so what's new?





It’s always interesting for me, er, well, OK, difficult for me, when someone asks, “So what’s new with the girls?” or “What are they up to these days?” I can always run through the litany of their current activities – “Well, Katie is studying the human body in school and will happily tell you many of the two hundred and six bones on the skeleton. She loves ice skating and art and sings in the children’s choir. Brooke is taking a swimming class through the autism alliance and proudly dunked her face last week. She is learning to draw more independently and she loves to sticker.”  


Yes, ‘sticker’ is a verb in my house. As in, “Where’s Brooke? Oh, she’s at the table stickering again.” She transfers endless rows of stickers from their packages to paper, creating what amount to sticker extravaganzas. Once complete, she takes the sticky frames off the sticker pages and adds them in all their 3-D glory to the top, making the pictures look like some kind of odd, colorful, architectural art installations. 


But I’m more of a color commentary kind of mom, and the broad strokes never really seem sufficient. I always feel like I have some funny Katie story. The kid is an absolute riot and provides and endless stream of conversational fodder. Like the other night when we were reading the bible before bed and we came to the story of Noah and the ark. Despite the fact that we were reading the children’s bible, the story was dark and somewhat gruesome. There’s just no sanitizing the destruction (by drowning, no less) of the human race. I shook my head as I read and at one point I paused and said, “Wow, this was a pretty bad time, huh, Katie Cat?” Without so much as a second’s pause she said, “Not for Noah.” After a couple more minutes of reading about the depth of the flood waters she said, “Oh and the fish. The fish did all right too I guess.” 


Makes for great stories. And there are the moments when Katie just makes me so proud of her that I just have to share. Like on Mother’s Day when she made me the card that said (in crayon, no less), ‘Thanks for working so hard for us.” I mean, hullo? She’s seven! Are you kidding me? Or like last night when she was telling me about an exercise they did in her Sib Shop at school. (Sib Shop is a wonderful program  for children who have siblings with special needs, run by her school’s social worker. They meet once a week at lunch time to provide a safe space to talk and share their feelings. Katie loves it.) The exercise was a fill in the blanks where they said, “My brother or sister needs a helping hand with ____” and “My brother or sister is a superstar at ____”. I asked what she said Brooke was a superstar at and she said, “Singing ABCs and being full of love.” Kid just kills me. 


And so, I brag about her. How would I not? I become one of the moms who no doubt induce eye rolls from friends. Oh geeze, here comes yet ANOTHER ‘how cool is my kid?’ story. Grrrreeeeeat.  


But when it comes to Brooke, I get stuck. I am no less proud of her. In some ways, perhaps I am even more so. I am so proud of how hard she works in school and at all of her various therapies. I am proud when she finds words and uses them to avoid frustration. I am so proud of her when she asks for help. I’m proud of her when she climbs up or down the ladder on the play set without getting ‘stuck.’ I am proud of her when she asks me to move Katie’s huge stuffed dog into the middle of her floor and she jumps off Katie’s bed on top of it.  (When she first started OT a year and a half ago, she couldn’t jump from a three inch high mat to the floor!) I am proud of her when she says grace at the table with the family and I am proud of her when she says her prayers at night, exactly the same way each and every time. I am proud of her when she says, ‘We cuddle together’ so that I won’t leave her room. 


But I don’t always know how to share that kind of pride in the context of the casual ‘what’s new?’ For instance, here are the HUGE moments in my house this week: 


Brooke said, “I don’t know.” She has never had that phrase in her arsenal before and it seemingly came out of nowhere, though they must have been working on it at ABA. I was absolutely amazed to hear it come out of her mouth. This will be an incredibly useful tool for her.  


Since it can be difficult to initiate typical dialogue with Brooke, I often find myself peppering her with questions to try to engage her. This can be frustrating and difficult for her, tiresome for all of us, and ultimately anxiety producing. She had learned the phrase ‘I wouldn’t answer’ a while back, but began to a) overuse and b) to shriek it rather than say it calmly. It became an automated response to questions when she was tired or cranky or the stars just weren’t aligned in a way to get an answer out of her. But this was calm and useful and socially appropriate. She just said ‘I don’t know.’ And I beamed with pride that my baby had a new phrase. I yelled like a lunatic to Luau in the kitchen, “Did you hear that??? Brooke said, ‘I don’t know!’” 


The second was a massive step toward victory in a long and ongoing battle against ‘the cough’. Ah, the dreaded cough. Was it listed as one of the ten plagues of Passover? Frogs, Blood, Locusts, Murrain … Coughing? No, hmm. Should have been. 


In addition to errant coffee grinders, babies crying, smoke alarms beeping, and a stuffed cookie monster laughing (don’t ask), Brooke is terribly sensitive to Katie’s coughing. Sensitive may be the wrong word. She’s sensitive like a vampire is ‘sensitive’ to light or Superman is ‘sensitive’ to kryptonite. Her reaction to any of these sounds is awful. Her body tenses, she shakes, she unleashes a blood curdling scream and begins to cry, all at the same time. It is a visceral flight or fight reaction. She literally looks as though she has been attacked. By a cough. 


To make a long story somewhat shorter (too late?), we have been through a lot with this. Katie has had persistent coughs at various points in her life, particularly over the last year. She has relatively severe seasonal allergies and the cough comes along for the ride as the pollen falls. Welcome to spring in New England. Our porch is literally covered in the yellow dust of the season. 


And so it was that last week at dinner time, I sat in the kitchen at the family table with Brooke while Luau and Katie ate outside on the patio. Luau and I waved at each other through the window a couple of times as we did our best to muddle through our fractured family dinner. There was just no way to sit together as Katie hacked and Brooke screamed and shook and cried and dinner descended into chaos.  


Over time, we have tried everything. We incentivized Katie not to cough when it looked as though she could avoid it (which broke a habitual cough that she had developed, but can and should obviously never be used when she has a physical cough.). We tried a reward system of gummy bears for Brooke (stay calm, get a bear). We tried covering ears, listening to an i-pod, humming. We wrote a social story  and Brooke’s wonderful teacher added board maker pictures  to it and laminated it for us so that she could all but ‘read’ it by herself.. And every time we tried something, we ended up right where we started – with a shaking, crying, screaming child. 


And then this weekend, something happened. It has been months since we’ve read the social story (quite frankly I’d all but given up on it) and suddenly, apparently relative to nothing (though I’m sure I just missed the trigger), Brooke said, slowly and precisely, ‘If I wait when Katie coughs, the noise will stop. Mommy and Daddy will be so proud of me when I stay calm when Katie coughs.’ She was reciting the lines right out of the story.  


I had to find a way to leverage this new development. I ran upstairs to find my hidden stash of her favorite stickers. Some people keep jugs of water, duct tape and batteries for when the end of the world comes. Me? I’ve got a stash of sparkly star stickers. (I win.) I grabbed a piece of paper and feverishly drew a grid. On top of it I wrote ‘Brooke’s waiting for the noise to stop chart.’ Katie adorned it with some hearts (her favorite) and stars (Brooke’s favorite) in red marker (Brooke’s favorite color) and we were off and running. There were twenty four boxes on the chart. I ran into the den to show it to Brooke and to explain my grand scheme.  


I said it exactly the same way about ten different times, never completely sure I was getting through. I explained that each time that Katie coughed and Brooke stayed nice and calm waiting for the noise to stop, she would get a sparkly star sticker in a box. When she filled up the whole sheet, she’d get a whole page of the stickers to play with by herself. Over and over again I explained the chart. I taped it to the wall in whatever room we were in so that she could always see it. It came to the bathroom, the den, the kitchen, her room, Katie’s room. The chart was on tour.  


And hot damn, it worked! Over a year into this coughing mess and something finally broke. It wasn’t without back steps, but what is? Last night was rough again, but she was able to stay calm enough times to fill the chart by bedtime. She got her packet of stars and stickered happily away. We all celebrated the victory with her as though she had just hit a game saving home run. She had. 


So, when people ask, “So what are the kids up to?” Do I say, “Oh my heavens, huge weekend at home  … Brooke didn’t freak out when Katie coughed! Well, maybe not the whole time, but a lot of times and it was huge and it may mean we’ve finally turned a corner and oh yeah, she also said, ‘I don’t know!’”  


Well, that’s what’s new and I’m incredibly proud, so roll your eyes if you must, but I’m gonna tell you how cool my girls are. Both of them. 


3 thoughts on “so what's new?

  1. I’m way behind on your posts, Jess, but I just wanted to share with you that one of my favorite ABA programs to run with my verbal friends is “Responding to Unknown Questions.” “I don’t know” can be a BEAUTIFUL phrase. I’m psyched for you and Brooke! 🙂

  2. Jess – I have been thinking of this post for several months now and especially when writing our Christmas newsletter for the holiday cards. I have twin 5 year old boys and one is borderline Asperger’s. We try not to compare the boys but it is hard. The milestones that one reaches are very different than the other’s. While we are lucky that my son “swims in the shallow end” of Asperger’s, his challenges aren’t outwardly apparent to many people, which causes some issues. Anyway, just wanted to let you know how much this entry (and many others!) struck such a cord with me. Please keep writing this blog. I have been so inspired and found solace in your words. Thanks!

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