In case I forget

I spent much of last week in the company of a new friend who is 83 years old and suffers from dementia. We had lively conversations about politics or countries we’d been to or food or stories of our lives, and then he’d tell me some of the same stories again and again. He knew his memory wasn’t “like it used to be” but didn’t realize the extent of its loss. And that may be a good thing, because he would have been upset to know how much of his witty mind was no longer there. At the same time, I could see how the memory loss elevated his anxiety.  He was surprised again and again by the same confusing documents on his desk, asking for explanations about them. He found the daily routines of blood sugar and blood pressure checks and medications baffling. He was anxious when his caregiver was not around, because he didn’t remember if and when the caregiver would be back. He was upset about the car that blocked his driveway, because he forgot that he didn’t drive any more, and that therefore the blocked driveway was not really a bother.

He was delighted when I responded to one of his funny anecdotes with surprise and amusement, but seemed apologetic when I said that yes, I know that, he’d told me. Going for a walk he’d enjoy the flowers, the sunshine and the neighbors he ran into. Returning home forgot that he’d been out, but the contentment remained.

It seemed to me that the feelings of delight, surprise, anger or anxiety lingered at times longer than the memory of what triggered them in the first place.

Not all of us will get to age gracefully. We may as well cherish our minds while we can still enjoy them, and do what we can to keep them intact. We can educate ourselves about exercise and diet and supplementation, and develop habits, if we haven’t yet, that will support our health. But even when damage is done, intervention can make a difference. I’m hoping that if I were to be as confused as my friend, that someone would take me daily through activities that I couldn’t remember to do, to support my balance, to enhance my dexterity, to engage my two hemispheres in coordinated movement, to reduce anxiety, to enhance memory, to experience joy.  

If you needed help to say what's on your mind

A couple of weeks ago I attended a training at Syracuse University on assisted typing.

If you’re not familiar with this form of communication, imagine for a moment that you can’t speak, and you can’t even type unless someone supports you – say, touches your elbow or shoulder while you type to help you focus, or pulls away your hand from the keyboard after every letter, so that perseveration won’t get in the way of your words.

If your loved one has not been able to communicate using words, whether spoken or written, have you assumed that he or she has little to say? Have you assumed that he or she understands very little?

I find HANDLE very compatible with assisted typing and other forms of facilitated communication, in that the basic premise is the assumption of competence. Yes, you may be wrong, but assuming incompetence can be a lot more harmful. The woman sitting across from me at the workshop received practically no education until she was 24. She now has a Masters degree on disability studies and serves on the Executive Board for the Autism National Committee (AUTCOM) as Vice President.

I can’t wait to practice and to learn from people who communicate through assisted typing as well as from my colleague Carolyn Nuyens who has been practicing this modality in California for many years. 

I’ve met half of the people whose profiles and stories are here. And here’s a blog by yet another person who uses assisted typing, sharing her thoughts about ABA and the “politically correct” term “person with autism”.

http://sydscarnivalofsouls.com/2015/03/21/amy-sequenzia-non-speaking-autistic-speaking/

There are people I know who have been silent for a long time. I'm eager to learn what they may want to say. I can’t imagine where I would have started if I had had to wait until my teens or adulthood before having a chance to say what’s on my mind. What would be the first thing you’d say? If you want to explore these possibilities for someone you know, send me a note. I may be able to help.

Have you noticed any changes?

This is one question I ask every client or family each time we meet. The answers vary – from “Math seems easier” to “M. is calmer” to “S. is able to enjoy being outdoors” or “O. seems more present and engaged.” Answering this question a few days ago, a young client claimed: “I haven’t changed!” Well, of course, I had to explain to her, there’s no need for you to change. You are perfect being just who you are. What I’m trying to find out is whether things have become easier for you.

This is not a matter of semantics at all. The client needs to feel confident that the goal of our work is not to transform him/her into another person. It really isn’t.

Think what can happen when “things”, whatever they are, become easier:

When you have a better sense of where you are in space, you can move with more confidence, engage in team sports more easily, sleep better, have fewer accidents.

When you can sort your fingers from one another, you are more likely to be successful in writing, drawing, playing music.

When your eyes work better, you’re likely to have an easier time with reading, with being active outside, with maintaining eye contact.

When you don’t need to spend so much energy protecting a sensitive tactile system, you’re likely to be able to dress differently, to maintain your grooming better, to try different foods.

When your vestibular system supports you better, your level of anxiety is likely to be reduced, your mobility enhanced.

Any of these systems, with better organization, can allow you to broaden your scope of interests.

Isn’t this what we are all looking for?

Well, maybe not all of us.

"My," the girl said. "What big ears you have!"

"The better to hear you with, my child."

"Grandma, what big eyes you have!"

"The better to see you with, my dear."

Earthquake

At 3:20 on Sunday morning I jumped out of bed, waking up from a deep sleep to the reality of an earthquake. I was far enough from where the earthquake actually caused damage, but during the first moments of uncertainty my mind was already racing: Safety/phone/keys/shoes/gas?/emergency backpack/I’ll miss my meeting across the bridge today/Get information/Send text/Escape or stay?

It took me a while to wind down. But I did. Part of winding down had to do, of course, with the fact that I was unharmed and that people close to me were also safe. But another part of it had to do with my state of mind: the conviction that I had some control over the situation. I had enough understanding of what was going on, and I could make choices regarding what I was going to do.  

Wait long enough and life is going to come up with earthquakes of some sort, big and small. Just like you can’t stop an earthquake from happening, many other events in life cannot be prevented or changed. But we can work on understanding and on developing choices. This is true for ourselves and for those who are under our care. It can be hard to explain things to people, young or not, whose communication skills are lacking, but it’s worth a try. They may understand more than we expect, and they may appreciate being addressed. And offering choices, even small ones, can often help a person feel less helpless, even if those choices cannot make the earthquake go away and cannot even lessen it. I hope you will share your experiences as comments below.

Sensation: The New Science of Physical Intelligence

Does the softness or hardness of the seat you sit on make you a softer negotiator or a harder one? Does touching something soft or something rough, something warm or something cold, make a difference in your judgment of a person shortly after that? Does turning on a lightbulb increase the chances that you'll get an "Aha!" moment? Research suggests that the answer to all of these is yes. Research even suggests that there’s a difference in whether or not you are likely to cheat depending on whether or not you’ve just showered. You have any guesses here? Hmmm, my guess was wrong.

Check out Dr. Thalma Lobel’s book “Sensation: The New Science of Physical Intelligence”, or watch her give a talk to an audience at Google, at www.youtube.com/watch?v=R33dwl9vjQs. This talk is a little under 50 minutes.

Our perceptions, decisions and judgments are very much influenced by our physical sensations. Our ability to come up with creative answers to problems is influenced by our immediate environment (try sitting inside a large box or outside of one). And much of all this is influenced by the experiences we’d had as children.

Future research will explore more in depth which of these influences are culture-dependent and which are not, as well as differences between age groups and between environments (e.g. will holding a hot cup of coffee on a hot day or on a cold day have the same impact?). Personally, I’m very interested in future research into individual differences. Specifically, one of the experiments described by Dr. Lobel, is that of participants who spent a while working on jigsaw puzzles, which either had very smooth or very rough textures. After completing the puzzles, the participants were asked whether they perceived a particular ambiguous dialogue as friendly or unfriendly, cooperative or competitive, a discussion or an argument. There was indeed a correlation – those who had experienced the rough sensations in their hands earlier were more likely to perceive the conversation as unfriendly, competitive and argumentative. And that made me think. What some of us may feel smooth and perhaps pleasant to the touch can feel scratchy and offensive to others who are more tactile sensitive. Not only do sensitive people have to deal with a more physically challenging environment, but these sensations influence the interpretation of the personal interactions around them which may not be related at all to the physical stressors.