December 11, 2012

Hope is the thing with feathers and claws

Schuyler and I had a hard conversation tonight. It was an important one, and I'm not sure I got it wrong, exactly. But it was difficult for certain.

The day began with a parent/teacher conference, with Schuyler's history teacher. She'd shown a big grade point drop on her last report card that concerned us enough to meet with him and talk strategies and such. The meeting went really well, but an interesting and disheartening fact came up during our discussion. In talking about how she uses her iPad in class, he revealed that not only did she never use her AAC apps in class, but he wasn't even aware that they existed.

Schuyler's social anxieties about using assistive technology to communicate are as present as ever. They might just be reaching a critical point, which is so frustrating because she started off so strong and so enthusiastic about using it. Once she got to middle school, she became increasingly self-conscious about using it, and it has been a struggle to get her to do so ever since.

Schuyler doesn't truly believe that others can't understand her verbal speech. Those of us who live with her and love her manage to understand her pretty well, and perhaps it's been a mistake to coast on that comfort level. If her mother and father and godparents and family friends can understand her without her device, then the rest of the world should be able to as well.

But they don't, and as she has used her AAC less and less, her speech has become harder to understand. And the more difficulty the people around her have in understanding her, the more frustrated she gets, until she shuts down. It's a negative cycle that feeds on itself. And it's a cycle that we desperately need to break.

Her history teacher said he would ask her to show him the two apps she alternates between in class, and later I received an email from him. He reported that she seemed happy and excited to show the apps, but also said he wasn't sure if they had sound capabilities. "She wasn't sure, either," he said, which is absolutely untrue. She was pretending not to know, not to understand how these apps work. Apps that she probably comprehends better than I do.

I was frustrated. When she got home from school, I had her immediately sit down and take out her iPad.

"I want to you tell me something on your iPad. I don't care what. Just tell me something."

She typed for a few moments and then had it speak. "Sam Houston is a hero at the San Jacinto."

"That was great," I said. "So why did you act like you don't know how that app works with your teacher?"

Called out, Schuyler made a face that I know all too well. Sadness, mixed with petulance. She hemmed and hawed a little, but I kept pushing her. I could feel that we were both becoming deeply frustrated, but you know how it is when a situation reaches a critical point. Sometimes you're just going to have that conversation.

Finally she said, "I don't want to talk like this." She held up her iPad.

"Schuyler, how else are you going to talk so that people know what you're saying?"

She pointed at her throat angrily. "I want to talk with my voice like everyone else!"

"Well, you can't!"

Silence.

There it was. I just said it.

"I'm sorry, Schuyler. But you just can't. And you know that."

Looking back on it, I don't know if I was blunt or cruel. I felt horrible, even though I don't know if I was actually wrong to say it. Her expression was one of hurt, and for a minute or two I thought she was going to cry. But she didn't. She sat back on the couch with an expression like that of a boxer who just can't fight another round.

"I know, Daddy," she said quietly.

And she does know. She knows better than anyone. But in her extreme innocence that another might call naiveté, Schuyler clings to hope. She doesn't understand genetics or neuroscience. She can't google her condition and grasp what it means to have a congenital condition that will never change, or a brain that will never heal because her monster lives inside its very architecture.

To Schuyler there's always hope that one day, she'll wake up with a clear voice and a strong, unfogged mind, and all of this will be a bad memory. Schuyler will wake up just like all the girls in her classes, girls who are pretty like she is but so alien in their constant chatter and their ever-fluid interactions. Even the kids who are nice to her leave her behind to a certain degree. They don't tease her. Her teachers say that she is mostly beloved by her classmates. But she's tired of being a cherished pet. She doesn't want her difference to be accepted. She wants it to go the fuck away, forever.

Hope is sometimes all we have. Emily Dickinson describes it as the thing with feathers, perched in the soul and singing a wordless tune without fail. That may be true. It may also be the problem. Hope has given Schuyler a perfect dream, but in the absence of that dream's unlikely transformation to reality, she's left with an expectation that will probably never be met, and she's blind to the alternatives. Schuyler can't talk, not well enough to navigate the world, but she has tools at her disposal to find another path. Her hope might just be spoiling her chance to find her way out of the dark, into a light that is very different from the one that shines on the rest of us, but a light nonetheless.

I felt like kind of a horrible father tonight, like I was smothering hope. But I'm not sure that hope didn't have it coming, maybe just a little. In the further conversations we had later, Schuyler talked about her AAC apps and how they were her way to talk as best as she could. She hadn't arrived, and she may very well push it all away again tomorrow. But it's clear that whether or not she's ready to accept some hard truths, she is at the very least processing them.

Schuyler doesn't let go of her hopes very easily, and that is an almost entirely wonderful thing. Against all my instincts and all my own unreasonable hopes and dreams, however, I need her to find her way out of this particular hole that her hope has dug for her.

The last thing we did before Schuyler went to bed tonight was to try on her clothes for her band concert tomorrow evening. Crisp white shirt, pretty black twirly skirt, the works. Tomorrow she'll position herself beside a bass drum, and she'll communicate exactly what she wants to the world. The weird, wonderful little girl with the big drum and the fierce hope.

It's a moment where she won't need words. I only wish there were more of them in her world, and in her future.

21 comments:

Ariel said...

Lovely and heartbreaking.

Ariel said...

Heartbreaking and lovely, in equal parts. Hugs.

Becca said...

Being a parent sucks sometimes, and you just got a double dose. But I think it's the right thing to do. I'm sorry it has to be so hard.

Kasy Allen said...
This comment has been removed by the author.
Kasy Allen said...

I know it's hard, for you as a parent, and for Schuyler.

She's stuck in a world that is so fast, and to ask for patience is, often times, too much to ask for.

I wish I could lend you advice on the things that have worked for us, but we go through the same struggles... the iPad is more of a showoff toy in the classroom than it is a tool.

I could only imagine what it's like to be stuck in a place where the people you love understand you, but the people you meet in public only understand you when you use a device or write on paper - the frustration has got to be immense.

Prayers for Schuyler.

Becky said...

I wish I had something more constructive to say, but damn that is one bastard of a double-edged sword.

Hugs to you all.

BigRed said...

Great post, I always get the most out of posts that give us a glimpse into how Schuyler copes as she grows. I was really struck by "She can't google her condition and grasp what it means to have a congenital condition that will never change, or a brain that will never heal because her monster lives inside its very architecture."

The "monster/glitch" metaphor seems to have served her understanding well thus far, but I'm curious: Have you actually ever sat her down with a simple diagram of brain structure, and pointed out the basics of how her structure is different? Perhaps shown her the old MRI? It doesn't sound like it's beyond her at this point to explain the basics (even breaking down the meaning of polymicrogyria for her)and most importantly in my view, explaining HOW her brain got that way (genes are passed onto kids from moms and dads and trigger proteins that "talk" to our body and tell it to develop certain ways. Mom and dad each happened to have a gene that didn't talk right to the cells that made the brain, so yours came out with a different structure). It's oversimplified, but it demystifies it and most importantly, takes any onus off her for her condition...it's too common to see kids blame themselves for their conditions, as though they did something to deserve it (not that she seems to think that, but it potentially heads it off).

Not too mention it's just medically-sound advice to educate her on the nature of her disorder as soon as possible. the more she knows about it the more she can advocate for herself in the future...which is why I want to reassure you that I don't think you did anything "blunt" or limiting with what you said. As you said, it's important to be realistic. The more she understands her own nature the more she can set realistic and adaptive goals for herself.

On a personal note, my mother grew up with epilepsy and a related learning disability...this was in the 60s so it was certainly not the age of information we have now, but I have ALWAYS been frustrated that no one ever explained the details of her disorder to her. She didn't know the name of the types of seizures she had, she didn't know what likely contributed to them, she didn't know details about her many hospitalizations and medications...why they happened or what they did for her. And it's been very frustrating to watch her as an adult only be able to describe her condition to others in the most rudimentary way. Her disabilities are largely invisible (she "passes") and so when they crop up and cause her trouble people rarely take her seriously. We have had to coach her through many abusive workplace situations because of this. I always thought that much of this could be alleviated if she herself was able to understand the hows and whys of her limitations so she could better educate others and self-advocate.

God that was long.

Unknown said...

One of my students communicates much like your Schulyer. He much prefers his voice, and I'm really the only one in school that reliably understands it. I don't discourage it, but I do encourage him to use his device in addition even when I did understand him (beforee we get to the frustration of communication breakdown) and I both scaffold language with people who don't understand and encourage him to use the other tools in his toolbox (device, signing) when people don't understand his speech. It's a process, but it is also a reality that our preferred communication method may not be the method that is best understood by the world around us, and we have to meet them somewhere in the middle in ordere to communicate effectively.

Catherine said...

The other unsaid part of this is that most people, including middle school kids are not going to have the patience to listen to a device. Spontaneous talk is really the way we communicate and it takes a dedicated listener to cooperate with someone using electronic tools to speak. There is a time lag and by the time a thought is expressed conversations have gone light years away from that point.
But the texting and tweets have are bringing us to a point where short and to the point with lot of short cuts in conversation are being used. That is to Schuyler's advantage and something she might want to learn to take advantage of.

Mike Sawin said...

Rob, I've been reading your writing for a long time. Maybe that gives me a false sense of familiarity, but I'm going to say some personal stuff: you have amazing instincts. Schuyler had a very difficult moment, and you were blunt with her. I have no doubt that you did it with kindness and love -- and she knows it. She knew it in that moment, and she knows it EVERY moment. This is because of all the work, the love, and effort you have put forth all of her life. The times you screwed up were opportunities to improve yourself -- and you took them. You have grown so much, become such a strong advocate and a fierce father ... dude. There is NO WAY you crushed her hope. This is because I read in your words (from a thousand miles away) the hope you have for her. You get up every day and fight, and you taught your beautiful daughter to do the same. She's RIGHT THERE, and even though she gets discouraged and angry and sad ... the reason that young woman has hope is because she sees it in you and Julie. I don't want to overstate this, but the truth is, we are defined by our struggle. It's not the victories or defeats that make us who we are, but the struggle. All of those years ago when you started this journey, you were one kind of man. Through your struggle, and through your continual fight to overcome your own crap you became a better father. And further, your constant fight against the world's crap has helped you become an effective advocate, teacher and protector to a wonderful young woman. There are times, Rob, when it's clear that you wonder how this fight is going. Here's what I think: every time she bangs her drum, or uses her device, or makes a friend, or sheds a tear of empathy for King Kong, she wins a little. Every time she gets a joke, every time she learns a new fact or skill or idea is a victory. Every time she laughs or cries about this world because of a new understanding -- no matter how painful -- Schuyler is gaining ground in her battle. The Buddha says that pain is inevitable, but suffering is optional. I am not there, in your house, when things are difficult or unbearable. When she is inconsolable, or things are tense and tight (like they are in every family). But I know, Rob, that you and Julie and Schuyler have joyous times -- because you tell us about them. You all of have moments of wonder, you all have times of quiet love and peace. Schuyler wouldn't be the young woman she is becoming if it weren't for her parents. I know the shadow of the monster hangs above you, but I also know that you three have found ways to acknowledge that pain and still find life and love. This isn't a "You can DO it, Rob!" message. This is the message: "You ARE doing it, Rob!" You are fighting, you are winning, you are giving Schuyler a reason to hope.

Eric said...

I have only a rudimentary understanding of what my daughter was thinking about and the troubles, imagined and real, that she went through as she entered puberty. It had something to do though, with fairy tales becoming less part of her life, images and conceptions evolving as well as frustrations about how her life is different from other girls because of her completely disabled brother.

Could part of that hope you speak of simply be the process of identity that in your daughters case is especially raw since, while others can often hide how they truly feel, she cannot? Her condition connects so directly to her perception and feelings that inner struggles are more obvious to others. Advice we give our kids, like 'don't pay attention to the negative things others say' is useless; just look at any internet forum and see the adults taking affront.

How can she not see an estrangement looming as social behavior in her classmates solidifies its intricate form? I disagree somewhat with the above poster about information.

I would imagine the last thing she wants is to know even better how she is different from everyone else, especially at that age. Remember the film, "Life is beautiful" where he fabricates a fantastic story to cover the horrible reality? Stuck in my throat like a toothpick.

You know you can't go there, and saying to your daughter, "you just can't" is probably a bit harsh, lacking tact, but then her reality is a bit harsher than most, her brain malformation certainly lacking in tact.

Aimee said...

This post could not have come at a more apropos time in my life--I was recently on Schuyler's end of a conversation somewhat similar to this with my own parents. As hard as it was, and as horrible as I'm sure you feel about it, please know that you did the right thing. In many ways, I wish my parents had known enough to have that conversation with me when I was Schuyler's age. (I was misdiagnosed as a kid, so they just didn't have the information.) It totally set me reeling, and took me several weeks to really process what had been said. I got angry and frustrated, at them and myself. But once I'd sorted it out, I came to the conclusion that I'm hoping Schuyler will--that hope and accepting a limitation or using a support (AAC device, for instance) aren't incompatible. As heartbreaking as it is, Schuyler needed that honesty from you. She needs to know she can depend on you for that.

Elizabeth said...

Such a beautiful post that is resonant for me in innumerable ways, despite the differences between our girls. I always think that hope springs eternal and foolish.

Christine said...

We often walk a very fine line between hope and reality...you never want to lose hope when often it seems like you lose so many other things, when you live with such strong struggles. At the same time you can't place all your chips on 'hope' because the disappointment can be such a huge letdown! I think you handled this situation with plain honesty, and I don't think you could have approached it any better...as hard as it was. Prayers for all of you!

Theresa Truax-Gischler said...

Hi Robert, I have a daughter who is nonverbal with a multiple disability, so on many levels very, very different from your daughter Schuyler. Our daughter communicates better with sign language than with an AAC device. My daughter's SLP/BCBA wrote something several years back when our daughter suddenly stopped using her signs and started a "jargoning jag" which included lots of unintelligible speech sounds with inflection (sounds like they are speaking, but in a foreign language) which might bear repeating here. The SLP/BCBA asked if our daughter had been being reinforced for vocalizing, and if we had not been reinforcing her for using her signs. Indeed, this was the case -- she has severe apraxia and had been having a lot of "pop-outs" (intelligible words and then she literally would be unable to say it again). We were of course all absolutely thrilled and everyone – we parents, her teachers and therapists – had all been excitedly reinforcing these. The SLP/BCBA wrote “If so, I have often seen this. Poor vocalizations contact a lot of reinforcement, the child drops the [communication mode] and uses vocalizations, and no one can understand. What is frustrating is that the [AAC mode] seems to be so easily eliminated from the repertoire in these situations. When someone starts losing the motivation for any communication situation, we go back to the basics. We drop all demands, pair [the communication mode] with reinforcement, and systematically increase the demands when using that mode.” If you know something about pairing with reinforcement, then you know what to do – you contrive situations whereby Schuyler will be highly socially successful when using the iPad AAC apps. You find a way to make using the AAC app cool in the eyes of Schuyler’s peers, so that her social “coin” increases in value. She’s the cool one now BECAUSE she uses an iPad app. Be creative – I know you are. I hope that this helps! Theresa

Laurel said...

Speaking without real first-hand knowledge of the special needs world, only as a parent and as a person, I think you did the right thing. Some of the biggest moments of growth in my own life have come from moments where someone else brought me smack up against a hard cold reality I hadn't wanted to face. Sometimes having someone else speak the truth I sort of know but don't want to admit gives me the push I need to figure out what I'm going to do about that reality.

As a parent I know mow much we want to make our kids' lives easier and I know that Schuyler, more than most, has an unfair share of obstacles in her way. On the other hand, I think you are pushing her to do something that is hard in the present but will make her life easier in the long run.

But you have all my sympathy, too, as this sounds like such a heartbreaking and difficult conversation.

Sharon said...

Hey rob. what a tough situation. Personally, I think what you said was phenomenal.

What I really wanted to mention though, was that my first thought was of deaf kids who also have difficulty expressing their thoughts verbally. Perhaps some research on how they deal with these issues is needed? maybe there are some in your area that schuyler could meet?

Laura said...

People have left some really great comments. I agree and think your instincts were on and you said the right things.

I read this post a few days ago and it has bounced around in my brain a bit. Today I thought that maybe what Schuyler needs more practice with is the working out the problem moments when people can't understand her when she uses her device or not getting the info out fast enough or whatever problem is keeping her from using it at school.
An idea: Maybe you three could try a few full days (per week) that she uses only the device to talk to you at home and out and about. If she has trouble getting across what she needs to say with her device, _that_ is when the work is really happening and you should lean into it and really hold strong to using her device. I'm sure you have times when you do that but on this day it would be steadfast. We all need times in our lives when we don't have to talk/act perfectly and can just relax but I think that Schuyler getting a chance to work the problems with using her device through with her most trusted circle could help to use it in other situations where it's not super easy.
Best to you guys. :)

Hope Anne said...

Thank you . . . our dear daughter is almost 8 and non-verbal as well--no one knows for sure why . . . it's suspected she has a severe case of apraxia but seeing as she has only been part of our family for over a year, and her medical history is largely unknown prior to her arrival in our home . . . who knows. Your book and blog have given us encouragement and hope--and also thanks to you, we found out about the Hip Talk and were able to advocate for that for Katya with the school. She has only been able to try it twice since it came in but we pray and hope that it will provide more communication for her--that it will be a bridge to bigger and better things. Thank you for sharing honestly . . . your book/blog have been what has given me the most support from afar.

Becca said...

You were right. It's hard, but you're right. She can't talk as a means of primary communication with the majority of her world. The only option she has to communicate well with others is AAC. If she chooses not to communicate well then that is her choice, her right - but pretending that there is some other option available does her no favours at all.

Does Schuyler have contact with adult AAC users? Role models? Is it regular and can she initiate it herself (even just Facebook interactions)? I think it might help - really, really help - in this situation.

Karen Huntington said...

My daughter will probably never talk, either. And she is only 5, and beautiful like your daughter. I am writing this in fact on her school-provided iPad. It is not an easy journey. Your words are a great help. I am trying to get up to current time on your posts and am almost there!