Advocacy, Autism, Parenting

An Autism Mom Who Speaks Up for Autism Awareness Month and Why Other Parents Should Too

April is Autism Awareness Month bringing a tidal wave of attention to individuals with autism.  There is so much packed into this month it is like untangling a ball of lights.  The month ranges from celebrating the unique strengths, accomplishments, and progression in opportunity for people with autism.  Also, it promotes strengthening a community’s understanding of people with autism, levels of severity of autism, and conditions associated with autism.  
     As a parent of a child with autism, there are times, that I feel offended to have a month where people dress up in blue, wear armbands, create fundraisers, and host work events for autism awareness.  Only because I live with it every minute of every day and it is no picnic.  However, I put aside this frustration because I believe that this month may be the most critical month of my year.  Why?  Well, because it gives people the confidence to share their autism stories that otherwise might not be shared.  The truth is autism is brutal.  It is a condition, not a disease, there is no cure.  Autism impairs social communication skills, provokes sensory seeking or sensory avoidance behaviors, and impacts a person’s ability to build healthy relationships.  The things parents of typically developing children take for granted become carefully orchestrated events for parents whose children have autism.   Here is a short list of what “autism” parents may contend with daily:
-strategically schedule outings 
-necessary visual supports
-making lists and sticking to them
-buying specific types of clothing and food
-developing a backup plan in overstimulating environments
-tolerating the disapproving looks from strangers when our child acts out
-nodding politely at unsolicited advice from well-meaning individuals
-weeding through the saturated market of “autism” products 
-sorting through the millions of opinions, theories, and advice from poorly researched studies      
It is exhausting.  
    One month a year should feel nonsensical, but for me, it feels absolutely sensible.  All of the things listed above reaffirms my belief that this is the most crucial month of the year for autism.  I refuse to let myself wallow in bitterness when an opportunity has been afforded to bring global awareness to the condition that creates nothing but obstacles for my child.  There are many parents whose children have rare yet debilitating conditions where research has limited funding, limited awareness, few specialists spread throughout the world, and scarce but desperately needed resources.  I am almost sure that parents of these children would jump at a chance for a global awareness month.  Therefore, I refuse to balk at this opportunity, but embrace it and feel lucky.  Yes, lucky, despite my child’s autism.  Lucky to have a chance to share my story, celebrate my child for all the gifts he has been given, and raise money for all of the wonderful autism programs at my fingertips.  I understand the perspective of parents whose lives have been so profoundly impacted by autism that embracing this month is ludicrous and emotionally impossible.  I encourage parents to consider that awareness brings understanding, understanding brings acceptance. Which is why I am thankful for the opportunity and benefits that April brings to the autism community.  Every month, in my home, is “Autism Awareness Month,” but I am very grateful to have April as Autism Awareness Month existing outside of my house. Thank you, thank you, thank you, and turn your blue light on!

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