Finding Your Support System in the Special Needs World
Children’s Cerebral Palsy Movement (CCPM) works diligently to create a support system for families in Orange County and Southern California.
This week, we’re hearing from Jennifer Puebla, CCPM supporter, donor, and special needs parent as she discusses the challenges of raising a child with Cerebral Palsy and the importance of having a strong community behind you.
“Call it a clan, call it a network, call it a tribe, call it a family: Whatever you call it, whoever you are,” shares novelist Jane Howard, “you need one.”
Last year, I found myself harnessed 50 feet in the air to a steel cable, edging along a ropes course with coworkers, unsure if my chubby legs would carry me to that zip line finish, or if I’d plummet, needing an embarrassing rescue. I did get that big zip line payoff, but I’ll confess it wasn’t because of grace or strength. Hands down, it was due to the support and encouragement from my coworkers, as we each worked through this shared challenge.
I couldn’t help think of this as a metaphor for daily life as a special needs parent. It sometimes feels like being uncomfortably harnessed to a steel wire, every single day, not knowing if that next step will be well placed. But, it’s arguably trickier, because there isn’t a ready-made team alongside, encouraging you along. And, as Jane Howards says, “you need one,” as does your child! And truthfully, somewhere, someone just like you does as well.
When my son got his diagnosis, I struggled in between therapies and teacher meetings trying to find others on that same journey. And, there’s rarely a roadmap, is there? The good news is that I finally did find my tribe, and so can you. It took some courage, but I decided to be open instead of private, and started talking—to therapists, teachers, doctors and neighbors—and harnessing that power of search engines and social media. I discovered there are a multitude of social groups for special needs children which immediately brings them, and consequently parents like us, together. Turns out, there are lots of people just like us looking for each other. Many of them have become like family to us–close enough in needs, helping each other along. We share our successes, as well as the challenges that only we understand. Not the stuff you bring up at the neighborhood bbq, right? We’ve committed to bi-weekly get-togethers. Not always easy, but the benefits far outweigh the efforts. And we’ve discovered a bounty of resources from each other that we never knew existed. Special needs surfing on adaptive boards? WOW! Sure, our kids are all different, but this community has made a world of difference for us. We might yet be close to zip lining out, but we have the acceptance and support, and our kids have the experiences and friendships, that we all need to get across those wires.
Clearly the support mechanisms in place for Autistic families are far superior to those available to families impacted by Cerebral Palsy. So, with this in mind, Children’s Cerebral Palsy Movement (CCPM) warmly welcomes you to our community of likeminded families supporting each other, as these groups, both virtual and face-to-face are few and far between.
Starting this fall, CCPM will be offering professionally facilitated support groups in Orange County, CA for caregivers and for age-appropriate children. Also, academic tutoring (both online and in person) will be offered, as well as social groups and special activities/events. Please reach out to express your interest in joining our community.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. -Margaret Mead