Yesterday, as we were leaving Nic and Emma’s gymnastics class, Emma found a stray balloon. No doubt left by one of the children who attended a birthday party there earlier, Emma looked at me with a sly grin, then grabbed the balloon and said, “Look! It’s a birthday party balloon. Take it home?”
Emma loves nothing more than birthday parties, balloons and singing Happy Birthday. “Sure Em. But remember to hold on to it, because if you let go, it’ll fly away,” I said.
Emma nodded her head gravely and said, “You have to hold it. If you let go, the balloon goes up in the air. Oh no! Don’t go away balloon. You have to hold it. But listen, if you let go, there will be no more balloon!”
Emma’s way of coping with anxiety is to repeat a script of sorts. These are things she’s heard from a variety of sources. She pulls together threads and combines them to make a dialogue that she then repeats. Many Autistics script. Some people feel scripting is to be ignored and even discouraged, but I find Emma’s scripts are informative and useful. It is the way she is attempting to communicate. I don’t believe they are nonsense or meaningless. I believe she uses them in situations when she cannot come up with words of her own.
Emma managed to get through the next four hours without losing the balloon. This was no small accomplishment as those four hours were packed with activities, ranging from shopping for shorts and an awesome camouflage swim cap for Nic, bathing suits for Em, swim goggles for me, ear plugs for all of us, slices of pizza for everyone, before meeting Richard at the local Y to swim. Emma attempted to jam the balloon inside our locker, (we ended up letting it float outside the locker, with the string inside the locker ensuring it wouldn’t float away.) After swimming we went to a room where they’d set up an obstacle course and bouncy castle. Meanwhile Emma’s balloon, which she’d secured inside my swim bag, stayed put.
Once outside as we headed home Emma suddenly gasped. All of us watched with dread as her beloved balloon sailed out of reach. In the past, losing her balloon would have induced a meltdown of epic proportions. “Oh no, my balloon!” Emma said, her tone and inflection sounded vaguely familiar. Emma stomped her foot and said again, “Oh no, my balloon! Can you tell how Katy feels about losing her balloon? Yes, Katy is mad she lost her balloon. We can tell she’s mad because she’s raising her fist and stomping her foot.”
I looked at Emma in shock. Emma was repeating the dialogue from an app Marc Zimmerman, CEO of the app The Social Express Lite sent me more than six months ago. At the time I showed it to Emma who liked it and watched the five different lessons a couple dozen times and so a few months later, I bought the long version of the Social Express, but other things took precedence, so it was soon forgotten.
“Emma lost her balloon,” Emma said looking at me as I awaited the meltdown I was sure would come. Instead, Emma stood still, gazed up at the balloon floating farther and farther away and said, “Emma’s mad she lost her balloon.” Emma stared at me for a moment and began to laugh.
I was amazed. This was NOT the reaction I expected. “Katy’s mad. Emma’s mad,” Emma laughed. She gave me her pretend “mad” face – frowning, mouth set in a silent scream – and dissolved into peals of laughter.
I was reminded of a conversation I had with a friend of mine (who’s autistic), just two days ago. She told me how going into a theatre program changed her life. She told me how theatre taught her a range of things, including an increased desire to read because there was a reason to, she learned how others thought and what motivated them. She said, “In theater, everyone is honest, they have to be. If they are not, the director says, No, be honest.”
“I am determined to find a theatre program for Emma,” I said to Richard. “I think it is the thing that could change everything for her.”
“I’m with you,” Richard said.
When we got home Emma and I watched the Social Express together. When the story with Katy losing her balloon came on, Emma pointed to the screen. “Oh no! Katy lost her balloon too!”
And she began laughing.
Emma demonstrating her angry face
Emma's Hope Book 
The caring and observant parent wins again. Love it.
Aw… thanks so much Richard.
Such a sweet story and I love the pic! :O) Theater can do amazing things for all of us! I LOVED IT! Miss it! Have you seen “Autism The Musical”? Neat little movie on a theater group….may have been in NYC?? Can’t remember..been so long ago since I watched it. The kids did really well!!!
Yes, loved that documentary. They brought the program to Emma’s school and we signed her up for it, but it was very disorganized with little to no instruction. When I inquired about the fact all the kids wear tearing around pretty much doing whatever they felt like, they told me this was “improv!” Which, I guess, it actually was, as are our lives!
Well bummer they didn’t run it quite like the movie showed! 😦 You will find a place! I myself wish life was like a good musical…..how fun would it be to just break out in song and dance whenever one felt the urge! I would be ALL FOR THAT! :O) Sing and twirl with Miss Emma! :O)
The business of show was made for Emma! As I’ve said many times before, I know for sure in my heart of hearts that Emma will be a rock star of Stefani-like proportions! Now, if we can only a find a decent theater class…
I’m working on it!
Awesome! She is going to rock the theater! Not improv though: scripts are key; you got that right.
YOU rock, Ibby!
YOU rock! Improv is actually cool too, once you are comfy with scripts, but not before. You are all such great looking expressive people (I’m betting about Nic though I haven’t seen his pic) and with yourself being experienced in acting and Richard being a scary-good creative writer that we hope has nothing to do with his real personality that you could do theater games as a family too and it might be a whole lot of fun. AKA if you don’t find a good program or the person I thought would be good if she is still around, you could get some cool books, look into it, and play around as a family. The loving-creative-scholarly combo is in your family like in mine and I think theater never would have had a chance to change everything for me if I hadn’t come from such a family. Having parents who always and truly Love/Live/Learn is the biggest advantage I can ever imagine.
First of all this comment had me laughing out loud. Particularly the “and Richard being a scary-good creative writer that we hope has nothing to do with his real personality…” Richard thought that was great too!
So Ibby, I did some research and guess who comes up sixth when you google “theatre programs for special needs children in NYC”? Specialgiftstheatre.org – http://specialgiftstheatre.org/board/ – there you are, second one on the home page! Except you guys aren’t in NYC! So I’m going to have to track down the other person we discussed and see what I can find out. I’ll keep you posted, but in the meantime I’ll be thinking of you with those devilishly handsome infants of yours gnawing on your fingers and just hoping they don’t get their sharp, little, dagger-like teeth in for a looooong time!
Thank you for sharing the story of Emma. I think theatre would be awesome for her. As the Speech Pathologist who created and wrote The Social Express I am so pleased to hear about how the program had positive impact of your Emma.
Mary Anne, thank you so much for stopping by to comment. What most surprised me was how Emma not only incorporated the script into her own experience, but that it had the power to change her experience of losing her balloon from anger, disappointment and upset, into laughter. It was a really beautiful moment.
Ariane,
What a beautiful story. I am speaking at a conference next week and am wondering if I share your story about the balloon ? Also I would LOVE to share Emma’s angry face…..would that be possible?
Hi Mary Anne, that would be fine. Can you attribute the story to this blog? Would appreciate it. Tell me how it goes!
I definitely want to find a theater program for my son as well. I came in when I was searching for autism and scripting, I’m struggling to figure out where I “stand” where this is concerned. On the one hand, it doesn’t seem to be “harmful,” on the other hand, I read warnings about how these can become addictive (well, they ARE self reinforcing…) and perhaps become preferred over social connections. Since my child does appear to like social connection however specific (us, other adults he knows), I am not as concerned, but today I found myself snapping “stop it!” a couple of times because it was happening at a higher degree than usual….
Hi Jane,
I’m going to put together some links to posts that might be useful to you on the subject of scripting. I have to do some other things first, but will try to get these to you by the end of the day, today.
It is very difficult as a parent to wade through the massive amounts of contradictory arguments, however I have found the most help from hearing what adult Autists have to say on any given topic. They are the “specialists” I seek first before making any decision.
I’ll get back to you.
Hi Jane,
Here are two links, the first written by an Autistic on the subject of scripting and echolalia and one of my favorite blogs – Just Stimming – http://juststimming.wordpress.com/category/language/
and the other – MOMNOS – is a wonderful piece written by a mom who candidly talks about her process through her son’s scripting. http://momnos.blogspot.com/2006/03/dr-strangetalk-or-how-i-learned-to.html
Jane, I just received this from a good friend of mine (she’s autistic) and thought I’d send it this one part on to you as it’s really wonderful. “I met a man who said everything through lines from famous movies, television shows and commercials. He had grown up in an institution, and autism was considered rare back then, so the people at work (a sheltered workshop) assumed he was just spouting quotations for no apparent reason or to stim, and maybe sometimes he was stimming, why not, but most of the time he was clearly saying things, and I heard him and translated. Finally, I was able to convince some people to listen and learn. Miraculous! they said: I was a genius, putting two and two together like that, a code-breaker. But I was not a code-breaker. I could secretly hear him because what he was saying made complete and logical sense, and it was worth the risk of saying so even though I was “staff” because he deserved to be heard by others and I knew they would be able to listen if only they found out how to do it.”
I highly recommend it! My 11 year old daughter has gained so much from her drama group.
All the best!
So glad you found a group, having a terrible time locating one and we live in New York City! You’d think if there was any place in the world with a terrific theatre program it would be here, but so far, I found nothing. Will keep searching!
Thank you so much for the links on echolalia, interestingly I’d come across MOMNOS’ post on scripting before, so it appears that I’ve looked for these answers before! Now i can see how my search comes in waves… I’d understand why my child scripts — I even venture to say that I know most of the functions of his echolalia (if he doesn’t know an answer, if he doesn’t understand the exchange/question/demand, if he is anxious, if he wants to say it because it feels good and makes him happy…) yet at times I find myself more readily accepting than other times. Then the times when I let it bug me is when I get online to look at parental responses to echolalia! But this is my journey thus far, sometimes I wonder if I were being a good parent if I allow the scripting, when I personally don’t see harm and I can remember when I was a child and I’d lose myself in my own internal scripts and I wasn’t on the spectrum and for me it was a way to pass the time and it felt good, I liked the sound of my voice saying these characters’ lines, etc. When I get online I find myself looking more for philosophies of acceptance from a parental perspective, sometimes I feel like I’m not in the majority because I don’t believe in cures or fixes right from the beginning. It does ‘help’ that I have a differently wired brain (depression, anxiety) and it hasn’t stopped me from creating an incredible life and forming strong relationships. I see the same for my child. Yes I have a duty to help him acquire skills and manage the stressors (at one point my depression was debilitating, so I don’t buy into doing nothing!) but I want to center myself on working with his strengths, with who he is, the essence of his being — not on fixing curing recovering whatever the word is. These words keep me fixated on looking at what’s wrong with him, when these ‘wrongs’ seem to me a moving target and based on a whole lot of opinions. There are so many ‘rights’ with the way my child is, that I can work with and build on, that I prefer to pay attention to.
You sound incredibly sane, rational and thoughtful. You also sound like a really good mother to your son.
Someone said once regarding my daughter – “as long as she’s progressing, it’s all good.” I’ve amended that to – As long as ALL of us are progressing, it’s all good – because if I’m not progressing also, in my understanding, in how I help her, in supporting her and seeing the positives, she isn’t going to progress as well and either am I!
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Emma sounds delightful!