Friday, January 11, 2008

That KayTar...

She's doing better. Much better. Drinking, peeing, even eating a bit. No more fever either. Of course, she's staying up until midnight whether she naps or not. And she lies in bed hacking until she gags for a goodly amount of time each night, but at the risk of jinxing myself, she hasn't actually night-vomited since we moved her to the big girl bed. Weird, eh? (now watch, I'll be back tomorrow saying "She puked all over her bed, damn you, JINX!") Maybe she thinks it is too pretty to defile with copious puking. Who knows. But last night was the first night in two weeks that I've fallen asleep beside my husband and woken up with him still there. We've had revolving beds lately. But at least there has been some measure of sleep. That is a good thing.

She's speaking in crazy lengthy sections of speech. She's fooled me into thinking she was creating spontaneous speech on quite a few occassions, such as this one; she was crying in her bed and said, "I'm sad because, ump, (ump is her FAKE audible pause) my Bionicle toy." So I thought, "WOW! That is detailed and spontaneous!" I fetched her a small Bionicle and she continued, "I'm sad because, ump, my Bionicle toy es BROKEN." It clearly was not broken and she was clearly mimicking her brother's sobbing earlier in the day over his toy falling over. But it took me THAT long to realize she was parroting. Honestly, sometimes I have no idea where that distinction lies anymore. She is so fluid with it, convincing even. Other phrases she has clearly lifted, but uses with skill include "Why not?" complete with whining voice. She has NO clue what this means. None. But she says it, oh-so-convincingly. Also, "I can't do it!" which is purely mimicking her brother's all too frequent statement. And "I'm too shy." She's not. She doesn't know what shy means, she just knows that BubTar says it with emotional inflection and she digs that sort of thing. She doesn't just copy words, she copies everything, intonation, pauses, audible pauses, mannerisms, the whole thing. It is really masterful. I think she understands a lot more now, but she also parrots a lot more and I think the percentages are still very skewed. Sometimes the repetition is very obvious, like on the way to get BubTar today.

KayTar: We hafta go bye-bye?
Me: Yes, we ARE going bye-bye.
KayTar: We hafta go bye-bye?
Me: Yes, we ARE goibg bye-bye, we are in the car.
KayTar: We hafta go bye-bye?
Me: Yes.
KayTar: We hafta go bye-bye?
Me: Yes, KayTar. We ARE going bye-bye.
KayTar: We hafta go bye-bye?
Me: Yes.
KayTar: We hafta go bye-bye?
Me: Yes.
KayTar: We hafta go bye-bye?
Me: (silent)
KayTar: We hafta go bye-bye?
Me: (silent)
KayTar: We hafta go bye-bye?
Me: (silent)
KayTar: We hafta go bye-bye?
Me: KayTar, let's be very quiet, okay?
KayTar: We hafta go bye-bye?

Hyperlexia is not a stand alone diagnosis at this time according to the party line of the medical/behavioral community. I've talked to therapists and evaluators and no one can help us get a diagnosis for it. I was really frustrated when I discovered that, because, it is just so descriptive of her. I can't understand why children who have this specific issue have to be given a primary diagnosis of autism or PPD-NOS or ADHD just to qualify for services. Most of these parents feel strongly that hyperlexia alone is the issue, but because the medical community hasn't accepted it as a singular condition yet, alternative primary diagnoses are commonly given. Well, in all my researching, I kept seeing something called Nonverbal Learning Disorder in conjunction with hyperlexia. And I had largely ignored it because, well, KayTar isn't nonverbal. She is VERY verbal. Oh, so verbal. She's gone from a silent signing kiddo to a limitless audio recording machine in the past year. But I finally delved into it, just because I repeatedly saw the two conditions connected in research. And this is what I found. (From this link)

Three broad categories of problem are often observed in children and adults with NLD:

1. Motoric dysfunction - lack of coordination, balance problems and difficulty

2. Visual-spatial disorganization - poor visual spatial analysis, disordered spatial perception, and difficulty with spatial orientation

3. Poor social cognition - difficulty interpreting non-verbal social cues such as gestures, body language and tone of voice; difficulty adjusting to transitions.

Common characteristics of NLD include but are not limited to:

* Performance IQ significantly lower than verbal IQ

* Precocious speech & language development and verbosity at a young age

* Remarkable rote verbatim memory

* Precocious reading decoding ability (Hyperlexia ["word calling"])

* Strong spelling from dictation but poor writing and written work organization

* Math disability

* Poor coordination & balance

* Poor fine motor skills

* Poor visual-spatial part-to-whole perception

* Difficulty comprehending novel material

* Deficits in social interaction

Some if it she is definitely too young to exhibit, some of it doesn't quite fit, such as the poor fine motor skills, but much of it is very descriptive of our wee girlie. So our new plan is to have her evaluated for NLD with a secondary of hyperlexia, because hyperlexia is accepted as a secondary diagnosis. The NLD even goes so far as to cover her really terrible balance and delayed motor skills. The pediatrician is looking into finding a colleague to evaluate her and we're hoping to get her in before her rescheduled district evaluation.

I want to clarify that we are not seeking to labeling her for labeling's sake. I know that a label changes exactly nothing. It is merely and adjective used to describe facets of KayTar that we are already aware of and function in. The merit of such a label is in the assurance of state services and also in the ability to explain KayTar to others in fewer than a thousand words. When I speak with someone new about her, even therapists and specialists, I have no way to neatly package her various and sundry issues. Having an umbrella to cover all the quirks would be a bit of a relief in that sense. I'm sure with laypeople we will still have to explain things one at a time, because they might not understand labels, but in dealing with people in a professional arena, a handful of neat and tidy summary words would be quite an asset. And so this is our next investigative step. It might not pan out. The label might not be a fit, and that is okay, too. But we'd still like to pursue it and find out for sure. As hard as it is to have someone label your child, it is also hard to know something is wrong, have it confirmed over and over again, and still have no way to ensure proper services or treatment for it. So we will keep looking, here and there, until we find something that fits.


painted maypole said...

glad she is feeling better. This is an awful lot for you to have to wade through.

By the way -i tried e-mailing you but it got returned. Would you please contact me at pntdmaypoleATyahooDOTcom? I'm going to be out your way in a few weeks and hope we might make time to meet.

motherbumper said...

High five for no vomit.

As for the labels, if it gets the services and insurance in order then so be it. The danger lies in those who pigeon hole the "labelled" children - and you are not one of them, that's for sure.

xo to all - from the bumps

Janet said...

You are such a fierce advocate for that little girl! You go, mama.

NotSoSage said...

Soooo glad she is doing better.

You constantly amaze me with how observant you are about KayTar's language development. Really, I'm floored. She is so lucky to have you (and you, her).

Anonymous said...

I am happy to hear she is better. I hear speech repetition in my house too. It's hard to get a handle on, but you are amazing. Hope more sleep comes your way.

Gretchen said...

I know how much the label means--for just the reasons you state.

Is it known how or why hyperlexia occurs?

Glad she seems to be on the mend!

flutter said...

I call her beautiful, but I know that doesn't help for treatment's sake.

But she is, I am sure you know.

Anonymous said...

So glad she's better and you're getting some rest.

I totally hear you on the issue of labels and services. But I am really confused as to why a diagnosis that begins with the term Nonverbal would include Precocious speech & language development and verbosity at a young age!

Do you by any chance want to be a pediatric nurse Kyla?

Mad said...

This seems like you're at least barking up a decent tree. I'll be interested to see where the evaluation takes you.

Junie's Blog said...

ahhh the dreaded label . . . sometimes good . . . sometimes not so good. I never considered NLD for Kaytar but it does sound very feasible! I hope hope something will come of it, if only to get the services that she needs.

Don Mills Diva said...

So glad she is doing better - she's lucky to have you in here corner mama.

moplans said...

Would you be surprised I've got NVLD on my short list for secondary diagnoses for Julia? Another mom of a kid with Sotos mentioned it to me as people have the same experience with Sotos you have with Kaytar in that they don't fit neatly into a box so accessing services becomes an issue.

I'm so glad to read you got some sleep. I am sure you can imagine the swearing I was doing after reading your comment about double doses of chloral hydrate. ug.

Family Adventure said...

Kyla, my youngest has been diagnosed with a non-verbal learning disorder (even my oldest has a mild case of it). As you've figured, it doesn't mean that they are non-verbal...just the opposite - it means that they do better verbally than non-verbally...for instance, B boy may eventually need school work read out loud to him. It can be difficult for him to comprehend things that aren't explained to him verbally...he also has poor fine motor skills, he has poor visual-spatial skills...

B boy has some other issues as well (ADHD being one of them). However, he is the sweetest little boy to me, and despite all these fairly serious setbacks, he still tested extremely high on his overall IQ. I was amazed when they told me this, because this is a child who refuses to write because he cannot hold his pencil properly.

And yet these people were able to not only measure his potential, but also give me suggestions/solutions to several of his issues.

I'm just saying this last part for you to know that even though there may be lots and lots of hindrances, there's people out there who can help you get the best out of KayTar. I know you'll find them, but sometimes it can be so disillusioning. Sometimes you might feel like you are all alone in this. But you are not! There's people out there who can help, and you will find them if you keep looking!


dawn224 said...

Bleah. Yes. This NVLD label sucks - because the average person doesn't know that "Nonverbal Learning Disability" translates out as "a learning disability that ain't got nuttin' to do with language skills, cuz them language skillz rawk"

A PDD-NOS label may get you more/better services because it's more ... intense?

Does Texas have an "Other Health Impaired" (OHI) label/category?

(I'm going to quit reading now - every time I read a post I bombard you with a bunch of questions - feel better email me if ya need to as this whole eval lala goes on)