Ever have to start an essay with “What I did last summer was…..”? Goodness, I hope so, otherwise I may have to change my title!
When I approached people at work this year about changing a decidedly abbreviated Autism Awareness Month movement to a very robust and enthusiastic Autism Acceptance Month movement, I wasn’t really certain anyone would want to listen. I mean, plenty of people have loads of ideas, don’t they? I needed to be sure I was well armed with better groups to align with, more current information.
And when I walked in with a month worth of social media ideas and community outreach opportunities, I was heard.
And for the first time in a very very long time, I feel as though what I say- what WE say- actually means something. I feel as though we could in fact help our community as a whole begin to change the narrative from one of fear-mongering to one of strength, inclusion, unity.
So… it’s nearly the end of the month. I’ve photographed perhaps a hundred or so people (I truly haven’t counted) who have heard what I’m saying about understanding and accepting the autistic community. I’ve heard their stories and shared mine, including my own personal move into self-identification. This movement has, to my mind, done precisely what it set out to do: change the perceptions held by the non-autistic community about autism, and provide them new information which may help them be more open to inclusion.
And just because April is nearly done does not mean that my our work is over. No way. Inclusion, acceptance, understanding, support, love, they are needed twelve months of the year. Our work has only just begun, lovies. Are you ready?
I’ve had several people ask me about telling kids about their diagnosis. I’ll admit, I may not be the right person to ask. I’m so totally matter-of-fact about things, that in our house it goes something like this:
“So, little dude, you’re autistic.”
“A-u-t-i-s-t-i-c. Autistic. It means that your brain takes in a LOT of information and processes it (like a computer does). This is true for everyone, but your brain goes about it a little differently. It also means you might have difficulty with things that are too loud or too bright or involve too many people. And it also means that you may learn a LOT about one particular subject and then teach us all about it. Cool, eh?”
The other day, Speedy was reading the back of my wine glass that we received from David’s Refuge during a respite weekend. “Children with special needs aren’t sent to special parents, they make parents special.” He looked quizzically at me. “Do you know what it means when they say ‘children with special needs’?” He shakes his head no. Then he stops and smiles. “Is it because of my autism?” “Bingo, kid. You got that right.”
So here’s my thought on, well, pretty much everything. Kids pick up EVERYTHING. They hear and see all of it, especially when we think they can’t or don’t. When kids hear the adults in their life talking about their strengths and their abilities, and talking matter-of-factly about the benefits of being autistic, they have a more positive view of themselves than the kids who grow up hearing only about the deficits, the struggle, the “I wish he was never born this way” moments. Don’t get me wrong- we do have the struggles. We do have the nights when I dissolve into a weepy puddle in my husband’s arms- or vice versa- because we just had never signed on for how much work this would be. We do have to have deficit-based conversations at times (when our children are not in the building) because some access to services requires that conversation take place. I end most of our family dinners with my head in my hands.
I don’t want our readers to think I’m all sunshine and roses. No, lovies. I’m coffee and wine. I’m fried cheese and beer. I’m hanging on to the edge of a cliff by my chewed fingernails. I move through emotions so fast it would make your head spin, a fact which has often confused my acquaintances. But it’s all Coping Strategy 101. There is no manual for my children, which is why I write- so that you may have something to go by. A weird combination of Instructional Manual, Coffee Table Book, Bathroom Reader and Comic Strip.
I recently attended a conference where the presenter said “If you’re considering writing a book, don’t.”
I think it’s safe to say that I’ve always advocated for what I want and need, when I know what that is. My parents did a bang-up job, whether they knew it, of teaching me to ask for what I want and need.
In high school, I figured out very quickly how to get close to teachers and get things such as slightly better grades (offering to do all the photocopying goes a long way) and even a cup of coffee from the teachers’ lounge during my junior year. Hey- I never said I used my powers for good!
Honestly, I’m not really sure what my parents did to create this person that I am. I seldom make much sense to myself. On the outside, I may appear social and easy going, and there are times when I truly feel that way. But the inside may feel totally different. And then other days, I feel giddy and child-like, but must maintain a professional exterior:
I think I’ve come a long way in the last few years. I remember a conversation that I had with a friend and some of her friends (I really didn’t know them well, and it’s possible that I did not make the best impression). We were talking about what to do when our kids need services at school but the school isn’t on board. I stared in amazement at the people around me who were all saying they didn’t think they could insist on what their kids needed. Um…what’s that now? As I listened to them say these things, I saw something very interesting happen with their body language. They physically became smaller. Their bodies, their voices, everything about them shrank.
My reaction was to get bigger, louder, more powerful. “These are your children. If you don’t advocate for them, who will?”
“No but really! Your job here is to go to the school district and demand for the services that your child needs to succeed!”
I may have lost them at that point, which is why I say I’ve come a long way in the last few years. In part because I’ve been working directly with families and want to be professional because I love what I do! And in part because I’ve learned more about who I am through raising the boys. I’ve learned how better to connect with people to help them figure out what they need, because I’m simultaneously doing that at home.
I think I was trying to write about how to teach our kids to be self-advocates, and it may seem that I’ve wandered away from that path. I believe that it’s a two-step process.
We must learn to advocate for our needs as well as those of our children. We should learn to recognize what is truly needed and not be afraid to ask for it.
Through that, and through teaching our children that we respect that their bodies and their needs are truly theirs, we will have done what we are here to do.
My husband and I watch the show Speechless, a sitcom about a family who works together (and sometimes work in spite of one another) to get what they need. One of the kids in the show (J.J.) has cerebral palsy, and the mum (Maya) is a staunch advocate who fights for (and usually gets) what J.J. needs. We love this show because it does not steer away from using humor as well as talking about some really serious issues faced by those with disabilities.
In the most recent episode, Maya helps a group of other parents by teaching them to demand what they need. For the first time in a long time, she feels that she’s really doing something incredible by helping these parents find their voice. It goes sideways when the district realizes that her son is getting way more services than they’d ever provide…(watch the video clip below)
SPOILER: In the end, she works with the principal to find cost-saving solutions to meet everyone’s needs.
Just for fun, because he’s awesome, here is a video of Zach Anner sharing his views on the show:
On a side note, did you know that Micah Fowler, who plays J.J. DiMeo on the show, actually has cerebral palsy? In a bold move, Hollywood actually cast an actor into the part he was born to play. It doesn’t happen often, and it’s reason number 1 why this gal doesn’t watch shows about autism (because despite the fact that 1% of the world’s population is autistic, Hollywood can’t seem to turn up an autistic actor).
So. To sum up: Ask for what you want, even if you think you won’t get it. Teach your kids that their bodies and their thoughts and feelings belong to them. You won’t be sorry at the result. I promise.