camp conundrum

Camp starts in about a week.  Adrian went last year and loved it.  It’s really an awesome program.  His school runs the camp for the summer program.  He still gets his speech therapy and his OT, still works on his goals and many of the same teachers and support staff work there.  It’s a genuine ‘camp’ setting.  They spend the entire day outdoors, doing crafts, nature hikes and swimming. It’s really a unique program that I’m grateful we’ve got access to.

But this year I’ve got another concern. Do we send Adrian’s device to camp or not?  Sure, I can think of places he could use it.  He could use it to request a push on the swing, a drink when he’s thirsty or even to ask a question like ‘When do we go swimming?”  He could use it to continue to pursue his goal of reading/typing words.  There would be a lot of good ways for him to use it at camp.

Yet, sending the device poses some problems.  They move about the camp all day.  Does Adrian bring it with him everywhere?  How?  Does that increase the likelyhood that it will be lost or broken?  Obviously, bring it to the pool is a no-no, but who’s going to ensure it’s kept well out of the way?  Even on the playground, will the device be put on the ground while he plays?  Is that safe?

This device represents a lot of money and a lot of time.  Do the benefits outweigh the risk in this type of environment?  I’m not sure yet.  But I’ve got to make up my mind pretty quick.  Any thoughts or suggestions would be welcome!

Can You Feel the Love Tonight?

I’ve heard that some kids with autism have a difficult time identifying feelings and experiencing empathy.  Adrian’s teachers and therapists in the past have spoken as if he might have that problem.  I don’t agree.

Adrian is very sensitive to the emotions of the people in his environment.  If another child is very upset, Adrian will often get upset too.  When he sees Zee putting on a ’show’ with fake crying and pitiful facial expressions he usually laughs at him.  He seems to be able to tell when the feeling is real and serious versus fake and inconsequential, and he responds accordingly. 

One of the first pages I gave Adrian in print and on his device was a ‘feelings’ page so he could express how he was feeling.  Most who have seen it think he could never connect the images to the feelings.  It’s too abstract for someone with autism.  But, I think they’re wrong.

Adrian has used the feeling page in the past in an appropriate way.  He can do his signs for emotions to go with each of emotion icons.  He makes the connection between the emotion, the sign and the icon.  He gets it.

Today Adrian was watching ‘An American Tail’, you know, the movie about the little mouse getting lost on the trip to America with his family.  Adrian watched the part where the little mouse is lost and the father is agonizing over it.  He made the sign for sad – complete with frown.  He understood that was the emotion the father was feeling right then and communicated it. 

It just reminded me that the autism stereotype doesn’t support this and made me think of all the folks who have assumed Adrian doesn’t understand emotions and doesn’t have empathy.  I’m sure Adrian isn’t the only one suffering from this stereotype.

Shut Up! I’m being age appropriate!

An interesting feature of the Dyavox V’s preprogrammed phrases are some of the ’age appropriate language’ they included.  I went to a workshop where they explained how they felt that kids with disabilities needed access to the same language that other kids their age used.  While I’m all for that, the “Shut Up!” and “Mine!” buttons were a little shocking to hear.  They went on to remind us that everyday speech is not as formal as it’s sometimes programmed. “Could you please pass the butter?” should be “Pass the butter” in a more casual setting. Ok, I can see their point.

When Adrian’s device arrived I had to decide if I should leave some of these ‘age appropriate’ phrases on or remove them. I thought perhaps I was simply not being open enough in my thinking. Was it my own comfort level keeping him from engaging in more age appropriate speech?

Then all the sudden it dawned on me.  This is not language that I’d allow my other kids to use!  This is not ‘age appropriate’.  This is inappropriate no matter what your age!  We don’t say things like “Shut up!” around here, why should we be encouraging Adrian to do it?  The three year old might occasionally say “Mine!” but he’s quickly reminded that it’s not appropriate and he needs to go about asking for his item in a calm, polite manner.  I feel that our job is to teach Adrian appropriate communication skills.  How can we expect him to do that if we’re giving him inappropriate choices?

As far as the casual language goes, I see the point about shortening the phrase to make it more casual.  But in the examples they gave, they almost always removed a key word in our house – “Please.”  For our other children, it’s not optional.  Adrian’s no different.  He knows and uses the sign for please as well as making a pretty good vocal approximation.  I program a prominent “please” button on each page that makes a request… and we expect him to use it!  Casual language need not be rude.

I think the fact that these choices were put in there shows that our society has a lax interpretation of ‘age appropriate’ language in general.  I’m just glad I can re-program these phrases to be polite and respectful.  To me, that is age appropriate.

Words of the Week

We’re a couple of weeks into using the device and Adrian is regularly using it here at home to make requests and make things known to us.  Here’s a few of the ways he’s used it recently….

• Dad was getting ready to make breakfast and was asking the kids if they wanted pancakes.  Before the device, Adrian had no way to participate in such a discussion.  He has an approximation for the the pancake sign but it’s indistinguishable from waffle, school and other clapping motions.  This time, Adrian made his opinions known by using his device to say “I want pancakes.”  The other three made it unanimous and pancakes were had by all
• We went out to lunch one day while Adrian was at school.   When he arrived home, he noticed the leftover box in the fridge.  He used the kitchen scene to click on the fridge and say “Look in there.”  I was surprised by how quickly and smoothly he did this.  He knew exactly where he needed to go to get his point across.
• Tonight, after Adrian’s bath, I was short on clothes upstairs.  I gave him an old pair of shorts to wear till I could make it down to the laundry room to get him something else.  As so often happens to me, I got sidetracked and never made it to the laundry room.  A short while later Adrian came to me and tried to make a sign I’d never seen before.  I pointed to his device and he went into ‘my words’.  It’s just a selection of vocabulary sorted by category.  He’d never used this button before so I watched carefully to see where he was going.  He went into clothing and pressed ‘button’, then he pointed to his shorts.  I remembered I’d forgotten to get him something more comfortable to wear!  When I got it for him, he laughed and laughed.  Without the device, it would have taken me much longer to figure out what he was trying to say.

Electronic Books

I’ve been programming, programming, programming.

As part of his reading exercises, I created two electronic books for him to practice with.  They’re the simple, ready-to-read, step 1 books. We chose “Blue’s Beach Day” and “As You Wish”, which showcases characters from Aladdin.  These were books Adrian enjoyed looking at so he was highly motivated to view them electronically.

Each page requires that Adrian type in the last word and punctuation at the end of the sentence in order to turn the page. If it’s not correct, the page won’t turn.  We’ve had success with this in the past.  In fact, I had to increase the number of words it required him to type.  For now, I’ve set it back to one word until he gets going again.

I’ve also been trying to figure out how else we can start to ‘test’ Adrian’s reading skills.  We know he’s reading more words than we thought.  I just need to write a program that helps us determine what he knows and what he doesn’t, while allowing him to practice reading, typing and matching skills.  I’ve got a few ideas… just need to hash out the programming details.

I’m sure there are some out there who would argue against using this ‘communication device’ for things like this. I disagree.  One of the important things Adrian needs to be able to communicate is his knowledge.  Adrian can’t submit to traditional testing so figuring out what he knows and what he doesn’t is difficult.  This allows Adrian to communicate his knowledge.  I’m all for using whatever motivational techniques we need to to encourage that. 

In the end, these types of activities allow us to make his educational program as relevant and challenging as possible.  They also give him practice in the skills he needs to develop in order to communicate better – reading, writing and typing.

Good News from Our Speech Therapist

Good news from the speech therapist today.

First, she had a chance to look at the programming I’d done and yes, she liked it.  While I didn’t need her ok (Adrian’s use of what I’ve made is satisfing all by itself), I must admit I’m glad to have her stamp of approval. 

Last time I programmed Adrian’s device I got some oohs and ahhs from various teachers and therapists.  But I didn’t really trust them.  The folks giving them really didn’t have a lot of experience with devices like these so they might have been impressed with anything I’d done. 

But our speech therapist now, well, I trust her.  She’s programmed devices before.  She’s good at what she does.  I’ve seen her in action and have a great deal of respect for her professionally.  So when she says it’s good, my work is validated, my insticts proven trustworthy.  And trustworthy instincts are invaluable in my line of work.  With a non-verbal child, sometimes instincts are all I’ve got to go on.

 Ok, enough of my insecurites… on with the other good news.

Adrian’s class had some down time between activities during which they were encouraging the kids to sit and relax while waiting.  The speech therapist suggested to Adrian that he play his Lion King song.  (Id programmed a few of the buttons to play his favorite Disney songs. )  He surprised her by easily navigating to the correct page and playing it for the whole class to hear.  She said everyone listened to the song and when it ended, they clapped and cheered for Adrian and his wonderful device.  She didn’t say how Adrian reacted, but if I know my boy, he probably laughed.

She’s been working hard with Adrian on using his device to type in words.  This activity helps him work on his typing and reading skills while using his device to speak the words for him.  This is very similar to what I did with Adrian a couple of summers ago.  We used the Personal Communicator software availible from Michigan State University.  He would type in the word on the card I gave him and the program would show video of someone signing it and also speak it at the same time.  It was a highly motivating activity for Adrian.  I highly recommend this software.  It’s easy to use and very reasonably priced.  As soon as the computer portion of our DynaVox V is opened, we’ll be installing this program!  I just came across the flash cards with the words the other day so I think we’ll start to practice these at home as well.

Later, little bro!

“Adrian.”

“Adrian!”

“Adrian, come here.”

“Adrian, come with me.”

“Adrian, do this”

“Adrian, let’s go over there”

We hear these and other phrases like it all day long!  Zee just loves Adrian and thinks, like most 3 year olds do, that big brothers exist just to play with little brothers.  Adrian is easily 3 or 4 times Zee’s size and could just ignore the pip-squeak’s requests…. but more often than not, he doesn’t.

Most of the time, Adrian goes along with whatever Zee says.  He goes along and giggles at Zee.  Sometimes there are advantages in it for Adrian too.  Adrian loves to play chasing games.  The rest of us play those games too, but we get tired.  Zee has as much, if not more, energy than Adrian.  He can play on and on till Adrian collapses on the floor out of breath. 

They both enjoy playing with trains and animal figures.  Adrian loves to watch Disney movies on the computer and Zee is one of the few who can sit there next to him and not even mind that Adrian keeps flipping the movie back to the same part again and again.

Sometimes the two of them together is trouble.  Once I caught Zee using Adrian’s height for his own purposes….

“Adrian.  Adrian, come here. (whispering) Up there, Adrian.  (Adrian reaches to the high cabinet where the treats are kept) Yeah.  (Adrian opens the cabinet) That one, Adrian. (Adrian puts his hand over a box of cereal) No, not that one. That one. (He moves his hand over the box of Teddy Grams) Yeah, yeah, that one.  Get it.  (Adrian hands him the box, giggling the whole time)

I watched all this happen from a distance.  They didn’t realize I was watching them.  At this point I stepped in and gave Zee a talking to.   Apparently it didn’t work because later that week I found an empty box of Teddy Grams in the living room.  I’m guessing a similar scene happened and they shared the loot.

I’m watching and listening to everything in Adrian’s world closely right now.  There are so many things Adrian doesn’t have the ability to say that he might like to.  Some of them might be “Zee, leave me alone”  or maybe “I’m busy right now” or “I’ll play with you later.”  Adrian usually goes along with what Zee says to do.  We don’t know if that’s because he really wants to or if maybe he just hasn’t had a way to tell Zee he’d rather not.  I guess there’s only one way to find out…. back to programming

Swingin’ in the Rain

The car is at the shop and they hope to have it done by Friday. 

I don’t really miss driving Adrian back and forth to school.  It takes 20-25 minutes to get there, a few minutes to drop him off or pick him up and 20-25 minutes to drive home again.  That means I spend about 2 hours of each day driving and picking him up.  It wears on you after a while.

I don’t think Adrian minds having a couple of days off either.  He’s been playing on the computer and playing with figures and cars with Zee.  It’s rained most of the past three days, but that hasn’t deterred him from using his new device to tell us he’d rather be swinging.  Of course, he knows it’s raining and we can’t, so giggles usually accompany the request.  I showed him where to locate the weather vocabulary and he quickly noted it was “rainy, rainy, rainy.”

The rain stopped briefly today, he noticed and asked to swing again.  So we waded through the wet grass and mud so he could get a little swinging in before the rain came back.  Hopefully sunny days are ahead.

I used some of the built-in ‘visual scenes’ to program things he might want to say about various rooms in the house.  These scenes show a picture of the room rather than a grid of buttons.  By clicking on various parts of the picture he can talk about those objects or activities. 

One new thing I’ve been showing him is the microwave.  Adrian sometimes leaves his food till it’s cold, then puts it in the microwave for us to reheat.  Problem is, sometimes we don’t realize he’s put it in there!  So I’ve programmed the ‘microwave’ to offer him phrases like, “It’s in there” and “Turn it on” and “Make it hot”.  

Adrian obsesses about the kitchen sink.  When the dishwasher is on, the sink will gurgle.  It drives him nuts.  To drown out the sound and stop the gurgle he turns the faucet on.  He also obsesses about the temperature of the tap.  The water has to be running cold – always.  If we turn the water to hot, he’ll run the cold water till the faucet is cold to the touch before turning it off.  To give him ways of talking about these things I’ve programmed the sink to say things like “sink noises” and “cold water, please”. 

Adrian has been exploring some of the newer pages here and there, trying out various buttons to see what they do.  Part of the reason a device like this is such a good choice for Adrian is because he’s so comfortable in the computer environment.  He seems to have an intuition about where to click to get him where he wants to go.  He mastered the icons at the top of the screen faster than I did!

Things are going pretty well here at home, I just can’t wait to get things swinging at school too

Ready to talk!

For the most part, the Dynavox V is up and running now.  Adrian has been exploring various pages here and there while I’ve been setting it all up.

For the most part, it’s all familiar to him.  After reviewing many of the pages available, I decided that we’d stick with my original design and organization.  I’ve added some extra pages here and there and used some vocabulary and pictures suggested in the pre-programmed pages. 

I’m anxious to see what the speech therapist will say when she sees it.  Unfortunately, I’m not sure when that will be.  We hit a deer with the car last Thursday and we’re still not sure when it will be fixed.  I don’t mind keeping Adrian home for a few days, but if the repairs take much longer than that, we’ll have to rent a vehicle.

Meanwhile, that means I’ve got time to continue to tweak the device and get Adrian back in the habit of using it.  Not surprising, I think he often forgets it’s there.  After all, when you go 10 years without a means of ‘talking’, you don’t automatically think about the fact that now you do! 

Slowly Getting Him Talking!

Phew! I’m breathing a big sigh of relief tonight.  I found how to transfer over the Boardmaker pages from the old device onto our new Dynavox V!  There are hundreds of pages, representing hours upon hours, weeks upon weeks’s worth of work.  Getting this device functional for Adrian should go much faster now….

 Uh, should.  I did already find one bug in the translation of the files.  I have one ‘program’ Adrian loves where he puts the numbers 1-100 in order.  So there’s a total of 100 pages to make up the ‘program’.  Well, our last device had a volume problem.  The only way to fix it was to use Boardmaker’s feature telling the machine to use the ‘loud’ voice.  When the pages were translated into the new device, it translated the command for the ‘loud voice’ into ‘volume up’.  So with each number he pushed, the machine turned the volume up a couple of notches.  It was funny… until I realized I’d have to change all 100 pages. 

Since it’s his favorite program, I took the time to correct all the right answers so he could use it.  He rarely makes a mistake anyhow.  Now it only yells at him if he hits the wrong number.  I guess that’s reasonable for now

He’s spent the majority of the day on the swingset screen asking to be pushed on the swing.  Even now, it’s 11 pm and he’s still saying, “Push me on the swing!” and giggling the whole time