A Comprehensive Guide
A dyslexia diagnosis, or the dyslexia evaluation process, can bring up many questions. Researching online will leave you with a long list of things to read, to do, and to buy. Here are my recommendations for families wondering what to do after dyslexia diagnosis.
A dyslexia diagnosis can bring intense emotions for you, your partner, your child, and other children in the family. You might feel overwhelmed, relieved, guilty, or something entirely different. For many people, dyslexia isn’t even on their radar until a child struggles with reading and writing.
Some people like to gather all the information they can. They hit Google hard, bookmarking, highlighting, and printing everything that seems useful. Others might feel like they are slowly drowning in reports and recommendations and hope that some expert will throw them a life preserver. It’s important not to lose sight of your real goal. You are helping your child with dyslexia to be confident, skilled, happy, and successful.
Affiliate Statement: This post contains affiliate links. If you buy something from a link in this post, we may get a small commission on your purchase.
Tools for You, Supports for Your Child
Educate Yourself
After a dyslexia diagnosis, it’s important to learn more about the condition. There are many widespread misconceptions about dyslexia. Some think it’s an “old-fashioned” term we don’t use anymore and others think dyslexia involves physically see letters and numbers backward. We have learned a lot about the brain and 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. It’s a great place to learn about particular school districts, local professionals, and many other resources.
- Find Your Local SEPAC. Many school districts have a Special Education Parent Advisory Committee, 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 relevant to the 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.
Recommended Reading
There are many good books you can 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. She 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 much more than a child’s reading and spelling. It can also affect 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
Structured Literacy Instruction
You’ve heard that dyslexia is lifelong. It affects many parts of a person’s thinking and achievement, not just reading and writing. 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. Structured literacy addresses all five components of literacy (letter-sound relationships, phonemic awareness, fluency, vocabulary, and comprehension). It is taught in a systematic, cumulative, explicit, and diagnostic way, to meet students where they are and fill in gaps.
Structured literacy instruction involves teaching skills directly (not inferred from lots of reading, which 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 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 has 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 face 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 Providing the Right Services?
If the public school isn’t providing the right services, 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.
Staffing Issues
Another reason schools sometimes fail to provide needed services is staffing. They might 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 have a couple of options. They could a) train one and/or b) hire one. In some cases, the district contracts with an outside professional. In other cases, parents have been able to refer a tutor they have been working with to contract with the district instead.
If your child needs a specialized service, like occupational therapy or structured literacy tutoring, please make sure the person providing the services has the appropriate certification. Many certifying organizations provide lists, or will share an individual’s certification status upon request. The school should be able to provide specific information about the person’s certification, as well.
School Issues
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.
Seeking Services Outside the School System
If the district is not meeting your child’s needs, seeking services elsewhere is another option. Here are some alternatives:
- Children’s Dyslexia Centers: If there is a Children’s Dyslexia Center in your area, they provide free Orton-Gillingham tutoring to children who qualify.
- Private Tutors: Look for certified tutors from the Children’s Dyslexia Center, Orton-Gillingham Academy, or Wilson Reading. If there are not many tutors in your area, many offer their services online. If you want to discuss whether online tutoring with us would be a good fit for your child, contact us here.
Some parents choose to send their children to private schools or even move to different locations that better meet their needs. This is an enormous change, and 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 is homeschooling. Many parents whose homeschool journey began with concerns about children who weren’t learning to read have found success. 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
Beyond education, here are some ways to support your child after a dyslexia diagnosis:
Get Decodable Books: Decodable 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, building their fluency, reading stamina, and confidence.
Read Thank You, Mr. Falker by Patricia Polacco: 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 trying to keep up with the volume of reading in middle and high school.
Building Confidence and Joy
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, tools, and programs. 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!
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 take steps in the right direction!
Conclusion
For parents, navigating what to do about dyslexia 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 maybe 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.
