Gifted Issues Discussion homepage Forums Twice Exceptional Reading Disability, Executive Functioning, ADHD

It has been awhile since I have been on this forum but have been searching through everything the last few days.


My DS(10 yrs old 4th grader) just got officially Dx (by a private psychologist) as having a Reading Disability, having issues with executive function and being ADHD.

My first question is- the psychologist says he his dyslexic when trying to describe things to me, but they list it as "reading disability". Can anyone explain why. We live in NoVa (northern Virginia) and I am pretty sure the schools do not currently recognize dyslexia- is this why? And why wouldn't they? So is it just pretty much word play- but means they same thing?
I want to make sure that I am researching the right things when considering treatment and tutoring.

And for the ADHD- we were expecting the reading issues- that was the whole reason we took him in for testing this time. But the ADHD (inattentive) was somewhat of a surprise. Yes, he could be the poster child for the symptoms and characteristics listed, but since this is the 1st time anyone has mentioned it- it, was very shocking to hear. I am not against medication- but only if it seems necessary for a positive outcome.So hoping for any 'been there and done that' parents to share their perspectives please. My argument against was that even though this seems right on- no one has ever mentioned the possibility, therefor is it actually a problem that needs to be medicated? Is it really affecting his day to day activities? His argument for was- if we are going to be working on the Reading Issues- the ability to fully concentrate will be essential. If he is not giving his full attention, then those efforts will not be as successful.
Insight greatly wanted What he says sound right- but just need a sanity check!

My last question- anyone know what are all the methods of teaching to reading disorders. I have found two so far. I am currently reading the gift of Dyslexia. He sounds like his method rocks- but I want to make sure I do not limit myself to the first thing I stumble across. Also what can we expect the school to offer help wise? The psychologist warned us that many times if not done properly- the help can actually hurt and make things worse or at least more frustrating for the child. And that some schools do not provide the "right help."

We get the official written report in 2-3 weeks, so can not tell all the test and scores at this time. But this was a long drawn out testing and observation evaluation over the last 2 months so I feel that it was very through. I think the hours DS put in was around 14!! But just the over view- he has this time ,and any other time, tested into the mildly gifted range.
However there is a huge separation between ability and achievement. His lowest ability category was in the 89% and his highest achievement category was in the 25% (these are not the same cat- so imagine the actual separation for the ones that range in the higher 90's%). It is heartbreaking to know his potential and see how he is actually doing.

Thanks
Cory


FYI- we will be talking to the school (he is already on an IEP for speech), DS's ped and our insurance to determine the best course of action. Plus keeping some regular visits with the psychologist for help following his progress. We have to wait for the official report though, so just fishing for info from others to help out with what to expect and what we need to fight for.

I am the mom of a 14 year old that was diagnosed with dyslexia at the end of Kindergarten and ADHD inattentive type in second grade. I am also a special education advocate so I will be able to address your concerns from two perspectives: As a mom with all of the emotional issues that come attached, and as a professional that works with families and schools to help children like yours.

First – congratulations on getting him tested and beginning the process. Many parents become paralyzed and cannot take the first step (evaluation) to help their child.

You ask about why the school does not use the term “Dyslexia” . The main reason most schools that I deal with (Boston area) use specific learning disability in reading, is because this is the eligibity category listed in IDEA (Federal Special education law) and state law. There is some reference to dyslexia in the legal writings, but it is typically called SLD (specific learning disability). There is also a lot of discussion even among educators that use the word dyslexia as to its precise meaning. Questions as to whether it includes comprehension issues or only decoding and fluency issues persist. I agree that it is word play and I think it is crazy. That said, my recommendation is to use whatever term the school uses. You don’t want to get lost in a discussion about word usage at the expense of getting a good plan and the proper instruction for your child. It’s a case where you pick your battles.

As far as the ADHD-in. I cannot say whether or not your son has this. But, you should know that there is a very high co-morbidity rate between dyslexia and ADHD. Often times ADHD-in does not present with the social and family problems that ADHD hyperactive, impulse or combined does. I was SHOCKED when my son’s teachers raised the idea of inattention. My son can spend hours at a task. Little did I understand that those hours were because of a lack of attention – not focused concentration? He could get lost in thoughts, zone out and remain “working” and well behaved. After two years of trying alternative approaches to his inattention, we tried medication. It produced instant dramatic results. And, as your evaluator said, brought my son to a place where he could take full advantage of the instruction we provided for his LD.

As far as the testing goes – lot’s of scatter (highs and lows between test scores) are a hallmark for LD. In addition to achievement ability discrepancies, you will usually see very low processing speed and working memory scores on the WISC (IQ test) compared to Verbal comprehension and and Perceptual reasoning. For more complex learners, you might also see a lot of scatter within indices. For example, my son’s VCI (verbal comprehension) score is more than 50 points than his processing speed. He is very bright if you look at the reasoning scores on the WISC, average in memory, and borderline in his rate of processing. Like your son, the difference between his ability and achievement on most measures is also vast.

So, what to do about it? My guess is that your son has challenges across all subjects – especially when reading and writing is involved. Given the ADHD diagnosis, my sense is that he also has trouble with organization, planning and getting started on his work. ALL of his challenges should be addressed in his IEP. (Also – it is not unusual for kids with reading disablities to need speech. This is often a warning sign. Thus – the diagnosis can be very broad “Language Based Learning Disabilty”).

I suggest you read “Overcoming Dyslexia” by Sally Shaywitz. She lists and explains the components of a sound reading remediation program. The program will have a large component of a rules based, multisensory, phonemic reading program to teach the child the sound symbol relationship and the rules of written language. It should have a component of fluency to help the child develop an automatic, accurate recognition of words and word patterns and learn to read at a rate that will be fluid enough to allow the brain to comprehend.

Most of the Phonemic reading programs are derivatives of the Orton Gillingham Approach. Schools often use Wilson, Project Read, Barton, LiPS, Lively Letters. For fluency many schools use Great Leaps or Read Naturally. You can get an overview on many on line sites. Here are some of my favorites:
http://www.interdys.org/
www.ldonline.org
Reading rockets
http://www.adlit.org/
http://www.smartkidswithld.org/

As far as what to expect from the school. This depends on so many things – the culture of your school, their resources, the complexity of your child’s needs. We ended up placing our child in a school that specializes in teaching kids with dyslexia from grade 3-8. (www.Carrollschool.org). My son is profoundly dyslexic and even our affluent, high performing school district realized he needed an intensive environment. (There is a similar school in the DC /NoVa area – I am blanking on the name). I have also worked with families that have kept their kids in the public school with good results.

The key is to get a comprehensive program, delivered with sufficient intensity, by skilled professionals. Sometimes lack of resources gets in the way. It is also helpful to surround yourself with professional advisors such as your evaluator to help you cut through the special ed maze.


I hope that this helps!!

Oh - one more thing. It is critical that you fully understand your rights and responsibilities in the special ed process. www.wrightslaw.com is a great resource.

I second everything said by Mich - great advice.

The only thing I'd like to add is to make sure in the IEP is that you push for accommodations across subjects, not just reading. Dyslexia creates issues across the board. The way I approached this, and it was accepted by the entire team as a good idea, is that it was better to throw as many accommodations as possible at the wall so that the teacher would have what was needed when we were in the thick of things. If administration sees it as something that will help the teacher, they seem to get on board a lot faster than if they see it as something that will help the student but create a burden for the teacher. Maybe others haven't had that problem, but it has been my experience.

My son was taught to read using the Wilson Reading program, but he was in first and second grade; I don't know if it applies for older kids. He went from reading two grades below his age level to reading on grade level in about 6 months after being put on the Wilson program. He's still not a fluent reader when reading aloud, but he can definitely read for comprehension and decode words accurately. What it didn't help was spelling. His spelling (he's 12 now) is atrocious and random.

It's a huge learning curve at first, but it gets easier.

ADHD-I kids are often quiet and patient (LOL - they are out to lunch!) so NOT the sort of kid that draws complaints from teachers!
You say the ADHD-I hasn't affected your child in any way. But I say that the low achievement category maybe a big waving red flag that the ADHD-I is causing real harm in the present. The achievement discrepancy could be 100% from the Dyslexia, but that odds of that being true seem small. If you are really looking for evidence that the ADHD-I is an actual problem that needs adressing, the dyslexia itself and the achievement gap seem, to me, to be evidence enough.

My guess is that you child 'talks' a good game, so that you and the teachers feel that your son is 'smart' and 'ok' even though reading is a problem. It's hard to be all upset when a child can be such a good conversationalist, at times. The reason I'm concerned is that life doesn't wait for a kid to be having a good day. Learning needs to be happening every day, all day long. And for dreamy kids, all day long is very long indeed!

Not that it's a bowl of cherries trying to find the right medication for your particular child. I call it the medication merry-go-round and it's a total pain in the behind. But I can say that your doctor's advice sounds totally reasonable, and your arguments seems....well....a little besides the main point.

I think for medication that a better way to think about it is that once some kids have the experience of what it feels like to be able to concentrate, using the medications, then they might no longer need the medication, because they learn alternative ways to turn their brains to that particular state, and to maintain that state. I don't think that medication alone is a good idea, but in this situation, my guess is that all the 'extra attention' is going to go towards kicking the Dyslexia. How much concentrating on remediation can a kid and a family do at one time?

I'm also wondering about the IQ results, do post them when they arrive. Try and get a GAI, which for your child might be much much higher than the Full Scale moderately gifted number.

Best Wishes,
Grinity

Welcome Cory. I'll second what everyone else has said - you've received great advice. There are two things I'd add, just food for thought.

The first is, when you first find out your child has an LD it's easy to feel very rushed to solve everything overnight and at once - if you find yourself feeling overwhelmed, take a deep breath and take a step off the roller coaster of emotions for just one minute or so. It's a long journey. Many of us along the way find that after we've raced to get early remediation and accommodations in place, we find other things we need to try, other ways to help our children, etc. We often feel like we just can't do everything we need to do or that there isn't one clear path to follow. I am not saying this to scare you or discourage you, but to help you know that simply by seeking info, testing, etc - you are doing *exactly* what your child needs. It's not going to be an easy road and you're not going to solve everything overnight, but you're going to get your child to where he needs to be - even if it doesn't feel like it right now.

Second thought, and this is a bit sticky - our ds12 was also diagnosed with ADHD inattentive type when he was first diagnosed with his LD. In his case, it was *not* an accurate diagnosis. If you haven't seen signs of it yourself, and have your gut questioning is it really ADHD, I'd do a bit more thinking through and research before medicating. BUT that's just me. There are symptoms and behaviors that are common across syndromes and it's not always easy to tease out what's really up when our children are young and we're first learning about their challenges. In my ds' case, his behavioral surveys from school and teacher's opinions indicated ADHD but ADHD was what they were familiar with. His neuropsychologist saw slight potential difficulties with focusing in her testing, and he clearly has some executive functioning challenges in organization. After we'd made accommodations for his actual disabilities and those had been in place along with remediation for a few years, it was much clearer that he did not have ADHD, but instead the behaviors that had seemed to indicate ADHD were due to a combination of symptoms of his other diagnoses combined with behaviors caused by being stuck in school and unable to complete the tasks he was required to do due to his undiagnosed LD.

Please know that I 100% agree with the others - if he has ADHD, you'll want to do your best to treat it (however you think is appropriate, meds or no meds).

Best wishes,

polarbear

ps - eta, re the low achievement testing scores - it can be so surprising to see how low they may be, but try to remember they are giving you specific information about how your child is functioning. They also might not be so clear as they appear. It really helps to look at how each individual test is administered - was there an oral prompt or did your child have to read the question? Was the answer given verbally or did your child have to write out the answer? For kids with LDs, when you divide up the tests by prompt and response type, patterns emerge that are there because of the impact of the LD, not because your child is really at that achievement level. Just a for instance, my ds has severe dysgraphia. He scores very low on math fluency tests where he has to use handwriting. This doesn't mean he doesn't know his math facts, it just means he can't write them down quickly.

Thank you so much for the replys! I really appreciate it.

Lots of good stuff to think about and consider.

My DS is exceptionally bright and most people who have ever dealt with him seem to have a good impression of him. He is very well behaved (as much as any other 10 year old that is!), class president and seems to get along with everyone. There are not many people who do not seem to like him overall. He loves learning but he is starting to dislike school. Verbally he can really impress you with what he knows and comprehends. But that intelligence level has never been shown on written work. The first grading period this year- the teacher even apologized that she had to give him a C in science. She said at that point in the year- the only gradable work was written work. She admitted that she felt he did know the info though and admitted that she was impressed with his level of knowledge.

Like many others on this board- I think that is why he flys under the radar on many issues that he has. He is not "failing" and can demonstrate his knowledge. But there is a downward progression of his grades (and almost completely revolve around issues related to reading/writing). I am hoping that the school will be able to (and be willing to) provide the help he needs so he doesn't keep falling until he does hit the point of failing.

I do believe he was correctly diagnosed with ADHD- but since it is a new thing (and unexpected) to learn about for us, I will probably ask some stupid questions and even play devils advocate occasionally to help my self work through everything. I always try to argue both sides of issues to help see the bigger picture. My husband and I just meet for lunch and discussed this in great detail. I think we are both on the same page so that is very helpful. We are honestly leaning towards medication- but that is scary when it is a new thing!!

Mich- quick question if you do not mind?
Would you recommend that the psychologist comes to the initial meeting that we have with the school. Or save his services for latter if we hit a road block? DS has been on an IEP since he was 3 (for speech), but since there have never been any problems we are unsure of how bringing in new stuff will be processed. Having a specialist come along is $$ so want to make sure we do not unnecessarily use those resources. If it is worth while- no problem at all though!

We have had one fight with the school (more like a speed bump) and it had a positive outcome- so hoping that is a good sign.
(they wanted to take DS out of the accelerated math class because he was not completing his work in a timely manner. We said we would only agree to that if they felt he was having issues with the concepts- not just the written work. They did not argue one bit and agreed. That was 2 months ago and have not heard anything else on the matter)

Hi Cory:

You can ask the IEP team for verbal assessments of knowledge in areas such as Science or Social Studies. This is a reasonable accommodation for dyslexic students, and would be a much better test of what your son knows.

I was able to get assistive technology for my son, and he types his tests and essays instead of writing them out by hand. It really helps his marks, because his spelling is much better, and he can type much faster than he can write by hand. My son is Dyslexic and ADD-I and is doing well now in school with accommodations.

I enrolled him in an intensive phonics course when he was in grade 1 and falling further and further behind in reading. It really helped him read well, although spelling and organization are still a huge struggle.

DMA

Hi Jolene,
Our DD8 has also been (tentatively) diagnosed with ADD/inattentive type along with a bunch of other stuff. We're still trying to figure it out, but I just wanted to offer the following, which is that perhaps you could just try medication to see if it helps and if everyone isn't happy, stop. I have a coworker whose son is in 9th grade and has been diagnosed with ADD/in. and who is taking Concerta as of earlier this year. My coworker says it really helps him focus so that now he can sit down and read a book whereas before this was difficult, and he actually likes the effect of the medication and asks where the pills are if he can't find them so that he can stay medicated. My understanding is that Concerta wears off pretty quickly (maybe even within a day??) so if your son took it and didn't like it, it wouldn't have a lasting effect.
Best of luck.

DS12 just went on 5mg Adderall and I sure didn't expect the result we got. When his 2nd grade teacher said he had attention problems, I started digging around. Long story short: He was diagnosed with central auditory processing disorder and dyspraxia, which is a motor planning disorder. He needs time to compose his thoughts and often wrote backwards (as well as doing karate etc backwards). He does have a relative weakness in cognitive efficiency. He started meds during basketball season, and I'd been sitting there watching his hands deflect the ball rather than catch the ball. Then he'd complain to me that the passes were bad. I could NOT believe the difference in how he played from day 1. Mr. Studman scored 14 points that day and he was a scorin', ball-stealin', reboundin' son-of-a-gun the rest of the season. We still think ADD is a lame-o diagnosis. His doctor and the school occupational therapists I've talked to have never heard of stimulant medication increasing motor coordination. But we're gonna keep him on it.

Stimulant medications have well-documented positive effects on motor coordination. This is one of the reasons they are banned under IOC rules.