10 Words That Describe a Parent of a Child on the Autism Spectrum
What does it take to be a parent of someone with autism? I’ve been pondering the question lately. (Now that my children are adults, I actually have time for reflection.) I am the parent of two, one with Asperger’s syndrome and the other who’s not on the autism spectrum. Did I raise my children differently? The short answer is: Not really. Both of them have my unconditional love and attention. But I do think that having a child with special needs made me dig deep into my soul’s reservoir and activate the personality traits necessary to help him flourish.
So what are those traits? What words just pop into your mind to describe a parent of a child on the autism spectrum? I asked my autism community on Facebook this question, and the post exploded with responses! Using the community’s input and my own personal opinion, here is my top 10 list:
Lydia Wayman posted this word. She is a young woman on the autism spectrum, and she encounters parents at her speaking engagements and when she works at an autism resource center. She’s right. Every parent of a child on the autism spectrum I’ve been fortunate to meet in person or online is authentic and genuine. There is no pretense. What you see is what they are. None of us has time to put on airs.
Does the Energizer Bunny come to mind? We don’t have the luxury of slowing down as
we must keep on going and going and going to make sure are kids are receiving the best care and support possible.
Many posted “tired,” “exhausted,” but Rebecca Marcincak’s “over-caffeinated” acknowledges our collective fatigue and the fact that we push through (using whatever means possible). There’s no time to catch up on our sleep because our kids need us. So, double shot of espresso or another strong cup of tea please and I’ll be on my way!
Life is just so much better when you approach it with a sense of humor. I’ve seen a huge transformation in my son over the years. He used to take everything so seriously, but as he’s matured and gained self-confidence, he pokes fun at life (with a twinkle in his eye) and takes pride in being able to make others laugh.
I also think of Brent Anderson, an adult on the spectrum and popular speaker, who
enjoys sharing his literal mind and his “Unintentional Humor.”
I’ll bet you never thought of yourself as fearless. I know I didn’t. But I believe we are. There is no manual for raising a child on the autism spectrum. And there isn’t a central information hub for finding resources — therapies, schools, independent living, and employment. It’s up to us to seek those resources out and, often, fight for them.
We never let down our guards. Our ears are tuned to conversations — are they making fun of my child? Our eyes are constantly scanning left and right — is everything OK? Even though he’s an adult and living independently, I’m always aware of what’s happening in my son’s life to make sure he is safe and secure.
Our children first. Helping others in our autism community second. We’re committed and concerned about the needs of others first before ours.
We try not to worry or think about the future. We’ve all seen the statistics so, yes, we’re scared. But we’re not stopped by our fears, and we all try to take it one day at a time.
The word “warrior” came up several times. I like to imagine myself as the Asgardian warrior, Sif, battling my way through the world to clear a path for my son. Fantasy aside, it’s parents like Sharon Cummings who embody the warrior spirit. She’s just one mom who bravely stepped out her comfort zone to make a difference for her autistic son and the special needs community at large.
Just like their children…
So, what words would you include on our list?