Day Seven: Staff, Observing, Therapies

Staff: One of the hardest parts about last week was that we started this program during Spring Break. That meant that the psychologist was gone all week, the program director was off a couple of days, the speech therapist was off a couple of days and the OT had a class one of the days on top of trying to cover feeding sessions for others. Each session was covered by trained individuals, but it was very confusing and disheartening for the parents. I think the kids were less affected but since it was the first week anyway, there is no way to tell if they would have done better with consistency or not. Anyway, today finally everyone is back and I'm feeling very good about the staff here. I had my first observation with the psychologist this morning. This was very helpful to me! I really like the ST and OT also. I'm more confident in the program now that they are all here and consistent. I would have preferred (and the other parents concur) that we would not have had the staff changes on the first week and that the program just be delayed a week instead. I suppose that's an issue they would have to address on the calendar year planning not just session to session, but it's a given that spring break might be a time to avoid in the future.

Observing: We were watching a feeding being done by the speech therapist through the observation window (mirror on the feeding room side) while the psychologist explained what was happening. At first ZZ was watching a video and taking bites (dips I think) of fruit cup puree. After a few he started refusing, crying, asking for mom, etc. The video went off and she kept prompting him to take his bite. After a while she pulled a toy from the shelf and started playing with it herself. He would stop crying obviously interested in the toy, but as soon as she put the spoon back up and told him he could play when he took his bite, he started into the crying, etc. again. It felt like a very long stand-off, but I think she said it was 12 minutes. There's never actually forcing and when the timer goes off the feeding is over. So far with ZZ once he starts refusing he has continued to do so through the rest of his sessions. I didn't observe anymore today. Now that the psychologist is back, she said she would like us only to observe when she is with us.

Therapies: OT was testing to day, I think she said it was the Peabody Basic Skills test, I remember this one from my days as a Special Education teacher. ST went well except the last 30 seconds. She said she did the oral stimulation with the nuk brush, added pureed fruit to the brush, did dry spoons, did water spoons and then went to pureed fruit dips. ZZ did great until the end and even took 10 bites of the pureed fruit before spitting it out. When he spits bites out they put them back on the spoon and present it again because this is not an acceptable habit. Then he started refusing. For his OT feeding I went past the room and glance in noticing that he didn't have his shirt on. Hmmm... that didn't seem like a good sign. Well, yes, he had a 17 minute stand-off because here again she was having him take a bite he had spit out. Besides crying and desperately asking for me, his refusal habits including playing with his shoes, so off they went and hiding in his shirt (the reason it was off). Anyway, he came happily running to me at the end. We'll see how this afternoon goes.

Update on the afternoon: The afternoon feedings are actually done by the psychologist and I asked if I could observe. She said I could. In the first feeding the refusals with all of the above reactions started from the beginning. She was feeding him tomato soup, but she told me later that she started with a dry spoon. After some time I could no longer watch and went down the hall. When I went back he had stopped crying and was watching the video and taking his bites. I kicked myself for leaving and asked her later what she had done to get him started. She said it was pretty small, but he opened his mouth for her enough that she put the spoon in and called it a successful bite. That way she could reward him and get the ball rolling. It didn't last long though. After a few successes with the soup, he spit it out and refused the rest of the session. For the last session I heard him crying right away, and I gathered our things so we could make a quick exit when it was done. I observed the last agonizing half.