the conversation revisited

Just before bed last night, I exchanged texts with a friend who has a son Brooke’s age who is on the spectrum. I’ve met her in person once. She was telling me that she had taken her son to see Dolphin Tale and was trying to convince me that I needed to go see it too.

Nice try, I told her, but this Mama does not need help initiating a good cry. She pushed; I resisted; we laughed. She told me that her son had sat through the entire two hours of the movie – something we all know can be an incredible challenge for our kiddos. So far, Brooke has done that exactly once.

But her bigger news was yet to come. The rest of the conversation went like this:

K made a friend.

What???? That’s AWESOME!

Yup. Kid just like him. Row behind us.

That.

Is.

Awesome.

Mom seemed sad and lost. God. I know that look. We exchanged numbers. She needs a village.

That’s even more awesome. You’ll be her village.

Huge.

And with that, a connection was made. A mom who was feeling alone will soon find out just how many of us are out here, walking this path together. And if her journey is anything like so many of ours, that knowledge will change her life.

This road is not easy. It’s isolating. It’s frightening. At times it’s unbearably sad. But so too, there are gifts to be found when we are able to share the moments of sweet victory with those who understand. When we can say, “My kid made it through a movie” or even better, “He found a friend” and someone on the other end of the line knows – truly KNOWS what that means, we are lifted.

By gathering together we have been able to affect change that we never could have alone. We’ve enacted laws to protect our children; we’ve fought discrimination at every level; we’ve changed the direction of scientific study; we’ve created programs to institutionalize inclusive practices in our schools and our churches and our communities, ending the practice of automatically institutionalizing our children. Together, we have made the world aware that our babies (yes, whether they are three or thirty they are our babies) are – in the words of the formidable Eustacia Cutler, “different, not less.”

Yes, this road is hard, but together, we move the obstacles as we go. And best of all, we know as we do that we have made the path easier for those who come along behind. And heaven knows, until we figure this damn thing out, they’re going to keep coming.

This community has meant everything to me. Without it, I would not have found my voice. Without it, I would not have written to the president, nor found myself headed to the White House to talk about our children. Without it, I would not wake up every morning knowing that I am not alone.

But this is not about me. Or Luau. Or my friend whose son sat through the movie. It’s not even about the other mom who was still wearing that damn cloak. It’s not about any of us. It’s about our kids. And they, far more than we, deserve THEIR village.

You think WE feel isolated? How about our kids?

I am terrified – abjectly terrified – about the future that Brooke faces as an adolescent, a teen, a young woman. I watch Katie struggle with all the typical drama of tween angst. I remember back to those days – feeling awkward and gawky, my body beginning to change in ways I didn’t really understand. I remember being teased for being as little as I was – I made a convenient arm rest for an obnoxious kid at recess. God, I hated the arm rest routine. And I think about that now. I think about how absurdly benign that was, relative to – well, THIS. But in my little world, it was something.

In Brooke’s world, it might be everything. These kids face an entirely different reality. They don’t fit the mold. They’re different. They’re odd. They say things that don’t make sense. They stand out at every turn. They are richly layered, incredible human beings who do. not. fit. in.

Enter the internet. In the wrong hands, a tool for bullying as persistent as the 24 hour news cycle. The kid who thought it was funny to use me as an arm rest at recess every day? Give that kid the anonymity of a screen and a keyboard and see where it goes. Give him some actual fodder – a kid who scripts movies at lunch, a boy who flaps his hands when he gets excited, a girl who hums in a nonstop verbal stim all day – and see what happens.

These kids will need to know, as they walk a path on which they do not see another soul, that they are not alone. That there are kids JUST LIKE THEM out there who walk similar paths every day. Kids who have felt the same way that they do. Teenagers who have found their niche. College students who, once out of high school blossomed. Adults who followed a different path – who found that what was once was called their obsessive interest is now referred to as their specialty – their passion. People who grew up feeling desperately different and found out that they are part of a community of people who did too.

I want that for my child. I want her to have a place to turn, a friend to text before bed. I want HER to say, “I sat through a two-hour movie!” and that friend to say, “Go you,; I know how hard that is. Why do they have to make the sound so damn loud? Ugh!” I want that simple recognition that means so much to me – for her.

I want her to advocate for herself if she’s able. I want HER to enact laws and fight discrimination. I want HER to change the direction of scientific study, to create BETTER programs to institutionalize inclusive practices in our schools and our churches and our communities, to put the final nails in the coffin of assumed institutionalization. I want HER to make the world aware that SHE – and so many like her – are different, but never, ever less. I want her to have a community that allows her to do all that – and so much more that I don’t have the imagination to conjure – if she so chooses. That’s an important detail of course – if she so chooses. But I want it to be a choice.

So we work every day to give her the tools to be able to make that choice. Language – above all she needs some kind of language, some means to communicate what she needs and wants and thinks and feels, who she is. An understanding of the things that elude her naturally – social construct, pragmatics, expectation, interaction, control. And community.

My girl will need her village.

And so, again last night, I tried. I danced around the conversation. The Autism Walk is this weekend. The word will be everywhere.

“Baby, do you know that we’re going to the Autism Walk on Sunday?”

“We are?”

“Yup, we are. And did you know that Grammy and Grandpa DD are coming too?”

“Hooray!”

“I thought you’d like that!”

“Is Drama coming too?”

“No, baby, Drama lives far away.”

“Is Miss M coming too?” (Miss M is Drama’s daughter)

“No, sweetie, Drama and Miss M live too far away to come.”

“Is Roxie coming too?” (Roxie is Drama’s other daughter)

“No, honey. Drama and Miss M and Roxie all live too far away.”

“They’re not coming.”

“That’s right, baby. We’ll see them a different time, OK?”

“OK”

“So honey, do you remember Mama telling you that you have autism?”

“Yeah.”

“Well, when we go to the autism walk this weekend there will be LOTS of other kids who have it too.”

“Is Drama coming too?”

She laughs. It’s a game now.

I tickle her as I say, “No, ya silly, Drama’s not coming too.”

She giggles. God, that sweet laugh could light a thousand suns.

I nuzzle into the top of her head and turn out the light.

We’ll talk about it again.

And again.

It will eventually make sense.

It will eventually lead her to HER village.

She breaks the comfortable silence.

“Knock Knock!”

“Who’s there?”

“Drama!”

Drama who?

“Is Drama coming too?”

Yes, we’ll eventually put the pieces together.

In the meantime, we’ve got some laughing to do.

Ed note:

To read more on this topic, please click HERE to visit our similar conversation last year. 

To support our Autism Walk please, please, please click HERE

To read Stephen Shore’s tip for disclosing an autism diagnosis to your chid, please click HERE.

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17 thoughts on “the conversation revisited

  1. It does take a village, my love! You’re doing all the right things in all the right ways. We’ll see you at the walk and we thank goodness we can be a part of that village.

    Love you,
    Mom

  2. Every day I am grateful to have found my village, which includes you and the wonderful autism mamas I’ve met along the way (virtually and in person). Developing that village for my kids – all three of them – is so important. And scary. And…overwhelmingly necessary. Thank you.

  3. Yay! A friend! My son found his first true friend less than a month ago. It is amazing how much that has made his life better/easier. Yes, he only sees her at school right now because his school is an hour away. His friend is in a very unique living situation, so I am unsure how easy it would be to get them together outside of school. But, he is happy every week day, and anxious every weekend to get back to monday. A.M.A.Z.I.N.G.

  4. Autism everywhere. It certainly will be. Our brood will be there too, walking, observing, connecting, consolidating. I’m hoping for great weather and that this year they’ll think to put the speakers that amplify the speaker on stage’s voice OUTSIDE. Nearly lost all of our marbles last year in the booths area with the noise. Have a great day, Jess.

  5. I have had many proud moments in my life.

    None prouder than becoming Miss Brooke’s knock-knock joke.

    This is the thing – maybe she did or didn’t understand completely about the walk. But she understands the people who love and “get” her.

    We’ll be on the walk with her, in spirit.

    Uh, maybe you might want to explain that one to her a little later.
    xo

  6. Thankfully, we have you as one of the Village Leaders!! You lead the way beautifully… thanks for all you do for our kids and for us…. Have a great time at the walk!

  7. I love when you post your convo’s with Brooke. Well, with both girls, really. They sound so much like so many that I’ve had with Cameron. This is the only place I hear the same give-and-take and it’s comforting to me.

    I love this place, too. I’m a different person b/c of it. Very grateful.

  8. If you want to see “Dolphin Tale” in a sensory friendly environment, AMC and the Autism Society of America offer a sensory friendly screening tomorrow, OCTOBER 1, at 10:00AM at select theaters nationwide. Check for a theater near you at: http://www.amctheatres.com/SFF/ Rest assured that for the price of admission, you (or your child) can stim to your heart’s content, you can change theater seats at will, the lights are dim but not dark, the sound is not deafening, and, most importantly, Silence is NOT Golden.

  9. in this village you are one of the tribal elders – leading our community and helping us unite. I continue to be so grateful for your diary. Best of luck at the walk this weekend.

  10. Dear Village
    I’d like to thank you for all you have done. As the husband of one of your villagers and the woman at the movie theater talked about in the above story, I can tell you first hand how much your sisterhood has helped my wife. You haven’t just helped her though. You havent just helped my child either. You have helped every single child who is affected by autism. Helped every parent who is lost and feels hidden in the shadows of isolation. You have lit a bright light in my wife that now acts as a beacon to every one she sees who’s parent belongs in the village. Welcomed with open arms….open hearts and love. For you are the reasons laws are past….children like mine have rights….and mothers at movie theaters meet friends for life. And for this i salute you.

  11. hi jess- love reading your daily blog posts! it reminds me that i am not alone! i feel like we have so much in common. hard to find these days with other pals of mine!!! hopefully we’ll get to meet one of these days! my son, mason would absolutely have a blast with your girls! let me know if you are ever in the denver area! you and your family continue to be my inspiration!

    julie

  12. Wonderful post. Thanks for sharing! My son is 14 and recently diagnosed with aspergers and has struggled with it. I am doing an Autism Speaks walk next week and have asked him to come. He used to go with me to walks for Alzheimer’s but it has been a few years. I am hoping since he has previous experience with walks he will be more comfortable with the idea of the walk at least. He said he is going but I am expecting a few conversations between now and then. Will be interesting to see if he actually goes. I really hope he does. I think it will be a big step in acceptance.

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