So Hallie's new OT (subcontracted through the subcontractor who handles 3-5 early intervention services in Philly; don't get me started on how badly the transition is going from the old service provider to the new one because this is a saga in and of itself) was just at the house for the first time this morning. She seems to be on the ball (was one of the people who helped establish improved early interventions services for the 3-5 kids in NYC 12 years ago) and had lots to say. Alas, none of what she had to say made me feel any better, though.
The first thing she noticed was how low tone Hallie is throughout her entire body (which we've obviously heard before). But what surprised her is that Hallie has never gotten rid of her infantile reflexes and is doing some stuff that a 6 to 10 month old still does (mirroring actions with both hands when one will suffice is one example of this). No one has ever mentioned this before and consequently no one has ever worked on getting Hallie to respond more maturely. On top of this, she noticed that Hallie was not visually tracking or processing properly and that Hallie was more or less functioning at a delay of 50-75% (so at the level of a 10 month to 2 year old). This shouldn't surprise us, I suppose: both Sharon and I have noticed over the past few weeks, especially, that Lea's movements are more fluid and coordinated than Hallie's and that she can do more stuff than her sister can. Lea turns 18 months in 10 days.
She was appalled at Hallie's IEP and is going to put in for more services---which was what I advocated for when we held Hallie's last IEP. At least this time I'll be getting some support from the OT, who is personally going to advocate for this and arm me with much more detailed developmental charts detailing precisely how far behind our kid is in concrete and explicit terms. This should help me make my case.
But it's so damned frustrating: we are doing everything we possibly can and are great on follow-through but if the 'professionals' who see Hallie aren't doing their jobs and 'dumbing things down' (for example, no one ever told me that a 4 year old is supposed to be able to jump forward 24 inches and land on two feet. Hallie just mastered jumping forward 6-8 inches and landing on two feet, which is what a new 3 year old can do). Apparently her OTs and PTs have been treating the symptoms more than the underlying causes and it makes sense to me that one needs to treat the base of the problem and build from there rather than treat the problems that the underlying weaknesses engender. That's what we do in Floortime, and that's been key to a lot of gains for Hallie this past year (BTW, she is doing amazing pretend play these days with scenarios that she is initiating with us, which thrills us no end).
Anyway, I hope that the new OT can actually help us get Hallie the appropriate services at the appropriate level. I suspect this may take some fighting, and I'm good at that (even if it's exhausting to me). Hallie's a bright little girl whose weak little body doesn't work in the way that it is supposed this. This is getting in the way of progress, and from what the OT said (and again, this makes enormous sense), her physical problems will engender cognitive problems (I suspect that this is at the root of her autism diagnosis, which is again a point that our Floortime/DIR guy is fond of making).
It's just so hard to see/hear all of this and I feel so helpless in the face of everything. I know I'm just wallowing a bit right now and that Sharon and I will do what we need to do to help Hallie--that's what we always do. I just wish it were easier sometimes.