It's amazing how tired going to doctors and sitting at hospitals make you. I didn't even have the procedure, and I've been exhausted for the past 2 days. All of the prep work and planning and lack of sleep and worrying. After a big day at a doctor with Vicki, it kind of feels to me like that exhaustion you get after opening presents on Christmas morning, or after a big event you were preparing for. The adrenaline seeps out of your body and you are left feeling rather lethargic and just done. That's me today. I can't imagine how Vicki feels. Well, I kind of can, because she stayed home from school today {she looked absolutely depleted last night and when I asked her about school today, she very adamantly proclaimed, "No school on Friday. No school. Vicki rest and relax" - which is what she says when she doesn't want to get out of bed. So that's what she did today. She rested and relaxed. She still looks exhausted, but hopefully, we will have a nice calm weekend at home. Going to color Easter eggs tomorrow {thinking about trying a new way - with dye and rice this year - we shall see how that goes}. I have the old stand by PAAS egg coloring kit just in case.
We should get the results of all of the biopsies the GI took in about a week, to a week and a half. And then, crossing my fingers, hope we find something that we can treat and help Vicki feel better. I never want to hope for something bad. But I also hate putting her through all kinds of tests and procedures and have the end game be - well, everything looks normal, who knows what's going on. Come back in 6 months and we'll see how she's doing.
You know how I talked the other day about how difficult it is to have someone else get Vicki up and ready in the morning? In all fairness, there really has been a chance to try something/someone different for quite a while now. And, although this may sound bad because I know I should try to decrease some of the load on me, all the while trying to help Vicki gain more independence and get used to different things... it's also kind of 'easy' when we have a system that works. Sometimes the OCD and the sameness of some routines actually just lessens the burden of difficult behaviors and enables us to get Vicki to do some things that have been a struggle... such as get on the bus, go to school, etc... It's all about perspective. Anyway, I've had the opportunity twice in the last 2 weeks to have help in the morning, when Vicki didn't have to go to school. So, we tried it again. We took a portion of her morning routine and switched out people. And, although it was really hard the first time, the second time it went a bit better even though it took a long time. And I am grateful. You know? To be able to step away for a few minutes. And I know it's good for Vicki. But then, today, it's as if Vicki has already tried to create a new routine. And although some of that is good, it's also very, very bad. Because for the most part, I can't get help at the time I would need to get Vicki up in the mornings. And things get slower, and she reacts differently to different people. And, she establishes routines so quickly. So, what was working for me with Vicki before, now has been 'messed with' and it's no longer working as well. It's all perspective. What needs to happen when and how difficult it is going to be. So, when Vicki starts not being able to move through a specific step in her morning routine because she just started a new routine that includes that person in that environment.... you can see where the difficulty lies. If that person can't come at that time, which is usually the case, then we can no longer move through the morning routine in a timely fashion, and then there are delays with the bus... and then she starts refusing other things.... It's really hard to know what to do.
I'll give you another example. As I've said before, Vicki takes a special needs bus to a private day school about 45 minutes away. She has her normal bus driver and normal aide. She is used to the routine. She is used to them in that environment. From August until March, Vicki had to use a wheelchair because of her broken leg. So she used the bus lift with her wheelchair. Before she broke her leg, we had struggled with getting off the bus, but we had found something that was working... I would hand up my phone to Vicki's aide with a minute timer on it. When it would go off, she would get up. It took us a long time to find the 'thing' that worked with Vicki. And then she broke her leg. And she used the wheelchair lift. This school year we had a new aide with the bus driver. And she had only worked with Vicki using the lift. When Vicki got the last of her casts/boots/air casts off, I had posted on my fb page, how Vicki just stopped cold turkey and started walking again, even though we had been trying to fade the wheelchair for 2 months prior to that.
The first day she walked on the bus again I was so nervous thinking we would have to start with the timer to get off the bus again. But, amazingly, we didn't. Vicki had established a new routine with her aide, that didn't include the timer delay we had from the year before. It's all Vicki's comfort level, the environment, the people, and the really hard part... it could be something so insignificant that that person does or says that flips the switch for Vicki that allows her to complete the transition. And after that first day walking again, I held my breathe. And that whole week she transitioned beautifully to and from the bus. And then the next week, and the next. And I let out a sigh of relief. Fast forward to this week, it was spring break week for our local school, but not Vicki's. The bus driver and aide that Vicki was used to had the week off. And it was a different bus driver and aide on Monday. And I held my breath again. In the back of my head, I was preparing. She got on the bus ok, but I could tell she was thrown for a loop and she seemed very anxious and uncomfortable. Then the difficult transition off the bus at the end of the day... I hadn't had to use the timer since before she broke her leg with a different aide. But I could tell, there was hesitation. And I can just tell with Vicki- sometimes it's just her body language. But I can tell when she is hunkered down and isn't going to move. This was one of those times. So, even though I didn't want to, I brought back the timer. It didn't work. I tried some of the other tactics/plans we have in our little toolbox of behavior modifications. Nope. Nothing. After 15 minutes, she finally got off the bus. Not as long as it could have been, definitely, but not good. And I spoke with her teachers and her behavioral therapists, and we discussed more strategies in case it happened again. And it did. On Tuesday. And the strategies didn't work. But again she got up from her seat and got off in under 15 minutes. On her own terms. And oh, how we wish we knew what that term was. She hasn't been back to school since because of the medical issues... and then next Monday I'm not sure what team will be on her bus. Were the behaviors of those 2 days enough to create a new routine that will be hard to break? Or will the hesitation magically go away? I know 15 minutes doesn't sound like a lot of time. NBD right? It is though. It's a very big deal for Vicki. Because the bus can't stay forever. And 15 minutes can easily turn into 45 minutes. Then an hour, or 2. I know I've mentioned before we've waited for 8 hours before for a transition {not with the bus, but with our van}. It's stressful. Definitely. And can become very quickly something that could end her successful transitions on the school bus. It's like dominos falling. One thing changes, that sets in motion another, and another, and before you know it, you look back and think, how can we put it back together again?
I'm going to head out now before we lose power if another storm comes through. Sorry, my writing is so sporadic and all over the place. I suppose my mind is like a set of dominos too. Once you knock the first one down, I just keep going... :) Much love to you all. xoxo
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