Your Child is Dyslexic. Now What? A Guide for Parents in Getting the Right Help

Your child has just been diagnosed with dyslexia.

You may feel RELIEVED that you have an answer to the perplexing question that has plagued you for a while, “Why is my bright child having so much difficulty learning to read?”

You may also feel CONFUSED as dozens of other questions pop into your mind now. Most of all, “Now what?”

And you may feel FRUSTRATED at the struggle to get your child the services he needs in school.

So what’s a parent to do?

Here I outline the best resources to help you in your journey to provide your child with exactly what he needs to become a proficient reader, enthusiastic learner, and — most of all — happy, confident person.

Where to Go, What to Do: The Big Picture

In your journey to find the right help for your child, you will meet many people and perhaps visit many websites. How do you know who to listen to and what your child needs?

You need a (pardon my vernacular) “BS Detector.”

What is that? It is KNOWLEDGE.

It is knowledge of what dyslexia is and how your child’s brain is wired differently.

It is knowledge of how your child needs to learn differently and what appropriate intervention looks like.

It is knowledge of the laws — both federal and local — that guarantee your child the right to a free and appropriate public education (FAPE).

And it is knowledge of the support systems available to you, so you can make connections with other parents and members of the dyslexic community. There is nothing like the feeling that others understand what you and your child are going through. Their experiences will bolster your resolve and provide assurance that you are doing the right thing for your child.

With this knowledge, you will be ready to get your child the right help and set her up for success. Your “BS Detector” will be up and running.

So let us take each of these in turn:

Understanding Dyslexia — The Must-Have Book

There are lots of articles and books about dyslexia. But I know you’re busy, so let’s not have you waste time reading the same cursory material over and over again.

Get the book that will dig deep and teach you just about everything you need to know to understand dyslexia:

Overcoming Dyslexia, by Sally Shaywitz

For parents wanting to gain a lot of information from one source, this is the book! It is 414 pages, but don’t be intimidated. It is written in user-friendly terms and provides a comprehensive explanation of dyslexia, its symptoms, diagnosis, and treatment.

Dr. Sally Shaywitz is Co-Director of the Yale Center for Dyslexia & Creativity. She is considered one of the leading experts on dyslexia in the nation.

Getting Help for Your Child — The Most Effective Intervention

The gold standard for effective treatment of dyslexia is the Orton-Gillingham (OG) approach. It embodies the following features that make it effective, according to brain-based research:

*Multisensory. The teacher uses visual, auditory, kinesthetic, and tactile modalities.

* Explicit. Concepts are directly taught and practiced, not just mentioned or assumed.

* Language-based. Lessons teach systematic phonics, components and structure of spoken and written language.

*Diagnostic and prescriptive. Lessons are planned prescriptively each session, based on ongoing diagnosis of student’s ability and mastery. This happens optimally in a one-to-one setting.

* Cognitive. Students learn generalizations and rules that govern language structure and spelling. Rules are applied to mastery. Students think, not guess.

* Structured and sequential yet flexible. Concepts are taught from the simple to the complex, and learning is cumulative. Reading, writing, and spelling are connected. The flexibility is in providing varied reinforcement to mastery, based on individual student need.

* Emotionally sound. Concepts are taught to mastery, cumulatively. This ensures a high degree of success, building confidence and self-esteem.

* Inherent comprehension. There is always the inclusion of connected passages (stories) to include the focus concept. This reinforces the primary goal of reading — to create meaning.

Advanced professionals understand and incorporate phonology (systematic organization of sounds in language) and morphology (structure of words and word parts) in their instruction.

Keep all these features in mind when evaluating treatment options for your child.

Understanding Dyslexia Laws — Best Resources

There are both federal and state laws that apply to your child’s right to a free and appropriate public education (FAPE).

The federal law governing services for all children with disabilities is the Individuals with Disabilities Education Act of 2004. It mandates school districts to find, evaluate, and provide services for students that qualify with a disability, as defined by the law. Dyslexia falls under the category of Specific Learning Disability (SLD).

An easy-to-read summary of IDEA can be found here.

The government website for IDEA is here.

The rights of students with disabilities got a boost in a recent landmark case. In 2017, the U.S. Supreme Court, in an 8–0 decision in the case Endrew F. v. Douglas County School District, ruled in favor of a higher standard of education for children with disabilities.

For parents wanting a comprehensive understanding of IDEA and advice on how you can advocate for services for your child, I recommend these two books by lawyer Peter Wright and psychotherapist wife Pamela Wright, leading advocates for children with disabilities:

1) Wrightslaw: Special Education Law, 2nd Edition, by Peter W. D. Wright, Esq. and Pamela Darr Wright; and

2) Wrightslaw: From Emotions to Advocacy, 2nd Edition- The Special Education Survival Guide

Their website, www.wrightslaw.com, includes a newsletter, blog, and other books and training videos for advocacy.

State Laws

State laws regarding dyslexia vary from state to state. There has been a groundswell of support for dyslexia legislation in the past few years, and that has resulted in better laws and better services for dyslexic students in many states.

But the struggle is real, and progress is slow. Some parents find the need to bring legal action against school districts that do not meet the needs of their child under the law. In some cases, school districts have been ordered to reimburse private tuition and tutoring costs.

To find out what laws your state has passed regarding dyslexia, click here.

Finding the Best Professionals — Private Tutoring

If you can afford private tutoring, it is by far the most effective intervention for your dyslexic child, provided you find a competent, experienced tutor for dyslexia.

Do not ask the college kid down the street, a non-specialized tutoring service or a general educator. They have neither the comprehensive training nor the experience to help your child. Your child doesn’t just need help; he needs the RIGHT help! Dyslexics learn differently.

Teachers trained through the Academy of Orton-Gillingham Practitioners and Educators (AOGPE) participate in 60 hours of coursework, 100 hours of supervised tutoring, and a rigorous application process for the Associate level. The Certified level involves an additional 100 hours of coursework, another 200 hours of supervised tutoring, and rigorous application process. You can find an OG tutor certified through the Academy here.

The International Dyslexia Association (IDA) also certifies tutors who meet their criteria for teaching dyslexics, at a “practitioner” level and more advanced “therapist” level. Their provider directory can be found here.

IDA accredits the following independent teacher training programs:

· Academy of Orton-Gillingham Practitioners and Educators (mentioned above)

· National Institute for Learning Development (NILD)

· The International Multisensory Structured Language Education Council (IMSLEC)

· Wilson Language Training

· Yoshimoto Orton-Gillingham Approach

Additionally, there are OG-based programs that may be effective for your child. Wilson and Slingerland are programs that were developed for classroom application. Barton is a scripted program geared toward parents wanting to help their children. Lindamood Bell is a program often used by speech and language pathologists and professionals.

It is the knowledge, skill level, and experience of the tutor that makes all the difference. Also of importance is rapport with your child. You’ll want someone that inspires your child and is positive and fun.

Most professionals offer a free consultation. This is an opportunity for you to find out the tutor’s qualifications related to experience and training, as well as personality. Discuss your child’s needs, ask questions, and evaluate whether (s)he is a good fit for your child.

Your dyslexic child needs a special person that can skillfully transform her into a successful reader. Take the time to find someone with the right qualifications and with whom you feel comfortable.

Finding the Best Professionals — School Settings

If your child’s school has a certified dyslexia therapist, that is nirvana! But most schools do not have OG practitioners on their staff, so you will want to search out school professionals that are best equipped to help your dyslexic child.

Dyslexia laws in many states now mandate teacher training. Some schools and districts implement this better than others. Many special educators and even reading specialists have minimal training in multisensory, structured, language-based intervention. Find out the qualifications and training of the educators in your child’s school, including the extent of their training.

Whole language, balanced literacy, or guided reading programs alone do NOT meet the needs of dyslexic children. And pulling them out of class to give them more of the same will not fix the problem. Computer programs may supplement but should not be used as a primary intervention for students with dyslexia.

Your child needs an educator with comprehensive training in OG or an OG-based program mentioned above. AND it must be implemented with fidelity.

What does that mean?

Services should be provided one-to-one or in small groups of same-level students, 2–4 times per week for an hour per session. (45 minutes can work if implemented at least 3 times per week). Frequency and consistency of intervention is absolutely required in order to affect changes in the brain that result in retention of learning.

The effectiveness of a program has a lot to do with the quality of the teacher. But even a trained professional cannot make optimal gains if she is given six students at different levels all at once.

If you find that you are at odds with your school district in obtaining appropriate intervention for your child, you may want to obtain the services of an educational advocate. While there is no overseeing agency for advocates, this article is a good guide for finding a competent advocate: http://www.wrightslaw.com/howey/10tips.hire.advocate.htm

The 3 Best Parent Websites for Dyslexia Support

I have chosen these websites for their comprehensive offerings for parents, and because they are not connected with any particular for-profit companies or products.

1) Understood is a nonprofit organization with contributions from leading experts in the field.

www.understood.org is their website for parents of children with learning and attention issues. These include dyslexia as well as other special needs such as ADHD and autism.

Typing in the search bar will access informative articles and answers to many of your questions. You can also subscribe to their newsletter and submit questions on the site that are answered by both experts and other parents on the site.

Frequent webinars make it easy to gain knowledge. If you view them live, you can ask specific questions of the experts and get answers right then. If you can’t make it, you can access recordings of the webinars at your leisure.

2) Decoding Dyslexia (DD) is a parent-led, grassroots organization, with a separate movement in each state. It started out of frustration with the lack of appropriate services in the public school system for children with dyslexia. It has grown into a network of powerful advocacy groups that has played a major role in recent dyslexia legislation around the nation.

DD is where you will meet “your people.”

Your state or local DD Facebook page will put you in contact with parents and dyslexia professionals in your area. This is where you can gain knowledge and insight into local service providers, schools, and programs.

You can ask specific questions and get immediate, honest feedback from your community. You can also be notified of events such as fundraisers, rallies, and other support groups in your area. There is power in numbers, and DD is a great way for you to add your voice.

You can join your state’s DD group on Facebook. Some states (i.e. FL) have regional DD pages along with the DD state page.

To find your state’s DD group, click here. http://www.decodingdyslexia.net/info.html

3) Yale Center for Dyslexia and Creativity — Parent Page

http://dyslexia.yale.edu/resources/parents/

This parent page provides a variety of resources for parents, from articles to videos to interviews with professionals. Sally Shaywitz (author of Overcoming Dyslexia) conducts her research and teaching at this sponsoring university center.

The website includes advice regarding symptoms, diagnosis and treatment, talking with school personnel, and finding the right school and college for your child. There are also lots of success stories and articles from parents’ perspectives. I haven’t mentioned all the features of this wonderful website. Visit it to learn more.

Onward! The Future is Bright

You know your child better than any other. Now, with more understanding of her dyslexia, you can ensure that she gets exactly what she needs to become a proficient reader.

With the right intervention, there is nothing standing in the way of a bright, successful, and happy future for your dyslexic child.