How important is a formal dyslexia diagnosis?

[LifeLovePassion]

I am suspecting dyslexia with my dd1 (age 6, 1st grade). We had a speaker at our homeschool support group who was talking about dyslexia, (she is trained in Orton-Gillingham and is a private tutor specializing with working with kids with dyslexia). I saw alot of lightbulbs while she was speaking. She gave us a checklist, it said to look into it if you could check off 3. I could check 7 boxes and there were maybe 2 more (not yet applicable since she is younger). So, I called the ped and she said dyslexia is diagnosed by the schools. I called her Speech teacher at the school and after checking she said they don't test for it either. DD is up for her 3 year evaluation, which is a full evaluation and she said they would look at reading too. I'm not sure what that'll get us, but that's where we stand.

 

So, do I pursue it further medically? Just skip a diagnosis and self diagnose it? I'm at a loss now and don't know what my next step should be.

 

School went well for our first quarter, then she totally has been in a funk since. Not wanting to read, write or do math. I've let off those and we've been doing more read-alouds and other learning things in the meantime. This month will be focused on advent and I want to pick up reading again in January but don't know what we should do for it yet.

[CatholicMom]

Not sure, but I'm in the same boat (see my recent post). My son (9 yrs) clearly is dyslexic, IMO. So in a sense I don't need a test to tell me he is because it's obvious at this point. But I also would like to have access and guidance in terms of therapy, tutoring, or whatever might keep him from falling further behind.

 

And, to boot, his little sister who is 5, recently spelled her entire first name backwards (the mirror image... letters reversed and the whole name reversed). She has also had a really hard time remembering the names of her letters, and is now having a terrible time counting to 20. :svengo:

[FairProspects]

It is critical if you think you may want to get College Board accommodations some day (ACT, SAT, AP). It also helps with access to lots of other technological tools like audiobooks, pens, etc.

[LifeLovePassion]

so who gives the diagnosis?

[Heathermomster]

My local Scottish Rite Learning Center gave the initial dyslexia diagnosis. A private PhD Neuropsychologist confirmed the dyslexia and added the dyscalculia /dysgraphia gifted diagnosis. The NP felt DS should be homeschooled.

 

The books Overcoming Dyslexia by Shaywitz and The Dyslexic Advantage by the Eides helped tremendously with developing a plan.

[Tokyomarie]

I think this might be a good time to plug, once again, one of my favorite websites on dyslexia: DyslexiaHelp, sponsored by University of Michigan. It has tons of information about dyslexia, including information about good practices in evaluation & "treatment" of dyslexia. You can find articles written for parents, as well as ones for professionals which elaborate on these topics.

 

One of the issues with schools & labels is that schools use the term Specific Learning Disability (SLD) to refer to any disability that impacts reading, writing, or math. That is the label used in federal legislation affecting special education (IDEA 2004). You may get a label of Reading Disorder or Disorder of Written Expression from a school psychologist who uses the DSM-IV, which is a book detailing mental health and developmental disorders & which has diagnosis codes used by insurances. However, dyslexia is not currently a label used in either document- though it will be discussed in the new DSM-V.

 

I will shout it from the rooftops until I die: I wish I had gotten a formal dyslexia/dysgraphia diagnosis early in my son's educational career. It would have opened more doors for us for private support services, would have legitimized- in his mind and in the minds of others- his difficulty with reading and writing, and would have saved years of faltering self-esteem and chronic poor behaviors stemming from feeling incompetent. Even though my son was spared a lot of the hearteache that dyslexic kids in classrooms have to deal with and I was able to modify his curriculum as needed, he still struggled way more than he should have had to. That's not to say he didn't have good teaching. The professionals have formally recognized me in their reports for the positive role I played in helping him get to where he is today. That doesn't cover for the fact that he could have done better in some areas if I had been able to get specific help from professionals in the field.

 

The elementary school years are a key period in a child's academic development. Children who get help early on will usually have fewer struggles in the high school years and will develop an understanding of their learning needs so as to be better prepared to advocate for themselves in high school and college. My son is doing well enough, but he could be doing better. He also could be doing much better at self-acceptance of his learning needs and at self-advocacy. However, we are playing catch up on that one because his needs were not formally recognized until he was 15yo.

 

Reading through the DyslexiaHelp website will strengthen your foundation for understanding dyslexia and related learning challenges. This really will start to get you up to speed on how an evaluation for reading & writing difficulties is done and gives good information about teaching dyslexic students.

 

A couple of good books to read are The Mislabeled Child, by Brock & Fernette Eide and Overcoming Dyslexia by Sally Shaywitz. The latter book is a bit dense. I wouldn't start with that one. The first book by the Eides is very readable and addresses lots of aspects of learning challenges.

[Tokyomarie]

so who gives the diagnosis?

 

My son was first diagnosed by a private practice PhD neuropsychologist. It was later reaffirmed by a psychologist who does testing for our son's school. She added the formal dysgraphia diagnosis, though test data in his first evaluation supported the dysgraphia and the NP listed all the pertinent accommodations related to dysgraphia.

[CatholicMom]

So should we start by looking for a Neuropsychologist, or a psychologist? Or does it not matter?

[LifeLovePassion]

Thank you, Marie. that is helpful info. I may look for a neuropsychologist on my own. It's all so new/unknown so I am sure to have more questions.

[Tokyomarie]

Thank you, Marie. that is helpful info. I may look for a neuropsychologist on my own. It's all so new/unknown so I am sure to have more questions.

 

If your daughter is already getting speech services at the school and is coming up for her triennial, you might ask a representative team member for more detail on what a "full" evaluation entails. Ask for specific test names, then compare them against the tests listed at the DyslexiaHelp website. Ask if they will be doing any tests of phonological awareness and rapid naming- a common test which covers both items is the CTOPP. Weaknesses in these skills are highly indicative of a reading disability. Also make sure they use measures of reading decoding (sounding out words) and encoding (spelling), as well as reading fluency and comprehension.

 

Since your daughter is still young, there may not yet be a huge gap between her actual reading skill and what is expected. This is why doing a test like the CTOPP is very important- significant weaknesses in phonological awareness and rapid naming are predictive of future difficulty in reading.

 

If you see evidence that these kinds of tests will be done for the triennial- and as a member of the IEP team, you can request that measures of these skills be done- you could choose to sit tight and wait on a private evaluation. The important part of this evaluation is not so much that you get the specific label of dyslexia, but that you get all the appropriate measures that will help determine whether there is a reading disability.

[Lecka]

Thanks for the Dyslexia Help website recommendation! It is very good :)

[LifeLovePassion]

I spoke with her SLP and she is meeting today to get her on the schedule for testing, so that it (hopefully) gets done before her IEP date. She was unsure of the tests they would use but said i have to sign off and give permission so I should know ahead of time. I will definately be coming back to this thread after I get that info so I can compare and ask questions.

[Guest KT Hart]

I recommend this book for you. It is packed full of valuable information for parents and will tell you what a formal diagnosis should include. PARENTING A STRUGGLING READER by Susan L. Hall and Louisa C. Moats, Ed. D. You can find it on Amazon. I suspect my daughter (7) has dyslexia and this book answered a lot of my questions. As a result of my suspecting my daughter had dyslexia, I started developing apps for children with dyslexia. The iPad is great multisensory teaching tool for kids.

[Lecka]

I like that book also. They have also co-authored Straight Talk about Reading, also available at my library.

[Reya]

If you were homeschooling and planned to remedy and not accommodate, then no. If you are in PS, then yes, get testing through the district.

 

I am a huge believer in remediation. I tutored a kid with a tested IQ below 50 and severe, pervasive disabilities and got him reading at a first grade level at age 5. My mother is dyslexic, I am dyslexic, and my son is dyslexic, and we all read FAR about grade/age level--in fact, both my mother and I had perfect verbal SAT scores, back when that meant something. I sincerely believe that at least 99% of children can read at or above grade level with proper support.

[LifeLovePassion]

I got her re-evaluation paperwork. 2 of the tests include the Kaufman-Assessment Battery for Children (2nd edition) and Woodcock-Johnson III tests of achievement. Both are listed on the Dyslexia Help test site so this is good (I think). Another test they will do that isn't on the Dyslexia Help site is the Test of Early Reading Ability (3rd edition). I have to sign off on the list of testing and return it and then they have 30 school days to do the testing.

[mhaddon]

I am trying to figure out where to get a formal diagnosis. I talked to the school and she seemed to dismiss me :( I am going to look into it more after we start vision therapy. I know that is part of his problem, but not the full extent.

[RamonaQ]

I am trying to figure out where to get a formal diagnosis. I talked to the school and she seemed to dismiss me :( I am going to look into it more after we start vision therapy. I know that is part of his problem, but not the full extent.

 

 

By law, the school can not dismiss you. If you submit a letter requesting testing and evaluation, they must comply....wether you are an enrolled public school student, homeschooling or private schooling.

[NittanyJen]

Absolutely get a real diagnosis and not a mommy dx.

 

What looks like dyslexia might not be anything; it might be dyslexia, or it could be something else entirely. You could waste time and cash on unneeded therapies, on the wrong therapies and interventions, or just not find the ones most applicable to your child. Even in a homeschool setting, our kids deserve to have roadblocks removed or properly adjusted, not just band-aided or incompletely dealt with. And as a PP pointed out, a paper trail of official history is important or later if accommodations are needed in college or for testing services. The Mommy Trail won't cut it.

 

 

[LifeLovePassion]

I guess the biggest problem will be getting a diagnosis for it. The school said they don't test for it. Her IEP review is due to Autism-like concerns, but the school called it an "educational diagnosis". The ped said the school tests for it, so I am getting a big run around. I don't know who to call next or if I should just wait until after her 3 year IEP testing/review process is through...hopefully done in Jan or Feb.

[FairProspects]

If they give you the run around, you may have to go to private testing with a neuropsych or ed. psych after the school testing.

[Samiam]

See if the school will test for learning issues or delays. Leave out the word dyslexia. We just went through an initial testing with my DS9. The psychologist met with me afterwards, and while could not give me an eval until she went though the findings, she did say that she does not diagnose dyslexia because that is a medical condition, not a learning disability....I know, completely shocking and confusing. Nonetheless, I did just get a call frm her today, testing was about a month ago, telling me that he scored low enough the would like to do a full psych educational testing on him. Not sure what it all means, waiting for papers to come in mail so I can sit and read it.