FAQs

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What is dyslexia?

Per the International Dyslexia Association, “Dyslexia is a specific learning disability that is neurobiological in origin. It is characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge.”  Children with dyslexia will require systematic and explicit instruction in how to read via Structured Literacy.  For more information on dyslexia including a list of signs we recommend further reading here at this link: https://www.thedyslexiainitiative.org/dyslexia.

What is dysgraphia?

Per the International Dyslexia Association, “dysgraphia is the condition of impaired letter writing by hand, that is, disabled handwriting. Impaired handwriting can interfere with learning to spell words in writing and speed of writing text. Children with dysgraphia may have only impaired handwriting, only impaired spelling (without reading problems), or both impaired handwriting and impaired spelling.”  Children with dysgraphia may also have challenges with written expression, meaning the ability to get their thoughts onto paper.  Children with dysgraphia will require systematic and explicit instruction in handwriting, spelling, grammar and syntax.  For more information on dyslexia including a list of signs we recommend further reading here at this link: https://www.thedyslexiainitiative.org/dysgraphia.

What is dyscalculia?

Per Understood.org, “Dyscalculia is a learning disability in math. People with dyscalculia have trouble with math at many levels. They often struggle with key concepts like bigger vs. smaller. And they can have a hard time doing basic math problems and more abstract math.”  Children with dyscalculia require systematic and explicit instruction in mathematics at a pace that works best for them.  For more information on dyslexia including a list of signs we recommend further reading here at this link: https://www.thedyslexiainitiative.org/dyscalculia.

What is comorbidity?

Co-morbidity means the simultaneous presence of two or more conditions.  Dyslexia has a high comorbidity rate with other challenges like ADHD, dyscalculia, dysgraphia and more.

What is the co-morbidity rate with ADHD?

It is believed the co-morbidity rate between ADHD and Dyslexia is approximately 30%.  As with all things dyslexia, the science is always evolving and as the science evolves the data may change, but this is the statistic that has been shared with us from reliable sources.

Is dyslexia inheritable?

Yes, if you, the parent, has dyslexia then each child you have has a 50% probability of being dyslexic themselves.

What is working memory?

Per MedicineNet.com, “working memory is a system for temporarily storing and managing the information required to carry out complex cognitive tasks such as learning, reasoning, and comprehension. Working memory is involved in the selection, initiation, and termination of information-processing functions such as encoding, storing, and retrieving data.”  William Van Cleave has a great, simplified example of this that he calls the stove top.  Think of a six-burner stove and on each burner is a pot.  The front three pots are the things you are juggling at that moment, and the back three pots are the automatic processes you don’t have to really think about, they just run on their own.  A child with a low working memory who is struggling with, for example, dysgraphia, has a lot that they must concentrate on from the legibility of their handwriting to their spelling and then content.  Depending on the effort they are putting forth, the content may get less attention because the child is tired by the time they get to the content.  Another example is a dyslexic child being asked to take class notes.  There’s an enormous amount of concentration that has to go into taking notes from looking at the board, listening to the teacher, thinking about what’s going to be jotted down, how fast one can do that, what happens if a mistake is made on the notes being taken that require correction, etc.  A child with low working memory will struggle with processing all of those various tasks, and will be unsuccessful in taking good notes, thus why a common accommodation is to provide the child with class notes so they can concentrate on what is being said / explained at the time, and not focus on a task that diverts their attention away from content.

What is the difference between balanced literacy and the science of reading?

Welcome to the Reading Wars.  This is a simple yet complicated question that I’m going to oversimplify due to the need to be succinct, but what I encourage anyone asking this question to do is to read Faith Borkowsky’s book Failing Students or Failing Schools which can be purchased from any retailer including Amazon.  It is a very good explanation of the history of reading instruction and is easily digestible and a must read for all parents. 

Now, to oversimplify, Balanced Literacy is the “compromise” between the Whole Language movement, which asserts that the child must be taught the whole word, not the code to break the alphabetic system down into its components to build upwards to comprehension and fluency, aka, a successful reader.  The Science of Reading asserts through decades of scientific data what the pathways of the brain are and how those pathways take in reading, which is a manmade invention approximately 5000 years old.  Whole Language asserts humans are born readers while the Science of Reading asserts we must in fact be taught to read this human invention, and that evolution has not made reading automatic.  Balanced Literacy is meant to be the compromise where some phonics is taught in Kindergarten and the first half of 1st grade, but no more.  The pillars of reading are not adhered to by Whole Language or Balanced Literacy, but only through the Science of Reading via Structured Literacy can a child truly be taught how to read. 

To find out more about the science of reading via Structured Literacy please explore this link: https://dyslexiaida.org/effective-reading-instruction/.

How do I get started?

First, start by knowing that your child is amazing and so are you.  Second, prepare yourself to work hard for the legal rights of your child.  Learn all you can about dyslexia, reading instruction via Structured Literacy, and yours and your child’s rights under the various laws that protect our children.

Initiate an evaluation for the whole child via the process under IDEA, and be clear about all areas of concern.  A good evaluator will adjust their evaluation as they work with your child and may see additional areas of concern.  You should submit your request for the evaluation to the school as soon as possible as federal and state regulation timelines allow a specific amount of time before the evaluation must be completed.  While you are waiting, explore what programs your district has adopted, find your community, and start asking questions.  Remember this is always a learning path.

Lastly, we kind to yourself and hug your child often.  Grace, patience and perseverance are necessary in our world.

For further information please check out this page where we’ve linked all of Emily Hanford’s very valuable podcasts and a templet for requesting an evaluation under IDEA: https://www.thedyslexiainitiative.org/for-parents.

What are the best programs?

At The Dyslexia Initiative we do not recommend or support any programs.  For specific programs what we do is support those programs backed by the International Dyslexia Association.  The biggest piece of advice we give here is that the best option for our children is an instructor who is capable of being prescriptive with systematic and explicit instruction in reading and writing.  As individuals who are truly capable of being prescriptive are in short supply, we defer to IDA’s list.  We caution parents to monitor progress themselves by knowing what the scope and sequence of the program they ultimately use is, and measure with quantifiable tools like the GORT, KTEA and others on a frequent basis to truly track progress and adjust accordingly.

Can I specify what program should be used with my child?

Technically, yes, but it is not recommended.  The primary reason is, if you as the parent, push for a specific program and it is not the right fit for your child, then the school will be in a “See, I told you so!” position.  Push for a gold standard, highly explicit, systematic program, and then monitor the results.  If some progress is not being gained in a sufficient time frame (6-8 weeks max), then there is an issue with either its implementation, fidelity, or it just isn’t the right fit for the child.  A key thing to remember is one program may be AMAZING for one child, and just not work for another.  That is not a slam against the program, but the individuality of the child.  Therefore, prescriptiveness is key, and why the “individualized” of the federal law IDEA is stated as well.  Instruction must meet the individual needs of the child to be successful.

What is IDEA?

IDEA is a Federal law called the Individuals with Disabilities Education Act.  Some call it “IDEA” and other refer to it as “The IDEA.”  The purpose of IDEA is to “ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.”  It is a special education law, but remember, special education is a SERVICE, not a PLACE.

What's the difference between 504 and IEP?

This is a big question and we’ve written a lot about this and detailed as much information as we can on our website which can be found via this link: https://www.thedyslexiainitiative.org/504-v-iep.  On this page we have also included the link to the presentation Peter Wright shared with us on Dyslexia Coffee Talk, as well as a template to request an evaluation under IDEA.

What is an advocate? Where can I find one?

An advocate is a support person who is familiar with the law and the disability with which your child struggles.  They are not lawyers.  They are there to help you fight for your child’s educational rights, and help you get the right identification, goals, etc.  We recommend looking at www.COPAA.org for an advocate in your area but note that COPAA does not vet the advocates listed.  It is important that you do your own due diligence on the advocate you are considering and seek recommendations.  Note too that once you hire an advocate, like any service provider, if you are not happy with that advocate it is ok to move onto a new advocate.  We elaborated more on what is an advocate here: https://www.thedyslexiainitiative.org/post/what-is-advocacy.

Can I have an IEP and a 504 at the same time for the same child?

Yes, you can, but many will ask why.  The concept of 504 is to provide accommodations.  The concept of IDEA is to provide accommodations and services.  Comorbidity is real so if one comorbid condition is under 504 and another under IDEA then we ask if the team really understands the interaction between the two challenges.  If they are not related and comorbid then perhaps one can argue to support both types of services, but it is two different teams, two different sets of paperwork and two different laws, so why go through that?  Push for the prevailing challenge to be under IDEA, and all comorbid related challenges and how they intertwine, and be done with it.  If the conditions are not comorbid, still list them all under IDEA.

What is an evaluation and how do I obtain one for my child?

Because of the state in which The Dyslexia Initiative founders reside, we feel we must clarify the difference here in a 504 versus an IDEA evaluation.  Under 504 a child is given a limited set of evaluations to determine if the child is only dyslexic.  Under IDEA the whole child is evaluated to determine not just if dyslexia is present, but other possible comorbid conditions.  A limited dyslexia evaluation will not address the question of what other challenges may or may not exist for the child, and therefore remediation, if provided through GenEd, is limited and focused only on one aspect, reading.  Dyslexia however is more than just reading, and the probability that at least one comorbid condition exists along with the dyslexia is extremely high.  A whole child evaluation allows the parents and the school to tailor services and accommodations to all the child’s needs and address all areas of weakness appropriately.  Even if you as the parent opt for a 504 plan for your child, we recommend only doing the IDEA evaluation in order to best serve the whole child.  A template for the evaluation may be found at this link: https://www.thedyslexiainitiative.org/for-parents.

What is a subtest v a composite score and why should I care?

The best way to explain this is to think of your own education.  Within a semester you take several tests.  Each test is equivalent to the sub-test and the composite score is the average of all those tests, i.e. the final semester grade.  We as parents need to care about the subtests because of how averages work which is if your test scores are 57, 95, 96, 72, 92, 100, and 84, then the average is 85.14 or rounded to the whole number is 85.  If we are taking about a composite score, then the child is within the average range of intelligence even though they are at the bottom of the range.  By just looking at the composite score, an argument can be made that the child is not in need of any services as the child is average, however, this is why the sub-tests are critical.  Note the scores themselves.  Depending on which evaluation is being addressed, that 57 is highly concerning.  As advocates, we would also focus on the 72 and the 84 given the other scores.  Clearly weakness exists.

“It is within the subtests that you find dyslexia.” – Peter Wright

What evaluations are best for dyslexia?

For this question we will be providing links.  This is a complicated question and deserves a robust answer.

Components of Comprehensive Dyslexia Testing: Part I- Introduction and Language Testing

https://www.smartspeechtherapy.com/components-of-comprehensive-dyslexia-testing-part-i-introduction-and-language-testing/?fbclid=IwAR0wak5IWA2_8ZuGKq9HVDqnVP6KM-_DF3vaK6HnWs-4a6yLhxd7rsmd3JY

Part II: Components of Comprehensive Dyslexia Testing – Phonological Awareness and Word Fluency Assessment

https://www.smartspeechtherapy.com/components-of-comprehensive-dyslexia-testing-part-ii-phonological-awareness-and-word-fluency-testing/

Part III: Components of Comprehensive Dyslexia Testing – Reading Fluency and Reading Comprehension

https://www.smartspeechtherapy.com/part-iii-components-of-comprehensive-dyslexia-testing-reading-fluency-and-reading-comprehension/

 

Each diagnostician will do things a little differently and each one is ultimately in charge, but know what the evaluations given are for and how they assess the child, what subtests are within the composite as not all may be used, and what each one measures.

What can I do if I disagree with the evaluation?

If you disagree with the evaluation you have the right to request an Independent Educational Evaluation at public expense.  The IEE process is defined in IDEA under § 1415(b) Types of Procedures IEE.  We encourage defining your own preferred list, vetting all candidates the district proposes, including a Freedom of Information Act request on the financials to see how much the district paid those individuals in the last school year to determine bias, and know that you do not have to go with the district’s desired provider.  They do have to agree though.  Recently we became aware of a district who put a mile range that all providers had to fall within, and this is not allowed or supported under IDEA.  Familiarize yourself with the law and know your rights.  Additionally, we advise to ask the school for their “rules of engagement” to be able to accept the IEE.  We have seen districts throw up barriers that were not realistic to reject an IEE which is why we recommend getting the “rules” up front.  Remember, for everything that does not seem right, ask them to provide the law and / or policy in writing to support the statement / denial / whatever.  If it is not supported by law, then it is not actionable.

Should I write the goals?

Technically yes, you can, but it is not normally recommended.  Push the team towards the right goals, but we do not recommend the parent being the author of those goals.  You want to understand exactly what your child is struggling with, what the state expectations are per grade, and write goals around those state expectations and struggle, and you want the gains to be quick, to grade level, and be mathematically quantifiable.  Progress needs to be real and tangible and be able to be integrated into your child’s ability to function in the classroom in correlation to those gains.  Remember, a true IEP team is collaborative and equal, always taking the child’s best interests into consideration, and striving for true grade level achievement and beyond.

Note, I said not "normally."  An extremely savvy parent with the right support team privately can indeed present goals as the parent and team can have a better understanding of what the goals need to be.  This is a parent who is fully aware of present levels of performance and fully understands the IEP process and therefore what areas of weakness exist and what targeted goals are essential to helping their child achieve success.  Ideally, all parents can reach this level of understanding and then can drive their child's IEP to the levels their child truly needs.  However, bear in mind that the writing goals is really a team decision during IEP meeting and parents should bring their ideas to the table.  It is often helpful to have written input from their dyslexia private tutors, if this is a possible reality for the family.

Additionally, write concerns in Parent Concern Letter and include deficits you see and goals / things you want to see improvement in so the school now has a paper trail that will needs a PWN if they decline.  This  helps with potential due process and state complaints, should that be necessary down the road.

What is a good goal?

A good goal is one that takes into consideration what the child is specifically struggling on, what the grade level standards are and where gaps in those standards may exist for the child, and are written with the goal of helping the child achieve grade level standards at a bare minimum.  Even if the expertise necessary does not exist within the district, it is incumbent on the team provide the right and proper resources to support this child’s needs, but note this is the ideal scenario to adhere to FAPE, but it a challenge to actually make happen.  Goals should be well written, challenging, but not overtly so, unique to the child’s needs (aka individualized instruction), and target grade level success within a short amount of time, ideally one year.  Measures for success should be repeatable, and mathematically quantifiable, not subjective.  If goals are falling short, or are being achieved quickly, the team should intervene to adjust appropriately instead of waiting a full year to discuss again. 

Is grade level achievement possible?

YES!  Dyslexia is not a handicap in the sense that the child can either a) never learn to read, or b) only learn to read at early elementary levels.  Dyslexia is simply a different way the brain processes information.  The goal for ALL dyslexic children should be at a bare minimum grade level achievement, but honestly it needs to be ahead of grade level, if the IQ supports the ability to advance beyond expectations.  School goals should be written to grade level expectations in all matters.  Anything less is a disservice to the child and not a reflection of their capabilities or intelligence.

How do I know for sure that my child is meeting their goals?

First, all goals should be mathematically quantifiable and not measured against subjective data.  Always ask for evidence on how the child is integrating their new knowledge into the everyday classroom and how that new knowledge is impacting their grades (it should be positive).  Annual measures via tools like the GORT and others can be graphed and measured to weigh true gains.  Also, with each goal report, have the school team show you the 4 out of 5 instances when reviewing the progress against the goals.  Anything less is not a full picture and can be misleading.

Can I call a meeting any time I need to even if it’s not yet been a year since the plan was implemented?

Yes.  Whether 504 or IDEA, you as the parent are the expert in your child.  If you have concerns, questions, or desire changes, you are free to call a meeting at any time.  It is important to note that a parent is not an equal member of the 504 team, but they are of the IEP team.

What are accommodations and why are they important?

An accommodation is a means of allowing the child access to grade level material by leveling the playing field.  Like you would provide glasses to someone who struggles seeing clearly, you would, as an example, give textbooks via audio to allow for ease of access instead of asking a struggling reader to labor unnecessarily through the texts just to complete an assignment.

For a list of accommodations that may help across various classes we have a comprehensive list here: https://www.thedyslexiainitiative.org/accommodations.

What is the difference in an accommodation and a modification?

An accommodation is a means of allowing the child access to grade level material by leveling the playing field.  Like you would provide glasses to someone who struggles seeing clearly, you would, as an example, give textbooks via audio to allow for ease of access instead of asking a struggling reader to labor unnecessarily through the texts just to complete an assignment.

A modification is a change to the curriculum, as an example, shortening a 100-question test to 40 questions, or 5 essay questions to 1 or 2 that may be done orally versus written.

People tend to use the words interchangeably, but they are two very different things.  For a list of accommodations that may help across various classes we have a comprehensive list here: https://www.thedyslexiainitiative.org/accommodations.

What is assistive technology?

Per IDEA, "an assistive technology device is defined as "any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of a child with a disability."  This means that it can be low tech, e.g. graphic organizers, or high tech, e.g. speech to text.

The key to AT is that it must truly meet the individualized and prescriptive needs of the individual with the need.  The severity of dyslexia as well as the combination of comorbid conditions, and what those specific conditions are, make each individual unique.  For the unique individual, some tools are just going to be better than others.

For more information please explore this link: https://www.thedyslexiainitiative.org/assistive-technology as well as our newsletters for “Alfabet Soup,” an article by OT, ATP Amy Traynor where she shares a vast amount of helpful information regarding assistive technology.  Our newsletter archive may be found here: https://www.thedyslexiainitiative.org/newsletter-archive. 

Should I let my child's school continue to use balanced literacy strategies with him / her in the regular classroom or tell them to stop?

As advocates what we would advise is no, you should not allow balanced literacy strategies to be utilized with your identified dyslexic child.  First, it’s critical to understand what curriculums are being used in the general education classroom, and that information is publicly available from all districts under the Freedom of Information Act; and second, it’s critical to understand, if the curriculum is balanced literacy based, that aspects of the program will contradict what your child is receiving in remediation.  Remediation will (should) truly teach the code of the language, while balanced literacy can (and usually does) utilize poor reading strategies like guessing at words and using pictures to guess as well.  We recommend, if your child is identified with dyslexia, to state that the child will only utilize the strategies provided in remediation and no conflicting strategies will be used with the child.  Balanced literacy strategies are difficult to undo once engrained, and you do not want to create confusion in the child’s mind about which strategies are right or wrong, but support what we know is scientifically sound.

What is due process? Is that my only recourse?

Under IDEA (2004), due process is a formal set of procedures for resolving conflicts between the school (or district) and parents (or the equivalent, as recognized by IDEA) regarding the child’s rights to special education related to “identification, evaluation, or educational placement”. In other words, due process ensures that children with disabilities and their parents are guaranteed rights to conflict resolution regarding the provision of a free appropriate public education (FAPE) (20 U.S.C. §§ 1414-1415).  We have an article that explains more here: https://www.thedyslexiainitiative.org/post/what-is-due-process-why-do-we-need-it

 

No, it is not your only recourse.  One can file a state administrative complaint, a complaint with the Office of Civil Rights (OCR), and / or a complaint with the Department of Justice (DOJ).

Is it true that if I file a complaint I'm just being difficult and not cooperative with the school?

No, this is not true.  This is a prevailing belief to keep parents from filing complaints.  Complaints are a necessary part of the process and a right of the parent.  A complaint may be met with a due process hearing filed by the district against the parent, if the district disagrees with the judgment or purpose behind the complaint, and while that is a risk, it is not a frequent occurrence.  Complaints are an effective tool to gain clarity and the necessary forward momentum for our children when the applicable law is not being properly applied.