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I think my child might have dyslexia; where do I start?

9/8/2015

17 Comments

 
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Thanks to public awareness campaigns and activism over the last few years, more and more people are becoming familiar with the term "dyslexia."  This is especially true here in Arizona, where -- for the first time ever -- a definition of "dyslexia" was just added to our state education code.

So when parents notice their kids are having trouble learning to read, many of us, with a simple internet search, can figure out whether our kids are showing some "red flags." If you've seen red flags and want to find out whether your child may have dyslexia, here's what we suggest. 

For those with extra money or great health insurance

If money is absolutely no object, consider getting a comprehensive neuropsychological evaluation from a private neuropsychologist who works with children.  The cost varies depending upon how much testing is needed, where you live, and other factors, but it's not uncommon for these to cost a few thousand dollars. Don't just choose anyone, though. Talk to others in your community and figure out who really understands dyslexia. There are many talented "neuropsychs" but that doesn't mean they all "get" dyslexia.  

Some insurance companies cover neuropsychological evaluations. Check your policy, and then see if someone good in your community is contracted with your insurance.  If you're located near a major children's hospital, you might be able to find someone really good there and get it covered. The down side is that there are often very long waiting lists to get in, so you might have to wait several months.

For everyone else

If you're not rolling in dough and can't use insurance, do not give up! You can get an equally good evaluation at no cost to you through the public school system, but it just might take a little longer and require some perseverance.  Here are the steps to follow:

1.  Request an evaluation


You are entitled to a free evaluation no matter where your child goes to school -- whether it's a public, private, or charter school, or you home school. The tricky part is to figure out who's responsible for doing the evaluation so you send the request to the right place.   The gist is this:
  • If your child is in public school, send the request to the school principal, and copy the head of special education for your school district.
  • If you home school, send the request to the public school your child is zoned to attend.
  • If your child attends private school, start by calling the school your child is zoned to attend if he/she went to public school and explain your situation.  They should tell you where to send your request.
  • If your child goes to a charter school, send the request to the head of the charter school and copy the director of special education for your state.

For those in Arizona, a great resource for model letters requesting an evaluation (as well as answers to many other important questions about your rights) is a self-advocacy guide published by the Arizona Center for Disability Law. 

2.  Do NOT take "no" for answer!

Sometimes parents get some push back when they request an evaluation through the public school system.  Do not fall for these common excuses:
  • We do not "recognize" dyslexia -- that's a "medical issue."
  • We will not conduct an evaluation because your child is not failing.
  • We will not conduct an evaluation because your child hasn't completed certain intervention programs we're trying.
  • We will not conduct an evaluation, because your child is in a gifted program.
  • We will not conduct an evaluation for special education, because all your child needs is a "504 plan" so she can get "accommodations."

If the school outright refuses to conduct the evaluation, you need to get in writing the reasons why they are refusing. The way you ask for this is by saying you want "Prior Written Notice." When they realize they have to put their reasons in writing, many times schools take a closer look and realize they should conduct the evaluation.  If you do actually receive "prior written notice," consider finding an advocate or an attorney to discuss possible next steps.

3.  Make sure the evaluation is complete.

The law says schools must evaluate in all areas of suspected disability.  This means schools must test for dyslexia if you have reason to suspect it. They may refuse to use the term "dyslexia." They may say they will only test for a "Specific Learning Disability" in reading, but that's okay. Don't get into a fight about the word.  Just make sure they test all the areas that are necessary to determine if a child actually has dyslexia. Here is a list of what a good dyslexia evaluation ought to include, according to the Dyslexia Training Institute:
  •  Phonological Processing
  • Oral Reading
  • Silent Reading
  • Single word reading
  • Processing speed/rapid naming
  • Spelling
  • Vocabulary
  • Writing sample
  • Evidence of cognitive ability
  • Review of school records
  • Thorough review of family and school history

If you disagree for any reason with the report you receive after the evaluation is complete, request an "IEE" -- an Independent Educational Evaluation.  This is basically a private evaluation that is paid for by the school district.  You are entitled to this if you disagree with the evaluation, or if you feel it is incomplete.  The self-advocacy guide walks you through the steps for doing this (pp. 97-98).

4.  Determine whether your child is "eligible" for special education

Request a copy of the "criteria" the school district or charter school uses for determining whether a child has a "Specific Learning Disability."  You don't need the federal criteria -- you can find that here.  But the federal rules required states to adopt their own, additional criteria, and you need to find out what that is for your state. Here in Arizona, the state decided to allow local school districts to adopt their own criteria, so it's quite possible a child could be found eligible in one district but not in another! Be persistent about getting this if for no other reason than to let your school know that you are going to pay close attention!

If you are told your child is not eligible for special education, ask the school to explain
why in writing ("Prior Written Notice"), and then consider how you want to proceed.  

5.  My child is "eligible." Now what?

That needs to be the subject of another blog, or perhaps a book!

Very generally speaking, for those who attend public or charter schools, your child can receive special education in school. If your child attends private school, or if you home school, you may be entitled to some limited support from the public school system, but not nearly as much as if your child attends a public or charter school. You may want to begin researching tutoring programs in your community, or programs that help you teach your own child.  Use your new dyslexia evaluation as a road map for determining what types of interventions your child needs to make progress.

Most of all, if you confirm your child has dyslexia, do not despair! Grieve a bit, for sure -- your child has some challenges ahead, and so do you.  But you are not alone. Dyslexia is said to affect nearly 1 in 5 children.  We are many, so join our community.   Together, we celebrate our children's strengths and support one another in navigating the more difficult parts of this journey.














17 Comments
Eddie Carron
9/12/2015 11:02:59 am

You may be aware of the Perceptual Learning movement resurrected by Dr Phil Kellman at @UCLA. His ideas are the basis of the highly successful answer for dyslexics of any age currently being pioneered in the UK.

See it your self free at
In a secondary school at http://www.youtube.com/watch?v=d-wlbCFVzto
In an independent school for dyslexic children at http://www.youtube.com/watch?v=vBDmOYllL04
In an Australian primary school at http://www.youtube.com/watch?v=oCV1Ql-x8xs

Try it free at www.perceptualliteracy.com/trial

Reply
Jennifer
9/14/2015 06:56:28 am

A third option--if you have some money, but aren't rolling in it, is to have your child evaluated by a Speech Therapist. These evaluations are usually hundreds as opposed to thousands of dollars.

This can be a great place to start, especially with "gifted" kids who may be twice exceptional.
Schools would not evaluate my children because they were performing at or above grade level--yet they (and we) knew something wasn't right. Having the identification (aka diagnosis) means the school must take steps.

Reply
Cheri
9/14/2015 04:20:28 pm

A certified Reading Specialist is another great resource for administering the assessment. The Wilson Reading Program or other reading programs based on Orton Gillingham principles work best for dyslexic students.

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brandy sweeney link
3/20/2016 01:37:11 am

my daughter has been tested in another state and was showed to need help but then we moved to az. and they said she dont score high enough for it here . she is having so many problems shes in 2nd grade and already dont want to go to school i need help can she be tested again even though she was in the state of maine already??

Reply
Lara Bruner link
7/16/2016 05:21:56 pm

Contact Raising Special Kids or acdl.com (AZ Center for Disability Law). The details can get tricky and your child would greatly benefit from these organizations.

Reply
Liezl
8/22/2016 09:53:19 am

The school my son goes to wants me to have my insurance cover it since it is more of a medical diagnosis. We have a high deductible, so using insurance is not an option. How should I respond?

Reply
Marti
12/21/2016 03:26:10 pm

I have been looking and I think the school can put him in a 504 plan without a diagnosis

Reply
Marti
12/21/2016 03:25:09 pm

I have finally after 3 years of fighting for my son, Have his teachers and reading specialist leaning toward Dyslexia. The reading specialist has done her own testing. My son scored well within range for Dyslexia. The school says we need a medical diagnosis for a 504 plan. From what I can see she can put him in a 504 plan. Where do I find this in writing? Not just a website. A school website or US Dept of Ed? I cant afford thousands for private evaluations.

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Kari
2/7/2017 06:06:07 pm

I would recommend accommodations be met through an IEP rather than a 504. If he qualifies "well within range" according to their testing, why would they not develop an IEP for specific interventions and instruction and include accommodations. A 504 will only provide for accommodations. (I understand the struggle.)

Reply
Grieving and Frustrated
3/1/2017 11:15:52 am

It gets worse in high school. There is resource support, to be sure, but that's assuming that your child is self-assured and confident enough to make use of it. What if he's 15 years old and still has trouble spelling 3 and 4 letter words and can't even copy from the board or computer? How many people really believe he'd be strong enough to ask in front of all his peers, "how do you spell 'ride'? Wait, go slower!" Really? Kids laugh at each other for the slightest hair out of place. Have we adults forgotten what it's like to expose our deepest vulnerabilities and be mocked and taunted about them? For a child with severe dyslexia who needs an adult sitting next to him to hold a finger over the text he needs to read or copy there is no help in public school, there is no help from government. What he needs is one-to-one, full-time instruction, not mere tutoring. Good luck with that because if both parents need to work and can't afford an expensive private school, that's it, he's out of luck.

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Jane Gramenz link
8/12/2017 11:54:56 am

I just moved here from Oregon, so I am unsure about the intervention programs here in AZ; however, only 1 in 10 with dyslexia will qualify for special education nationally. After I've screened a person for dyslexia, I do NOT recommend getting an IEP that includes being pulled out of class UNLESS you know the intervention the school is using is research proven. At this point, an Orton-Gillingham based approach is the only way to go. Other methodology such as Structured Word Inquiry is also proving successful for some, but as far as I know is not research proven. I have yet to see a public school special education program (at least in Oregon) that will appropriately teach those with dyslexia. You will need private tutoring in an Orton-Gillingham based approach (or SWI) best served in a 1:1 setting. Until teachers are trained in this kind of intervention, students will be pulled and make "some gains" but they need to actually catch up to their peers. Don't settle for "look, there's some growth". If you have a fourth grader who is behind, he/she will be pulled to work on fluency because that is the fourth grade expectation; but if the child can't actually decode properly, they will just be forced to guess and stumble through reading at a faster rate. How frustrating!
Ok, I'll stop now. I just want to caution parents that getting an IEP is not necessarily the answer; the appropriate intervention is, and you'll likely have to look outside the school for that.
-Mom of a smart dyslexic daughter, and a Certified Teacher & Dyslexic Specialist

Reply
Shana
9/22/2017 06:53:38 pm

Where can I find the correct Orton Gillingham materials to help my 3rd grader?

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Jane Gramenz link
9/23/2017 11:12:03 am

i suggest going to www.brightsilutions.us
Look for OG programs. Or just google OG programs. If you want to tutor your child yourself, the best program the Barton Reading and Spelling System. A lot of programs require either schoolwide training or practicum. So search for OG approach systems, OG tutors or go to the Barton website to find local or remote tutors.

Natalie Preciado
5/15/2018 05:08:07 am

My daughter is SLD , in 1 grade they tested sign of dyslexia showed they said at 3 yr evaluation if still there special test needed to be done , well they did not want to , wanted to do s REED , I said No we went mediation , they failed again teacher do not modify instruction , since 1 grade , in a small town no Atty or resources , so now I got to represent Jessica by myself , I'm gonna do the best I can but I hope they don't win in technically of the law , I'm not a lawyer they got money.. if u can please help In Clovis NM

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Staci
10/3/2018 12:27:54 am

Does your daughter have Medicaid? And you can request the School send her to someone else to be tested

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Kayla link
7/16/2018 12:38:18 am

My sister thinks that her child has a mental condition and she wants to make sure. It was explained here that she should request an evaluation of her child's abilities. Moreover, it's highly recommended to go to health professionals when planning to try neurophysical testing.

Reply
Ava link
4/25/2019 09:01:09 pm

Thank you Jen for posting this!

Reply



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    Author

    Jenifer Kasten
    Parent of child with dyslexia
    DDAZ Leader of Advocacy and Public Policy

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