On Awareness/Acceptance/Whatever

Other years, I've tried to write a post about Autism Awareness/Acceptance Day/Month.  This year, I wasn't going to.  This is partly because the whole idea of an autism day or month seems to be very controversial, and I am not much into controversy.  For those who might not get why it would be controversial---from what I understand, Autism Awareness Month and the whole Light It Up Blue campaign was a brainchild of Autism Speaks.  Autism Speaks is not a well-liked organization with autism circles.  There's a variety of reasons, the big ones being that they portray autism very negatively often, and that they give very, very little money to actual help those with autism---most all their money goes to administration or to research.  They also haven't been too interested in having people with autism on their boards.  I would tend to feel these are pretty valid criticisms.  However, I know that most people who do things for autism awareness, like wearing blue or putting up blue lights, have no idea what the history behind it is.  I believe in taking gestures in the spirit in which they are given, and so I don't get that upset over all of it.

However, the other reason I'm not trying to write an autism awareness/acceptance post is that I more and more realize I am not aware of autism in general. Very few people are.  I am aware of one child, Janey, with autism.  And autism is only a part of her.  I can't take anything about her and generalize it to the larger autism world.  She is herself.  I can and do and will write about her, my daughter, and the joys and struggles involved in raising her, and I am happy if that helps others raising children with autism and if it helps others better understand what it's like, in my particular case, to raise a child with special needs.

Several times lately, I've seen writing about how in many ways, there truly is more awareness of autism than there was in the past.  I've noticed this.  When Janey breaks down in public, or when she doesn't answer someone who talks to her, or when she shows her unusual behaviors, I often am quick to say "She is autistic"  I do this partly to fend off those who might think she is misbehaving, and partly to do my own little part for awareness.  More and more, though, I get the response "Oh, I knew she was".  People are more aware than I'd say they were even five years ago of what autism can sometimes look like.

My hope is that there is a progression with issues like autism.  First, people become aware of it.  Then, they are open to helping with it, and open to government and schools and cities spending money to help people with autism.  You need to be aware of what is needed before you can understand why you need to give that help.  That is part of why I write here.  It's easier a lot of times to relate to one particular child than to a concept in the abstract.  I want to do my small part to make people aware of one child with autism.  I don't speak for anyone but Janey and our family, but in telling our story, if people become more aware of autism in general, I consider it a plus.

How did we spend our special autism day?  We had a good, quiet day.  Janey was quite happy all day (and all weekend).  She watched videos, played with her iPad, ate a lot and danced to music.  We took a couple car rides, including a long one to Dairy Queen (the closest one to us is a ways away) and she had chicken and french fries while we rocked to her car music.  There was of course a bit of screaming here and there, a little bit of arm biting, but a lot of happiness and laughter, too.  Janey, you have made me aware of autism.  You have led me to accept autism.  And I love you.

Dependents

I am not a very political person.  I don't have passionate political views on most issues, and I try to keep an open mind.  I have good friends on either side of the political divide, and I can see the reasoning behind their differing views.  There are a few issues I generally base my votes on---education and autism.  Not that many politicians directly address autism, but I look at what they say about disability issues in general, or if there's nothing there, other closely related issues.  It's the only way to decide that makes sense to me.  I don't know enough about the economy or foreign affairs or the budget to make a reasoned decision, but I know enough about education and autism to decide fairly well.

That being said, I want to quote my friend Michelle's post on Facebook yesterday (hope you don't mind, Michelle!).  It was on my mind all night.  It was so well said.  Here it is...

One day I'll be dead, and my child will be dependent on the kindness of strangers (taxpayers) to keep her alive. I sincerely hope and pray that society does not cast her aside for being an entitled, freeloading victim. Please put yourself in my shoes for one terrifying moment.

 That got me.  That really got me.  Because that's what it comes down to.  Someday, Janey will be dependent on the kindness of strangers, of those who make the decisions how money is spent.  Baring miracles, Janey will never work at a job that can support her.  She will always be dependent.  This is not her choice.  She would have no idea what being entitled means.  She is no freeloader.  She is the result of the chance we all take when we have children, when we, in fact, just live another day.  None of us know when it will be us that fate decides to disable, or to give a child with disabilities to.

I know there are freeloaders out there.  I know there are those that feel entitled.  But Janey, or indeed our family, are not them.  We most certainly pay taxes.  We get no money from the state or federal government for Janey.  Some day, she might quality for Social Security Disability, and at that point, I will apply for it, but right now, we support her.  And we pay Social Security taxes to support others like her, that are not in a position to support themselves.  And we do so gladly.  No-one likes taxes, but they are the best system devised for making sure there is a safety net for those who need it.

There are always going to be dependents in this society.  Or at least, I hope there will be.  A society that doesn't want any dependents scares me.  There are always going to be those born to need lifelong help.  And I dare say we are all better because of it.  When I see all the children at Janey's school with Down Syndrome, with cerebral palsy, with autism....I see some wonderful, amazing children that bring great joy to those around them.  Do we want a society without those children, without the adults they will one day become?  Do we want a society where there are no dependents?  I hope, for the sake of Janey and all those like her, that we most certainly do not.