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
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.

Tuesday, April 23, 2013

Re Awareness

Gratuitous shot of Sweet Girl
rocking the Mitten Method
of piano playing
Every year I mean to write something weekly during the month of April.  Something meaningful and profound about autism and how awareness is a great step in the right direction but it sure isn't the destination.  I mean to do that.  Every year for three years now I've had that plan.  And then.....I don't.  Life or something closely resembling it intervenes and April swiftly flies away from me.  This year I've decided to re-run some previous posts.  Feel free to skip it or feel free to forward it.  If a journey of a thousand miles begins with one step, then I hope this helps motivate some people to move their feet.

What It Takes  
April 14, 2011

I've been meaning to write this for quite some time now.  Actually, I've been meaning to write this for 14 days.  But every time I sit down at the computer I just kind of stare at the blank Blogger page.  There are words here, but they don't want to come out.  There are important ideas and thoughts and emotions, but I can't seem to get them straight to make something out of them.  Probably because this post hurts a little.  This post is my "April is Autism Awareness Month" post.

Autism has been around this family for awhile now.  If one can be used to such a thing, then I'm used to it.  I think I, probably better than anyone else, understand Sweet Girl and what it takes for her to get through a day.  I have a pretty good sense of what needs to happen, what needs to not happen, and how we can deal with life intervening on both of those fronts.  We work hard so that the world is not too much, yet still ever-present for a little girl who prefers to live in her mind.  She rises to that challenge sometimes beautifully, sometimes maladroitly, and sometimes not at all.  It's often hard for me to watch and I know it is never easy for her.  

And the truth of the matter is this: I'm angry about that.  I'm angry about autism.  I love my daughter regardless of labels and ability; mountain high and valley low.  My heart is wrapped around her like a second skin.  I am not angry she has autism (though I've certainly had my moments  of "Why her?" as it seems that there really is no rhyme nor reason to where autism turns up).  I am angry autism still exists. I am angry that this has been happening for decades now and we are just now working on awareness.  That when her pediatrician said that I was probably right - my girl probably was on the spectrum and that means everything, and yet nothing, was changing- the only thing I walked out of the office with (besides Sweet Girl) was a shoulder squeeze and a "Best of luck."  I am angry that the mainstream medical community's "no known cause/no known cure" serves as the end all be all on the subject.  I am angry that the CDC is still studying rates of incidence despite three decades of exponential growth in the diagnosis.  I'm angry because everyone is so busy jumping back from autism with their hands in the air and saying "Not my fault!" that no one is making any progress on what can be done about it at all.

I know I'm not the first person to be angry about a disease.  I know some childhood diseases have been around much longer than autism with little in the way of treatment.  But if you aren't aware of autism yet- if you don't have a child, know someone with a child, have read about someone with a child with autism yet- you're either removed from all society or willfully obtuse.  The rate of incidence of autism has skyrocketed since the early 90s.  It now affects approximately 1% of children born in the US.  In the world the US ranks second (behind Great Britain) in autism rates.  And we are still quibbling over whether it's real or not.  It's real.  It may not be the child in the corner rocking back and forth that many people expect, but it's real.  As a matter of fact, as I write this, it's outside playing in the sandbox.

I could bore you with statistics; list theories of genesis and causation; discuss the higher rates in military families and Somali-Americans in Minnesota; tell you that we should take this seriously because we're raising more and more children that will not be able to care for themselves as adults, but all of that means little if you don't know what autism takes.  Because autism takes a lot.  Autism takes away milestones.  It takes patience.  It takes money.  It takes all kinds of therapies.  It takes time.  Autism takes away words.  It takes away friends and families.  It takes a huge effort for everyday tasks.  Autism takes everything you throw at it, and gives little in return.  I'm lucky, blessed beyond lucky as a matter of fact, because I saw autism take most of Sweet Girl and I've seen, every day, more and more of her come back.  Not everyone is that lucky though.  Because autism takes.  And if we're not careful, if we don't move beyond awareness to action soon, it will take a generation.  It will take a generation and that's impossible to get back.

So it hurt me a little to write these words, but not nearly as much as it will hurt me if I have nothing new to write about next April. 

Tuesday, April 2, 2013

Light it Up

Purple and sparkly
Well you knew it was coming.  I'm not consistent at posting, but this month usually reminds me that I have a soapbox on which to stand and a substantial set of lungs with which to share my voice.  April is Autism Awareness Month.  Today, specifically, is World Autism Day.  April is also the Month of the Military Child.  So, yeah, it's a big month for my big mouth.  I've talked quite a bit about statistics and what Sweet Girl does and what autism is like for our family.  It's part of my awareness campaign that doesn't begin and end in a month.  Mostly I designed it that way because autism doesn't begin and end in a month.  (Or maybe I designed it that way because I really was just writing without a plan, but the first idea sounds better.)  I've talked about the emotions that have hit me and my family in relation to autism.  I've talked about the challenges of diagnosis, treatment, and
day-to-day life.  I've talked about a lot of things.

The honest truth is I'm tired of talking.  I am one of many, whose ranks grow larger everyday, who have been talking about this for years.  Autism didn't just show up.  It's been around as an official diagnosis as far back as the 1940s.  People have been talking about it since then.  Celebrities and sports stars have had children or siblings on the spectrum and have used their positions to discuss what that means.  Scientists and doctors have been arguing about causes since one of them deemed that it was the fault of the mother (clearly a man, and clearly not the brightest of men), and then it was the fault of television, and then it was the fault of the environment, and then it was a host of other things - all deduced from thousands of studies, wasting who knows how much money, to find a correlation between certain things and autism.  And as any researcher worth their grants is aware; correlation is not causation.  Wasted money.  All talk.  Nothing truly ventured: certainly not much gained.  Talk, talk, talk, talk, talk.

I'd rather do something than talk about it at this point.  So today, I'm lighting it up.  But I'm not playing by the rules - autism doesn't seem to play by any certain set of rules so I feel it's appropriate - I'm not lighting it up blue like so many others are on World Autism Day.  I think it's a great campaign and I love the idea of a visual representation, but blue is not our autism.  Blue is melancholy and sadness.  Blue is reverent.  Blue is conservative.  Blue is calming.  Blue is mysterious.  Autism is none of those things in this house.  I won't lie.  Autism has made me melancholy and sad in the past and certainly it will throw that blue veil over me again in the future.  But I'm working hard not to let it.  Working hard not to let that blue obscure the sweet girl with whom it mingles.  And I'm sure as hell not calm about autism.  It's every blue word I can recall when it's considered acceptable and adequate care for doctors to look at parents, children, young adults, and adults who have questions about autism and say: "No known cause, no known cure."  And then send them out the door.  That actually makes me see red.  Nope.  Autism here isn't blue.

Also purple and sparkly
Lighting it up with bubbles
Autism here is purple.  Correction: it's sparkly purple.  It requires more than one primary color.  It demands to be seen and acknowledged for its brilliance.  It's usually pretty happy.  It's deeper than most give it credit for until they take a look at the layers that are required to create such a hue.  It takes a mixing of many things; hints and shadows of people and songs, tv shows, and iPad apps, emotions and crystal-clear memories.  At our house, autism fluctuates between the deepest violet to the palest lilac depending upon the day.  The sparkles are always there as well.  Sometimes as a mirror reflection for others and sometimes as a way to draw attention, regardless of appropriateness.  Autism here is sparkly purple.  So that's what I'm lighting it up today.  I hope you light it up too.  Whatever color autism is for you, I hope you don't just talk about it.  I hope you light it up.