Has it really been almost two weeks? I apologize for the silence. I've been working on a lot of things and it's kept me busy. "What are you writing these days?" I get asked a lot. Well, I have not one, not two but three speeches to write this summer, including a keynote address for this conference on technology in special education in which I have an hour and a half allocated for whatever I plan to say. An hour and a half. I predict lots of Powerpoint and perhaps a puppet show.
Summer with Schuyler continues to be sort of hit and miss, to be honest, although it's still a vast improvement over previous summers when she was being watched by snotty know-it-all college student interns working for the school district. (I still remember the 19 year-old tool who, when told that Schuyler needed to be encouraged to use her device, disagreed and backed up his position with "I am a psychology major...")
As much as she must love hanging out in the office with her forty year-old father, she's missing her school friends and it's beginning to show. We keep trying to arrange play dates with some of her AAC classmates, but everyone's busy during the summer (what is this word "vacation" of which you speak?) so it's hard to put together. She's got her cousins and a few neurotypical kids that she sees now and then, but I think that as much fun as she has, it still serves as a reminder of her brokenness, and as an eight year-old, she's not as in love with being different as she might have been once.
We've been trying to learn a new word in sign language every day, and she's shown some excitement for that. I think part of her enthusiasm has come from the fact that I've been letting her choose the words, which has led to such useful words for everyday use as "robot" and "bat" (on the day The Dark Knight opened, and no, I didn't take her to see it). Now that she's beginning to enjoy learning new words, we may start trying to sneak some useful ones in from time to time. Not that "robot" isn't a solid daily vocabulary tool.
The Big Box of Words remains her primary form of communication, however, or at least our main focus. One way of firing up her enthusiasm for it has been to add things to it that she and I say when we're teasing each other, which is, well, pretty often. We already added a little rhyme from my childhood that I taught her a while back to say when people eyeball her in public, so her device will now say "Stare stare, booger bear. Take a picture, I don't care." (When she's old enough, perhaps she'll replace it with "What are you looking at, assmonkey?") At lunch yesterday (at a Mexican restaurant, naturally), she asked me to add "Beans, beans, the magical fruit. The more you eat, the more you toot." Clearly, I am a fine, fine influence on my child. Her teachers are going to be so proud.
Speaking of which, last week Schuyler wanted to use her device to call me a "monkey fart" (honestly, I don't know why Julie teaches her these horrible things), and lo and behold, the Big Box of Words did not have the word "fart" programmed into it. You can probably see where this is going.
Twenty minutes later, Schuyler had a new subdirectory on the BBoW listing words associated with, well, bodily functions. Say what you will about the beauty of language and creating an appropriate and enriching environment for a child, but come on. An eight year old who can't say "fart" or "burp" or "booger" is not a complete human.
And honestly, just assigning icons to her new words made it all worthwhile.
Did I mention that I'm the keynote speaker at a professional educators' conference? I did.
ROFLMAO! Well, you know, you're absolutely right; eight year olds DO need to be able to speak in the vernacular. I don't know of a single one who "passes gas" but I know plenty who "cut cheese" or "fart!"
ReplyDeleteYou'll be the highlight of the conference, I can tell! You bring so much humor and reality to things.
*giggles*
ReplyDeleteThat's the most important thing she could be doing with her time, seriously.
You monkey fart, you.
Oh, I wish I could attend the conference and hear you speak. However, I don't think my district would pay for it since we have no children who use assistive technology :)
ReplyDeleteI know your speech will be an eye opener for teachers. Your book made me want to be a better teacher - to all of my children who are "broken" in one way or another. I am guilty of getting lost in TAKS stress and losing some of who I am as a teacher. Your book helped remind me of what is important. I am so glad that you have found a school that is right for Schuyler and your family.
Thank you for reminding me why I became a teacher - to make a difference in a child's life. (as cheesy as it sounds!)
Elizabeth
You WILL be including those new icons as part of the presentation accompanying your keynote speech, right? RIGHT? :-)
ReplyDeleteProposed speech title: "On the Importance of Adding Scatological References to Assistive Technology: Case Study" :)
ReplyDeleteGreat post!
I agree - every kid needs to reference bodily functions. I mean, how fun is it to say Monkey Flatulence?
ReplyDeleteI think you should mention in your speech that you are truly "including" (what a crap name for it) your daughter...youre providing for her the ability to be like all other 8 year olds...what can her teachers not love about that! If they dont find it funny, theyre ass monkeys too.
ReplyDeleteFunny! I have enjoyed your book so much and getting to know Schuyler on the web by reading your blog and viewing videos, pictures, etc. I swear we know her, as we mention her name at least once a day!
ReplyDeleteYesterday I also took my daughter to the mexican restaurant in town, and we sang that song on the way there on the trolley! My now 96 year old grandpa would break out singing this song at the dinner table when I was growing up!
My little niece in Brazil turns 3 today, she is also diagnosed with PMG, no seizures either! I am introducing to them some boardmaker symbols, nobody down there has suggested anything for this special girl. I also sent sign language books so they can start somewhere and I ofcourse included a copy of your book to my family in Brazil!
I think you need to share those icons with us...otherwise we'll just be left to our own imaginations.
ReplyDeleteRight on about the ASHA gig as well. That is a huge gathering to say the least!
ReplyDeleteI went for the first time in Boston this past year and it was pretty wild compared to Closing the Gap, and ATIA, my favorite conferences.
Also, along the lines, you may like this book: http://gb-cs.cs.unc.edu/TarHeelReader/2008/07/03/dont-pick-your-nose/
I have recently finished reading your book and am glad you finally found a place where Schuyler is accepted. I am a speech-language pathologist and Schyler's accomplishments remind me to have high expectations of my students and give them the opportunity to show me what the CAN do.
ReplyDeleteI am curious as to the icon sequence which leads to the bodily functions list...just off the top of my head I can think of a couple of different places I might put them.
I am curious as to the icon sequence which leads to the bodily functions list...just off the top of my head I can think of a couple of different places I might put them.
ReplyDeleteI created another subdirectory alongside all the different body parts areas.
Those rhymes are a necessary part of childhood - of course she needs them (from a mother whose son recently got into trouble for making up songs about "bums" in pre-school- a skill I taught him) One of the teachers told me my son was using "bathroom language" in songs, and I was interested to learn that I'm supposed to discourage him from this.
ReplyDeleteThe book Rules by Cynthia Lord is about a girl with an autistic brother. While waiting for her brother at the speech therapist's office, she becomes friends with Jason, a paraplegic non-verbal boy who communicates with a word board. He is twelve, IIRC, and the word board is all sweet, respectful, nice little words like "cookie" and "bathroom" and "bird." At some point early on, Catherine makes Jason a word that says something like, "WhatEVER." He starts using it all the time and pissing his mother off immensely.
ReplyDeleteIt's a good book, but it's a particularly interesting for someone who reads this blog. It's a middle-grade book (i.e., a novel for grade-school children) and I think the reader is supposed to think that it's just never occurred to the mother to give Jason a more colorful vocabulary. But having followed stories like this one about Schuyler, it's clear that Jason's mother has made a choice not to give him the option of being disrespectful and annoying. And really, that's part of what being a kid is all about. (I await the story where you program the BBoW to sing, "I know a song that gets on everybody's nerves, I know a song that gets on everybody's nerves, I know a song that gets on everybody's nerves and this is how it goes! I know a song...")
How does Julie feel about this latest round of word additions? These are the sorts of things I fear my fiance will someday teach our children. I envision myself chastising him as they share a knowing eye roll in the face of my uncoolness. (Don't get me wrong - the smart ass in me was definitely laughing while reading the post. But the control freak in me was gazing through a window into my future as the less fun parent.)
ReplyDeleteThe conference sounds like a great opportunity - daunting, but great. Who'd have thought that you'd become this big fancy expert just by raising your kid and writing a book about it? :)
How does Julie feel about this latest round of word additions? These are the sorts of things I fear my fiance will someday teach our children.
ReplyDeleteI'm not sure I understand the question, I guess. I taught Schuyler about bodily functions? I think she knew about them already.
I can't imagine Julie cares either way.
Very cool. I am just begining to learn a little about programing, have not figured out how to do too much, but have added a "Let's Pretend!" on the activity row and it opens up to things like: I am a monkey, Captain Hook, dinosaur (I thought of Schuyler when I put this one in!) etc etc etc. My daughter who is 3 will tells us when she burps or farts. I love your idea of putting this in there too!! I understand the need to be "appropriate" but other kids have these words in their vocabulary, and learn when it is okay to use them and when it is not. Our kids should too. There might be a learning curve here for both Andrew and Schuyler, but it is awesome to have the technology to give them the opportunity to do this. Very cool way to get her remotivated in her BBOW!
ReplyDeleteRob, we have also, under the Fireworks/Interjection key, added such cool phrases as GO HOME, SHUT UP, BITE ME, BUTT HEAD, BUTT WIPE, DUH?. It just doesn't have the same meaning, when you have to do the sequence for shut and up, now does it? My 9 year old very often tells her siblings to shut up, and it is well placed sometimes.
ReplyDeleteWe have a bad word page too. I strongly suggest you add darn, crap, geeze, poop, holy cow, and any other explecitive you would allow a neurotypical child to use. Sometimes, you just need one of those words to adequately express yourself!
She is so psyched to have you for a dad. Most people are wound a little too tight to have that type of fun with their kids, neurotypical or not.
ReplyDeleteI thought you would be interested to know that our deaf school here in Cincinnati has a class for students (hearing and deaf) with severe language issues like apraxia and aphasia. My little guy is going there this fall for preschool and he'll be one of the only deaf kids in his class, the others are hearing but have trouble speaking. I think deaf schools are seeing a need to market to new types of students due to a decrease in enrollment, which is due in large part to the high number of deaf children getting cochlear implants.
Sorry to ramble ;-)
My extreme sleep deprivation is on full display, I left the same comment on your previous post. I'm really just tired, not someone trying to really really make a point.
ReplyDeleteWell I don't know about other people, but some of my fondest childhood memories are of my Dad teaching me a wide variety of dirty limericks.
ReplyDeleteIn days of old...
HAHA! Love it! We keep joking that we need to program some "words of anger" on Mason's device...you can just tell that if he could talk, there are times he'd be seriously telling people off! Thanks for the laugh, Rob! I needed one this week!
ReplyDeleteTo me language/ words are enpowering for Schuyler. These are words that she hears everyday. Either through t.v., books or even songs. We are putting an icon with those words. Plus, she is in the 3rd grade now. She'll hear them eventually, probably on the playground.
ReplyDeletei only just found your blog a few days ago, but i have to say that reading about you and schuyler and the way you interact together delights me! absolutely DELIGHTS me! for all that schuyler is "broken", she sounds far more wonderful than the majority of "whole" kids i have met. monkey fart. seriously. what kid would be complete without the term 'monkey fart' in their repertoire? :D
ReplyDeleteSummertime boredom! It's as much a part of childhood as learning exciting new words like "monkeyfart" and kicking the back of the car seat until your father tells you to cut it out or he's going to stop the car and then you'll be sorry.
ReplyDeleteOne way to relieve summer boredom is signing the kids up for lessons: riding lessons, trombone lessons, samurai sword-fighting lessons. Whatever.
Day camp might not have worked out but there are probably summer activities in your town for kids. The library probably has crafts, movies and reading groups for kids your daughter's age.
Here in my town they have something called Junior Book Explorers or some such thing. The kids shelve books and help the full-fledged librarians for a few hours a week. At the end of the summer they have a trip to an amusement park.
Oh yeah, there's always vacation Bible school. I used to threaten my kids with that when they were younger. It worked like a charm in stopping whining complaints of having nothing to do...
-Suzanne
Oh yeah, there's always vacation Bible school.
ReplyDeleteOnly if I can send her as an agent of rebuttal.
It's musical fruit, Rob. :)
ReplyDeleteI said "fartknocker" in front of the girls, which is one my mom used to use liberally. They have modified it to sometimes say "snotknocker" instead, which cracks me up.
Oh, also? If you're really into laughing at the farts, I recommend locating a fart machine with remote control. HOURS of fun, that thing.
ReplyDeleteMust be a regional difference; it was magical fruit where I grew up. And really, magical makes more sense. The bean itself is not musical, but the effect it has on you? Pure magic...
ReplyDeleteI am willing to pay money to fly all the way from south africa just for the puppet show...
ReplyDeletegreat post!
My question had less to do with the actually BBoW additions and more to do with you being the cool, laid-back dad. As I said, I envision the me of the future being the uptight, 'uncool' parent - and I just wondered if Julie ever feels that way since you and Schuyler have this great, goofy relationship.
ReplyDeleteNo judgement :) Just wondered how that dynamic plays out in your family.
I don't write about it much since it's not my story to tell, but Julie and Schuyler have a pretty similar relationship to the one that I have with her. I don't think there's really an uncool parent in this house, at least not in the sense that one of us is the goofball and the other is the hardass. No bad cops around here.
ReplyDeleteAh, absolutely, one NEEDS to know those kind of words. :-)
ReplyDeleteIt's from an entirely different arena, but this all reminded me of a little scene from a play I was involved with once, with American and Chinese students befriending each other; one of the best scenes in it began with the Americans teaching the Chinese students the word "shit", saying it was "a VERY useful word".
I remarked on the scene to the playwright, and he just grinned and said, "well, yeah, what's one of the first things you want ask when you meet someone who speaks another langauage? How to cuss!"
"I don't think there's really an uncool parent in this house, at least not in the sense that one of us is the goofball and the other is the hardass."
ReplyDeleteNot knowing Julie or much about her, I certainly didn't mean to blindly label her uncool - it just seems that that is usually the scenario in most households. Someone being the bad cop. Glad to hear you both have a sense of humor and a great relationship with your daughter! Schuyler was born into the right family!
Thanks for the idea Rob and Schuyler!!!
ReplyDeletehttp://peanutandsweetpea.blogspot.com/
"well, yeah, what's one of the first things you want [to learn how to say] when you meet someone who speaks another langauage?...
ReplyDeleteThat, or this.
Seriously, Rob, you did the right thing.
Summertime boredom hits every kid, and I'm sure more so for Schuyler who has to go to extra effort to communicate with neurotypical kids. In Texas especially, where it's hot and humid, the last part of summer just makes you want to nap. But I do vaguely remember getting into absurd but absorbing crafty or outdoorsy projects at that time of year. Maybe Schuyler could make a castle for crickets, or give her dolls (if she has dolls, or stuffed animals) new hairdos with food coloring, or build a chess set out of Play-Doh or something. I realize she's still young enough to need adult supervision for many crafts, so that does make it tougher...
You should really teach her the IMPORTANT 7/8 year old words.
ReplyDeleteThings like "booger miner" and "fart farmer", for example.
My 7 year old daughter feels that "flarp underwear" is also giggle worthy.
I have no idea what it means.
Here is another rhyme for Schuyler.
ReplyDeleteBeans, beans are good for the heart,
The more you eat, the more you fart.
The more you fart, the more you eat,
The more you sit on the toilet seat!
and
The cat crept into the crypt,
Crapped, and crept out again.
Love Smelly Head
Classic - but you left out the rest of the song, which my dad used to sing: "Beans, beans, the musical fruit! The more you eat, the more you toot! The more you toot, the better you feel! Let's have beans with every meal!" Oh yeah, my mom loved it when he sang that at the dinner table every time she served baked beans!
ReplyDeleteI am here to tell everyone that Rob's speech at the conference was a wonderful success! You could hear a pin drop in the audience and there was very little fidgeting or getting up to leave. As with the writing, his speaking was very powerful and you really felt like you knew this family. Schuyler got up and even gave all 500 of us a hi. Hey, I think it would have been very appropriate to include this icon story in the speech! I know it would have gone over very well.
ReplyDeleteOn a different note, I love to tell people I consult with to give the kids things to say that their peers are saying. I love it that you did this for her as nothing else quite expresses feelings like a few well placed swear words.
Question: What does this mean????
""On the Importance of Adding Scatological References to Assistive Technology: Case Study" :"
You rock!
ReplyDeleteI really want to know what the Icons look like too.
Awesome. All kids need age appropriate words, including the inappropriate ones and swears too. If they "say" them at the wrong time, in front of the wrong people then they get in trouble. Just like any other kid. Who are we to eliminate opportunities to learn social skills by depriving students language?
ReplyDeleteI teach teenagers who use AAC. The SLP and I always include words/phrases like burp, fart, shut up, buzz off, no you didn't, talk to the hand, etc.
A few years ago an instructional assistant reported me to my boss because the kids were calling her a farthead (using AAC). I was called on the carpet. I explained three things 1) the SLP programmed that not me, 2) disabled does not mean angel and we have no right to program devices as if it does, 3) this was actually NOT age appropriate, typical teenagers would have called her a bitch.
In the end the aide was moved to another room. Farthead continues to be a popular word. Right now the kids can only "say" bitch if they can spell it out.
I was trying to think of some good child swear words for Schuyler, but I couldn't. I've forgotten them all. As soon as I was allowed to use adult swear words, the child versions left my brain. It's like when I was given a calculator in school: all knowledge of long division disappeared.
ReplyDeleteThe only non-offensive phrase I use is when I make a stupid mistake (usually transposing numbers when I'm reading them out) and I call it a brainfart.