proof

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Refusal to believe until proof is given is a rational position; denial of all outside of our limited experience is absurd.

~ Annie Besant

“Worrying that I will not be thought intelligent.  I am considered stupid by people who don’t know better.”

~ Emma from Emma’s Hope Book in Talking is Hard

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The other day, I read (yet another) beautiful post by the inimitable Ariane Zurcher at Emma’s Hope. Ariane has been sharing her daughter, Emma’s incredible recent progress with us, and, even more excitingly (no offense, A :)), Emma has been sharing her thoughts with us as well. Emma, who, like Brooke, speaks but struggles to communicate verbally, has begun to share her eloquent, inspiring, and heart-stirring insights in writing using a method called RPM, which Ariane has written about at length on her blog. It’s been an honor and a privelege to read Emma’s words.

In her post, The Opposite of False Hope, Ariane wrote the following:

For those who have read what Emma is currently writing, all of this will seem a little strange.  You see, Emma has told us that she already could read more than two years ago when we were breaking everything down to its most basic, going over one word at a time, over and over, making sure she knew it before building on to the next and then the next.  All those years spent going over the concept of addition or subtraction, only to have her flounder when asked what 6+5 equaled.  Or when asked, “how do we spell “cat” she would remain silent or if asked to write the answer by hand or to type it, she could not and so we assumed she hadn’t learned the word yet.

As I read, my heart swelled with hope and joy and … possibility.

We believed that because she could not read aloud a level one reader, or answer a question about the contents of that story, it meant she was unable to read or understand. When she was unable to answer us, little things like, “where do we go to buy milk?” and she would giggle and say something completely unrelated like, ”it’s Mommy’s turn” I would then despair, look at my husband with fear and believe this proved, yet again, just how far we had to go. There were other fears too. Fears about what all of this meant to my child for her future, but increasingly I would try to head those off with a kind of stoic resolve to not give into them and to review once more the concept of quantity, or time, or value, or the spelling of a single-syllable word.

My heart stopped for a moment, acknowledging … recognition.

Of course looking back I see how wrong we were. I understand now that the problem was she had no way of communicating to us what she knew. She could not “tell” us, she could not “show” us in any way that we were able to see. All those reading comprehension questions, all those work sheets, all that fear, all those days, months, years spent in terror… I see this now. I “get” it. Now. Now I get it, but for so long I did not. For so many years I didn’t understand. I kept thinking she couldn’t learn. I kept thinking what was being said to her wasn’t understood. I kept thinking that I had to use more basic language, that I was complicating things, that the answer was to dumb it down, to do more review, more repetition, more of the same, over and over until she could answer me in the way I believed showed she’d learned.

My heart clenched with fear and balked at the sheer volume of that which is unknowable.

How do we strike the right balance, we who have yet to find “our” RPM?

How do we ensure that we’re not drilling C-A-T with our children if they’re ready for Tolstoy, yet how do we ensure that we’re not shoving War and Peace into their backpacks when they really need to start with cat?

Where do we look for some sort — any sort — of validation of where Brooke is, of what has meaning for her and what doesn’t, of what she understands (right now, this very minute — so different from the questions about that of which she is capable, which is everything) when words are so unreliable for her? Where do we look?

How do we, her parents, her educators, all of those who support her in her quest to be the very best version of herself that she can possibly be, how do we meet her where she is when it’s so damned hard to know where she is?

If we assume, likely rightly so, that she knows and understands far more than she can “prove” to us within our narrowly constructed framework of understanding, where EXACTLY do we go for the right kind of proof?

The other day, I posted the following on Diary’s Facebook page.

After reading Brooke’s 19 page (yes, really) progress report from school this morning, I highlighted 5 sentences. The following was one of them. It came at the end of a paragraph explaining which types of texts the literacy specialist has been using with her and why.

I highlighted this particular sentence because I’m going to copy it into an email to her team. In that email, I’m going to tell them just how many things are *right* with this tiny, seemingly insignificant sentence and with everything that it represents. And I’m going to tell them how very much I appreciate them understanding that demonstrating proficiency is not the same as having it, and how grateful I am that they see that my girl is capable of far more than it might seem, that they never settle for anything less than everything she can do, and that they so whole-heartedly support her as she stretches toward becoming the very best version of herself that she can be. This is the sentence:

“This indicates that Brooke can be successful with higher level text if she is provided with appropriate accommodations to demonstrate what she knows.”

‪#‎PresumingCompetence‬
‪#‎NoLimits‬
‪#‎TeachersRock‬

One of my favorite readers had a question:

Here’s my question regarding that statement (as close to wonderful as the statement seems!!). Are they aware that she can be successful even if she doesn’t demonstrate what she knows to others (even with accommodations)? Because I’m pretty sure that neither Brooke, nor [my son], nor a lot of people can demonstrate what they know, even with great accommodations, BUT that sure does not make them unsuccessful! I believe in providing the very best opportunities for learning, and having trust that a person like Brooke or [my son] is experiencing success in their own way, regardless of what outcome we can see or measure! Just my reaction (from a mom whose best teacher, [her son], reminds her daily that knowing things is very different from showing what one knows!)

Here’s what I wrote back.

I whole heartedly do. The whole point is that they are investigating and searching and pushing even though she is currently unable to “demonstrate understanding,” they know (based on observation and understanding and a little faith) that she’s getting it, so they’re pushing further.

But the question stayed with me. How do we know?

On Thursday morning, we sat around the table with Brooke’s team at her IEP meeting. The literacy specialist who wrote the words I’d cited was talking about her work with Brooke. She explained that she’d chosen to completely change the way that she’s evaluating where Brooke is, and that doing so has, in her words, changed everything. She told us that based on the previous method of evaluation, Brooke’s reading level had long ago plateaued at approximately late kindergarden to early first grade. (Ed note: For reference, she’s in fifth grade, heading to middle school next year). This wasn’t news. While she’s long been able to decode just about anything, she struggles mightliy with comprehension. We think. While she can read aloud with varied voice and intonation changes, she has a great deal of trouble following the arc of a story or making any kind of inferences or predictions or assumptions about characters or what they may be thinking or feeling or even what they might do next. We think.

But we only think these things based on what she is able to convey to us and what we are able to see and understand. But what about the ways that we can’t understand? How do we get to that?

Ms D went on to explain her decision. “While we typically evaluate reading level based upon what a child can do independently,” she said, “I realized that that approach just wasn’t appropriate for Brooke. She doesn’t go through life without support. So what she can do without any support at all isn’t really reflective of what she can do. She has the accomodations that she has for a reason; she should have them in testing too.”

“So I changed everything,” she said. “I no longer handed her a book and sent her on her way. I no longer asked her questions and accepted her first answers as what she knew, because we’d never do that when we were working with her. I pushed for more from her. I waited her out. I prompted her. I said things like, “I know you know.” I made it clear that we weren’t going to move on without the answer. Sometimes we waited a really awkwardly long time. And it came. I did everything I could to mine below the surface and to find the authentic Brooke within her words.”

I was now crying openly at the table as I scrambled to type what she had just said.

I did everything I could to mine below the surface and to find the authentic Brooke within her words.

Using this new method, she explained, Brooke is now testing at at late second to early third grade reading level. She told us that being at this new level has allowed them to move on to far more content-rich material. Her classroom teacher would talk later about how Brooke has been able to participate in a group project on the Renaissance, using an online research tool “geared to her reading level.” I wondered as she spoke if she would have been able to find facts about her subject, Leonardo DaVinci, using a kindergarden reader, I guessed probably not.

Nearly three hours after we sat down, I walked out of that meeting as hopeful as I was grateful. My kid faces a lot of challenges. But she’s got a hell of a team behind her.

As for where the proof lies, I don’t know the answer, or more likely, answers. I’m still overwhelmed by the questions. I’m still looking for Brooke’s RPM. In the meantime, I can only use my Mama gut as a guide and, in each and every situation, push until pushing stops feeling like the right thing to do. And I can ask everyone in my daughter’s world to do what Ms D has done. To toss out “what’s usually done.” To think outside the box. To keep searching for evidence of where Brooke is, whether or not that evidence turns up where it’s expected to be.

To mine below the surface for the authentic Brooke.

And at the end of the day, I’ll look for one piece of evidence that we are doing the right thing. My daughter’s smile. That, my friends, will be proof enough for me.

20140301-080341.jpg

{image is a photo of Brooke laughing at Luau, who is making a really funny face at her over a chair in the auditorium where we are waiting for Katie’s concert to begin. Everything about her body language indicates that she is relaxed … and happy.}

Ed note: Dialogue is not exact, as it is to the best of my recollection and I suck at taking notes while crying. We all have our challenges. 

Ed other note: Huge thanks to Ariane and Emma for so generously allowing me to use their words.

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33 thoughts on “proof

  1. “To mine below the surface for the authentic Brooke.

    And at the end of the day, I’ll look for one piece of evidence that we are doing the right thing. My daughter’s smile. That, my friends, will be proof enough for me.”

    That says so much, Jess. Perhaps, that says it all.

    Love you,
    Mom

  2. In a way, we’ve all had that feeling haven’t we? Try to explain what you’re capable of during a job interview. You know you can do this job, but how to explain it in such a way that you can convince the people who are hiring? And often, even when we know how capable we are, we simply don’t succeed in making the other person understand. (And in my case, they often end up hiring someone who “has a personality that is a better fit with the current team”. Yup).

    Explaining our capabilities, especially when we are limited to words the other person is capable of understanding, is a hard job.

  3. For many reasons I needed this this morning. Right now hand writing and confidence are big issues for my son. He has made so much progress but one teacher eroded a lot….
    We are “pushing” with support handwriting as I know he can achieve it to the best of his ability.
    What you write here makes much sense. Thank you for sharing.

    • Just a thought – handwriting is becoming almost obsolete for the next generation. Almost everything is jotted down on a tablet, sent via text or email, filled out online, typed on a shared doc file etc. Many of our kids struggle with writing and are making the choice to spend their energy elsewhere because it’s so seldom used in everyday life. If it’s important to him, well, that’s all that matters, but otherwise it might be a place to relieve some pressure. ;)

      • Jess May I say thanks to you for sharing Brooke’s emails. It was the inspiration for me to encourage my little guy to email his grandfather (who lives overseas) on a regular basis. Helped on many levels..including typing skills, sharing news.

    • My son had the same issues with handwriting and it was really becoming a nightmare, for him and his teacher.The school provided him with an Alpha Smart. It is like a word processor. He types his work and the teacher can print it out from her computer in the classroom. It was like night and day after he started using it. He uses the A.S for when he has to do a lot of writing and he still handwrites short answers, so he still is learning handwriting skills. He also knows that he is responsible for it since it is school property so he makes sure it is in a safe place.

    • My son has severe issues with handwriting, and we made the decision that in this day and age, it was time to stop making him spend so much energy on it. We moved him to an Alpha Smart (as well as the ability to dictate), and it has made such a difference in promoting independent work in the classroom, as well as his first stabs at independent homework. Instead of having the school one go back and forth, I found a used one on Ebay (saw them run anywhere from $25-$75, depending on the shape they were in, and even at $75 it’s a fraction of the cost of a new one.) The confidence has gone up with the increased independence – just a thought :)

      • Thank you everyone for sharing your stories. It also helps to feel not quite so alone. We are utilizing both as he is 7 and typing too is hard. He also has some processing issues. We are home schooling because where we are in the UK just didn’t get it all. No help medically and none educationally….
        We have a tablet and a an alphasmart.
        Your advice has made me rethink as I often do. Thanks for helping.

  4. Thank you for this, and thanks to Emma and Ariane too. We, too, are still looking for our “RPM.” My son has “plateaued” in academics and, in eighth grade, has been moved to a “life skills” track. But, I believe, I know – despite the doubt that lurks about us constantly – that he understands more than he can say, and I worry how much dumbing down he receives. Each day I struggle for the ways to understand what he knows and, most importantly, what he is yearning to know.

  5. Apparently when I was about 3 or 4, somebody or other (a health visitor maybe?) was trying to give me a test. She was asking questions like “Can you point to your knee?” and “Show me something green”. I stared at her blankly, saying nothing. My mother was just beginning to despair when suddenly I turned to her and asked,
    “Mama – does she want to know in French?!”
    I had no trouble with the questions, I just didn’t understand the situation and why the adult was asking such daft, easy questions!
    That’s the story I remember now when my autistic daughter seems unable to reply or do something simple. Heaven knows what’s going on in there, but it’s not nothing. It’s not stupidity. For all I know, she’s translating everything into French.

  6. Saw this video on my facebook – I’m not familiar with RPM, but is this what they’re doing?

    It’s a nice “awareness” video from Golden Hat Foundation – a HUGE departure from those who shall not be named.

  7. Jess just tagged me on this comment, so I’ll jump in… at the 40 second point of the video, a little boy, Baxter, communicates by pointing to letters on a stencil board. That is the way we began with my daughter, Emma. Then moved on to letters on a laminated letter board (the way Will does in the video) and now with one person Emma is typing on an independent qwerty board attached to her iPad with the eventual goal of being able to communicate this way with a computer and the internal iPad keyboard.
    PS Guila in the video is such a great example of how my daughter also does math. She cannot “show” her work, it’s all done in her head and she will point to the correct answer on the number stencil board. If asked to “write the answer down”, or use multiple choice even, she cannot do it. But with the stencil board, when held by someone she trusts and has worked with, she is able to do complex math. Meanwhile if asked to use spoken language and asked “what is 7-5?” she will not be able to respond. At the 4:32 point on the video, the clip with Matt, was astonishing for me to watch, because he is so much like my daughter, it is uncanny. At the end of his clip, he is quoted as saying, “What I say out loud isn’t always what I am thinking.” Emma wrote recently, “My mind talks heavy thoughts, but my mouth talks silliness.”
    Great video. Thanks for sharing it!

    • This video is incredibly beautiful <3
      I've been reading your blog, Ariane, and Emma's writings, and I am so moved. Thank you for all that you share :) Tommy also wrote before speaking, and require many kinds of support, prompts, hand over hand, which was faded eventually to support in the form of a trusted person simply nearby, and now he uses his iPhone, iPad, and keyboards independently. It has been, and still is, an amazing ongoing journey. Like Emma, he writes stories, which began before he was even able to verbally communicate more than a few words. Such a long story, all this to say, thanks for sharing your journey and Emma's with us :)
      MaryAnn, Tommy's mom

    • Thanks for your explanations. Though my son has been “verbal” for most of his life, he still is not always able to express himself as he wants. But the math stuff is so spot on for him…and because he was always in a general ed classroom, the teachers had such a hard time with this! He still gets points off in high school for math because, even though he can do it in his head, he has a hard time getting it down on paper. And I love Emma’s quote!!

  8. Anyone who is interested may like to look at video on youtube entitled “the case against assistive technology”. It is very powerful. It is actually saying the opposite of the title…

  9. Thank you so much for this Jess. I have read this at just the right time. We have my 6yr old son’s IEP meeting this week and I’m going to read this to the team. We have struggled with everyone being on the same page as far as giving our son what he needs and truly accommodating him and this is it. This is what I needed to read and what they need to hear to understand how to accommodate him on a who other level. IF they thought we were the annoying, nitpicking, in their faces, making sure they are doing their jobs kind of parents before they better be prepared for us to turn it up a few notches. So thank you again for putting to words what I was feeling and helping me have a voice so my son can have a voice too, however that may be.

  10. I think Emma and Brooke (and me!) all stand as great examples of how the presence of some (even a tiny bit) of expressive language can serve as a huge barrier to services and the real presumption of competence. I have a huge amount of trouble expressing and sharing what I know without the proper prompting and support. And I have, like, stupendous expressive language. At least, when I have access to my expressive language whatsoever, I have stupendous expressive language. Other times I have none.

    I can figure out the mechanism of advanced organic chemistry reactions faster than my research advisor, at times. But if you tried to assess my knowledge by asking me about specific reactions, by saying “Emma, what’s the Pauson-Khand reaction?” I would appear to have the knowledge of a Organic Chemistry I B-student. Because that’s not how my knowledge is organized or accessible. I can handle cultural theory/literary criticism with a level of ease that matches, if not surpasses, most of my professors, but if you just ask me about names, or ask me some “Fill-in-the-blank”-style question, I’ll appear to not know anything at all.

    If I have any insight or advice into this, it’s to offer as many external cues/resources as humanly possible. I need at least a few minutes of warm-up before I can answer any in-depth question at length. If someone takes my initial answer (often “I don’t know” or something really inarticulate) as evidence of my knowledge, I’m screwed. I really like using things like those magnets with words on them, or making collage-type-things with pictures from magazines, or using lots of quotes from specific texts intsead of having to use my own words.

  11. We haven’t found “our RPM” either but hell he’s only 4…right now it’s his ipad…before technology he was that aspies”trapped empty shell” for a few mos after we questioned…then we found Emma…and Brooke…and ido…and barb..and the countless others who taught me those preconceived ideas I had were probably false and made me realize the whole monkeys on a typewriter thing…we were so caught up in he couldn’t possibly do that we neglected to see the what are the astronomically low chances he DIDN’T do this on purpose…when that perspective shifted…wow. we as parents constantly play catch up..as I’ve told ariane…I think presuming competence isn’t enough. I thought I was doing well at the whole presuming competence thing.. but I was doing so on a 4year old level….he’s shown in many ways he’s light years ahead so I’ve had to rethink…and just find the true E. I’m prob still way behind but he (sometimes not) patiently waits for me to catch up lol. He’s still completely nonspeaking so Emma and Brooke are ahead of him but I think in some ways that’s a blessing because ppl don’t judge his intelligence on his scripts or echolalia etc. As mommy bears we just gotta keep looking.. and fighting

  12. Ok my phone thinks it’s a really smart phone that can guess sentences…so if a word seems out of place especially before punctuation or numbers it prob my phone smdh

  13. Once again you have managed to write a post that takes hours to read. There is so much to think about, absorb, twist, fluff and meld into how it applies to my family. I wind up reading a few paragraphs – stop and do something else for a bit while I let it bounce around and grow – then I go back and read a little more.

    Ariane, Emma’s stories have brought me to tears at work. I have been telling anyone that will listen that everything is in my daughters head – we just haven’t found a way for it all to come out (she is only 4). I am overjoyed that you guys found a way for Emma to let it all come out.

    Love you both. Keep writing, you both have a huge impact and are helping so many people understand each other better.

  14. This is huge. Both from the implications of how Brooke’s team and teachers are being willing to try new things rather than sticking to the known, and also from the wealth of information now open to her by the gains in reading comprehension. There are so many wonderful books for Brooke to discover (both informational and fiction) written for the equivalent of late 2nd grade or early 3rd grade. Books that can bridge from where she is to where she is going.

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