Tag: communication

Oh, there you are!

It’s been too long, old friend.  I’ve been taking a hiatus from, well, everything.  If you know me in real life, you know that I’ve been trying to get to the bottom of what’s happening for me medically.  Though there aren’t many definite answers yet, I’m working with a great doctor.  I can boil it all down to the fact that typing for too long is challenging for me, and I’m working on solutions. Accessibility to the rescue!

Speaking of which, I want to talk today about a really important tool in the world of accessibility.  This is the Picture Exchange Communication System, or PECS for short.

PECS are small laminated cards, each with one image and the corresponding word.  Typically these are kept in a small binder with the assistance of hook and loop (Velcro®) strips.  When someone does not communicate verbally, they can use these cards to request specific items or to carry on a conversation.

PECS
An example of a sheet of PECS cards

PECS have morphed over the years and there are programs and apps on devices which allow people to carry limitless PECS items right on their phones or iPads.  For some people, the touch screen of an iPad can be easier.  For others, the old tried and true method of holding a card in their hands or looking at the card in their book works best.  It really varies, and multiple methods should be tried.
This shouldn’t be mistaken for a Picture Schedule, and I’ll talk about those in the next post.

I am fortunate to work with some really incredible people.  One of the people I work with has been utilizing PECS with some people who have limited verbal communication and who often get very frustrated. Well, wouldn’t you get frustrated if you couldn’t express yourself in the way everyone else does, and decisions about your daily life were made FOR you but not WITH you?  Yeah.  You really really would.

A little exercise:  Close your eyes… well read this first and then close your eyes.  Imagine that you do not speak.  Imagine that you have people come and go throughout the course of your day, all of whom are telling you where to go and what to wear and what to eat.  Imagine that these people are not giving you time to make choices- they may ask you if you want to go to this place or that, but they never give you the opportunity to process the question.  Now imagine that they get frustrated with you for not answering right away.  Imagine how frustrated you might be if they gave up and took you to the place where you didn’t want to go.

Now imagine this:  The same person asks you where you whether you want to go to the park or the museum. She also shows you two pictures: one of your favorite park, and the other of the museum.  She then waits for you to look at the two pictures, and gives you time to decide.  You then point to the park, she asks you again “Do you want to go to the park today?” and you nod.  And off you go, to the park.

How different did those two scenarios feel?  In the first, you were not given all the tools you needed to communicate- not just the cards, but the time and the patience to consider your options.
In the second, you were provided all the tools.  The person giving you the choice allowed you the time needed.  She showed you respect and treated you as she would anyone who communicates verbally, she was not impatient, and she reaffirmed how the cards work by then taking you to the park as you’d requested.

PECS provide not just a method of communication, but they also provide information.  By showing a picture and a word, and by being followed up by the thing being requested, the cards teach that the person using them has autonomy.  And I don’t mean that the person using them is the only one who learns this.  The people working to support that person also learn it, and this is important.

So back to the person I work with… I got a little bit derailed there in an effort to get you to see and feel what I’m talking about.

Recently I watched the almost instant success that PECS can bring (again, not necessarily for everyone, but if an iPad app has not been successful then they’re worth trying!).  One of the people visiting our office reached a point where he was feeling upset and a bit cornered and definitely overwhelmed.  There was work that could have been done ahead of time that might have prevented his meltdown, but that work had not been done to prepare him for what was going to happen.  So we worked with him the best we could, and my coworker grabbed his PECS cards.  She showed him the one for his house and the one for the building where we work, and asked him where he wanted to go (she used the names of the places as well).  We gave him time, and we let him start to calm his body and mind.  She asked him calmly one more time, and he pointed to his house and off they went.

That was a really important moment, for all of us.  The person who brings him out into the community was amazed at how quickly we were able to help him regulate and calm his body, and how the cards worked despite the fact that the same question had been asked multiple times (without the cards).  They work, simply put.

And yet, they’re an under-utilized, under-appreciated tool that supports people with non-verbal communication as well as supporting those who are working to give people the tools they need in order to communicate.

We must meet people where they are, rather than expecting them (unrealistically) to come to us and then getting mad when they can’t.  Sorry, sweetie, life doesn’t work that way.  Let’s make communication more accessible- the tools are there, we simply need to try them!

Oh- and by the way, this is how Wonder Boy communicated for a couple of years.  It changed our world.

He advocates

I remember a time in the not-so-distant past when I wondered to myself when or if I would hear my youngest child speak in sentences.  If I’d ever hear the soft “I love you, mommy” or have a conversation in spoken words with him.

It took me a great deal of time and effort (and study) to come to the realization that communication can happen in many forms, and that you can never truly know what the future may hold.  As it turned out, he would speak, and there are days now where I wonder if I’ll ever enjoy silence again…

Part of communication is advocating for one’s needs.  We’ve become quite accustomed to the ways in which he advocates, and today provided a perfect example.

He walked across the living room today while the room was mostly silent.  He grabbed his headphones, a pair of black and white noise-muffling over-the-ear headphones which do a fairly nice job of reducing nose levels in a room.  In this case, the room was already pretty quiet, so I’m going to assume that he was seeking the gentle squeeze, the proprioceptive input that the headphones also provide (his first method of advocating for what he wants and needs).

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The headphones have a panda face on each ear, and are just so sweet that I asked him if I might take a photo.  “No”. “No?” “No.”  And that, my dears, is that.  No.  He did not wish his photo to be taken.  (his second advocacy)

He then asked for a snack, and guided me through exactly what he wished for.  This isn’t so much advocating as requesting, but you could count this as well.

It takes being truly comfortable with your space and who it contains to be able to do what he did, and I am forever grateful for the fact that he knows without a single doubt that his voice will always be heard, his communications will always be taken into account, and his requests always considered.

Yesterday, I took both boys to their first dance class- a movement class for kids with special abilities.  I was so excited that he wanted to try it out, and they had a wonderful time.  We saw a girl who had been in Wonder Boy’s preschool and it was remarkable to see how much she’d accomplished since those days.
When we were getting ready to leave, WB said that he did not want to sign up to return.  While I was saddened by that, I also have to respect that he made his wishes quite clear to us.

We must always consider people’s needs, no matter how they communicate but especially those who are not able to communicate verbally- look for other ways in which someone is speaking to you, whether that be in actions or in response to your actions.  Take time to meet people where they are, rather than force your methodology and your ideology on them.  And for the love of pete, respect people.