Parenting a child on the autism spectrum can sometimes feel like being marooned on a ship in the middle of the ocean, where you feel abandoned or isolated with little hope of ready rescue or escape. Your immediate family and your special child are the only people who are your “buoys” to keep your heart and faith afloat, amidst the menacing waters. Those waters could be the general public, the school system, various government bureaucracies, medical practitioners and even your closest friends. I endured these sinking feelings of isolation when I started the journey in parenting my daughter with autism. However, four years ago, after penning this column and founding Rockaway Beach Autism Families (RBAF), I discovered other “buoys,” and learned the importance of building an autism 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 keys takeaways for me were:
1) Building a Strong Network of Experienced Parents. Since founding Rockaway Beach Autism Families, I have not just met parents from all walks of life, but even count them today as friends. These special people made me feel like I’m not alone and have been such shores of support. At our monthly support group meetings, we share information about new diagnosis support, managing challenging behaviors, picking eating, special education services, school placement and IEP support, bussing, ABA and other therapies, accessing state benefits, medications, doctors 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 in their journey parenting their child. So, I encourage anyone caring for an individual with autism to attend even just one support group meeting or attend a special event. It may be daunting to share or ask questions to a room of strangers, but you never know what you’ll learn 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 the best services for my daughter.
2) The Art of Self-Protection. There was a period when I dreaded bringing my daughter to gatherings hosted by friends or family. I’ve endured many experiences when I felt that my daughter was almost treated like a dog unwelcome in their house. Everyone would ooh and aah about how pretty she was, but then there were the comments, “Why does she walk on her toes,” “Why isn’t she talking? Is she deaf?” and the worst, when she would run 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 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 existing 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 importance of surrounding yourself with like-minded people, who understand the world of autism. Mind you, over the years, certain family and friends will come around, and slowly, you’ll let them in. As empowered parents on a united front, we can shift society’s view of autism from "disabled" to “divinely gifted."