Sunday, September 4, 2011

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.  :)


Anonymous said...

Your writing, as always, is beautiful and poignant. Your outlook on things is so raw, honest and so very positive, that you are more than entitled to moments of concern, more than any of the rest of us crazy moms out here. I will be hoping for a wonderful first day of preschool for Maya, and a peaceful few hours for her Mom and Dad as you send her off! :) P.S. I'm sure she will do great, she's had you and her dad behind her all the way!

Krystle said...

You are super mom for writing this up for Maya.

I'm sure you might have considered something like this already/used it;but if not, it *might* help in the event they can't figure out what she wants. Our ST told us to take pictures of 'normal' things she might want/need. Ie. Picture of sippy cup, etc. She wanted to put them in a photo album but I was going to laminate them & punch a hole in the corner & put them on a key ring. So she could flip through.

Sorry if it's something you already use/have already tried. Just trying to help.

Cheryl (in Buffalo) said...

I do something like this for my daughter as well...for school/daycare/etc...and I truly believe it really helps. I think people do the best they can to understand her and protect her as best they can, and my extra information can only help...well, that and maybe make them think I am a bit off the deep end....but.....

mamacarlson09 said...

Wow, you wrote my thoughts about my son down exactly. He has his own version of sign language and has the same word approximations for many different things. He just turned 2 and I'm worried about what will happen when he enters preschool. I have no advice, but just wanted to let you know that you aren't alone. And thanks for blogging about your fears, because now I feel less alone.

Jo-Anne said...

I just think you're amazing! Such a wonderful Mama! I totally agree with Jaclin, she'll do amazing because she's has you guys behind her all this way. =)

Cortney said...

I wish the parents of my students were more like you. Maybe as the years have gone on they've "given up" a little, but I would LOVE IT if a parent sent me a video showing the signs that their chill can do. You wouldn't believe the number of kids that get dropped off on their first day here without even a note saying what they like/dislike, how they communicate, and concerns to watch for. I wish more people were like you.