It's been a bit of a surreal week.
I have so much to write about that I don't even know where to start, so I'll give you some coles notes.
1- On Thursday of this week, we were finally able to drop the "or something" from Sammie's pseudo-diagnosis. He has Autism. He is Autistic. The doctors told me. My answer: "Duh." I will write more on this later...
2- The process, despite having a completely predictable and happy end result, was horrible. Horrific. There are few things in life worse than watching your kiddo get treated like a lab rat…except, of course, being the kiddo who is being treated like a lab rat. Sammie was AMAZING through it all- that kid has an iron-will and is just so incredibly awesome that everyone he ran into fell in love with him. But it was not easy. Not for him, and not for us. I will write more on this later too…
3- On Friday night, 30 ish of our closest friends and family members came over for our "Sammie Is Autistic! Let's Have a Party" neurodiversity celebration. In our group were friends that we have known for over a decade. There were families who also have special kiddos of their own, and who are walking down similar paths. There were even a few special guests who have been like guide posts in this sometimes overwhelming journey. The love and celebration of Sam was the most amazing thing I have ever witnessed. I am moved to tears at the way his loved ones have accepted and uplifted him. And yes, I will write more on this later…
4- I took part in my first major online Autism Advocacy debate. For a long time I have been a lurker, feeling a little bit like an imposter since we didn't have a diagnosis for Sammie yet. But as I watched a self-proclaimed social-justice crusader tear apart the community that my son (and, vicariously, myself) now belongs to, I could no longer keep quiet. It was like a force inside me calling me to action. For the first time, I feel like I am involved in a social movement from the ground floor. I am part of a revolution in how people talk about, think about, and treat the Autistic community. I will not allow this world to mistreat my son. Oh yes, the mama bear claws came out. And, oh yes, I will write about this later. Probably next post. Cause, two days later, I'm still all riled up...
5- This thread connected me to an amazing group of self-advocates, many of whom I have been following from afar for quite some time. Through the past two days, I feel like I am finally "at home" in this Autism world. I have found those who think like me and who love my son for who he is. I have found those who are even better translators than I am. I have people to whom I can turn when I have questions. I have found people who aren't only on the group floor of the movement; they are the movement. These people have stood up and proudly said that they refuse to be discounted. They refuse to be rejected. They refuse to be ignored. They are proud of who they are and of what they have to offer the world. I am sure that I will write about this a lot. These people have joined Sammie in forming my community of Autistic muses….
6. And amazingly enough, these heroes think I am a hero. They think I am amazing. These people, who should be celebrated at every opportunity, celebrated me. In some ways, it seemed like they were even surprised that people like me existed.
And that's what I am going to write about tonight.
"I'm no heroine."
Ani Difranco, in all her wisdom, wrote these words many years ago about her struggles as a feminist.
"I'm no heroine
at least, not last time I checked
I'm too easy to roll over
I'm too easy to wreck
I just write about
what I should have done
I just sing
what I wish I could say
and hope somewhere
some woman hears my musicand it helps her through her day"
I never understood these words as a kid. I remember thinking to myself, "Of course you're a heroine! You are the voice of my generation!" I remember wondering if it was just false humility.
Now, 20 years later, I wonder if I don't kind of get what she was saying. Or, at the very least, her words have taken on a bit of a bigger meaning to me.
I'm no heroine. I am not a super parent, expert mama, mighty advocate doing extraordinary, amazing things. I am not special.
I'm just Sammie's mom.
He's the special one, trust me.
Loving this kid for who he is is quite possibly the most natural and easy thing in the world.
Accepting that he is different, not less, and celebrating what makes him unique feels like common sense.
Assuming that there is nothing he can no do is fundamental to the core of my being.
Believing in the language of his body, reading every movement, seeking the meaning in every cry, is part of my essence.
I am his mother.
Isn't that what this gig is supposed to be about?
How have we come to be so disconnected from each other as to fear the unknown and to rally against those who are different, coming at them in hoards like predators circling their prey?
Is this what social skills look like?
How have we come to reject people based on their difference- even those differences that present as deficits- instead of embracing them for who they are and what they can do?
Is this what empathy looks like?
How have we resorted to needing infantile labels to describe and categorize everyone based on a subset of personality differences, codifying these into manuals and replacing names with numbers?
Is this what Executive Function looks like?
How have we come to reject jumping, spinning, flapping or rocking as being completely unusual and unacceptable patterns of behaviour, but seem to elevate fixations on electronic devices, televisions, alcohol, and so on?
Is this what self-regulation looks like?
How have we reached the stage where we can look into the faces of children and see nothing but impairments instead of beauty and mystery?
Is this what facial recognition looks like?
How have we reached the place where we can arrogantly claim authority over another person's neurology, another person's identity?
Is that really what being allistic should be?
The sad fact of the matter is that I am completely lost right now. Because there is absolutely nothing that I have done in the past week that should fall outside the parameters of what loving, engaged, connected parenting should look like. I accepted my son. I accepted his peers. I listened to their stories. I validated their right to exist. And I promised to treat my Autistic child the way that I would treat his sister or any other child in my life: with compassion, caring, integrity and respect.
Love. It really isn't complicated.
And it shouldn't be inversely proportional to the amount of medical acronyms that proceed your name.
I am not a heroine. At least I hope not. Instead, I hope that I am pioneer. That there will be hundreds, thousands even, who come after me, and out do me. I hope that, one day, the way I parent my son will be seen as outdated and archaic- prehistoric attempts at acceptance. I hope I am a beginning…not an end.
I am no heroine. I'm just writing a story. The real heroes are the ones who are living it.