Learning Disabilities - rely on school or go with private testing?

[lisac77]

I suspect my 6.5-year-old son who is in first grade may have dyslexia or a related disability. He's struggling really hard with literacy in school right now and instead of seeing that gap start to close, I'm actually seeing it getting worse as the work gets harder and he gets more frustrated. He is currently about a year behind in reading, writing, and spelling while maintaining grade level or above performance in every other area.

His teacher is totally unconvinced that he needs any further evaluation or special help. I've been trying to get her on my side (since she will be doing part of the evaluation and implementing the IEP or 504 if necessary) but she keeps putting me off and delaying setting up conferences. It's really driving me nuts.

Basically I've wasted half a year waiting for the teacher to come around, and I am ready to go over her head to get some appropriate help for my son. If I submit a request in writing the school district has to respond within 60 days, and at that point they will do an evalution to see if he qualifies to be referred for further testing. I see a lot of foot dragging potential in this process, which it seems like they could easily extend into next school year if they time it right.

My other option is to pay for a private evaluation. They run about $1200 and the centers that specialize in them will provide support for getting accomodations in the classroom if they find an issue that needs addressing.

Anyone have any experience with private vs. school testing?

[LauraLoo]

We've done both private and school testing.

Speaking in general terms and you probably already know this, the advantages to school testing are that it's free and once they know the results, they typically have a plan to put in place. Disadvantages are that it's a lengthy process and if you don't agree to the results or course of treatment or what testing is necessary, it becomes even a lengthier process. (BTDT.)

Private testing can be costly, depending on your insurance. It can also take some time to get in for an appointment. It can also be more comprehensive and yield a better overall assessment and is less likely to give you a misdiagnosis. Ideally, private testing would also give you suggestions for treatment that are non-biased (and not just what the school offers as the plan) and provide documentation to the school for needed resources.

Do you know if your school will test for dyslexia? Ours did not (not seen as a medical condition, so would not specifically test for it,) so private testing may be your only route. Because I went down the dyslexia path with ds, I want to suggest that before you do any specific dyslexia testing that you consider doing a vision exam by a developmental optometrist. This is not your typical 20/20 vision exam - a dev. optometrist will check how the eyes are functioning and communicating to the brain, not just "can you read this line." And you aren't going to get this through a school. The link below will provide more info. - it's a good place to start when considering dyslexia.

http://covd.org/Home/AboutVisionLear...2/Default.aspx

All in all, the private testing that we've done with ds was far superior to the testing that the school provided. Unfortunately, schools are under a lot of pressure to keep costs down and sometimes this trickles down to not providing the best testing in a timely manner.

GL!

[karne]

We've gone the route of school testing for LD's, but I wouldn't rule out private if we feel we need it down the road.

Your son is in first grade and he is a year behind in reading? I'm just wondering about this a bit. Not to minimize your concerns, but there is a very wide range in reading abilities at this age. Are there certain lacking skills, ie phonemic awareness, that lead you to suspect dyslexia?

It seems that you could ask for the school system to test and go through that process, while at the same time seeking some educational support for your son. If he is truly that far behind his peers (basically at Kindy level), it seems that the school would be wanting to provide some additional support. This is often done before a child qualifies for special ed-ie Reading Recovery, pull out sessions for language/reading support, educational support in general). Sometimes part of qualifying for special ed involves documenting that additional support in the classroom hasn't produced growth in the area of concern. Has any of this been done yet?

[Linda on the move]

Originally Posted by karne

Your son is in first grade and he is a year behind in reading? I'm just wondering about this a bit. Not to minimize your concerns, but there is a very wide range in reading abilities at this age.

That was my thought, too. Neither of my kids were reading much at that age. One is gifted and one has mild SNs, but both now read on college level and they are in middle school.

A lot of 6 years olds don't read well and the current push to make them to do isn't based on what we know about how their little brains develop.

Why do you believe this is an LD rather than a simple readiness issue that will resolve on its own?

[lisac77]

Originally Posted by Linda on the move

That was my thought, too. Neither of my kids were reading much at that age. One is gifted and one has mild SNs, but both now read on college level and they are in middle school.

A lot of 6 years olds don't read well and the current push to make them to do isn't based on what we know about how their little brains develop.

Why do you believe this is an LD rather than a simple readiness issue that will resolve on its own?

He has no phonemic awareness. None. He can't remember series of sounds, nor can he pick a rhyming word out of a series of words (i.e. I say "frog" "bed" "dog" and ask him which does not rhyme, and he has no idea).

With dyslexia, the absolute worst thing to do is play the "wait and see" game. If he had all these phonemic skills and was just not reading that well, I'd be perfectly happy to let him develop and not worry about it. Unfortunately he's got some big, red flashing markers of dyslexia. The school screens for phonemic awareness at the beginning and end of each year, and he's never even made it onto their chart - he fails the test in the first module.

[lisac77]

Originally Posted by LauraLoo

We've done both private and school testing.

Speaking in general terms and you probably already know this, the advantages to school testing are that it's free and once they know the results, they typically have a plan to put in place. Disadvantages are that it's a lengthy process and if you don't agree to the results or course of treatment or what testing is necessary, it becomes even a lengthier process. (BTDT.)

Private testing can be costly, depending on your insurance. It can also take some time to get in for an appointment. It can also be more comprehensive and yield a better overall assessment and is less likely to give you a misdiagnosis. Ideally, private testing would also give you suggestions for treatment that are non-biased (and not just what the school offers as the plan) and provide documentation to the school for needed resources.

Do you know if your school will test for dyslexia? Ours did not (not seen as a medical condition, so would not specifically test for it,) so private testing may be your only route. Because I went down the dyslexia path with ds, I want to suggest that before you do any specific dyslexia testing that you consider doing a vision exam by a developmental optometrist. This is not your typical 20/20 vision exam - a dev. optometrist will check how the eyes are functioning and communicating to the brain, not just "can you read this line." And you aren't going to get this through a school. The link below will provide more info. - it's a good place to start when considering dyslexia.

http://covd.org/Home/AboutVisionLear...2/Default.aspx

All in all, the private testing that we've done with ds was far superior to the testing that the school provided. Unfortunately, schools are under a lot of pressure to keep costs down and sometimes this trickles down to not providing the best testing in a timely manner.

GL!

I'm not sure, that's what I've been trying to find out. In Texas there are specific laws pertaining to dyslexic children. However, nothing that I can find points to a specific test for dyslexia. As far as I can tell, they screen them and then put them through their standard battery of educational testing which may or may not be the proper battery of tests for a child with dyslexia.

I think I will call my insurance company and see if they will cover the testing. I think my son's dyslexia may be related to his ear infections as a toddler/young child, so that may qualify as a medical issue.

[karne]

Not meaning to be pesky, but I'm still wondering what interventions the school has tried, esp. if they're screening for phonemic awareness? It seems like something's not adding up, esp. if the teacher isn't expressing concern.

My oldest is dyslexic, so I know this path well.

[lisac77]

Originally Posted by karne

Not meaning to be pesky, but I'm still wondering what interventions the school has tried, esp. if they're screening for phonemic awareness? It seems like something's not adding up, esp. if the teacher isn't expressing concern.

My oldest is dyslexic, so I know this path well.

I think the teacher is overwhelmed, personally.

Here is a handy timeline:

May 2009: DS exits Kindergarten with a DRA score of 4, they look for 6 so we were happy and thought he was making progress.

Summer 2009: My mom, who is a reading teacher, discovers that DS has no decoding skills. We work on reading all summer (I read to him mostly, and he reads some easy readers). Towards the end of the summer we started on the BOB books to try and get him moving forward on phonics.

October 2009: I meet with DS's teacher, and she goes over his beginning of the year test results. He dropped a DRA level to 2 (they want them at 6 coming into 1st grade) and scores a 0 on his phonemic skills test. I asked her to start his evaluation for literacy. She says she will start with classroom interventions.

November 2009: I email his teacher to see where she is on the assessment and she says he is making adequate progress and she doesn't see the need for more help. At home I am not seeing any progress. DS continues to regurgitate the stories he brings home from school (she reads it to them in class) but can't read pure text and is still having trouble with letter sounds.

December 2009: Teacher sends home a progress report that says he is "severely behind in reading, writing, and spelling." I ask for a conference, but she delays me until this month because she wants to do his mid year DRA assessment before she meets with me. Meanwhile DS is starting to feel the strain of being expected to do literacy work that is way above his level.

January 2010: We have stopped trying to do the spelling tests because they are impossibly hard for him and he doesn't retain any of the information anyway. I think his teacher completed his assessment today so hopefully I will be hearing from her soon.

He is at or above grade level in every other area. He just makes no progress in reading... we've been spinning our wheels for a long time on the same level. He can't retain letter sounds or sight words.

As I understand it the schools in this area don't like to test before 2nd or 3rd grade. But by then it's too late... the NCLB tests are looming and everyone starts to panic. My mom is going through this with one of her tutoring students right now.

[Linda on the move]

Originally Posted by lisac77

He has no phonemic awareness. None. He can't remember series of sounds, nor can he pick a rhyming word out of a series of words (i.e. I say "frog" "bed" "dog" and ask him which does not rhyme, and he has no idea).

I'm with you now

Originally Posted by LauraLoo

Because I went down the dyslexia path with ds, I want to suggest that before you do any specific dyslexia testing that you consider doing a vision exam by a developmental optometrist. This is not your typical 20/20 vision exam - a dev. optometrist will check how the eyes are functioning and communicating to the brain, not just "can you read this line." And you aren't going to get this through a school. The link below will provide more info. - it's a good place to start when considering dyslexia.

http://covd.org/Home/AboutVisionLear...2/Default.aspx

I agree 100% and want to add that he needs his hearing checked, really checked. Not a little screening thing but an appointment with a good ENT and a thorough test with an audiologist. Kids can have minor hearing problems that go can go undetected but cause the EXACT kind of problems that your son has.

I'm a fan of getting any testing and special help possible, so while I might call the teacher one more time, I'd be going over her head at the school. I would do it in person and in writing.

I'd also go the private route. I'd start with what my insurance will cover (do you need referals to see specialist? ) and go from there.

Where we live getting into for testing can take a while either way, so I'd get both balls rolling this week.

For working with him at home, I really like "Reading Reflex." It's a little book (cost about $20) that has ideas for games to play to work on phonemic awareness and little puzzles to cut out to learn basic phonics. Because it is puzzles, you can do the same ones over and over. Nice for kids who need a lot of practice. It is how I taught basic phonics to my SN DD.

disclaimer -- There are a few things I don't like about this book. The timeline for what kids should know when was unrealistic for my kids, the schedule for how much time to spend working on it was overkill, and the section after the CVC words didn't really work for us. BUT the phonemic awareness stuff and the CVC stuff was perfect for my DD who had no natural phonemic awareness.

I wouldn't add to his written work while he is in school, but the workbooks Get Ready for the Code, Get Set for the Code, and Go for the Code are excellant for kids who struggle with phonemic awareness. May be over the summer?

In the meantime, keep reading to him and trying to help him maintain a positive attitude towards the written word.

[LauraLoo]

Originally Posted by Linda on the move

I'm a fan of getting any testing and special help possible, so while I might call the teacher one more time, I'd be going over her head at the school. I would do it in person and in writing.

I'd also go the private route. I'd start with what my insurance will cover (do you need referals to see specialist? ) and go from there.

Where we live getting into for testing can take a while either way, so I'd get both balls rolling this week.

Definitely get the ball rolling - with the school (I wouldn't even give the teacher another call, but call the Special Ed. department directly and find out what you need to do - continue your documentation) and privately. It can take a month or two to get in for testing, and then you'll wait for the report and recommendations, and then you'll need to get the recommendations implemented, if deemed necessary.

You may want to contact dyslexia testers (ones that your insurance may not cover) in your area and find out more about their testing procedures so you can compare it to what the school is prepared to do.

If you do go the private testing route - While it may seem convenient, I would try to stay away from testing centers that also provide remediation services if possible. I always try to get the best possible assessments without any "strings attached," IYKWIM. I received the most information from a dyslexia tester that was about 2 hours away from us - she was close enough for us to consider doing an assessment with her, but far enough away that therapy with her wasn't going to be an option.

I found out that our insurance wasn't going to cover a dime for dyslexia testing, and that the schools in our state were not obligated to do all the testing necessary to dx dyslexia. I'm hoping you find out something entirely different.

We did not wind up with a dyslexia dx because that wonderful dyslexia tester told us to go to the dev. optometrist first before she would consider testing ds, after she did a screen on the phone. Turns out all of ds' issues were vision related, and we needed to do vision therapy with ds. Linda on the Move gave a great suggestion - I totally forgot that we also saw an ENT, too, and had audiology testing, which didn't turn up anything wrong with ds' hearing or ear structure. We definitely tried to cross all of our t's. As I learned through all of this, it's very possible to have a variety of issues and missed dx's that can compound problems - so vision and hearing testing is very important in the overall testing.

I don't know if books on tape would be fun for him, but that may give you a little break from reading to him now and then.

[Linda on the move]

Originally Posted by LauraLoo

If you do go the private testing route - While it may seem convenient, I would try to stay away from testing centers that also provide remediation services if possible.

I agree about tutoring centers. My experience was that the center we went to didn't really get sn stuff.

I totally forgot that we also saw an ENT, too, and had audiology testing, which didn't turn up anything wrong with ds' hearing or ear structure. We definitely tried to cross all of our t's. As I learned through all of this, it's very possible to have a variety of issues and missed dx's that can compound problems - so vision and hearing testing is very important in the overall testing.

yep. My DD (who had no natural phonemic awarenes) has perfect vision but some ear issues as well as other things.

[lisac77]

I can call the ENT that did his ear surgery last year and probably get in for an appt in a few weeks.

I will call the educational psychologist that's been recommended to me who's on our insurance and see what they will cover.

There are several universities in the area that specialize in diagnosis of learning disabilities, so that would be the route to take if insurance won't cover it.

As for the vision screening, all of the ones in our area are associated with remediation centers, and TBH I just don't trust them to make an accurate diagnosis when the possibility exists that they could charge me a lot of money for their therapies.

DS told me they did his reading assessment yesterday so I should meet with his teacher soon and we'll move forward from there with the school.

Thanks for all of the input.

[Linda on the move]

Originally Posted by lisac77

I can call the ENT that did his ear surgery last year and probably get in for an appt in a few weeks.

what kind of ear surgery did he have? Hearing problems (even after they are fixed) can cause the kinds of problems you are describing.

[karne]

Just in terms or resources, I found the book Overcoming Dyslexia by Sally Shaywitz, MD, to be very comprehensive and very helpful. I also visit the Eides website, which is very informative.

[Peony]

It sounds like you are headed in the right direction now. As far as the vision testing, you want a Ophthalmologist. I looked through the phone book and found a eye care place that had one, called and said I had a child with suspected LDs and that we needed a complete vision screening to rule out any vision problems. They were able to help us.


I have a 1st grader with dyslexia that we got dxed privately, twice actually at different places. She was actually dxed while still in K at age 5 due to complete lack of phonemic awareness, memory issues, etc... I knew there was a problem, and pushed for testing, the local school district would not test for dyslexia and I had a difficulty time finding any respectable center that would test a child as young as she was so we traveled for the first dx. We came back and spent several months lining up all of our options and then went with a private language therapist that is highly respected in the area. She required another eval before considering if she would take DD1 on as a client.

I had contacted some universities in other states as well so that is a great option to pursue in you have some that are local to you. Good luck.

[LauraLoo]

Originally Posted by Peony

It sounds like you are headed in the right direction now. As far as the vision testing, you want a Ophthalmologist. I looked through the phone book and found a eye care place that had one, called and said I had a child with suspected LDs and that we needed a complete vision screening to rule out any vision problems. They were able to help us.

I'm not certain, but this could vary depending on the practice. I started with calling the only ped. Ophthalmologist in our area and they told me they wouldn't do the vision testing that we were requesting and they specialized in other areas, like correcting lazy eyes and other defects or diseases of the eye, and they referred us to the developmental optometrist.

And lisa77 - we did do remediation with the developmental optometrist who conducted the exam. He was wonderful, and even though we paid out of pocket for everything, it was the best money we ever spend on any type of therapy for ds. So, don't necessarily rule out remediation services that have a tie to the assessment - just beware of a potential conflict of interest.

[lisac77]

Originally Posted by Linda on the move

what kind of ear surgery did he have? Hearing problems (even after they are fixed) can cause the kinds of problems you are describing.

Last year my son was very sick for 3 months. We thought it was a recurring ear infection. We went to the doctor over and over again, and at one point he ran a fever for almost 2 weeks straight. He missed 3 weeks of school. I actually have to stop and calm myself because remembering how sick he was makes me really scared.

It turns out he had the same ear infection for 3 months. 3 months. He couldn't hear - I think we documented 15-20% hearing loss when we got in the ENT's office. Mild to moderate hearing loss. We were so lucky he didn't end up with a horrible secondary infection like mastoiditis or meningitis. He had ear tubes put in and his adenoids removed last February to correct the problem. To my shame, we never followed up with the doctor after DS was better. He'd developed quite a fear of doctors at that point and I didn't want to put him through another exam. He seemed so much better. Now, of course, I'm kicking myself.

So we lost a lot of ground last year in school, and we've been working like crazy at home to make up for all the stuff he missed. This is why I'm really concerned about his reading... in December we got a reading program to help kids who don't know phonics and we've been working through it. It's really, really hard for him. It's also becoming quite obvious that he can't differentiate easily between certain sounds. This is why I am now panicking and wanting to meet with the teacher, who is killing me with her nonchalance about this issue.

In addition, we had a similar experience with a recurring ear infection when he was 18 months old, which we were eventually able to clear up with antibiotics at home, so we never saw a specialist. But I wouldn't be surprised if he had a significant hearing loss at that age as well.

[LauraLoo]

Originally Posted by lisac77

In addition, we had a similar experience with a recurring ear infection when he was 18 months old, which we were eventually able to clear up with antibiotics at home, so we never saw a specialist. But I wouldn't be surprised if he had a significant hearing loss at that age as well.

How is his articulation in normal speech? There are some imprinting times in early speech development - he might have missed some of that. Has he ever had a speech and language assessment?

[lisac77]

Originally Posted by LauraLoo

How is his articulation in normal speech? There are some imprinting times in early speech development - he might have missed some of that. Has he ever had a speech and language assessment?

He had one when he was 4 and he was deficient in some areas, but the evaluation was through the school and at the time he did not qualify for services. So we thought he was fine. He does have some articulation issues, we were assured he would grow out of them.

[Linda on the move]

Originally Posted by lisac77

He does have some articulation issues, we were assured he would grow out of them.

Kids with reoccurring ear infections go for periods of time when they don't hear well, which makes phonemic awareness very difficult for them, which makes reading very difficult for them. They can also be kids who have fluid in their ears often without having infection, which effects their hearing but doesn't have any other symptoms. Tubes are the best thing.

My advice is :

ENT
audiologist
speech therapy

Small speech problems might or might not be grown out of, depending on what is causing them. I suspect that the problems he has with reading are related to his problems with speech and the root cause is what he has/hasn't heard over the years. It most likely isn't something that he will just out grow.

The good news is that he is REALLY young and there is plenty of time to help him get past this stuff. He's going to be in a very different place with all this stuff this time next year.

What reading program are you currently using?

My DD's speech therapist gave us homework each week of simple things we could do together to help -- things like having her watch my mouth while I made a sound we were working on, and then look in the mirror while she tries to make it.

BTW, my DD had a very similar background and is 13 now and speaks clearly and reads on a college level. Kids get past this kind of stuff. We did lots of different therapies and worked with her a lot at home.