About 9 years ago when A2 was 3 years old, he attended a social skills group with a speech therapist and 3 other minimally verbal children. A2 was by far and away the most pleasant and social of the 4 kids in the group and at that point did not have an Autism diagnosis. I didn’t know WHAT was happening with him for sure. I sat in that lobby week after week wondering what A2 could possibly be getting out of the group given none of the children had any functional verbal language and a great majority of the time the adults were wrangling to keep the kids all in one spot. After the final session, I sighed at the speech therapist and asked her what she thought was going on with my beautiful boy. She asked me if I had ever heard of the book Schuyler’s Monster by Robert Rummel Hudson. I had not. It is a memoir written by a father about his wordless daughter. A2 and I left the speech session and immediately went to the library to find it. I suppose I would have been reading more about parent perspectives of young children with disabilities had a known my child had a disability. But he was 3. He had delays. A gross motor delay, a fine motor delay, a speech delay. He flapped. But he also looked at me and smiled, knew his name and cuddled. Other than the cache of bewildered parents who sat in lobbies at therapies, I had no connections to others going through similar circumstances. As an action oriented person, I didn’t know I needed to have those connections.
That is until I read Schuyler’s Monster.
In some ways, I feel like that is where my story begins. It started as an easy read because Rob is poignant, funny and his words wash over the pages and get right into your brain. And. Then. To put it simply…I was knocked on my ass. He was telling my story. He was me. And Schulyer was almost exactly A2. Right down to the personality. I had to set time aside to read when I knew I didn’t have to be “on” because I wasn’t sure how what I would read would affect me for the rest of the day. Schuyler has a rare genetic disorder called Bilateral Perisylvian Polymicrogyria. I called A2’s neurogeneticist at the Cleveland Clinic and insisted he himself go back and read A2’s baseline MRI and not rely on the radiologists report. He humored me and alas, A2 and Schuyler did not hold this in common. I finished the book and felt like I was underwater. What was I going to do without Rob, Julie and Schuyler? I felt connected to something and yet I had never felt so alone in my whole life all because a piece of cardboard filled with paper and a beautiful little girl on the front told me life might not be what I think it is. I was not an avid reader of blogs and at that point was not on social media. I found his blog Fighting Monsters with Rubber Swords and reconnected with his words. Soon, I found another blog that spoke to me much in the same way written by a teacher who had an autistic child called Flappiness Is. At this point, we had an autism diagnosis and I was in the throes of learning to advocate for my child in ways that rocked my world. Leigh was there to say the things I couldn’t say. Then there was another (which is no longer around) that made me laugh about our situation when I needed to laugh about it.
I now had a community and resources I could access whenever I needed it.
I am an accidental blogger. I wrote 3 posts back in 2010 and when I realized I really had nothing to say, I was done. It wasn’t my time to talk. I don’t know if it is really my time to talk now, yet here I am. Instead of following 3 blogs, I follow dozens and all for different reasons. I have met the most amazing folks along the way because of it including the now very grown up, very kind and very inspiring Schuyler. And she seems to be exactly the person I hoped she would grow up to be when I met her as a little girl as typeset words sitting on my couch 9 years ago.
There is no need to be alone if you cannot find “your people” in your community. I never dreamed that some of my closest confidants are people I have never met or only briefly met in person. This list is not exhaustive…..and most categories will overlap, but my resource list of favorite blogs/social media folks you might want to check out (note also most blog links will be the same name on Facebook):
PERSPECTIVES FROM THE SPECTRUM
MEMES/HUMOR/KEEPING IT REAL
ALL THE REST