Cooking with Maggie

We’ve talked a lot about hand over hand exercises on this blog and have assumed that most people reading this go “oh yeah, I know what that means, I do it all the time.”  But I realize I wouldn’t have prior to needing a word to describe what it is we’re doing.

You see, we continue to watch Maggie’s hand and arm use change.  Her right hand is forcefully pulling her thumb through her fist constantly.  She can’t control it nor stop it and without constant bracing at this point she gives herself callouses and blisters.

Her left hand taps her chest, stretches outward, then sometimes taps her chin.  Also, more or less constantly.  At least, that’s what it is now.

I watched some old videos recently – always a hard thing to do since I always recognize how far she’s come, both positively and negatively.   In this case I noticed how much more her arms are moving now.  It’s almost impossible for her to control now.  Pressure, compression, bracing, heavy work, are all things we do, but where she used to be willing to hold herself up with her arms for a minute at a time, that amount of time has decreased pretty significantly.  I’m lucky if she’s willing to hold herself up for 10 seconds now, and even that requires a lot of assistance.

As a result of all of her troubles with her hands and arms, everything we do has to be hand over hand.  That means we have to hold her hands and manipulate them to do the task at hand.  While she can still grab a pre-loaded fork we’ve even needed to help her much more, of late, with that, lest she drop the fork and food, or miss her mouth entirely.  She wouldn’t independently decide to pick up that play dough, or bang on that drum, or pick up a puzzle piece without us holding her hands and helping her to do it.

Helping her do it is an important distinction.  I mentioned in this video that I was making her do it and you can see, she’s not happy about that phrasing.  In her mind, and ours as well, she’s doing it, we’re just helping to guide her hands.

Sometimes she tolerates it and is even grateful for the help – notably when she does arts and crafts, or swings a baseball bat.  Sometimes she’s furious about it.

Regardless of how she feels about it – it’s necessary to get her to do typical age appropriate tasks.  And doing those things is important because it creates muscle memory, builds experiences, and it’s obvious that she appreciates being able to do things.  But most importantly, when she’s cured and we ask her to do something she’ll say “oh yeah, I know what that means, I do it all the time”.

 

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