Last Monday was Eden's IEP, in a nutshell, it's her annual review. We (all her therapists, teachers, case workers, and even my BHP(in-home support) sit around the table and discuss progress of the last year, evaluations, therapy changes (if any need to be reduced or increased in frequency) and goals for the up-coming year. This one is a little different than last year because in September she will be going to kindergarten. This meeting gives the school system an idea of what services she will need in the classroom and at school.
Eden has made incredible progress this year. Her evaluations showed that she has met all of her previous goals and all new goals had to be set. I told the person from CDS (Child Development Services) how much she has improved at home, and that I believe that it is because we have finally found the right equation of therapies, school and I am a better trained parent to finally make it all work. She is now thriving, talking, learning, playing and happy. So, just to sum the meeting up, she's doing very well, most of the therapies are staying the same with exception of her Speech Therapy because she is testing in her age range (on the lower side but still testing at about a 5 year old speech! YEAH!). That will be cut to one hour a week with lots of social communication help and help in the classroom.
We talked about summer services, which is something we didn't talk about last year but due to budget concerns with the state we wanted to have their end covered if something happened to the "medical" part of funding. Billing for services like schooling/Developmental Therapy is very confusing and I don't even fully understand it so I would even attempt to try an explanation.
The next day was Valentine's Day and she had a great day at school. Dinner that night was filled with behaviors. She wouldn't sit and eat even when there were preferred food choices on her plate and mid-meltdown she dumped my wonderful steak dinner that my husband cooked for me all over the floor. She didn't eat, had multiple bit attempts and had an even tougher time going to bed and ended up just being put to bed screaming. The day ended with me eating whatever was leftover from dinner and on the verge of tears.
She has been having frequent meltdowns this past week and weekend. School has been off and on when it came to behaviors. She isn't eating lunch or much else at school either. She's eating her hair like crazy and I don't know what else she's eating when I'm not looking so I'm sure their will be some interesting things coming out of her this week as well. Her new thing that she does is either spitting at people and/or sticking her tongue out and spitting that way (Oh boy do I hate spitting). Ed and I have had battle after battle at dinner time, getting dressed in the morning, transitioning to and from the car and going to bed.
We did have a wonderful time going to church this weekend. We went to a pancake breakfast and she sat through the meal, asked for breaks when she needed them. We brought her noise canceling headphones for her and she also used them very well. She asked for a walk and Ed took her for a walk around the block He's always very thoughtful about getting her out of situations when she is having a difficult time or over-whelmed. I'm not sure if it's because he wants to avoid an embarrassing situation or because he knows she needs a break. Either way it works. She handled it all very well, using her words and having little to no behaviors.
Today, we had a day off because of the holiday (President's Day) but we still had our in-home support (BHP) and OT appointments. She first gave me a difficult time getting dressed, she did end up getting dressed all by herself, and when she is having an off day that is an accomplishment. Our BHP took her outside to play for a while and Eden got to play in the puddles of melting snow. She came back all wet and requested we take off her boots and snow pants before we headed to the grocery store, so we could get back in time for her OT appointment.
This is where everything fell apart. This is where she turned into that child that I don't understand. There she was taking her soaked boots off and then we asked her to take her snow pants off. She refused, but they were soaked and she said she didn't want to have them on anymore. We didn't want to argue with her so we told her she could put on her sneakers with her snow pants. She escalated a bit more I had a feeling we weren't going to figure out what she actually wanted. My BHP and I knew we had a little time but we needed to get going.
Things kept escalating from that, we tried waiting, finding a reinforcement, distraction, punishment (like time-outs but they didn't work like usual). We got her shoes on, jacket on, and even her hat, but when it came to her gloves she kept grabbing them and acting inappropriately towards the BHP (she usually takes things out on her when she is upset). I tried to get her to be nice (which is a requirement for me NOT my BHP) and take the gloves without growling or she didn't have gloves. Needless to say the gloves weren't coming with us. She then escalated again.
I'm sure by now you are asking why we didn't just give up and stay home at that point? The one big rule with Eden (and most children with ASD) is, if she thinks that behaviors help her avoid uncomfortable situations, she will continue to do them and even escalate further just to always get what she wants. I know it sounds like a great deal of planning on her part but it's really simple. Say she doesn't want to transition to the car and she starts throwing things. If we then say, "Fine, we aren't going then." She then has learned if she doesn't want to go to the car all she needs to do is throw something. Most transitions are like this if you know any kid on the Autism Spectrum they all have some issue with transitions, if it's the anxiety to go to a new place or just the fact that they don't want to leave whatever they are currently doing or even something else all together. They are down right a pain in the butt.
Once we told her no gloves, because she couldn't just take them without having a behavior. She started to escalate again. The BHP and I we working on getting her out the door, I was taking the lead on physically assisting her. When we do this we give her the choice to go on her own or we can "help" her and did this a couple of times. Yeah, she wasn't going to go on her own. I picked her up under her arms (just in case she tries to bite me this is the safest place to "assist" her), and of course she started going into a "death roll" kind of thing, like crocodiles to do kill their pray. She twisted me just the right way and then somehow my hip started to burn and a pain came from my back that almost made me faint.
This is just what I needed, I had to put Eden down and tell my BHP that I couldn't lift her again. Yup, I'm still feeling it tonight. I've taken more medication tonight than I have in the last two months and can still barely move. We finally got her into the car and got her through a super quick run to the store. By the time we got home she was fine again.
Then it was off to OT, we talked at length about her IEP and Eden was as happy as a clam bouncing on the trampoline and then crashing into the mats. Her OT could see that Eden was having some trouble with her body and being able to sit. She did very well during her fine motor work and then was given a small "break" to jump some more. The next time she had more difficulty transitioning to the table, she ended up escalating and really getting aggressive.
We had to end the session early, Eden was crying while she left. She finally calmed down on the car ride home and I've been in pain all evening. I just wish just sometimes, the bad times were a little more boring. No, having to think on my feet about the next step to avoid her escalating and the feeling of failure when I don't succeed. Or to just let her be a brat and get her way all of the time. Would it be easier for us? I don't know, I do know that I hope this passes just as quickly as the other difficult times, but if it doesn't expect a lot more posts.
Oh and on a side note did anyone notice the New moon is tomorrow? Haha And she has a dentist appointment, this should be fun.
No comments:
Post a Comment