Thursday, June 14, 2012

The Hall of Mirrors

How many times as a parent do you find yourself having to repeat the same things over and over?

It's par for the course and one of those things they don't really tell you when you are thinking of baby names, shopping for a stroller and planning your baby shower.

Of course on some level you expect it, because you spent your own childhood not listening and hearing your mother bark the same orders to you over and over and over while you said, "yeah, in a minute ma." But somehow you think when you have kids of your own it will be different, you will be such a cool, hip parent that your own kids will hang on your every word.

Yeah, right.

But then the reality sets in - and you find yourself turning into your own mom and dad.

Kids don't listen, it's their job.

Sometimes when you have a kid on the autistic spectrum, they are V E R Y good at their job.  Like extremely good, like the Olympic gold medalist at not listening.

Listening has always been a struggle for Maya us.  When Maya was a toddler she didn't listen at all and when I say at all, I mean at all, none zero, bupkis.  We would get ready to leave someone's house and instead of her just coming over to get her coat and shoes on, I would have to run all over the house for 20 minutes after her trying pitifully to get her to stand still long enough to get her arm inside her coat and one shoe on.

Most of the time the scene ended up in a tantrum with us carrying her to the car, arms and legs flying all over the place, her screaming bloody murder with me trying to use her coat like a blanket and keep her from catching cold and only then, in the confinement of the car seat could I get her together.

Believe me it was embarrassing when you'd be there and see other parents do it relatively easily, their kids didn't listen either but with some cajoling, with a side of picking them up, peppered with a little harmless bribery, within 5 minutes kids were ready to go.  And while I struggled and tried not to lose my composure (sometimes failing miserably), other parents tried to give polite smiles but their eyes said everything they were thinking.

And as if that wasn't bad enough, I was thinking it too.  Boy what an incompetent mother, she has no control over her child, her kid is wild.  What are they/we doing?

It's hard to really know how much of Maya's listening issues are autism and how much are just kid, I know it is both, but it was always exponential not listening in her case, way way way beyond typical kids.

Everything was tough.  Every morning, getting dressed, brushing teeth, going to the bathroom, getting her down the stairs was often a painful and humiliating struggle for all concerned.  Me, as I would try to talk her into taking a step or coming with me to the bathroom and getting ever more desperate, often with the school bus waiting outside and Maya steadfastly refusing to budge and to have to make the choice between picking her up and forcing her which would for sure bring on a meltdown or keep trying to nudge her inch by inch and praise her when she finally got there.  I lost my cool many times and  and I'll say it--I got angry.  I yelled, sometimes I yelled frantically.  And then I would feel guilty for being angry and yelling.  And Maya would just stand there, sometimes melting down, sometimes just looking up at me confused, sometimes just shaking her head furiously to block me out.

It was awful.  I dreaded mornings.  How can you dread mornings?  I didn't even know that was a thing, but it is.

It took a while, but eventually we learned that this happened, not because Maya was being defiant, but because transitions are extremely tough for her and because Maya didn't always understand what is expected of her.  It takes her time to process spoken language.  She understood the words we were saying but couldn't process them into action.

Pictograms helped enormously and we still have the picto stories of the morning and evening routines hanging in our hallway.  We don't use them actively anymore but they are a badge of honor reminding us of how far Maya has come, how much she has learned.

How much we have learned.

We also over time learned how to better prepare her for transitions, so now before we go to someone's house we review with her what will happen when it is time to go and what her reaction should be and a good half hour before we are ready we tell her we are going to go soon, and we remind her and as the minutes get closer we tell her in 10 minutes, in 5 minutes and so forth.  It's still tough for her and we don't come away unscathed every single time, but most of the time, it's okay, relatively painless, without meltdowns and resolved with inside voices.

When you talking about a kid, autistic or not, most of the time is pretty damn good.

The biggest confirmation of Maya's listening comes not in the form that she does what she is asked always but through her imitation of us.  Maya's fantasy world is large, beautiful and in mega-technicolor, she has whole worlds with her stuffed animals but there is nothing and I love hearing her play with them and what little stories she has made up for them.  Her back stories can rival the characters on Lost, they are that intricate.  But nothing causes me to smile more than when I hear her tell her stuffed animals something we've been talking about like last week when she told her bear that it was fun to try new things.  Or today when Maya's bus driver told me that she took her seat belt off in the bus on the way home because she was playing with her friend L and standing up in the bus, she told her elephant how important it was to keep their seat belt on and made him promise never to do it again.  Or like how we play memory game on the iPad and when I get a match she says "Go-od!" in pitch perfect Western Pennsylvania drawl.

It sinks in.

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