Schuyler had a spelling test on Friday, like she does every Friday. (I'd like to point out that the idea of little Baby Schuyler taking a first grade spelling test makes me feel like the oldest old fart in Oldfartopia.) This might seem like the most boring thing in the world to share with you, but I want you to stop for just a moment and ponder the metaphorical canyon that one is required to leap across in order to learn to spell when you are incapable of speech.
Imagine learning your letters. Imagine having to learn the sounds that they make, sounds they make for everyone but you. Imagine then having to take those sounds, alien to you in any real, meaningful way, and put them together into words. THEN imagine having to take those words and deconstruct them in your head into the sounds that you can only hear and never make, and use the letters that you have learned to construct those words. Imagine having a teacher say a word to you, sounding it out, and you sitting in a class surrounded by other, neurotypical kids your age who can then put all these pieces together in such a way that it makes perfect sense to them, but will never be able to make sense in a tangible way to you.
Spelling has been challenging for Schuyler. We work with her on it every night, taking the list of words for that week's test and drilling it. We sound it out for her and she types it out, not on her device but on a computer keyboard, because that's what they use in her mainstream first grade class. It's hard for her to write; in addition to stealing her consonants and rendering her non-verbal, her monster fumbles her clumsy little hands, too. So she uses a computer keyboard, and I think that's fine. She's getting quick on her device, but she needs to be able to use the tools of the speaking world, too.
It's frustrating. She tries so hard, and when she can't grasp it because the sounds are hard for her to distinguish, it's easy to lose hope. This has been one of the few times that her condition has caused her real anxiety, and it's heartbreaking. She tries, and when she fails, she loses her focus. I have been telling her that she has to try harder than everyone else in her class. I don't tell her why, because how do you tell a six year-old that she's broken?
Besides, she already knows. She may not care very often, and she's certainly more positive about it than anyone around her, but she knows. Better than anyone, I suspect.
After a couple of weeks with dismal test scores, and after a week of hard drills with her that didn't seem to go anywhere but frustration, we were happily surprised to learn on Friday that she had scored seven out of ten correctly on her test, including the harder words.
I think she simply got tired of the frustration. In her head, I believe she said "Oh, screw this," knocked her monster out of the way and figured it out. It's too early to say whether or not she's really got this down or if she just had a good day, but I think it would be hard for her to "accidentally" spell words correctly. I'm hopeful.
Schuyler clearly has a learning disorder, that's a no shitter. Put a strip of duct tape over your own mouth and leave it there until the day you die, and see how well you grasp the mechanics of language. One unknown issue was always whether or not CBPS was going to take the same bite out of her that it does other CBPS kids.
Schuyler's monster has two ugly stepsisters that loom over our thoughts and fears: seizures and intellectual disability. Seizures we won't know about until (and if) they arrive. I think it is becoming clear, however, that although Schuyler may never be one of the world's great thinkers, she is not hugely mentally impaired. She's clever, she's determined, and most of all she's tenacious. She doesn't like to be told what to do, a trait that I encourage in her every chance I get, so she has to decide she wants to do something first. And then? She just fucking DOES it.
That's Schuyler's nature, and she comes by it honestly. I have no idea how smart she really is, not yet, but I also don't think it matters. I'm not all that smart, either, and I'm doing okay. She's going to do okay, too.
26 comments:
Two big thumbs up to Schuyler!
I've never even met her and I can tell she's clever as hell. One has to be to not like being told what to do not to mention deciding that pink hair is a must have for a 1st grader. Spelling was a bitch for Rymer too, so much that I had him evaluated for LD. The thing is that with him it simply had to "click" until that, letters might as well been gibberish not associated to words he says. With Schuyler as you mentioned, it actually is different. The seizures, yeah I can see the worry there especially given that each Monster Case is so damnably different. How does one even navigate a place where the street signs change every five minutes. Take my D. and Schuyler, same Monster yet completely different landscape. Even though D. hasn't had a seizure since his teens, every muscle twitch in his sleep fills me with dread..but know this, he's as "punky" as Schuyler, is better at math than I am and kicks his monster's ass every day. Something tells me Schuyler will be the same..and some of the world's brightest people can't spell for poo. It's why there's spellcheck. Right on for her getting 7/10 of the words, that's no accident..that's determination. Which should have been that little girl's middle name.
She really is my hero and I'm grateful to you for sharing her life with the world. It helped me to understand certain things I didn't 6 years ago when D. and I were together the first time. It's a different navigation for me than it is for you but at least I have somewhat of a roadmap thanks to Schuyler.
I only wish more was known. I think we are probably going to have to lean towards not having children together until more is. Those ugly stepsisters scare me too much.
Go Schuyler. That about sums it up for kids like her - it sucks, but it just is.
One thing you may want to check out is "cued speech". Typically it's used (ok, "typically" is a stretch - it's not used often) with deaf kids (who can't hear the sounds in the first place - so they're challenge is also pretty daunting). It was designed to make the internal non-visible speech sounds visible. You could look into using it with productive language too - it might help Schuyler with decoding stuff.
As a parent, I find the hardest part is not really knowing what's on the horizon, KWIM??
Here's something to try on the spelling words that might make the drilling more fun AND may help her remember better by kinesthetics. Have her spell out the words using her body. There are multiple ways and all of them are right. C, for example, can be a cupped hand or a bent body on the floor. You also want to have her practice as she will have to do it but this method provides variation and a different type of reinforcement. And yes, you and she could compete for the craziest way to make certain letters as long as you don't lose focus altogether.
I'm glad your daughter is doing so well. Go kick some spelling ass!
Rock on Schuyler, Rock on!
Like I said eons ago, I think she is smarter then she lets on and given the chance to push forward and push outward...she'll suceed.
That whole "don't tell me what to do" attitude is the key.
I think some vendors make "virtual" keyboard software for use by people who have physical disabilities that make it difficult to use standard keyboards. You just touch the onscreen keyboard and it sends the keystrokes to pretty much any app that runs in Windows. Maybe the school would outfit a few desktop systems with that, to help Schuyler and the other children who could use such a tool. It doesn't seem like an unreasonable accommodation for a mainstream classroom, but what do I know.
I wasn't very clear. She does perfectly fine with a standard keyboard; her clumsy hands make it hard for her to write by hand, but she can type without much difficulty.
The only reason the use of the computer keyboard rather than her device is an issue (and not a big one) i that the BBoW is set up so that when she goes to spell something, the letters are aranged alphabetically, not QWERTY. So there's a little bit of a learnng curve, but one that will benefit her in the end.
This made me cry. I have Attention Deficit Disorder, and while my monster is a cute little fluffy bunny compared to Schuyler's, I'm somewhat familiar with what it's like to not be able to grasp something the rest of the world seems to take for granted. I'm so proud of her "nothing's going to keep me down" attitude.
(Is it weird to be proud of someone you've never met? I don't know, but I am.)
You know, I was thinking back to my spelling tests on Fridays and remembered something I hadn't thought about in years: I used to practice the spelling words by "spelling" them on my hands--with ASL. It actually helped me to memorize spellings because the rhythym and movement of the words became sort of second nature. Admittedly, sometimes during the test I had to spell it out on my hands under my desk, but it worked like a charm. I don't know if you're just having Schuyler type them, but to me there would be a horrible disconnect there, since I'm so visually oriented. I would have to sit and think about the keyboard before even trying to spell. For someone who signs anyway, I would think using a signed alphabet, at least to practice, would be a better way to "implant" the spelling in her brain.
Just a thought. She's wonderful--
Jennifer
Nothing at all to do with the subject, but I saw this, and thought of you, which is weird, granted, but...
http://kcomposite.com/bumper/bs43.html
I think alot of the comments have captured to some extent what I feel which is that Schuyler is having a pretty normal experience. In fact, the more I read these more recent posts, the more "normal" she seems. I live in France and recently had a talk with an older mom about how much it bothered me to put my daughter in French school because the system is so much the opposite of the American one and I just felt that it was cruel. She reminded me that I was comparing it to my schooling and these kids never know that experience so they never complain about what they see as normal. She said I should wait to see if Ella liked it before pulling her out. It was a good reminder about how Ella is not me, she has her own personality, and I've got to let her have her own experience. You get reminded daily about all the things that are different for Schuyler but reading the blog, the things that are the same with other kids is what really comes through.
This is the first time I think that I have commented and so I might as well mention something that has kind of bothered me about your posts. I know that you don't know the extent that Schuyler might suffer from seizures, but lots of people have epilepsy and it is not necessarily debilitating. You always mention it with such horror that I feel really uncomfortable. I never felt so bad for my sister as I do when I read your blog. My sister grew up having seizures, and I remember when I was 10 and she was 7 and I had to help her through a grand mal. Its scary but as a kid, we just dealt with it. We went to a small school in a small town and so everyone knew about her and it never occured to me that she was different in an embarrassing way.
This is the first time I think that I have commented and so I might as well mention something that has kind of bothered me about your posts. I know that you don't know the extent that Schuyler might suffer from seizures, but lots of people have epilepsy and it is not necessarily debilitating. You always mention it with such horror that I feel really uncomfortable.
Well, that's not something I can help you with. Seizures kill a small but significant percentage of CBPS patients. It is the one aspect of her disability that could ultimately prove life-threatening to her. I don't think horror is an inappropriate reaction.
I've long since come to the conclusion that the people who do well in this life are not necessarily the brilliant ones or the talented ones. They are the ones who persist. Tenacious persistence is a most underrated character trait, and in my experience, the one most likely to guarantee success in any endeavor.
Christopher wrote:
Something you should know: the research is pretty definitive at this point - kids don't really learn to spell from weekly spelling lists. Having taught 4th & 5th grades over the last 4 years and having 3 school aged children, my empirical data backs up the research.
I say: Exactly!I taught 11th grade English for 30 years. Vocab tests were a good time-consuming Friday activity, but I was always more interested in a student's ability to understand a word and use it in a sophisticated sentence than I was in his ability to spell it correctly, especially when you get to college-level vocabulary.
Christopher further writes: Good spelling correlates highly to the amount of reading and writing that a child does.
And sometimes highly intelligent people have something of a spelling disability. I had a student who really did go on to become a rocket scientist for whom spell checkers were no help -- all the choices looked right to him. He could sometimes spell things wrong two different ways on the same page! I had another student who became an accomplished art teacher and soccer coach who also had a spelling disability that was legendary among his teachers.
Good luck to Schuyler, and congratulations on sticking with this task!
As her reading skills get better, and she's able to read more on her own, Schuyler's spelling skills will improve, too. The two skill sets go hand-in-hand. It won't always be this hard for her- she's going to hit her stride very soon!
She's starting to look like such a big girl.
I'm so happy to hear that it looks like Schuyler has dodged the MR than can go with her disease. My youngest sister has a cognitive impairment due to a neurological disorder (also congenital) and it might help to know that although her life has not been easy, she is 29 years old now, lives on her own and is getting married next year to a man who also has mild mental retardation. It can be done and with you and Julie in her corner, Schuyler will continue to do great things.
Please tell Schuyler how pleased we were to hear that she had spelled most of her spelling words!She should be so proud of herself..and both of you should be pleased that all your work payed off!!
Go Schuyler!! I teach 1st grade, and I have a 3 year old....that is not talking. To get 7 out of 10 words right is AWESOME!! At this point in the year...I'm happy if my students get 5 out of 10 right...so, you go girl:). As a parent of a child that is not verbally communicating at this point...Schuyler gives me hope...hope that there are OTHER ways to communicate....and she is doing a wonderful job!
I read all of these, Lesa, and I appreciate your thoughts!
7/10? Totally awesome. If she was a british University student, she'd have just got herself a first-class degree with that percentage.
Would it help Schuyler to have her Box setup with a QWERTY keyboard in spell mode? I believe it's fairly easy to change it through the toolbox menu.
Would it be OK if I shared your blog URL with some UK BBoW users and parents roundabouts the place?
Of course! Share away!
I'll have to check with her Box Class teacher. I suspect her whole class is using the alphabetical keyboard and they might not want her to switch. I also think in the long run it might be better for her to learn both, since she has to find the letters and recognize them out of sequence.
I'm emailing her teacher right now to find out, though. Good suggestion!
I second and third what some others have said...be creative and try some alternative techniques. I don't have a monster, but I do have a terrible time spelling and it was very frustrating when I was young. When I was in 5th grade, I started to practice by writing the words big and hanging them on the wall. If it was, say, a 5 letter word, I'd take 5 steps towards the wall saying a letter on each step (usually in my head, although asl would work too). Then turn around and walk 5 steps back spelling it the same way without being able to see it. My mom found this idea by talking to some homeschooling friends of hers.
This technique, or one of the other ones mentioned might work better for Schuyler depending on what sort of learner (visual, aural, kinetic) she is and if she ends up having trouble with other subjects, there are lots of other ideas out there on the internet. You might especially search for techniques they use to teach deaf people to spell.
Good luck.
Way to go, Schuyler!
Rob, even when she is spelling words wrong, is she close? Does it look somewhat phoentic--like she's sounding out the word correctly if not spelling the word right? If she is, the spelling will come in time.
When I taught, we tried different methods of spelling out words...writing it in the sand (visual and "touch"), spelling with our bodies, ASL. Hopefully, you can find something fun and creative to help Schuyler continue her great success!
Many non-verbal children will read & write very nicely upon middleschool to highschool -regardless of IQ level... Personality Drive & Creativity play a BIG part here. So I've seen ;). Although, none have her "Particular Monster" BUT I assure you there's a whole "League" of monsters w/the kids I know. AND THEY ALL ROCK ON SOMEHOW. Actually they kinda make us look like pussys sometimes.. Kindly excuse the swear "I'm a MASSHOLE" LOL! It WILL be okay - I've been living a very similar lifestyle for 16yrs. (w/kids).. You WILL break ONLY to be REMADE :)
I am very impressed by everything you do for her. And even more by everything she does.
I see that she understands language but doesn't speak - that probably means she does form the words in her mind in some form or other?
Her handicap is even bigger because unfortunately her language is English - if you can't speak and have to learn to spell, it must be even more tedious to master English spelling, because the spelling/sound relation is very inconsistent. If she already can distinguish sounds, there's no way the same sound is always spelt the same way, not at all.
Funny that the class uses an alphabetical keyboard by the way - six year old kids don't know the alphabet yet so it doesn't help, i think it's confusing rather than helpful... that, and no big deal, of course.
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