Monday, July 2, 2012

Fashioning Filters

I have the Diana Ross song 'Upside Down' in my head for days now.  No matter what I do, it doesn't go away.  Besides being a good song from one of my favorite eras of music, it kind of describes life on the home front right now.

I will say that Leo and I really try to keep our home life calm.  We know that over stimulation really gets to Maya and often triggers her anxiety, frustration and that just makes it harder for her to focus, to concentrate, to listen and to do what she is asked to do.  She needs a lot of down time and a lot of predictabilty in order to maintain her sense of security which is key to avoiding her triggers.

We protect ourselves from overstimulation as much as we can.  Our weekends are largely very quiet, we allow ourselves only one weekend highlight and we, except under the most important of circumstances, always have at least one day at home.  We don't go from shopping, to the park, to swimming, to a birthday party, to the movies.  

We just can't.  Maya doesn't roll that way.  

I've said this before but Maya is pretty go-with-the-flow for an autistic child.  She doesn't need to have the same routine each and every day (although it helps) and she can do spontaneous as long as we prepare and give her time to transition.

Yeah, yeah, I know, I've just described predictability, not spontaneity, but just go with it.

Having a lot of shifts and change ups brings uncertainty to Maya, and uncertainty triggers the tantrums, the not listening and when Leo and I are really clueless, the meltdowns.  Certainty is her security blanket, it is in many ways the filter which her brain doesn't naturally have to block out the sensory messages that enter her brain at the speed of sound.  I am a firm believer that autism is actually exactly what they said it wasn't 20, 30 or 40 years ago.

For decades autism or autistic people were described as cold, unfeeling, even brought about by mothers who were cold and didn't bond with their children, creating children who could not bond or form attachments.  They preferred isolation because of this coldness.

Listen, I don't know much about autism but I know this, people with autism are not cold or unfeeling, they feel everything to the core of their being.  They don't have any- or very lmited natural filters in their brains so this is why they are hypersensitive to sensory stimuli and why they  react in non-typical ways.  They feel every single thing without the natural capability to shut it out enough to manage it into reasonable chunks.  Life for autistic people is sensory stimuli all the time, like having MTV blaring in your ears 24-7 with the sound just distorted enough that you can't understand anything but you can't shut it out either while at the same time flashlights are shining into your eyes and little needles are poking at your skin.

All patented torture techniques, I might add.

Try putting up with that for a day, hell, even an hour and I'll bet you that you will be throwing yourself on the floor screaming, wailing and unable to listen to reason either.  

Routine, consistency, predictability become the filters for autistic people from overwhelming, constant sensory stimuli.  When they can know what is next, what the order of things are, they have the ability to shut out these stimuli or at least push them far enough into the background so that they can focus to varying degrees.

People often ask me if I noticed anything was "off" with Maya when she was a baby or toddler.  And I can honestly say that at the time, no we didn't.  Maya was our only child and she hit her significant milestones on time, she rolled over, crawled, walked, talked (in two languages yet) all on time.  And I think in retrospect there were signs, but because Leo and I were first time parents and had nothing to compare Maya to and because she made her milestones, therefore no experts had any cause for concern either, we just missed those signs.

When I look back now, I can see that there were signs.  The fact that Maya was very difficult to comfort as a baby, that she didn't sleep well, that the act of me moving her from my arms to her crib was impossible without her waking up and then crying for sometimes hours before she could go back to sleep, hence she never spent a single night in her crib, she slept in my bed or in my arms or on me most of the time.  The fact that she crawled for a long time, crawling at 5 months but not walking until 16 months, her scratching at herself nearly all of her waking hours.  Her inexplicable fear of walking on grass or on a very shiny floor.

Yes, there were signs.  But we wrote them off as other things, Maya having colic, just being a baby or toddler, Excema, poor parenting.  For years I just thought I was not a good mother, not good in the sense of being a bad mother but I didn't have that seemingly magical ability to read my child and instinctively know what she needed to calm her, I just figured I was born without that gene.  

And as the years have gone by Maya has learned a lot about how to create her own filters, the lining up of toys in a certain order, the predictability of quiet time at home, scripting an episode from Thomas the Train or repeating a pretend story that she has played at school or with Violah.  Telling us she loves us, repeating back to us the things we say to her, that she is sweet, that she is a good girl, that we are proud of her.  All of these things are her filters, filters which we have created together with her, to help her to manage the sensory messages that come flying at her.

The last couple of weeks have been a little rough for her and unfortunately it will continue this way for a while.  After being away from home for 4 days at school camp she returned last Friday, then I had to go on a business trip for 4 days and on top of that, Leo's parents have been on vacation as well so her weekend routine is thrown off.  Things at school have been dicey the past week.  We had issues on the bus where Maya was very rowdy and disruptive, taking off her seat belt in the middle of the journey several times.  Maya also didn't do much in her school work this week, her aide called me and told me that she couldn't concentrate at all this past week and she talked incessantly about Thomas, scripting episodes and stories most of the day.  

The school year is coming to an end in just over 2.5 weeks and she will lose her routine during the summer vacation.  Maya loves vacation but the loss of the routine takes it's toll on her.  On top of that,   our current au pair will be going back home soon.  Maya is of course very attached to her and while she seems to be dealing with it okay, especially since she has recently discovered the wonders of Skype, this will be a big deal for her as it was when our last  au pair, Rodrigo left.  As unlike Rodrigo, who has stayed in the Netherlands and who she now sees from time to time, our current au pair will return to South Africa, which Maya understands is very far away.  Now when we talk about traveling, South Africa has replaced Australia on Maya's itinerary.  

And although Maya knows a new au pair will come in August (if the immigration office would hurry up with the VISA) and she is also South African and a very nice girl, Maya is not quite ready to hear about that yet.  So while I pepper it into the conversation every once in a while to keep preparing her, I heed Maya's signals when she tells me she doesn't want to talk about it.  The transitions are tough and like just about everything else having to do with autism and Maya, she makes those transitions in her own good time.  

There's just a lot going on in her world, and while Leo and I can try to balance that chaos, those sensory messages, that unpredictability with calm, security and by being with her in the moment, listening to her scripting and using our own scripting techniques with her, we cannot shut out the inevitable change going on in her life.  

But we can help her to navigate it in a way which might cost her less pain, less confusion, less overstimulation.  

Maybe that's really our job - to help her filter.  

This year I feel very lucky that I am able to take a whole month off of work so that I am with Maya every day during most of her school vacation, to just be a mom and for a month, discard the working off my title of working mom.  We plan to have a fun, but calm summer, mornings at home, afternoons by the pool and two glorious weeks at our rented vacation cottage.  

And I've told her this, I've tried to lay out what summer vacation will be like for her, so she can feel better about it.  We may hit a few bumps and curves on the road, one of us might even throw up from motion sickness (guessing me), but we'll get there.  

And if not, there's always disco.  

1 comment:

  1. Hello from South Africa!! :)
    Enjoy your month long holiday, it sounds like it is going to be a lovely one!