More Happenings

Last Sunday we had a playdate at a park with several of the other families that were in the university program around the same time as Elise. It was really wonderful to see everyone again and catch up somewhat. The kids kept us all busy, so we didn't get to chat much, but it was still nice to keep that connection going. I can speak for myself in saying that the support is very needed. I spoke with another who is totally in the same boat that we are right now in regards to the IEP. They have been offered the same school by the school district and also do not want it. They have been more proactive than us and have actually retained a lawyer. I have since been speaking with this mother and am becoming convinced that we also need to use a lawyer so that Elise doesn't end up segregated with other autistic children in a program that isn't optimally assisting her in reaching her full potential. Unfortunately, the program that I'm really interested in for Elise will most likely not be an option for her. I wanted the program I wrote about last week where she would be in a full inclusion classroom and B and she would be together. This mother also tried to obtain this program and was flat out told that it wasn't appropriate for her son at his stage of development. It was never even on the table for them. That's really disappointing for me. It's really important to me that Elise be with typically developing children. It's not just my "pride", it's just something that I KNOW she needs. She does not push herself in the same way when she's with other autistic children. She makes bigger strides when imitating other children than any other time. Obtaining this right for her is proving to be much more difficult than I ever imagined.

Elise's EEG was Monday and Tuesday. It was quite an ordeal, but we were well prepared for it. She was actually admitted fairly quickly. We only had to wait 1-2 hours for a room. It ended up being a shared room, but since she was only there for a test, it wasn't a big deal. I just felt sorry for the kid in the other bed because he was 10, in pain, and constantly being walked to the bathroom to try to poop while all kinds of people watched him and asked if he had gone yet. Poor kid. He was really embarassed and sharing the room with two adult strangers and an insomniac, autistic 3 year old wasn't helping him at all. Speaking of insomnia, Elise slept from 8 - 12:30 thanks to her melatonin dose. She woke and played in her bed from 12:30-4:30! It was incredibly annoying. At 4:30, she finally fell asleep until 7. It was a long day/night. The good news is that nothing abnormal was found. Her neurologist reiterated that the prescription for her right now is just intensive therapy, as much as possible. I have to admit that I had a measure of disappointment at again not finding a reason for her being the way she is. Hubby made an excellent point that has changed my thinking on this. He emphasized that, while we don't have an "answer", the answers are all pretty rough conditions that could limit her potential. As long as we don't have one of these "answers" we can assume that her potential is limitless. I thought that this is a really positive way to look at our situation.

Lately I'm really struggling with being frustrated with Elise's progress and worried about her ever developing enough to function independently and happily in the future. I've just been really scared and depressed about her future and the future for all of us. I'm struggling with feeling hopeless / powerless to help her. I'm constantly worrying that she'll remain one of the children that never learns to speak or communicate. That thought really terrifies me. I don't know what has prompted these feelings to take hold lately, but they do have a firm hold right now. Maybe it's because we've been having some rough times with Elise lately. She's seemed more distant to me and it's been awhile since I've seen her initiate interaction with us. She spent the whole time in the hospital lining up her toys, performing odd rituals with them and then starting a new routine. I was not allowed to insert myself into this "play" at all. I know it was her way to deal with the extreme stress. That's why I allowed it, but it was awful to watch. I feel a distance growing between us again. I feel desperate to be able to spend more time with her again. Last night, she threw a huge fit before bed. She was inconsolable and violent. When she finally settled a bit, I tried rubbing her back to comfort her. She physically stiffened by my touch. I ended up having to swaddle her tight in a big blanket, not touching her at all. That relaxed her so much that she fell asleep within 2 minutes. She then woke about 4 hours later continuing the same tantrum. This lasted for about 1 hour in the middle of the night. We have know idea why she was screaming. We finally put her in a blanket and swung her back and forth. That calmed her enough to stop throwing the fit. It was awful. There's really nothing else to say about that.

Our ABA parent trainer has asked that we stop hiding the little figurine toys that she obsesses over so that they can work on her hoarding behavior. Apparently she's doing well for them, but I feel like it's destroying us. She takes them to bed now and then doesn't sleep because she's so obsessed about them. She'll wake and spend hours "playing" with them. If one falls over when she wants it to stand, or something on that order, she'll throw a fit. I'm not convinced that we are approaching this behavior correction appropriately.

My acid reflux was terrible last night, I wonder why! Sorry this is such a downer, nights without sleep always make things seem so much more dismal. I need to get back to focusing on the positive.