2017 Disability Day of Mourning & Raising a Strong Advocate

 Today, on the 2017 Disability Day of Mourning, I am thinking about how to guide G toward the path of advocating for the rights of the disabled. We are all about Autistic pride around here; there is no doubt that being autistic is a grand way to be. We cannot deny the challenges, though, and one of my gravest responsibilities is to teach G to recognize his needs and request support.

At 13, and being a sensitive guy, G is a bit young for the full story of why we mourn.  To be honest,  this is a tough subject to broach at any age, but we have to begin somewhere.

So we begin where we are. By stating categorically every single day that he is valued and loved. By making clear that those who claim to love someone would never harm them. By reminding him that he belongs to himself above all, that he has the final say in what happens to his body, by teaching him that we always begin with "No!", but have a right to physically defend ourselves if need be. We set a tone through our conversations when these stories make the news.

This is the hardest part of special needs parenting for me, but I know it has to be done. There will likely come a day when he wants or needs to move through the world without me, and I have to make sure he is equipped to do that. I don't have all of the answers, and sometimes I have to tell him so.

What I do have, is the conviction that he has the right to live in the world just as he is, and a desire to help him do just that.

On Blogging and Privacy

I've been writing online for over a decade. When C was a little guy, I was searching for a "Motherhood" necklace and instead wound up finding DaMomma's blog. I'm sure it helped that I'd stumbled onto the page of a really gifted writer, but in that one instant, I was hooked. Far away from the village of women I'd grown up with, I felt like I'd found a community that I didn't have in real life.

Back in those dark ages of social media, the custom was to comment regularly on the blogs you enjoyed, preferably with a link back to your own web home. It gave us a sense of getting to know each other - kind of like sharing diaries back in elementary school. Feeling like I needed a calling card of my own, I started a blog describing my own experience as a working mom and Martha Stewart wannabe.

That blog (currently private, so no link) saw me through quite a few pivotal life moments. There was the struggle of navigating childcare and surviving working mom guilt. I wrote about the helplessness of living 600 miles away when my dad had a heart attack. I blogged and cried my way through my son's Autism diagnosis, how the school system mistreated him and our decision to teach him at home, and found my way to Autism pride and advocacy through the screen of my laptop.

I set privacy parameters in place from the outset. I used a pen name, and blog names for Chico and my husband, Q. I never gave details about C's struggles or named his teachers or schools. I sometimes wished I could, because reading those things had been helpful to me, but I just never arrived at a point where I felt like that was okay for my family.

Which brings me to today. I started Every Day a Rainbow because after more than a year away from blogging, I missed it. I wanted to share our experience with homeschooling a child with special needs to encourage other families. I wanted to be the one voice that assures a parent who's wondering "Could we?..." by showing that we are. I want to make people aware that restraint and seclusion are being used in classrooms every day, and it's unacceptable. Mostly, I wanted to share that this life we have, one that includes Autism, is a joyful one. We have challenges, but there is joy in every day that we have with our remarkable young man.

That the story is mostly his is not lost on me. If I share only part of what's happening in our world, it's because his part of the story is not  mine to tell. It wasn't when he was two (the year I started blogging), and  it becomes less so every year. More than my desire to encourage others is my obligation to protect my son. I hope that he'd find nothing in my online pages to protest, but if he does I'd remove it in an instant. For now I write with care, always truthful, but never obliged to include what is not mine to share.