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Left to His Own Devices

DevicesBy Cathy Jameson

Ronan loves electronic equipment.  I can’t say exactly when he was drawn to them, but I know it goes back a few years.  From hitting the same button on one toy making it light up over and over and over and over again soon after the negative effects of his vaccine injury took over his development, to choosing to continuously play songs on a playlist uploaded to his iPad, Ronan is content to scroll, tilt, swipe, tap and click.

Ronan’s got access to the Wii, xBox, iPad, iPod, DVDs and an old school VHS machine.  As much as he’d like to, he doesn’t use all of those electronic devices at once.  Over time, and with guidance, Ronan’s love of electronics has actually helped us introduce useful skills:  understanding that he has to share with his siblings as they play a Wii game while he waits for his turn; finding a favorite song to calm him down after his behavior has escalated; practicing sight word recognition with spelling and reading apps.  But, if I’m not paying attention to how much time Ronan’s had with some of these devices, he will easily isolate himself with them.  That leads to turning functional leisure time into a chance to perseverate again.  We’d rather he use the devices as they were intended and also hoped he’d use the ones with typing and speech features to tell us what he knows or needs.

With how technology has opened many an opportunity for other children with severe expressive speech disorders, I’ve gobbled up every success story I could find on using assisted technology devices.  I was floored hearing Jeremy’s graduation speech,  I was encouraged after reading Schuyler’s Monster and I am delighted to be able to follow Carly Fleischmann’s story on her Facebook page.  Ronan’s not yet ready to give a full speech yet, but he’s increased his desire to tell us what he needs or wants. 

We had an assistive communication device a few years ago, but Ronan wasn’t making a good connection with it.  Then it needed repairs.  We’d looked at replacing it with something ese like the GoTalk or Neo.  Trying to save money while raising non-verbal child with the intense needs Ronan has is not always an easy task.  So, we thought some more.  Then, we had a light bulb moment:  why buy something when we have something else? 

We happened to have an iPad and an iPod and went back to attempting to utilize speech apps with Ronan.  Over the years, we’ve tried using them.  Some were easy to use while others were not.  But because we’d already introduced other features on the iPad and iPod (like games and being able to access youtube) the speech apps we downloaded were less as exciting.  I tried to hide them, but Ronan knew they were still there.  He was more interested in playing than recognizing that his typing and tapping skills could open more doors. 

The more we tried the speech apps, struggles, both his and mine, increased.  So did his possessiveness over the devices. 

  CJ feb 1

 

Since we were having little success using the iPad and the iPod for communication, it was time to brainstorm again.  After getting the book, Reading by the Colors by Helen Irlen www.irlen.com I had an idea.

On top of his lack of speech, Ronan had some vision issues.  Trying to eliminate extra barriers affecting vision, while also encouraging him to come to us to tell us what he wanted, had to be factored in.  Ronan needed something that would grab his attention, be pleasant to the eye and be something he’d gain immediate feedback.  I could make something that fit 2 out of those 3 needs.

Knowing Ronan can read, and that he enjoys spelling many words, I made a keyboard for him.  It wasn’t an electronic keyboard though.  It was much simpler.  I added letters, numbers and his name.  Then I thought, well, he does have some basic words he uses that would be easier to point to than type out.  With how exhausted he gets, Ronan will sign that he’s tired or sad while asking for a break. I thought I’d add some of those words (prompts) as well.  As unsophisticated as it was, what I made was shaping up to be a useful tool. 

The only thing I couldn’t provide for Ronan with this project was the ability to make his personalized keyboard interactive until…. I realized I could be his voice output device!  I’m the one spelling the words he signs to me.  I’m the one he immediately goes to for help.  I’m the one who can get that cookie or open the door to the playroom to play Wii, or get that iPad I’ve put away until after lunch is over.   

It wasn’t the best solution as I am not always with Ronan (when he’s in school and when he’s in his therapy sessions), but it would be a temporary fix that would hopefully bridge to another communication opportunity we learned was around the corner.

Experimenting with color of the paper, font size and color, I created paper “keyboards” for Ronan. Ronan’s had already memorized where the letters are having had plenty of opportunities to type with me on our home computer.   Opening up 27 youtube video screens when Mom’s not looking sure beats the effort it sometimes takes for Ronan to type a message.  Our home computer has other fun features that get in the way of staying with a typing activity.  We needed just a keyboard and the means to make his words come alive. 

These would do the trick:  

  CJ feb 2

 
CJ feb 3

While using these, and gaining speed and confidence knowing a request would be granted soon after, I went back to searching for keyboard-only electronic devices. Holy price gauging.  They were just not going to be an option for us.  But, our speech therapist, who is always looking out for Ronan, knew that he’d needed something more advanced than just a piece of paper with letters and a handful of words.  She started looking for output devices and narrowed down a few for me to check out.  Making sure it would carry him through the years with a rich vocabulary, we found one.  We made sure to stick with one that our insurance would cover because all devices come with big price tags.

We continued to use the paper keyboard at home and in some therapy sessions.  I kept one in the car had one at home.  A few months later, we got news that a device would finally be available to Ronan.  Knowing that the device also had features that typically distract Ronan, I’d have to learn how to hide them while Ronan got used to using it to communicate.  In time, we’ll slowly introduce the other prompts and features so as to compliment the vocabulary he has and to hopefully expand it as well.

Using his right thumb and left pointer finger to navigate the keyboard, Ronan has successful transitioned to the output device.  It wasn’t an overnight success and took some redirecting, but Ronan can go to the device unprompted to get my attention. 

We’re creating a new pattern and a useful habit—use the device to get what you need. Use the device to tell me what you want.  Use the device to ask to play with one of your other devices.  The night it all clicked so beautifully was when Ronan asked for his iPod.  It happened right after dinner a few days ago and deserved a photo (he spelled ‘I od’ initially, so I had him go back while listening to me sound it out loud. Ronan’s a quick learner and got it right the second time.)

Highlighted in the blue box is a full sentence Ronan typed on the device.  Here he is waiting patiently for me to put the camera down to go get him the iPod.

CJ Feb 4

We did the happy dance.  The siblings jumped for joy.  They too wanted a turn typing some words for Ronan, but one of his cute younger siblings, who shall remain nameless, accidently masked all the keys on the keyboard causing them to temporarily disappear causing this mom to freak out. 

OH NO!  His words! His voice!  Gone! NO!!!!!!!!! 

But, with a little bit of pushing this button and tapping that one, I unmasked the keys we needed and Ronan was again on a roll.  We now have a new rule in the house:  the sibs have to be supervised until they too learn how to navigate the device.  They are honoring that rule and are cannot wait to have conversations with Ronan and so they can quiz him with words they want him to know. 

It’s very exciting to witness this breakthrough, but we’ve a long way to go to have Ronan “fluent” with the device.  As he learns we do still encourage Ronan to sign and to write when he’s able.  Signing takes extra effort on the days his energy level is very low.  Writing does too.  But, I snap pictures of his messages because I am so very proud of him. 

  CJ eggs

Ma, I want some eggs!

CJ eggs 2

Wii yes The kid loves to play!

CJ go

 

 

We had told Ronan we were going out for French fries one day. Ronan wrote down that he was ready to go.  J

Being able to communicate is innate, but that skill was robbed from Ronan.  Over time, his behavior became his communication—both positive and negative behavior.  When negative behaviors became the norm, we had to do something to give Ronan his voice back.  Now that Ronan can calmly, and oh, so politely ask for things, his behaviors have reduced.  I don’t have to compete with aggression when Ronan simply wants a snack or to play a game. 

What I sometimes still compete with is Ronan’s music.  While I have my alt-rock station on, and as he plays song after song after song on his iPad playlist, I could easily turn up my music to drown out his.  I won’t do that.  Just like I find peace and calm in my music, so does he.  I’m grateful he has that outlet and respect that it helps soothe him. 

When he calm and ready to ask for something else, Ronan types it on his new device.  He wows us with words we didn’t know he had.  As more words and thoughts spill out of that amazing child of mine, I can’t help but feel that his future is looking a little brighter.

  CJ ronan1

 Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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As a communication coach in a private school, I find it helpful to set up Guided Access on a students iPad. This helps the child to remain in the desired app for communication while being able to enter a 4 digit code to quickly get out( obviously with your child not knowing the code...lol!) To set this up , just go to settings, then Accessability and guided access. There is a youtube instructional on this. Hope this helps.......

Cathy, it's so fantastic to hear from someone about the specific challenges and progression with these communication aides- especially your homemade one! Way to go, guys!
You're doing great, Ronan!

so wonderful!!!!!!!! brought tears of joy....great work all of you!!!!!

As a communication coach in a private school, I find it helpful to set up Guided Access on a students iPad. This helps the child to remain in the desired app for communication while being able to enter a 4 digit code to quickly get out( obviously with your child not knowing the code...lol!) To set this up , just go to settings, then Accessability and guided access. There is a youtube instructional on this. Hope this helps...

LOVE this! What a testimony to an amazing young man and such a phenomenal family!

Cathy, it's so fantastic to hear from someone about the specific challenges and progression with these communication aides- especially your homemade one! Way to go, guys!
You're doing great, Ronan!

We have the PRC Accent 1000.

If you haven't gone this route yet, I have heard that some people have success going through their schools for an AT eval and with providing a device. I am sure it's a process but could be worth looking into.

Best of luck! Cat

What is the name of the device you have? Right now we use an app (a good one, an expensive one) on his iPad, but there are so many other distractions in his iPad, ya know?

Good for Ronan! Keep up the great work Buddy!

Angie

Such an uplifting article. Thank you for sharing your successes. I'm so happy that Ronan is finding his voice and I hope he continues to make progress.

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