One of the main questions I had when I began considering facilitated communication for my daughter was whether it was applicable. After all she has some language, she has no problem pointing and is even able to type with her two index fingers. If given sentences to copy she can type them pretty quickly on her own without anyone physically touching her. So why would we even consider supporting her? Wouldn’t that be a step backward? These were my thoughts as I began investigating FC. *Please remember as you read this, I claim no expertise in facilitation, I am very much a beginner and am learning and questioning as I go.
Let me tackle these questions as best I can ~ Why did we consider supporting her typing when she already can type independently and has some language?
Em’s language is unreliable to us. I do not mean this as criticism, but as fact. We (and I am not only including my husband, but all non Autistics who come into contact with her) cannot know that if asked something her verbal answer is what she actually means. She relies a great deal on scripts and we do our best to interpret them, while knowing that we may be entirely wrong in our interpretation. Obviously if Em yells “No!” and then bites herself, we aren’t completely clueless. We understand that she means to say no and is unhappy with whatever it is that she is protesting. But the less obvious communications are not so clear. We do our best, but our best often falls short. I am not one who believes my neurology is superior to my daughter’s. I believe my neurology is greatly enhanced by the hundreds of accommodations I get in life and because our society is set up to help those like me operate in this world with fewer limitations than are available to my daughter. But that is probably a topic better served in a separate post.
When I went to the Autcom Conference this last fall, it was the first time I had witnessed so many of all ages communicating with a facilitator. It was a mind blowing experience. Seriously I felt as though I was on a mind altering drug for two days. Seeing so many communicate in this way was a transformative experience. It opened my eyes to what was possible. It was impossible for me to witness children, young adults, people my age with everything from severe physical challenges to few physical issues, all communicating their thoughts by typing and not ask, could this help my daughter. Some had some language, many had none, others read what they wrote, and still others did not. Some required help isolating their index finger, some had support at the wrist, many had support at their elbow, others were supported with a light touch on their shoulder and still others required no physical support at all. As I watched all these people, as I listened to their words, I kept thinking about my daughter.
Despite my daughter’s language she was not communicating at the level I was witnessing. At a certain point I had to ask myself this question ~ If we gave her the right support, would she not be able to communicate at a more complex level than she currently is? And the answer to that question was, yes. Yes because from a very young age she has demonstrated a level of thinking that is far beyond what she has ever been able to verbalize. I’m going to quickly backtrack to say, our goal for our daughter was always that she be able to express her thoughts verbally. Our thinking was, if we could just get her to speak everything else would fall into place. But I am beginning to realize this goal was limiting her and us in how we helped her. I now feel strongly and believe that speech is not the end goal, though communication is. Giving her the tools to communicate effectively in whatever form that may take has become our new goal. If that enhances her ability to speak, wonderful, it will be one more thing she can use to navigate life.
FC is all about resistance. This idea of resistance was the single biggest misconception I held about FC. I couldn’t understand why I would offer resistance when what I wanted was for her to type her thoughts. It seemed counterintuitive. But just as my daughter prefers verbal scripts, she also tries to type those same verbal scripts if given the opportunity. Resistance provides her with several things, it does not allow her to impulsively type just any key, it doesn’t allow her to type out favorite default scripts and it gives her time to think and then type the thought that is in her head. When done well she is able to communicate complex and sophisticated thoughts. I am not suggesting that she is suddenly writing sonnets or quoting Shakespeare, but she is capable of typing extremely self-reflective and introspective ideas which go way beyond anything she has ever been able to verbalize. When she is “in the zone” and by that I mean has a facilitator who knows what they’re doing and is giving her the proper amount of resistance her entire demeanor changes. She becomes intensely focused and there is a kind of calm that overtakes her. It is as though she is tuning everything else out. It is just her, the screen and the words she is typing.
I hope I’ve done her experience of this process justice, but until she decides to describe it herself, my interpretations will have to do.
*Judy Endow made a very insightful comment below and so I am amending the above sentence as it is an assumption that I cannot know to be true. That sentence should be:
I hope I’ve done her experience of this process justice, but until we are better able to facilitate our daughter so that she can describe the process in her own words, my interpretations will have to do.
For those of you who rely on FC to communicate I’d love to hear if my description of what I’m witnessing resonates and is at all accurate or reflective of your experience when typing.
You’ve described yourself as a “nonspeaking (at times) Autistic.
“Yes, I think the phrase “nonspeaking at times” captures my experience, and also that of others who do have speech capabilities but can’t always access them. Because one can speak at times does not mean that speech is a reliable form of communication for that person. Also, when someone can speak some of the time, others may not notice that they are having trouble speaking. I have sometimes not been able to speak and other people just thought I was “being quiet” or did not have anything to say; that dates back to childhood.”
Why did you make a video of you not speaking?
“I made the video because we need to change some of the ideas about “high functioning” and “low functioning” Autistics. Not being able to speak is equated with “low functioning”. A constellation of characteristics are said to be true of only “LF” people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while “HF” people are said to have another set of characteristics, also fairly stereotypical, such as being “geniuses” who are good at computer programming and lack empathy. These binary divisions don’t address the wide variety and range of characteristics of Autistic people, and paint a limited picture of individual Autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their “end” of the autism spectrum. I have always known I can’t speak on a regular basis, but the conversations about “nonverbal” people assume that I have a different experience when in fact it’s not so different at all.”
Can you talk about how and why you sometimes are unable to speak?
”I can’t say I speak “most of the time,” since most of my waking hours are not spent talking. I showed on my video, even when I am alone, I frequently can’t talk. I don’t need to talk at those times, but I am very aware that if I were suddenly presented with a situation in which I needed to talk, I would not be able to. I am, however, usually able to make what some Autistics have called “speech sounds,” which means that I can say something, even if it is not exactly what wanted to say. I have a number of reasons for not being able to speak at any given time. I distinguish between not being able to talk at all and having trouble with word finding, which does not make me lose speech, but can have some interesting results when I find a word that is not the right one! I can go “in and out of speech” several times during the course of a day.
The following list has some of my reasons for not being able to talk. These are not in any particular order: Sensory overload, being tired, reading or seeing something disturbing, thinking more in visual images than in words, trying to talk when other people are talking too fast and not taking turns‒which is not limited to the autism spectrum, although a lot of literature exists about teaching us to take turns. Some of that teaching is necessary, but I think it should be introduced to non-autistics as well!”
Are there other things that stop you from being able to talk?
Another thing that will stop me from being able to talk is to have big chunks of time where I am not talking because I am mostly alone, like when my son spends the weekend with his dad. After a weekend spent primarily not talking, I am not used to it and have trouble getting started again. It does not take more than half a day of not talking before I need to urge myself to take it up again. It’s the inertia of not doing it, plus I have to remind myself, consciously, of how to move my muscles (mouth, lips, larynx) and intentionally will myself to speak, which does not always work. Sometimes my son will ask me “Mommy, are you having a hard time talking?” and if I manage to say “Yes,” I am able to start talking again, although I can have a hard time formulating sentences and finding words for a bit.”
Of all the items on the list, which ones affect you the most?
“The thing that will stop me cold, suddenly switching from being able to speak to not being able to utter a word is seeing, reading, or hearing something that is disturbing. I write indexes for nonfiction books. Some of them have very graphic descriptions of things like genocide or war. I did my “make myself talk experiment” on a day when I was using voice recognition software to do data entry for a book that had ten chapters of very disturbing material. I used VRS a lot at that time to save my wrists and fingers for playing the organ. Since I am a visual thinker, not only was I reading it, but also seeing it in my mind, like an awful movie that I did not want to watch,. I found myself typing instead of dictating, and realized I had been doing so for maybe half an hour. I said to myself, “Why did I switch to typing?! I don’t want to be typing!” and my experiment was underway. I spent the next two hours trying to make myself talk, with no success. I was online at the time, so was typing to people telling them about the experiment. Some of them were a bit concerned that I was trying to force myself to talk when I couldn’t, but I needed to find out if I would be able to talk if I tried really hard. My answer was provided after two hours, in the form of a small squeak. That’s the only sound I could make after all that trying. I had two realizations as I finally ended my experiment, still not able to talk except for that squeak. The first was that it reminded me of when I had an epidural for a procedure and tried (yet another!) experiment to see if I could wiggle my toe. The doctor got “mad” at me and told me I was actually wasting physical energy I would need to recover from the procedure. I had the same feeling of exhaustion from trying to make myself speak. The other thing I realized is that maybe I should be carrying an autism card with me in case I was at the scene of something upsetting, like an accident or crime, and could not talk to first responders. Some things that I find disturbing and thus making me not able to talk are not that dramatic. It can be someone saying something that I did not expect them to say (not limited to “bad” things) or anything unexpected or surprising.”
What are your earliest experiences of not being able to speak?
“When I was a child, there were many times when I could not speak. I think very early on, I was not very aware that I could not talk at times; I simply did not talk when I couldn’t. I definitely spent a lot of time looking at things like dust motes in the air and the thread on my blanket and other tiny little interesting things; I have no idea if anyone tried to talk to me and got a response, how fast a response they got, and whether or not I was conscious that I wanted to say something but couldn’t. In later childhood I was more aware that I was both not speaking and wishing I was. I attributed loss of speech to being “shy,” and was angry at myself for being that way. I spent quite a few decades having times of not being able to speak, including the entire day once, and being angry at myself for not being more “brave.” Reasons include some social ones, such as being afraid of another person for whatever reason, feeling “on the spot,” having a particularly anxious day, people interrupting me. I think people were not aware they were interrupting me, as my speech was so tentative. Other reasons include being tired, having more visual thinking and not the accompanying language-based thinking, since my thinking is visual with an audio soundtrack and the soundtrack sometimes drops out for whatever reason. Sometimes the lighting or the color green will render me speechless. I love green! It is very mesmerizing! It often makes me unable or disinterested in speaking, especially the green of a large field of grass. Eeeeeeee!!!!!”
When did your views regarding your inability to speak at times change?
“After I learned about autism, I started thinking more about the reasons I lost speech. I met people who either could not talk at all, could not always reliably access speech (like me!), stuttered (like me, again), had trouble finding words, or had to say other words, circling around until the right one was selected, such as one of the “big words” I used to get teased about in school.
One of my ongoing word-choice problems is “French toast.” Early in the morning, I can’t think of “French toast,” for some reason. I ask my son if he wants “Um, um, um, um, …. uh… (then I draw a square shape in the air, since I can see the French toast clearly in my mind) … um, square things!…. French toast!” Since my son now knows that “square things” means French toast, sometimes we just stop at “square things” and he says yes or he will say, “Mommy, I want square things!” and we laugh and I make the French toast.”
Does it trouble your son that you can’t talk at times, or have trouble saying what you mean?
“My son is very good at talking about things he doesn’t like, but I don’t assume that he would feel entirely comfortable directly telling me things he doesn’t like about me. The things he does say indicate support rather than discomfort. A few times I have been annoyed at myself for stuttering and he says “Mommy! Don’t ever be mad at yourself for stuttering!” or, a few times, “Mommy. Stuttering. It’s a way of life.” I don’t not-communicate with him, so he does not feel ignored. I use alternative ways of communicating with him, just not talking. I write, point, use some of my extremely limited repertoire of ASL signs. I once was writing to him about what to wear to church and he wrote back “Yes, mother dearest!” He (as is true of most people I write to) matches my communication mode and writes back. I have written to him (and to others) “You don’t have to write to me; I can hear you!” He has noticed, and told me, that when he comes back from visiting his dad I “seem different.” We have talked about his coming back as a transition point- the house is suddenly noisier, and definitely “talkier.” I have often said that my child talks to think, so we are quite different in that way. I am working on what would make the transition from “kid gone” to “kid in the house” an easier one for both of us.”
For people who do not have difficulty speaking, they may have trouble understanding how someone might be able to speak in one situation and then not able to in another. Can you talk more about this?
“Some abilities are not there every single time a person wants to access them. This is true for all people, but for an Autistic person, these fluctuations in abilities and access to abilities might be more pronounced. If I don’t play the organ almost every day, it’s almost like I forget how to play it. That’s why I always practice on Saturday night and Sunday morning before church. There is no way I can go in there cold and play like I want to. Think of something like delivering a presentation. For most typical people, there will be good days and bad days, presentations you wish you could do over, and days when you were really “on your game.” Or, think of your favorite sports team and player. Some games are not so good; other games the team really does well. But playing the organ or hitting a home run is not an essential life skill (ballplayers and organists feel free to disagree!). But when it comes to anything considered really basic, like being able to talk, a sense of mystery surrounds the topic, when a person can do it one time and not another. I maintain that it’s not that different anything else, but is more noticeable and pronounced when it’s something that is expected of everyone, and when one can do that “expected thing” most of the time. Maybe for some of us talking is an extreme sport, in the sense of having to really work, practice, try hard, take risks, and think consciously about what we are doing, whereas for some people the ability to talk is very natural and not even a conscious effort.”
Talk about the idea of language and thinking.
“I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with “not being able to think,” “being lost in an unknown world” or anything other than specifically not being able to talk. For some people it could mean a lack of focus on “the present moment” (how many people are fully present in each moment anyway?!) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because someone can’t talk, they can’t think. You wouldn’t look at someone who has a tracheostomy tube and go “Oh wow. That person can’t think!”
What is it like when you’re unable to speak while in public and are expected to?
“It’s a bit nerve-wracking, but only in situations where people do not know me well and are expecting that I can speak like a non-autistic person. I try to anticipate what I will need to be able to communicate at those times but I can’t always build in my own supports. When I am with friends, it’s no big deal if I can’t talk or can’t talk much. In work situations it’s more difficult for me to feel calm about it. Unfortunately this expectation is not limited to people who don’t know much about disabilities, so that I have had to really struggle at autism-related events where there really aren’t accommodations for Autistic ways of communicating. It’s an ongoing process for nondisabled people to learn about communication differences and to anticipate them so that Autistics and other people with communication disabilities aren’t doing most or all of the work to create our own accommodations.”
How do people react to you?
Really, I mostly don’t get reactions, because often the times that I can’t speak coincide with the other person continuing to talk, maybe because they think I don’t have anything to say, or that they are like “Well, if she’s not going to talk, I will!” I do get all kinds of reactions, from total acceptance to “you could if you wanted to- try harder” kind of thing that made me feel sad when I was making the video. Sometimes people don’t believe me when I say (in speech or writing!) that I have trouble talking. I have to be very clear that I mean not being able to talk at all. I have learned that “trouble talking” might mean not saying the right thing, or stage fright, and “I can’t talk right now” can mean “I am too busy to deal with you” rather than that I literally an unable to speak with words coming out of my mouth! I have had a few mixups when people did not know I meant “I can’t talk right now” very literally. Sometimes people just don’t quite believe me and think I am making it up. I am not sure why they would think I would go to that much trouble! There are also people who have never heard me stutter, who think that I don’t, even though I tell them I do. They are going to get treated to another video in a few weeks! I was finally able to capture myself stuttering at a time when I also had the webcam with me.”
Are there things that help you speak after a period of not speaking?
“I mostly just have to wait. I don’t particularly want to talk a lot, but I need to. It’s just one of those things that is expected, and it is expected that if I can do it some of the time, I can do it all of the time. It might seem that someone who can speak but loses speech at times would want to find ways to prevent speech loss, but I often welcome not being able to talk. It gives me a break from the exhausting task of speech production. My idea of the perfect conversation and this is ideal for a number of my Autistic friends, too, is two laptops or mobile devices or text-based equipment, but we can be in the same room together writing to one another. I don’t get a lot of this because I live in a rural area and most of the people I write to are long-distance. Some friends locally are very accepting but we don’t have any alternative setup other than me scribbling on paper. I also get way overloaded by hearing other people talk, as it challenges my auditory processing abilities and I can only take so much talking. If other people, whether or not they can speak, would type to me, I think I could get a lot more accomplished with the interaction with that person. Or, at least I think I could. If writing is not that person’s strongest form of communication, it will be a limit for that person. We should not be expected to always accommodate “talkers” and not the other way around. But it does take extra effort on my part because people can’t tell just from looking at me that I am a person who sometimes can’t access speech.
Ideally, we could take turns using each person’s communication strengths and weaknesses, assuming we are able to do that much. Of course, sometimes it just won’t work.”
When I went to get my Master’s degree in Creative Writing my favorite class was one in which we spent the entire semester dissecting two paragraphs from Virginia Woolf’s A Room Of One’s Own. We spent two weeks on ONE sentence! This was bliss as I’d never completely understood the word before. Pure bliss. Needless to say, I was the only student in a class of about 25, who felt this way. Everyone else grumbled and complained, spoke of their excruciating boredom, many even transferred out of the class. I couldn’t understand their feelings. What was NOT to like?
I’m a big fan of the highlighter, so it was with some amusement that I read a note from Emma’s teacher last night, “She enjoys highlighting words at school and this will also help to increase her ability to read sight word vocabulary…” Her teacher had thoughtfully included an enormous neon yellow highlighter in her binder! Love that. If I had a photo of a random page in Douglas Biklen’s book - Autism and the Myth of the Person Alone I would insert it here as almost every page has notations and sentences highlighted. Such as this one from the chapter, Reflections on Language – Lucy Blackman: ”Birthdays were happy, exciting, chaotic, and connectional with food – the ultimate source of pleasure – so excitement was a birthday party. But excitement, terror and fury are very similar emotions, so I still scream “birthday party” when expectations are more than I can cope with.”
In Aspen, Colorado where we go several times a year, they have fireworks at the foot of Aspen Mountain on the Fourth of July and again on New Year’s Eve. Emma both looks forward to the beautiful display and is terrified by the sound they make. She calls the fireworks “motorcycle bubbles” which is such a wonderfully descriptive phrasing of what she is seeing and hearing. This idea that “excitement, terror and fury are similar emotions” is not something I’d considered before. While walking the dogs on the ranch road with Emma, who has then (seemingly) randomly said “motorcycle bubbles”, I’m left wondering why she would say this. Now I question whether her fear of dogs is similar to the terror/excitement she experiences from the fire works display. She loves sitting in our neighbor’s house protected from the loud booming sounds, while still being able to see the beautiful colors of light raining down on to the mountain and town below.
Could this also be why she links rain to “motorcycle bubbles”? Is rain equated with an electrical storm or the “raining” of lights during a firework display? I can, literally, become lost in this kind of thinking. I find it fascinating and exciting. Like Virginia Woolf, whose writing I happen to be a fan of, Emma uses such disparate and surprising words to describe things. I am reminded of the German word for “skyscraper”, the literal translation, I believe, is “cloud scratcher”. How fantastic is that? It’s beautifully descriptive, even poetic.
One of my favorite Cloud Scratchers – The Chrysler Building
“Go to Natural History Museum with just Daddy,” Emma announced this morning.
Because of the Jewish New Year it’s a four-day weekend. Richard took Em to the museum yesterday. Today is my turn to hang out with Em, while Richard spends the day with Nic and his friend Masiah.
“I know you do love going to the Natural History Museum with Daddy,” Em said as I came over to her.
“But Em, I’m going to spend the day with you. What do you want to do with me?”
“Emma loves Natural History Museum with Daddy. But they wants Museum of Natural History with Mommy. I love playing elevator game with Daddy. Emma loves BioLife. Emma loves…”
“Em, what do you want to do with me? Daddy’s staying home today. I can take you to the Natural History museum. Is that what you want to do?”
“Go to Toys R Us with Mommy, then Natural History Museum with Daddy!”
“No Em. It’s just you,” I pointed at her, “and me today,” I pointed to me. ”What should we do today?”
Emma whispered, “Go with Daddy! Oh I know you want to go with Daddy. Say bye-bye Mommy!” Then Em made fish lips at me. Meaning she puckered her lips together and pretended to be a fish. This is what she does when she really, really wants us to acquiesce.
I began laughing. ”Em. I will take you anywhere. Anywhere you want to go. I’ll ask Daddy to explain the elevator game so we can play it together. Or you can show me how.”
“Go with Daddy,” Emma said very quickly and in a mischievous voice. Then she whispered again, “Daddy, Daddy, Daddy, just Daddy!”
So I sidled up to her and whispered back, “Emmy. Can I take you to the Natural History Museum? Just you and me? Please?”
Emma grinned and nodded her head. ”Okay, okay!”
When both the children were toddlers I took them to the Natural History Museum every single day, one memorable day we even went twice. After a few years of this, I announced to Richard, “I hope never to set foot in that museum again.”
“Uh-huh,” Richard said.
“Ever. Seriously.”
“Yeah. Got it,” Richard answered.
“Never. For the rest of my life.”
“OKAY! I hear you,” Richard said with a touch of annoyance.
So for the last few years Richard has taken Em whenever she has asked to go. I think I’ve gone once, maybe twice in the last several years. That I now find myself literally begging, BEGGING Emma to take her, is just another example of Emma’s brilliant negotiating skills.
If Emma ever loses interest in being a singer, I feel confident she will find any number of career options available to her… diplomat, anyone?
We are flying back to New York today. Last night as I was packing Emma called out for me. ”Mommy! Mommy!” Em has only just begun to do this – call our name if she wants us or is wondering where we are. It’s such a small thing, but every time she does it, my heart skips a beat. I’ve even caught myself holding my breath, waiting to see if she’ll do it again. It brings me such joy. ”Mommy!” she called, then waited to hear my answer. ”Hey Em! I’m downstairs!” I called to her. ”Mommy’s downstairs,” I could hear her saying as she came down to find me. (Another interruption. I know, but I can’t help it.) The fact that Emma came downstairs to find me is another thing that is fairly new. I could hear her footsteps coming down the stairs. ”Have to go see Mommy nurse,” Emma said as she plopped into a chair near me.
“Oh no Em. What’s wrong?”
“Belly go bang-bang,” Emma said, bending over and holding her stomach. (This is what Em typically says when she’s about to throw up.) ”You cannot punch. Have to go to the hospital. Go see hospital nurse.”
I looked at her and went through the following thought process - Oh shit. Could it be her appendix? What side is she holding? No, she’s holding the middle of her stomach, this can’t be her appendix, but what if it’s something serious? An ulcer, a tumor? Em doesn’t usually complain about aches and pains unless it’s serious. I then calculated how long it would take to drive her to the hospital, how long we would have to wait, how long it would take to get an x-ray, and then see an actual doctor to tell us the results… Finally having run through the entire scenario I decided I needed more information.
“Em. Where does it hurt exactly?”
She pointed to the middle of her stomach. ”Hurts here. Emma’s sick. Take temperature?” I felt her forehead, which felt fine. ”I’m cold. Emma has to stay home.” She wrapped her arms around herself and then said, “Emma can’t go to new school.” She frowned and pouted, while nodding her head. ”I know, I know. Emma’s sick. Emma has to stay home with Mommy.”
“Oh Emmy.” I reached my arms out to her. She came over to me and rested her head on my shoulder. ”I know. Emma doesn’t feel well,” she said.
Just as she said this Richard’s voice could be heard calling out, “Hey Em! Want to go for a ride on the 4-Wheeler?”
Em jumped up from the chair and called back, “Yes!” Then raced out the door and bounded up the stairs.
Anxiety. Stress. Fear. And that’s just what I’m feeling… For Em it’s got to be even more complicated.
Because Em has just brought in the timer and set it for ten minutes, this will be quick! Kind of like speed posting. (Post on Markram interview will have to wait yet another day!)
I posted the following conversation on Emma’s Hope Book page on Facebook last night.
Driving home from the swimming pool. Nic and Em in the back seat.
Nic: Em stop it.
Em: Cha, cha, cha
Nic: Mom! Make her stop. She’s doing that just because she knows how much it annoys me!
Em: Cha, Cha, Cha
Me: Turning around to monitor the situation Okay, Em. What are you doing?
Nic: She’s trying to bug me!
Em: Grinning Cha, cha, chocolate milk!
Me: Oh my god, that’s hilarious. Richard! Putting my hand on Richard’s shoulder. Did you hear that?
Richard: What? What happened? Looks in rearview mirror.
Em: Laughing Cha, cha, cha, chocolate milk
Nic: She just changed it so you guys wouldn’t make her stop!
Em: Leaning toward Nic, gets right in his face Cha, cha, cha, chocolate milk!
Nic & Em begin laughing hysterically.
Not only was the above conversation noteworthy because this type of interaction between Nic and Emma is not typical, but it was also worth mentioning because of Em’s increased interest in word play. I see this in her desire to play Duck, Duck, Goose where she comes up with different word associations. Sometimes, as in the case of “China boat, china boat, ocean!” I’m not clear what the word association is, but I no longer doubt that there is one.
Yesterday Em asked to go to Victoria Gardens, the amusement park, that each summer transforms the ice skating rink in Central Park into a kid’s idea of heaven. ”Sure, that’s a good idea,” I told her.
“Take the F train,” Emma announced and began to walk purposefully toward Sixth Avenue. ”But the F doesn’t take us to Columbus Circle. Why don’t we take the 1?” ”Take the F train,” Emma said matter-of-factly and continued walking toward Sixth. Once on the train Emma found a single vacant seat in the crowded car and said, “Oh no! There’s no seat for Mommy! Mommy has to stand.” The man sitting next to her immediately got up with a guilty expression and offered me his seat. ”Oh no, that’s alright. It’s no problem,” I tried to assure him. But he refused to sit back down, further humiliated, no doubt, by Emma’s interjection of “Oh Mommy cannot sit down next to Emma!” (Clever girl, I thought to myself, and I’ll admit, with a tiny bit of pride.) Even though that poor man who gave up his seat had no way of knowing that Emma actually prefers I stand and not sit next to her. It’s become something of a game, with Em saying in a pretend sad voice, “Oh no!” but then when I sit next to her she pushes me or tries to get me to sit across from her. (Making me all the more determined to get Emma some theatre training.)
When the train pulled up to Rockefeller Center Emma stood up and said, “Have to take the D train.” I know enough not to argue with Emma because there are a number of things Emma knows better than anyone and one of them is how to navigate the labyrinthine maze that is the New York City subway system. Except that when we arrived at Columbus Circle Emma stayed put. ”Hey don’t you want to go to Victoria Gardens?” I asked. Emma grinned at me and said, “Go fast!” Then she shook her head and said, “Train goes fast, fast, fast?”
“You want to stay on the train?”
“Yes!” Emma said. So we did. As we sped past each stop Emma shouted out, like the seasoned guide that she is, a specific playground or significant landmark. ”Oh, there’s the American Museum of Natural History! Oh there’s the tar playground! Oh there’s the …” We raced along until 125th Street where Emma then led me off the train and walked over to the tracks heading back downtown. ”Where to now Em?” I asked, having decided after we left the house that Em was going to direct the day, I was very much the passenger along for the ride. And what a ride it turned out to be.
We eventually made it to Victoria Gardens, but not before we stopped at another large playground and ran through various sprinklers, went through a tunnel, listened to a musician playing his Saxophone, past the artist who’d set up shop face painting small children to look like fairies, goblins and ghouls.
After several hours at Victoria Gardens we took more trains downtown, transferring so many times I can no longer keep our route in my head, but ending at Seal Park where I ran into one of my close girlfriends and her son. Another hour and then Em said, “Now go to Chelsea Market!” Off we went, with Emma lacing her arm through mine and occasionally she’d press her soft cheek against my upper arm. Emma talked about the new school she will be attending in the fall, she listed all her friends, teachers and therapists, “Justus is gone, Sol is gone, Charlie is gone, Lauren is gone, Miriam is gone. Emma goes to new school!” (I’ll write a separate post about that another day.)
Upon our arrival to Chelsea Market Emma raced to the water feature and began to point at various things that she wanted to know the name of. We discussed how there were wooden planks on the floor and what was under those planks – maybe a hole, darkness, who knows? She tested the plank by sliding her foot through the guard railing and pressing down on it. She pointed to the water gushing from a large pipe overhead. We discussed where the water might come from, “Ocean” was Emma’s guess, and it did have a briny smell, either that or the Lobster Place and Seafood Market just opposite was giving off the distinct scent of salt water and fish. Emma pointed to the large pipe and we walked around to the other side, following the pipe. A huge wheel hung from the pipe and Emma said, “I can’t reach! Have to get a ladder to turn the water off.”
This conversation with Emma was revelatory for many reasons, but most importantly it was the first time I have had such a lengthy conversation with her about something that did not have to do with a want, desire or need. She was curious and though she spoke cryptically throughout our conversation leaving me confused as to what she was saying or asking, it was fantastic. ”Plank fall in,” she said at one point pointing to the water.” And then again pointing up at the pipe, which I didn’t understand, making me wish I could put the pieces together. I have been unable to find out any more about the water feature at Chelsea Market, having spent some time on google when we returned home. I tried to find out the source of the water, does it ever get turned off, is it recycled, etc. so that I could tell Em more about it. She was curious, engaged even mesmerized.
Eventually we headed back home, but not before we stopped at one last playground to run through the sprinklers!
When we arrived home, Em said, “We have to call Daddy!” It was just one more first in a whole day filled with them!
Emma came home yesterday afternoon and showed me this.
“Pink,” she said proudly. Jackie had taken Emma for a manicure. And not only had Emma sat still for it, she liked it! I’ve been giving Emma manicures and pedicures since she was a baby. She likes having her toenails painted, but never her fingernails. This was a first!
That afternoon we took the children swimming. While Nic and Richard threw a football back and forth, Emma and I sat in the shallow end and Emma said, “No Sarah cannot throw the bottle. Sarah! You have to leave the room! Sarah is sad.” Emma then looked very sad and nodded her head.
Suddenly I had an idea from my conversation with my friend Ib, who has told me about her theatre training and how much that’s helped her. I couldn’t figure out how to get Emma to act out the emotions she was saying, so instead I said, ”Hey, Em, I’m going to pretend to be Sarah, okay?”
Emma nodded her head and grinned. ”Yeah, Sarah is sad,” she repeated.
I began to pretend-cry.
Emma watched me for a second with a little frown on her face and then she said, “Soufien is so angry! Grrrr!”
I shook my fist and pretended to stomp my foot under the water while grimacing, “Oh! That makes me so angry!”
Emma smiled, “Justus is happy!”
We went on like this for almost twenty minutes with Emma attributing an emotion to a child in her class and me acting out the emotion, though I did stumble a little on “shy.” These are all emotions Emma has read about in the book – The Way I Feel – by Janan Cain. Emma adores that book. We’ve gone through at least three copies of it over the years. But what is interesting is that Emma was taking all the emotions described in the book and applying a child she knew to each of them. I don’t know that I’ve had a back and forth interaction with Emma that has ever lasted this long. It was incredible.
When we got home, Emma donned her pink bathing suit, which also happened to match her pink fingernails, and ran through the sprinklers until it was time for dinner. (Notice Emma’s string, which has resurfaced and she has added to in the past month.)
Today the Aspen Ideas Festival begins, so things will be a bit hectic for the next six days. But I will continue to post here.
I have a relatively new friend. We’ve been talking a few times a week. She makes me really happy because she’s funny, smart and kind. You know that magical feeling when you connect with another human being? Someone who is special? It’s a deeper bonding than with most people, you can’t explain why that is, you just feel it and it’s mutual. I feel safe enough to confide in her. I’m pretty sure she feels the same. When we aren’t talking I think about her. I wonder how she’s doing, is she okay. And then one of us reaches out to the other and we start talking. Only with my friend we don’t talk in the conventional sense, we type back and forth in real-time. My friend reads very quickly, she’s hyperlexic; if I mention something that she hasn’t read, she’ll zip off and do a little research while I’m still typing out a sentence. Then she’ll reply with the knowledge of someone who knows, but didn’t in the previous sentence. It makes for an interesting conversation.
As a teen she had alexithymia. Meaning it was difficult for her to use words to describe the emotions she was having, as well as understand other people’s emotions, which combined with her literalism, caused a great many problems. So yesterday she was telling me about how she used echolalia and physical actions as a way to connect, but it didn’t always work out so well. People misunderstood her. And I thought of Emma. Because Emma doesn’t have the language to describe her more complicated feelings. So when she wants to connect, she’ll hit or she’ll say, “No, you cannot pull Mommy’s hair.” Which means that she’d like to, but she knows she shouldn’t. At her school she pulled her friend’s hair and was punished. Emma knows this is something that while she enjoys doing it, the recipients often do not. That must be very confusing to her. Emma will say things like, “No you cannot pinch Mommy.” Then she’ll look at me with a mischievous look and will wiggle her fingers at me as though she were about to pinch me.
“No Emmy! Don’t pinch Mommy!” I tell her.
Emma thinks this is the height of hilarity and will say again, “No. You cannot pinch Mommy! Pinch Mommy!” and then as though the feeling is too powerful for her to control, she will.
“Ouch!” I will say. And Emma will double over in laughter.
Last night we went out to dinner in town. It’s very warm here, so we sat outside. One of Emma’s favorite games is to pretend to give me a shot. She “washes” my upper arm by rubbing it with her hand and then pinches me. “Swish, swish,” Emma said, while pretending to put a band-aid on my arm. “Now you do it,” she said, covering her eyes with one hand, while offering me her arm. We play this game often. It is also her way, I think, of working through her fear of having a shot or the finger prick they sometimes do at the doctor’s office.
Yesterday as my friend and I were talking I realized something else. Emma is doing these things, punching, pulling hair, pinching, because she wants to connect, she wants to get a response, she wants to interact. It’s not just a one-sided gesture. She is trying, in the only way she knows, to make contact. Sadly her gestures are often ignored or she is told no, she cannot do that, so she is then further limited. She doesn’t have the words, she cannot always make sense of what she’s feeling, but she really wants to interact, to develop a method of “talking” with another person. She’s doing the best she can with the limited tools she has at the moment.
I realized I needed to help her find physical ways to connect that will not be perceived as “harmful” by the other person, but that are also meaningful to her. I will have to speak with my friend about this, because she will undoubtedly have some good ideas, besides I haven’t spoken to her in at least 16 hours and I already miss her.
Last night at the restaurant, Emma wearing Richard’s hat
