To test or not to test...

[lexi]

My son is a struggling reader at nearly 9. Reading has always been a huge challenge for him. We have tried a few programs like Logic of English but have settled on AAR. He has made very slow but somewhat steady progress. We completed Level 3 but stared it again because he's still struggling hugely.

 

So, do I have him tested for dyslexia or another learning challenge and get an evaluation? Or do I keep slowly moving forward?

 

I'm leaning toward an evaluation because I'm just so tired and discouraged.

 

Here are things he does:

Guesses at words

Has a hard time breaking a word into syllables to sound it out

Forgets the first syllable as he sounds out the second one. Then forgets the second one as he goes back to the first syllable. And found and round we go.

Loses his place when he reads (yes I use my finger or reading ruler. Doesn't always help).

Reads common short words incorrectly - "and" instead of "the"

Skips over words while reading

Sees letters and sounds in words that are not there. "Blown" can become "brown"

Adds wrong endings to words - reads a word with an "er" ending as a word with an "ing" ending

 

I try to encourage and correct and help. I model how to sound out words. I use my fingers to cover them up and move slowly across the page. I help and help and help.

 

But I'm feeling totally discouraged. And I know he is too. I want to help him. His younger sister is blowing past him in reading. And his 5 year old sister is already starting to read. I don't compare but he notices.

 

He's great at math and numbers. But reading is not happening. And he's just as bad at spelling.

 

I have no experience with dyslexia and no real knowledge of it either. Does it sound like he has a problem or that he's just slow to learn to read? Should I pursue evaluations? And if I do, where should I look to have him tested? I feel clueless right now.

[maize]

Yes, I would pursue evaluations.

 

At this point your son is likely aware that he is not reading as well as others his age; sometimes kids become discouraged and start to think of themselves as dumb. It is so much better to have information about the underlying challenges and to understand that brains are all different, with unique strengths and weaknesses. Individuals with dyslexia often have significant strengths in other areas, and evaluations sometimes help to turn these up as well.

Edited October 31, 2016 by maize

[maize]

The Dyslexic Advantage is a good book to read.

[lexi]

So how do I pursue testing? Where do I go?

 

I don't think I can go to our local school.

[Code Lyoko]

I agree, it is time for evaluations.  Don't keep waiting like I did.  Get answers.  Look for a neuropsychologist that does a full battery of tests, including for dyslexia.  Dyslexia is often comorbid with other issues AND underlying strengths that the issues may be masking.  You need a fuller picture.  Try to find someone that is not anti-homeschooling.

 

I suggest also reading The Dyslexic Advantage and The Mislabeled Child by Brock and Fernette Eide and Overcoming Dyslexia by Sally Shaywitz for additional information.  Keep in mind that some of the information may now be out of date but those three books can give you a lot of information.  I have found them invaluable.

 

And you might look at other threads here on the LC board for the process others have gone through.

[Lecka]

It sounds like a problem to me, too.

 

Check out the Barton reading website. It is a good option for a reading program.

[VinNY]

Neuropsychological Evaluation would be your best bet. I am on my third (out of 8 kids ) with a reading challenge. Evaluation lets you know what their glitch is and the best way to remediate.  Recipe for Reading is an inexpensive manual (Orton Gillingham) that breaks the reading process down for struggling readers. I combine that with I See SAM readers for fluency.  I moved to REWARDS to help with  multisyllabic word reading strategies and Six Minute Solution for fluency.  One of my kids needed LiPs. 

[PeterPan]

I'm all for good psych evals and have both of my kids eval'd.  However I'll point out that there could be some other explanations or *additional* things going on besides dyslexia.  You know you've got working memory issues.  That part is glaringly obvious. However my dd had trouble with tracking and breaking words into syllables, and she had developmental vision problems, not dyslexia.

 

If you get his eyes checked by a developmental optometrist, it will be inexpensive (compared to a psych eval!) and something you can get done while you wait for the psych.  Good psychs are usually booked out 3-6 months.  So I would get his eyes checked.  The place we use does a regular exam for $60-100 and will *screen* for developmental vision problems while you're there.  Then they have a full exam they can do (2-3 hours, more money).  So I would at least start with that basic exam, but getting it done by a developmental optometrist and asking them to screen him.

 

I personally would at least want a CTOPP done.  It just depends on your family history and how strongly you feel about the dyslexia question.  If you have a tutor who can run the CTOPP, that would tell you if it's useful to go on to the psych for the full eval.  A neuropsych is 2-3X as much as a general psych and overkill for ADHD alone.  So if it's ADHD + vision problems, the CTOPP would give you the info not to bother with the np and you'd save some money.  

 

Or just go directly to the neuropsych.  :)

 

See what you've got access to in your area, what your insurance will cover, what you can afford.  I'm trying to give you some options, because it can be really overwhelming to want to help your kid and get told the ONLY option is a $3-5 neuropsych eval.  It's not the only option.  There are more options and you'll be able to find one you can make happen.  Learning Ally has some lists you can look at.  The people place themselves on there, but still it's a start for finding the resources and the good places in your area for evals.  Sometimes an area will have a psych who is really "the guy" or a tutor who is "the tutor" people like for dyslexia.  So try to connect with the resources in your area.  Good evals can be gotten multiple ways.  I would definitely go multi-pronged though.  Get his vision screened, because some of that *could* be vision.  

[PeterPan]

You have him listening to audiobooks right now?  1-3 hours a day?  If he's not, definitely bump this up.  When reading is not working, you REALLY want that input.  Get him the new Kindle HD8, if you don't have a device, and load that sucker up!  My ds listens for several hours a day, and it gives him this phenomenal vocabulary that covers his butt on decoding.  He "reads" with comprehension multiple grades above his decoding, and it's because of that crazy high vocabulary from all the audiobooks.  Ditto for my dd.  She never did start sounding out words till we did vision therapy at age 11, even though she read.  We did lots and lots and lots of audiobooks.

 

So no matter what is going on, you can't go wrong with audiobooks.   :)

 

It's great that you're making the move on getting evals!  We're here if you need to talk through funding or work through options or whatever.  It can be really frustrating translating ideas from the board to real life in your real town where you really live.  And it's sort of a not-fun process, feeling like they're dissecting your kid.  But when you come to the OTHER SIDE, it will have been worth it.  

Edited October 31, 2016 by OhElizabeth

[PeterPan]

Have you done the Barton pre-test yet?  It's NOT a dyslexia test, but it may give you useful information.

https://bartonreading.com/students/#ss

[lexi]

Thanks. I'm going to read back over all the suggestions. I'm feeling overwhelmed. And today I learned our insurance pays for none of the testing. Awesome! Ugh.

 

And yes, my son lives on audiobooks. He has his own iPod and listens to books a ton. I might need to try the kindle thing. We don't have one of those.

 

He's a bright kid and I hate that reading is so hard for him. I feel super discouraged!

[PeterPan]

Well it's a bummer that your insurance won't pay, but look around, find your options.  You'll be able to make SOMETHING happen.  

 

Places to check for psych suggestions:

-other parents of dyslexics

-Learning Ally tutor/resource list

-Barton list

-your ped referral lists (though may be hospital psychs and more $$)

-dyslexia school

-OG certified tutors

-Hoagies' Gifted 

 

Also, don't know if you know this, but the ps is required, BY FEDERAL LAW, to do these evals for you if you make a written request.  You simply hand them a written request (or email!) stating that you suspect learning disabilities and request that they do evals.  This starts the legal timeline, and they'll do it.  Sometimes the ps will actually do a really good job!  Sometimes, it's true, they're less than helpful or leave you even more confused than when you started.  See technically they're asking whether his scores are SO LOW (or so discrepant) that they would be required to provide specialized services (an IEP) if he were in the ps.  So you can have dyslexia and NOT qualify for an IEP in the school if you're already doing ok academically.  So they aren't technically asking the same question you are, because they're determining whether you need services for the disability (which you may or may not get without enrolling, depending on your state's laws) while you're asking what the disability is.  But they CAN run the full shibang.  They can run all the same tests, pretty much, that my $$$$$$$$ neuropsych ran.  They just are not helpful at interpreting or applying them and sometimes screw up big time.  But if that's your budget (free), they're there.  You'll definitely get something done.  Federal law mandates that they do it.

[PeterPan]

That's great that he's doing audiobooks!  Since he has his own ipod, I would wait on further tech till you see what all is going on.  He might want something different.

 

It's definitely worth your time to do the Barton pre-test if you have a chance.  Link was above.  :)

[Storygirl]

I'm going to add a couple of yes's:

 

Yes, it sounds like evaluations would be helpful. Your list of issues is just about the same list I had for DD11, and when she was evaluated at age 10, we got a diagnosis of dyslexia from a neuropsychologist.

 

Yes, have her eyes checked by a COVD optometrist. We did so, and vision was not a problem for DD, and we were glad to rule it out.

 

Yes, the school can run testing for free, and yes, they are mostly terrible about interpreting the scores, because they don't actually diagnose things like dyslexia. They just determine if there is a reading disability that they have to service at the school. But the tests they run can be helpful, and they can tell you if he has a reading disability by their standards.

 

By the way, there are some states that offer scholarships to students with disabilities who are not being educated in the public schools. So money may be available for tutoring, etc. You may have to do some research to see if your state is one of them. Our state is, and I had absolutely no clue that this kind of help existed or how to get it. Sometimes you don't know until you ask, and sometimes you don't know what to ask about.

 

I didn't know how to get a dyslexia diagnosis for DD, even though I was sure she had it. An educational psychologist or a neuropsychologist can run the testing. As mentioned above, a lot of testing can give you information, but for phonological processing (the main glitch with dyslexia), you want to make sure to have a CTOPP run. If you have a private dyslexia school anywhere near you, they might do free reading screenings, so that is another place to look. But you would have to ask whether the screenings include the CTOPP.

 

:grouphug:  I know just how you feel. We struggled and struggled, and I tried to figure out how one would even have dyslexia diagnosed. We finally got it done when she was newly ten.

[*****]

By the way, there are some states that offer scholarships to students with disabilities who are not being educated in the public schools. So money may be available for tutoring, etc. You may have to do some research to see if your state is one of them. Our state is, and I had absolutely no clue that this kind of help existed or how to get it. Sometimes you don't know until you ask, and sometimes you don't know what to ask about.

 

 

In regards to the above quote, could you give me some idea of how to begin this type of search?        I know of a girl in a private school setting who's mother was in to drugs. This child is getting speech therapy. She is a good reader, but has poor memorization skills, so she gets speech to help with following directions...her reading is lower because she has difficulty retrieving information for comprehension.  

 

She has never been tested for special education, but we are wondering whether she should be, even though she would not be serviced at the private school. She is very immature for her age. She has a lot of holes in her education and basic knowledge.  I have concerns for her as she gets older and is out of school. 

Any advice please?

[PeterPan]

In regards to the above quote, could you give me some idea of how to begin this type of search?        I know of a girl in a private school setting who's mother was in to drugs. This child is getting speech therapy. She is a good reader, but has poor memorization skills, so she gets speech to help with following directions...her reading is lower because she has difficulty retrieving information for comprehension.  

 

She has never been tested for special education, but we are wondering whether she should be, even though she would not be serviced at the private school. She is very immature for her age. She has a lot of holes in her education and basic knowledge.  I have concerns for her as she gets older and is out of school. 

Any advice please?

 

Federal law requires ALL ps to identify students with disabilities in their district, irrespective of where/how the child is schooled.  The mother has the legal right to make a written request to the ps, following the law in her state, and get evals done.  The law will spell out what district is required to do the testing.  For instance, it could be district of residence or the district the school is in.  Sometimes it gets complicated.  You go to your state's dept of education website and search to find the laws.

 

Federal law does *not* require the ps to provide services to all children in their district when those kids are not enrolled in the ps, however *state* laws vary on that.  So, again, you go to your dept of ed to see what your state requires.  Some say no, some say yes, and some say it's up to the school.  It depends on the state.  

 

Scholarships, again, go to your state dept of ed website.  

 

Yes, a dc who has had prenatal exposures like that could have microcephaly, learning disabilities, autism, on and on.  Sometimes it takes a while for everything to become obvious, and in very complex cases the ps evals will not be adequate.  If the dc has coverage (through medicaid, the parent's insurance, whatever), the dc would get more complete evals going through a children's hospital.  They'll be more thorough evals than what the ps will do and generate a report with enough weight to help the parent advocate for their dc.  Ideally, that's what they'd try to get access to.  Then, when they have the private evals, they can decide what changes they want to make in their schooling, what services they're trying to get, etc.

[*****]

Thank you, OhElizabeth!  I will follow through on that!