Image is a photo of a tree. ‘Cause nature.
Many of you have asked me to write about how we are handling puberty with Brooke.
Autism, Puberty and Respect (Part One) was about why I won’t.
Some time ago, Brooke’s older sister, Katie and I came to an agreement about what I would write about her here. If I don’t have the chance to ask her permission first, I am to trust my gut about what would embarrass her and what wouldn’t and, obviously, not write anything that I don’t think she would want me to share. My gut answer comes from one question … “If it were me, and I were [thirteen], would I want my mom telling this story to everyone I know?” The answer is, most often, no.
Brooke’s autism does not negate her right to me asking the exact same question of myself every time I sit down to write about her. My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump her right to privacy. Helping to guide others cannot come at the cost of her dignity.
If she chooses someday to talk about any or all of it, so be it, but she’s not in a position to make an informed decision yet. So it’s up to me to ask the question, “If it were me, and I were [eleven], would I want my mom telling this story to everyone I know?”
The answer, my friends, is no.
Since writing that post, I’ve remained silent on the topic. Unless Brooke tells me one day that she’s comfortable talking about it, that will not change. You will not hear the specifics of her experience from me. That story simply is not, and will never be, mine to tell.
But there’s something that I do need to say about the topic in general. Something that isn’t about her. Something that has been eating away at me for months.
I try hard not to lecture here. I’m a mom, just like many, if not most, of you reading this. I have no expertise that you don’t have, no degrees or schooling or letters after my name that give me any more credibility than anyone else.
Once in a very rare while, there’s something that I know with such certainty that I feel compelled to drag out my soapbox and shout it to the sky. This is one of those times. So please indulge me. I know this. I promise.
Talk to your kids about puberty.
Yes, I’m talking to you. You, who think they can’t possibly get it. Please don’t stop reading. This isn’t for People Who Aren’t You. This is for You.
Whether your children are verbal or nonspeaking, appear to understand words or don’t. Whether they are in a mainstream classroom with little support or are in a one to one program and not yet toileting independently at ten.
I’m asking you to talk to them.
All that writing I do about presuming competence? Well, this is what it means.
It means trusting that they are hearing you. That on some level, your words are sinking in, to be processed when the tools are available, when the time is right. It means believing that they are taking in far more than they may be able to affirm for you in real time. It means trusting that they will, at some point and on some level, understand.
In January, I wrote the following. It might not seem entirely relevant. I promise, it is.
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.
Brooke consistently astounds me with what she remembers from long before I thought we had the ability to understand one another. Do you remember the story about the Christmas of 2010? The one I had the audacity to call “In so many ways, Brooke’s First Christmas,” just because it was the first time that she’d participated in the festivities in a way that I, with my rigid, inflexible, neurotypical perception, recognized as participation. God, I hated that story. The way that I gloated over her “finally getting it.” Until I was the one who finally got it.
I’ve been over the moon that my girl is GETTING it, I wrote.
That she’s been a true participant in the process, in the traditions; in Christmas. It’s a whole new world for us.
But the other night there was a hint at something. Something big. Something that knocked me on the head and reminded me that I have been looking at my girl through MY lens. And forgetting to look at the world through HERS. And that if I had been looking through hers, I wouldn’t have been able to forget that there’s always, ALWAYS, a whole lot more than what I THINK I see.
Come closer, my friends. This is important.
We were in the basement, hauling up the last of the Christmas decorations. I was covered in red and green as I tried to make the most of my two arms in an attempt to minimize trips. I walked slowly toward the steps – a wreath slung across one shoulder and a stack of table linens on the other. Both hands were full – one with the kitchen Santa, the other with his cookie baking wife, Mrs Claus. A basket of silk ribbon was precariously balanced in the crook of my left arm.
Brooke stood in front of the shelves, holding another Santa by his hat. “C’mon, baby,” I yelled back. “Let’s make a trip up. You carry your Santa.”
She didn’t move.
“Brooke, honey,” I said, “This stuff is getting heavy. I’m going to drop it upstairs, OK?”
She didn’t move. Instead she said, “Mom, where’s my tree?”
The wreath was beginning to dig into my shoulder. “What tree, honey?” I asked.
“My tree,” she said. “That goes in my room. With Zoe on it. And Big Bird. And Elmo. But NO Cookie Monster. Mom, where’s my tree?”
Years ago, I bought the girls their own little tabletop trees. While Katie set about decorating hers, Brooke (I thought) barely took notice of hers. Katie took her time choosing garland and tinsel, then took great care in picking exactly the right ornaments. For weeks on end we wandered through the aisles of ANY store that sold decorations. She was determined to find just the right ones.
Brooke simply didn’t seem to care. I showed her ornament after ornament trying to solicit an opinion – or at least a reaction – but none was forthcoming. Finally, I stopped asking and chose them for her. I found adorable beaded garland and strung it around the colored lights. I searched high and low for ornaments that I thought she’d like to look at. I found Sesame Street and Dora, even Blue’s Clues. And when it was finished, I put it into her room, just like her big sister’s.
I carefully laid the wreath on the floor. I set the ribbons down along with Mr and Mrs Claus. I walked over to my girl and pointed to where her tree was sitting on the shelf, hidden behind two others. “Do you want to bring your tree upstairs, Brooke?” I asked.
“I do,” she said.
She walked next to me as I carried the small tree up two flights of stairs. She chose a spot for it and together, we set it down in her room, on her dresser, right where it had always been. And right where she’d known it belonged.
Later that night we lit her tree before bed. As we snuggled together in the warm glow of the lights, it hit me.
Brooke knew all along. She GOT it all along. For the millionth time, I was the one who didn’t get it at all.
How many stories like this one do we all have? The Aha moments when we see, in some way, shape or form that our kids were THERE when we thought they weren’t. (Psst, they’re ALWAYS there.) ENGAGED when we, so sure of our own perceptions, thought that they weren’t taking it in, whatever it was. In how many ways have our kids, time and again, proven us wrong?
So when you dismiss the idea that your kid could possibly take in and in some way process information about puberty, well, think again. It may not be as simple as reading What’s Happening To Me? or sitting down to chat about the Birds and the Bees. But there is a way. Some way. And finding it matters.
Kids, by definition, don’t have an awful lot of control of their worlds. Kids with challenges communicating tend to have even less. Kids without any reliable form of communication have almost none.
There is nothing more disconcerting, terrifying even, than your body changing without warning. Than hormones toying with your moods and jarring your emotional world without explanation. Than hair growing where it wasn’t before and parts of your body suddenly smelling that aren’t supposed to smell. Than urges to do things that make no sense, penises suddenly having lives of their own and, for the love 0f God, bleeding from your vagina without knowing why.
These things, without context and without explanation, are confusing and terrifying. Put them all together and it’s not really unreasonable to think you might be dying.
So talk to your kids about puberty.
If you don’t think they’ll understand words, draw pictures (or find them – there are tons of resources online). If you don’t think they’ll look at the pictures, find videos (if you can’t find them elsewhere, check your public library). If you’re concerned about short attention spans or low tolerance for a lot of words, read half a page of a book to them every night at bedtime until you get through at least the highlights. Once it becomes an expected routine, you might just be able to read the whole book, even if it’s half a page — or one paragraph — at a time.
I’m not promising this is easy. You may have to do some work to make it accessible. You will definitely have to get over any of your own discomfort. It is what it is, guys. Don’t let your squeamishness or insecurity stop you from doing it. It matters too much.
Get creative. Use favorite cartoon characters. Use familiar scripts, favorite movies, favorite books. Revamp Potty Training books. Find a way to do it. Talk to your kids’ teachers and aides and school nurses. Brainstorm ways to give them the information that they need.
You see, this isn’t something that will wait until our kids are “developmentally” ready to handle it. When their bodies are ready, they will have to “handle” it one way or another. They deserve to know what the hell is happening to them.
Above, I’d written, “Brooke’s autism does not negate her right to me asking the exact same question of myself every time I sit down to write about her. My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump her right to privacy. Helping to guide others cannot come at the cost of her dignity.”
Neither does her autism negate her right to know what’s happening to her body and why. In fact, in some ways, it makes it even more important for her to understand. And, easy or not, it’s my job to figure out how to make that happen.