When Development Happens Differently

Well, here it is, the big development post. I have a few moments (I HOPE!) while both kids are down for their naps, and if I don't begin this now, I doubt that I'll ever write this post. I've sort of been dreading it for days.

Let's start with the good stuff, which is not in the evaluations that we have received for Hallie. First, Hallie really is beginning to expand her language spontaneously. She is singing songs to herself these days (three favorites are the ABC song, of course, and Old MacDonald's Farm, and the theme to Elmo's World). We're also hearing more several-word phrases ("big, big, red firetruck!" is for some unknown reason a personal favorite of hers right now; but she's also using a lot of modifiers for lots of different nouns and asking for things using multiple word constructions that are far from rote "put it on!" "push me, Mama!" "i want circle icey"...since apparently she prefers the storebought ice to our icemaker's rectangular output). We have also been sitting her down and asking her "what" questions and, if she is paying attention to what we are saying, she can answers these accurately most of the time ("what is Caillou riding?" we inquire and she retorts, "a bicycle." "What is on his head?" to which she says, "a helmet."). It's also clear that Hallie is reading a greater number of words than we knew she knew. We knew about "dog," "baby," and "bus" but it turns out that she can read "cat," "water," and several others. She also can recognize what words are from their signs. She has ASL flashcards with the sign and word on one side and a picture and word on the other. If she knows the word by sight, and you cover the sign, she can tell you the word just from the letters. If she doesn't, she pushes aside your hand, looks at the sign and tells you what it means. We own around 50 of these cards and she knows most of them and understands the concepts that they represent. Yesterday, I sat with her on the bed and played with them with her (they are among her favorite toys). I asked her what and function questions like "which one do you drink?" giving her a choice between water and cracker and "which one barks?" giving her a choice between duck and dog. She got 11 correct out of 11 and then lost focus.

Which brings us to one of the main issues that we are having with her right now, which is that of attention. She has no problem demonstrating attention and joint attention (with us) if she is interested in a task or game but as soon as she loses interest, which is often only after a minute (yesterday's game took two minutes or so to complete, so it was an extra long engagement for her), she starts to stare off into space, doesn't seem to care about the answer being right, dumps all the lacing beads, etc. She has a longer attention span for sensory activities (burying herself in balls or stuffed animals, jumping up and down on the couch, swinging etc), which is not terribly surprising given her sensory seeking profile, but we are at a loss as to how to improve her attention span and are beginning to think that ADHD seems like a diagnostic path down which to consider barking.

So those are the good things, and the guarded things. The bad things are the ones that are contained in her evaluations. It turns out, according to the Multi Disciplinary Evaluation (MDE) done by the agency to which the Philadelphia School District outsources its testing and service coordination of 3 to 5 year olds that, on average, Hallie is 32% delayed. The delays break down as follows:

1. Social/Emotional Development: 68% (32 % delay)
2. Adaptive Behavior/Self Help Development: 76% (24% delay)
3. Physical Development: 74% (26% delay)
4. Cognitive Development: 76% (24% delay)
5. Communication Development: 65% (35% delay)
General Development: 68% (32% delay)

In other words, at 34 months, she came out as being at around 23 months developmentally. Our big fear is that things will get worse if she remains this far delayed down the road (think of a 9 year old acting like a 6 year old and you get the picture). Some of the delays will undoubtedly improve if she gets services; for example, our gross milestone-meeting kiddo has never had PT and needs it desperately. No one seemed to care that the quality of the way in which she was meeting some of those gross motor milestones was substandard (for example, scoot-crawling rather than up on all fours, running with arms out way beyond when you are supposed to, and falling when there is the slightest unevenness to the surface, such as the transition from pavement to curb or pavement to schoolyard mat). PT will no doubt help her with this. But lingering in the back of my mind, at least, is whether Hallie has a mild and undiagnosed case of CP that prevents her from doing stuff like walking up and down stairs unassisted (she cannot do this, even if holding onto a banister) or pulling herself up on playground equipment. She wants to do these things but cannot, and so she compensates (she will resort to crawling the stairs) but she also does get into physically dangerous predicaments (like getting halfway up the monkey bar ladder and then having her strength give out). It makes it impossible for me to take her to the playground without watching her constantly and heading up the equipment with her, which is impossible for me to do if Lea is strapped to my body, and so we don't go to the playground unless someone else is watching Lea. This totally sucks because it also means she gets less practice and work out time to help build the strength she needs.

Of greater concern are the cognitive, social/emotional, adaptive, and communication delays. I do think that they underestimated Hallie's receptive skills by a considerable amount (her CHOP evaluation at 33 months placed her cognitively at 26-27 months, which we felt was far more accurate), but even so, she is not quite doing the stuff that a kid her age (even her corrected age is doing). One of our senses, given the recent Sensory Profile we had done, is that her sensory issues are getting in the way. She scored as definitely under-sensitive to Auditory Senses and as having an impaired Auditory Processing Function. This means that "Hallie almost always requires others to speak loudly in order to get her attention and is distracted in noisy environments. She frequently requires tactile cues in order to attend, ignores others when they are talking, finds ways to make noise with toys, and requires increased time to respond when her name is called. Auditory processing deficits may impact Hallie's ability to attend and participate in functional activities until completion." They will definitely make it harder for her at school.

She has a probable difference in visual processing, too. She likes looking at herself in mirrors more than others do, she loves bright and fast paced shows and frequently avoids eye contact.

She has a definite difference in terms of her tactile processing. Which means that she enjoys playing with food, splashing, finger painting, etc to distraction and this is what causes her to dump blocks on herself, bury herself in stuffed animals etc. She is seeking out sensory stimulation to get information she needs in a way that other kids don't need to do.

Her vestibular processing also comes off as definitely different. She needs to swing, jump on trampolines, spin, be bounced and tossed around on therapy balls to get the vestibular input she needs to calm herself. One thing we've been trying to do is give her this input before she attends to a close, fine motor table-top task in the hopes of improving her attention on the latter task.

And of course she has oral sensory processing issues. Some of these are related to her food issues that are medically based and are getting better over time. We can only hope that she stops putting toys and other inedibles in her mouth and starts putting more food in it (and sensing that it's there...she has been doing some food pocketing lately that is worrisome).

Anyway, a lot of the sensory issues, taken in combination with the communication/language issues have made Hallie seem pretty spectrumy (as in ASD). Right now, she's cleared of this, but depending on what happens next, she may well find herself back on the spectrum.

Meanwhile, we need to figure out how to help a kid like ours learn in school. Staying on task and communicating are the issues that I am focusing on right now, but that's just the tip of the iceberg. Meanwhile, I've had huge knots in my stomach and a major headache in anticipation of the IEP that is upcoming on Wednesday. Things have not gotten off to a good start with the agency handling 3-5 year olds in special education (this is a major understatement) and I have an impending sense of doom and dread. I am hoping that I am just being my Telly-like self (as in the Sesame Street character) and that all goes better than we fear it will and that we get the placement we want. Check back later in the week for an update (if I have the energy and emotional capacity to do one, that is!)

Meanwhile, I'll leave you with a brief update on food and vomiting. We made it to 90 days and then, likely as a result of some Burger King Chicken Fries, had a horrific day yesterday. Still, a 15 day run of no vomit seems pretty good to us and Hallie seems to be on the mend today (and is getting a very nice nap in, too, which she really needs considering that she woke up at 2am on Sunday and tore her room apart for three-ish hours before falling back asleep and had a really awful day yesterday that involved two bouts of vomiting).

And, for those of you who tune in for the pictures, I will leave you with this charming photo of a sisterly stretch: