Showing posts with label the monster. Show all posts
Showing posts with label the monster. Show all posts

January 25, 2016

The Price of Happiness

Today at Support for Special Needs:
Excerpt: 
I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me.

January 18, 2016

The Three Anxieties and the Lucky Brain

Today at Support for Special Needs:
Excerpt: 
Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her brain.

January 4, 2016

Just possible

Today at Support for Special Needs:
Excerpt: 
We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.

December 14, 2015

Small World

Today at Support for Special Needs:
Excerpt: 
When we can't pass and disappear into the world of the typical, the internet communities we build help us to feel as if in this smaller, more self-selecting world we've assembled, we're part of a neighborhood, and when someone is in trouble, it can sometimes seem like that family lives just down the street, and we were informed by a neighbor walking by. It is, as I said, a fiction, but it's one of the more valuable ones we have.

November 9, 2015

Monster Swag

Today at Support for Special Needs:
Excerpt: 
It can be a little frustrating, having to explain polymicrogyria. Other disorders with a great many patients receive a great deal of public awareness, as well they should, but it can feel like the oxygen in the room is very limited as a result. People ask a lot of questions based on their observations of Schuyler. Is she deaf? Does she have autism? Sometimes I go into the whole thing; other times, I just say she has a rare brain malformation and leave it at that. Sometimes I feel like being a teacher. Sometimes I'm just tired.

September 28, 2015

Wonder On Loan

Today at Support for Special Needs:
Excerpt:
Last night, like everyone else lucky enough to have clear skies, we watched the rare display of a supermoon and a full lunar eclipse at the same time. As far as excitement goes, it fell short of, say, a lightsaber duel or an airplane race, and yet she loved it. She theorized that if she became a werewolf, her newly dyed hair would mean that she would be a blonde werewolf. As the moon disappeared and then shifted red, she watched with amazement. This was an unexpected experience, and those aren't always a good thing for kids like Schuyler. But to her, it was another gift from the universe. If I perceive that universe as sometimes cruel and sharp, Schuyler simply recognizes it as a fount of surprise and wonder.

August 10, 2015

The Girl Unseen

This morning, at Support for Special Needs:
Excerpt: 
More than anyone else I know or have ever known, Schuyler possesses grace. It touches us all. The one thing that I can say for certain is that it's nearly impossible to meet Schuyler and to know her without being fundamentally changed. She has limitations, that is very true, and they are almost certainly more challenging than most people truly understand. But the limitations that hold her back the most are ours, I think. Our inability to grasp the world as she understands it, and our failure to make that world a better place for her. But God, how we are all trying. I'll be trying to do that until my very last living breath.

August 4, 2015

A Partnership

This morning at Support for Special Needs:
Excerpt: 
You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.

July 13, 2015

Twelve Years

Today at Support for Special Needs:
Excerpt: 
Schuyler's monster doesn't have a proper birthday. Perhaps it could be said to share Schuyler's. Even that doesn't feel quite right, because it was there from very early on, probably the second trimester or so, a shadow unseen inside her tiny developing mind. She wasn't yet a baby, but her monster was already a monster, only waiting to be brought into this world with the sole purpose in life to bedevil the life of my daughter.

June 29, 2015

Assembling Schuyler's Armor

Today at Support for Special Needs:
Excerpt: 
When things go wrong, when Schuyler meets up with someone who doesn't understand or care, when she hears the words meant to demean her or is simply treated with disregard, I think I've taken that as a larger affront than it probably is. They're not just hurting her feelings or standing in her way. I think on some level, they're tearing down her world. And that's something I simply can't let go unchallenged.

June 9, 2015

Might Have Been

Today at Support for Special Needs:
Excerpt: 
Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest. I don't know if that's a plan for success or if it's going to bite her face off one day. I only know that it works for her, and it gets her through days both simple and complicated. 
And I know that in that regard, I envy my daughter very, very much. As I should. As should we all.

June 1, 2015

Transformation

This week, at Support for Special Needs:
Excerpt: 
Because she knows. Schuyler knows she's different. She senses it every time she verbalizes in public and gets that quizzical look from strangers. She absolutely knows it when she orders at a restaurant, her iPad reading her order aloud through a Bluetooth speaker with a crisp English accent, an accent specifically chosen because why not? Schuyler watches the kids around her grasp concepts that she has to work hard to handle, and she knows that this happens, the difference happens, because her brain isn't like everyone else's. In a world of special snowflakes, Schuyler is another thing altogether, and of this she is entirely conscious.

April 20, 2015

The Little Fish

This week at Support for Special Needs:
Excerpt: 
As parents of kids with disabilities, we step up to the big fights, and while they can be exhausting and definitely take their toll on us, I think in some way we prefer them to the alternative. The struggles that truly tear us down and leave us dispirited are the little ones, the tiny indignities that defy our long-developed skills for the Big Fight. They can't be confronted with a sword, and we're not necessarily adequately armed with flyswatters. We fear our children being eaten by alligators, only to discover that they are more likely to be devoured by little fish, one tiny bite at a time.

February 9, 2015

In Defense of Monsters

Today at Support for Special Needs, with a lot of input from Schuyler:
Excerpt: 
Schuyler doesn't hate monsters. She loves them, because she understands them. Monsters are misunderstood. We think monsters are scary because they're different, and she's learned the hard way that the world doesn't like different. And I've always recognized that Schuyler's view of monsters makes for a perfect metaphor for her disability. I use it because it's brilliant. I don't mind allowing the world to give me credit for this metaphor because I'm selfish that way, but like most of my views on disability and how it affects my daughter and the people around her, Schuyler is my teacher. She has been from the beginning.
Art by Laura Sako

January 19, 2015

Impossible Things

Today at Support for Special Needs:
Excerpt: 
Doctors and teachers and therapists, they can be a great many things, but they're generally not very skilled prognosticators. To be fair, I don't think very many of them actually claim to be able to tell the future, and I imagine most of them don't even want to try. As parents of kids with disabilities, we ask them to. We demand that they try. Our world and that of our children is already far too full of uncertainty. As a result, we ask for information that our kids' caretakers and educators can't possibly possess. So I recognize that we really do sort of have it coming.  
But God help me, I do so love it when they're wrong.

January 12, 2015

No Easy Answers

Today at Support for Special Needs:
Excerpt: 
It's that time of year again, the beginning of the spring semester, when all the least fun parts of Schuyler's public school experience begin to rise up out of the swamp and demand attention. Soon we'll start worrying about the STAAR test, Texas's state-mandated standardized testing. It's the Godzilla monster that stomps through our little Tokyo ever year. We also begin preparations for Schuyler's next IEP meeting, and the future that it portends. (SPOILER: More monsters, pretty much forever.)


November 3, 2014

Making Our Own Ice

I want to discuss something very specific to augmentative alternative communication, so my apologies in advance if this isn't part of your world. I specifically want to address the strange, illogical divide in the professional speech technology world between those who use dedicated speech devices and those who find success with consumer electronics products like Apple's iPad. I'm still surprised to watch these conversations unfold online and see how blithely parent advocates and end users are often condescended to. Frankly, it pisses me off, which is why I'm subjecting you to this post.

Some of the discord comes from representatives of the big speech device makers, companies who are responsible for developing the technologies that AAC users have come to depend on but who have been struggling to sustain their business models now that commercial tablets have democratized the AAC process. It's a huge shift, and one that the industry is still trying to figure out. For a specific subset of ambulatory users, suddenly the potential purchase price for a speech language system has dropped from something in the area of eight thousand dollars (plus service agreements that can run around a thousand dollars a year) to under a grand, depending on the communications app and however many whistles and bells you choose for your tablet. So potentially MUCH under a grand.

This change has meant that where once insurance companies and school administrators held final say in the systems purchased, for some that power has now shifted. Parents and end users themselves are suddenly able to make decisions about the technology that allows them to communicate. This democratization comes with pitfalls. It is up to these parents and users to get good information about the language software that is available, and to find resources to determine what AAC needs they or their kids may have. They don't always have the support personnel in place to assist them in making good decisions. There are a lot of very, very bad AAC apps out there, and clearly someone is buying them.

The problem with the dialogue that is taking place in sectors of the AAC community is that it makes some dubious assumptions. Cheaper is inferior. Using commercial tablets amounts to a "one size fits all" approach. More expensive systems mean more solid support. You get what you pay for. And teachers, parents and end users are simply not qualified to make those choices.

Getting good support for systems running on consumer electronics is a real concern. But honestly, it's no different from the situation faced by many schools and families out there with dedicated devices without any meaningful local support. It's an industry-wide problem, and honestly one that can be exacerbated for users of expensive dedicated devices by the prohibitive cost of maintaining service agreements from year to year, as well as issues like loaner devices for repair downtime.

iPads and other consumer tablets aren't a fit for every user or even most users, and I'm not sure I've ever heard anyone make the case that they are. But for users like Schuyler and thousands more like her, these tablets provide possibilities that go beyond a speech prosthesis. To say that we are in one "camp" or another, and that AAC users are divided between dedicated devices and consumer electronics, is a gross oversimplification, and it's not accurate. Schuyler uses an iPad, and it runs the same language software that she used on her dedicated device, back when it was the appropriate choice for her. She not in a camp; she's a hybrid, and I suspect she's the rule, not the exception.



In a piece she wrote for BridgingApps a few months ago, Schuyler had this to say about using her iPad:
I like to use my iPad Mini because it help me with talking and I can looks things up like the the right stuff for school. It makes me as other people. When I used my old speech device, it looks like something wrong with me.

[...]

It looks I’m like other people.
One day, I am hopeful that Schuyler will make peace with her differences and even celebrate them. It's something that we encourage in her self-identification and always have. But she's an ambulatory fourteen year-old girl with an invisible disability, attending a public school where she desperately wants to fit in. She's not interested in neurodiversity, because she's in a world where difference is problematic. That's not ideal, but it's her Now World. For Schuyler, the iPad provides a way to fit in a little better, and to participate in a world of technology and online social presence. And she does so using the same language system that she learned on her dedicated speech device.

Her situation mirrors a great many AAC users her age. And for Schuyler and her fellow invisibly disabled peers, the iPad has transformed weird looks into curious questions. She has gone from an effective medical prosthesis that almost miraculously gave her language she never had before but also sometimes stigmatized her to a new powerful tool that also functions as a part of a social narrative in which everyday tech is inclusive.

Inclusive. That's important.

No one is suggesting that this technology will work for everyone. But for speech professionals to suggest that consumer tablet technology like the iPad is somehow universally cheap and inferior isn't just incorrect, although let's be very clear on this point. It is WILDLY incorrect. For many users like Schuyler, systems like the iPad have presented a far superior solution. So no, belittling that technology isn't just untrue. It's demeaning. It often represents an attitude that looks backwards, like a turn-of-the-century ice merchant haughtily dismissing newfangled electric ice makers. It attempts to shame users and parents into abandoning their hard-earned new autonomy. "You'll never be capable of supporting and advocating for yourself," the argument suggests. "You need to step back and let the grownups make those choices."

End users and parents and therapists and teachers, they are becoming experts, out of necessity and because they represent the ground troops. They're making their own ice, not just more cheaply but with greater flexibility and efficiency. Professional support entities now need to make some difficult choices about what the future of their industry looks like, and how to create the business models that keep them employed and relevant, and that keep their clients taken care of. These speech professionals are the natural leaders we look to.

But if there's one thing we've learned over the years, it's how to take the reins in hand when necessary. We're mostly okay with that outcome, too.


October 21, 2014

Deflated

Today at Support for Special Needs:
Excerpt: 
Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.

September 8, 2014

The Other Talk

Today at Support for Special Needs:
Excerpt: 
Typical parents fear The Sex Talk. (To be fair, so do we.) Many special needs parents have The Other Talk, too. We don't discuss the topic with others very much, but be assured that we think about it. When we approach the topic with our kids, we do so gently, because in even the most tragic circumstances, Death shouldn't eclipse Life, and the days we get with our kids shouldn't be entirely stained by our anxiety for the days we lose.

August 25, 2014

To the people like her, which is perhaps everyone

Today at Support for Special Needs:
Excerpt: 
When Schuyler looks at the future, she does so with her disability in mind, but not at the front of her thoughts. I envy her that. She's growing up quickly; today is her first day of high school, after all. We're having conversations identical to those happening in other houses around the world, about how it's appropriate for her to be thinking about boys she'd like to date, or girls she'd like to date, for that matter. ("Or both!" she said during our last conversation about dating; she's going to be trouble.) She asks me to teach her how to drive approximately every other day. When she breaks through her social anxiety, she laughs loudly and easily, and flirts without hesitation. Even a few months ago, I had my doubts about how she will navigate high school. She has those doubts, too, but she's working on them. And the thing is, only some of those doubts stem from her disability.