Saturday, December 28, 2013

Finally communicating his thoughts

For those that have been following Kreed's progress, I've been trying to figure out how to unlock what's inside of his head forever. Years ago I figured out he knew more than what he was showing us and began raising the bar- that's how we figured out he could read and use a device. Even with using the device for the last year and a half, I knew there were still some things missing! Kreed could absolutely ask for his wants and needs with generally one key hits- whatever the object was. But we could never get him past the hump of only using nouns and not any kind of phrase or typing or telling us his thoughts etc. We tried everything- PRC, prolo2quo, different apps on the ipad, and his favorite among them- Dynavox Maestro. He was tapped out on all of them. None could take his language to the next level.

Then he got the newest Dynavox, first the app on the ipad- Dynavox Compass and then the dedicated device called the Dynavox T10. It was like a switch flipped in his brain. The first time he played with the T10 he giggled. No joke it's on camera!

And he started using phrases almost immediately. Kreed uses the NavBar page set and it is super set up for him to communicate his thoughts in phrases and comments and questions rather than just one hit keys of nouns. It's amazing. Changed the quality of his language immensely. He was communicating more fully and he wanted to communicate more. I will write more on this later, but on with his progress.

Then one day I was going through Facebook pages and I noticed a picture of a woman holding like a wooden spatchula for a child to use their device. I thought that was clever- Kreed has always had tremors in his hands and trouble with motor planning. The next day we went to Home Depot and picked up a couple to try. What happens next is magic. Here are two videos.

Kreed has known how to spell- we knew this to some degree, but not to this degree! He can tell us exactly what he thinks!!! This was so incredible to us and a miracle. It really all started with a shopping trip to buy a present for his mom- completely his idea. Here is the main video of this:

And then a few days later on Christmas Eve he spelled out Target when I asked him where he wanted to go. When we got there he wanted to buy gifts for his favorite cousin and his two older brothers! Again astounding he knew to get them gifts and wanted to AND things they like!! His brother Kyler loves Disney movies and collects them always and his other brother Kaden has always loved Star Wars. Again amazing for us. Here is the video.

We continue to film daily his progress. While it was not an all at once occurence, he is certainly showing us what's in his mind and what he's thinking and we couldn't be more thrilled to finally know what he is thinking. His behavior has improved dramatically as well now that he is communicating. While he gets frustrated, his frustration is generally if he can't do something or wants something he can't have. But this too is improving and he is learning to accept no better and choose another activity.

People have always assumed Kreed's behavior was for this reason or that reason (you know, desire for item or activity, sensory, attention, escape/avoidance), but really at the heart of all of it was communication. I can look back on many things in the past and kick myself for not seeing it. And then the absolute chance that I saw that facebook picture- it changed his life. I don't even know the page that had it- so if you know of the page that has a picture like that please tell me. I owe them my life, and Kreed's. I'm still in shock at the difference. He just needed more arm support. This quote:
reminds me of what its been like for Kreed. It's not that he didn't want to communicate. It's that he actually physically had trouble with his hand and arm and moving it correctly and steady to type what he wanted. And with his Dynavox T10, a whole new world of things were at his fingertips and he was able to more fully communicate, including mastering yes/no in relation to questions- which gives him a huge world he can communicate with and tell us exactly what he wants. It's all amazing to us and we have to go back to the drawing board on teaching him! We are so thrilled and I am so proud of him for sharing his thoughts with us. It's an amazing journey right now and we film all of it to show others what it can be like with persistence and determination and not quitting on your child. Six months ago Kreed was raging so bad he had bruises all over his body, as did I, he stopped using his communication device, he was hurting himself dozens of times a day and had to be restrained much of the day which was physically exhausting. I didn't take him in public anymore because he would just rage. Fast forward six months later, he went to Best Buy with me for two hours- no shopping of his own, but talked to me the whole time about what he was thinking with his device, he goes out with me every day for anything, he communicates all day long and rarely hurts himself and there are always clear cut reasons. Amazing. He gives me so much hope.