Ambiguous Loss

I can’t sleep.  Not always; just lately.

It’s 4 am and I’m reading an article titled, “The New Midlife Crisis: Why (and How) It’s Hitting Gen X Women,” on the internet.  It’s not an uplifting piece. This article posits that many women are, “experiencing what psychologists call ambiguous loss. ‘Ambiguous losses are a particular type of loss that lack a definition and lack closure,’ says Kelly Maxwell Haer, PhD, of the Boone Center for the Family at Pepperdine University, in California.” 

The word “ambiguous” is attested in English since the 1520s, and is derived from the Latin ambiguus, “having double meaning, shifting, changeable, doubtful.”  It’s constructed from the Latin ambi-, which lends the sense of “around” plus agere, which has the idea of “drive, lead, act.”  The denotation of “ambiguous” is literally “to wander, go about, go around.” Pauline Boss, a researcher who studied families of soldiers who went missing in action, first used the term “ambiguous loss” in the 1970s.

Ambiguous loss can describe infertility, for example.  You can’t physically lose what you never had, but you can still experience psychological pain over the not having, over your own personal monthly loss cycle. Honestly I didn’t know that was a thing.  Turns out it’s totally a thing.

Ambiguous loss can also describe your feels in the wake of the dissolution of your scholarly community on Facebook.  It can describe the frustration and pain of navigating school as a dyslexic human.  It’s that meandering pathway of pain and loss, with no clear map or center or way forward. 

There is no “if this, then that” when it comes to helping children navigate their dyslexia in schools. Every day is a new series of ambiguous losses.  The physics teacher who refuses to email you the review sheet for the upcoming test because apparently it’s already on Google Drive; he notes that it’s a real bummer that you don’t have access, maybe someone from the district will “get in touch.”  Of course this begs the question that if he uploaded the file to Google Drive he could also just attach that same file to his condescending reply.  The math teacher who insists that despite high anxiety and avoidance on the part of your student, in Montessori education all students must be exposed to all fraction operations at one time, so the child is free to explore their “learning potential.”  Your dyslexic kid that routinely texts you desperate questions about her homework at 11 pm at night because her homework is totally insane and takes her five hours to complete.  The parent who started crying three minutes into your phone call yesterday, who just wants to know when it’s all going to feel easier.

The answer is it’s never going to feel easier, because it’s never going to be easy.  The odds are one hundred percent stacked against you and your different brain.  If you make it that is a small scale miracle.  Of course this is my opinion.  Of course these are not facts.  If you want facts you can head to Google and find some.  I’ll give you a Google-push-on-the-swing-though, and include this fact from the US Department of Education: “60% of America's prison inmates are illiterate and 85% of all juvenile offenders have reading problems.”

Sometimes when it all feels really hard, like now, I fantasize about being a barista.  I imagine how much less daily ambiguous loss I’d experience if I was only responsible for making lattes as opposed to attempting to help children and families across what feels so often like a gaping abyss. 

But the truth is despite the odds I’m actually pretty good at navigating ambiguous loss.  Somehow my kids are learning and thriving despite the very real daily obstacles in their way.  And I would be absolute trash at making those amazing foam creatures on the top of fancy coffee drinks. 

So I guess I’ll just be over here taking Ls and praying for strength. 

Thrive

I have a calendar in my office.  There is a different word for every month, and the word for this month is “thrive.”  I remember how I felt when I hung my calendar up in January.  I felt white-hot rage: something wise warrior women are used to feeling but are asked to hide since forever.  Play nice, says society.  God forbid someone thinks you are mean on Facebook. 

Before the calendar there was a framed certificate.  This certificate was something that I had to work hard to earn.  This certificate was an official stamp of approval from the Barton Reading and Spelling System, proclaiming me a Certified Barton Reading and Spelling System Tutor.  This certificate was designed to reassure parents, children, and myself that I was equipped with A Binder and A Plan and A Scope And Sequence that was Research Based and would Absolutely Teach the Dyslexics How to Read Good and Do Other Things Good Too.    

The word “assure” rolled around in French before arriving in English, but you can still see Latinate bones in its structure.  These fossilized morphemes yield a denotation of “to safety/security.”  As in away from the unknown.  As in avoid discomfort at all costs.  Turns out things are defined by what they are not.

When someone tries to reassure you, please learn from my mistakes and run like hell. 

Two years ago I met a child who changed my life forever.  This child, who I will call Ethan, could not read.  He had repeated Kindergarten.  He was in first grade.  His truly outstanding first grade teacher had already referred him for Special Education Eligibility, which he would go on to qualify for.  Ethan was confused by concepts like “brave spelling” (write down the sounds you hear, children!) and was unable to read.  Math was also hard.  School was beginning to feel like an impossible endeavor.

I met with Ethan for the first time on April 30th, 2015.  I administered a bunch of tests and gathered a bunch of data.  Ethan’s Phonological Awareness, as measured by the CTOPP-2, fell in the 6th percentile.  His Phonological Memory score was 3rd percentile.  Ethan’s Rapid Automatic Naming was very low.  His spelling, as measured by the WIST, was in the 2nd percentile, and his word identification was in the less than first percentile.  Ethan’s Oral Reading Percentile Rank, as measured by the GORT-5 (Gray Oral Reading Test, 5th edition), fell in the 2nd percentile. 

I concluded in my written report that Ethan was 1) super dyslexic and 2) needed an “intensive OG program” in order to be successful.  I never really intended to work with Ethan.  My job at the time was to do assessments and then send families on their way, armed with new, carefully documented information and a hefty resource list.   

However--because I am very fortunate and there are no coincidences--I did begin working with Ethan.  I saw him twice a week for an hour.  I can count on one hand the number of times he’s missed tutoring.  He’s without a doubt one of the most remarkably intelligent, big picture, hard working, and thoughtful children I have ever met.  We started the Barton Reading and Spelling System together and I felt confident.  As one does when one has a Shiny Framed Certificate.

About a year ago I began to feel like Ethan’s progress was beginning to falter.  He struggled to remember all the spelling rules, which were becoming increasingly complex.  He had a hard time remembering and distinguishing between all the different directions one could send the consonant(s) when we divided polysyllabic words.  He was able to read “sight words” but unsure how to spell them, even after I checked and doubled checked that I was following Susan Barton’s Spelling Sight Words Procedure to the letter.  Ethan was able to use the spell checker during our tutoring, but it took him a long time and he often made mistakes.                                                                                                                                                                                                                                                                                                                                                                                                                                           

And to be real with you, as a dyslexic who was/is still a poor speller, I could not find fault with his areas of confusion and struggle.  Even though I had been told by Susan Barton that if I followed her Scope and Sequence I Too Would Become a Better Speller.  Maybe the only people who will become Better Spellers are those who can remember all the rules, which in my opinion range from difficult to remember at best (like the Floss Rule: if a one syllable word with just one short vowel ends in F, L, S or Z double the final F, L, S or Z) to nearly outright impossible to apply, even as an adult (like Picnic Chicken Basket: when you hear /k/ in the middle of a word first try spelling the /k/ sound with a C (don’t use C if there is a watch-out vowel, watch-out vowels are I, E, Y), then try a CK (the ONLY time you can use CK is right after one short vowel), and then finally a K (last choice).  Stop at the first one that works).   If that doesn’t sound hard to you then yay for you.  It’s hard for me and it was hard for Ethan. 

My inner turmoil and cognitive dissonance grew louder and louder.  I asked myself questions like, why is it recommended for a student who has lower working memory to stop the flow of their writing to open the spell checker, remember how to use the spell checker, and then type letters into the spell checker hoping the right word they want pops up?  Why is it recommended to ask your students to wade through an entire Spelling Rules page devoted to SION/TION when they are attempting to spell a word that has the suffix <ion>, and why does Susan Barton call *<tion> and *<sion> units when the <t> or <s> is ALWAYS (not sometimes) part of the previous morpheme and <ion> is a suffix that forms abstract nouns from verbs? 

You do the best you can until you know better, and then you do better.  Luckily for me I stumbled across people who were doing better than Susan Barton when it came to teaching children how our writing system works.  I was suspicious at first, though.  When your thinking is still limited by what’s been given a Gold Stamp of Approval versus what is just the truth things can get tricky.  But here’s the thing about truth: it’s beautiful, it’s elegant, and most of all, it’s meaningful.  Dyslexics have to have that truth and beauty in my opinion.  In my opinion it’s the truth and beauty inherent in structure that enables dyslexics to thrive.

Structured Word Inquiry is a framework for investigating the structure inherent in English Orthography.  It’s not a curriculum.  There is no Scope and Sequence, or as one of my teachers says, Scoop and Sequins.  It does not have a universal Gold Stamp of Approval from the sellers of Dyslexia Remediation Programs and Trainings.  There are four questions: What does the word mean?  How is the word built?  What are the relatives?  What are the graphemes that are spelling phonemes?  There are some leaders in the field who have dedicated their professional lives to helping people like me access real understanding.  And then, best of all, there’s our gorgeous language itself, which continues to defy the boxes we long to put her into.  There’s a historical reason for that <h> in “ghost.”  The word “daughter” makes perfect sense.  The <g> in “sign” spells a zero allophone in that word, but is phonetically realized in other words with the same free base <sign>, like “signal” or “signature” or “design.” 

These eternal structures and precise terminology are not too hard for Ethan.      

Ethan and I stopped using the Barton Reading and Spelling System about a year ago.  It felt a little like leaping off a cliff, to be honest with you.  I was nervous, because even though I was/am/will never stop learning everything I can about how our writing system actually works, leaving behind the Gold Stamp of Approval was a big big deal for me. 

Our time since the cliff jump has been the richest and most meaningful work we’ve done.  He comes to session with words.  He wants to know about words like ancient, could, xylophone, migration, decide, comb, perspiration and vacuum.  It’s not unusual for him to ask me about a word I cannot spell on my own, but again lucky me Ethan’s dear mama always sits in on session and regularly bails me out if this happens.  Or we all look it up together.  No one dies.  It’s okay not to know things.

Turns out perspiration, which is a word we encountered while studying Charlotte’s Web, is: per + spire + ate + ion --> perspiration. The bound base (every word either is a base or has a base) is <spire>, which comes from the Latin word for breathe, blow (yes, totally related to the word spirit).  Perspiration is the skin breathing.  Spelling makes sense.  

A while ago Ethan came into session and asked me about the word “vaccum.”  We discovered that vaccum’s base, <vace>, also surfaces in evacuee, vacant, vacation, and vacancies.  All those words have an idea of emptiness.  Not always a bad thing, emptiness.  You need it in order to take a vacation.   

I proposed the idea of doing Form B of the GORT-5 to Ethan and his mama a couple weeks ago.  We’ll only do it if we decide to as a team, I said.  We don’t need a test to tell us you are a better reader, because we already know you are. 

Ethan was game.  He’s straight up one of the bravest lil warriors I know.

Ethan scored in the 25th percentile for rate, 84th percentile for accuracy, 63rd percentile for fluency, and 95th percentile for comprehension.  His Oral Reading Percentile Rank fell in the 84th percentile, versus two years ago when it was 2nd percentile.  He can read now.  He could not read before and now he can.  If I die today my life meant something, because no one can ever take that from him.

Shout it Out Loud

You know what's totally awesome?  Not being afraid to shout your truth from the rooftops.

Today I testified, along with many other super rad humans from Decoding Dyslexia and other places, in front of the TSPC (Teacher Standards and Practices Committee) in Salem.  

Backstory: in 2015 Oregon passed a law which stipulated that all pre-service teacher training programs (and Special Education and Reading endorsement programs) had to provide mandatory coursework on dyslexia.  Some Oregon universities have pushed back.  This public hearing was called to hear testimony from proponents and opponents of the proposed university guidelines.  Spoiler alert: I am a proponent of this legislation and the proposed university guidelines.  Below is my testimony because I'm not done speaking my truth. 

I graduated from Lewis and Clark College’s M.A.T. program in 2010.  I am currently a licensed early childhood/elementary teacher in the state of Oregon.   I was raised in Oregon and am a proud graduate of Gladstone High School.  I am also dyslexic.

I did not know that my dyslexia was the cause of my almost constant struggle in school until after I graduated with my M.A.T. and began teaching.  I never heard the word “dyslexia” as a child, and I certainly never heard the word “dyslexia” at Lewis and Clark. 

 My M.A.T. program had one course on learning disabilities/special education, and this course consisted almost entirely of overviewing how children are referred for Special Education and the different component parts of an IEP.  My professor consistently reassured us that should we have a child in our classrooms that experienced learning difficulty we should simply “do our best” with that child in his or her general education setting.  I distinctly remember my professor saying that it’s the SPED teachers who have the training that allows them to step in and provide intervention to struggling students.  The general education teacher’s job is just to make sure to follow the proper channels to ensure that those students are referred for possible SPED eligibility. 

We did not have any coursework on how English words can be explicitly taught or why that is of immense value to every learner, not just essential for the dyslexic learner.  Instead our coursework in how to teach reading and writing revolved around how to best construct reading and writing workshops.  One required text in my M.A.T. program, Reading with Meaning: Teaching Comprehension in the Primary Grades by Debbie Miller, stated that in a reading workshop, “the books and materials I’ve [Debbie Miller] chosen are most likely not at the children’s instructional level; whether a child can or cannot read them doesn’t matter. I’ve chosen them because the familiar songs and story lines, the short text, and the colorful illustrations are perfect for children’s working with books, practicing reading behaviors, becoming engaged and motivated, and building community.”

 Another required text from my M.A.T. program, Strategies That Work by Stephanie Harvey & Anne Goudvis, stated the following, “There are no better print materials to use with reluctant readers than picture books. The pictures complement the text to help less proficient readers access meaning….But sometimes reluctant intermediate and middle school readers are more reticent to choose picture books than their proficient reader counterparts.  They believe that reading picture books will further identify them as unsuccessful readers.  We need to promote picture books by reading them out loud, both fiction and nonfiction.  Book choice is contagious.  If we read picture books and share our passion for them, kids will choose them, too.  In classrooms where proficient readers and their teachers choose compelling picture books, reluctant readers climb aboard.”

I also learned in my teacher education program that should a student continue to struggle to read proficiently, we should listen to that student read in order to hear what types of errors (miscues) that student is making.  While listening to a student read is certainly a helpful assessment tool, the required text we were given to teach us this tool, Miscue Analysis Made Easy by Sandra Wilde, contained seriously misleading statements about the English language, such as, “It’s important to realize that an explicit phonics approach posits that learning to read is primarily a matter of learning what sounds go with each letter or combination of letters and then blending them together, while a holistic view suggests that readers who begin with repeated reading of whole texts can eventually abstract out how phonics works without very much conscious awareness of it, or formal instruction.”

We have decades of scientific research that clearly indicates that if you have dyslexia—which approximately 1 in 5 people do—you must have access to explicit, sequential, and multi-sensory instruction in reading in order to become a proficient reader and writer.  We have had this information for over 30 years, and yet many teacher education programs are still teaching pre-service teachers that kids will, basically, learn to read on their own and our job is to keep them engaged with exciting texts.  If they really resist reading, however, try enticing them with a picture book.  Even if they are in middle school.  Even if the shame of not being able to access literacy in middle school in front of their peers is at that very moment creating emotional scars they will carry with them for the rest of their lives.

 My coursework at Lewis and Clark College failed absolutely in preparing me to meet the needs of dyslexic students.  In fact, the coursework at Lewis and Clark pushed me more deeply into the shame that I had carried with me my entire life, the shame of thinking you are broken.  It was not until I graduated and had the good fortune to pursue hundreds of hours of post-graduate study that I realized dyslexia is real and there’s something you can do about it.  

 I am not broken, but our system of educating teachers is.   Let’s fix it together.

You are Allowed to Disagree with the Speaker

I went to a workshop on dyscalculia yesterday. It was called, ”The Neuropsychology of Mathematics: An Introduction to the FAM” by Dr. Steven Feifer.  If you don’t know exactly what dyscalculia means, don’t worry; the general consensus is even experts are not totally sure what it means either. If we look at the Greek we see it most likely means something along the lines of “trouble with calculations” in the same way that dyslexia means “trouble with language.” 

Dr. Feifer was a fantastic presenter.  He was warm, open, engaging and had some very relevant and useful research to share.  Dr. Feifer shared data gathered in 2015 by the NAEP (National Assessment of Educational Progress, which according to their website is the, “largest nationally representative and continuing assessment of what America's students know and can do in various subject areas”).

The 2015 NAEP assessment data showed that fully 60% of 4th graders are below grade level in mathematics.  If you are curious, data showed 67% of 8th graders are below grade level in mathematics.  

From 2013 to 2015 NAEP data shows a “statistically significant” drop in scores overall in mathematics, for both 4th and 8th graders.  It is Dr. Feifer’s opinion that this is not because of the Common Core. 

But as Dr. Feifer said, “you are allowed to disagree with the speaker.”

The first thing that I would like to say, before any of the other things that I am going to say, is that I was genuinely pleased and moved and felt so validated when he said that.  He said it in a mock whisper, at least that’s my memory, in a way where I was instantly like, oh-man-I-bet-this-guy-is-a-great-dad-and-awesome-with-kids. “You are allowed to disagree with the speaker. “  Yes. Thank you, Dr. Feifer.  I am on board with disagreeing with you and that being okay.

So here are some things I disagree with: first, that there were a grand total of two slides entitled “General Dyscalculia Interventions.” Second, all of the following statements presented as said Dyscalculia Interventions.

“Teach students to think in ‘pictures’ and well as ‘words’”  

Okay, yes, agree totally every kiddo has to have their math picture. But you can’t just say, “teach students to think in pictures.” How?  How do you teach someone to think in pictures?  This is a how question, not a “just do.”  It’s nothing short of an art form helping a child establish and sustain their perceptual picture of mathematics that aligns with their unique processing style.  You cannot simply tell a room of educators to teach students to think in pictures without supporting them in what they, as educators, would need to know in order to embark on that endeavor.

“Construct incorrect answers to equations and have students discriminate correct vs. incorrect responses.”

Let me use a language arts analogy here: would we give a reading LD student a book full of some words spelled incorrectly and some spelled correctly, ask him to read the book, and then when he gets stuck on a word ask him if that’s a correct word or an incorrect word?  I think the answer to that question would be no.  Would we expect that a reasonable intervention for spelling would ever include teaching a LD child how to spell by detecting teacher-created misspelled words vs. correctly spelled words? 

“Have students explain their strategies when problem solving to expand problem solving options.” 

I could best see this suggestion as something that might be a helpful accommodation (not intervention) for an individual who benefits from processing verbally.  It has been my clinical experience that only some students with math LD have enough working memory space left to explain what they are doing as they are solving a problem.  Also having a student explain their thinking, even if it does lead to a rich, expansive conversation, is not an intervention.  At least not in my opinion.

“Teach estimation skills to allow for effective previewing of response.”

I think it’s totally on point to teach estimation skills.  It has been my experience also that dyslexics are great at estimating, which makes a lot of sense since estimating is a task us right hemisphere dominant people often excel at.  However, we need to be so careful not to mix exact math (left hemisphere dominant), where there is no room for even the slightest variation in answer, and approximate math, where there is room for variation/interpretation/wiggle room.  It is a mistake absolutely to encourage kids to do both at the same time, especially as an intervention for math LD.

“Freedom from anxiety in class setting.  Allow extra time for assignments and eliminate fluency drills.”

Here we have a heartfelt wish for math LD kids and two accommodations, not interventions for dyscalculia.

“Teach skip counting to learn multiplication facts.”

As my teacher often says, the multiplication and division facts are the biggest development in all of elementary mathematics.  A math fact is something that you know so well you are able to retrieve it instantly, or almost instantly, depending on your unique processing.  It is the opposite of counting, which is not developing fact retrieval but rather developing counting.  Also good luck skip counting by 7s.

“Use graph paper to line up equations.”

This is an accommodation, not an intervention for dyscalculia.

It’s nice to have a corner of the internet where you can disagree.  It’s even nicer to know that when you are your own boss and live in America you can basically just be honest all the time.  I don’t need to tow the party line for a school, or various publishing companies.  The only people I answer to are every single one of my amazing families who already see the value in the work we do together. Together we keep fighting the good fight, and celebrate our collective permission to disagree with the speaker.

Always Late

It has always been my experience that I am late for things.  It is so often that we make tardiness into a moral failing in our American culture, so please hear me out on this one.

The reality is that I experience time differently than neuro-typical people.  This is common among dyslexic individuals.  I find time slippery and hard to manage, especially when I’m trying to plan around something new or unexpected in my routine.  Going to a job interview, for example.  Or starting your first day of work at a new job.  You have the very best intentions.  You arrive late.  You always forget you will probably miss the turn at least three times.  Thank God for GPS except when it lies to you, or tells you the exact truth but expects you to cross three lanes of traffic rightthissecond in order to obey the command to turn left.

My experience is that creative thinking does not follow the rules of linear time.  I will have been mulling something over for awhile, just letting an idea or problem stay liquid in my mind, and then bam: a super great thought rises to the surface right then, at that exact moment you also look at the clock realize it’s the same time that you promised to be out the door.   You are then simultaneously filled with the joy of sparkly creative feelings and the stomach dropping anxiety feelings.

I have lived my entire life with anxiety as my constant companion.  There is nothing worse than feeling like you did everything within your power to be good (set my alarm for an hour early, calculated the route the night before, packed my lunch) and yet still fall into the category of bad (um, you know you were supposed to be here at 9, right? Did you get lost?).  Sorry.  I’m sorry.  I’m just bad.  I know I’m bad.  I knew I was bad in 1st grade when the teacher was like, “OMG you are not normal” and here I am, years later, still withering under your sighs and waves of silent shaming disapproval. 

I know being on time is important.  I’m not arguing that we don’t need the structure that linear time provides.  But I beg of you to consider this: if you are a person in the world who is bothered by the tardiness of others, perhaps consider that humans have infinitely diverse processing styles, and that if someone is late it’s probably not because they are terrible.  And that it’s perhaps not useful—or really even arguably legal—to document how often a dyslexic kiddo with a dyslexic mama is tardy to school under his Present Levels of Academic Performance on his IEP.  It’s wrong to imply that being five to ten minutes late to school, even on a regular basis, somehow translates into the fact this child has a right to a free and appropriate public education and that it’s the system NOT THE CHILD that has failed spectacularly.

What if we strove to be on time but forgave one another and ourselves for tardiness?  What if we gave each other permission to just not feel bad?  What if we took someone’s hands, looked them in the eye, and said, “I am never going to be mad at you, disappointed in you, or think that you are bad if you are late.  Your processing style means that you have a different experience of time than other people.”  And you know what?  You’re still awesome.

Thoreau & ReadSpeaker

Listen

"In any weather, at any hour of the day or night, I have been anxious to improve the nick of time, and notch it on my stick too; to stand on the meeting of two eternities, the past and future, which is precisely the present moment; to toe that line.  You will pardon some obscurities, for there are more secrets in my trade than in most men's, and yet not voluntarily kept, but inseparable from its very nature.  I would gladly tell all that I know about it, and never paint "No Admittance" on my gate."

--from Walden or Life in the Woods, by Henry David Thoreau

I studied English in college, which may seem like a super weird choice for a dyslexic, but trust me reading is way easier when there is a story to follow.  In college I discovered that you could get credit in class for talking; this was called "class discussion."  Luckily for me it was a cornerstone of my liberal arts education.  

In celebration of learning with your ears, you might notice that my website is now speech enabled.  I owe this good fortune to ReadSpeaker and Mattias, who answered my telephone call to ReadSpeaker Support in Uppsala, Sweden, 9:45 pm local time (they shut at 10:00 pm) two days ago.  Mattias emailed me code that I injected into my website to make the magic button appear.  I rather like the ReadSpeaker voice; he sounds like a dapper fellow.

Back to Thoreau. This line has always struck me, even more so since becoming a teacher:

 "You will pardon some obscurities, for there are more secrets in my trade than in most men's, and yet not voluntarily kept, but inseparable from its very nature.  I would gladly tell all that I know about it, and never paint "No Admittance" on my gate."

I hope you all have a very happy weekend.