Legislation and All That Jazz

 Absence

So, It's been a while since I wrote anything for this blog. For several months there I was very busy. I joined Stand For Children as an advocate for the new literacy bill that was being written, I was writing things to the legislature to get the literacy bill passed, and we did. 

What I Wrote

The First One

I wrote and shared this in several meetings with legislators in the ramp-up to the bill going to the Education Committee. And I submitted it as testimony. I intended to speak at the first hearing, but they decided not to have public comment. 

Hello, thank you for your time.

My name is Anna Ingram and I am a Eugene 4J parent, but I am also part of the dissemination team for the National Center on Improving Literacy at the U of O.

My son’s reading disability story is long, but I’ll try to be brief. 

I was concerned about my son’s reading instruction starting in Kindergarten because his teacher told us that the class would study letters as they came up organically. 

When he was struggling in first grade his teacher gave me a list of 200 common words that she wanted him to memorize. I knew this wasn’t how kids learn to read, but we tried it anyway. The school did NOT provide him with extra help. They told us that he would catch up, he was fine, and one day it would just click. 

When I told his second-grade teacher that I was concerned about his reading, she said he was doing fine and would catch up. Since the school wasn’t concerned we decided to have him assessed privately for a disability. 

My son was diagnosed with suspected dyslexia. He started the 3rd grade reading 18 words a minute with 80 being the goal. He didn’t understand that you write letters from left to right on the same line to form words. He was in the THIRD grade. Recommended tips for reading unknown words? look at the picture, guess from the first letter, or figure it out based on context. These practices are known to confuse kids and make learning to read harder.  Actually sounding out the letters in the word was not recommended.

We finally got IEP Services but he still did not receive evidence-based instruction. He's learned to read because I shell out thousands of dollars a year to have him tutored with explicit, systematic instruction. 

I’ve worked with reading researchers at the U of O for almost 20 years. I KNOW what good instruction looks like but I couldn’t get my son the support he needed. What happens to families who can’t pay for private evaluations or tutors or who don’t have time to advocate - because it’s nearly a full-time job? 

This is a question of equity. Students with invisible disabilities should be part of the equity conversation.

There has to be systematic statewide change because my son’s story is NOT unique.

While I don’t believe that this bill will fix all of our problems, It is a place to start. It has many of the pieces that have been successful in other states. We need to pass this bill and make sure districts are on board so we can give all kids the chance that my son never had.

The Second One

After they wrote some amendments to the bill, they did end up having public comment and I signed up to do that. The committee went way over time and cut all public comments down to 1 minute. I did the best I could in the moment but did become emotional. You can watch it or read it.

My name is Anna Ingram. Thank you for allowing me to speak today. I am the parent of a child with a reading disability, but I have also worked with reading researchers from the UofO for nearly 20 years.

 

I support this bill because I believe all children have the right to learn to read. For most children, that means explicit, systematic, instruction. 

 

It took 2 full years of complete reading failure and an evaluation for reading disabilities to get my son help at school. He received so little instruction in kindergarten that we didn’t know he was a struggling reader until first grade. And yet, with a poor curriculum and lack of evidence-based instruction, my son continued to fail while getting no support at school. 

 

My son was diagnosed with suspected dyslexia and anxiety related to reading the summer before 3rd grade, but it took the first 3 months of that year to get him any services. I thought that once he was identified with a disability that everything would get better. It did not.

 

I try very hard not to think about the what if’s in my son’s life. What if I had pushed harder to get help sooner? What if he had received evidence-based instruction? Mostly I ask why he wasn’t given that chance to succeed in the earliest grades. 

 

He has a reading disability, but he is also a curriculum casualty of our faulty system. 

The legacy of poor reading curriculums and instruction for my son are

• The years it took to reduce his fear and trauma about reading.

• The years of lost electives so he can have a class for extended work time.

• The accommodations in his IEP that are rarely met.

• The thousands of dollars and time spent on tutoring in explicit, systematic reading instruction for the last 8 years.

• And the extra time and effort he has to put into reading and writing compared to his peers.

My family has the time and resources to help my son succeed, But there are so many families who can’t pay for private evaluations or tutors, and who don’t have the time to advocate. There has to be systematic statewide change because my son’s story is NOT unique.

This bill is a first step to giving kids the chance that my son never had.

And Then

In addition to all that, I was also attending meetings with 4j leadership. As part of that, I asked my son some questions about his experiences. This is what he wanted to say:

Is It Dyslexia? Does It Matter What I Call It?

 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). 

Opportunity to Help Your Child This Summer!

 This looks like a fantastic opportunity. If you have a little one at home and you need some guidance, check out this article: 

Education Researcher Creates Free Summer Reading Program for Parents

And then check out the website to sign up for Read Not Guess

This will help you help your child learn the appropriate way to read. It will help them either unlearn or mitigate the habit of guessing that is often taught in schools. 

If your child has been taught to guess based on pictures or the first letter of a word, you should definitly sign up for this program to get your child on the right path to actually learn how to read. 

 

Helping Your Child With Reading At Home

 So, I have a couple of opinions on this, so I'm just going to bullet a list and then I'll explain.

It totally depends on

• Their age.
• How your child reacts when you try to help them.
• How far behind they are.
• How motivated they are.
• How knowledgeable you are.
• How much time you have to devote to this.

Their Age

If your child is still young (pre-k to grade 1), there are a ton of activities you can do to help with reading. First and foremost? Read to him. Read together. Read picture books, and chapter books, and listen to novels together. Talk about the things that you are reading. If they don't understand one of the words, or if there is a difficult concept, stop reading and talk about it. 

Here is an article and video about Dialogic Reading. This is a great way to engage your child.

Here are a couple of Toolkits that have a wealth of information for early reading and supporting your child at home.

Supporting Students with Reading Needs

Supporting Your Child's Literacy Development 

The Florida Center for Reading Research (FCRR) has Student Center Activities that are broken out by grade level and skill. They even have a video series of how to do some of the activities with your kids at home. These are scripted and easy-to-follow lessons that are short, fun, and based on science.

There is also this resource from the Feds that is supposed to be easy to follow for Supporting Your Child's Reading At Home

How Your Child Reacts

When our son was young, I could help him, but as he got older and struggled even more he became very frustrated with me. In fairness to him though, I wasn't doing all the right things. I was maybe starting with things that were not the problem - like fluency. Fluency wasn't his problem. He was still struggling with connecting sounds to written letters.

So, if you have the money, my advice is to find a tutor. Someone who uses evidence-based practices and a good program. You can find information about local tutoring on the Local Resources Page. But in addition to that, look into Wilson Reading. You can ask them for a list of certified tutors in your state. Check the International Dyslexia Association for tutors. And, definitely consider the possibility of online tutoring. I wouldn't have considered it before COVID, but I think that people have really streamlined their practice and made it okay to do online instruction. 

How Far Behind They Are

If your child is older and they are really struggling (like my son who was reading at a first grade level in third grade), try to get a tutor.

Barring that, because the cost is often a barrier - Tutoring is NOT cheap. Go back to the things under the first section here. Look at Florida Center for Reading Research and the IES-funded things that give you some systematic instructional practices.

How Motivated They Are

My son lacks serious motivation, so I mostly have to do the heavy lifting to get him the instruction he needs. If the motivation struggle is REAL in your house, try audiobooks! Audiobooks at least help develop vocabulary and cultivate that love of books that everyone likes to talk about. Maybe start with the Percy Jackson series. Did you know that Percy Jackson, the character, has dyslexia and ADHD? THAT is relatable!

Access Hoopla Digital and Overdrive which are free with your library card and have tons of audiobooks and ebooks. 

How Knowledgeable You Are

Don't try to do more than you can. If you are not a teacher and you are overwhelmed by all the things that I'm talking about here, just read. Just, find a book and read it together. If you read all of it, that's fine, but read it out loud and talk about it together. This is a really wonderful way to encourage reading for understanding and seriously - every little bit helps. So, do what you can.

How Much Time You Have To Devote To This

Some days - read, most days - I'm exhausted from working and then I have to come home and make dinner, maybe I have to take someone to football practice, or to sword class. Some days I just don't have enough in me to deal with anything else. If your child is really struggling with reading, that can be a full-time job. But even just 5 minutes a night doing one of the FCRR activities or reading together, or listening to a book, these are all things that can contribute to better learning.

Stay strong out there...it's a jungle.

What If My Child Is Struggling With Reading in Kindergarten or First Grade?

 First - Is this just something that you have observed? Or has the teacher expressed concern as well?

If the teacher hasn't expressed concern, start by asking the teacher about your child's reading and tell her that you are concerned. Need some questions to ask?

Try these infographics for good questions to ask:

Route to Reading: Check for Potholes

Route to Reading: Do Regular Performance Checks 

If you are given things to do at home that don't seem to be right or that are not working for you, try this infographic:

Route to Reading: Avoid a Lemon

Or watch this video:

If your concern runs deeper than just thinking your child is struggling and you want the school to test your child, you will need to Request an Evaluation. You have to use that terminology and you have to do it in writing. 

Sidebar: I think that all coorespondance with the school should be in writing. It's the only way to track that things are happening (or not happening).

Here is a great little article from Understood.org that breaks down how to request a School Evaluation 

6 Steps for Requesting a School Evaluation

You know your child best. If you think something is wrong, there probably is. Maybe it's a learning disability, maybe it is the instruction that your child is receiving, but either way, it's important to act fast. Children who receive systematic evidence-based instruction and interventions in the earliest grades are less likely to fail or fall behind later (3rd or 4th grade) when teachers expect them to read to learn rather than learn to read.