Sometimes it sort of sneaks up on us.
Schuyler came home from school without her speech device today, which as you can imagine is a pretty big deal. We were stern with her, in that way that is probably a necessary part of the parenting process but which makes me a little queasy, and we found ourselves back at her school at seven o'clock at night. A janitor let us in, and Schuyler took us to her mainstream classroom. And there it was, the Big Box of Words, along with her lunchbox and a few other items that should have come home with her.
We led her miserably back to the car, lecturing her sternly the whole way. When we got to the car, we talked to her about the importance of having her device with her at all times, both because of her communication needs and the fact that, yeah, she's a nine year-old kid walking around with a $7500 piece of electronic equipment.
Throughout the questions and the admonishments, Schuyler sat quietly, her face downcast and sad. I can't look at her face when I talk to her in those moments, because I'll fold like a house of cards if I see those eyes.
It occurred to Julie that if Schuyler was leaving her device in her last classroom, she must not be using it in her after school program. That's not incredibly surprising since they mostly play and run around, in a rough and tumble environment that doesn't lend itself to using the BBoW. But in addition to any emergency communication needs, Schuyler also does her homework after school, so she needed to have the device nearby and accessible.
"Do you ever even use your device after school?" Julie asked her.
"No," Schuyler answered sadly.
"No? Why not?"
Schuyler hesitated, then started punching buttons on the device. When she was done, she looked up at us, with an expression of sadness and maybe even defeat, a look I very rarely see in her eyes. Rarely, but occasionally. When I see it, I take notice. She touched the speech button.
"They don't know I can't talk."
Yeah, sometimes it sneaks up on us.
I just started to cry, out of nowhere. Julie held it together a little longer, but not long. "She knows," Julie said. "She really understands, doesn't she?"
There was nothing left to say after that. I gave Schuyler a hug, a long one, and we drove in silence to the Purple Cow, her favorite restaurant.
Later, I asked Schuyler who she was talking about. "Who doesn't know you can't talk?"
She signed "friends".
And so it turns out that a father's heart can break twice in one night.
Oh the sweet, sweet girl. I think she's amazing.
ReplyDeleteOh, bless your heart. You know, the first thing that popped in my mind was "they know, they just don't care". How do you explain that to a seven year old and maybe I am giving them way too much credit.
ReplyDeleteoh, no. oh, wow.
ReplyDeleteWorking in special education law, I didn't think there was much that could bring me to tears at this point. Proves me wrong, I guess.
ReplyDeleteI don't have any sage advice or comforting platitudes other that to say that you are all so strong.
Wow. That so hurts my heart. Not sure if it's the mom in me or the asthmatic little girl that always felt a little different from the other kids. But that story makes me want to give Schuyler and her parents a big hug.
ReplyDeleteOuch. Reality is such a harsh thing to face, whether you're a grown up trying to parent, or a kid trying to be normal. I'm sorry.
ReplyDelete((((((hugs)))))) to all of y'all.
ReplyDeleteThat is, in a word, amazing. It is heart warming and heart breaking to see how she is struggling to fit in, and apparently succeeding.
ReplyDeleteI'm so, so sorry. There's really no words to respond to that one.
ReplyDeleteJust heart-breaking, even in cyber-space, thousands of miles away.
ReplyDeleteWow.
ReplyDeleteThat's heartbreaking. So many hard realities on both sides of growing up with a disability. It's really lucky that you're able to see, understand, and try your best to work things through with her, even if it won't always help. Lots of kids don't have that.
ReplyDeleteIt's like her friends don't care, or maybe, they truly don't know. Does she sign with them? Other then that, all I have to say is... Children understand way more then adults give them credit for, why is it so hard for some people to understand...
ReplyDeleteOur dear friend Cole, who was featured on TLC's My Life as a Child has one of the most memorable quotes I can think of, has his mom interviewed him on their floor... He was 8yo at the time... "I'm sad, because I always need help... I don't want you to be a salve to me..." to his mother, he says... At 8, even he undertone his CP affects people around him!
If any one can some how find a copy of My Life as a Child Ep1 'Hopes and Hurdles', it's very much worth a watch... Other episodes profile different kids in different situations.
Oh, that gets me.
ReplyDeleteI wish there was something to say that sounded *right* but there's not. Sigh.
ReplyDeleteI'll surely be thinking of you, Julie and Schuyler for the remainder of the day.
Oof. That hurt to read; I can't even imagine how it felt to live. I dread the day when my son clearly understands that he is different; not because of the differences but because of how he may feel about it.
ReplyDeleteI second the "They know, it just isn't an issue."
ReplyDeleteOh, Schuyler, millions of people you don't know ache for you, and love you. You are amazing.
Wow. Thanks for sharing.
ReplyDeleteI fully understand why your heart broke, Rob, because my heart broke for Schuyler, too. What rough waters you must be entering, as your beautiful, amazing little girl transforms into a beautiful, awkward, self-conscious adolescent. I wish y'all only the best.
ReplyDeleteThis really hit me where it counts. Thanks.
ReplyDeleteWow. I'm speechless... I've read your book and I've never been so heartbroken.
ReplyDeleteLaura
I cried.
ReplyDeleteI should have mentioned this to you when I saw you... but for all the time I've been reading about your awesome kiddo (her entire life, eek!), there were aspects of your and Julie's struggle I never really "got" until I had my own.
You guys rock.
And that made me cry, too. So sorry, Schuyler and Rob and Julie.
ReplyDeleteSeconding this: "I don't have any sage advice or comforting platitudes other than to say that you are all so strong."
Shit. Where do you go from there?
ReplyDeleteWas any child ever more universally loved than yours? I do not know. Much love to you all. Many hugs. Many wishes for...everything. Anything.
ReplyDeleteRob, could you please give a message to Schuyler?
ReplyDeleteSchuyler, many years ago I went on a cub scout camping trip with my son. He's a teenager now but back then he was only a few years older than you are now. He was not very popular so going on this trip with some of the cool kids was a very big deal. He wanted them to like him. On the trip, he found out a lot of things that really surprised him. One of the cool kids who was older and bigger and better at sports was afraid to have his mom leave him for even a few minutes. It turned out that she worked at his school because he couldn't even go to school alone unless he knew she was there. Another boy had to wear diapers at night even though he was years older than you are now. He was on the basketball team and the football team and even had a girlfriend, but he still wet the bed at night. It turned out that almost every boy there had something he didn't want his friends to know about him. And my son didn't feel worse when he found out that these boys he respected had problems. He felt better, because it made them seem like regular kids that he could be friends with, not super-kids who were too cool to be his friend. I think all of us feel shy about the ways we are different. Even grownups. Your problems are harder than a lot of other kid's problems. But maybe your friends don't need you to be perfect. Maybe they just need you to be you.
I'm not sure which hit me in the heart more, the post, Rob, or the comment from Anonymous about his son and the boy scouts.
ReplyDeleteThank you for sharing, both. Even though my son is (a term you have often used) Neurotypical, I still look to you and Julie as a guide for how to raise a good kid.
Neurotypical or not, Schuyler is an awesome little girl with awesome little girl problems and you both are doing the best you can in raising one hell of a fine girl. I hope I can be as lucky as you both in raising mine.
I am so, so sorry that she feels that way. But I also think that maybe her friends just don't care.
ReplyDeleteMy previous comment was badly written, and that has been on my mind all day. I'm far from the wordsmith you are. I loved the book and learning about your wonderful family. Schuyler is such a brave little thing, and you are such great parents. But, in my comment, I inadvertently implied that I was heartbroken by the book. On the contrary, I was enlightened, amazed, and inspired by the book. What happened was heartbreaking-I can't imagine how you and Julie must feel when it's so powerful to your readers who don't even know Schuyler. The title of the post couldn't have been more aptly put.
ReplyDeleteLaura
Ouch :(
ReplyDeleteI can't stop thinking about this - and I don't know how to articulate it but I'm going to try: I think it's kind of wonderful that Schuyler is hanging out with these kids and just being Schuyler and that they're accepting her. They're either not noticing or not caring that she can't talk like they do. She called them "friends"- and you didn't indicate that they were making fun of her.
ReplyDeleteMaybe I've got it all wrong, and if I do - I'm sorry.
You know, Schuyler has a funny treasure regarding not verbal talking, but talking - speaking truly. She has a dad who really cares to speak and who does speak, and speaks so well that we hardly know he was speaking/writing until his story made us cry. She has a family who cares so much about the power of words and who cares to make the function of speech and expression as available as it can be.
ReplyDeleteI know, that's no substitute for being able to talk with your mouth.
That brought me to tears too.
ReplyDeleteShe is so wise beyond her years.
Oh wow. Hugs for her and hugs for you and Julie.
ReplyDeleteOh, how that made my heart ache for her as well. Parenting is not for wimps that is for sure.
ReplyDeletethey just rip your heart out, don't they....
ReplyDeleteOh Schuyler. Really kid. No one can make me teary like your daddy, which really means, no one can make me teary like you.
ReplyDeleteMy heart breaks that she wants to hide her BBOW, hide her voice...but then there's a part of the teacher in me who smiles...that she can play and run and laugh with her friends and they don't care/mind/notice that she can't speak. They are smitten with that magical girl of yours.
(I guess the 2nd part of that is true only if they aren't bullying or bossing Schuyler around. I can't tell from your post and you don't need to answer...I want to find a small silver lining though.)
Give Schuyler an extra hug tomorrow from me.
I was thinking he same thing as another commenter here- they know but they just don't care. Fitting in is so hard, I'm glad she has friends who like her just for her.
ReplyDeleteOh. Just...ouch.
ReplyDeleteIt turns out that more than just a father's heart can break for your daughter...
ReplyDeleteI have nothing I can say that will make it any easier for her, no words that can comfort her, or you.
On the other side of this coin? She is probably one of the most courageous and strong people I've ever read about, as are you and your wife. And that she has friends, and they don't know, and accept her as she is, without her BBOW? Is amazing in and of itself, and shows how awesome she is.
You're doing a wonderful job against amazing odds. Both of you.
Aw $hit, that sucks. I am not looking forward to that day either.
ReplyDeleteThis stuff is just not fair.
I thought I saw a moment of that in the mall video, around the "i don't know" mark; a look of discouragement or weariness or something that I associated with the frustration of communicating. Her eyes went a bit sad and faraway for a moment, anyway.
ReplyDeleteSimilar incident the other day. My 9 year old read her "oral" report to her dad over the phone. Once at school, her aide asked if he learned anything. My daughter just said, "No, He didn't understand anything I said." Yup, it made me sad, when usually I don't feel that way about her speech. She is improving so much with her Eco, but still isn't able to do the one thing I want her to do with it the most. Be understood!
ReplyDeleteOh my gosh, how about Ambush Your Readers? (Which is fine, by the way). You commented once on my blog about making you think first thing in the morning...well, you've just made me cry in the middle of the afternoon.
ReplyDeleteIn contrast to the hilarity and general nastiness in the post about the cut-off finger episode, this post is tender and reserved. The brevity of description between the lines of conversation (in the last half of the post) shows clearly the heartache you're feeling.
I think we're all feeling a little low knowing this happened, that Schuyler wanted to hide her BBoW, and that she might be sad.
If the kids don't know that she "can't talk", and it isn't getting in the way of her after-school romping, then they must not care...which would mean that they accept her *as is*.
Schuyler's a smart kid. As she gets older, she will learn to use the box to her fullest advantage. She'll use it when it benefits her, and not when it doesn't. (She'll also figure out that she has her daddy wrapped around her little finger, and in addition to that $7,500 BBoW, she'll also have a lovely new designer handbag :)).
Your love for Schuyler comes through always. Together, you are unstoppable.
Wow. When I read this I thought of The Island chapter in your book. In some ways, her after school program is her island. When she plays she's Schuyler, not the girl who can't talk. This post has haunted me all day and reminded me of things I didnt want my friends to know when I was a kid. Just tell her that so many of us think she's amazing, I know my son has been captivated by her for years.
ReplyDeleteAs others have commented, words can't say it -- wish I could give you all a hug.
ReplyDeleteM.R.
Ooof. That's a strike to the heart.
ReplyDeleteWow. My heart goes out to all of you yet again.
ReplyDeleteIt strikes me how we are all at such different places in our journeys. . .different circumstances. . .different seasons. . .and yet we are kindred spirits because we are each shepherds of our beloved broken.
The same day I read your post, we had our LAST IEP meeting with the Plano ISD. Hannah graduates in 3 months! It hit me like a ton of bricks. . .thinking back to the fact that her FIRST IEP meeting was in 1996. . .in the first grade. Thirteen LONG years. . .the longest and most difficult of our life together. It was like one of those "life flashing before your eyes" moments. . all the highs and lows as we were facing all the unknowns and challenges . . .as well as a number of our own "ambush my heart" moments.
Not saying it will be a cake walk from here. . .far from it. . .life after high school will be the next big hurdle. . .but the significance of what Hannah is about to accomplish just settled in around me for most of the day.
When I was telling our 16 year old about it, I commented that I will probably REALLY be boo-hooing at the graduation ceremony. . .she informed me that if that was the case, she was going to sit between daddy and Uncle Pat!! :-)
Side-note: I enjoyed getting to meet and talking a few minutes with Julie at the bookstore a couple weeks ago.
Oh. I just cried too.
ReplyDeleteI know, you think you're dealing with everything OK and every once in a while it's just WHAM.
We had a moment today with two little boys in the neighborhood who didn't really want to interact with Max, even though he was so excited to see them and their Razor scooters, and it got to me. SO, what I've decided to do is next time we go out I am showing them Max's communication device, a Dynavox, and asking them if they want to appear in it, if so I'll take their pictures and upload them to the machine.
Maybe Schuyler will want to do the same, at some point, for her friends?
Heartbreaking. Reality sucks, really kicks you in the solar plexus sometimes. Wish she didn't have to experience that.
ReplyDeletewell CRAP this is hard for all of you. I'm so sorry.
ReplyDeleteOne of the hardest moents as a parent I can imagine. I agree with the comments about the kids not caring though. My son turned out to be in a first-grade class that was "combined" with the special-needs class in his grade. Apparently some of the higher-functioning kids would join in some of the mainstream lessons, whereas others did not. Activities such as lunch and recess and storytime were done as one big group. For reasons I don't understand, this was never explained to the parents, which resulted in quite a bit of confusion at birthday party time, when I got a bunch of RSVP's for kids who were not listed as being in his class. Anyway, as I began to figure it out, I asked my son if any of these kids were "different" or had "special needs." He looked at me like it was the weirdest question on earth (it was a weird question) and said "No," with a tone clearly indicating he thought I was off my rocker. After talking to the teacher to clarify things, it turns out that the kids have a variety of issues, some not very obvious, but that 4 of them had full-time aides due to the severity of their disabilities. My son truly did not really notice and to the extent he did, it did not much matter to him. At some point most of us outgrow that and I think it's a shame really. P.S. Thank goodness the place we were having his bday party was able to accomodate the extra kids!
ReplyDeleteWhat a girl you're raising.
ReplyDeleteRob,
ReplyDeleteWhat struck me about this post was the context of the one before it commenting on her ability to be understood. While the posters who described the clear limits on her communication were correct, i wonder if maybe the kids she plays with aren't picking up on what those that marvelled at the unexpected clarity of what she said were also picking up on.
In other words, for the limited communication needed at her age, while running around and playing her "hi's" "uh-huhs", "no's", "over there's" etc... are sufficient for her to be able to "pass" as speaking among a group of kids her age,so long as the main activity is running around and playing.
But I can certainly see why this hit you hard.