Quick Recap: Breakthrough (sort of), End of 2018

Hi everyone,

First of all, thank you all for your comments--truly, you are extraordinarily helpful at times when I feel like no one understands our situation. I feel like the biggest issue I have is trying to combat/learn our way out of issues at home when I do not have permission to write about them in detail, or at all. (For any new readers, Elena and Vivian have to approve anything I write on this blog about them).

So I'll do my best.

First, the breakthrough.

We have been working on a lot of self-sufficiency/executive function tasks/sequencing/attitude things for YEARS with our educational and psychology team. The reality is, we really haven't made much progress. We are considering a psychiatrist; not immediately, but the possibility is looming of getting help that way. (I understand that there isn't a lot of detail behind this).

Essentially a lot of this boils down to Elena being able to do things, but just doesn't. (Basic things. That she can do. I swear, taking all your comments into account, I am not asking too much with my demands.)

So, we are trying to find ways for her to practice skills without increasing her isolation (ideally, if she isn't ready, we don't just leave her at home, for instance). This has been a near constant struggle.

What ended up working was using her upcoming Chorus competition field trip (to Nashville) as bait.

I simply told her I wasn't going (as chaperone, or as her helper).

Her mouth dropped.

And then I told her if she wanted to go, I would not let her delay the group; she would have to find a way to prepare herself, using methods we have been trying to teach her, and she would have to demonstrate she was capable of this by a certain date or she would not be able to go.

So, this worked for a few weeks (a record!) and then sunk back, but as she realizes I am dead serious, I think things are getting better.

End of 2018

December was a whirlwind of end-of-school performances, medical appointments, and lots of time dealing with health insurance. My in-laws came down for Christmas; we always love having them, and they were especially helpful this year! My family joined us the day after Christmas and it was wonderful having everyone here. Dad is doing okay, Jason was our chef and dinner was lovely, and we even managed to get a family picture!

I don't know about you all, but my 2018 was a few amazing highs peppered among a lot of lows. Among the high points was my trip to Africa, spending time with friends and family in a few select cities (DC, NY), and our trip to the beach. The lows are more of the struggles vaguely described above, of course, my Dad's diagnosis, Jason's traveling for work, and navigating Vivian's epilepsy--which took about 3/4 of this year. I've been trying to take care of myself and our family during this time by stressing healthy eating, regular exercise, and a regular sleep regimen.

I know that the New Year is just another day, but the idea of starting fresh is appealing. Here are a few lessons I've learned this year, in no particular order:

1. Keep the best notes possible regarding health expenses. You never know when someone will be hurt or sick, and it can save a ton of time and stress if this is organized. I thought I was good before, when I blew out my knee in 2015--but Viv's condition is pretty complex. My plan needs some tweaks, including better digital organization, but I'll get there.

2. Everyone says it, but it's true: take time for yourself. I enrolled myself in an adult beginner tap dance class; I'm not good at it, and I can't make it every week, but I try, even if it's been a terrible night at home. I'll even get a sitter. The physical and mental challenge of tap really gets me out of my negative headspace, I can't possibly focus on problem solving home challenges AND getting the dance combo right.

3. Make an exercise goal. I joined an instagram challenge (something I've never done before) and while it wasn't super difficult, it made me structure in exercise where I wouldn't have otherwise. Now I make monthly short-term goals, and I've been doing well on them for the past three months. My biggest achievement (I think) is I've biked 50 miles/week (on my decade-old fluid trainer in the cold garage, mostly) for the past three months. I have bigger fitness goals, but it all depends if I can jog again, which I'll be working on in 2019.

4. Get fresh air every day. I know when things are negative, or cold and grey outside, sometimes cave days are good--but getting out, even if for a short while, makes them better (I think).