Wednesday, December 28, 2011

The Not Gettings and The Givens

Last night Maya asked me if she was going to get a Hanukkah present.  I asked her if she remembered what Leo and I told her the night before, that last night was the last night of Hanukkah which meant that Hanukkah was over and we would not light the Menorah again until next year when it was again Hanukkah which meant also that she would not get anymore Hanukkah presents.

When you have a kid on the autism spectrum, it is important to prepare them for these things.

Maya answered that yes, she remembered it was the last night of Hanukkah and then she asked again, would she get a Hanukkah present?  And I again gently explained to her that Hanukkah lasts for 8 nights and when it is over, we have to wait again for next year in order for it to be Hanukkah again.

"But mommy, I am a good girl, don't I get a Hanukkah present?"


Now I could just write the whole incident off that my daughter is materialistic and is using Hanukkah in order to finagle gifts out of me.  I mean, seriously, what 8 year old doesn't want to have more gifts?  And I am sure there is a little bit of that in there.

But this is a perfect example of how difficult it can be for an autistic child to get a concept like this.

When I was a kid, I got it immediately.  It was a holiday, we got presents for 8 nights, actually we usually only got presents a on couple nights. My parents preferred the big bang over evolution when it came to Hanukkah, give all the presents on one night, and another night we got presents at our grandparents' house and other nights we got whatever presents trickled in from relatives which consisted of loads of $5 bills (don't snark, $5 was a cool amount of money back then).  But I can remember at the age of 5 knowing it lasted for 8 nights and when the menorah was full, the jig was up.

With Maya though, it is not always so clear, even if you prepare her.


Well I do think it has something to do with autism and the way her brain is wired.

The autistic mind is quite an empirical mind from what I can gather.  It believes what it can see and observe (if my Philosophy 101 definition of empirical serves me correctly, which is a big if).  It has a hard time with things which are conceptual and not visible, which is why things like sarcasm or irony are often confusing for autistic people.  I have a tough time with this sometimes with Maya, as I am often sarcastic and use irony a lot in conversation.  My go-to example of this is an exchange between Maya and I which used to happen often between us, which used to make me laugh myself silly.

Horsing around with Maya I would say, "Get off me man." and without missing a beat Maya would answer "I am not a man, I am a girl."

My point is that Maya accepts as fact what she can see and she takes things uber-literally

So when we go 8 nights giving presents she accepts that is the way it is and even though we have explained to her that Hanukkah is over she just got a present for the last 8 nights, her instinct tells her that she should get a present because for 8 nights she got one, it has become part of her routine and changing routines is something which is hard for Maya to grasp.  Her world makes sense if routines happen and it confuses her if they don't.  In many ways routines are how she defines her life and when they change, it throws her for a loop, it confuses her and it takes a while for her to catch up.

For instance, on Saturdays ever since Maya was 3, Leo takes Maya grocery shopping on Saturdays together with his mom and then they spend the afternoon over at my MIL's house.  It is their routine, she knows it backwards and forwards.  Actually anytime Leo is home during the day (as he is this week) Maya assumes they are going to get up, eat breakfast, get dressed and go shopping.

Leo's home = shopping = Saturday

Get it?

I mean for a long time Maya didn't really know the days of the week.  It was a concept that was hard to grasp.  At school they use a color system to teach this.  They start out that every day is a color and on the day chart at school they show what day it is through color.  The kids associate the color with the day and learn the order of it and eventually the names of the days replace the colors. Maya does know the days of the week now and she really doesn't need the colors anymore, but I can see it is the colors and not the actual names of the days which she relies on.  If she asks me what day we are going to do something and I say Thursday, she always retorts:  the blue day?  She uses the colors to confirm what I have said,  the visual always supporting the language.  

Last night when Maya was taking her bath I told her that we had to get up a little earlier tomorrow morning because I had to work, which meant that we would get up, get dressed and get in the car so Leo could drive me to my office.  And the first thing out of her mouth was, "but I have to go shopping with daddy."  Even though Maya now knows her days of the week and that tomorrow is not Saturday, daddy being home with her, automatically kicks Saturday's routine into place.

As a non-autistic person the best way I can explain it is that autistic people have a hard time relying on what they cannot see or visualize and that is also why when they learn something happens a certain way, that it is tough for them to let go of the notion.  It was this way, so it should always be this way.

I have learned over time to be very careful about what I say to Maya.  If I tell her we are going to do something and then we don't, that is very hard on her.  She just doesn't understand, I said we were going to do it, I said it, therefore it's fact.  I always have to manage her expectations very carefully, even in terms of silly things, like washing hair.  We wash Maya's hair every other day and she has come to depend on that, she knows which days we will wash and which days she will just horse around in the bathtub.  When I tell her it is time for her bath, she automatically asks "washing hair" even though she knows the answer and if I change it up on her, like for instance want to wash her hair tonight instead of tomorrow night, because I have something to do tomorrow night and it is just easier to do it tonight,  I get chapter and verse about how tonight is not the night to wash hair.  She will roll with the change, but I still get the sermon.

Oh, the sermons!

I don't say we are going to do something if there is a chance we are not, it's better to say maybe or we'll see.  If it is something she wants she will try to get you to say yes just so she can hold you to it later but if you say maybe and then we don't, she may not like it, but it doesn't confuse her, she understands what maybe means.  But yes, yes means yes.  It's a fact, a given, going to happen.  When yes, turns into no that is very hard for her to understand.

I am making it sound like Maya is merely stubborn but I am not talking about stubbornness here.  I know stubborn, I am stubborn, I invented stubborn. It's not that.  Maya relies on routines and part of her routines are grounded in what people tell her will or will not happen.  If it goes differently than what you have told her, it just becomes very difficult for her to understand what information she can rely on and what information she can't.

But tonight after dinner she came up to me and she said, "Hanukkah is over until next year, no more presents, right?"

I'll consider that a moral victory, thank you very much.

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