What to do after dyslexia diagnosis?

A man and a young child read a Mother Goose picture book in front of a shelf of books.

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If you’ve just learned that your child has dyslexia, or you are in the middle of an evaluation, you likely have many questions. Once you start following experts in the field and chatting with parents, your “to do” list, along with your “to read” and “to buy” will fill up quickly. Here are my recommendations for families who are wondering what to do after dyslexia diagnosis and are beginning their journey into dyslexia.

Learning that your child has dyslexia can be a time of intense emotions for you, your partner, your child, and other children in the family. You might feel overwhelmed by all the information, relieved to have an answer, guilty for not seeing the problem sooner, or something totally different from these. For many people, dyslexia isn’t even something on their radar until a child struggles with reading and writing. 

Some people like to gather all the information they can and they hit Google hard, bookmarking and highlighting and printing everything that seems useful. Others might feel like they are slowly drowning in reports and recommendations and just hope that some expert will throw them a life preserver. It’s important not to lose sight of your real goal: helping your child with dyslexia be confident, skilled, happy and successful. 

Tools for you, Supports for your child

Educate yourself

One of the first steps a parent should take when their child is diagnosed with dyslexia is to educate themselves about the condition. There are many widespread misconceptions about dyslexia, like that it’s an “old-fashioned” term we don’t use anymore, or that people with dyslexia physically see letters and numbers backwards. We have learned a lot about the brain and about dyslexia in the last several decades and there are many good sources of information. 

  • Join your local Decoding Dyslexia chapter – these groups are made up of parents, educators, and educational advocates. They are great sources of more local information about state education laws and local resources. My state’s Decoding Dyslexia Facebook group is very active and just by reading along I have learned so much about how the state and local school districts respond to dyslexia.
  • Find your local SEPAC – many school districts have a Special Education Parent Advisory Committee, a group made up of district parents that communicates with the school board or school committee about the needs of special education students. In some districts, the SEPAC also sponsors educational speakers or events that are relevant to needs of their students. 
  • Check out the International Dyslexia Association’s fact sheets – The IDA puts out lots of informative fact sheets, for parents and teachers, about a wide range of topics that impact people with dyslexia. 
  • Get some books. There are so very many good books you could read about dyslexia, education, parenting, and literacy. (Keep in mind, these may be available as audiobooks through your public library or through Audible.) Here are my recommended starting points:
    • For inspiration: Reversed by Lois Letchford is a memoir about how Ms Letchford taught her severely dyslexic son to read and write when the schools could not.
    • For the scientific basics: Overcoming Dyslexia by Dr. Sally Shaywitz. Dr Shaywitz is the co-director and co-founder of the Yale Center for Dyslexia and has an incredible wealth of knowledge about both scientific and practical aspects of dyslexia.
    • For the non-academic challenges: It’s So Much Work to Be Your Friend by Richard Lavoie. Dyslexia can impact so much more than a child’s reading and spelling. It can also impact the way they communicate and process information, socially as well as in the classroom. Rich Lavoie has advocated for the social and emotional needs of kids with learning differences for decades and his workshop F.A.T. City is an eye-opening window into how it feels to be different in school.

Services for dyslexia

You’ve heard that dyslexia is life-long, that it affects many parts of a person’s thinking and achievement, not just reading and writing, and that it can be complicated to address. So, can anything be done for dyslexia? Absolutely, yes! The International Dyslexia Association recommends a structured literacy instruction approach. That means reading and writing instruction that addresses all 5 components of literacy (letter-sound relationships, phonemic awareness, fluency, vocabulary and comprehension) and is systematic, cumulative explicit, and diagnostic. 

That means skills are taught directly (not inferred from lots of reading, which is something dyslexic readers find incredibly difficult or impossible). Instruction follows a purposeful sequence, usually from most common patterns to less common ones. It is cumulative and diagnostic, meaning skills are built and reviewed over time, until a child has mastered them, and that lessons are planned based on frequent assessments of a child’s particular needs, rather than adherence to a prescribed curriculum.

One type of structured literacy teaching is the Orton-Gillingham approach. It’s been around since the early 20th century, and has a long track record as one of the most effective ways to improve reading and writing in people with dyslexia. Many popular reading curricula are based on Orton-Gillingham, like The Sonday System, Wilson Reading, and Barton. No matter what approach you choose, instruction should be individualized and intensive enough to allow a child to make progress. At Deep Roots Learning Solutions, we strongly recommend that students work with a tutor at least twice a week, for a 50-minute session. That’s pretty standard among Orton-Gillingham tutors. 

How to get the school to provide dyslexia tutoring

Even after you’ve addressed the first challenge of finding your child dyslexia services – understanding the different approaches – you may be dealing with the challenge of getting your child’s school to educate them appropriately. While some schools have dyslexia therapists or Orton-Gillingham or Wilson-certified teachers working intensively with students, other districts are not forthcoming with those resources. A child who is struggling with schoolwork due to an identified learning disability, including dyslexia, should qualify for an IEP (Individualized Education Plan) that includes appropriate literacy services. 

In order for a child to get an IEP, the school will evaluate them through testing and a review of their school records. This process can be daunting, but it is important to understand that you and your child have rights in this process, outlined in the Procedural Safeguards document the school must give you as part of this process. The details vary by state and it is worth reading and understanding. The bottom line is that those safeguards help ensure that your child gets the services and supports they need and that their voice and yours are adequately represented in the IEP process. 

What if the school isn’t?

But what if the public school isn’t providing the right services? This can happen for a lot of reasons, and it can be very challenging. For example, the school might respond to a dyslexia diagnosis by saying something like, “We don’t use the term dyslexia.” or “Dyslexia is handled under 504 plans.” Blanket statements like that are illegal, to put it bluntly. The term dyslexia is part of IDEA, the Individuals with Disabilities Education Act , which is the federal law that governs the IEP process and special education services. In many cases, the district has policies or common practices in place that aren’t in line with IDEA. Administrators sometimes get the mistaken idea that those policies take precedence over federal education law. This document from the US Department of Education from 2015 is a great starting point to share with them to help clarify their understanding of their responsibilities. 

Another reason schools sometimes fail to provide needed services is staffing. They’ll say, “We don’t have a teacher who teaches that,” when asked for a service like Orton-Gillingham reading instruction with a certified provider. If these services are deemed necessary, and the district does not have a teacher who can provide them, they need to a) train one (certification for Orton-Gillingham or another reading approach takes more than a year) and/or b) hire one. In some cases, the district finds a professional to hire or contract with, and in other cases, parents have been able to refer a tutor they have been working with to contract with the district instead.

As a former special education teacher, I would love to say “Work with your district! They know your child and have her best interests at heart! Trust them!” In many cases, that’s true at the school level. But there are still many cases where the district does not act in a child’s best interest. You may consider hiring a special education advocate (or at least bring a knowledgeable friend to the IEP meetings to help you take notes) to help you navigate the process and ensure that the IEP meets your child’s needs . Always request that the district put their decisions in writing.

An alternative if the district is not meeting your child’s needs is seeking services elsewhere. If there is a Children’s Dyslexia Center in your area, they provide free Orton-Gillingham tutoring to children who qualify. If you want to hire a private tutor, look for lists of certified tutors from the Children’s Dyslexia Center, Orton-Gillingham Academy or Wilson Reading . If there are not many tutors in your area, many tutors also offer their services online. If you want to talk about whether online tutoring with us would be a good fit for your child, contact us here .

Beyond seeking tutoring services, some parents choose to send their children to a private school (or even choose to move to a different location!) that will better meet their needs. This is an enormous change, and I think it speaks to how challenging it can be to get appropriate services in some schools! In some cases, school districts end up paying for a child’s private school placement when the local school is not able to provide needed services. This process is long and complicated, and often best navigated with the support of an advocate or special education attorney.

Another option if local schools aren’t the right fit is homeschooling. There are many parents whose homeschool journey began with concerns about children who weren’t learning to read. There are many groups of homeschool parents who teach using structured literacy or Orton-Gillingham, and many programs designed to meet the needs of parents teaching their children. For some families, this is a short-term decision to focus on getting reading skills up to speed, and for others it’s a long-term schooling change.

Recommendations for kids with dyslexia

OK, if you’ve made it this far, you deserve a topic that’s a little lighter. Let’s talk about the rest of your kid’s life, outside of schooling. Here are some ways to support your child after a dyslexia diagnosis, outside of education decisions:

  • Get some decodable books: These books are written for readers in the process of learning to decode. They limit the word choices in the book to words the kids can sound out, and a small handful of irregular words (like was). These books provide essential practice while kids are learning to decode, as well as building their fluency, reading stamina, and confidence! Some of my favorites are listed below. Check out the whole list here
  • Read Thank You, Mr. Falker by Patricia Polacco with your child. This picture book about a struggling reader who finally learns to read beautifully captures the experiences of embarrassment and frustration many children experience when they struggle in school, as well as the pride and joy when that begins to change. In this video version, Jane Kaczmarek reads the book .
  • Enjoy audiobooks! Audiobooks (from Audible or from your local library’s ebook collection) are a great tool for helping kids with dyslexia develop comprehension, vocabulary, and knowledge while their decoding skills grow. They can also be a helpful tool for older students who are trying to keep up with the volume of reading in middle and high school. 
  • Do things that build joy and confidence. Some things are hard right now, especially when a dyslexia diagnosis is new. The gap between your child’s reading and their peers can seem huge and overwhelming. Resist the temptation to overload them with services and tools and programs and whatever else. Leave time in your family’s schedule for laughter, physical activity, rest, and sleep. That means balancing multiple priorities, like tutoring, sports, dance, and family time. It’s hard and will need adjustments over time, but it’s worth it because happy, healthy kids learn better, too!

But first, breathe!

Choose your favorite inspirational meme, whether it’s putting on your own oxygen mask first, pouring from an empty cup, or boulders, pebbles and sand. Take some time to feel your feelings about this new aspect of your child’s life, write down your thoughts and questions, and plan your next steps. You won’t be able to conquer every challenge at once, but you can steps in the right direction!

For parents, navigating what to do after dyslexia diagnosis can be confusing, exhausting, frustrating, and expensive. Of course, you want to do what you can to get results as soon as possible, but remember that this is a marathon, not a sprint. You’ll be guiding your child through the education system throughout high school and likely beyond. You’ll find resources and people that will help you fill in the gaps and meet new challenges. And you will get better at it as you go.

If you are considering online Orton-Gillingham tutoring for your child, contact us for a consultation and demo lesson to see if it is a good fit for your family.

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