Again I don't have much time, but here's a few more details:
They ran Connor through a series of "tests" and he cooperated perfectly. He really liked the nurse that was playing with him. After putting him through the assessment and talking to me, while we were waiting for it to be graded, the head evaluator (who is the Nurse Practitioner for the Dev Ped) said "So, who's worried about him? I don't have him scored yet, but he looks like he's doing SO great! Who thinks otherwise?" I don't think I realized how much I needed to hear that!!! It's one of those things that I *knew* that he was doing great, but too many others have put doubt in my head, you know?
So we got the score back, he shows only very mild delays in everything except speech, where of course he shows a significant delay (used to be profound, but is now only significant, and in receptive is only mild) We talked for a long time about his growth/weight gain, and she said that she prefers to look at the overall picture of the kid...height and weight are just two measurements of the dozens you can take into account. Developmentally he's progressing at a fantastic rate (once we got him into all his therapies), his head size continues to grow (and is actually rather large, but no one is worried about that), his height and weight have been following a general curve (it's just really low!), socially he's a bit reserved, but once he gets to know you, he's a bit of a goof and a show off.
She listened to my description of what happened at gastro, and she said that she hears that from many parents. They like to stick all kids into the same pot, and will tell a parent of a kid in even the 30th% that they need to add fat to their diet (the argumentative side of me wants to know what they would say about Ian, who is in the 70th%...would they tell me to LOWER his fat/calorie intake? If they're worried about kids on the lower side of the scale, they should worry equally about kids on the upper side of the scale... I'm sure they don't, hence the obesity epidemic in this country!!! Ian is not overweight at all, he's perfectly proportioned--just on the upper side of the scale. Well, Connor is proportioned pretty good, just on the lower side of the scale. What's the difference?)
Anyway, that made me feel a LOT better. She not only read what Dr Shprintzen had emailed to me, but also took my copy of his book to keep for a week or so, so that made me feel really good, like she's actually going to spend some time researching 22q.
Then we talked about speech. I told her what Shprintzen's reserach says...that 22q kids almost never have apraxia or oral motor issues, their speech issues are compensatory glottal stops because of their often severe VPI. When you use a glottal stop (speaking with your larynx instead of your pharynx) it appears as though you have oral motor skill issues because you don't have to use the facial muscles to speak that way. So if you use oral motor therapy (which is largely waht Connor has been in) you might get the kid to start moving their mouth (which is he) but it won't increase their speech or intelligibility (which it hasn't). In a year Connor has not added any new sounds to his vocalizations. He HAS learned to connect some of his sounds to objects to form word approximations, but there aren't any new sounds. But he sure is moving his face/mouth more. It's helped him a lot with feeding, so I don't regret that we've done the oral motor. But from what Shprintzen says, we need to be doing something else if we want him talking. But I don't know what that something else is!! His book doesn't say, neither does his webpage, neither does he in any of his emails.
THe Dev Ped gave us a referral to the Apraxia Clinic in Cinci. She said that they should be well versed in all the different communication disorders and will be able to tell us if Connor is one of the rare 22q kids who DOES have apraxia, or if we should be approaching his speech therapy in a different way. So thats' good! I have no idea how long it'll take to get in to see them.
I talked to them about my concerns with him approaching school age (he'll start EIS preschool in the fall, then public school--if that's what we decide--next March. We also have the option of sending him to a local Deaf school. I'm not sure at all which one is the best fit for him...what do you do with a child who is almost fully non verbal, signs very well, but also can hear?? Deaf school where his signing will be understood and accepted, or public school where they know only basic signs but he'll get verbal exposure??? I don't know.
Okay...it's taken me a LONG time to type this, as two little boys climb all over me