Tag Archives: non fluent speakers

Tomorrow’s Presentation

Emma and I are giving an hour-long presentation tomorrow at the ICare4Autism Conference.  We have been discussing our presentation and while I would be most comfortable writing everything out and basically reading from index cards, Emma has proposed that we do a much looser, more fluid type of presentation, one where I introduce us and then she will type some thoughts about the topic she chose, My Body Does not Obey My Mind, I will respond, she will type something else and on it goes, ending with questions from the audience.

Emma wrote, “How about making this presentation more meaningful by having me talk and then writing an answer to a question and showing them what we mean when we use the words “body/mind disconnect”?

I asked her if she was okay if I brought up the topic of stimming too.  Emma wrote, “Maybe we start with something less controversial like nice questions about the weather.”

I said, “You mean I ask you a question about the weather and then wait for you to give a spoken answer? And then after you’ve said something, you will type an answer to show the difference in real-time?”

Emma replied, “You ask me a simple question like – How do you like the weather today? – because talkers like that sort of thing.”

So to practice, I said to her, “What do you think of the weather today?”  Emma said, “Pool!”

“So that’s a good example, right?” I asked.

Emma then typed, “Beautiful blue skies with whispering air that rustling leaves answer.”

I said, “That is such a perfect example of what you’ve been talking about.  What else?”

“Vanity will be put aside so that others may learn,” Emma wrote.

When I suggested I write what I would say in response, Emma wrote, “How about you talk about how my talking voice confused you and made you think what I said was my intention?”

I told Emma this way of presenting is nerve-wracking for me, but that I think it will make for a far more compelling and powerful presentation.  She then typed, “You can lean on me.”  I told her I will be practicing mindfulness and breathing to relax.  Emma wrote, “Good work, Mommy.  I will be right next to you lending support.”

I’m counting on it, Emma.  I’m counting on it.

Emma and Me

Emma and Me

A Traffic Jam and an Analogy

Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city.  (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center.  You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.)  We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at all.

When we pulled up, Soma was waiting, we were exactly two minutes late(!) so we jumped out of the car and raced in to begin Emma’s session.  Emma wrote, “What happens if traffic never gets moving?”

Pause.

“You are stuck in a rut.  It’s like autism.  When you have the diagnosis you are stuck in stims and cannot proceed where your actions want to be.  It is always clogged like a caged mind driving through traffic.”

This morning I asked Emma if we could talk more about this as I’ve not heard her talk about autism and stims in this way before.  In fact, Emma has referred to stimming as self-care ‘here‘ and ‘here‘ and I wondered if she’d be willing to talk a bit more about this with me.  She wrote that she would.  She wrote, “Circular stimming begins in self-care and can aid focussed mind, but samples hasty stress when consumed by the stim.”

“So what I hear you saying is that the stim begins as a way to self-care, but can also become the cause of stress.  Is that accurate?”  I asked.

“Understand that I cannot always filter all that is going on easily.  My string grounds me.  Not having it can cause horrible stress, but it can also distract me.”

I asked Emma if there was anything that another person can do that would feel supportive and encouraging, but that might also make that struggle easier.

Emma wrote, “Don’t force me to put it away, but instead gently remind me to stay in the task asked.”

“Is it okay to suggest you hold the string in your left hand or wrap it around one hand so that you’re still free to type?”  I asked.

“It is nice to be helped with kind suggestions, not nice to be stripped of any say in what is being done.”

“Okay, I totally get that,” I said.  “With Soma you wrote, “What is wrong with the world?”  Then you answered your own question by writing, “In fact nothing is wrong with the world.  We are the problems.  We are not right.  We see things and create a problem.  I don’t have autism label on my forehead like Soma’s dot.”

(Emma was referring to Soma’s “bindi” the red dot Hindi Indian women often wear.  Soma, being Soma, made a joke and did not take offense.)  Emma then wrote, “But I have to walk around all my life with this label.”

I asked Emma if she’d talk a bit more about this and asked, “Do you feel if you didn’t have a diagnosis, people would treat you differently?”

“People see me, think she is different, forgetting that I have feelings like they do. If people understood what autism really is, it would not matter, but people don’t, and so it makes life much harder.”

“So it isn’t the label or the word “autism” that bothers you as much as what that seems to mean to so many people?”

Emma wrote, “This is the biggest problem and causes mistreatment and misunderstandings.”

“Thank you so much for clarifying all of this Emma.  Do you have anything to say to parents and educators who are trying to understand?”

“Keep your open mind and listen to the people who are Autistic for information about autism,” Emma wrote.

Soma and Emma ~ June 12, 2014

Soma and Emma ~ June 12, 2014