Wednesday, April 25, 2012

The Prayer to Word Exchange Rate

I vividly remember the days when I would follow Sweet Girl around the house or the yard just hoping that she would say something.  Anything.  Anything at all.  She was two and half years old before she started calling me "Mommy" on a regular basis.  I just knew that if she were able to talk to me, then we would be able to handle anything that came at us.  She's scared of other people?  No problem.  We'll figure it out.  You tell me when you've hit your limit and we'll leave.  Sweet Girl likes to jump? Ok, we'll make that part of the daily routine to help calm you down.  But we can't do any of that until Sweet Girl could tell me.  Or that's what I thought.  I got used to observing her behaviors and finding any kind of pattern that was there.  I was a mothering super sleuth set to figure out how I could make the world more accessible to my daughter.  And I don't mean to brag, but I wasn't too terrible at it.  I quickly realized that singing was both a coping mechanism and a source of sensory input.  Lots of people around? Singing would help her deal with the anxiety that came with that AND allow her to have sensory input without having to jump on someone else's couch (which I discouraged, though I'd be greatly overstating if I said she never did it).  Also, the louder and faster the singing was acted as a signal for how close she was to overloading her threshold of tolerance.  For a long time singing in place of answering direct questions was an avoidance mechanism: she knew something was expected of her but she didn't know how to provide it and so she would default to a mastered skill - in this instance, singing.

I understood this and thousands other big and small things and that was ok, but it was exhausting.  Having to explain these things to other people; having to deal with only being 90% sure that I was interpreting this correctly; not knowing for absolute certain what it was that was bothering Sweet Girl; and never knowing exactly what hurt when she was in pain:  all that takes its toll on a person.  I remember the day she was playing in the backyard while I talked to a neighbor in the side yard.  Sweet Girl came running up to me crying and screaming.  From a distance I thought she'd found her way into shin-deep mud and was upset she was dirty, but as she got closer my neighbor realized she had stepped in an ant hill.  It wasn't mud on her shoes, socks, and legs but hundreds of black ants.  Thankfully my neighbor moved with enough speed to actually be useful (unlike myself who was still shocked and not just a little disgusted at the number of ants there) and stripped Sweet Girl of her socks and shoes while simultaneously wiping down her legs in a huge sweep.  I ran her inside and sat her in the sink with the cold water on her red welty legs, called the advice nurse, and gave Sweet Girl a dose of Motrin for good measure.  The good news is that it was black ants and not fire ants.  The bad news is the situation could have been a lot better if Sweet Girl could have told me (even while screaming which I would have been doing in her place) there were ants trying to eat her alive.

And so it was that I would fervently wish for Sweet Girl to find her voice.  If prayers were pennies, the heavens would be heavy and it would rain copper for years.  I lost sleep, cried a river of tears, and tried a host of techniques to inspire her to speak.  The first time she said "Mommy!" I cried tears or happiness.  The first time she put an original two word phrase together, I texted everyone I ever knew.  Her first purposeful sentence was the same as winning the lottery (well, emotional lottery...those words were precious but they have a crappy gold standard conversion rate).  I looked back on those times this weekend as my bowl of cereal was interrupted no fewer than ten times with "Mommy! Mommy!  Blah blah blah.  So forth and so on. Whatnot." from both Sweet Girl and Little Man.  I looked back on those times with all the wishing and praying and I thought: "Well that was stupid, Sarah."

Obviously I'm thrilled that Sweet Girl is a better communicator now and pretty much over the moon to see the progress Little Man is making in his quest to become the boss of the English language.  But gone are the days when there was any kind of silence to be had.  We still have some things to work out; Sweet Girl struggles with syntax and sentence structure in general and her speech patterns are still a bit stunted.  I often think she's learning English as a second language, whole body motion and song being her native tongue.  Little Man has pretty much been Repeat to Sweet Girl's Pete from the get-go, so it's not surprising to hear his need to narrate the obvious.  It's just so loud all.the.time.  I suppose, though, that gives me a better opportunity to revel in Sweet Girl's latest developments.  Like when she nearly shouted "I'm scared!"at me as I was performing a splinterectomy on her pinky.  I was scared too.  Or how she's starting showing possession not just of things, but people as well.  She yelled at her thief of a brother when he stole her Fisher Price barnyard animals: "Hey! That's mine!"  I let those two figure that one out on their own.  I am happy to report there were no injuries or fatalities to the barnyard animals or the siblings.  And when she walked into the living room wearing Sean's shoes she told me she was wearing "my daddy's shoes."  Wear them indeed.  And I suppose if my prayers were pennies then I've already prepaid for a million of her thoughts.  I just wish she wouldn't try to cash it in all at once.  

Wednesday, April 4, 2012

The Weight of Words

I can see the effort it takes for her to find the words.  She's trying.  She's been able to do this before.  But today is not a Good Day, it's not a Bad Day, but it's far from good.  She wants to answer the simple question I asked.  "What would you like for dinner?"  She's hungry and she knows what she wants, but after a minute to process the question and several more minutes of her opening her mouth, pausing, shutting her mouth, starting again, and then not quite grabbing hold of the words she needs, the tears show up.  I want to hug her.  I want to pick her up and tell her she can have anything she wants; to eat or otherwise.  I want to give her all the words I have jammed in my head.  I want to make it easier for her.  I want to clear a way for her to do all the amazing things I know she can.  I want to make the world see her and her courage and determination the way I do.  I want people to know that she forces herself to work twice as hard to communicate half as much.  I want people to know that she scripts and constantly moves and hums and sings all so she can calm herself enough to be around other people.  I want people to know that she does these things because I've asked her to do them.  I want people to know that I've asked her to do these things because I won't always be with her, and she has to have these skills to survive without me.  I want to make sure others know she's the absolute best she can be, and that she has made me better just by being near her.  I want to pick her up and tell her how perfect she is, and that we'll figure this out without the traitorous words that are eluding her.  I want to do all these things and I want to make her dinner.  So I wipe her tears and give her options.  She lights up when she hears one and runs to the refrigerator to get it.  Why does dinner have to be a war waged?  Why are the words so heavy?  Why did autism decide to show up for dinner?

On Great Days, Sweet Girl makes the words her own.  She takes parts of different scripts and generalizes them for everything around her.  On these days she even uses original and extemporaneous speech.  "Hey, Mommy!  I want to go swing! We need socks and shoes!"  So simple but so hard fought.  Eighteen hours of school, two hours of speech, three hours of ABA, and one hour of occupational therapy a week have given us that on Great Days.  Or my favorite Great Day saying so far: "Oh, Mommy.  You are my very best friend."  Those words tripped out of her mouth lightly, but it was a wonderfully heavy moment for me.  On Great Days you can ask her a question and she'll answer nearly immediately.  On Great Days, she might even ask questions.  She lives comfortably in her environment and deals easily with things that may upset her.  Those are the days when autism takes a break.  She transitions well, she talks to people, communication comes easily, and she is free of whatever it is that makes things hard for her.  She isn't burdened by the weight of words; she lifts and throws them easily.

On Good Days the words are heavier but manageable.  The generalizing becomes a bit more difficult.  This week at the park, she decided to slide down a fire pole.  Except she didn't exactly get hold of the pole and hurt her ankle.  Nana told me this when I returned from the bathroom so I went to check on her.  I asked how she was doing and she replied with a mixture of things I say and scripts from tv shows she's seen.  "Oh, sweetheart.  Oh, my leg.  You try to feel flying and your leg hurts."  I know her, so I knew what she was saying.  But if she were to tell a doctor this, I'm pretty sure more questions would ensue.  More questions would mean more anxiety.  More anxiety would add weight to the words.  Heavier words would mean more difficulty communicating.  More difficulty communicating would mean more anxiety.  Eventually you get tears and shrieking.  But this was a Good Day so I knew and gave the appropriate pre-schooler soothing attention.  No tears.  No shrieks.  No added weight to her words.

Bad Days are, well, bad.  Words are often just too heavy to be used.  Singing is ok; the music lifts the words on its own.  On Bad Days, Sweet Girl is like a computer on the verge of freezing.  You can hear the gears grinding when you make a demand or ask a question.  The fan kicks into high gear and it tries to process the request.  You click the mouse repeatedly, adding to the list of commands to execute on this already taxed system.  Eventually the computer grinds to a complete halt and you are forced to restart.  For Sweet Girl, it's direct questions.  On a Bad Day someone will ask her a question.  You can see the effort of processing the information, of taking in the request and formulating a response.  Sometimes you don't wait for her and you repeat your question or rephrase it.  That merely means more information for her overtaxed system to process.  Eventually she grinds to a halt in frustration.  But restarting for her is nearly impossible.  The words are simply too heavy.  The weight is too much for her.  She calls the retreat and leaves the situation, either physically or mentally.  Either way, she's gone.

Fortunately for Sweet Girl (and the rest of her family), the Great Days and Good Days outnumber the Bad Days now.  But that wasn't always the case.  She has worked so hard for two years to make that happen.  She can handle the weight of the words on most days.  But we have a long way to go before she is capable of independence.  We're lucky.  She's young so we have time to prepare her for that.  But not everyone staring down the heavy word autism has that luxury.  April is Autism Awareness Month.  (It is also the Month of the Military Child.  In our house they are one and the same.)  The CDC just released "new" prevalence numbers: what was once 1 in 110 is now 1 in 88.  More than one percent of children in the United States are considered on the spectrum.  More than one percent of the country's children have their own versions of weighty words, Good Days and Bad Days.  More than one percent has to work twice as hard for not as much gain.  Autism comes to dinner for more than one percent of the children in the United States. That calls for more than awareness in my opinion.  It calls for action.  No matter how heavy the answers are, more than one percent deserves some answers.