The Maya Handbook

I'm taking a break from a project I've been working on in my free (read: non-Maya) time today: a Maya Handbook.  A guide for her teachers/therapists to all-things-Maya.  It seemed like a great idea---since she can't talk, I'll talk for her in a pre-first-day-email. 


Frankly, it's turned out to be kind of exhausting.

I started with some simple stuff, like her general personality.  Summary: 1. She's delightful but stubborn.  2. She sometimes acts like she can't do things that she can (so don't let her trick you) 3.  She listens to and understands way more than you will initially be able to see, and 4. She'll do anything for a laugh (fake sneezing and fake laughing are on the rise).

That wasn't too hard.  It's kind of fun to tell people about my kid :)

Then I moved on to some physical stuff, such as: 1. She moves too fast and doesn't pay attention to where her feet are, so she will fall, suddenly and hard. 2. If she starts to lose her balance (even in the slightest), her whole body will tense up and, again, she will fall.  If no one is in arm's length, she will reach for the closest child or object and possibly pull them down as well. 3. I talked about different PT techniques, goals, etc we've been working on and expressed my excitement to see what tips/techniques they will have.

Well, that wasn't as fun.  I would rather just tell them "Do you see her WALKING?!?!  Isn't it AMAZING?!?"   Instead, I'm trying to think about things they should know to prevent possible accidents . . . but that just forces me to imagine accidents.  And here I am again, pointing out the things that she can't do yet (stairs), and the things that make her different (suddenly locking up) . . . and that just makes me dwell (however briefly) on her can'ts and differences.  (sigh)

Then I try to explain her communication method, which is a combination of:

• signs (modified by her limited dexterity, these aren't ASL, but MSL---Maya Sign Language---Maya, Dave & I are the only ones fluent---although I understand more than Dave does, and sometimes even I am lost)
• sounds (so far on my list, "Mmm" means 8 different things---from more to cow, depending on the context)
• gestures (which are different from signs, such as pointing or waving arms)
• whines (which are, sadly, on the increase as frustration builds and she can't make herself heard).

And now I'm just agnst-ridden.  


The same fear that I've had, since she turned 2 and I started to imagine preschool.



Will they understand her?  


In my sad, dark place (where I don't sit for long) I have visions of her signing that she is thirsty, and no one understands-----or worse, they pull her hands down and tell her to stop (as her sign for water more or less looks like she's hitting herself in the face). 

It makes me tear up even to write that----my little girl begging for water in a foreign language and having the only-English-speaking adults saying "stop that".

And then I snap myself out of the drama and I'm glad that I'm writing this guide (and tomorrow I'm going to film a few video clips of the signs, make a MSL video dictionary so that the teacher will have a heads up).  They'll have a heads up.  And these are really good teachers at a  really good school, they've dealt with nonverbal preschoolers for a million years and this is probably old hat.   Really, I have to be glad that I won't be there to translate----the frustration of not being heard should prompt more concerted efforts on Maya's part to clearly communicate. 

But I worry for her.

I don't have a lot of "I wish I was just a mom of a typical kid" moments, but tonight . . .well, I had one of them.  I wish I wasn't writing a translation guide.  I wish she could say "I'm thirsty" . . . I wish she could walk around without the random seizing up and falling down.  I wish that my first-day-of-school jitters weren't compounded with the extra worries that come with our unique situation.

I'm not dwelling in it, because I'm also grateful---grateful that I get to write about her unique way of walking (because she's WALKING-and almost RUNNING) and grateful that I got to write about the sounds she makes (because she's trying) and the things she understands (like letters!  my smart girl). 

So I'm done for the day, and sleep will recalibrate my attitude.  Tomorrow: back at it.  And you know that Maya (the ham) will have a fabulous time making a video MSL dictionary.  :)