Thursday, April 26, 2012

In her own good time

So many people ask me how Maya is doing.  I really love that people are concerned and ask about her, although often I am never sure how to respond.  I find myself either giving a real perfunctory cookie cutter answer, she's doing great and yes, she likes school or going totally to the other extreme and giving way too much information, as I did the other day at work while I talked a colleague's ear off for 25 minutes.

I guess that colleague will look for another table in the lunch room when she sees me sitting down.

Oh well.

And I must say that while we have our ups and downs and good moments and not so good moments, the last year Maya has really matured.  She has calmed way down and the highs and lows are not as high and low as they used to be.  The bad moments are not quite as bad as they once were although I still want to cut a bitch when I get the "isn't she too old to act that way stare.  Her therapy has helped immensely and I think her school has helped a lot too.  Maya has been at her school for just over a year now and the stability of being in a familiar environment has really done a lot for her.

Yes, Maya's autism is still a challenge and if you measure it day by day, incident by incident it still has a huge impact on her life and her development.  But if you take a step back and look at the timespan of several months, I can see that she has moved forward.  She is able to swing with unpredictability much more, she doesn't like it any more than before, there is coaxing and encouragement involved, but it doesn't break her down anymore, doesn't force her back into her own little world.  She tries to work it out, some times more successfully than at other times but there are a lot less incidents.  We talk through things much easier than before.

Unless it has to do with spiders.

Then all bets are off.

Yesterday morning Maya had a checkup at the dentist.  Maya is terrified about any thing reeking of medical, even more so since she had her last round of vaccines.  We've had a couple doctor and dentist appointments and while Maya hasn't had a full blown meltdown since the vaccines, just the memory of it in a doctor's office makes her freeze and start nodding her head furiously.  I didn't have high hopes for the dentist and Maya was crabby and clingy when I woke her up (not her way at all unless there is a white coat involved).  As usual I told her exactly what would happen so that she would have no surprises.  When we were walking into the building, she offered this little nugget:

Mommy, I am 8 years old now, that's not little, so I am just not going to be scared of the dentist anymore.  
OK, who are you and what have you done with my daughter?

And she really was a trooper.  Scared and wooden like, but still she got in the chair by herself and as long as I held her hand, she did everything the dentist asked.  Open, bite down, spit.   She didn't look the dentist in the eye once, but hell, it's a dentist, they probably get no eye contact.

And I've noticed other things too.

Maya doesn't have homework from school and often I feel like I am in a bit of a black hole about what she knows academically and what she doesn't.  They send school work home periodically and whenever I am at school they gladly let me look at all her work but because she doesn't have homework and doesn't work from too many books (most of her work are sheets that they print off their lesson server at school), it's hard for me to put in context what she is learning and what the learning curve is.  And to be honest, everything I've seen is stuff that would have easily been covered in kindergarten or first grade, maybe even preschool.

But her writing is getting better.  If I look at her math papers from a year ago, those 1's, 7's and 2's look like they were written with someone with Parkinson's and all the letter practicing lines were always left blank.  Now her pencil lines are solid, she's put a little muscle behind the pencil and that's good.  She's still enormously nervous about letters and doesn't do much writing of letters, but at school she does do it on the computer.  And she does it like crazy on the iPad.

Speaking of the iPad, I sometimes feel that the iPad is a little like her homework.  When we first got it, I tried to load it with all kinds of learning games, but Maya would have none of it, always going to Angry Birds, Talking Tom and her oodles of "maker"games (cupcake maker, pizza maker, breakfast maker).  We decided not to push her, to just let her have her fun.  Slowly though I could see that she was developing an interest in the learning games.  Over the last two months after dinner, in our bed or in her own, she would lay with the iPad and practice spelling and simple addition and subtraction.  Yes, she is still counting the number of oranges or stars or hearts and doesn't get the symbols yet and I always have to remind her when it is subtraction and not addition as she kind of thinks everything is addition.  And she really is doing great with the spelling games.  Although every time I ask her what a word is, she clams up and says I don't want to play with the iPad anymore.  


Now every evening we sit together and play memory game and she kicks my butt every time and then we play a letter game and a counting game.  And even though I have to help her with it, she's doing it.

And she is getting better at it.

On Monday when Maya came home from school, like every day I asked her how school was and she gives me her usual pre-recorded answer --fun.  I ask her about gym class or if she worked on math or language and sometimes she zips me a fast yes but most days she says, I don't want to talk about school anymore mommy.  And she did the same on Monday, but after I pumped her full of yogurt to get her blood sugar up, I asked her if she did math today (she has math every day) and she told me that she had a test in math.

First time I ever heard her say she had a test.

And to be honest, at her last educational goals meeting her teachers told us that they hadn't been able to test her, because she won't sit and focus on a test.  She will work for a few minutes and then go get crayons or run around, so I was very curious to hear her say that she took a test.  I asked her if she finished it and she said yes.

Now it is altogether possible that she didn't finish the test, but Maya looked me straight in the eyes when she told me she did it and her usual, when she is not sure or when she is not telling me the truth is to talk really softly and look off to the side.  Maya told me today that tomorrow she will get her test back and bring it home.

I have hopes that she might have finished one.

I've resisted the urge all week to call the school and verify her story.  Yes, I want her to have finished that test, yes, I want her to have done well on it.  Actually, scratch that, I don't care if she did well on it or not.

It's in the doing.

And I am not short sighted enough to think that finishing one test is the answer to everything.  Maya still has problems, serious problems.  I am not one of those parents who thinks a good couple of weeks means that the problem is solved.  I am also not one that a few bad things means that everything is crappy.

We are where we are.  I am just going to keep on keeping on.

I don't know what I am going to find tomorrow, but no matter what it is, Maya is, in her own time, in her own way moving forward.  That I've seen with my own eyes.

And that's enough.  

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