UPDATE: Reading Recovery Program? Advocacy tips? Talk me off ledge

[sste]

Update: Well, there is blood on the ground of that conference room but DS now has a 1:1 Orton Gillingham trained reading specialist for 25 minutes per day. This will continue for 20 weeks and then after that we will likely need a private tutor to finish the steps. Unfortunately it has to be after school because the OT trained teacher is completely booked with kids at different levels then DS and the program is sequential. I think DS has impact on the regions of the brain involved in dyslexia - - he is pretty textbook as best I can tell - - but because we caught it early, because I think it is on the mild end, and because he is smart enough to compensate I doubt after 20 weeks of tutoring we will meet the school/state law definition of being very far below grade level (I think 1.5 years). But that is a good thing.

I must say I am baffled at all I have read here about collaboration and teamwork. This was a STREET FIGHT with basically me against 10 school officials. They behaved like animals--I was a former attorney at a prominent national law firm know for its aggressive litigation and professionally I have never seen anything to rival this. They violated the law so many ways that even they realized (and I have made them aware that) I have robust grounds for a child find complaint against them -- blatant lies that I needed to wait for response to intervention, that they could choose response to intervention instead of an evaluation, that the tests they had already done were "better" than the evaluation, and that if they evaluated they would just use the old assessments and give only one new test. I read the relevant laws that say the opposite to them and they kept on going. The administration had all coordinated before I entered the room. Really they went too far and I documented the cr*p out of the whole thing. They were in serious danger of action against them (which I made them aware of) not to mention my making their lives living hell demanding weekly testing, progress monitoring, multiple more IEP meetings. They came back over the weekend with a new plan of evaluating DS and then at the meeting offered to put him in the reading program we feel he needs, 1:1, with an amazing teacher (I actually checked out her certification for the OG program and the certification program raved about her).

So far, so good.


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DS qualified for a reading intervention program -- in fact, he must be in the bottom 5% as only 4 kids out of 80 qualified for the 1:1 daily coaching he is going to receive.

The issue I have is this "reading recovery" program is NOT well regarded in academia, pediatrics etc. I have pulled a lot of research reviews but what flagged the issue to me is that I spoke with my sister (reading specialist), DS's psychologist (also a testing psychologist at a center for kids with developmental issues), and a nationally very well-respected literacy consulting organization and they ALL, one after the other, were not enthused and said to try to get the school district to do something else, something that is phonics-based. Certain aspects of reading recovery seem bogus with them using their own "assessment tests" to show the program works, etc.

By way of background, DS def. has issues with sound discrimination/speech, translating the sounds to letters (phonics), and some amount of "visual perception" issues or difficulty copying shapes/letters. He was anxious but we now have that about 80% reduced, he is down to maintenance therapy and vastly improved. We have never had him formally tested but his psychologist (also a testing psychologist) who knows him well saw him at ages 3 and 6 has told us repeatedly he would test as gifted and she told me he is going to light up any "learning disabilities" test as his discrepancy is going to be huge.

I met with the classroom teacher (who basically blamed me for not "making him" read at home) and the reading specialist (who could not intelligently answer a single question about DS's deficits, the focus and structure of "reading recovery" and how reading recovery was a TARGETED intervention to his specific issues).

My district is not rich and has been extremely generous in that that they provided speech right off the bat, increased his OT to an hour a week on their own, and now are offering him 1:1 tutoring 30 minutes per day with a reading specialist. But I can't seem at least at this point to talk them toward any other reading program than this reading recovery (which they just adopted and are oh so excited about).

What do I do? I have already put in a written request for a comprehensive learning disabilities test and reading evaluation to be performed by the school psychologist. I am hoping that will document the phonemic awareness and what I suspect are decoding issues so that I can try to get phonics-based instruction delivered to him. But the state agency helpline is telling me that so long as the reading program is "evidence based" which reading recovery is (just barely IMO and probably not for that long) I don't have a right to request a different reading program aimed at DS's needs?

Sorry for the novel I am just flummoxed my district wants to spend about 8,000 per year on this 1:1 instruction for DS and not have it be a program with strong evidence behind it geared toward his needs?!

[inmypjs]

You are right to be concerned. Reading Recovery is heavily promoted in schools that have trained Reading Recovery specialists and in states where there are university Reading Recovery Centers designed to train teachers in the method. We have them, so I feel your pain. What frustrates me is that I do not believe a reading teacher should be blindly trained in a single methodology. They need a toolbox of approaches to use with different kids. I've had Reading Recovery teachers tell me, well this is all I know how to do. That's sad.

A few things... Is your child in 1st grade? Reading Recovery is meant to be a time limited intervention program for struggling first graders. Around here, though, the RR teacher works with all grades of struggling readers and essentially gives the same kind of instruction. So if your child is not in first grade, RR should NOT be used. It was developed as a first grade intervention program, period.

And yes, much of the research supporting it is done by the program developers, which is a little like timing yourself in a race and saying "I win." It has been heavily criticized by those in the dyslexia community because it is much more whole-language based. It is not systematic or explicit enough for most struggling readers. It is not very multi-sensory. It teaches kids to rely heavily on context cues and pictures. It turns a lot of struggling readers into guessers. They also drop kids who don't make much progress from the program, and don't include them in the outcome data. It should be noted that RR has changed their web site recently to reflect more of these buzz words - like systematic, multi-sensory, etc. However the method has not changed.

I assume you have seen these documents:
http://www.decodingdyslexiaiowa.org/...ery-Letter.pdf
http://darkwing.uoregon.edu/~bgrossen/rr.htm

You can find other reviews of RR by Sally Shaywitz in her book Overcoming Dyslexia and on Susan Barton's web site.

If it was me, I would write a very direct letter to the school stating my objections to this program and ask for exactly what I wanted instead. If they insist, I would also ask them to provide externally validated evidence that RR is effective for students like your child. (I would not accept RR's own studies as evidence.) You will have to fight, most likely. If all else fails (and assuming your child is in first grade) and they put your child in RR, I would ask for weekly progress reports. If there hasn't been any progress in 6-10 weeks, I would ask for a change in methodology of instruction.

My advocacy group provides support to a lot of parents in your shoes - they want better reading instruction and programs for their child. There is no magic formula to getting it. The 2 things that people have done here that seem to work best are 1) Proving with the school's data that what is being offered is not effective, and/or will take years to close the gap for their child, and 2) Finding out which schools in the area and the state are offering something different (like Orton Gillingham), and telling their schools about it. Schools tend to take notice when they find out that their cohorts are offering something they don't.

Good luck.

[ray7694]

It is my understanding that the intervention is highly intensive for six weeks. I am not sure what intervention you think would be more beneficial. Every program has pros and cons. After the six weeks you could request the evaluation and see what the district suggests next.

[sste]

Ray, in my district I believe it is closer to four months. What I want is a program that doesn't have doctored evidence behind it that is phonics-focused and therefore appropriate for my child who appears to have phoneme awareness and phonological issues. That would be OG, Wilson/Fundations, Project Read, etc. I am not interested in a reading program that is not targeted to my child's deficits, I don't think any rational and informed person would be! This is not a matter of pros and cons IMO this is a program that is looked upon with distaste by the research community, by highly skilled independent practitioners in the reading and disability fields, by physicians. It has committed ethical violations in reporting its evidence, has refused to make changes that were proven to increase its efficacy, and uses outdated hippy-dippy techniques. There is a stream of money pointing somewhere is my guess to explain why this cr*ppy program is still used.

Inmypjs, DS is in first grade. My concern is that daily tutoring and their flawed assessment measures will artificially inflate him for a few months, he will phase out, and then he will regress. Meaning another wait to qualify for services. They are starting this next week, his IEP meeting is the second week in October, I have requested a full LD assessment by school psychologist but this will take a couple of months. I don't know for sure that he is dyslexic but there is def. something going on with phonics, his background knowledge, inferential abilities, comprehension, and vocab are way ahead. I did request that the reading recovery teacher administer the dibels or like universal screening/monitoring tool at the beginning and every three weeks after and share the results with me. I asked very specifically if there was any other program available and the reading recovery teacher said no?? I feel like since I don't have comprehensive assessment (yet) it is hard to make definitively the argument that this is not an appropriate program for him but I strongly suspect it is not.

Just to follow up, inmypjs and others, in my shoes would you:

1. Hire a special education advocate/attorney to attend the next two IEP meetings and advocate for a better reading program? My sister is a reading specialist and she has seen this be very helpful in her district but I don't know if that tends to be true more widely. Also I find this very emotional and that impedes advocacy for me.

2. Pay for a private neuropsych eval immediately and not wait 6-8 weeks for the school's? Our therapist said our school does do good quality LD assessments, she would go over it with me and tell me what follow up additional tests to request from the school. So a big savings that could be put toward tutoring.

3. If I take him out of school for an hour each day for private orton gillingham tutoring will he be considered truant? We live 1.5 blocks from the school, nanny in home, we do this logistically but is it legal? I just can't ADD another hour to his school day, he is working so hard at school and as a six year old is already pushed to the max with the very academic first grade situation.

[egoldber]

Pay for a private neuropsych eval immediately and not wait 6-8 weeks for the school's? Our therapist said our school does do good quality LD assessments, she would go over it with me and tell me what follow up additional tests to request from the school. So a big savings that could be put toward tutoring.

Well, this is what we did, at least partially. We paid OOP for some testing and let the school do some of it too. The pieces I was most concerned about I had the private person do. Things I was less concerned about, but still have to be done as part of the overall evaluation, I let the school do. You could let them, for example, do the WISC and achievement testing, and have the private person do the reading assessments.

The other thing I would consider is if the school can actually diagnose. Here, the school will not diagnose. They will say "there is evidence of XYZ", but they cannot say your DC has XYZ. Maybe that is just for diagnoses like anxiety and ADHD and not LDs? But I would ask this specifically if the school process can get you a diagnosis.

[mom2binsd]

Has the school slp done a full evaluation, all of those phonological skills that you are concerned about the fall within the slp domain. I'd sit down with the slp and discuss your concerns, the slp may be able to advocate for the type of program he needs as most slps favor a phonics based approach to reading.. I know I do as am slp.

Sent from my SPH-L710 using Tapatalk 2

[hillview]

if money isn't a big issue I'd
- do a private Neuropsych for everything (not just language) just to make sure I had a complete picture of what was going on (including SLP, OT work as well as language)
- meet with school on results to discuss what is appropriate, if merited, advocate for Orton Gillingham 1:1 training
- if school cannot/will not/does not meet needs, consider tutoring with OG certified person

DS1 has dyslexia and is in a special school for dyslexia. DS2 has a lot going on (maybe dyslexic, he is just 7 and not testing dyslexic yet, just behind) he has a 3x a week tutor for language.

[sste]

Thanks so much everyone, I have been terribly upset but have managed to talk and network a great deal in the past 12 hours! In particular we have as a resource DS's psychologist who is extremely smart and competent--she is fully CBT trained for anxiety, trained in behavior intervention/special needs but also fully credentialed in testing. The long and short is that we are stuck with this program for a couple of months and who knows it may work, it does for a few kids, while we make the case that DS has a language learning disability and that the reading recovery program is ineffective. So does this sound like a plan?

1. I am going to have the district do the comprehensive LD evaluation and give me in advance a list of the tests and batteries they will use. Our psychologist said she would review it and tell us what requests for further tests she thought the district should perform for a comprehensive assessment. If they refuse we would do those tests privately. She said even if we pursue private testing it will take at least a few months. Our private and insurance-covered therapist can "piecemeal" together for us the equivalent of full neuropsych evaluation using the district and then a few private add-ons. The school testing won't ever use the word dyslexia but I believe they will diagnose a "language-based learning disability" and they are one and the same and are treated that way by the school.

2. I am requesting from a school a list district-wide of the various reading programs that various staff are trained and qualified to deliver. There is not a Wilson or OT person at our school but I am pretty sure there is one in the district. My hope is we can eventually get our hands on services from that person!

3. Our therapist's advice was to "play nice" until we meet any resistance on an important item (and to be fair the school has been very accommodating and is making good effort and spending a ton). She said then if money is not at issue to move immediately, like a train on fire, to bring in a special education lawyer and to on the spot inform the school we would be bringing in a special education advocate since we hadn't reached a satisfactory resolution of X on our own with them. Both my sister and therapist felt like our money was better spent at least as a first pass at trying to use a lawyer to get DS the right services in school rather than immediately paying for private tutoring.

4. She said to have the reading recovery person do a pre-intervention assessment using dibels (nonsense word reading test that evaluates DS's actual weak area and can be performed in a couple of minutes). She said then to get a dibels assessment done and communicated to us every 1-2 weeks thereafter. She also said if they attempt to "graduate" him and we have any twinge of doubt we should get a private reading assessment done -- the ones school's use often slant toward showing more progress, not testing sub-areas etc.

5. Hill, do you have a preference for OG over Wilson? Our therapist said OG is more multi-sensory, Wilson a little more phonics-heavy (though both programs have both elements). She was sort of leaning Wilson for DS because her intuition is he has relatively mild language/learning dyslexia issues and she thought more severe dyslexics tended to really click with the OG multi-sensory. Do you have any opinions?

6. Also thanks momsbind, our SLP is a rock star and she is our case manager. She has been a very good advocate for DS. I am going to talk to her to see what she can do. She did some assessment (not sure if it was comprehensive?) at the start of the year and it def. showed some problems hearing the distinction between several sets of sounds.

7. Also to anyone else wondering our therapist told us that if we take DS out of school an hour per day for tutoring it is not considered truancy in our state, esp with a documented need. She has clients taken out of school daily and also she said a few public schools she has worked with have been able to find space for the private tutor to come inside the school.

I would just like to add to this manifesto that I cannot believe the day has come to pass when a teacher has accused me of not providing enough enrichment to one of my children, I am still p*ssed!!

[inmypjs]

Here are my thoughts...

1) Get the neuropscyh eval. It is good info. for both you and the school. Dyslexia can be diagnosed in 1st grade. "I don't know for sure that he is dyslexic but there is def. something going on with phonics, his background knowledge, inferential abilities, comprehension, and vocab are way ahead." This pattern is VERY typical of dyslexia. Based on what you are saying I would be very surprised if he doesn't have it. Dyslexia affects 1 in 5 children, according to 25+ years of research by the National Institutes of Health. Schools laugh at that stat, because most think dyslexia involves reversals and backwards vision. It has nothing to do with that. If you need the references for that NIH research, let me know.

2) I personally wouldn't give up on getting an OG methodology instead of Reading Recovery. My goal would be to get it written into the IEP. I would first ask, as you said, what teachers are trained in any OG methodologies (pure OG, Wilson, Barton, Alphabetic Phonics). I would also ask if there in fact kids getting this type of instruction and about how many. If there is a decent amount of OG work being done in your district, you may be able to fight for it on your own. If not, I'd absolutely get a lawyer. I'm guessing most people won't agree and think this is a drastic step. But it's really not. But my advocacy group talks to parents our state - about a dozen per week - from people in your situation and with a lot less knowledge than you have. The stories are not good. The less your district knows about OG methods, the longer it's going take you to explain what these are, why they work, and why your child needs one. A special ed lawyer can speed things up greatly. You are not suing your district. You'd just be hiring a lawyer to help you advocate for your child's best interests. The parents I've known who have done this have spent about $750-1500 and have said it's the best money they've spent.

3) I would not worry at all about doing pure OG vs. Wilson vs. Barton. They are all Orton Gillingham methodologies and all work well with struggling readers. I have never heard that Wilson is less multi sensory. Pure OG is the hardest for a teacher to learn, followed by Wilson, and Barton is the easiest. Teachers can get Wilson certified, but it takes time and $ that not all schools are willing to shell out. Around here, what has happened a lot is that the school gets the Wilson program, doesn't get anyone certified, and then it isn't done well or with fidelity. Untrained teachers tend to pick and choose lessons from the program, instead of doing it systematically from start to finish. That doesn't work. Barton was made for parents - however it's good for schools too, because it comes with a 7 hour training DVD for each level, and the teacher's manual is scripted. It's almost impossible to screw up. I would DEFINITELY find out who is trained to do ANY of these OG programs, with trained being the important part. I would be impressed if you district knew. The majority of districts in my state have never heard of OG methodologies.

4) To find out if you child can go home for tutoring, check your state's homeschooling laws. In my state, what you are describing is called dual enrollment. Not all states have it. It means your child is homeschooled for some subjects, and attends school for others. If this is legal in your state, then yes, it is allowed. There are tons of people in my state who do it for the reason you would be. In your case, you'd be homeschooling for reading and spelling, via an OG tutor. Or in theory, you can buy the Barton program and do it yourself. You don't even have to do that work during the time those subjects would be done at school. Homeschooling is based on your schedule. Most schools would expect your child not to be at school for those subjects though.

5) In our state, because OG methods are not regularly offered, there are a lot of creative solutions happening. Some of them are: Parents decline the reading IEP and do private tutoring, 2x/week for an hour each. (They decline the IEP because often the methods offered by the school, such as RR, confuse the child and are counter to the OG instruction.) Parents negotiate to have their privately paid tutor come to the school during their child's reading/special ed time, and do the tutoring there. Parents also arrange for Skype tutoring the same way. I've known a few parents who reached an agreement with their school to finance part of the OG method being implemented - such as paying for the teacher to be trained in Wilson, or buying the OG program to be used. None of these are ideal, but just saying that people work things out on a case by case basis sometimes.

My bottom line is that I would not rely on the school to remediate a reading disability. I would get a private tutor, or train to do the tutoring myself, while I was working through the school processes above. I'm sure that sounds skeptical, but I've just seen and heard way too many stories. Here's an analogy for those who are wondering why. My FIL recently had a treatable form of prostate cancer. What if his surgeon hadn't had any instruction on cancers, let alone prostate cancer? Teachers do not receive instruction on the science of reading, what works works with struggling readers, and why. Even reading specialists who receive master's degrees in reading don't take classes any on dyslexia and how MRI scans change after OG instruction (unless they go to one of a handful of schools accredited by the IDA). Just as my FIL would not have trusted that surgeon to care for him, nor should you trust people to help your child who have had no specialized training in this area. It's a shame. And it's not the teachers fault that our universities aren't teaching this. But in the end, you have your son, and it's your job to get him what he needs now.

Oh and one more thing... contact Decoding Dyslexia in your state. They are always advocating for OG programs and might be able to tell you more about what is happening in your state and area.

[sste]

Thank you inmypjs for that awesome post!! Will be following your wise advice. We def. are trying to get DS into an OG method but I think we are stuck for around 8 weeks with RR because going public or private testing will take about that long. Also I am starting to hunt for private tutors now and given the cost I want to find an awesome one and that will take a month or so too most likely to interview etc. Our therapist also warned us if we start OG/Wilson now while the RR is going on it will probably make it look like RR is working and then we won't be able to argue for a change via his IEP!! But yes I want him gone from reading recovery. Thank you so much for the advice and help! I am going to find our local decoding dyslexia group tomorrow. I have been in contact with Literacy How (very helpful and also referred us to a state dyslexia group) and our local town special needs group (director also despises reading recovery). Decoding dyslexia is my next call.

Inmypjs, do you know how many years of tutoring a kid with milder dyslexia might require in a range? Could it be as little as 1-2? I know the neighboring suburb to us actually offers Wilson routinely in their special ed and if I am looking at 4-5 years of paying for private tutoring 4-5 times a week, it may make sense to at least consider a move.