Tuesday, April 2, 2013

World Autism Awareness Day? Or why am I not lighting it up in blue today?

Well, I get asked all the time why I don't have a blog.  The answer, until now, has been "what can I add that isn't already out there?"  I don't really know if I can add anything else to the world but thanks for coming by anyway :)  I'm really not one to do things by half so I might as well start out being controversial.

Yesterday was my youngest daughter's 9th birthday.  Birthdays, by rights, are celebrations.  Even when you start to wish you could back up a few. They are also points of comparison.  Where was I last year at this time?  What will I be doing next year at this time?  I have 3 daughters so I naturally compare them.  I compare what each was doing on their 9th birthdays.  Parties, lots of friends, at the tops of their classes for grades, big readers, and so on... Yesterday was different.  Just a family of dear friends over for cake.  Ones that understand that she will be overstimulated by the activity and probably be more than a little wound up.  Ones that won't judge that at 9, she is really more like a 5 year old.   

Today is World Autism Awareness Day and April is Autism Awareness Month.  Interestingly, since my youngest daughter's birthday is April 1.  She is my child that is smack in the middle of the Autism Spectrum.  You could say that I am fully aware of Autism in all its forms.  I joke, often, that I live in the house that Autism built.  There are 3 in my household that live with the various issues that Autism brings into lives.  If you are not already "aware" here are some issues...speech delays/communication problems, social interaction problems, anxiety disorders, Obsessive Compulsive Disorders,  repetitive speech and behaviors, noise and light sensitivities, tendencies toward over stimulation, ADD, medical issues including but not limited to gut problems, weakened immune systems leading to many infections over the years, food sensitivities/intolerances/allergies... I could go on but I'd depress myself and you so I'll stop there (for now).  2 of the 3 function at a point that makes life manageable as long as diet and supplements are adhered to and other environmental intrusions are kept at bay.  My youngest is not so lucky.

I'm not following the "Light It Up In Blue" campaign because I think the world is plenty aware of Autism at this point although most of us had never heard of it 15 or 20 years ago.  What I'd rather support is a World Autism Eradication Day.  Or World Kick Autism's Butt Day.  Or a What Are We Doing to Our Kids Day.  There are 2 camps in the world of Autism.  The first is the "My child is fine just as they are.  Embrace the Autism".   The 2nd is "Autism SUCKS!!  What can I do to get my child back?".  Guess the one to which I belong?   Embracing is for gathering someone in for a hug.  Accepting is to approve or react affirmatively to something.   I love my child more than life itself but I will never embrace or accept the thing that rode in and forever altered my child's future. Autism is the proverbial "thief in the night".  It sneaks in and steals.  It steals futures.  It steals plans. Both hers and mine.  I never in a million years thought that I would spend my 40's as a grassroots fighter.  An activist? Me? Nah, no way.  "When my kids are all in school, I will go back to my career as an Instructional Designer and Corporate Trainer" said my past self .  (What is that quote about making plans and God says Ha?)  Autism also steals finances and security.  Did you know that as of a few years ago about 85% of Autism families ended up losing their homes and/or filing bankruptcy to pay for schools that cost more than Harvard and therapies that are just now being covered by insurance?  Hopefully, that number is going down. Autism also steals relationships.  About 80-85% of marriages are chewed up and spit out. Families change. Grandparents get to learn about a world that didn't exist when they were growing up.   It also steals the pleasure of a gooey, hot Cinnabon cinnamon roll.  No more gluten allowed in this house.  Yes, I am allowed to dream about gooey, hot cinnamon rolls.  I swear, I can smell one right now :)

I promise, not all entries here will be depressing.  This is just one Awareness Day I can do without.  I will share on here what steps of the fight have helped.  How she went from only speaking in a form called echolalia to being conversational.  Yummy gluten free and Paleo foods.  Where to start if you are looking to alter your health.  Occasionally, how to build a rockin' headboard out of reclaimed fencing lumber. How to fight off the Zombie Invasion (just kidding, I hate zombie stuff). 

Here is a quote from my girl this morning that has made me giggle all day.  "This mirror smells good"  If you can figure out what that means, you must be a more enlightened traveler on this road than I am...

6 comments:

  1. Oh Denise, I get this. I get soooo much of it, right down to the grandparents, the marriage and the activist. When did we get the vote in this? Yet at the same time there is NOTHING we wouldn't do for our kids. Thank you for your blog. I've a ton to add, but I'll wait. For now, I'm going to re-read this. Its not often that I find too many others that really understand this or maybe not enough have spoken up yet. Our journeys our similar, but yet only slightly different. Nice work Denise. :)

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  2. Thank you, Kristie! I really appreciate it!!

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  3. Checking to see if I can comment

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  4. You are amazing. I just enjoy reading about all the things you have found that have made a difference in you and your children's lifes. Thanks for sharing!

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  5. Nice job! Cannot wait for continuing education. Good on ya warrior mama.

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