Tuesday, April 30, 2013

The Wait of Words

A purple waiting room!!!
It's the last day of April.  Soon the awareness campaign materials will be put away.  Blue light bulbs will be switched out for the originals.  Toys R'Us will no longer be asking if you'd like to contribute money.  In short, autism will go into the background with other, also worthwhile and important, causes that do not have the spotlight for a month.  But for those of us who live awareness, who wake up and are steeped in the cause from the moment our feet hit the floor to the moment our heads hit the pillow, the campaign continues.  The campaign continues for better understanding of our children; whether they are verbal or pre-verbal, social or not, young or not so young.  And the campaign continues for better opportunities that suit beautiful minds with unconventional output.

I'm re-posting something I wrote during a previous April.  Feel free to skip it if you'd like and, as

Pretty in pink, but she's clearly purple and
sparkly.
always, feel free to share.  I'd like to dedicate it to the parents in the waiting rooms.  To the moms and dads, aunts and uncles, and grandparents that have waited through hours of therapies and evaluations:  the people who have lost sleep to research co-morbid conditions, endless acronyms, and co-pays; the people who have interpreted and facilitated; the people who have fought insurance companies and know billing codes by heart; the people who became experts in a million different things and found answers where none were offered.  To these people, I say thank you.  Because everything you've ever done for your child has made it a little easier for Sweet Girl.  The clouds you moved in the sky for your own child, allowed the sun to also shine on mine.  Thank you for that.  So it's the last day of April and the blue lights are going away, but we're still purple and sparkly here.  And if you ever need a reminder of how to light things up, I suggest you find a waiting room somewhere. 




Wednesday, April 4, 2012

The Weight of WordsI 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.

1 comment:

  1. Thank you for posting this again. I missed it the first time around. Or I didn't and I just forgot, which is par for the course for me these days. Either way, it's wonderfully insightful and beautifully expressed. Sweet Girl and my BamBam sound very much alike. I'm glad the good days are on the rise for both of them; they've worked hard for it.

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