Tuesday, January 1, 2019

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).


Adelaide Dupont said...


hope you enjoy your beginner tap and the exercise and the fresh air.

Good luck with the health expenses too.

Vilissa Thompson has some good ideas with planners in that regard.

The past is your lesson. The present your gift. The future your motivation

Anonymous said...

I'm glad Elena had a breakthrough! I have CP. What my parents did starting age 11 is to just drive me to activities and drop me off so long as I was safe. They would say matter of factly "I'm not available. Do it yourself". Not harshly. I had no "chaperone" except friends or teachers that happened to be there. I was left to my own devices in terms of figuring out timing, staying with a group etc. If I messed it up I usually felt embarrassed enough about it that I found a way to fix it or found another new activity I could do on my own. Are you talking about basic dressing skills at home? If you are talking basic home skills like brushing teeth, putting on sunscreen then yeah she should be expected to do those. Or are you talking functioning outside the home with her friends? I was left to my own devices at sleep overs except when I asked the friend I was staying with for help. If Elena is still wearing AFOs as I assume she does that takes a huge chuck of time to put them on and take them off and you need to spread her activities out. i.e in college I left a gap in between my classes of a half hour so I could actually walk from one class to another. If Elena at least attempts independence but is not fast enough to complete it, I think Elena's schedule is WAY overloaded based on your posts if she can't get out of the house on time and you need to drop some non essential stuff from her schedule immediately! I would be exhausted if I were Elena too. I don't think she needs a mental health person involved here. She just needs time to be left to her own devices and eased into independence gradually instead of making the "independence" a project or lesson. Example; when I learned to do certain things my parents gave suggestions or a small lesson then stepped away and monitored me from afar without saying anything whatsoever and I was able to just work with my own spastic body to get in right. If there's too much detailed information in a lesson I block it out. A lot of times I just forget things too so I just need little prompts. My brain doesn't always tell me "do the dishes". Its not to be mean to my parents or lazy. If Elena is NOT at least attempting to do things herself than she may simply not even realize those activities are supposed to be done independently by a person with CP(she may need to see a person with CP do it to get the message), or just feels she has to no time whatsoever and is way too tired/in pain or is too embarrassed to even try it. Based on your description of her reaction to your bait I think she just has you do things to save her time and energy so she needs to work on stamina and lighten her schedule more than anything else. I'm glad you are dealing with this now because I once knew a girl with CP who was not taught to be independent until age 20 and had panic attacks over it. :( Glad your dad is doing a bit better. :)

Margot Cole said...

This is Margot. Gregg Mozgala's student. If you need help with Elena's independence you can always contact me here http://cripvideoproductions.com/contact.php and describe in detail what Elena has trouble with and I can tell you via email what might be CP related or not and how Elena can work around the issues if you like?

Does Elena have an Instagram of her own now? I thought I saw her name when I scrolled through instagram earlier. I can talk to Elena directly about Independence if she wants guidance from me as a person with CP directly? Ask Elena and I'll be happy to talk with her. Tell me if you have trouble contacting me.

My best to you and your family.