Well, I've learned a lot in the last two weeks or so. With school back in session, and me home now, I have a more complete picture of how Elena handles her day.
Our current situation operates on a fulcrum, and I see it everyday, in every thing, regarding Elena. It's hard to explain, b/c it encompasses....everything.
As she spends mornings in her stander, her legs get a stretch. But her sitting posture suffers. In her stander, she can't practice keeping her hands out of her food like she does when she sits at the table.
We practice math after school. She is doing great! But that extra 45 minutes of math means that there is no free time because it's bath night, it takes her an hour to do her homework, and bedtime waits for no one. She needs her rest.
She wants to do things herself. We want that too. But we limit what she can do in the morning (we dress her, but she brushes her teeth, etc.) or else she can't get to the bus on time.
Time. Independence. Strength. Spasticity. Academics. Tightness. Play. Rest.
When improving one results negatively in another, what do you do?
And as her younger sister handles more than one of the above (with ease), it just exacerbates the situation. We're between a rock and a hard place. All the time.
The good news is, I really see this balancing act now. I'm still working out some options (possible homework accommodations, looking for time saving ideas around the house, dropping some after school engagements, giving Elena more choice time) but it is a constant struggle. The other piece of good news is Elena and I are communicating about it. She is better at understanding why these things are important (therapy, homework, stretching, practice) and she knows that I am trying to give her things she needs--but also things that she wants--like playtime, creative time, break time, friend time. I know those things are important too.