Yesterday, I think I was talking about OCD. Today I thought I would talk about Vicki and some of the ways we struggle on a daily basis with whatever you want to call it - autism, anxiety, OCD, hormonal teenage girl. Whatever it is, it wraps itself so tight around Vicki, that some days it's hard to break through. And the breath holding that I do in the spring.... it's kind of the same thing I do every morning too. Because you never know with Vicki. You never know what little thing it will be, or at what spot in her routine she will get hung up, but the fear, it's always there bubbling under the surface. I try really hard to stay cool, to not react to things. I firmly believe that Vicki can read people better than most people can. I swear she can smell the fear. And of course, that's not good at all.
One of the things that scare me the most is that I really don't know if Vicki would get up and out of bed in the morning if it wasn't for me. Think about that for a second. Sure when your kiddos are babies and toddlers, all you want for them is to sleep a little more, stay in bed on a Saturday until at least the sun comes up. And then as your kiddos hit the teen years, you wonder if they will get up before noon on a Saturday. The pendulum swings from one extreme to the other. And yes, there are times that you have to rip off their covers, bust open the curtains and belt out in your best Joey from Friends voice:
Morning's here. The morning is here. Sunshine is here. The sky is clear. The morning's here.
What? You don't do that too? Mark is the best at it. The kids love it, I swear. Ha!! Sorry, I digressed. But what if your kids never got out of bed? At some point, they have to be hungry, or have to go to the bathroom, or just get bored sleeping and being alone, don't they?
Anyway, things are difficult with Vicki's sleep. In summary, she doesn't sleep much. We've been working on that, but to no avail so far. We had a sleep study which just proved to the technicians that we were telling the truth, she doesn't sleep, usually doesn't hit REM sleep, and if she does fall asleep, it's not till about 4 or 5 in the morning. She is up most of the night, sometimes she scripts and talks to herself about her schedule the next day, or what she wants to happen. Other times she gets up and plays a board game in the middle of the night, without lights on, sitting on the floor. Still, other times she just stares and relaxes in the covers. She typically keeps the covers over her head so it's really hard to tell when and if she falls asleep. We've tried lots of different things over the years and saw a lot of different doctors. She's done melatonin, we've tried and failed other sleep medications.. We've made changes to her room, her lighting, the sounds, removed all things she could look at or play with, brought them back. Stayed in her room with her, sat outside her room and would go in when we would hear something. You name most things, we've tried them. They want another sleep study, and we are gearing up for another new sleep medicine that her psychiatrist thinks may be THE one for her. But we have to be careful with meds, and the side effects, and how much interactions they have with her other meds, and how much they lower her seizure threshold. It's a balancing act. And it always scares me when we try something new, because I never know how it makes her feel. Or if she is experiencing scary side effects that we don't know. And every morning when I go in her room to get her up, I have to pull the covers off her and the bed. And usually, she is not all bleary-eyed, like you are when you have been sleeping hard. Usually, she looks awake. Very awake. But she won't get out of bed to get up and start the day. Yes, there are times few and far between that she has that redness and sheet wrinkles on her skin, and her eyes look tired, like she had been sleeping hard, but it's not often. And sometimes she wakes up and says she has to go to the bathroom. But then she wants to get back in the covers and "rest and relax". Other times she just has accidents in her bed and never asks to get up.
For the most part, Vicki gets up out of bed, only when I go in and pull the covers off her and the bed, and hand her the visual schedule for the day. If I don't take that off of her in a minute, then she still just lays in bed. Once I take the schedule from her, she gets up, always on the right side of the bed, grabs her glasses, Layse Black Cat and Fox, and goes into the bathroom. We've tried over the years to do other things, but this is what works, at least for right now. If I just go in and tell her it's time to get up, nothing happens. If I go in and rip the covers off and don't give her the visual schedule, nothing happens. If I just go in and sit in her room, nothing happens. If I let her "sleep in" and don't get her up, nothing happens. Some days when I know she was up really late, or I can just tell she needs more time to snuggle under the covers, or whatever, I wait and see if she will get up on her own. She never does. We've had it be 1 o'clock in the afternoon before and she will still be in bed if I don't go in, do her routine, and get her up. Some mornings on the weekend, I run out to the store or something, and the thing that weighs heavy on my heart is that I know just how much I am needed. Like, Vicki depends on that routine so much, that if I didn't get back home.... would she ever actually get up out of bed? And that scares me tremendously.
I love being needed and wanted. I love being a mom. I love being nurturing and loving, and I love doing things for my husband and kids that make them happy. But the sheer weight of being needed for Vicki to get up and start her day, it's a lot. Yes, we've tried having Mark help her, or the other kids, or aides that work with Vicki, but it doesn't really work. Can I try harder? Yes, I'm sure I could. I know, what if something happens? Or, hey mom, you need a break, let someone else do it. I know. But it's a lot easier to offer the advice, and it's even easy knowing it's the right advice than it is actually doing it. If you wait her out long enough, she's bound to get up, right? Well, we've lived through "waiting it out". We've done "waiting it out" for years. And it's exhausting. We do it for so many aspects of her life, and our life. Until you have to "wait it out" you don't really get the emotional implications of it. Yes, we've waited things out. Sometimes for up to 8 hours. But sometimes certain things take precedent. What do we need Vicki to do that day? The whole pick your battles... And does getting to a doctor's appointment, or getting to school take precedent? Sometimes. Because the moment you try to wait it out, for one thing, something else happens and then a routine is established that you never meant to happen and you can't stop it. And then you are stuck with something new that you have to figure out how to fix. And sometimes, just as a caregiver, I need a break. Yes, but sometimes that break takes the form of other things. Wanting not to start the day with a battle that you will have to wait out for hours. Wanting just to have some coffee with my husband and watch a home improvement show before we attempt to try something new. Or, just wanting the day to just happen, so you let the routines that run your life run their course because it's just easier sometimes. I'm sure some of you that are reading this think, 'don't complain about something being hard if you aren't willing to try to change it'. And while that's true, and I do know that things can't be the same forever, I am currently working on other battles that are raging. That doesn't mean that I don't think this is important, clearly, it is. And we've worked on this before, but right now I guess I am just taking the "easy way out" and focusing on other stuff because I can only handle so many things at one time. And currently, this isn't ideal, but it's working {for the most part}. And she is getting to school right now. So, there's that. And I will take that as a current win.
I guess I spent so much time talking about Vicki getting out of bed in the morning that I didn't really get into the rest of the day... Sorry!! I will just leave you with this... so I get her out of bed. That's only the first of the many times I hold my breath each morning. Another big breath-holding moment is when she is getting out of the shower. Sorry, I have to run right now, but I will talk about that next time... Love you all. xoxo
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