Tuesday, April 06, 2010

Autism Awareness Month & How I got here

Last April was our first Autism Awareness Day, month, year...We received our sons diagnosis of living with autism right before Christmas Dec. 2008. So welcome family, friends and newly diagnosed ASDers!
Before I move on I am going to address a situation that has fire stormed through the Autism Community, a little blog from a woman who goes by Smockity Frocks. if you search for her name you'll come across the cached version of her blog (love the technies who did that!) because she took her post down. Before I address her comments let me give you a little background...
I am the third of four children, My oldest brother was born with severe cerebral palsy, My parents bucked the tradition (which I found out later horrified a set of my grandparents) and raised him at home with the rest of us hellions (we were trust me). I grew up with people openly staring, muttering or outright saying things to my parents, brother or he rest of my siblings; I grew up with Doctors telling us every year my brother was going to die (he's 44). I grew up in a house of love, understanding, compassion and understanding the great gift of life. I have always been an advocate for special needs. My parents taught us not to judge but to offer assistance. We might have been hellions, but we had manners and offered to help others. For awhile we lived in town, on a street with many other disabled kids, I thought every family had one. Then we moved I found out most people wanted no part of "different". I remember my junior year in high school I was out with members of my swim team, when we ran into a mother with 3 kids, 1 child just having a complete meltdown, the mother was trying to calm the child ( I now know the immediate signs of autism, but not back then) I saw my mom with us four and my brother having a fit because his schedule was interrupted. The other kids were laughing and saying she needed to control her kids (the other 2 were quietly picking up spilled packages & purse). I did what was natural to me, I offered help. The woman asked if I could escort her two other kids to her car while she carried her son. I introduced myself and the kids walked next to me while we walked to her car (about a 10 min walk). The kids were 5 and 7, their brother was 3. My teammates literally were stunned and just stood around waiting for my return. The mother thanked me so many times. I explained that I had seen it before, I understood, really understood and hoped the day got better for her & her family. When I returned to my teammates that asked how I could that, I asked how could you not?
So as the world turned and I grew I older, I married had kids and received my child's diagnosis of autism.

Dear Smockity,
I'm sure you have never encountered a child that was different than yours before. I am aware that most of the population of the US does not know the signs of autism or other development delays. (though for 1 child in 110 to be diagnosed, your town must only have 100 people in it). I'll try to keep my sarcasm to myself as much as possible, kind of how you kept your humanitarianism to yourself. I have seen the looks and the thoughts flitter across people's faces when my son runs to me to tell me "that girl/ boy is crying, they are sad" and jump around joyously because they knew that. My response is "that is great I'm glad you knew that, what do we say to someone sad?"
a pause the fingers are flying and smile creeps on his face "are you okay?"; that is right, very good I respond" he dances in a circle and wants a bear hug. " Did you ask them if they are okay?" ; " No" he tells me then runs over to the person and gets within a millimeter of their face to look at their eyes and say "are you okay?" then runs away to me to tell me. We clap and high five and give bear hugs. It has taken 18 months to get here and no one, not you, your friends or others like you will take away our accomplishments!!
I had one parent on an occasion like this ask me why did I praise him over and over for him for that feat. So I told her " my son lives with autism, he does not understand facial gestures, emotions we've had to teach him what most people learn naturally. He has problems socially, and being able to do social activities, but he has other strengths - he's know all his planets, descriptions, order, and other facts; he knows over 40 country flags on sight. Most 3/4 year olds do not know those. So this is a big thing in our world, he recognized an emotion and reacted appropriately". The other woman looked at me and smiled," Well then congratulations to him and we hope to see you here another time.. by the way your child was the only one to ask my daughter is she was okay (there were 10 other kids, 10 parents there that day).
So you see Smockity, our kids, siblings, aunts, uncles and friends who are different do feel and can be hurt. Do you understand what your blog did it hurt the parents, friends, families who have been in that family's shoes or hope their child will be to that point one day. I regret the anger and malice some shared with you, but understand you ripped off some pretty tough scars. Thank you for your apology, but what I wish for most is your understanding and your awareness. Yes you set off a fire storm, but use it like I am to spread awareness, not just of autism but other disabilities, teach your kids, your friends and your subscribers.

Happy Autism Awareness Day,
Jenn