rewriting the script

~

Beginning with the degradation of structure at the end of the school year and then again at the end of ESY, Brooke has been scripting and stimming INTENSIVELY. This is a yearly phenomenon – the transition time and lack of predictability / structure take their toll. As her anxiety goes up, so does her need to create sameness in her world. She is therefore scripting extensively – a lot of Elmo’s World, Godspell (a favorite movie) and random stuff from favorite YouTube videos (the ‘No No Baby’ is a current favorite perseveration), books and made up scripts. You’ll likely begin to recognize her scripts as such fairly quickly. For example, if you ask her if she’s OK, she’ll answer, “Just a little sinus trouble; ignore it.” Once in a blue moon it’s contextually appropriate. Either way, it’s a quote from Bert on Sesame Street. Another to note is “You must think I’m stupid” from Charlie Brown. We’ve been trying to extinguish that one for obvious reasons, but it has proven to be a challenge.

~ From our letter to Team Brooke, September, 2011

*

Scripts. Ah, what to say about the scripts?

We live in scripts. My girl’s speech development was entirely echolalic. In the beginning, that meant that if you asked her if she’d like milk or water, she’d say, “Or water.” The problem being that very often what she really wanted was the milk, but the only thing for which she was capable of asking was the last thing presented. And we had no idea.

Then the scripts became bigger. Books, television shows, dialogues she’d heard once, strings of words she’d made up. Our lives were littered with them.

And then, somehow, with the sheer force of will, she made them functional. She managed to lift and hoist chunks of conjoined words from memory and drop them into conversation. It was – and is – incredible to watch.

Can you imagine having nothing but isolated phrases to choose from in order to interact with the world? Just for today, if someone handed you a piece of paper with bits and pieces of scattered dialogue from Dora the Explorer, Blue’s Clues and JoJo the Clown, do you think you could use them – and nothing else – to tell the people around you what you wanted / needed / felt at any given point in the day? She did. To the best of her staggering ability, she did.

Eventually, she moved mountains and novel speech came. But the scripts never left.

In the summertime, they are their most prevalent. Call it regression, call it a search for predictability at a time when her world is nothing but predictable, call it comfort. Call it whatever you want, but the scripts are on in full force this time of year.

When I walk in the door from work, I am greeted in the middle of a script. Blue’s Clues and Godspell are the current favorites. Sometimes I redirect her. Sometimes I say that I’ll join in after a greeting. Most of the time, I play along in some fashion.

For the most part, Katie can’t stand them. She calls them the Scripties. Most of the time, she does whatever she can to avoid participating. Sometimes she uses them as currency. “Brooke, I’ll do any script you want but first you have to …” It works. Sometimes.

Determined to find a way to let her use her love of scripts, I searched high and low for a theater group that Brooke could participate in – and happily, I found one two years ago. Ever since, Brooke has attended a special needs drama class in town.

They meet once a week during the school year and put on not one, but two performances. The kids need a lot of help. There’s a ton of prompting from their teacher, Drama Dave to say their lines on cue. Except for one little girl. She’s got the idea down pat.

Last night, after dinner, the girls and I began to play together. (<;;—-I'm going to let that sentence stand alone, if you don't mind. I'm hitting enter now, so we can start a new paragraph and continue the story, but that sentence needs to stand alone.)

Brooke asked if we would play the Worst Pancakes In the World game. Katie and I shrugged, neither of us knowing what that meant, but both game to find out. It turned out that it was a script that she wanted us to follow, from what I don’t know. There were three roles – the CHEF, the FRIEND and the DOCTOR. And it went something like this ..

FRIEND to CHEF, who is stirring something in a bowl: Hey, whatcha doin?

CHEF, while stirring: Making pancakes. Want one?

FRIEND: Sure. *Eats pancake, grabs throat* Ewwwwww! That’s the worst pancake I’ve ever tasted! *Falls down and dies*

CHEF: Doctor, come quick!

DOCTOR: He’s dead. We will bury him.

End Scene.

Last night, if you’d walked into my kitchen, you’d have found the three of us laughing so hard we could barely breathe. We traded parts. First Brooke was the CHEF while Katie was the FRIEND and I was the DOCTOR. Then Katie was the DOCTOR and I was the FRIEND. Then she was the CHEF and Brooke was the FRIEND and well, you get the idea.

I will never forget Katie shouting, “But um, I’m not dead. And I’m not a boy! You’re a stinky doctor!” (And yes, Monty Python came immediately to mind). Or me, playing the FRIEND, lying on the ground as the CHEF and the DOCTOR attempted to ‘remove the body’ – each pulling a foot and getting nowhere.

We laughed. We played. We laughed some more. We riffed off of our parts, using our deepest voices when we were boys and our highest princess voices when we were girls. Eventually, we fell down into a heap of giggles. At some point, Katie hit Brooke in the eye. By accident. And even that just felt deliciously typical. It’s not a sibling interaction until somebody gets hit in the eye, right?

It was John Robison who first said it to me in a way that I really understood. What are seen as challenges for kids like yours, he said, might just be gifts in the right settings.

It took a long time for that to make any bit of real sense to me. I mean, I got it – I get it – but it has taken years for it to really, truly have meaning.

Last night, I’m pretty sure I got it.

29 thoughts on “rewriting the script

  1. Last night was poor joy for all of you. I can hear that laughter in my head. That was incredibly wonderful!

    Love you,
    Mom

  2. “Gifts in the right settings” is really something to think about, isn’t it? My 6-year-old son hardly speaks at all, but scripts all day long. So my challenge should be to find the setting where his ability to repeat back an entire episode of a show he’s seen twice will be a gift for him. Seems like there could be fun possibilities. (Also, your chef/pancake game sounds fun!)

  3. Jess, this is EXACTLY how my son’s language developed and still is scripty today. He began “mitigating” his scripts around age 3, natural conversation finally started to emerge around 4/4.5 years. We SO get this. Have you read the seminal mommy blog post on this from MOM-NOS? It got me through the early days: “Dr. Strangetalk or How I learned to stop worrying and love echolalia.” It is canon in the book for raising a child like this, imo.

    • thank you so much for sharing that! i went and looked it up – even though mom-nos is a dear friend of mine, we didn’t know one another back then and it was wonderful to read it. then again, i’d read her grocery list if she published it :)

      i was actually planning to link to another of her posts on the topic, but ran out of time this morning .. back in February, i’d written the following here in diary ..

      “If you have a child who uses scripts in any way, shape or form, you NEED to read this. If you have a kid who gets dysregulated by change, you NEED to read this. If you teach or come into contact in any way with children like mine, I IMPLORE you to read this.

      Thank you, MOM-NOS – for sharing your insights about your utterly fabulous kid with us. He is a wonder, and he is incredibly lucky to have you as his mom.

      http://momnos.blogspot.com/2012/02/spirited-away.html

      as so may of mom-nos’s posts have, it changed me – and it changed the way that all of us in brooke’s life look at her scripts.

  4. I read your blog everyday an everyday I see how much Trae my 3 year old is like Brooke. Right now his scripts are “tonight on CBS” ” this fall on CBS” if it’s morning, “go get Nico(baby brother)” and also anything from Nick jr. There are days I wish Nick could teach all necessary life skills, safety awareness, eating with utensils, and potty training. We are in Ohio and they do have year round school for kids who “need” it. Trae was determined not to need it yet since he is only 3 and there are only so many spaces available. I was wondering though, do you use the autism scholarship at all? I’m not sure if that’s federal or on a state level?

    • paulina, i’m not familiar with autism scholarships. i know many states have autism waivers – not sure if it’s similar.

  5. My little lady’s favorite script is Goonies! She has spent the summer “casting” the movie with all of her favorite friends (if she likes you, she gives you a role!). She is Andy. Her twin brother does not have a role because Andy’s brother does not appear in the movie…makes sense, right? A very cute boy from vacation bible school is Brand. Mikey is one of her brother’s gymnastics teammates who carries an inhaler. Mouth is JohnSmithMyBoyfriend (a boy from school whom she claims is her boyfriend. I am not sure he is aware. His name is NOT John Smith). Chunk is another teammate from gymnastics…he is kinda slim so not sure how he got cast. Data is a troublemaker boy from school. And Stef is her FAVORITE camp counselor. I asked who I was and I was initially told that I was Andy’s mom, but recently she has assigned me the role of Mrs. Fratelli. Not so happy about that casting. ANYHOO! So glad we can find joy in many of these quirky situations! xoxo!

  6. My son – who is just now starting to talk (yay!) – scripts from his older brother. He’ll use lines that he’s heard his older brother use before. Sometimes it fits and sometimes it’s way off. I’m really hopeful that with time and coaching, he’ll begin to use more independent language but right now, the scripting feels like a gift to me. At least it seems like he’s trying to communicate with us and I love the very sound of his voice even if what he is saying isn’t always appropriate. That chef/friend/doctor game does sound like fun. I may try it.

  7. This sounds so familiar. My son, who is 6, uses his echolalia and scripts to communicate. It is amazing how he can weave these together to form communication that we understand. He is a big quoter of tv shows. Lately, he gives us a phrase and we guess what it is from. Those moments of connection are everything!

  8. Love this entire post. This is exactly the way E’s speech developed, too. (His first scripted phrase was “Oh man,” courtesy of Swiper the Fox on Dora.)

    It is indeed amazing to behold…and most people simply cannot appreciate the sheer determination and work involved by our precious ones. Thanks for your eloquent description.

    And as for “playing together,” I understand the magnitude of that, too. E’s 13 now and I still hold my breath when he and his brother find themselves spontaneously playing together.

  9. Whenever I looks at Little Miss’s diagnosis sheet (which includes, among other things, the words “possible MR,”) I think about the scripts. Little Miss also learned language one script at a time. The fact that she can now bend and twist and manipulate those scripts into functional language is nothing short of genius. Anyone who thinks otherwise has a lot of learning to do!

  10. This was a fantastic ray of light this morning – made me smile and laugh – thank you! My son is still stuck in “Script Land” and that is our norm and we have all the delicious fun we can with it… but I look forward to what comes next :)

  11. My daughter learned language in chunks (gestalt language acquisition according to the SLP), and it has been amazing to watch as she started to mold the scripts into ways to communicate.

  12. Not to advocate for Drama again, but ahem — the chance to script appropriately, to try things out in a safe environment, to make believe? It’s the world I live in. And for many of our kids, it’s the ticket. Bless you, bless Katie, and all of the Drama Daves out there – and especially, bless the kids who have been shape shifting phrases and scraps and funny words to be understood. What intelligence and imagination.

    Well done, Mama.

  13. Wow!! It’s as if you read my mind with this entry!! My 6 1/2 yr old daughter has been “scripting” alot lately!! She started scripting when she was 3….we cut her off from Nick Jr. and it went away over time….it was the hardest thing for us to do but tough love isn’t easy:( Scripting has come back in full force this summer from you tube videos…tons of quotes from Nick Jr.’s Dora Kai lan and “see ya” “see ya next time” from the backyardigans…the list goes on….I never thought of how to play along with it like you did with your girls that night! What a wonderful night of bonding you all had:)!! Reading your blog has helped me in knowing that I’m not alone and I now have a better understanding as to why scripting has returned this summer….I’m trying to lesson her use of her itouch but it’s so hard bc I want her to be happy….at the same time she is going into 1st grade so I am hoping some of it stops….She does crack me up though with the stuff she repeats:) Looking forward to the next entry:)!!

  14. Hey there, Can’t wait to see you in DC!!  I love this blog, and this one in particular is awesome, instantly thought of you … wonder why? Take Care, L

    ________________________________

  15. Jess, I’ve been reading diary for about 2 years,and have often considered commenting on how similar your Brooke and my Vincent are. As much as I know and agree with the fact that if you know one person with autism, you know one person with autism, I still find myself wondering,”Who is this person living a life so parrallel to my own?” Hell, we even had an almost identical experience on the same caterpillar at some carnival, and our comfort song was “The itsy-bitsy spider” from infancy through toddlerhood. These two peas in apod even look like they could be siblings(or at least cousins.)There are many more eerily uncanny similarities,but I just want to thank you for articulating so brilliantly on this journey we share,and for helping us to evolve together in our thinking.You have been an extremely positve influence on so many of us.P.S. “You must think I’m stupid!” (Yeah, we’re Peanuts fans ’round here!)

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