“Ephphatha!”… 28 Days of Cayden, Day 16

Cayden used the SuperTalker for a while & had good success with that and the eye gaze system. However, I was frustrated with the time-consuming page-changing of that device, and so was Cayden. I finally persuaded the speech team to allow C to have an assessment for a computerized speech generating device (SGD). The speech team was quite sceptical that he really understood what it was for & could really use it, so it took me a while to get the appointment.

After a long wait, we finally were scheduled. Cayden was quite excited about it, but if I remember correctly, he was not feeling his best & was having a rough day. We went anyway, since we had waited so long to be seen. He started with the easy switches. They needed to see if he understood the cause & effect of the toys. He did, but, it was obvious that they didn’t believe me, his mom. Of course he thought the toys they had were babyish, so he wasn’t interested & didn’t really want to play with them. Combined with the fact that he was not feeling well, it was just not worth his effort to participate. The team took this disinterest as not understanding, but I persuaded them to try something else.

Springboard SGD

The Springboard Plus. Cayden’s first attempt at ‘talking’ was on this, but with larger icons, I think about 8 on the screen.

After several attempts, Cayden ‘passed’ this first switch test & after a few other things, they let him try a small Springboard Plus. This is a starter computerized SGD, about 6″x8″ screen. They had a few regular screens programmed in for him to use. The first thing he said after showing it to him, and Cayden looking at it for a little while & waiting for him to process & reach was “I want…a…cookie!” I told them they better give him a cookie, because he worked hard to make it say that. The next phrase he said was “I feel… Excited!”

I could tell that he really liked this device. I know he understood that it was something that would make his life easier & with it he would really be able to speak his mind. The evaluation team was not so sure. We tried several other devices and toys with him, none of which drew his attention as well as the Springboard.

After a long evaluation, it was concluded that Cayden probably could benefit from a SGD, now the question was… Which one? The variety was almost overwhelming. But we luckily had a good assistive technology lending library (link) so we were able to do demos on a variety of models.

In the end, we selected a large screen (because of his motor issues, we thought he needed a larger target), possibility of eye-gaze selection, switch selection options, and one with a built in computer (to grow with him & allow him to watch movies or access the internet). The ones we debated on were a large Dynavox & an Eco. I liked the programming & the tech support of the Eco brand better so we decided to move forward with that. After a long involved process (I think it was almost 10 months from the initial evaluation to the day of delivery) challenges with insurance and assistive tech funding we finally got it in October 2007.

Eco-13

Cayden’s screen was not full. We had a 15 icon screen, but several of the spots were empty to allow a bit of flex space in C’s reaching. The icons were about 2″x2″ which we had already determined was about as small as he could go visually & physically.

This was an amazing device! It was so versatile & really was as programmable and as personal as we wanted it to be. I spent many long evenings putting in books, icon pages & school related pages. We had pages for food, for clothes, for people. Conversation pages. Pages for playing with his cars, his trains, his kitchen. Pages to have up while watching NASCAR or basketball with Dad. Pages of body parts & ailments. So many pages. But there were so many things to say!

We could take a picture of anyone & make an icon for them so Cayden could say “Hello Sue! Hello Amy!” He would go from page to page selecting and making sentences. Yes, he babbled, he made nonsense sentences but he also made a lot of sense with it. (The babbling was actually encouraged, as it was his means of doing ‘baby talk’ from an auditory language perspective. He needed to play with words to start to build sentences & hear it coming from his own head, before he could do it correctly. He did this sometimes, but most times, he made quite a bit of sense.)

At first, the assistive tech teachers (who I loved) wanted him to really understand their list of 8 main ‘power words’ & wanted him locked on that screen. Stop. Go. Yes. No. Mom. Me. Out. Eat. That was it. They didn’t want him to do anything else until they felt he had mastered it.

C with arm supports

Front view using the arm supports. These were a crazy attempt to help him move his arms. I think you can see what he thought about them from the look on his face. They helped somewhat, but then he was bonking them on the device & causing mis-hits that way. They were hard to get him into and out of, & I hated having him so strapped into his chair, in case he started gagging, coughing or needed help. These were a good attempt but didn’t last very long.

But as I’m sure you know by now, this was not enough for Cayden. He wanted to talk! He figured out how to go to the other screens on his own & he would just play. He would make nonsense sentences. He would make real sentences. He could sing songs (with pre-programmed buttons that took him to his music). He had been waiting for this device for over 6 months & I was not going to tell him to go back to baby talk. Me go. No mom. He wanted the freedom to chat & I gave him that. (The teachers were not very happy with me on this, but once they saw that he was doing well with it, they lightened up on me!)

He would see new people at a doctors office & say “Hi. My name is Cayden. What’s yours?!” I wanted him to be able to check himself in at the doctor so I gave him and icon with our phone number. Trouble is, he saw a cute girl in the waiting room & said “Hi. My name is Cayden. What’s yours?! I live in North Carolina. My phone number is ……. ” He gave her our phone number! Seriously. The flirt! So I had to disable that screen!

lightning mcqueen

Beep, Beep, Get out of my way!

Not long at all after we got the device, it was Halloween. He was so excited! He decided to be Lightning McQueen so I painted up a car for his chair. I programmed his Eco13 to have the standard Halloween phrases & a few Lightning McQueen ones. This year we not only got to hear “Trick-or-Treat!” & “Thank you!” at every house, but if we caught up to other kids on the sidewalk he’d say “Beep! Beep! Get out of my way!”  Then he’d add “I’m Lightning McQueen & I’m faster than fast. Vroom vroom!” He loved the Lightning McQueen phrases, but Beep! Beep! was definitely his favorite.

By January, Cayden was really starting to become proficient with his device. He would tell us what he wanted to eat. He would tell us what he wanted to play with. He would tell us when he needed to go to the bathroom to be changed. (we were working on the potty changing, but it was slow going. I had high hopes that with the proper communication, he would be able to work it out much quicker.)

C talking with Todd

Talking to Uncle Todd.

The funny thing to me is that the device was so enticing to him (just like the iPad is to most kids) that he quickly overcame his arm movement challenges to make this work for him. His fine motor skills just bloomed with this device. All our prior attempts to assist him with step switching so he didn’t have to move his arms so much, and multiple switches everywhere to make selections went away. He just reached out and touched it. That was how strong the desire to speak was for him.

A desire to be heard is typical. We all have needs & wants and thoughts that we want to share with others. Biblically, we often see people who wanted something, take their requests to Jesus, many of whom wanted to have their family and friends healed.

Mark 7:32-37 (NIV) shares a one such story. There some people brought to him a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.

After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him,“Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly.

Jesus commanded them not to tell anyone. But the more he did so, the more they kept talking about it. People were overwhelmed with amazement. “He has done everything well,” they said. “He even makes the deaf hear and the mute speak.”

Cayden didn’t really begin to speak. But with this new technology, his voice was beginning to be heard much more plainly. This very expensive, very high tech device was such a blessing to our family. Between the ECO-13 and the Cochlear Implant, Cayden’s true personality and potential began to shine through. Two of our family’s miracles came with modern technology, persistence and hard work, but I have to believe that He made the doors open to allow it to happen. We will continue to keep talking about it & maybe someone else will be ‘overwhelmed with amazement.’ Our deaf child heard. Our mute child spoke. “He has done everything well.”

Shira

 

My biggest complaint about Cayden’s ECO-13 was that this new, top of the line model SGD did not have a child’s voice on it. All we had to choose from was a variety of men’s or women’s voices. There were no kid voice options.  We could have had another child record all of Cayden’s speech & program that in if we had wanted, but that seemed like SO much work to me it was not feasible. So he would talk with a realistic sounding man’s voice, which was a little funny, coming from a 4 year old. But it was better than nothing & I do believe that now children’s voices are available on similar devices.

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