fashion, or squirrel monkeys. That didn’t matter. Tea, harp and fancy talk.

It was, in other words, a gathering of the people I want to talk to most of all these days.

How did it go? I’m not entirely sure. I sold a few books, so that’s good news. I talked to a few people afterwards who seemed to connect with my points about how we can build authentic relationships with the disabled, and in doing so begin to truly change the world. I saw a lot of blank faces. I saw some irritation from time to time. I didn’t reach everyone. I reached a few, I think.

That’s how it happens, I guess, this idea of a fundamental change in our society in its attitudes towards those with disabilities. You reach others, most don’t hear, but a few do.

I have an essay that I’m shopping around to sites that don’t aim specifically at the disability community. I don’t want to give it to a crowd that will say “Hear hear! That’s exactly right! I’ve been saying that all along!”, or even “I disagree, I live in this world of disability too. You’re entirely wrong, and here’s why.”

I want to reach the crowd who says “I never thought about it like that before. I’m going to give that some consideration.” I’ll even take “Why should I care? I don’t know anyone like that. Someone else will take care of it.”

Because every now and then, someone will care. A light, previously unlit, will flicker on, and society will move one more tiny step towards a world that is fair and accommodating, and which will make room unconditionally, for people like my daughter.

I’ll take those tiny steps. I’ll happily watch those tiny lights come on.

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by Robert Rummel-Hudson

Field of Dreams

April 29, 2013 in Featured by Robert Rummel-Hudson

imageOne of the most satisfying relationships that Schuyler has had over the years has been with the Miracle League. For those of you who don’t know, Miracle League gives over 200,000 kids and young adults with disabilities an opportunity to participate in a variety of sports, primarily baseball but also soccer, basketball, flag football, and even bowling, in leagues designed to accommodate their disabilities while at the same time giving them authentic sporting experiences. There are over 250 Miracle League organizations in the US, Canada, Puerto Rico and even Australia. If you’re looking for a pure good in this world, you couldn’t do much better than Miracle League.

A few weeks ago, Schuyler was asked to participate in a special baseball camp sponsored by the Texas Rangers Baseball Foundation. The Rangers have been huge supporters of Miracle League over the years, including providing crucial support for the construction of the Miracle League field in Arlington. The Foundation partners with Baseball Fantasy Camps, LLC to host a Fantasy Day every spring for Miracle League players.

I can’t tell you how much it means to these kids. Not just the fun and the activities and the attention, but also the fact that they are taken seriously. That’s not a small thing. The kids were broken up into a number of smaller groups and went from station to station, working on various aspects of the game. They were mentored by Texas Rangers Alumni, some from way back, others only recently retired, and it was clear that these former players and coaches were getting as much from the kids as they were giving.

I’m sure I’ll miss someone, but I’d like to thank them individually. The alumni who were present included Larry Hardy, Dave Hostetler, Kevin “Shrek” Mench, Don Stanhouse, Pete O’Brien, Tim Crabtree, Mike Munoz and Ken Suarez. Schuyler’s group was mentored by Kevin Belcher and Mark Brandenburg, whom I used to watch pitch for the Rangers back when I was in college. All these guys gave of their time, and it meant the world to every player and family member there.

It’s so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It’s easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors’ names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn’t right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever.

Unrealistic? Perhaps, but they were probably just as unrealistic when I was thirteen and imagining my name being announced at the old Arlington Stadium. It’s on the backs of those dreams that we grow up and discover the dreams that were meant for us.

For a lot of kids, baseball dreams loan them wings for a while until they find the ones fitted just for them.

(Note: Next time, perhaps we’ll ask them to just put her first name on the back of her jersey; “Rummel-Hudson” hilariously took up most of the back of her shirt, almost encircling her number. But as a friend pointed out, Boston’s Jarrod Saltalamacchia still has her beat by a letter and a half. She’ll have to make baseball history some other way.)

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by Robert Rummel-Hudson

The Future Speaks

April 8, 2013 in Featured by Robert Rummel-Hudson

photo[2]This will be a short one today, sorry. Or you’re welcome, depending on how you feel about my writing.

I’m on my way to the College of Wooster in Ohio. I’m going to be speaking to young people who are getting into the field of speech language therapy, and AAC technology in particular. I’ll also be visiting with the good people at Prentke Romich before my speech. Given some of our past friction, I suppose that could be a little awkward, but the fact remains that PRC is largely responsible for the success Schuyler has had in the past, and she continues to use their language system today, now on her iPad. I look forward to meeting with them and seeing what their future plans look like, because one thing I can say for certain is that Schuyler will be part of that future they’re building.

I always love talking to students who are getting ready to enter the world of speech language therapy. Technology is moving so fast, and these are the ones who are going to make sure it moves in the right direction and into the hands of those who need it. These are the future professionals who will support that technology and nurture those who use it. They are the ones who will convert big ideas and fancy technology into humanity. I can tell you, it is something to behold.

This technology means a lot of things to a lot of people, but the universal power it holds is simple. It means independence. It means autonomy, of expression and self-determination. If there’s one thing I hope I can express to these young people, as well as to the professionals in attendance who are out there doing this work already, it would be my extreme admiration, and my eternal gratitude. I’m sure there are parents out there who are a bigger pain in the ass than I am, but I can’t imagine I’m not a contender for some kind of prize. So it’s important for me to stop and say thank you now and then.

So, you know. Thanks.

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by Robert Rummel-Hudson

What We Need

March 25, 2013 in Featured by Robert Rummel-Hudson

image
The parents of special needs children have a variety of support systems, and a diverse bunch of needs, as different as the disabilities possessed by our kids. In our community, the idea of the “special snowflake” takes on a different, harder meaning. Even among communities of kids with the same diagnoses, the range of clinical manifestations and emotional states is such that commonalities can be hard to identify.

Likewise, the people we have supporting us varies wildly as well. Some have good support teams in their schools or hospitals; others are fortunate enough to have extended family that both understand and care. To try to list the things we all have in common is largely an exercise in frustration, as anyone who has been a part of the disability community for any time, particularly online, can attest.

And yet, there are needs we have that are universal.

We need people in our worlds who understand how complicated our children’s lives can be, and how complicated our feelings about those lives can be as a result. Parents of special needs kids need to be able to work through those emotions without feeling like they are pressed under the slide of a microscope, or sitting on the witness stand before a court of judgment.

We need friends and family who understand that the scale by which they measure their own kids’ accomplishments and progress don’t apply to ours, and perhaps aren’t terribly helpful to their own kids, either. We need people around us whose empathy runs deeply enough that they don’t assume the worst of a parent whose kid seems out of control in a public place, or appears too old or too big to be riding in a stroller. We need people who don’t just understand how the seemingly small things can represent a triumph for our kids, but who genuinely celebrate those triumphs.

We need at least a few friends and family who know and accept that we’re going to screw up, sometimes badly, and who can step in and help make things right, or at least help make our fumbles feel a little less like bitter failures.

There’s a great deal that we all could use from those around us who love our kids and want to be a positive presence in their lives. We don’t always know how to ask for help, nor do we often admit openly when we’re in over our heads. That high water mark is different for us all. Some lucky parents might never get there. Others perpetually exist in a place of quiet desperation, and the people around them never suspect a thing, not until they really pay close attention. Sometimes you have to really be watching for it. Most of us won’t ask for help very often. Very few of us will ask a second time.

As I said, our needs and our own strengths vary wildly from family to family, and even between individual parents. But honestly, there’s one thing we all need, something that we’ll never ask you for, something that we probably don’t even know we need until we get it once in a while.

We need you tell tell us that everything is going to be okay.

And we need you to mean it.

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A Father’s Fear

March 18, 2013 in Featured by Robert Rummel-Hudson

imageI tried to write about another topic today, something more general, and maybe more applicable and helpful for other parents. But I couldn’t stop thinking about something kind of personal and interior, and so I guess I’m going to write about it here, with apologies and also gratitude for your indulgence.

I want to talk about a kind of helplessness.

The big news story all weekend revolved around the guilty verdict handed down to the two Steubenville, Ohio teenaged boys accused of taking advantage of an inebriated young girl at a party and raping her. It’s an especially ugly case, full of testimony of disgusting text messages, cell phone photos and video of the incident, as well as social media used to continue to violate and revictimize the girl after the incident took place. The story isn’t entirely relevant to special needs parenting, not specifically, but at the same time, it very much feels relevant. I challenge you to find a special needs parent who feels otherwise.

It feels relevant because we know the statistics. They’re not hard to find, nor easy to put out of mind.

In 2007, according to data from the National Crime Victimization Survey, about 47,000 persons with disabilities were victims of rape; rates of rape and sexual assault were more than twice those for people without disabilities. And among that population, people with cognitive disabilities had an even higher risk of being violently victimized than those with any other type of disability.

A Canadian study showed remarkable numbers for sexual assault among different categories of disability. 40% of women with disabilities have been assaulted or raped; 54% of boys who are deaf and 50% of deaf girls; 68% of psychiatric outpatients and 81% of psychiatric inpatients. According to one 1995 study, more than 90% of persons with developmental disabilities will experience some form of sexual abuse at some point in their lives. Almost 50% will experience ten or more such incidents.

And almost all of those incidents of abuse will be carried out by people who are familiar with and trusted by the victims.

As a parent, those statistics are sobering. As a father, or at least as this father, these odds fly in the face of every protective impulse I feel, and I feel a lot of them, all the time. When Schuyler was a little girl, protecting her felt, well, not easy exactly, but it felt possible, at least. Now that she’s thirteen, it seems as if the dangers to my daughter lurk in every darkened space, every hallway at her school, but most of all, those dangers hide in her own trusting and gregarious and naive nature. Schuyler understands a great deal, but she trusts very easily and is eager to meet new people, eager to a fault.

As parents, we can’t be there all the time. In the case of an ambulatory and sociable girl like Schuyler, we as her parents have to face the fact that every year, we’ll have even fewer opportunities to protect her. It’s a rude, cruel and predatory world for kids like Schuyler, and it won’t be any less so for her as she becomes a young adult.

This isn’t my finest blog post, I realize. And I recognize that its greatest weakness is that I simply don’t have any answers. I read those statistics and I perhaps selfishly look for the loopholes, the factors that might be missing from her own life that would make her own chances of being victimized and less than others like her. Those loopholes remain elusive.

When I watched coverage of the Steubenville case, all I could think was “That’s someone’s little girl.” There’s a father out there who took care of her and tried to keep the wolves at bay, and in the end he just couldn’t. I don’t want to feel kinship with that father. I desperately want not to. But I do.

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by Robert Rummel-Hudson

The Quiet Times

March 11, 2013 in Featured by Robert Rummel-Hudson

image[1]
I feel like I should knock on some wood or sacrifice a chicken even for saying this out loud, but Schuyler hasn’t had a seizure (to our knowledge) in about six months.

We celebrate the quiet times, knowing that they can be fleeting.

For kids with polymicrogyria, seizures represent probably the worst of the many things that can go wrong. Schuyler’s condition affects her speech and her cognitive development the most apparently, but like anyone with a neurological condition like hers, it’s the possibility of seizures that hold the most potential for surprises.

For kids like Schuyler, surprises are almost never the fun kind.

Schuyler is monitored periodically by a neurologist, and he remains extremely optimistic about her future. The seizures he identified as being what she is most likely having, complex partial seizures, are similar to the absence seizures she seemed to be having a few years before. During these seizures, she fades, subtly, in such a way that you could be watching her and very well might not be aware that there’s anything happening. In Schuyler’s case, the seizure is followed by a period of disorientation; bad ones can put her off for several hours.

Schuyler’s neurologist believes that her seizures may have reached their pinnacle last year, as she transitioned into the hormonal nightmare of puberty. He convinced us to step back, to let go of some of our worry, and to let things take their course. Her last EEG didn’t catch a seizure, but he wasn’t surprised. Unless they occur during sleep (which they don’t for her, although there’s unexplained but apparently harmless electrical activity taking place every night), complex partial seizures can be very difficult to catch with an EEG. Fortunately for Schuyler, her neuro has no desire to hook her up to the wires again unless she shows signs of more serious seizures like grand mal.

His advice to us has been more therapeutic than medical. “Let her be herself,” he says. For us, the idea of Schuyler one day having a big seizure is oppressive. If we let it, that fear could drive every choice we make, every minute of every day for her. For her doctor, it’s just another possibility, one that will be dealt with if it comes. Let her be herself. Let her live like a little girl with friends and independence and the beginnings of a life, and it’s good advice, even if it can be very difficult to take.

It’s easier to do that during the quiet times. It’s easier to allow the worry to subside a little, or at least to let it step aside so the ones about Schuyler’s socialization and school and The Future can have some stage time. The one concept that remains the most difficult to make peace with is the idea that bad stuff can still happen, and that it will happen regardless of our anxiety. The anxiety doesn’t help, even though it kind of feels as if it does sometimes. The anxiety stands in Schuyler’s way if we let it.

The storms are either coming, or they’re not. We’ve had to learn to live our lives as if they might never come again, even as we stand vigilant in case they do. As parents, I have to confess, that’s surprisingly difficult to do. As is usually the case, Schuyler shows us how.

————

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by Robert Rummel-Hudson

Traveling Companion

March 4, 2013 in Featured by Robert Rummel-Hudson

imageI don’t mind traveling. I rather enjoy it, actually. But most of the joy I get from leaving home and venturing out comes when Schuyler is my traveling companion.

Last week, we had another chance to hit the road together. The occasion was the 43rd Annual Mid-South Conference on Communicative Disorders in Memphis, Tennessee. I was delivering the keynote address at the closing luncheon, and Schuyler was there because none of what I say means much of importance without her, and every bit of it makes sense when she’s there.

Schuyler excels at these conferences. She is rarely shy, always curious, and no matter how many planes we transfer to or how many hours we spend in sweating transit, she is always fresh as a daisy and ready for the next thing. We’re taking another trip next week, this one personal, and she’s already pumped and ready to go. Schuyler is an adventurer, in the truest, most Shackletonesque way. Her taste for the new is never satisfied. Routine is perhaps her most frustrating foe. Where most kids, particularly those with disabilities, may find a comfortable groove, Schuyler finds only ruts.

She makes friends, usually young student attendees or volunteers. This conference was student-run, so her options were almost endless. She gravitated to a handful, however, including one volunteer who revealed that she, too, has a chinchilla as we rode to the hotel from the airport. That was it. Cue the many, many photos of Schuyler’s chinchillas. (And maybe a restraining order by the end of the conference.) Schuyler makes friends effortlessly and holds them close, and she wins them over. I can watch her do it a hundred times at a hundred conferences, and to me, someone who can be painfully shy at the most inopportune times, it looks very much like a miracle.

I see how Schuyler is at these conferences, and I get a glimpse of what her life might be like one day. I see in Schuyler a natural advocate, and one possible face of disability for the world. I know it’s frowned upon by many to use the word “inspiration” when it comes to those with disabilities, but that’s just what Schuyler can be. It’s not so much in a “gosh, what a plucky little trouper” kind of way so much as “all of this just might have a happy ending one day”. Parents of kids like Schuyler see a possible outcome, and maybe they’re not quite so afraid.

I see Schuyler at work, and my own fears are eased, if only for a short time.

As I was delivering my speech, I could see, out of the corner of my eye, that Schuyler was working on something on her iPad. I didn’t think much of it; I won’t pretend that she pays attention to the entirety of a forty-five minute speech, even if it’s mostly about her. But when I was done and was leaving the stage, Schuyler handed her iPad to me. She’d written a message for the audience. She was thinking of giving it herself, but chickened out at the last minute. Schuyler wanted me to read it to them instead.

“Hello everyone. My name is Schuyler and I am here for my dad’s speech today and I can’t let my dad down. Thank you.”

As if she ever could.

————

Thank you 150x150_adMabelsLabelsto Mabel’s Labels for their sponsorship!
Be sure to connect with them…

Mabel’s Labels site,

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Did you know that Mabel’s Labels can help you fundraise? Check it out here!

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Autonomy is a Kind of Monster, Too

February 25, 2013 in Featured, Future Glimpse by Robert Rummel-Hudson

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On Friday, after having lunch with Schuyler, we stopped by, upon request, to see her special ed director. Nothing was amiss. Someone had made off with the director’s copy of my book, so she wanted the three of us to come by and autograph another copy for her. After Schuyler sprang off to class, we stayed and talked for a bit. Before we left, we scheduled Schuyler’s next IEP meeting, and we were given some surveys to fill out before then.

Surveys for us, and surveys for Schuyler.

Simple surveys, nothing dramatic. And yet, in reading through them, we both felt an uneasy fear creep into the room, a fear that had certainly visited us before. Indeed, I’m not sure it ever really left. At best it might have stepped outside for a smoke now and then before coming back in and settling on the couch for the long haul.

These surveys addressed that most enigmatic of all of Schuyler’s monsters.

The Future.

Do you plan on the student living with you after graduation? If yes, do you need information on Agency Supports and/or Medicaid, information on how to obtain Guardianship, information on Assisted Living Facilities?

What is your vision for the student after high school (ie. go to college, trade school, rehabilitative services, etc.)?

Schuyler is thirteen years old, which means that these questions would seem wildly premature for a neurotypical kid. Well, comparing aspects of Schuyler’s life to those of a typical girl her age is an exercise that usually does no one much good. Schuyler isn’t neurotypical. She’s isn’t like other thirteen year olds. She’s not all that much like other kids with neurological disabilities, either, really. She’s far behind in some ways, innocent to the point of naiveté, but also wise beyond her years in a lot of areas that matter a very great deal. In a sense, the question of The Future is one that has occupied us for the better part of a decade now. The only difference now is that we’re doing so in an official capacity.

There are pieces of that future that are becoming clear. Yeah, she will live with us after graduation. Will she catch up in school enough that college would be an option? I want the answer to that to be yes, I want to tell you that she’s delayed, not developmentally disabled, but of course I can’t. She might catch up, she might clear away some of the fog. I personally believe that she will, but it’s not an objective belief. It’s a father’s belief, and I acknowledge that it may be overbelief. If so, I embrace it fully, without qualification. I think she’ll be ready for the world one day, and on her own terms.

But not as soon as her peers. And maybe never in the way that they will be. Schuyler’s differences are significant. Her life will be similarly different, and I anticipate it will require her to do so from our home, at least initially. Until she finds her own Island of Misfit Toys, she will always have a home with us. Her chinchillas will be here, so I suspect she’ll be okay with that for a while.

And yeah, I suppose if it comes down to it, her future may very well include us retaining legal guardianship. I’m not ready to state that unequivocally now, five years before she turns eighteen. The thought of assuming legal guardianship of Schuyler after she turns eighteen feels like we’re stealing something from her, taking away something that we’ve all wished for so desperately, the very independence we’ve worked for so hard.

But the thought of NOT doing so? Terrifying. And more to the point, it feels like the worst possible dereliction of duty possible. We know in our hearts how unlikely she is to be ready by the time she turns eighteen. Admitting that feels like a kind of betrayal, but nothing like the alternative would. When Schuyler turns eighteen, the three of us are going to have to make a very hard choice, and none of the possibilities feel exactly right.

Guardianship seems a likely outcome, and just saying that out loud brings a black sadness that I can’t bury. I leave that sadness sitting conspicuously in the corner, untouched for now. We’ll face it one day. We don’t need to just yet.

There are questions on this survey for Schuyler, too. Five or six pages, actually.

I am interested in a career in the field of… (Followed by a daunting list of choices.)

Place a check by the traits that you feel are your strengths. (Also followed by many, many choices.)

After high school, who do you plan to live with?

Well. I’ll be curious to see her answers. “What do you want to be when you grow up?” is a pretty loaded question for kids with developmental disabilities. Judging from her early reactions to this line of discussion, the fact that those choices will be all hers is a daunting thought for Schuyler.

I’d be lying if I didn’t confess that the thought of handing over The Future to her is pretty terrifying to me, too. You can’t be surprised by that admission.

————

150x150_adMabelsLabelsThank you to Mabel’s Labels for their sponsorship this month! Be sure to connect with them…

Mabel’s Labels site,

Twitter, Facebook, andtheir blog! Subscribe to their newsletter here. 

Did you know that Mabel’s Labels can help you fundraise? Check it out here!

What are Preschool Shoe Labels? Help your toddlers learn left from right AND label their shoes with their names!

 

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by Robert Rummel-Hudson

Alone on a Crowded Sea

February 18, 2013 in Community Wisdom, Featured by Robert Rummel-Hudson

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I can remember the first time the Internet became part of my life as a special needs parent.

The afternoon that Schuyler was finally diagnosed with polymicrogyria, her neurologist warned us. “I know when you get home, the first thing you’re going to do is go online and look this up,” she said. “I just want you to be ready. It’s going to be pretty rough.” She wasn’t kidding. At that time, the only information online was very clinical. Most of it was written in that horrible medical moon-man language, but the parts that were comprehensible were very scary boo. Worst case scenarios, mostly.

If Schuyler had been diagnosed a few years later, I might have found the world to be a little more comforting, and informative. I would have found at least one support group LISTSERV, and a few years after that, I would have found groups for polymicrogyria families and groups for apraxia and other related neurological disorders on Facebook. Most of all, I would have discovered other parents sharing their experiences.

I would have found what would feel very much like community.

I can also remember, all too vividly, when I discovered how fragile that sense of community can be, and how quickly it could devolve into factionalism and tribalism. I learned how extreme the disability community can be, and how eager it can be to devour its own. How it’s often much less a community and much more a collection of interests, self-protective and nearsighted.

It’s a lesson that many of us discover, whether we are parents or family or persons with disabilities. We find that the idea of community means very different things to different people, and that it is much easier to insist on our positions and to shout down those with other perspectives, ones that we don’t share and therefore don’t value.

I remember when I learned that the disability community can be so insular, so walled off, so protective of its spot on a perceived high ground that it’s honestly not much of a community at all.

I’ve been watching that community eat itself again recently, although honestly, it’s never hard to find a fight. In the past year, I’ve retreated from that larger community, and have stayed away from the parts that don’t concern me or my daughter. If it were just me, that would be fine, I’d write it off as a product of my own bad personality or whatever. But when I talk to the friends I’ve made in that community, I find the same observation, the same retreat. And among both parents and persons with disabilities, I’ve found something very much like a commonality, small but real.

When enough people feel that they are alone again, alone in the midst of a large and diverse community that is hell bent on self-immolation, then I’m not sure that “community” is still the correct term to use.

But here’s the thing that has happened, for myself and others, and if I were advising parents who are new to this whole world, it’s the thing I would advise them to concentrate on. Even as I’ve discovered how isolating the larger disability community can be, I’ve found that the individual friends I’ve made have become stones on which I can build something. We’ve also found real lasting value in those communities that have very real connections to my own family, in our case those built around assistive communication technology and neurological conditions like polymicrogyria and microcephaly.

Mostly I’ve come to realize that the individual advocacy in which I engage on on my daughter’s behalf is the most important work I can set myself to. More than that, it is through that small advocacy that I can build something larger, something better and more lasting.

I once believed that a larger sense of community would benefit us all, that the rising tide raises all the boats, etc. I don’t think I believe that anymore, not entirely. The Internet makes it feel like there are a lot of us in the same boat, but perhaps it’s more like there are a great many little boats bobbing around in the same dark sea. And perhaps that’s the best we can hope for. Tend your little boat, and find the friends with whom you can tie onto for a time and help each other.

And remember that we really aren’t alone. Not entirely, and not in the ways that matter.

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