Fine. I'll Do it myself.

So, in the fall of 2016, I had my first meeting for the National Center. We had to hit the ground running and we were really starting from scratch. But one of the first things that I was told about was Understood.org. And what a wealth of information it had! Because we didn't have a website for NCIL yet, we often directed people to Understood.

It was around the same time that I really started looking into dyslexia. My husband and I both started the Sally Shaywitz book, Overcoming Dyslexia. I'm not going to link it here, because I think that there are a million things out there now that are free and better than this book. We really wanted this book to tell us what to do. But I think this Amazon reviewer pretty much sums up what the book says (at least the first edition.)

"Not much about how a parent can help a child overcome dyslexia, other than 1. have your kid tested as soon as you think he/she might have a reading problem, the earlier the better. 2. Pay a professional dyslexia tutor to teach your child how to read. 3. Your public school (and some private schools) will screw it up, so don’t rely on them. Actually, that pretty much sums up the book. You’re welcome." - Ash,. Amazon Reviewer.

That being said, the book has been updated recently, so maybe it's more useful now? What this book DID do for us was to solidify the idea that our son had dyslexia...and also that both my husband and I probably also have mild dyslexia. My husband was a very early reader but has struggled with spelling his whole life and his handwriting is horrible (dysgraphia), and I was a struggling early reader. I didn't read for pleasure until I was in high school, and I still have to read every single word of everything. And to understand something, I almost always have to read it out loud several times. And I am SLOW. I probably read at half the rate my husband does. So, things of note that we discovered from the book are:

Children with dyslexia are often misdiagnosed first with a speech disorder. Find a little bit about how dyslexia can affect speech.
Early identification is KEY. We, of course, had already missed that boat.
Find your child someone who knows how to teach reading the right way. Someone trained in direct, systematic, evidence-based instruction. Turns out though, that this was really hard to come by in Eugene, Oregon in 2016.

At school, we had our IEP meeting and there was a different teacher in the SPED Classroom. She had come from the east coast and seemed a lot more knowledgeable than the previous teacher. But she was only part-time and not only at a new school but in a new city and district, so she was struggling to really have enough time to do anything substantive.

I had really turned from the school at this point. I was actively looking for someone to tutor our son outside of school because I didn't think that they could get the job done. But I was having trouble finding anyone who knew what they were doing.

There was a bit of a conflagration of things that happened that fall and winter.

I had called a place online that claimed they could bring kids up to grade level in reading in one year (or something like that) which is a little bit of a red flag. In talking to one of their people, she was adamant that even if I didn't go with them, I MUST find someone who knows Orton-Gillingham (OG). Now, being part of a university research unit that regularly studies and researches reading, I knew that OG was not the end-all-be-all of evidence-based instruction. That is not to say that OG can't be good, or even great when applied by someone with an excellent knowledge base for reading instruction, but OG is more like a philosophy. It's not a program. There are programs that are based on OG, but there is very little evidence to support the "multi-sensory" portion of OG. That was a bit of a tangent, but I was not convinced that OG was the only way to go. I was also concerned that an online tutor wouldn't work for him (This was pre-COVID, so I really didn't think that online was going to work, and I mean, it really didn't, so there you go.).That did not stop me from contacting Barton to see if there were any local tutors (there were not), and Wilson to see if there were any local tutors (there were not). FYI, Barton has no studies that qualify it for review by the What Works Clearinghouse. And Wilson showed some promising effects for beginning readers, but not necessarily for students with learning differences. That being said, my son NOW is doing Wilson with a certified Wilson practitioner who is also an SLP, and he is really making steady gains, so take that for what it's worth.
We had hired a nanny and she was HORRIBLE. It was the first time that I really felt like I couldn't keep someone as a nanny and so, we fired her that winter, and I stumbled upon the Academic Achievement Center which does a STEM program after school. They also happened to have tutoring in reading and math. So, I called them to ask about their reading instruction and had a good conversation with the director. What I learned was that they used Corrective Reading (a program that I recognize! And one that has actual evidence behind it!) Full disclosure here, Corrective Reading is really a fluency program which isn't what most kids need if they have dyslexia. But, our son had been through so many phonics programs we decided that fluency would be a good thing for him to work on. So, we had him placement tested over winter break and started sending both of our kids to this program twice a week and had them in the after-school program run by the YMCA at the school the other 3 days.
I had also talked to a woman who was a tutor at a private Jewish school in Portland. She was also VERY heavy on the OG. But, I was put in touch with this tutor by a sort of friend of the family (my mother and her mother-in-law are good friends...in OHIO!), and her son, a year older than mine, had been diagnosed with dyslexia. What really helped us, was the conversation I had with her about audiobooks. In January of 2017, I introduced our son to Percy Jackson in audio form and he fell in love with listening to books. If you aren't familiar with Percy Jackson he is a young boy who discovers that he is a half-blood: human and Greek God. And that his dyslexia and ADHD are directly related to his powers as a half-blood.
Most importantly, I think, I told my son that he had dyslexia. I told him that there wasn't anything wrong with him, his brain was just wired differently than others and that's why he had so much trouble with reading. It didn't have anything to do with how smart he was. That really gave him some agency at school. He felt like he could tell other students in his group projects that he didn't want to do the reading because of his dyslexia, but that he would work on the other things. I think that this agency, this knowledge about himself, helped reduce his anxiety considerably.

So, here we are. We have moved through the 4th grade and we have been doing tutoring for half the year and his reading scores are going up at school. It's not great...but it's SO much better. His accuracy improved tremendously so even though he was still painfully slow, he was reading almost all of the words correctly.

Here are a few links that you might find useful. Mind you, all of these links are things that I discovered AFTER our IEP meeting for his 4th-grade year.

Fine. I'll Do it myself.

Links: