Thursday, April 14, 2011

What it takes

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 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 it is never easy for her. 

And the truth of the matter is, 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 next).  I am angry autism still exists. That when her pediatrician said that I was probably right, 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 that front at all.

I know I'm not the first person to be angry about a disease.  I know some childhood disease 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.   

Friday, April 1, 2011

Food Bag Update

Sweet Girl and Little Man are both sick, as am I.  It's not pretty around here.  Even Oreo is down (he acted a fool when Ms. Carrie came for our ABA in-take interview and overexerted himself) and forced to act like a real dog.  That is to say, he has to sit on the floor rather than the furniture.  I'm thinking of putting in a ramp off the back deck so I don't have to carry him up and down the steps every time he has to go to the bathroom, especially since he has a bladder the size of a baby hummingbird's.  Then again, that conjures images of Sweet Girl strapping Little Man on the plasma car and sending him careening down said disabled doggie ramp.  Hhmmm....

Anyway, this post actually isn't about Sweet Girl and Little Man.  It's just a quick update on the food bag project I've given myself.  Shortly after I posted my intentions to do this, I received a donation from a friend in the mail.  I won't use her real name, as I didn't ask her if I could and she has a reputation of bad-assness she has to maintain.  And giving money to kids who may or may not be Bruce Pearl fans would hurt her street cred.  Suffice to say, it was extrememly nice of her to do and I wanted to make sure she knew it was appreciated and what I did with the money.

After discussing this project with Ms. Sara it became apparent that it's resources to buy food that's lacking (not the actual ability/want/desire to provide or lack of means of preparation) for these kids and their families.  In other words, there is someone there who would make the food if the food was provided.  So I switched the items in the bag a little.  They're still pretty easy to make but definitely require an adult, you know because adults are tall enough to reach a stovetop.  The food bags were dropped off yesterday after school (with two sick kids in the back seat greatly unamused by the whole event) and they'll go home with the kids today.

This is what our Project Oprah $20 donation provided (times 3, this is per family):
penne pasta
pasta sauce
can of corn
can of peas and carrots
loaf of bread
half dozen eggs

A big "Thank You" to one of the world's greatest Cardinals fans and future public librarian.  :)