Friday, February 8, 2013

New ABC's

{CAUTION: This is freaking long and complicated.}

For the past couple of years, we have been through evaluation after evaluation with my daughter Bailey. She's almost 6 years old. Her most recent evaluation was with Developmental Pediatrics, and I was nervous.

Part of me expected them to come back and say something along the lines of "She's a normal 5 year old, just a little hyperactive." Which means that I'm just a weakling and can't hack motherhood... cause this junk is HARD. Though part of me knew better. Intelligence is not the issue. She is smart as a whip!   Behavior, emotions, and attention/focusing are the issues... which sounds pretty basic, but IF ONLY you knew the behavior and emotional side of things, you'd realize it's not just your run of the mill problem.

Anyhow, I will not bore you with all the lengthy details, I've written them out and answered questions for months now, over and over, and I don't have it in me, to do it again right now. SO, I will give you a brief synopsis of what we found out.

Her ADOS {test for autism and autism spectrum disorders} score was a 1, which 0 being the lowest, that was quickly ruled out. They did A LOT of intelligence testing. Her verbal score on the IQ test was a 124; that's in the 95%. I jokingly asked if we were talking MENSA smart here, and he was very serious when he said, "well, it's pretty close". So basically, what this means, is my kid is a genius. YES! Okay, so that is her VERBAL score.

I'm not looking at the report right now, so I'm just going to explain the next part as best I can, because here is where things get fun/fuzzy/clarified/complicated... you get the point.

The other part of the IQ test {the non-verbal portion} she originally scored in the 40's {I think it was a 44 or something}. So, they did another test, she scored a  77, then they did one more similar test, and it was like an 81. These are very low scores. These scores are 2-3 standard deviations lower than her verbal score. This is apparently, a really big deal. He said he's never seen a gap that large, ever, and that he's tested thousands of kids of the years. Hence the reason for the 3 different tests to make sure it was correct. Our spunky girl sure likes to break the molds.

What this brought to the surface {thankfully!} is that she has NON VERBAL LEARNING DISORDER  Syndrome. I've only read a little bit about it but basically, it's neurological and affects the way the right hemisphere of the brain functions. She is excellent at processing information verbally, she talks so much because that's how she works through information. All things visual, she doesn't even pick up on. This is where the social issues come from... and explains why she doesn't pick up on any body language or social cues. Especially, when most communication is non-verbal. So most things visual, she just isn't  processing... also the reason why she her motor skills were so awful when she was younger. From the little bit I've read up on it, it's the opposite of dyslexia. I'm not sure how exactly... I've got some more researching and reading to do. The doctor was great {Dr. Walker}, he said to feel free to give him a call or email him with any questions we have, because well, it's a lot of information to take in at one time.

ADHD, is very apparent and seems to be real, especially given that there is a family history on both mine and Jeffrey's sides of the family. This is pretty obvious, anyone who knows my kinky haired girl, can vouch for this! And in fact, the past week or so, I've had the next diagnosis in my mind as well.

ODD {Oppositional Defiance Disorder}- This can sometimes go along with children who have ADD/ADHD. He said that given the reports from both me and her teacher, this is a valid diagnosis, but with everything I've reported, he thinks it could easily be a possible mood disorder and the frustration of  not being able to focus, and channel/control her emotions is manifesting itself as the ODD. So he recommended that we have her evaluated by a child psychologist, to either confirm or rule this out. Then we will know exactly what it is we need to treat and we can retest her IQ in 6-12 months and see if the gap has closed with the NVLD syndrome.

So, in a nutshell... here you have it. I'm sure there are tons I'm leaving out, but this was the bottom line. So, basically, we have more evaluations coming up, but she's been through a lot so I'm going to wait a little while.

Trevor {3} just had his evaluation and started OT {Occupational Therapy} this week. So that's two a week for him and right now, one for Bailey, though I'm going to look into some social support type groups that can help her build the social skills she needs. So, fun times. Here I was thinking things were going to slow down here soon, not likely.

Thanks for tuning in!
I will post more in depth about the ODD and NVLDS when I learn some more about it.


  1. You may want to look into Learning Rx which is cognitive skills training. It will help with visual processing and a variety of other things. There are several centers. I don't know where you are located, but it is very helpful.

  2. Kylee, We have more in common than I originally thought. My daughter, Bella, is only 3 but I have had some concerns. Read

    I still have not taken her because she has been acting a lot better lately. I do not know if it was a phase so I guess time will tell.

  3. Kristi- thanks so much! I will definitely look into it! We are in Jacksonville, Florida :)

    Jennifer, wowza! Bailey goes through phases, the awesome phase being the shortest unfortunately, It's a hard call, because any transition or stressors can throw them off of their game, I just got desperate, and she wasn't improving a whole lot which is partly my fault, but the real kicker is her two younger brothers mimic her behavior... they don't know it's the exception and not acceptable :/ fun times!

  4. I just stumbled upon your blog, and thought I'd wish you luck! I'm a special ed teacher, a profession I got into after growing up with a sibling with NVLD. You've done a wonderful thing being so persistent and having your daughter evaluated early on- NVLD and ODD go undiagnosed too often, which causes bigger issues later on. I usually recommend that parents of NVLD kids celebrate every teeny tiny victory they see, and seek out counseling and social support groups that will help their little one thrive. As for resources, I LOVE for information and support services aimed towards parents and teachers- i.e. no medical mumbo jumbo!

  5. Kerri- Thank you so much for your kind words! We are lucky they caught it. It was mostly because of the discrepancy between her verbal and non- verbal IQ scores. So far it is mostly affecting her socially and behaviorally. She is able to do her school work fairly well... though, we get a lot of work home with "not paying attention" on it. thankfully. Because, she is able to do her work, I'm told that she might end up in a regular classroom next year... which I can't for the life of me understand. I'm pretty sure she would fail miserably. Fun times! Thanks for the website and tips, I'm definitely going to check them out!!

  6. Hi, you might be interested in checking out this link

    I work in special ed and read a great book called Disconnected Kids that is all about when our brains are out of "balance" it causes all sorts of problems for us in different areas of life - ADHD, Autism, social & learning issues, etc! Super interesting - maybe fitting for your situation, maybe not, but definitely worth checking out I think :)