the people on the screen

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{image is a snapshot of the video of Brooke’s second birthday party. I am holding her and she is leaning on my shoulder.}

Over the past couple of months, Brooke has been watching the video of her second birthday party. A lot.

It’s odd watching it. Seeing those people on the screen who know so little.

Every time we watch it, I see something I hadn’t noticed before. A couple smiles at each other over by the cake as their kids, 5 and 8, ask if it’s time to sing yet. The kids are now in high school and the couple? Well, they divorced three years ago and he’s soon to remarry.

I share a laugh with a mom who is bouncing her only baby on her knee. He’s now the oldest of four.

Time plays tricks, bundling its long days into short, slippery years that bring with them unfathomable change. Where we were ten years ago heralds where we might be ten from now. Katie almost 24. Brooke just shy of 22. My limited imagination balks at the exercise. 

Of course it’s Brooke that I watch most intently.

I watch as she stays on my hip throughout the party, clinging to me like a koala to avoid the chaos at ground level, only sitting when it’s time to eat. I watch as I carry her from place to place, as she shows no (apparent) interest in seeing what the kids at her party are doing.

I watch where we’d put her high chair. Even at her own party, it’s set away from the table. Without knowing why, we knew she’d need her space. The tumult of other children was always too much.

I watch as the guests sing Happy Birthday and Brooke’s face never changes, never giving a sign of the knowledge that it’s for her. I watch as we lean in to help her blow out the single candle. I watch as we do it for her.

I watch my mom at her high chair, asking if she wants a piece of cake. “Brooke, do you want more cake?” she asks. “More cake,” Brooke says.

I watch my mom try to give her a forkful of cake and I watch her turn her head away in protest. I watch my mom do what we all did then – wonder why she doesn’t want what (we think) she’s just asked for. I watch knowing what I didn’t know then: that she wasn’t asking for anything; that she was echoing the last two words she’d heard. I watch knowing that it will be a year of months and days and hours and minutes before Katie points it out to us. And seven more until I will write the words.

It is 2007. Luau and I are sitting at the kitchen table, interviewing a home service provider. Or perhaps she’s interviewing us. I don’t know which end is up. I just know that we need help.

Brooke is three years old. She lives in a state of frustration. All we want is to help her. But we don’t know how.

We’re trying to come up with examples for the therapist – specific times that communication fails.

“Okay, here’s one,” I say. “I’ll ask her what she wants to drink. And she’ll tell me. And then I’ll bring her what she asked for. And then she’ll burst into tears or yelp or shove it back at me. I don’t know why and I don’t know what to do.”

I don’t realize that I’m crying until Luau hands me a tissue. I take it, but crumble it in my hand.

Katie has wandered over to see what’s going on. She’s been standing at my side for the last couple of minutes, watching, listening.

“Mama?” she asks, “may I say something?”

Three sets of adult eyes turn to her. “Of course, baby,” I say. “What’s up?”

“Well, when you ask her what she wants to drink you give her choices. And if you ask her if she wants milk or water, she just says, “Or water,” because it’s the last thing that you said and she repeats it. But she might really want orange juice. She just can’t tell you cause she can only say, “Or water.” So she’s probably getting mad cause she wants something else that you didn’t ask her.”

My mouth is hanging open. It will be weeks before we will hear the word echolalia for the first time. But our five-year old … she’s miles ahead of us. I’m not getting it because I’m trying to understand what’s happening from my perspective. Katie is getting it because she’s looking at it from Brooke’s.

The therapist looks from Katie to me, then back again. I try to collect myself from the table, the chairs, the floor, the walls. I try to gather in the guilt that coats every surface, to contain the fear and the helplessness that threaten to set the whole toxic mess aflame.

From this moment forward I will know that the most powerful tool I have to help my daughter is my best attempt to see things from her perspective.

“Katie, THANK YOU,” I say, grasping onto her words as though they are a life ring tossed into the middle of a dark and tumultuous ocean. “Thank you so much for telling us that, kiddo. That’s really, really helpful.”

She shrugs and wanders off.

I watch our life unfold on the screen.

I want to tell them.

Help is coming. 

A diagnosis is a year away. 

It will terrify you.

But only because you don’t know that it shouldn’t.

It will be the key you need – to tools, to understanding, to community. 

It isn’t going to be easy, but it’s going to be okay. 

I want to help those people on the screen. The ones who are so lost.

But time is the master of its own tricks.

So I watch.

And wait.

14 thoughts on “the people on the screen

  1. I was going to post about how my kiddo is a couple of years older than yours and how our story and experiences seem to be an echo of eachother and how some days are joyful and easy for the most part and how the only thing I wish i could change is helping kiddo know how much she is loved and supported to take away her distress when things are different or difficult …. but pretty much I just want to say, Jess, I respect you and your family and, from over the ocean, I support you all in your endeavours. x

  2. You took me back 10 years. Interestingly, this was the same timeframe for us too. 10 years ago though, my son was 7 in 2nd grade and what I had feared and long denied was blatantly obvious. Later that year we had him tested and by Sept had the diagnosis, aspergers. I knew it. I saw it. I asked several “experts” and I let them talk me out of it. My nephew has it as well so I knew. When my “Katie” got into school it became very clear. 10 years ago. It still feels fresh.

  3. It took some time, but I have learned over and over again that my children see each other so much more clearly than the grown ups in the room. I don’t know if it’s because they’re closer in age or because they all share that autistic neurology, but more and more I find myself listening to their observations about each other when I am stumped on how to help. As you say, they are the autism experts in my house. Beautiful post, as always.

  4. Amazing! We also went through the same things and in hindsight you always wonder how you didn’t see it………..how you didn’t know it……….and how things might have been different if you did. They stress about early intervention and my son didn’t start getting help until he was already 5. It makes me sad to think we could have gotten help long before that if only we had known. Your story truly touched me and I can relate.

  5. Jess, I’ve been reading Diary since 2010 and haven’t commented for a while, but I just wanted to say that a heart-wrenching post like this is what made me fall in love with your writing in the first place. So beautiful and so completely true. Happy holidays to you. 🙂

  6. I sobbed as I read this. I do the exact same thing. I study pictures and videos even real life conversations so intently. And most of all I study Cooper. And pray that I could know what our future holds. And I think a lot about how sad I was in videos and pictures but still smiled. No one knew. Merry Christmas to you!

  7. I read you everyday but most of the time you evoke emotions in me that are too deep, and too moving to even develop a response. Today is one of those days, but I am with you and always have been and always will be.
    Dad

  8. As difficult as this is to relive, we can only be grateful that Brooke continues to grow into the wonderful little girl she is. She is creative and bright and funny and loves her autistic self. We are blessed.

    Love you,
    Mom

  9. I hope that you also see even though they are lost, that the love is there.
    That even though you didn’t know why, you got that she needed to be away from the chaos.
    That she can watch that video and know that even then, her mama was her safe harbor. You held her when she needed to be held instead of forcing her to be on the ground to play with the other children.
    She can watch the video and see that her parents followed the “script” of a birthday party- cake, candles, blowing them out. Especially when it could have been just as easy to skip that step because she didn’t appear to have the interest.
    That even though communication was an issue, her family didn’t give up. It would have been easy to simply assume that she didn’t want any more cake and not offer any. It would have been easy to force that bite rather than acknowledge her refusal.
    You may have been lost. There may have been frustration, worry, fear, the beginning of desperation. But there was love.

  10. Kids are good observing one another! Katie, you’re just good. I have kiddos that their siblings don’t want to be bothered by their ASD siblings. Brooke is blessed having her!

  11. This is my first time reading your blog. In the back of my mind, I knew my little Logan was autistic. But we also had a hearing loss to deal with too. He was born with no ear canal in his right ear. So for a couple of years, we chalked it up to poor hearing. But still in the back of my mind, I knew… I knew what it was. Finally, after Logan had surgery to correct his hearing loss, we finally knew it wasn’t just the hearing loss. We knew it was autism. It was heartbreaking and a relief all at once. Finally we knew what it was. But we also knew there was no cure. Sure there’s treatments and therapies but so far no cure. Heartbreaking. So now Logan is in 1st grade and he’s doing well enough. He does great in the classroom but socially is still struggling.

    I sometimes look back at baby pictures and videos and I wonder “what happened to my sweet baby boy?” Where did he go? My Logan is still sweet and wonderful, but I’m sure you all know what I’m talking about. What happened to that wonderful smile. What happened to that awesome and uplifting giggle? Does Logan laugh and giggle now…of course he does. But it’s just not the same as he used to be. Maybe that with every child? But I look at those early days and sometimes my heart breaks. I often look into the future and wonder what it will be like. I hope this big world can accept my wonderful, eccentric little man.

    • help him find that giggle. for us, it came with whole-hearted acceptance of Brooke’s glorious little self – with celebration of her not despite autism but because of it, along with every other ingredient that makes her so uniquely her. It came when we stopped trying to fit her into a box that would simply never fit and started working as a family to break down all the boxes everywhere. it came. you’ll help him find his again. xo

  12. I feel like life as a special needs parent is always like this. We are always learning more about our children as time goes on, and sometimes it’s really tough to look back to a time when we just didn’t know better. But it can also show us how far we’ve come.

    I’m glad that there are parents like you out there who give the rest of us strength and a community to turn to so we know we’re not alone. Thank you for that 🙂

    ❤ Jackie

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