my child may have dyslexia

What Exactly Is Dyslexia?

Dyslexia is an unexpected difficulty with reading and writing, despite normal intelligence and adequate instruction.  It is a specific language-based learning difference that is neuro-biological in nature, and therefore tends to run in families. Dyslexia is characterized by difficulties with processing the individual sounds (phonological components) of language; it is not a vision or behavioral problem. 

 

Dyslexia falls under a larger umbrella term of Language-Based Learning Disorders* (LBLD*).  LBLDs affect skills involving listening, speaking, reading, writing, and reasoning.  In addition to dyslexia, they include dysgraphia (writing), dyscalculia (math), verbal language disorders (expressive and receptive) and nonverbal language (body language, facial expression and coordination). 

 

* The “D” can represent different terms based on professional association: “disorder” for medical and “disability” for legal and educational. Additionally, advocates are increasingly using the term “difference” to emphasize the neurological diversity of cognition and learning styles.

Learning Disability Association of America

Link to overview on types of learning disabilities and related disorders such as ADHD and executive functioning

Ted-Ed: What is dyslexia?

 Link to a five-minute TED-Ed video that explains dyslexia from a brain science perspective. 

 

IDA: Dyslexia basics fact sheet

Three-page handout from the International Dyslexia Association covering “just the facts”

 

Understood: Dyslexia fact sheet

One-page color poster with lists and one-sentence talking points

 
Signs of Dyslexia

Signs of dyslexia and related learning disabilities vary by developmental stage and individual child. Investigate further if you consistently notice characteristics that persist over time, particularly if they appear to impede learning. Talk about your concerns with your child’s pediatrician and ask for referrals. Discuss observations with your child’s teacher and request that they carefully monitor your child for signs of language-based learning difficulties.  

 

Yale Center for Dyslexia and Creativity

Signs of dyslexia  List of signs also includes characteristic strengths of dyslexic learners

Understood: Dyslexia signs at different ages

One-page handout listing signs by grade

The International Dyslexia Association (IDA) Handbook

provides a list of general characteristics, listed below:

Oral language  

  • Late learning to talk  

  • Difficulty pronouncing words  

  • Difficulty acquiring vocabulary or using age appropriate grammar  

  • Difficulty following directions  

  • Confusion with before/after, right/left, and so on  

  • Difficulty learning the alphabet, nursery rhymes, or songs  

  • Difficulty understanding concepts and relationships  

  • Difficulty with word retrieval or naming problems 

 

Reading  

  • Difficulty learning to read  

  • Difficulty identifying or generating rhyming words, or counting syllables in words (phonological awareness)  

  • Difficulty with hearing and manipulating sounds in words (phonemic awareness)  

  • Difficulty distinguishing different sounds in words (phonological processing)  

  • Difficulty in learning the sounds of letters (phonics)  

  • Difficulty remembering names and shapes of letters, or naming letters rapidly  

  • Transposing the order of letters when reading or spelling  

  • Misreading or omitting common short words  

  • “Stumbles” through longer words  

  • Poor reading comprehension during oral or silent reading, often because words are not accurately read  

  • Slow, laborious oral reading 

 

Written Language  

  • Difficulty putting ideas on paper  

  • Many spelling mistakes  

  • May do well on weekly spelling tests, but may have spelling mistakes in daily work  

  • Difficulty proofreading 

 

Other common symptoms that occur with dyslexia  

  • Difficulty naming colors, objects, and letters rapidly, in a sequence (RAN: Rapid Automatized Naming)  

  • Weak memory for lists, directions, or facts  

  • Needs to see or hear concepts many times to learn them  

  • Distracted by visual or auditory stimuli  

  • Downward trend in achievement test scores or school performance  

  • Inconsistent school work  

  • Teacher says, “If only she would try harder,” or “He’s lazy.”

  • Relatives may have similar problems

 
Testing Overview

In an ideal world, which dyslexia advocates are arduously working to create, every child would be screened for signs of dyslexia from grades K-2.  Children identified with weaker skills would receive more intensive instruction and close monitoring, and further evaluation rather than “waiting for them to fail.”

 

International Dyslexia Association (IDA): Universal K-2 reading screening 

PDF article explaining what screening is and why it’s important

 

As it is now, families are often left to rely on their own observations, or those of a teacher, and a “wait and see” approach is all too common.  Depending on your child’s age, educational setting, family history of dyslexia and co-morbid diagnoses, you may be offered, or actively pursue, several options for gathering more information about your child’s individual learning profile. 

 

There are two basic evaluation options: school and private.  You can request a school evaluation if your child attends private school; likewise, you can pursue a private evaluation if your child attends public school.  

 

Understood: Chart of private vs. school evaluations

PDF lists the pros and cons of each option 

 

Understood: Types of tests for dyslexia 

PDF article with easy to read basic information and examples of testing stimuli

 

IDA: Dyslexia assessment

PDF article covering what is it and how it can help, with references 

IDA: Testing and evaluation 

PDF article going into greater depth, especially skill areas assessed 

 

Understood: Evaluations 

Link to exhaustive resources on evaluations written for parents

Understood: Evaluation terms

Comprehensive list with brief explanation of various types of evaluations and different terms for each

Here is an explanation of the most basic testing terminology you may encounter:

 

Screening

A quick measure of a specific skill at a specific developmental level that is predictive of later outcomes.  For example, a kindergartener may be asked to recognize and generate rhymes, write their name, clap syllables and blend sounds in words.  If a child fails screening, further assessment and monitoring is warranted.  If a child passes a screening, it suggests that the child is within normal limits of skill development, but does not rule out a learning disorder. If you continue to suspect learning difficulties, consider further testing or a comprehensive evaluation.

 

Evaluation

An evaluation includes comprehensive testing for a range of skills and may include cognitive abilities such as working memory or attention; auditory processing; auditory comprehension; and language skills in addition to reading and writing.  May involve a multi-disciplinary team including input from psychologists, SLPs, learning specialists and classroom teachers.  

 

Assessment 

Assessment and evaluation are often used interchangeably, but assessment more often refers to a tool that measures specific skills in greater depth than a screener.  These measures can be formal, meaning that they are norm-referenced to provide comparisons to same-age peers through standardized scores.  They can also be informal, meaning that they provide information about the strengths and challenges of the individual child, as well as learning style and successful supports, but do not produce standardized scores.  Both formal and informal measures can be used to monitor progress.

 
School Evaluations

At the beginning of the school year, teachers assess children on literacy skills.  If your child falls below grade-level expectations, or consistently has difficulty learning literacy skills, teachers will begin to provide increased support in the classroom.  This may include differentiated or small-group instruction, and is intended to bridge learning gaps so that evaluation is unnecessary.  In the public system this instruction is called either Response to Intervention (RTI) or Multi-Tiered System or Support (MTSS).

Understood has extensive information on these programs:

 

If your child continues to fall behind, s/he may be referred for a comprehensive educational evaluation.  After the referral, a team meets to discuss the plan and decide on assessments.  This team may include a school psychologist, classroom teacher, resource specialist, SLP (Speech Language Pathologist), OT (Occupational Therapist), family and/or school administrators.  The assigned case manager will communicate with you throughout the process, and should give you a timeline so you can prepare your child. Preparing Your Child for Testing?

 

Evaluations may involve classroom observation, interviews, review of work samples and records, as well as assessments in areas such as language, cognition, attention, reading, writing and math.  Depending on the number of tests, the evaluation may take place over days or weeks, but (in California) must be completed within 60 days of the referral.  

 

After assessments are completed, each professional writes a report of findings and recommendations.  The team determines if your child qualifies for special education services, and discusses results with you at the eligibility meeting.  Schools use the term “specific learning disability” in reading, writing or math instead of the terms “dyslexia,” “dysgraphia” or “dyscalculia.”  If your child qualifies, the team presents the individualized educational plan (IEP), which includes type and amount of services, along with accommodations and specific, measurable goals.  If your child attends a private school, you can accept the IEP, but refuse services.

 

Understood: Understanding Response to Intervention 

Link to article on Understood site

Understood: What’s the difference Between RTI and MTSS?

PDF Article

 

Understood: School evaluation process

PDF article for parents explaining what to expect 

 
Private Evaluations

Private evaluations are usually administered by educational psychologists or neuropsychologists.  You can request a private evaluation at any time; however, they often have long waiting lists.  Testing for dyslexia is often not covered by insurance, and private evaluation can be expensive, so inquire early in the process.

  

Understood outlines steps to getting a private evaluation for your child:

  • Gather specific observations about your child’s patterns and challenges

  • Talk with your child’s doctor about your concerns and ask for a referral to the appropriate specialist(s)

  • Ask for recommendations from other parents, schools, parent training information centers, professional organizations, advocacy groups, insurance networks, or search engines 

  • Look for ways to reduce costs (e.g., research studies, teaching universities)

  • Ask your insurance company what is covered and reimbursement rates for out-of-network specialists

  • Talk with evaluators; look for a good fit with your child in addition to practical factors like availability and price

  • Talk with your child’s school about useful information to include in the report 

 

NBA maintains a list of psychologists who provide educational testing in the North Bay and San Francisco. 

International Dyslexia Association (IDA)

PDF fact sheet with extensive background information, as well as specific questions to ask prospective professionals

Access more PDF articles and videos from Understood:

7 Steps to Getting a Private Evaluation  

13 Questions to Ask a Private Evaluator 

How to Find Local LD Specialists 

What Special Education Testing Results Mean 

Video: Inside a Dyslexia Evaluation 

 
Preparing Your Child for Testing

Knowing what to expect can help to alleviate some of the stress of testing, which may result in a more accurate representation of your child’s skills.  Give your child specific information about where, when and who will administer testing. Initiate a discussion with your child about how everyone has different strengths and challenges: ask your child about theirs and disclose your own.  Make sure your child understands that these tests are to gather information about how to support them in their learning, not about how “smart” they are.

 

Understood produced a video about the evaluation process that you can watch with your child, which includes questions to guide your conversation.

What to Say if your Child is Nervous About Getting Evaluated

PDF Article

How to Talk to Your Child About Getting Evaluated 

PDF article for parents explaining what to expect.

 
How to Support Literacy Skills

Support looks different at different stages of your child’s development, but cultivating a love of learning and literature should remain a constant.  Read to your child every day. Talk about what you read, and use that as a springboard for discussion. Model reading for pleasure. Visit the library.  Encourage listening to audiobooks to access content beyond your child’s current reading ability.  Most importantly, keep perspective and provide unconditional love and support to your child.  Your most important role is as a loving caregiver.

 

Advocating for reading instruction that is aligned with current research will help every child; but instruction that is explicit, systematic and cumulative  <local link: Evidence-based Approaches> is crucial for children with an underlying learning disorder. 

 

For younger children, playing with sounds, syllables and words can help build foundational skills necessary for reading.  Activities that promote these phonological awareness skills could include singing nursery rhymes, rhyming games, tapping syllables, blending sounds in words (“sssss/ uuuuu/ nnnnn - what word is that?”), breaking apart words (“what’s butterfly without butter?”), and isolating sounds in words (“what’s the first sound in dog? What’s another word that starts with the /d/ sound?”)

 

Download these PDF handouts and articles for more in-depth explanations and ideas:

Understood: Ways to build phonological awareness in Pre-K and Kindergarten 

MakeTakeTeach: Phonemic awareness parent handout Kindergarten 

PDF that lists skills child should master by end of Kindergarten with fun ways to practice at home

 

Northern Illinois University: Raising readers: Tips for parents 

PDF with concise definition of phonemic awareness and types of activities to foster specific skills, as well as raise general literacy for young children

 

National Center on Improving Literacy

Highly recommended article written for teachers to explain the how and why of practicing phonological awareness skills at home

 
IEP, RTI, SLD, What do all these terms mean?

Familiarizing yourself with terminology can help when communicating with specialists, but don’t expect yourself to become an expert.  Professionals are trained to explain concepts to clients and caregivers, so if you don’t understand something, ask questions.  You are the most valuable member of your child’s team and it’s critical that you have the background knowledge to make informed choices. 

 

Here are several online sources for explaining terms related to dyslexia and other learning disorders: 

 

Julia - Slingerland High Frequency words handout

 

U of Michigan: Dyslexia glossary 

Extensive list of common terminology and phrases often used by education and medical professionals (e.g., psychologists, physicians, speech-language pathologists) in diagnostic reports, individual educational plans (IEPs), and therapy. 

 

The Dyslexia Resource: Dyslexia glossary 

List of key terms, phrases and acronyms; includes many terms specific to reading instruction

 

Landmark School

Mostly broader terms related to learning disorders, with citations

Understood: Important terms 

Different pages of terms used by teachers, SLPs, lawyers and learning specialists

Yale Center for Dyslexia and Creativity: Vocabulary of dyslexia diagnosis and treatment

Brief list for vocabulary of dyslexia diagnosis and treatment