Special Feature — Hear From Other Local Autism Warriors
By Kami-Leigh Agard
Special Feature — Hear From Other Local Autism Warriors
As April is Autism Acceptance Month, hear from other local caregivers of individuals on the autism spectrum. In this last installation, here is a flashback to 2018, when a local mom shared the following. Since the genesis of my column in The Rockaway Times in 2016, this is one of my favorite pieces that on numerous occasions I find myself going back to, especially on days when I’m yearning for a quiet, reassuring voice. For privacy reasons, her name and her children’s names have been omitted.
Authored by a local inspirational mother of three
I am a Rockaway girl, born and raised, and though I’ve lived elsewhere, when it was time to raise my family, I knew where I wanted to be. A private person, my idea of bliss is a walk along the shore or sitting under a beach umbrella with a good book. I am contemplative and philosophical by nature; the ocean is the perfect companion for me.
I am also the mother of three sons, the oldest of which has an autism spectrum disorder. Through my many years of parenting him, navigating schooling, assessments, socialization challenges, and sadly, bullying he encountered, I became an advocate with strong viewpoints about a flawed system and how society can improve its understanding of autism. This role made me outspoken and vigilant—a startling contrast to the quiet loner described above. But they co-exist, these two sides of me, and they have made all the difference to my son, who is truly the light of my life.
Living by the ocean, one cannot help tap into something spiritual—however one defines that term. One look at surfers during extreme weather or the lone nighttime fisherman at the shore, and you’ll understand. “Pray for surf,” the saying goes. The ocean reminds us that there is something far more powerful and mighty than we are. It is humbling and majestic, by turns our friend and confidante—or a fierce and unpredictable challenge to our concepts of stability and normality, as we found out so overwhelmingly from Hurricane Sandy.
Yet despite that difficult, painful time for our community, we cannot deny the appreciation for all that is important and cherished in life that we individually and collectively gained from that experience. The ocean is glorious, challenging, unpredictable, and inspiring all at once.
And so it is for an Autism parent.
When my son received a diagnosis of ASD, I hit the ground running. He was my first child, and as a new mother with no connection to autism groups or other autism moms, I felt isolated and overwhelmed. There was much to learn about the disorder itself, the how and why of the symptoms. There was a complex governmental system to navigate to ensure his educational and developmental needs were met. Thinking of that time, I remember feeling unmoored, worried, and struggling to make sense of it all, but I never let my issues take center stage. My focus remained completely on my son—-what was needed to make sure he got the right education and services. I knew that this little person, who some clinicians, teachers and society were so quick to label, put in a box and write off—was so much more.
So while I fought for his entitlements under the law, I also fought to make HIM see, and by extension the world to see, that although he has a disability, it is merely a PART of who he is—bringing many challenges, but beauty too—and importantly, that he does not have to let disability define him. And he totally got it. So when he was subjected to cruel, insensitive comments of bullies (“you’re brain damaged” is one that stands out) or judgmental reactions of random adults for merely being different, it hurt his feelings, but he was strong in his understanding that it was THEIR problem, indicative of THEIR limitations to view him solely through the lens of what made him unusual, and dismissive of his whole person. That I have been able to impart this understanding to my son is one of the greatest gifts I have given him.
As the poet Ralph Waldo Emerson wrote: “To be yourself in a world constantly trying to make you something else is the greatest accomplishment.”
My son is a kind, loving, introspective, sincere, compassionate and much beloved son, brother and friend. His school’s principal describes him as “one of the nicest people to have ever walked these halls.” He struggles with processing rapid-fire information, abstract thinking, grade level material, and may not be “sophisticated” with all the connotations that invokes in our resume-driven culture, but he has fought long and hard to challenge and motivate himself, even as others mandated by law to do so, failed him in this. He has confidence that comes from self-awareness and emotional intelligence. Most importantly, he possesses an enthusiasm and appreciation for LIFE and all it has to offer. Seeing that expressed by him is a precious gift not only to me, but to the world. It is humbling to witness and be a part of—like that mighty ocean—and inspires gratitude and awe.
I pray for a society, a world that can understand this fully, unconditionally, and make room for our kids, because they are beautiful, valuable beings who have so much to contribute.
