Utter Autism

January 23, 2014

Too Big, Too Late

Let me take you back 12 years. Adrian was 5. They used the PECS system, where picture icons representing items or ideas are used to help non-verbal children communicate. But they also dabbled in sign language and Adrian would sometimes use that. All the while the speech therapists continued to work on his vocalizations trying to make that a productive way for him to communicate.

Even when Adrian was 5 we knew none of these methods were going to be ‘the’ answer for long term communication. Being techies, my husband and I looked to our home computer for help. We wrote a program that would offer him the pictures and play back recordings of us saying the word. He loved it and did use it. But even with a laptop, it was hardly convenient or portable. Though it did help us convince the school that Adrian could handle one of those fancy communication devices which more or less did the same thing.

Adrian had 2 different communication devices over the span of nearly a decade. Each took an insane amount of time and effort to get for him. Each lasted less time than it took to get through all the red tape to obtain in the first place.

A few years ago he added another tool to his communication toolbox. Writing. But like with the PECS system, technology has the ability to make this skill a better communication tool.

For years now I’ve handed Adrian my phone to type out his message. It’s convenient and effective. But I don’t believe the usefulness of such a device stops there. You can access everything from a sign language dictionary to pictures and icons. You’re a click away from programs that can easily turn words into audible sound. They’re more versatile, more portable, more functional than the fancy communication devices he’s used in the past.

So we set out again to try to bring more tech tools into Adrian’s capable hands. Funny how technology has changed so much… but the red tape has not. The school first insisted on a professional evaluation to determine if he could use a communication device. Uh, duh.

The red tape goes on and a year later Adrian gets an iPad on loan from the school. But after using it with him for one weekend I’m really wishing I’d pushed the evaluator harder towards a smaller device. While it’s certainly more portable than the devices he’s had in the past, it’s still a lot to tote around everywhere you go. And I look at my smart phone which can do most of the same things and wonder if it’s not a better choice.

The justification for the iPad over a smaller device for the evaluator was based on the fancy communication app that has 80+ buttons on a single screen. So it can’t work on a device smaller than an iPad.

But… do we even need buttons with icons at this point? The dude can write! Heck, teens his age are known for being able to text faster than most of us can type on a regular keyboard. Is finding the proper icon through pages of 80+ really going to be faster for him?

My conclusion? No, it’s not. Especially at the cost of the portability and ease of use.

I understand the how the speech therapists and evaluator think. There’s this idealized image of the student who uses these fancy communication devices and apps to speak whole sentences while their communication partner patiently waits. I too once imagined that’s how it would be for Adrian. Perhaps for younger kids that still not a bad way to try to go.

But Adrian is 17 now and he’s lived all 17 of those years learning the fastest, easiest method to communicate his needs to many different people in many different circumstances. He’s already developed skills to get his point across. He doesn’t need a device or app to come in and save the day. He only just needs one more tool that will supplement and augment what he’s already able to communicate.

While the fancy communication apps with icons are perfect for the younger set who haven’t learned to read or write, they’re just not the best choice for someone who can simply type out a few words to get their point across.

I plan to meet with the speech therapist to discuss all this in the coming weeks. I’m willing to give it a shot and see what she can do with these new tools… but I’m pretty sure I already know what the end result of all this will be.

The iPad will be a great tool in school, at a desk. But the residential staff and Adrian will balk at using it out in the real world because it’s just not practical. I know cause we’ve been there, done that.

But I’m less concerned about that now. I bought Adrian an iPod Touch for Christmas. It’s in a tough Otterbox case with a lanyard so he can easily carry it around his neck. And he does carry it. Staff reports they bring it on all their outings and he takes it with him where ever they go. I put the notepad app in a prominent place and recently loaded an app that turns text into speech. Once the staff and/or Adrian discover how helpful those are when he needs to say something… he’ll have the technology tool he needs for the real world.

January 16, 2014

Seventeen

Adrian just turned 17.  That’s still a little unbelievable to me.

He was home for his birthday weekend.  We took him to his favorite mall where he rode his favorite elevator.  We bought him birthday cake and sang to him.  He blew out the candle and opened presents.  It really wasn’t all that different from any other birthday. 

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Except the fact that when the weekend concluded, he went back to his residential school.  He no longer lives here with us.

But he’s seventeen now and it just feels ‘right’ to have it that way.  He’s not a little kid any more.  He’s a young man who has really grown and changed in the short time he’s lived away from us. 

I was reminded of that this birthday weekend when Adrian used his communication program to ask for a cheeseburger… right after we’d taken him to a restaurant where we’d ordered him chicken fingers.  Because he always wanted chicken fingers.  They were his favorite. He hardly ate anything else.  But it’s not that way now.  He eats many different kinds of food and he loves different things… and I forget that he’s not my little boy who loves chicken fingers. 

So the next day we went and he got his cheeseburger and I took a picture of him eating it… mostly because we still have such a hard time believing it. And then I took him back to his house.  I put away his man-sized jeans in his drawers and as I did he showed me pictures he took on his new iPod Touch of when he went to Dave and Buster’s with his housemates.  I didn’t know he took pictures with his iPod Touch.  I didn’t know he went to Dave and Buster’s.

When he got impatient waiting for me to hurry up and finish refolding his clothes he signed ‘ride’.  I put on my sad voice and told him that no, our ride was finished for the day.  The staff chimed in and told him not to worry, they’d be going for a ride to play laser tag as soon as his housemates finished their lunch.  He smiled at her.

Adrian kissed me goodbye and went back to his computer.  He never walks me to the door.  He’s happy to stay there.  He’s happy to be back in his house.  He’s comfortable with me not being there.

Cause he’s 17 now and it’s natural for a young man to want some independence from Mom…. and a cheeseburger 🙂

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July 13, 2012

Phone Home

Thanks to the miracle of technology we’re able to video call with Adrian in his new home.  Skype allows us to see and hear him as well as send typed messages.  The staff today helped Adrian call us and type some questions and answers.  Here’s the conversation:

 Adrian: hi mommy

Carol: hi Adrian!

Adrian: how are you

Carol: We are good.

Adrian : how was your day

Carol: we had a great day.  How was your day?

Carol: school?

Adrian: tis today

Carol: nice haircut!

Adrian: i had a fun day in school

Carol: it’s hot outside

Adrian: i went swimming

Carol: yay! swimming is fun

Adrian: we are eating pizza tonight

Carol: you LOVE pizza!

Carol: what kind of pizza?

Adrian: pepperoni

Carol: cool! yummy

Adrian: what are you guys eating tonight

Carol: echiladas – I know you don’t like those haha

Adrian: i,m going go play outside

Carol: goodbye

Carol: We love you!  Have fun!

Adrian: i love you

 

We’re so glad we can keep in touch with him this way 🙂

August 29, 2010

Back to Disney

Even as we continue to struggle with Adrian’s difficult behavior, we’re preparing for another trip to Disney World.  Adrian loves going to Disney.  This will be his 1oth trip in as many years. 

We’re banking on all that experience, both his and ours, to make this trip possible despite his outbursts.  Adrian knows the drill.  He knows where the airplane goes.  He knows the parks inside and out.  He even knows most of the roads in the Disney complex and where they all go.  All this familiarity helps keep his behavior mostly calm and predictable.  Or at least it has in the past.

We know from years past that overstimulation, heat and hunger are the biggest threats to his self control.  We usually handle heat and hunger by leaving the parks around 11 am.   We pick up takeout and take it back to the air conditioned cabin to eat.  Then relax there for a few hours to avoid the worst heat of the day.  A snack before we head out for the night helps make sure he’s good to go.

Overstimulation is a bit trickier to navigate but over the years we’ve developed several strategies that work for us.   The first is the wheelchair.  The whole reason we own a wheelchair for Adrian is because our first trip to Disney we stumbled across the fact that the strollers there helped him with dealing with the environmental stimulus.  Just having his own space to retreat to helped him deal with everything going on around him.  He eventually outgrew the strollers but we found the wheelchair functioned the same.  The added bonus was a buckle on the wheelchair kept him from running and helped him wait more patiently when we had to wait.  Wouldn’t we all rather sit than stand?

Next we found that noise deadening headphones provided relief and increased his enjoyment.  Even the rides he loves are so much more enjoyable when he’s not assaulted by too much sound.  Adrian’s gotten to the point where he knows when there’s too much noise for him and he’ll ask for headphones.  We’re happy to oblige.

The other major component to a successful trip is a means to communicate.  Our first couple of years we made an effort to teach and use sign language to give him a means to communicate.  It helped some but sign has never been his strongest means of communicating.   The past couple of years we’ve had the Dynavox but bringing that to the parks was too difficult.  So instead I printed up cards with screen shots of the Dynavox pages and laminated them.  Adrian was able to simply point to the pictures of the buttons for what he wanted.  Last year we skipped the ‘buttons’ and simply printed up a card with pictures of everything. 

This year Adrian is reading and writing so the picture card has been replaced by a list of written words attached to a small white board where he can write out his requests.  He already knows how to spell most of the rides, foods and activities he enjoys so the list is more as backup if he needs a bit of help.   He can also point to items on the list for a short cut but I’ll likely make him write things out since that’s an activity he finds calming and it takes up time where he might otherwise be getting fidgety.

As our whole family looks forward to our vacation, I’ve got my fingers crossed that this is going to be a great trip for us all.

May 29, 2010

Don’t Write Him Off

It was only about a year ago that I sat in Adrian’s IEP meeting and suggested to the occupational therapist that we should concentrate our efforts on Adrian’s typing skills and confine his handwriting practice to improving his signature.

It made sense.  In all these years, Adrian’s never shown any interest in writing things by hand.  He’s shown little improvement in his handwriting skills for all the time and effort put into it over the years.  We have the Dynavox, he uses some sign and he’s typing on the computer… why continue to pursue writing?

Leave it to a teenager to set out to prove Mom wrong.

In this one short year Adrian’s gone from not writing a word more than the occupational therapist required… to writing all the time. 

It started with his teacher and speech therapist working on functional vocabulary words.  They had him typing the words on the Dynavox but when he showed interest in writing them by hand, they went with it.  Now it’s become his preferred method of doing his vocabulary. 

In school they keep paper and pen handy for him, encouraging him to write to communicate.  At home we use a whiteboard when we’re out.  And I just installed a chalkboard in the kitchen close to where he sits so he can practice there as well. 

It’s just another example of how he can still surprise us 🙂

December 14, 2009

A Year Later….

It’s been a whole year since I last posted here.  It’s been a very difficult year.  With puberty in full swing we’ve had issues with increased aggression and changes in medications.  At 5’7″ and 180 lbs. he now towers over me and can easily out muscle me.  There have been more broken windows, broken appliances, broken doors, broken beds… 

And yet the news isn’t all bad.  He continues to type words on the computer and in his Dynavox.  He’s discovered Google and YouTube and regularly types in long lists of keywords to find things to watch and see.   He’s picked up a few more chores (aka living skills) including filling the dishwasher, putting away his own clothing and even becoming independent in toileting. 

The latest report from his speech therapist:

I also wanted to fill you in on the reading and writing program that I started him this year.  Both myself and his reading teacher have been working with him on it and it’s been a huge success.  I put together a literacy binder that has pictures of functional every day objects and corresponding words.  Some of the categories include; food, leisure activities, numbers, shapes, household objects, appliances, etc.  We have been gradually increasing pages since the beginning of the school year.
He began by using his keyboard to type in a word, listen and match it to the corresponding picture.  We then moved to showing him the word and having him match to the picture.  He is now able to type many of the words when shown only  the picture.  In many cases, he is able to type in just the beginning part of the word.  This has given me a great opportunity to work with him on using the word predictor feature on his device.  He’s really starting to catch on! 

All good news.  After a rough time at camp this summer we were thrilled to find that his return to school went spectacularly.  The staff seems to be a perfect match, clearly ‘getting him’ from the first day.  It’s awesome to see the looks on their faces when we drop him off at school.  You can tell that they’re genuinely happy to see him and his eyes twinkle with reciprocal affection.

I’m grateful to have made it through what I hope will be the worst of this transition period into manhood.  And I’m looking forward to the coming year and all the progress he’ll make.

December 22, 2008

He’s the Typing Type

The keyboard screen has become a favorite on Adrian’s Dynavox V.  More and more often we see him go to this screen to type out things he wants. 

Sometimes he needs to check his spelling by going to other pages on the device where the word appears but amazingly, he chooses to type the word out instead of just using the pre-programmed button for that item.

Every few days he’s typing in things – without checking the spelling – that we didn’t know he knew.  I couldn’t even venture a guess now about how many words he can read or type.  It’s all happened so suddenly that our heads are still spinning.

He continues to use the keyboard screen to answer the all important question, “What does that say?”  I considered putting a button on his device for him to ask this question…. but then I realized, he’s already got a perfect strategy for answering the question for himself!  Several times now, we’ve seen him copy words he clearly doesn’t know from items or websites – just to find out what they say.

Amazing stuff 🙂

December 7, 2008

What’s That Say?

I have  a five year old who’s learning to read.  He’s constantly pointing to words and wondering, “What does that say?”  It seems Adrian has similar curiosity but without the ability to ask us to read it for him, he’s left in the dark. 

In the past I’ve set Adrian up with his Dynavox and given him items with words on it, like a cereal box or books or a magazine, so he can type the words in.  But this has always been an activity I’ve initiated. 

Just the other day, for the first time, Adrian decided to try this technique himself.  He had a screen cleaning cloth he’d been looking at and I guess his curiosity about what the tag said finally got the better of him.  He typed the words in and listened as the machine told him it said ‘Scotch Brite’.  

He smiled, satisfied that he now knew what those words said. 🙂

December 4, 2008

Christmas Time Again

I may have been quiet here… but Adrian sure hasn’t been.  He continues to surprise us on a regular basis by typing out words on his Dynavox V that we didn’t know he knew. 

We expect he’ll have a whole new group of words to type now that the Christmas season is here.  Adrian loves Christmas time.  He loves the trees, the decorations, the lights, the music…

He’s already using his pre-programmed buttons to tell us he saw that Christmas tree out in the garage and he can’t wait to decorate it 🙂

September 4, 2008

Thus Ends the Summer

The rest of the summer passed rather quietly.  Camp ended and Adrian spent about two weeks home.  He hates being cooped up here and regularly asked to go for a ride in the car, sometimes with his device and occasionally with sign.

Dad was gone for one of those weeks.  We drove him to the airport.  Adrian was very excited.  I took him to the keyboard screen to see if we could get some insight into what he was thinking.  He typed ‘gr’.  I made a guess and took him to the family page where he pushed the buttons for Grandma and Grandpa.

He’s been very willing lately to make an attempt to type his requests, even if the vocabulary exists elsewhere on his device.  Many times he’s even gone into other pages to verify how to spell the word then gone back to the keyboard screen to finish typing it.  It’s such an encouraging step.

We’ve also seen him attempt typing in his own messages when the word he wants isn’t somewhere else.  The most memorable of these was the word ‘Teletubbies’.   In the end, he got his message across despite having misspelled the word.  Based on what we’ve seen so far, I wonder if he doesn’t understand at least some of the phonics involved in making words.  We’ll continue to take him to that keyboard screen as often as possible.

Today is his first day back to school.  I don’t know if it was the excitement or what but he was up from 2 am on this morning.   He was very glad to get back to school and very excited about riding the bus home for the first time today as well.

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