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.
Tuesday, January 14, 2014
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4 comments:
Is life all about balance? I know with my 17yo daughter with moderate CP, we sometimes have to do one thing that hurts another. And keeping all of the balls in the air at the same time just isn't possible. Go with your instincts. Trust yourself. You'll know.
I have never heard on someone with Elena's level of spasticity using a stander. I think more natural movements and stretches might be better than the stander but I don't know for sure. In regards to bath time and getting up for school,let her play and relax in her bath or maybe cut her bath short so she can play after. For school maybe get Elena up earlier in the morning. I know she probably would not like that but I have SDCP and started dressing myself for school at 9 years old. I always get up for school earlier or get ready to leave, go to an activity etc early if it means I can slow down and relax. If Elena has issues writing for Language Arts homework etc maybe allow her to type it on a computer somehow. My handwriting was what slowed me down with my homework. I don't know if her hands are affected. If her eyes are affected that might be why she goes slow as well.
I can relate to your situation and feeling stuck between a rock and a hard place, for sure. You seem to be doing so many things for her and the rest of your family, it will just wear you out. I think Elena's benefiting and excelling at so much, that just goes to show how important your balancing act is. I commend you for your strength and continued dedication!
I can also relate to all of this. With Emma, it seems her social life gets cut a bit short, and that is an important area. I am not sure there is ever a perfect balance with all of this, but you are a wonderful mother. Your girls are happy, with beautiful lives, and lots of opportunities. That's what it is all about. It will all work out in the end. That is what I tell myself daily, anyway!
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