Autism Awareness Month is Every Day

I have mixed emotions about the official designation of April as the Awareness Month for Autism.  Don't get me wrong, I'm thrilled that people are starting to pay attention.  It's absolutely needed and honestly, anything that raises money to help people with Autism and their families, well I'm on board 100%.  It's my personal reaction about seeing Awareness things that get me.

I don't own any puzzle piece jewelry.  I have no t-shirts with cute pithy sayings about Autism.  I can't.  Every time I look at them I get this weird clench in my stomach.  I wonder if women with Breast cancer feel the same way about October and the Race for a Cure stuff.  The pink ribbon...do they cry a bit thinking, I wish to God I didn't need to see this stuff?

Obviously in my family every day is Autism Awareness Month.  Trust me some days, it does feel like a month in a single day.  Every day I either my husband, my son, or I get it rammed down our throats that there is always something "off" with either or both of the girls.  They do fantastic at school and fit in with the mainstream beautifully but at home..well that's a different story.  Think of the toddler.  The child that behaves so well for preschool and then comes home a holy terror?  A street angel but a house devil is a phrase I've heard.  That's what it's like with my girls.

However if I'm honest I have to say out loud to the masses that we are lucky.  We have it so good compared to others.  Yes, I'm pulling my hair out because Connor is obsessive compulsive and asks the same question 15 times in a day.  However she speaks.  I know children her age who don't.  Connor's fear of being alone is backbreaking some times.  However, with the right therapy she has improved.  I know many kids her age who will never improve.  Tessi's temper is such a nightmare we live in fear of setting her off.  But I do know some tricks to help stay a tantrum.  I know many kids who fly off the handle with no warning and are gone for hours...no I am not exaggerating for HOURS before they calm down.  The next time your small child tees off and pitches a fit in a store for 15 minutes I want to imagine that horror for another hour and 45 minutes.  Only you can't just leave like the all-knowing adults around you advise because you have to buy food for the family and it's the only chance you have to be at the store.  Please think about that.

Yes, we are lucky.  However we are still in the club.  A club no one ever wants to be a member of and there is no way out.  My daughters will never be cured.  No matter how well they do there will always be a real chance of failure because of how their brain processes information.  They think differently than the world around them does.  It's always been a foregone conclusion that my son will go to college and be able to get a job that he wants and support himself.  Most likely my daughters will be able to.  But it's not a given.  They must do extra work, learn how to do things differently, live outside their comfort zone to have a chance at success.  If they do all of that, they SHOULD be ok.  And they are the lucky ones.  I am congratulated by friends whose children were in therapy groups with my girls as having "made it" - you see, their kids haven't.  I just congratulated a friend who's 8 year old son has recently been toilet trained.  Still using pull ups at night of course, but during the day...!!!  This was a major accomplishment for him and his family.  Think about when you were training your 2 or 3 or even 4 year old...imagine still doing that at 8.  In some ways I think it's easier if you know there is no hope of toilet training or whatever "normal" thing you're trying to accomplish.   If there was no hope then she could have moved on, dealt with the pain and learned to adapt.  My friend has been living the last 6 years in limbo, hoping it would happen. Knowing if she just found the one trick, the one way to reach him, she could have helped him succeed in minutes.  Feeling the failure of not succeeding...

For the rest of this month I'm not planning on typing any major diatribes about Autism or being aware.  On my Facebook page I'm simply going to put up some pictures that speak to me in a serious or funny way-depends on my mood swing.  I will ask this, if you are able to spare any money at all please consider giving to Autism Speaks or any local Autism services provider.  I know money is tight and we all have problems but even $5 will help.  The next best thing you can do to help is to publicly mock and put down Jenny McCarthy and those anti-vaccine nutters.  They have done nothing to help a single child and but have done loads to hurt them.

Science and doctors may not be Gods but they are not the enemy.  Please take time to educate yourself.  If you know someone who cares for an Autistic ask them what they need for help.  Or just stop one day and tell them they are doing a good job if their child has shown up in clean clothes and isn't screaming.  Some days, that's all we have.  Remember, we're the "lucky ones" because our kids have somewhere to show up.