Okay, maybe that's a little extreme, but I didn't set out to do any of this. I mean, I graduated with a Creative Writing degree. It wasn't until I was a senior at West Virginia that I realized I should have done something a little more marketable - like marketing! I'm also a product of my generation, right? If the internet and website development had been a thing when I was in high school, my whole trajectory may have been different.
But it turns out that what I really wanted was balance (not balanced literacy, ACTUAL balance). I wanted to have a job that was just a job, make enough money to be comfortable, and be able to leave the job on Friday and not think about it for the weekend. It turns out that office jobs are sort of right up my alley. I worked in a job that I didn't really like for a number of years, but I enjoyed my coworkers so it was bearable. I was downsized in 2003 and I took the Oregon Reading First job because
I wanted some stability (I knew there was funding for at least 5 years), and
I had been planning my wedding and discovered that I had a bit of a knack for event planning.
I didn't know ANYTHING about reading, teaching reading, or reading research. I was just looking for a job.
Fortunately or unfortunately, my job wasn't the kind of thing that you left at the office. I traveled, I got calls after hours, and I worked lots of overtime. But as the years passed, I became invested. I listened to what the researchers and coaches were saying, I started to understand the data that they were looking at and I appreciated the passion that everyone had for helping kids learn to read.
Then, I moved on to the Reading Clinic where I spent a lot of time talking to parents - Parents who didn't know how to help their kids, parents who were desperate for help, and parents who needed a sympathetic ear. And as the years progressed and I spent more and more time reading reports and talking to our tutors and our grad students, I became more knowledgeable and more invested.
And then suddenly I was the one who didn't know how to help my son, I was a desperate parent, and I needed a sympathetic ear.
Why Am I Even Talking About This?
Because those of us who have been in the fight for years are battle weary. We're cynical and maybe just a little bitter. Some days the rage keeps us going. Some days, we feel righteous power...and some days we don't.
All I'm saying here is that sometimes we don't ask to be in the position we are in. And some days that position is more difficult than others.
This past week I found myself really feeling pulled in too many directions and it turns out that a lot of self-doubt crops up when I get pulled in too many directions...and maybe I just want to go watch my son play some basketball and have a little party and not think about the state of literacy in our country for a minute. We all have to take some time to recharge occasionally.
Advocacy is downright draining especially when there are emotions involved.😊
Not to worry, I'm already back at it. I am STILL an #accidentalliteracyadvocate
Editor Note: I started this back in December but never finished, so I'm finishing it now.
I'm Exhausted.
I know that I'm not alone and that my son has people who care about him and want him to do well, but it is really f-ing exhausting to keep hitting my head against the same wall. I've emailed my son's SPED teacher at least once a week asking questions, requesting help, and suggesting what needs to happen and I just don't understand why everything takes so much time!
You know what else I don't understand? This feeling that he needs to stand on his own two feet immediately. Like, why isn't he just advocating for himself? Well, gee, I don't know, maybe it's because he keeps hearing about "fairness" as in - it wouldn't be fair if you took the test in another room or for a second time, even though that's in his IEP. Maybe it's because he had a teacher in the 8th grade who told him that IEPs shouldn't be a thing and that he was just asking for special treatment.
Sidebar: I don't actually know what was said in that 8th-grade meeting with his teacher, I just know that he went in and advocated for himself and he came out screaming that he would never speak to that man again. The information about special treatment is what we were able to pull out of him.
Everyone is talking about the pandemic and the learning loss and the social-emotional impact on all students, so why are they not treating him like he's had learning loss and social-emotional impact from the pandemic? He isn't advocating for himself. Don't just say, you should advocate for yourself 16 year old who basically didn't have an 8th-grade year! Maybe start by reaching out to him. Build a relationship so he can have some trust in you! Say, "We want to teach you how to advocate for yourself. Here are some tools, and we will try to do this in a systematic way so that it's easier for you." Here is how to write an f-ing email!! Yeah, that's right, my kid will not read or write emails, so will someone at school please teach him some tools to do that?! Because me telling him and offering help is not WORKING!
In case you can't tell, December was HARD y'all. My son got a D+ in history (which he loves! He loves history! I'm not so sure about this particular class, but he does love history.) He got that D because he didn't complete a huge assignment in time and it was locked. He was told he could email it to the teacher before the term was over. So, he recorded an audio file with his thoughts on the assignment (which he has been allowed to do, but it hasn't really been defined specifically), but he had trouble attaching it to the email and then he tried linking it and whatever, the permissions were off and she couldn't listen to it. But she didn't let him know that until AFTER the term was over. She sent him a Google notification that she needed access after the last day of the term - but as I stated above with multiple exclamation points - HE DOESN'T READ HIS EMAIL!! So, she just didn't grade the assignment and gave him a D+. Now, I didn't figure this out until like 5 days later. Did she email me to tell me that this happened? Did she contact the SPED case manager to ask about this? Did she even mention this to my son when she saw him at the start of the new term? No...that would be a hard NO.
Fast Forward to this week, post break. We had an IEP meeting that felt, if not productive, at least validating. And we dropped Spanish and picked up American Sign Langauge (which they did in 1 day!). This is a load off our minds because I think Spanish was going to be a very heavy lift. So, that's where we are. We're still fighting, we're still working toward the teachers bridging that gap for him. Reaching out to him first so he maybe feels like someone cares.
Circling back to the title of this post - I'm with you, SPED Moms (and dads too, but in my experience, the dads don't feel it quite so viscerally), I'm here in solidarity with all of you. This is hard stuff. Lack of staff and lack of understanding in schools doesn't help. So - keep on keepin' on and know that you are not alone. 💪
So, I'm moving this blog to a website to make it a bit more dynamic and also more user-friendly.
This blog will still be up and running, but the web addresses will change slightly. Going to dyslexiaeugene.com will still get you to the right place, it just won't be THIS place.
I'm going to make the leap in a few days so hopefully, it goes smoothly!
If you haven't heard of Emily Hanford then you haven't been around the reading instruction/dyslexia world long enough. Emily Hanford is one of the reasons that the Science of Reading is such a big conversation right now. And...she's a fabulous journalist and weaver of stories. Not fictional stories, but the real horrifying truths about reading in the US.
You may have seen on my Educate Yourself page, the link to APM Reports. Originally, that was a link to the series Hard To Read and now it is also a link to Sold a Story. In fact, you can listen to a whole series of stories by Emily Hanford that will be enlightening, disturbing, and anger-inducing - whatever your emotion is, it will be provoked by these stories.
A connection
You know, I started work at the University of Oregon in February 2004. My then-fiancé was still overseas and I was deep into planning my wedding. My first day on the job? An Institute on Beginning Reading (IBR) that was being held at a Jantzen Beach hotel in Portland. It was the first of several IBRs that I would attend over the next few years because I was the event planner for the Oregon Reading First Center (ORFC) and the Western Regional Reading First Technical Assistance Center (WRRFTAC).
If you've been following Sold a Story, you may know where this is going.
I was 28 years old. I had a bachelor's degree in creative writing. I was about to get married. I was planning to start a family (as soon as my soon-to-be husband was out of the National Guard). And I knew absolutely NOTHING about teaching reading, how kids learned to read, or that there were different camps of belief in how to go about that teaching. It would be much later that I would connect my own slow, laborious reading with dyslexia.
It turned out that I didn't need to know any of those things to do my job. But as it happened, my job was really pretty much done once people were settled in their seats and listening to presenters. That meant I could sit down and listen if I wanted to as well. And I absorbed information as the years passed - listening to people like Anita Archer and Jan Hasbrouk talk about good instruction and assessment.
Sidebar: if you haven't ever heard Anita Archer speak, I encourage you to find some of her presentations online. She's wonderful. Here's a quick video that you can watch.
A shift, but still in the reading world
As Reading First (RF) started to implode nationally, I was on to thinking about having another baby, our first being born in 2006. The funding for RF was going to end and I was going to have to find another position. But, because I knew I was planning to get pregnant again, I didn't think I wanted to change departments. The director of ORFC was also changing positions. She was starting a little free reading clinic right there in our department and she needed an assistant. She told me that the job was mine. That it would not be challenging and I might even find it boring, but I could keep my .8 FTE Schedule. Since the first task was to build a website for the new clinic, I decided I was in.
So there I was, in 2008, helping to start a reading clinic that provided reading instruction one-on-one to students in Kindergarten through 5th grade. We did a soft launch with flyers in schools. We had more than 100 kids on our waitlist before we even got started. I think we started by serving 16 kids...I can't remember, but once we got going, we served 30 kids every term.
Originally the idea for this clinic was to bring kids up to grade level and send them on their way. We discovered in that first year that proving good instruction for 45 minutes a day, twice a week wasn't going to do it and we continued to have a growing waitlist even though we didn't advertise. So, we put a cap on it and served kids for up to 5 terms.
Maybe this should have been a glaring red flag to me that reading instruction was broken in our area, but remember, my only experiences with reading instruction was LITERALLY with the people who wrote the Direct Instruction programs that are talked about in Sold a Story.
I said nothing
By the time my oldest son was in kindergarten, I had a pretty good grasp on what good reading instruction looked like. He participated in the summer kindergarten readiness camp that our Reading Clinic put on and he was in one of the highest groups for the pre-k kiddos. Now I know that he was just really good at sounds in isolation, but that word level reading is very difficult for him.
So, when I went to curriculum night at his elementary school and the kinder teacher said, "I have a reading curriculum, but I don't use it. We learn letters organically." I was VERY suspect, but I remember looking around the room and watching all these moms just nod their heads and I was like...oooookaaaaayyyy? So, I said nothing. I continued to say nothing as my son spent kindergarten making belts and stitching bags. I think his sole reading experience in K was story time. At home, we read CONSTANTLY. He loved dinosaurs and lizards, alligators, snakes, and crocodiles. We would read him literal textbooks about lizards in the Northwest. But as kindergarten was coming to a close, we decided that we probably needed to do some reading instruction at home.
By this time, the reading clinic had shifted. We were hemoraging money because we were a free clinic, so as our funding dried up, so did our options. We moved the clinic out to the Bethel School District. Bethel supported this by providing food for the kids who stayed after school and bussing them home when tutoring was over. But what this meant for me, was that my son didn't have access to our wonderful Reading Clinic.
So, we did Teach Your Child To Read in 100 Easy Lessons which was recommended to me by my boss. And, because we understood the score at this point, we also did this with our 4 year old who was interested in anything that his brother got to do.
I had visions of a miraculous change in understanding how to read. Like some lightbulb would go off in his head, which is what they say in school you know, but obviously that didn't happen. This really brings us up to the rest of this story, which you can find in the Our Story section of this website.
In the trenches since the beginning
What I'm getting at, in my very longwinded way, is that I've LITERALLY been in the Reading Wars almost since they STARTED! And I didn't even start out with a kid who had dyslexia!
A funny little anicdote - several years ago as part of the National Center on Improving Litearcy, we went to Washington DC and had a Dyslexia Techncial Work Group gathering with some very big names in dyselxia and reading instruction (Jack Fletcher, Nadine Gaab, John Gabrieli to name-drop a few) and on the first day, I can't remember what the group was talking about but I expressed my opinion using my own experience with my son. Later, Dr. Gabrieli and I were chatting and he asked if I sought out the National Center or if it was just serendipitous that I happened to end up working to help give students better access to appropriate reading instruction. I told him it was a complete accident. #acidentalliteracyadvocate.
So, it turns out that it's REALLY hard to find a good Language Arts curriculum. The textbook publishing industry is a juggernaut and is bloated with cash and the want of more. In turn, they bloat their products with gimmicky things: lots of colors, pictures, manipulatives, puppets, and hopefully some decodable books somewhere in the mix.
Also, all programs are not created equal. It's important to check the evidence behind a program - but that is also difficult. There are a couple of websites out there that will give you decent information about curriculum, but many of them are difficult to navigate or the information is given without much context. Personally, I think that EdReports is the easiest to follow and understand - here is the Wit & Wisdom Entry - but to be fair, I don't actually know what the EdReports criteria is for reviewing things. Many programs don't even show up on the other websites (What Works Clearinghouse, NCII, Evidence for ESSA) because the criteria for review wasn't met. That means that the research wasn't done in such a way that it qualified for review. Also, I feel like EdReports provides opinions based on the research which is not what you'll find on those other websites. If you want to do your OWN research into curriculum, you can check out The Reading League's Curriculum Evaluation Tool.
All that, which sort of took me into the weeds a bit, is to say that you can have the BEST curriculum out there. Maybe it follows an amazing scope and sequence and the evidence is that kids learn to read at a greater rate than kids who are not getting what we will call Magical Program.
And here's your caveat...
But if you still have teachers who are telling kids to guess a word by looking at a picture, or to figure out the word from context, or to see if it "sounds right," then all the evidence in the world is not going to make that program work.
Evidence is only as good as the fidelity with which the program is implemented.
I cannot stress enough how important it is for teachers to STOP TELLING KIDS TO GUESS WORDS BASED ON PICTURES! It is harmful to EVERYONE, even the kids who do learn to read without proper instruction! Those kids who learn to read without proper instruction? Many of them will develop problems later - when they no longer have pictures and the words are more complex.
I'm cautiously optimistic about the implementation of Wit & Wisdom in our school district. It's a pretty good program and it does have a scope and sequence. It also builds upon prior knowledge which is very important.
What am I worried about with the implementation of the new Wit & Wisdom?
Off the top of my head:
Will there be continued coaching for teachers who are using the program?
Is the professional development deep enough and are teachers engaging in that professional development?
Will the district actually implement an MTSS-R system so that there is a process for what to do when a student IS NOT making progress?
Even Magical Program will not work for all students at the same rate. Students with dyslexia and other reading struggles will still require more intensive instruction.
Will schools continue to implement the program with fidelity through the upper grades? Ideally, putting a good Tier 1 program in place should stem the flow of kids into Tier 2 and Tier 3, but if you stop teaching reading after 2nd or 3rd grade because you've arbitrarily decided that that's when kids switch from learning to read to reading to learn, you're going to be right back where you started.
What about the kids we've already failed? What about my son who is still struggling with reading in high school and who NEVER learned to write well (dyselxia also impacts writing and organizing thoughts around writing). Are we going to implement anything for them?
I fear the answer to that last question is no. There is no time for my son to get all his credits in high school and take a remedial course in reading or writing. So I will continue to pay a tutor to help him with reading. I may have to find someone to help with his writing - but since I was a creative writing major and it's kind of my jam, I think I can help for the time being. But this assumes that he will actually let me help him.
I hate to end on a low note, but facts are facts. I am going to drop a few resources here to help with some understanding:
Not sure what I'm talking about when I discussed Tiers of Support? Check out this graphic (designed by the lovely people at the Lead for Literacy Center (L4L) and then polished into a graphic by yours truly (I am part of the Lead for Literacy dissemination team). You can read the brief that goes with the graphic too. L4L has a ton of really great resources for school, district, and state level leadership - because everyone from top to bottom should understand what good reading instruction looks like.
Lastly, the new NCIL Supporting Students with Dyslexia Toolkit. This houses Understanding Dyslexia as well as 4 brand new Toolkits and Tutorials. And here's a tip
Whispering: reading instruction for students with or at risk for dyslexia is good for ALL students. So, even though these things say "Dyslexia" everywhere, this information is really good information for all teachers and parents.
NO! It doesn't matter what you call it! But also, it totally does.
First, it's #DyselxiaAwarenessMonth so I'm not sure if this post is well-timed or ill-timed, but here it goes!
It turns out that nearly ALL kids can learn to read if you provide them with appropriate, evidence-based, systematic, cumulative instruction. It should include instruction in all the big ideas of beginning reading - phonemic awareness, phonics, fluency, vocabulary, and comprehension.
For some kids, this process will take little time. They will get it after just a little practice. But MOST kids - not just kids with dyslexia or a reading disability - need systematic instruction in the 5 big ideas.
Sidebar: I love this video from my friend Jess Surles. She can tell you better than I can, what effective instruction looks like:
All kids are going to learn to read at a different rate. Like I said above, some will pick it up like it's nothing and that's great, but not everyone can do that (in fact, MOST people can't). But what we DO know is that systematic, cumulative, instruction (that hopefully has an evidence base) is the best way (that we know of right now) to teach MOST kids to read (like, virtually anyone). Sorry for all the parenthetical phrases there, but I wanted to make sure that I was qualifying things - because it turns out that science is ever evolving and we should change practice as new evidence comes to light.
So, call it what you want - dyslexia, a specific learning disability in reading, struggling reader - if we were providing the appropriate instruction to all kids, the labels wouldn't matter so much.
I also think that some people find the word dyslexia to be a little scary. It's scary to think that your child has a disability and maybe it's easier to just use the term struggling reader.
So, all that being said, why do I believe that it's also totally important to use the word dyslexia?
Because when I told my son that the reason he couldn't read was that he had something called dyslexia which just meant that his brain was wired differently and it made connecting sounds to letters and words in print difficult, he was so relieved. He was relieved because he had spent years feeling like he was stupid; like he was incapable of doing this thing that all these other kids could do. Adults made him feel like he was supposed to be able to do this thing and instead of helping, they paired him with other students who couldn't read and told them to "read together" which of course, they couldn't do.
So suddenly he had confidence in himself. He felt like he could say, I have dyslexia. It's a brain difference that makes it hard for me to read. And you know, for the most part, people just accept that.
So, do we need to call it dyslexia? We shouldn't have to. We shouldn't have to pay a neuropsychologist to give us a diagnosis of dyslexia to get help for our kids. It's cost prohibitive for most people. And we shouldn't have to be in a situation where our kids have to have a word to apply to themselves because they haven't been taught to read. But...here we are. So, the answer is YES. It is so important that we #saydyslexia that we screen for dyslexia and that we provide intensive evidence-based instruction for kids who have dyslexia (but also any other reading struggle).
Did you know that October is Dyslexia Awareness Month? For those of us who see the struggles of our children, dyslexia awareness is every day, but it's always good to try and bring attention to this disability that affects around 15% of the population.
