The Annual IFSP

Today was one of those days. We're entering a heavy appointment season, with GI, ENT, Ophthalmology, Pulmonology, and another dentistry evaluation all in the upcoming week. Oh yeah--and a weight check. For those of you keeping score about number of days in doctors' offices, that's 7 out of the next 8 days. Great.

But first we got to do our only in-home evaluation: the Annual IFSP. In Philadelphia they use something called the DAYC (Developmental Assessment of Young Children) tool, and I am not sure how it rates relative to other similar diagnostic tools, but I can say that this is not one test that Hallie managed to ace. Indeed, even though she has outlier skills that don't get assessed by this tool (she can recite the entire alphabet, count to 20, catch a ball quite well for a toddler and other skills that no one cared to take into account), she otherwise came in with a 30% delay in ALL areas. Yes--ALL areas: gross motor skills (cannot walk up and down steps or negotiate curbs); fine motor skills (cannot draw a circle, doesn't hold down paper with her other hand when scribbling; can't really use utensils to feed herself); receptive language skills (could not bring us one shoe, though she would happily run over to shoes and put them on and say 'shoe'; cannot tell the difference between heavy and light and big and little); expressive language skills (very little spontaneous two-word-plus sentences); and social-emotional skills (does not pretend play in any meaningful way, will not play in an age-appropriate way with two or three other kids, cannot self-sooth or self-regulate, etc. Forget about toilet training; that one we're not even close to beginning). So our 30 month old is at the level of a 20-21 month old across the board. That's a 30% delay in all areas.

This was really hard to hear. We know Hallie to be socially eager, intellectually curious, book-loving, and someone who tries to figure out cause and effect and how things work. We also know that she has an expressive language delay, feeding difficulties, and seems socially younger than her peers. But we don't think of her as globally developmentally delayed and we're not even sure what to do with that.

We know we can, as a family, work on a whole bunch of the deficits. Just like we've taught her colors, shapes, letters, and numbers, we can teach her relative concepts and try to help her along in the imaginative play department. We can also work with her on climbing the steps (we've been doing this, holding hands, for a few days already--on Hallie's initiative--and we've already made great strides on this. It's just not enough to try--you have to master the skill to count it in the DAYC). But facing down everything, plus the medical stuff, all at once is a challenge. We're up to it--we have to be up to it. But that we have to do all of this doesn't make the reality of these delays any easier to deal with emotionally.

Anyway, we're now facing the addition of more therapies--not paring down on therapies--as Hallie gets closer to aging out of the birth-to-three system. If we tried to address everything at once, that would amount to seven therapy sessions a week, which is way out of control, so we'll swap out one speech session a week for feeding, work on PT with our OT and see about adding a formal PT, adding in a weekly Special Instructor to teach our kid how to use her play kitchen, swaddle babies, and pretend to be something other than just a toddler, and have consults with nutrition and social work fortnightly on top of everything. We'll try to get some of these gaps closed by the time the IEP (for transition to 3-to-5) testing in March rolls around. But we left the meeting with a sense of foreboding about the future and a fair deal of shock. Like I said, I expected delays, but not so many and not by so much. And though I know that she's doing well, I hate it that we always and still have to add "for a 23 weeker." I know intellectually that the circumstances of her birth are hard to live down, and that one should not expect not to adjust her age until she's four--even though the doctors and testers stop doing this at two. But still...

Otherwise, it's been a challenging week and eating is still going poorly and Hallie's reflux, for no apparent reason, seems out of control. We finally picked up the metronidazole from CHOP's pharmacy and will start that tomorrow (hopefully with fewer adverse effects than we typically see with antibiotics) and we're going to pick up the Axid our GI called in today and start that tomorrow as well. And we're trying to get Hallie onto a better schedule to see if being more rested helps address some of the out of control sensory-seeking behaviors we're seeing. And we're going to try to break her of some of her bad habits (food refusal and throwing; object throwing; disorganization generally). Hopefully some of what we try will work and help and we'll pull things back together around here and finally be done with the crisis we've been in now since at least some point in October.

Oh--and we'll enjoy our sweet girl and love her and cherish her. That's probably the most important thing we'll do, and keep doing.

I have some cute pictures to post and other upbeat stuff to say, but I'll do that separately in another post later.