Acting instead of "Awareness"
What does Autism "Awareness" Day signify to a parent of a child with Autism?
Nothing. We experience awareness every.single.day.
I’m aware of strangers staring, silently judging, and purposefully shaking their heads when they witness a tantrum or outburst in a store. I’m aware of the integrity I have to maintain each time I get “the look,” for I must bite my tongue to not unleash 7 years of awareness.
I’m painfully aware of Autism every time Paige or Peyton have to change plans or rarely experience spontaneity due to a hard day, or his inflexibility. As hard as we try to maintain normalcy for them, there isn’t a day that goes by that somehow has to be manipulated around Hunter’s needs.
I’m aware when Peyton asks if a food or treat at a party is “gluten free,” since wheat causes Hunter’s body to attack itself.
I’m aware when I sit in an annual ARD meeting at school and the diagnostician starts every year in the same manner: “Your child qualifies for special education services due to Autism.”
I’m aware every time I make a daily schedule, write a social story, repeat the same directions 8 times, or make an adjustment to my language, just to have him understand that the world doesn’t operate by one set of rules.
I’m aware that 80% of my attitude depends on his functioning at that moment in time.
I’m aware that some of the holidays that are supposed to be the happiest days can honestly be some of the hardest days.
I’m aware that we are often late to birthday parties, church, or other events due to the difficulty of getting our child out of the door. His sock seam is irritating; the tag in his shirt needs to be cut; special snacks needs to be packed.
I’m aware that some days I feel that I made our daughter grow up too fast, as life with a toddler with Autism and a newborn baby proved to be some of the hardest days of our lives. She just had to be “good,” because I couldn’t handle any more. I’m aware that I can’t remember the majority of Peyton’s baby days surrounding Hunter’s diagnosis day.
I’m exhaustingly aware on mornings like today, when my son was up at 4AM, fully dressed for the day, wondering where I put his favorite obsession at the present time.
I’m aware at theme parks, when we use our Fast Pass for those with disabilities to avoid complete meltdowns in line, as disgruntled patrons stare and attempt to figure out the disability, when we all appear “normal.”
I’m aware that Autism is the fastest growing developmental disability of children today. In November of 2015, it was estimated that 1:45 children have Autism. The NIH devotes a whopping 0.6% of their $30.5 billion dollar budget specifically to Autism.
I'm aware that a simple illness stole our normalcy.
I’m aware when there isn’t a day that goes by that we don’t think about Autism.
You see, for families like ours, we experience awareness 365 days a year.
So for Autism Awareness Day 2017, here’s what I ask of you:
Give grace.
Stop parent shaming.
Start encouraging.
Extend a hand to those in need, and perform a random act of kindness in honor of all of the warrior families out there.
Instead of lighting it up blue…
be the light for someone experiencing a little darkness.
#bethedifference #notjust1in45 #autismactionday
Nothing. We experience awareness every.single.day.
I’m aware of strangers staring, silently judging, and purposefully shaking their heads when they witness a tantrum or outburst in a store. I’m aware of the integrity I have to maintain each time I get “the look,” for I must bite my tongue to not unleash 7 years of awareness.
I’m painfully aware of Autism every time Paige or Peyton have to change plans or rarely experience spontaneity due to a hard day, or his inflexibility. As hard as we try to maintain normalcy for them, there isn’t a day that goes by that somehow has to be manipulated around Hunter’s needs.
I’m aware when Peyton asks if a food or treat at a party is “gluten free,” since wheat causes Hunter’s body to attack itself.
I’m aware when I sit in an annual ARD meeting at school and the diagnostician starts every year in the same manner: “Your child qualifies for special education services due to Autism.”
I’m aware every time I make a daily schedule, write a social story, repeat the same directions 8 times, or make an adjustment to my language, just to have him understand that the world doesn’t operate by one set of rules.
I’m aware that 80% of my attitude depends on his functioning at that moment in time.
I’m aware that some of the holidays that are supposed to be the happiest days can honestly be some of the hardest days.
I’m aware that we are often late to birthday parties, church, or other events due to the difficulty of getting our child out of the door. His sock seam is irritating; the tag in his shirt needs to be cut; special snacks needs to be packed.
I’m aware that some days I feel that I made our daughter grow up too fast, as life with a toddler with Autism and a newborn baby proved to be some of the hardest days of our lives. She just had to be “good,” because I couldn’t handle any more. I’m aware that I can’t remember the majority of Peyton’s baby days surrounding Hunter’s diagnosis day.
I’m exhaustingly aware on mornings like today, when my son was up at 4AM, fully dressed for the day, wondering where I put his favorite obsession at the present time.
I’m aware at theme parks, when we use our Fast Pass for those with disabilities to avoid complete meltdowns in line, as disgruntled patrons stare and attempt to figure out the disability, when we all appear “normal.”
I’m aware that Autism is the fastest growing developmental disability of children today. In November of 2015, it was estimated that 1:45 children have Autism. The NIH devotes a whopping 0.6% of their $30.5 billion dollar budget specifically to Autism.
I'm aware that a simple illness stole our normalcy.
I’m aware when there isn’t a day that goes by that we don’t think about Autism.
You see, for families like ours, we experience awareness 365 days a year.
So for Autism Awareness Day 2017, here’s what I ask of you:
Give grace.
Stop parent shaming.
Start encouraging.
Extend a hand to those in need, and perform a random act of kindness in honor of all of the warrior families out there.
Instead of lighting it up blue…
be the light for someone experiencing a little darkness.
#bethedifference #notjust1in45 #autismactionday
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