.Last night, a reader asked if I ever think about what it would be like if we didn’t tell Brooke about her autism. She mentioned that her son doesn’t seem to be aware of his differences. This was my answer (edited slightly because I wrote it at midnight and well .. yeah.)I really don’t. I truly believe that our kids know and see a whole heck of a lot more than we may think they do. I see it every day as Brooke brings things up from long before she could communicate with us, and by God, it’s amazing to see the pieces coming together all these years later as she’s able, in her own way, to show me that she heard and absorbed and lived it all. All of it. Even when she was *seemingly* completely disengaged.And so now, when I see her *apparently* not getting something in the moment I just think, meh, we’ll talk about it when she brings it up. Maybe in a month, maybe in 5 years, but it’s all going in, getting stored in that beautiful mind until the day that she’s ready to process it.And I need to tell her that I know that. That I understand that, in her own way, she’s taking it all in. That I respect her. That I believe in her. For me, telling her who she is is part of how I do that.My kid is different. Very different. Beautifully, gorgeously, deliciously different, but different. Even if she may not appear to my limited senses to be aware of that, I don’t believe for a moment that she’s not. Or won’t be soon enough.Some things are harder for her. Connecting with people whose native language is different from hers is not easy. She struggles with things that come easily to the majority of her peers. She gets pulled out of class. She needs sensory breaks to keep going. She requires a lot of support just to get through a day. And I want her armed with why. I want her to know that it’s not some character flaw or some loss, lack, deficit, that it’s not because she’s broken or less-than or wrong.
I want her to know when she looks back that there was no shame, could not have possibly been shame because those who loved her were not ashamed, but proud to walk with her — proud to shout out loud, “It’s not just okay to be who you are; it’s perfect.”
I want her to know that she’s not alone, no matter how damned alone she might sometimes feel when she looks around and doesn’t see someone else like her in the room. I want her to know that there’s a community – a vibrant, beautiful, SUPPORTIVE community awaiting her. A community of people who can say, in their own ways, “We get it.” And I think that the key to the community is hashtag “autism” or Facebook or blog or twitter search “autism.” But without the word, there’s nothing to look for, no key to finding others who share some version of her wiring, who will understand her experience.
So no, I really don’t think about where we’d be without her knowing. It’s just not an option for me.
I wrote that very late last night. When I woke up this morning, there was an email notification in my inbox that Chavisory had liked a totally unrelated post of mine. The one about self-advocacy and the power of No. The WordPress email suggested that I go visit Chavisory’s blog and contained links to three random posts. One of them was this.
Among the scores of gems in this post (seriously; it’s a *must* read) was this ..
“There’s so much more of life to live than having to wrench the most basic facts about yourself out of the fabric of the universe.”
Accident? Methinks not.
Thank you to the reader who asked the question, and to Chavisory for the real answer.
Last night, as I wrote about why it’s so important to me to talk to Brooke about her autism, I also began to understand just what it means to me to Presume Competence, something that we hear a lot about but don’t always stop to define.You see, Brooke doesn’t yet *seem* to really grasp what autism is or what it means that she is autistic. Our “conversations” on the topic are still 99.9% one-sided and if she really understands them, she’s not yet able to communicate that to me. To me, presuming competence doesn’t mean assuming that she gets it. In fact, I think that would be a mistake.Here’s what it does mean to me …I believe that I am presuming competence by continuing to start the conversations and by continuing to look for ways to help her understand them. I believe I am presuming competence by continuing to tell her that autism must be a pretty cool thing because it’s part of her and she’s one of the coolest people I know. I believe I am presuming competence by telling her that, as challenging as autism can be for her, it is also the source of some pretty nifty gifts. I believe I am presuming competence by continuing to tell her that she is connected to others and by telling (and showing) her how much I respect those people to whom she is connected.But, again, it doesn’t mean assuming that she understands all of this right now.What I *am* assuming is that she’s taking it all in, absorbing it, holding onto it in her steel trap of a brain until the time comes when she’s amassed all the tools that she needs to peel back the stored layers and extract her truth. I’m presuming that even if she’s not yet ready to connect all the dots now, she *is* capable of learning, growing, evolving, tool-collecting and ultimately layer-peeling – in her time and in her way. That, to me, is what presuming competence is about.
Note: With Brooke’s permission, I snapped this photo of her dancing in front of the fire as I typed. She is, as always, a beautiful blur of unbridled possibility.
Brooke made a phone call last night. Like completely, totally, 100% independently. So independently that I didn’t even know she was doing it until I heard her say, “Hullo?” as soon as the phone starred started ringing on the other end and then, “Hullo?” again while it was still ringing and then, well, you get the idea but holy crap on toast, people, she MADE A PHONE CALL and the person that she chose to call was a FRIEND and yeah, the friend happens to be ten years older than her (which at ten is twice her age) but the connection of their autism and their shared view of the world and the number of things they both like and well, it all just trumps age and she was THRILLED that Brooke called and oh my God I still can’t get over this, my kid called a friend on the phone and the 59 seconds that they talked to each other before Brooke said, “I’m all done now, bye,” was just something to behold and all of this stuff that I’m always rambling on about – the autistic community awaiting our kids and the connection that autism can create and the way that the knowledge that others are out there provides an antidote to feelings of isolation – it was all there last night during the 59 seconds that my girl reached into the ether and made her very first phone call EVER to a young woman twice her age and halfway across the country who couldn’t possibly have been happier to take that call and, well, I’m trying to be profound here but really all I can say is, “Holy %?!$ my daughter made a phone call to a FRIEND!”
Oh, you guys, I think my heart might just explode. In what might be the most perfect post script ever written by the forces of the universe, this just happened ..A mom wrote to our local autism parent advocacy group to say that her daughter, an autistic third grader, is having trouble connecting with the girls in her school. She wrote to the group in hopes of finding other girls on the spectrum. When I asked Brooke if she might like to meet her, she said, “Yeah. I could be her Katie.”And with that, I reached out to the mom and explained that my daughter, a fifth grader a nearby school, would love to meet hers, and maybe even be her big sister. And then I cried.
This is how it starts. One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home..