A dream

Above is a video taken today of Nathan using his Dynavox. For those who don’t know, it is controlled by his eye gaze – the computer reads his retina, and if he looks at something long enough, it makes a selection. You can’t really see in the video, but each screen is made up of boxes about 2 inches tall and 2 inches wide. On the top left there is a button that takes him to the main menu, so he can always get back to the main categories to make other selections. Each category has various pages, each page representing various activities. Nathan hasn’t used the device much in the last few weeks because he was so sick, plus we reorganized the pages, so he is exploring everything and getting reacquainted. But you can see how he whizzes past each page, and goes from page to page looking at different activities, telling us different things, etc. PS this is a long video – I usually edit them – but I wanted to show a long, unedited example of how Nathan uses the device.

Until recently my focus with Nathan’s rehabilitation was gross motor development. I figured that kids spent the first year and a half or so working on their gross motor skills, and then they spend their next year and a half learning to talk. I also figured that if we could improve Nathan’s motor skills, it would also improve Nathan’s motor planning skills and control over his muscles, thus giving him the possibility of speech in the future.

Now Nathan is almost 5 and since his progress with motor development has been so limited I have started to focus a lot more time and energy on communication.

Before I wanted to strengthen Nathan’s greatest weakness, hoping that would help improve his overall development. Now I am trying to focus on his greatest strength – his cognition and his wish to communicate.

So the other day I went to a small augmentative communication conference held in Claremont, California. Nathan was in the hospital and I hadn’t left his side for 5 days. But that morning, I realized that Nathan WOULD get better, he’d leave the hospital and would need me to continue helping him to communicate. So against the screeching of my heart, I left him with his dad and went to the conference. It was a dream come true.

I was only there for a couple of hours – but those two hours gave me SO MUCH.

The first session I went to was led by a teacher at the Claremont Unified School District. She gave a talk about how her class functions, and she had computers set up with many of the tools and programs that she uses.

She described a classroom where ALL of the children use augmentative and alternative communication – some use devices, some computers with switches or other special equipment. She described how she adapts the curriculum for each of the kid’s needs. She described how she used various tools and programs to teach kids of various ages at their individual levels. She described how she spent time every day making the curriculum accessible to each and every one of those kids.

For the parent of a non-verbal kid – it was to die for, a dream of dreams, beauty at its finest.

It made me so happy to see with my very own eyes what IS possible. To see that something that made so much sense to me is not only possible but is already being implemented!

I was glad that I followed my intuition. That session alone was wonderful, amazing, worth gold.

I also went to a couple of other sessions that I thoroughly enjoyed. One was by a Dynavox user, given THROUGH his Dynavox – it was wonderful! Another one was by two speech therapists, talking about different issues and things to keep in mind when using Aug Com devices. I left with a few business cards, a few great new contacts, and a lot of hope and excitement!

I have already gotten in touch with a few people so I can get some ideas about how to continue moving forward with Nathan’s communication skills.

4 years ago I was in my search for therapies for motor development, where I am today in my search for therapies for communication. There are so many things to look into, so much to learn, so much to explore and figure out. But just like we figured out the motor stuff and found the best of the best, I am confident that we will figure out the speech stuff. We already have the supremely talented and amazing Mrs. Ronna on board – I couldn’t ask for a more amazing person to work with Nathan. So now we just have to figure out the school integration stuff. And as always, I will not stop until we get Nathan the best support to develop his cognitive and communication skills.

I leave you with a couple of documents that the teacher at Claremont shared:

https://docs.google.com/leaf?id=12btdIo-fEvwwXOiWkpWif5MLEp43Gzz8eYZKOCukL2MP81lUJd47VrHGXwqE&hl=en

https://docs.google.com/leaf?id=1DiUoqz3nFd18xYi2nLxxyPttAMuJ7tQoFdjQ763XxwhdItQLMxubz60tzbyK&hl=en