i didn’t either


{image is a selfie of Brooke and me on the beach on Sunday, taken during our walk}

Yesterday, I wrote about a watershed conversation that I had had with Brooke over the weekend. One in which she declared that she likes being autistic. It was arguably the longest unscripted conversation that we’d ever had and truthfully, I think I was almost as giddy about that as I was about the content.

As the post made its way around, I read the comments in the various places in which it had landed. There were so many that I loved from fellow Autists cheering Brooke on, joining her in a chorus of self-acceptance, to parents sharing their own efforts to ensure their kids understand and accept who they are. And then there was this one, on the Thinking Person’s Guide to Autism:

Brooke wasn’t always so verbal, worth reading back entries. Jess never, ever forgets to celebrate who her kids are as people.

I adored it. All of it. The recognition of Brooke’s incredible progress. Of the fact that this is just a snapshot of where we are and that it lacks context. That it’s so, so important to understand from where we came in order to truly appreciate were we are. And the second sentence, well, that was just icing on the grateful Mama cake.

But it made me realize that parents would read that post without knowing Brooke, without knowing her struggle to speak our language and our family’s quest to create a new one that would allow us to meet her somewhere in the middle. They would read it without knowing how hard she’s worked for words like “What” and the far more recent acquisition, “Why.” And they might well read it and think, as I so often did (and still do, despite myself), “That’s a great story. And one to which I cannot and will never relate because my kid is light years away from a conversation like that.”

If you are that parent, I need you to know that I get it. That I really, really get it. That for years upon years I wrote about how I yearned for a conversation with my child. About how it terrified me that at six, she still didn’t respond to her name. About how her only words were those she’d just heard and parroted back in a meaning bending echo. About how half the time I could not for the life of me figure out what my girl was trying to tell me with her isolated sounds and frustrated shrieks. About how at five, without words, she would pull me across the room and put my hand on the thing that she wanted. About how, “Look, Mama” came for the first time at six. About how, “Why?” came in earnest at ten. About how I never, ever would have believed that someday I’d be walking with my girl, TALKING.

In January, I wrote the following. I went searching for it last night. Because I needed you to know.

There was one in particular who, long before she was a friend, was a hero. Whose daughters I began to cherish as my own, in whose stories I became wholly and deeply invested. And by whose urgent and insistent optimism I became transfixed.

Drama Mama wrote about Ms M not just with overwhelming love, but with reverence. She respected (and I’m only using past tense because I’m talking about her past writing) her. She reveled in her – not just in her accomplishments, but in HER. In who she was becoming and in who she was at the very moment at which she was inviting us into their story. She wrote about her struggles and she wrote about her victories over, around and through them. She wrote about her navigating friendships, handling summer camps, reaching out to others, performing on stage, demanding authenticity in a world that offered up far too much pretense for her comfort.

She wrote about her daughter doing things that were simply unimaginable for parents like me. And every single time she wrote a post, she told us to believe. She told us that we too, would be there someday, looking around in amazement and at our kids with wonder.

And after all these years, there’s something that I have to say. Come closer, I really don’t want to say this loudly.

I didn’t really believe her.

I’m going to let that sink in for a minute, because it’s not something that I’ve ever said out loud.

I didn’t really believe her.

You see, she would write about her conversations in the car with Ms M. About how they would analyze an interaction that had taken place earlier in the day. She would tell us how Ms M, so beautifully and poignantly self-aware, would tackle it from every angle, take it apart and meticulously put it back together again. She would describe how they would talk and talk and talk until Ms M said that she needed some time to not talk for a while.

And I would devour every word, starved as I was for faith that someday, my girl and I might … talk. And I would roll around in her stories and toss them up over my head and into the wind and then I’d watch the words come floating back to earth and I would try – I would try and try and try to believe. Because she implored us, her readers,  in everything she wrote to BELIEVE that it was possible.

But I didn’t.

Ms M was not my girl. My girl didn’t talk in the car. She barely talked. When she did her language was entirely scripted. We were light years from carrying on a conversation about … anything no less discussing the nuances of social discourse. If she was self-aware, I couldn’t see it. Cues that she needed time to decompress were physical not verbal. She screamed.

I was happy for Ms M, but she was not my girl. Autism is one word, but there is no one autism. Ms M didn’t have my girl’s kind of autism, I reasoned. She couldn’t. Not with all that she was doing and all that my girl was not. My girl would never be Ms M.

I reveled in her victories, I just didn’t believe that they could ever be Brooke’s.

And you know what? They weren’t. They won’t be. Brooke’s victories will be her own. Yours will be your own and your child’s will be theirs. But I’ll be damned if I’m not here now, writing about my kid, and knowing full well that some of you, no matter how much I implore you, don’t, won’t believe in the possibility of your child doing some of the things that Brooke is able to do. And I’m here to say that I get it.

Because when we see a kid doing things that are currently beyond our imagination for our own, we say, “But that’s not my kid.”

I can hear it in my head as I write …

Singing a solo in her school’s winter concert? Give me a break. That’s not my kid. My kid barely talks. Or doesn’t talk at all. My kid appears to be totally unaware, completely unengaged, totally disinterested. My kid doesn’t even respond to his name.

Neither did mine.

I want to stop to make sure that made it through.

Neither. Did. Mine.

If there’s one thing that this journey has taught me it’s that every individual progresses in their own way and on their timeline. I have no idea what you or your child might be doing in years to come. But neither can I, nor you, know what they are not — or will not –be capable of doing in the future.

I know my kid isn’t yours. And yours isn’t mine. But neither are they now who they will be in the future. None of us is.

Everyone’s successes will look different, but they will come. The only real limits on what’s possible are the ones we create, or at the very least, accept.

So join me, won’t you?




14 thoughts on “i didn’t either

  1. This is exactly one of the reasons that I love reading your blog so much. It’s also the reason why the posts so often leave me so hopefully teary (okay, the teary part is probably also because I’m pregnant and hormonal!). We’re still very much at the beginning of our journey since my daughter will just be turning four in a couple of weeks, but in so many ways when you write about the challenges Brooke has faced it reminds me of Mae and when I see your pictures it makes me so hopeful about what may be possible. I feel like finding your blog in the very beginning, in the first days after our diagnosis last year, is one of the very best things for me as a Mama, because so much of what was out there is… well… you know. And your posts. are honest and radiate hope and possibility… which is likely why I always stop when I see your status updates on Facebook!

    • It is a lifeline for so many…and you will be teary long after you are hormonal! She pulls on my heartstrings every single day.

  2. I believe. Cymbie is 6 now and in a very similar place. She can use words to ask for things she wants. Which she couldn’t do a year ago. Her language is primarily scripted or rehearsed answers. I long for the day we will have a conversation. I have to believe we will. I’ve seen the incredible progress in 3 years. I can’t imagine what the next 3 will bring. But I have hope. And I believe in her. And I tell her that every single day.

  3. The list is too long to mention each one, but I want to thank all of the ally and autistic bloggers out there for sharing your stories, for being vulnerable, for fighting through the trolls for other for the parents out there, for your fellow autistics, for the generation of autistics being raised right this moment. Because of all of you, from even before my sons dx the day before his third birthday, I was able to reframe my thoughts, see past the surface, celebrate and encourage, presume competence, and learn that my lil monkey is on his own timeline, and to stop worrying about all the things hes not yet able to do. To believe in that “miracle” treatment that so many search for, but that is simply love, acceptance, support, and most of all TIME. At 4 1/2 now hes a completely different kid than he was even just a year or two ago, and thanks to those of you a little further down the line, I can see the wide range of possibilities in what his bright future might look like.

  4. Dear Jess, I’ve been waiting for quite a long time to write this post. When it was Katie’s birthday I wrote a message whishing her all the best, because, you know, your kids and your family deserve it. At the end, I just thought I could wait a bit more, but I sent her good thoughts. The comments for your posts came to my mind more than once, but I waited, I’d like to have good news to share.

    The thing is, at the beginning of this year, I was looking around to find a topic for a PhD project. I knew I would like to talk about new media and identities, since I had studied that before, during my Master’s degree. However, I was not quite sure about my focus. I was until I found your blog and then all the other blogs that I could find through the connections that you have, blogs written by autistics, by supporters, by parents and so on. I saw how amazing it was and how it could change people’s perception about disability and inclusion – because it definitely changed my perception pretty quickly – not that I was a hater or something like that, but I had no idea about how great the voices out there were. And, you know, when you can admire a group of people then you have much more than inclusion.

    After seeing it all, I read and read about disabled identities and wrote a project about new media and disabled identities. A couple of days ago, I got a reply from the consortium that I had applied and I was accepted by them. It was the best news that I could receive this year. So, I’d like to thank you for your words, for the connections that I could find here -though I’ve been just a reader, and for changing and inspiring me – and many other people, I guess. I hope I can make a bit of difference with my project too. Anyway, my sincere thanks to you and other people who are here fighting the same fight (as camelynelayne pointed out)!

    Note: I know it’s a off-topic comment, but I’d like to share it with you.

  5. I needed this post so very much. My daughter just turned 5, and there are days I cry and cry because I am so upset. Not with her…with myself. I cry because I let my worry and anxiety take over. I worry that she will never be able to tell me how her day was. I worry that she will not find friends that are kind to her and understand her. I worry that the world will not see her for the truly special and awesome person that she is.

    She is so much like your daughter. Their looks are even eerily similar. Both beautiful brunettes with perfectly olive skin and big smiles. The language and “talking” consume my thought process. The funny thing is, she is so very happy. Happy just being herself, and happy to just BE. I can learn a lot from her!

    I pray and hope that one day she will look at me and say, “Mom…give it a rest…it’s ALL good!”

  6. Thank you, Jess. You made me a little weepy. It’s so hard, too, for us non-bloggers, to realize how far our kids have come already. It’s easy to get lost in how far they have to go. I really messed up the last couple years, and I fear he could have come farther had I been more consistent, more insistent. I’m trying to fix it, I’m trying to remind myself that the dire “window of opportunity” they stress is not the end of the world. He’s not my baby anymore but he’s still a very little boy and he’s beautiful and smart and I know we’ll get there. I loved the thing Brooke said about her remembering. That’s so similar to my H; he remembers everything, it startles us frequently when he calls up details from when he was a toddler. Thank you Jess, you are such a help and a comfort. Here’s my sweeto. Send us good thoughts. https://www.flickr.com/photos/jevn/13939714568/

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