Build Your Autism Network
By Kami-Leigh Agard
Parenting an individual on the autism spectrum sometimes feels like being marooned on a ship in the middle of the ocean. Your immediate family and special child are your “buoys;” keeping your heart and faith afloat, amidst the menacing waters. Those waters could be the general public, the school system, governmental bureaucracies, medical practitioners and even your closest friends. I endured these sinking waves of isolation when I started the journey in parenting my autistic daughter. However, in September of 2016, after penning this column and later founding Rockaway Beach Autism Families (RBAF), I discovered other “buoys,” and learned the importance of building an autism support network. And folks, once I discovered that network, those menacing waters became calmer, less threatening and even to my greatest surprise, welcoming.
In the book, “Thinking Person’s Guide to Autism,” the chapter, “Getting to Know Your New Neighborhood: Reaching Out and Building A Network,” gives a great synopsis of why building a network is vital not just for your child, but you as a parent or caregiver.
Two key takeaways:
1) Building a Strong Network of Experienced Parents. Since founding RBAF, I have met parents from all walks of life, who I count today as friends. These special people made me feel like I’m not alone and have been such shores of support. At our monthly family support group meetings, we share information about new diagnosis support, managing challenging behaviors, picky eating, special education services, school placement and IEPs (Individual Educational Plan), bussing, ABA (Applied Behavioral Analysis) and other therapies, obtaining the Medicaid Waiver to access NYS benefits such as Self Direction, medications, special-needs medical practitioners and financial planning. Some parents have “been there, done that, wrote the book,” and are so willing to share their experiences and what they learned along the way. So, I encourage anyone caring for an individual with autism or other special needs to attend even just one support group meeting or an event. It may be daunting to share or ask questions in a room of strangers, but you never know what precious information you’ll glean or the new friend you’ll make. I can’t emphasize how much being with other parents has empowered and kept me on the course, navigating the system to get services for my daughter.
2) The Art of Self-Protection. There was a period when I dreaded bringing my daughter to family gatherings. On many occasions, I felt that she was either totally ignored or regarded as a circus side show. Folks would ooh and aah about how pretty she is, but then the barrage of comments: “Why does she walk on her toes?” “Why isn’t she talking? “Is she deaf?” and the worst, when she would gleefully prance around: “Control your child!” Then there were others who would restrain their children from getting too close to her, as though autism was contagious. I used to feel the heat rising inside of me, biting my tongue to refrain from cussing everyone out. Then I learned the art of self-protection by simply putting certain costly relationships on hold. As stated by the chapter’s author, “Your child’s diagnosis may change your relationship with your extended family and friends, and it is something you cannot prepare for or prevent. Friends who invariably cause pain can drag you down. Protect yourself and place friendships on hold if they are hurting your mental health.” Once I did that, holidays and birthdays got lighter because I was able to enjoy my daughter in settings that I knew she would shine, and most importantly, be herself.
To conclude, don’t underestimate the beauty of building an intimate autism network. And mind you, over the years, family and friends will come around, and slowly, you’ll let them in. As empowered parents and caregivers on a united front, we can shift the societal view of autism from “dis-abled” to resiliently “special-abled!”
Join RBAF at our next monthly family support group meeting on Thursday, March 21, 7 p.m. at Knights of Columbus (333 Beach 90th Street, 2nd floor meeting room). Plus, save the date! RBAF’s 2nd Annual Walk for Autism on the boardwalk is Sunday, April 21! Also, for April Autism Awareness Month, we have a bevy of events coming up. For more info, visit Rockaway Beach Autism Families on Facebook/ Instagram, or email: kami@rockawaybeachautismfamilies.org. “Join us in turning the tide for the autism community, one wave at a time.”
