Before I had Solly in my life, social media was a place to simply share photos, articles, humblebrag, and occasionally whine. Back then, even though I was working in digital marketing, I felt myself growing increasingly annoyed with all the oversharing on all platforms and was particularly ready to pull the plug on Facebook (hello, addiction!).
Then, I had a special needs child. Because of HIPPA, our doctors and therapists couldn’t connect me with other parents going through a similar journey. I connected with a few parents while in waiting rooms, but their child’s diagnosis wasn’t always the same, so I still had questions and craved advice from parents who had been there, done that. So, I started googling and realized how many special needs parents were making those kinds of connections on social media – mostly, Facebook, but also Instagram and Twitter. Over the past three years, I’ve started one support group and have followed and participated in several others. These groups not only help me discover new therapies, new medical treatments, and doctors that can help Solly, but they also give me a place to vent and share wins with people who go through similar ups and downs every day. Plus, I’ve even gotten to meet several local parents who I’ve since met up with in person! (These meet ups are refreshing – it’s always like reconnecting with a long-lost friend.)
A daily walk in the shoes of a special needs parent is certainly not an easy one. But I’ve found that with the right support group, life has gotten a little less scary and, in most cases, I’ve even felt empowered when making decisions for Solly.
If you’re new to a cerebral palsy or stroke diagnosis, or you’re simply looking for help with some of the alternative therapies, here’s a list of my go-to support groups on Facebook:
KISS Pediatric Stroke Support (I started this support group with two other stroke Mamas so we could not only connect parents with one another and share experiences, but so we could also follow what non-profits were doing to advance pediatric stroke awareness. We’ve grown to over 1,000 members and have parents from all over the world.)
Mom’s of Pediatric Stroke Survivors (If you’re local to the middle Tennessee area, be sure to join this one. It’s based in Nashville and gives lots of good resources on local therapies and doctors, plus the Mama who started it puts together a meet up every few months.)
CP Warriors, Mommies, Daddies, Grandparents, and Caregivers
2014 Cerebral Palsy Babies Support
Medical & Alternative Procedures
SPML – Selective Percutaneous Myofascial Lengthening
HBOT for Pediatric Neurological Conditions
Parents for HBOT
Stem Cell Therapy for Cerebral Palsy and Brain Injury (Parents Information)
Pediatric Cannabis for CP & Other NeuroMuscular Disorders
Pediatric Cannabis Therapy
Anat Baniel Method Parents/Caregivers
Know of any others I should add to the list? Feel free to send them my way!
As I mentioned above, I’ve also met some parents and gotten great info on other social media platforms. I’ll do my best to put together a post with my favorites, so if Facebook isn’t your thing, stay tuned!