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.