Still Re-Discovering Myself and My Daughter

Kami-Leigh Agard

Four years ago, when COVID-19 reared its ugly head and roared at the world, I succumbed to a familiar friend—isolation. While most were troubled with the reality of having to quarantine from everyday life to ebb the spread of the virus—folks, I was fine. It was like being viciously kidnapped yet befriending my kidnappers. And now in 2024, with again political allegiances splitting up families, turning friends into enemies; countless protests; this reimagined counter culture movement taking a piss on every mode of life; and personal challenges—isolation is again…tempting. However, through faith, a 15- going on 16-year-old relationship has blossomed and grown even stronger with my nonverbal daughter on the autism spectrum.

In 2020, I penned a column about navigating the pandemic with our special-needs children. This quote jumps out: “Use this time to discover your kids again.” This precious nugget of advice was given by Laura O’Connor Leonard, a Rockaway resident, veteran special education administrator and founder of ABA Tree. And folks, that’s exactly what I did. I truly got the time and space to (re-)discover my daughter, Soanirina, and what a precious luxury. My daughter became my solace. I started to look at her from a different lens. Instead of seeing my daughter with autism, I saw and interacted with JUST my daughter. Autism was still here, and I appreciated even more all the nuances that come with it. For example, I got the courage to finally take her for walks on my own. And folks, she’s FUN! Together, we would sing, skipping down the street without a care in the world. Indoors, we played games, laughed and ultimately became each other’s best friend. I would sing, “Soa loves her mummy, mummy loves her Soa—best friends forever!” and she would giggle and shower so much love with her eyes.

However, fast forward to 2024, with anxiety and fear creeping in for very different reasons, I again find myself looking to my daughter—for her spirit and courage.

My daughter, and two of Dr. Seuss’ seuss-isms continue to give me peace. The first, “Don’t cry because it’s over. Smile because it happened.” And the second, “Then, just when I could stand it no more, by chance I discovered a tiny trap door! I popped my head out. The great sky was sky-blue. And I knew, from the flowers, I’d finally come through to the banks of the beautiful River Wah-Hoo!”

Don’t cry and lament yesteryear’s and now today’s challenges, instead, focus on healing and be thankful for the time we can turn off societal pressures and just get to be present with ourselves and our children. The second, folks—that trap door is hope! Hope that life’s challenges and worries will sort themselves out. And now, clearly look out a once cloudy window and appreciate all the wonderful possibilities for yourself, our community’s families and special-needs children.

Rockaway, please join Rockaway Beach Autism Families in working towards putting our peninsula and Broad Channel on the map for creating fulfilling job and recreational opportunities for individuals on the spectrum. The spectrum of autism is wide, and you would be both surprised and pleased to know the skills and passions that our loved have to offer.

Also, as countless parents have shared, mental health counseling is paramount for caregivers to effectively care for their special-needs loved ones and the family unit at large. As the often-used adage goes: When you fly on an airplane, the flight attendant instructs you to “put your oxygen mask on first,” before helping others. Why is this an important rule for ensuring survival? Because if you run out of oxygen yourself, you can’t help anyone else with their oxygen mask.

For those of you new to this column—what is Rockaway Beach Autism Families (RBAF)? We are an alliance of like-minded individuals advocating for autism awareness, acceptance and education, while providing a plethora of recreational activities for families with loved ones on the autism spectrum. Our aim is to build inclusion, especially the educational, vocational, and mental health environments. Also, our mission is to reduce isolation of caregivers, share our experiences with other people who “get it,” and just be REAL in a safe, supportive and non-judgmental environment.

For more info on RBAF and ideas on how to further our mission, plus upcoming summer 2024 events, visit: Rockaway Beach Autism Families on Facebook or Instagram or email: kami@rockawaybeachautismfamilies.org