“So, this is my life. And I want you to know that I am both happy and sad and I’m still trying to figure out how that could be.” – Stephen Chbosky, The Perks of Being a Wallflower

It happened again last night. I had the dream I’ve been having for almost a decade now, since the summer of 2003, when Schuyler was diagnosed with Congenital Bilateral Perisylvian Syndrome, now known to the world of medicine as Bilateral Perisylvian Polymicrogyria and to the world of Schuyler as her monster.

I dreamed that Schuyler spoke to me, in a voice as clear as the ringing of a bell, a voice I’ve never quite heard like that but which I suspect I’d recognize in an instant just the same.

I’ve had this dream so many times. I couldn’t begin to count them. They began the very night of her diagnosis, after we’d faced a hard reality, the one in which she would almost certainly never speak, or even come close. In that dream, and in the countless ones that followed, she said the same thing. She told me that everything was going to be okay.

Dream Schuyler was right. Things haven’t been easy, but they’re okay.

As Schuyler has grown older and her prognosis has changed, the dreams have changed, too, The dire predictions about her speech turned out to be only partially correct. Schuyler’s words can still be hard to understand, sometimes impossible, and her consonants haven’t actually improved much over the years. But her inflections are perfect, and she gets by with less trouble than you might imagine. As Real Schuyler’s vocalizations have improved over the years, Dream Schuyler has had more to say, and with a voice that I imagine is fairly close to the one she’s been denied but which she herself probably hears clearly in her head when she speaks.

When I awaken from these dreams, my emotions are… complicated.

There’s a lot about raising Schuyler that is complicated. That’s true of any special needs parent/child relationship. It might be one of the few universal truths in an otherwise ridiculously diverse breadth of experience in the disability community. The discussion of what we want for our kids has been one that has grown incredibly contentious over the past year or so, which is a shame. Anything that causes us to fight with each other makes us smaller and less empowered as a community, at least in my opinion, but it’s an important and emotion-filled topic. I wish it could be more nuanced, but I think I understand why it’s not.

The question is itself complicated. I’ve been asked before; perhaps every parent of a different child has been at some point. If you could take Schuyler’s disability away from her, would you do it? You talk about fighting her monster; what if you could actually defeat it? And if you could give her a life that had never been marked by disability, if you could wish her a neurotypical mind all the way back, would you do so?

The cure question. It’s one that starts a lot of fights, and yet it’s not the same question for everyone. It perhaps feels very different to the parent of an autistic child or a kid with Down syndrome than it does to the mother or father of a child with cerebral palsy or microcephaly, with organ failure or severe epilepsy. And even among these groups, you’ll find no agreement. Some parents accept their children’s disability as an integral part of who they are, even if it threatens their lives. Others hope for a cure that will give their children a shot at a typical life, regardless of the danger or the lethality of those children’s disabilities.

There’s no right or wrong answer. No position of greater love than the other. Like everything else in this alternate world of disability, it’s not that simple. It’s not even remotely so.

As for myself, my own answer to that question should be clear by now. I’d do anything to give Schuyler the thing she wants most of all. I’d sacrifice my own health and my own future to calm her monster, to smooth her far-too-wrinkled brain, to ease her seizures and clear her clouded mind, and most of all to untie her tongue. Schuyler dreams of being like any other girl her age, teetering on the brink of her teen years but occupying a spot in it uniquely her own. She’s ambulatory enough to move in that neurotypical world, and she understands it enough to reach for it. But it eludes her, sometimes with a brush of her fingertips against her goals and dreams. Schuyler reaches for it, but she never quite grasps it, and it breaks her little heart.

So no, I’m not personally a believer in acceptance or neurodiversity, but only for Schuyler. I don’t have an opinion on your relationship with your disabled kids, or your own relationship as a disabled person with your neurotypical parents. And I shouldn’t.

Because yes. It’s complicated. It’s more complicated than I know how to process sometimes, just in the face of my one daughter with her broken but beautiful brain. It’s far too complicated for me to think about where anyone else’s situation is concerned.

When Schuyler awoke this morning, she found me sitting alone, quietly. She climbed in my lap and put her head on my shoulder, and we sat that way for a while in the morning’s gathering light. Not sad. Just quiet. She asked me the same thing she does most mornings.

“What did you dream about, Daddy-o?”

“I dreamed about you,” I said. “I dreamed you were talking to me.”

“What was I talking about?” She asked, her hand moving to her throat as she pondered the idea of speaking.

“Nothing bad,” I said. “You were telling me all about chinchillas!” (We’ve been talking about getting a chinchilla for my birthday, and so our conversations have been pretty much All Things Chinchilla lately.) She liked that.

“Do you ever talk in your dreams?” I asked her.

She gave it some thought. “No,” she finally answered.

“You never talk in your dreams?” I asked.

“No, I don’t think so. But I want to talk like everyone else.”

“I know you do, Scout. I do, too.”

“But I’m okay, Daddy-o!” And with that, she was in her happy place again.

Schuyler knows what she can’t do, and she wishes things were otherwise. I don’t think that’s ever not true, not for a few years now. It is complicated, for her as well. If there’s one way that Schuyler is turning out to be exactly like her father, it might just be her innate understanding that our joy and our anxiety walk together. Not as friends, not exactly. But perhaps as family.

Like I said, it’s complicated.

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Visit Build-A-Workshop’s blog, where co-founder Julia Roberts shares her family’s journey with special needs.

I can still remember the first time I heard the term “nomad parenting”. I thought, “Holy crap. That’s us.”

Last week, I discussed how the future can be a scary place for parents of special needs kids. It has teeth and claws, the future monster, largely because it is almost entirely unpredictable. We try to anticipate the bad stuff and find a path to the good, dodge the worst and discover the hidden treasures. Most of all, when we get knocked into the sky, we try very hard to land on our feet, and in exactly the right spot.

We pack our bags and we look for the answers. We’ll never stop looking.

The first time we moved for Schuyler, it was without even a hint that she had a monster of her own. She was born in the mostly forgettable Detroit suburb of Royal Oak, Michigan, and we knew long before she arrived that we didn’t want to raise our child in Detroit. We ended up in New Haven, Connecticut, beginning what we thought would be a long-time New England adventure. By the time Schuyler was diagnosed three years later, we knew it wasn’t going to be our home for long. The much-touted Connecticut schools were surprisingly ill-prepared for a kid like Schuyler, and we had no family on the east coast.

We set our sights on Austin, Texas, a little blue island in a sea of red and a town with a number of schools oriented to children with disabilities, but in the end, it wasn’t a good fit. Schuyler’s school wasn’t ultimately ready to support the assistive technology solutions that we felt were the key to Schuyler’s future, so we ended up in the Dallas suburb of Plano, in a school system that seemed committed, deeply committed, to assistive technology as a part of Schuyler’s curriculum and her future. It felt like we’d finally stopped pursuing the future.

Now, seven years later, we’re taking up the chase again.

It’s not all the school’s fault. This is still a very strong school district, easily one of the best in Texas, and even though we’ve been deeply disappointed in the shift away from encouraging Schuyler’s use of an electronic speech solution, we’ve certainly appreciated their commitment to helping her. But as I explained last week, budget cutbacks and a change in philosophy has left Schuyler suddenly without in-school guidance with her AAC needs. Her teachers don’t understand AAC, they don’t get trained on it, and they don’t appreciate the connection between Schuyler’s expressive language and the ability to express herself clearly. A year or two ago, Schuyler’s spoken language was becoming clear enough to be understood by others, people who had maybe even just met her. Now, we as her parents find ourselves struggling to follow her spoken words, and her exasperation is clear. The one phrase we understand all too clearly is the sad sigh and a dejected “Never mind.” We hear it all too often.

When we talk about schools and whether or not a particular community might or might not work for our kids, there are some basic truths that we’ve learned the hard way. One of those is that the general quality of a school system probably tells you very little about how well it will take care of students with disabilities. Public schools in Connecticut are among the best in the country, after all, and yet in no other place was Schuyler treated quite so much like a disposable item. Austin, as both a city and an educational community, seemed like a natural fit for a kid who is anything but typical. And Plano schools have always been among the most well-funded and highest achieving in the country.

And yet at some level, they all failed Schuyler. They all failed a lot of kids, as do most educational institutions in this country. It’s a horribly depressing fact, but it’s true and every special needs parent reading this probably knows it. The students who succeed within the special education sphere in America do so because of extraordinary individual teachers or tenacious parents or the iron wills of the students themselves. Our schools are by and large failing kids with disabilities, and I actually believe they are doing so almost universally.

And that leaves us wondering what’s next, and where.

We’re done chasing schools, I believe. That’s turned out to be a sucker’s bet. We can move to communities that fit us and be failed by the schools, or we can move to towns where we feel like misfit toys, and still ultimately stumble with the schools. We can continue to raise Schuyler in a place where once she reaches an age where she might expect a certain amount of independence, she would be stranded forever by a pervasive car culture where mass transit is neither present nor particularly wanted. Or we can take her someplace where she might be able to live independently one day, where she could step on buses and trains and get to the places she wants to go. We can take her someplace where she can grow, someplace where she can experience a larger world than the one she’s already outgrowing.

We could take her to Chicago.

There’s more to this choice than hoping against hope for a better educational experience for Schuyler. I’ve accepted by now that we may never find that. If we couldn’t expect that from Plano, where we moved originally because there was an assistive technology team and a specific AAC class in place and foolishly believed this state of affairs would never change, then where can we hope to find it? The perfect school is a Shangri-La. It’s a four-leaf clover, something that can be sought in vain but may rather simply present itself by chance. The perfect educational setting may be as simple as one teacher who gives a damn.

There’s a lot to work out before this can happen, not the least of which is my need to find a job. (This is the place where I shameless beg anyone who may have connections in the Chicago area to please help me. I will happily send you my resume. Seriously. Hire me.) But when we sat down and really discussed this, it felt right. In the end, that’s the discussion that matters, the one that begins with “Are we really discussing moving AGAIN?” and ends with “Well, yes. Yes, I suppose we are.”

Julie and I both have compelling individual and personal reasons for wanting to move to Chicago, some of which have little to do with Schuyler. I guess we’re all three looking there for a chance for redemption. And truth be told, we’ve been nomads before. It is entirely possible that I’m chasing something impossible, something that doesn’t exist anywhere. A true nomad is at home in motion, and if there’s one thing that special needs parents understand, it is unpredictability, and transit.

And doing anything, doing everything, for love.