Tuesday, August 16, 2011

Construction Zone

PLEASE excuse the blog mess. I am neither a graphic designer nor a code writer and my internet hizzy looks like sh*t. We'll get it figured out but in the meantime, pleasepleaseplease do not judge this book by it's cover. Thank you!

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PaleMother said...

Hi. I'm here from your recent blogher post ... wanted to post a reply ....

"What do you do with a child who sounds like a tiny professor but has no idea how to make friends? Or one who cannot seem to understand how to write a complete sentence, but can tell you anything you want to know verbally?"

Can you say gifted dyslexic (aka "stealth" dyslexia)?



"One who cannot tell time or tie his shoes, but understands what "pixilated" means and can use it correctly in a sentence?"

Three letters: NLD. Nonverbal learning disorder.

My son (just turned nine, an August baby like your son ... we redshirted him and he enters third grade in a couple of weeks) he was diagnosed with dyslexia (reading, spelling, written expression issues), dysgraphia (handwrting disability), suspected dyscalculia (the math face of dyslexia -- symbol imagery is hard for dyslexics) and ADD (inattentive type). He also has some features that are comparable to a nonverbal learning disorder (in other words, the functions of the brain -- visual, spatial perception functions -- that don't relate to ~verbal~ skills ... are challenging for him). He is not diagnosed with NLD, but some NLD therapies are recommended for him because they will be helpful.

In the good news department, like your son, he scored in the 99.9th percentile for his age in verbal reasoning and also scored very high in vocabulary and verbal expression. The school ~thought~ he was reading slightly above grade level (Oh, he ~can~ read ... but he has quirks in his fluency and decoding that have to do with a problem with his visual and working memory. Aka dyslexia). In spite of those mechanical issues, his reading comprehension remains high because of his verbal reasoning strengths and autitory memory skills.

Children who are "twice exceptional" ... that is both gifted ~and~ learning disabled ... often confound teachers who have no experience with complex learning differences because these kids can compensate around their weaknesses with their strengths, at least to some degree.

I met with his team to sign off on cancelling his 504 last year (they'd been giving him a pathetic amount of OT for his handwriting but they said he no longer qualified ... which is total BS if you could see his writing). They told me, "He doesn't fit the profile of a learning disabled student." (which sounded good to me at the time ... who wants that for their child?). But apparently the only LD "profile" they are aware of is a child who has completely hit the wall and cannot meet benchmarks. Well, give my son another year or two without very tailored interventions and that's where we'll be.

"It means that he has such a lack on interest in his schoolwork that he could have failed the second grade. It means so many things, and very few of them are good. It means that Will himself thinks he's worthless and stupid."

Two words: Lindamood-Bell. Check them out.


PaleMother said...

(Continued from above)

Early on, my son's young-five's teacher noticed some of his quirks and decided he had Asperger's. That didn't add up for me, based on what I knew about that condition, but I was afraid that I wasn't objective enough. NLD does have some overlap with Asperger's ... some say there is no meaningful distinction ... but he is not autistic (per his neuropsych) and his social skills are mostly intact (if you account for the fact that he sounds like an eighth grader and he talks right over his peer's heads a lot of the time ... and the fact that he has some motor skills and attentional impairments that make sports -- especially team sports --which are the mainstay of young male bonding in many school yards a significant weakness for him).

My point is, these issues do NOT submit to armchair diagnoses. They are also nichey and rare enough that teachers can teach for years without (knowingly) running across anything like it. Also, this is a true snowflake syndrome -- no two cases manifest exactly alike. So the meat grinder of one-size-fits-all education chews these kids up and spits them out.

In my newness to the problem, I think to myself, well ... if they can have a whole hallway in the district for kids who are all flavors of cognitively impaired ... and if they can have a whole section of one elementary school for the kids who are plain old "gifted" ... why can't they have services targeted to dylexics (who are often gifted in some areas)?

JMO you need an outside learning expert, a neuropsycologist, to do a comprehensive evaluation. The school will not provide that not point you to it unless you force it. And their own experts are not the best source of objectivity (they have a budget skin in the game). I am not familiar enough with wrightslaw.com yet, but I think you do have a right to an outside evaluation that they have to pay for if your insurance won't cover it.

If you want to chat for support or info, email me at faccialunababy@aol.com. I am in the process of transitioning my original blog to one where I can blog about these issues from the parent's perspective. I've just been up to my eyeballs this summer trying to cope with the implications of the new diagnosis ... as well as spending more than half my days driving around to the first of many expensive (read: financial security imploding) programs to remediate the dyslexia.

bereccah said...

Thank you so much for this information - we have scratched the surface with some of this but have just gotten into testing and evaluating with professionals from outside the school district. I am definitely investigating your tips. Thanks again for sharing!

PaleMother said...

We once asked a teacher whether dyslexia might be a possibility because my son reverses some numbers and letters sometimes and there is an age, of course, where that is no longer developmentally appropriate. Note: what the school will call appropriate and what the neuropsychs call appropriate are two different things (sorry to say, the school's definition does not serve the interest of the child).

This teacher was a wonderful teacher, smart, kind ... worked brilliantly with my son, worked hard on his behalf all year ... but she dismissed the possibility of dyslexia because, "He can read." Dyslexia? No way. Like us, she did not know what she did not know about it. And while the Kindy, 1st, and 2nd grade teachers have all tracked him as reading slightly above grade level ... we did notice certain quirks in his fluency ... a troubling lack of intuition with sight words -- words that you can't sound out phonetically ... and his pacing wasn't great when reading out loud. We just didn't know what that was and we didn't know we should be concerned because we thought the school would warn us if there was a real problem. This points to what I think is the moral of my story ... get the biggest gun clinical expert you can find in your area, because these problems are WAY above everyone else's pay grade.

My Dh had some issues with handwriting that he somehow "outgrew" around 8 or so. So we were also lead astray/falsely comforted by the family history. But what I know now (and that's not much) is that, where there is smoke, there is fire. Period. Hoping it will take care of itself is a great way to burn down the whole neighborhood.

Also ... second, third, fourth grade is about the time that dyslexics hit a hard wall -- if you are ~lucky~ (as in, finding out you have dylexia later in life = needless suffering and lots of it). Not saying your son is dyslexic. Just saying that in retrospect, I dismissed the possibility of an LD because I didn't know anything about the nature and the complexity of dyslexia and all the ways it can present. The school -- which I like -- did nothing to help ferret the problem out. In a perfect world, all schools would aggressively screen for emerging learning differences from kindergarten on. Unfortunately, if they find them, then they have to treat them and that costs money. If they just had a plan and a place for treating these kids (because there is always a certain portion of the population that will have it -- more than most people realize), it would be fine. But I understand that schools in most states do not.

Continued ...

PaleMother said...

Like you, (so far) I have a great relationship with my son's school. I'm a collborative kind of person; I know how to get the best out of people. Like you, I am ~dreading~ the school year because all of the veteran parents of kids like mine look like they've been through WWIII and they warn me how screwed we are if we try to get everything he needs from the system. They tell me the only solution is 1. pay for a truckload of lawyers to take our case to the supreme court while my child only falls farther behind ... or 2. drain our bank acount (in this scary economy, no less) with private solutions (I have three other kids ... have I mentioned this is very hereditary?). I'm terrified of the road ahead. As if the diagnosis itself weren't worrisome enough.

Since you have held your son back, rather than stress about that decision ... I'd use this "do over" year to do more than scratch the surface -- blast a hole and get to the heart of things. I delayed calling the neuropsych myself ... for lots of reasons. Denial. Concern about what it would cost (insurance ended up paying for 100% of the eval) and their long waiting lists (a stupid concern). Also, the facts and feedback on the surface lulled us into being less aggressive. On the other hand, I do think that in some ways, waiting a bit helped to sort out what he would outgrow and what he wouldn't. I think by waiting, it became really crystal clear that it was not Asperger's, which is the label a few armchair quarterbacks early on seemed so sure of (although a good neuropysch might have known even at 5, who knows?). I don't know if the "still developmentally appropriate/we have to wait and see" speech we got early on from a school evaluation was just an excuse the school used for not being more proactive and aggre$$ive. It certainly played right into our wish as a parents to believe that nothing bad was really going on. I will say that in retrospect, I know the ~school~ psych who tested my son at 4.5 was a total lightweight compared to this year's neuropsch, and as such, her results were probably not entirely valid. Testing these kids is an art and a science; it's not something one dabbles in.

At any rate, beating ourselves up is a waste of time, right? Throw away the rear view mirror. ~Facts~ are what will help. The bonus for being brave and getting it all out in the open is that once you know the boogie man's name ... you will be able to separate the ~real~ issues and challenges from the issues that are a side effect caused by the extreme frustration of being undiagnosed and not being taught in a way that maximizes strengths and remdiates and compensates for weaknesses.