Sunday, November 17, 2013

"This is Autism"

Earlier tonight I saw these words:
Last Monday, Autism Speaks told the world that autism is: . . . living in despair . . . fear of the future . . .exhausted, broken parents. . . lost, helpless, burdensome children. . .  a national emergencyIf that's not what autism is to you, join us on Monday November 18th for the "This is Autism" flashblog.
And I wondered if, as the parent of a child who was diagnosed less than two months ago, I really knew enough to say anything at all.  But at the same time I remembered how I first felt when I ventured out into the great big online world of autism information and how frightening it was and how utterly different much of what I read was from my experience and in that moment I knew that I had to say something.  Besides, I couldn't help but think of those blogs that I stumbled upon that filled me with hope each time I read them.  So I went back, all of 68 days to bring you our little experience of Autism:

Sixty-eight days ago we found ourselves plunged into the world of autism when our pediatrician first told me that she was 100% certain that Mae was on the spectrum.  Since then I've written about our amazingly quick journey as appointment after appointment fell into place.  Sometimes I feel as though we've hurtled through the weeks and things are finally slowing down to a somewhat normal pace.  In some ways it feels like our lives have been transformed in the span of a season.

I still clearly remember those first hours, which were, after all, not that long ago, when I first came home and began to search for answers about the diagnosis we had received.

Autism.  I'm not sure that there's anything that the doctor could have said that would have been more frightening (short of a life threatening disease).  I knew nothing.  I knew stereotypes.  I knew that it was something that happened to other people, but not to us.  She made eye contact when she was a baby I remember thinking.  She hit all her milestones when she was tiny.  

But something was obviously going on.  I knew enough to know that it was beyond my scope of knowledge and skill to help her.  I remember sitting there, a smile frozen on my face as the doctor said those very words while Mae attempted to destroy the her stethoscope.  Earlier the doctor said had something like: "These things are expensive but they're great to give to kids because they're basically indestructible" and then I watched as Mae popped off the ear piece.  

Autism.  It felt like our lives had suddenly changed drastically.  It felt as though I was inside a snow globe and someone was picking it up and shaking it with all their might.  I was fine as long as I was busy, as long as I was moving, moving, moving, because I knew that if I stopped for a second I might drown in the waves of my own thoughts.  

I clung to the memory of the status updates that a certain friend on facebook would post.  She'd share brilliant words from her autistic teenage son.  And I began to heed the warnings of friends who told me that there was a lot of bad stuff out there about autism and that you really had to be careful what you got into.

Still it was inevitable that I would venture out to see what there was to find.  After all, how many of us, in this age of instant information, can resist perusing this information which we have at our finger tips, especially when we're so desperate to know what we're getting ourselves into.  It's like when your little one has a rash and you know you probably shouldn't start googling but you do and suddenly you're convinced that the toddler probably has spinal meningitis and that you should have been rushing to the ER ten minutes ago.  

Except that as I began reading some of the big websites about Autism I felt myself instantly rejecting it. No, the portrait that they were painting wasn't of my daughter or my family.  The little girl who curled up beside me and loved to snuggle on the couch in the mornings, my daring little ball of energy who was always up for a challenge, who's bravery never failed to amaze me, wasn't broken or damaged or diseased.  

And a cure?  I felt my stomach twist as I thought of what that could mean.  What would a cure look like?  While I would be grateful if we could throw open the doors of communication and suddenly have long conversations, where Mae could tell me her thoughts, would a "cure" take away that unassailable joy with which she sees the world?  Because while I want to help her I don't want to change who she is and as I learn more and more about autism it's become clearer and clearer that it is very much a part of who she is.

So I closed those websites and began reading the blogs and books of parents and autistic men and women who'd walked this road that we were setting out on, who'd come through the initial shock and who, while certainly facing struggles weren't crippled by hardship as other sites had suggested was the inevitable fate in this world without a "cure."  

These past 68 days have been life changing because I now understand a little bit more about this amazing little girl who I'm honored to have as a daughter.  As she's being given the tools she needs to communicate more and more clearly I find myself in awe of what she's achieves on a daily basis.  Pointing to three shapes and saying "star, moon, triangle" as she identifies each one may not seem like a huge deal to most parents, but to a mom who was used to not hearing her three year old say a single word for weeks at a time, they feel like a major triumph and have every person in the room cheering while Mae beams proudly at her accomplishment.  

As I wrote this post I wondered if there were really any words that I could say that could truly capture what autism means in this house.  It is no longer the frightening life sentence that it seemed like when I first heard the words.  I'm not certain I can really capture what comes to mind what I think of when I hear the word autism, but my thoughts kept settling on the cliche "a pictures worth a thousand words" and so I thought that it where I would end.  With a few pictures that I hope will ease some of the fears and misconceptions that so many people have about the diagnosis that set us on the path to beginning to truly communicate with and help our daughter:







7 comments:

  1. So beautifully written and presented, Cammie. I have a sister who is develop-mentally disabled and have seen the struggles and triumphs my parents -- and the entire family -- have encountered. I love what you said about how you don't want to "cure" your daughter of being who she is. She is truly a gift, as is evidenced through your wonderful picture collages. God bless you and everyone in your family.

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  2. This is beautiful. Thank you so much for opening up and sharing your story with your blog readers. God is truly extending you and your family the strength necessary to cope and help Maggie learn to interact with the world. You all are in my prayers.

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  3. Thanks for posting this. I hadn't seen the This Is Autism response. I've added my own.

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  4. I know so many people who despise Autism speaks I won't ever give them one dollar. We all have our little quirks even ADHD is considered a form of autism it makes me mad autism doesn't mean stupid or nonfunctional.

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  5. [big hug] we love you and will keep praying for you...i know we are far away and it seems like there's not much we can help. but we keep thinking of you and pray that God will give you all the strength and wisdom you need :')

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  6. Hi Cam, I actually haven't read your blog in awhile but just wanted to say how great this post is. My daughter is 3 and was diagnosed as low functioning autistic at 2.5. She is nonverbal although we are working on that with behavioral therapy. I hate big web sites like autism speaks and made the decision not to read it or any like it. I'm not sure how much information you've already found but there's a book called "The Out of Sync Child" that is a great resource for children with sensory processing disorder (many people on the spectrum have this in some form or another). Anyway there are a lot of ideas for the parent to do with their child. At least while you wait for OT. I will keep your family in my prayers.

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I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!