Thursday, October 8, 2009

Run Daniel Run!

As you know, Daniel has an ECO-14 which in itself is an incredible piece of equipment. This helps Daniel to talk and tell us what his needs and wants are. He accesses it with his hands by selecting the buttons on the screen. Built into his ECO is also the headpointer, which allows people to put a reflective dot on their forehead and it will follow the head movement for the selections. There are other ways to access the device, but mainly using the body.

Another form of accessing the device is with eye-gaze. This is an option that became available on the ECO after we got ours. So, within the last year it came out with PRC. So Daniel's less than one year old device can already be upgraded, click here to see.

I have been waiting a few days to post because I've been trying to think of the right words to explain it. It's at these kind of times that I wish I was good with words and could explain it well enough to get my feelings across. I am sure I will not give the moment justice, but here goes it.

The other day we were waiting in the lobby for our turn with Ms. Pat for speech therapy. She came out and said there was a man there from Tobii Technology and could she try something with Daniel and the Tobii system. Of course, me being me, I was all for it. Being the parent of a special needs child, you will pretty much try ANYTHING if it could help your child.

So, here is what the Tobii Technology offers. The child sits in front of a computer that tracks his eye-gaze. He child then makes his selection without having to move his head but only his eyes. We've tried something like this when Daniel was about 2 years old but he couldn't get his eyes calibrated to the computer back then, and he was too young.

Within mere minutes, Daniel's eyes were calibrated to the computer and he was off and running. Took no explaining to him what was going on, that he needed to look at a selection and hold his gaze for the set amount of seconds to make the selection. He just did it.

With the way Daniel accesses his device now, there is always the "oops he hit the wrong button" because the fine motor skills in his arms just isn't strong enough. We are always saying the he has a "processing delay" because once you ask him something it takes him a few minutes to "process" it and answer. Well that is because of his PHYSICAL issues, not because of his MENTAL abilities.

I stood behind him and watched in amazement. There was NO delay in Daniel making the selections that were asked of him. He was FAST, he sped through the programs. There was even a time when a game was selected for him to play and he did it, then selected the area to go back to the main menu and he selected the original game HE wanted to play, not the game we selected for him.

Again, I am probably not describing it well, but I will tell you it was a moment that took my breath away. It gave me goosebumps. It made me tear up because all along I have said, just give him time and he'll show you that he understands. I have said all along, he is a smart little boy, he just has a body that won't work for him. And right there - in the 10 minutes that Mr. Dan (The Tobii Guy) took to fit in a little boy who was not on his schedule - I was watching my child effortlessly speak through a device and let his voice be heard. EFFORTLESSLY and quickly.

This scene from Forrest Gump stuck in my head and it is how I imagine Daniel felt while using the device for the first time...



I blubbered all the way home, with Daniel sitting in the backseat sleeping. This device opens a whole new world that I knew he was capable of. I am not surprised at what he did because I KNEW he was capable of it all along. But, oh how I wish that every person that has ever doubted this amazing little boy could have been standing over his shoulder with me. I cried because it VALIDATED what I already know. I just wanted to scream, "SEE!?!?!"

So, now begins this parents journey of trying to get the money, funding, approvals to get this for our son. Of course I didn't have my camera during this therapy session, and my phone was dead so no camera there either. But Mr. Dan took a quick little video with his phone. The video is just a small example of how well he did. Check out how quick he is following the pictures.

So, I'd like to say thank you to Ms. Pat for thinking of 'trying' something with Daniel because she always willing to experiment and find ways for Daniel to prove himself. Thank you for being one of the people who believes in him. Thank you to Mr. Dan for taking the time out of his day to open up Daniel's world and coming to the rescue with a camera~!!

Soooo....
To all those "nay-sayers" who said Daniel can't handle things.
To the people who think the most he can handle is YES/NO questions.
To the doctors who said he wouldn't amount to much.
To the person who said he wouldn't be able to handle a device to communicate.
To the people who look upon us with pity.
To the people who judge a book by the cover and do not take the time to look inside...

You are all going to be invited to a really frickin' BIG party and wanna know who the guest speaker is going to be?

Daniel Spranger, and he's going to have a mouthful to tell you. Something that might involve the phrase "Boo-yah, Beeyotch!" (if he takes after his mom and dad that is!)

18 comments:

Anonymous said...

that is awesome. one of my students tried the tobii a year or two ago. i fell in love with it! awesome job!! thanks for sharing daniel with everyone! he's a terrific (and obviously bright) boy!

Sinead said...

Well if that is not the most beautiful story I have ever read, I don't know what is.

Katy said...

I'm sure that's validating. I honestly dont' know how a person could spend ten minutes with Daniel and not see that he's just taking it all in. I didn't spend much time with him, but there's just too much intelligence behind those eyes.

You've given me a lot to think about with aug. comm.

C said...

Wow, Melanie. Hope he gets to continue these opportunities. What a fantastic example of what a child can do with an opened door. :o)

JSmith5780 said...

Too cool! Great job Daniel!

MeghatronsMom said...

Hell yeah! I too have a boo-yah to post as well!

Daniel, keep proving them wrong! You are a super little man!

kate said...

That little video made me cry cry cry!!! And run to my phone to get Gavin set up with an Augmentive Communication specialist. Good luck with the fight - why is everything a fight?!? Unfair. I hope you get this for Daniel. It's obvious it will change a LOT of lives. Gotta go - need a tissue. :-)

Melanie said...

The Tobii is awesome, what is even better is that they have worked with PRC and the technology is now available on the device Daniel is using! So hopefully an upgrade will be in our future.

Katy- I agree with you. If someone takes the time they will realize that Daniel is in there, and there is TONS of intelligence just waiting to come out!

MeghantronsMom- Can't wait to hear your boo-yah!

Its funny cause I still get choked up talking/thinking about it.

Kristina said...

This is such a great post. We're talking about acc devices for Emma and this gives me a lot of food for thought.

JoAnn said...

Melanie, how wonderful!! I'm crying happy tears with you!

It still blows my mind that there are apparently so many "nay-sayers" in Daniel's life....just one look into his eyes and you can't help but know that he's sharp as a tack and the only reason he's "behind" is due to his physical limitations!!!

You go Daniel!!!! Wah-hoo!!!

Kara Melissa said...

Awesome. I had tears in my eyes as I imagined your emotions! How exciting to open up that world of such effortless communication for Daniel. Of course he can do it! :)

Anonymous said...

AWESOME!!!!!!

I still have goosebumps after reading this.

Shannon said...

WOW I too have goosebumps. Just from reading what you wrote. I can't even IMAGINE how you felt watching him do something SOOO amazing that you knew all along that he could do.

I am so tired of people thinking that non verbal=not there because this is SO not the case.

Daniel, you are an awesome little boy and you just keep doing what you do and show EVERYONE what you are made of!!!!!!!!!!

Love and hugs,

Shannon

Big brother, Little sister. said...

Melanie, thankyou so much for sharing this beautiful moment. I can imagine perfectly how Daniel did this and how proud you are of him. I think it is always wonderful to have moments that validate things we already know and am hoping for many more moments for Daniel to show his understanding to all!

Wherever HE Leads We'll Go said...

OK, I had tears in my eyes before I even watched the video. Way to go Daniel! That is so cool! I bet you were so excited! Those nay-sayers don't know what they are talking about. Daniel is amazing and bright and will prove them all wrong. All he needs are the right tools. So glad that this opportunity came along for you guys. There is so much power in this tool - it just opens a whole new world for him. I really hope that you are able to work things out to get the upgrade.

Kevin Rearick said...

Watching Daniel with this machine, opens some huge doors for us and our family. I am a father of a PMG kid, who had been struggling with communication. We've noticed such great increase in his ablility to learn and express himself lately, but this would be huge for him.

If you have time to view my site we'd love to hear what you have to say as well. (www.PMGDad.com) It's another site from the male perspective, but also as a male primary care-giver.

Congratulations Daniel, you give us all a lot of hope.

Jacqui said...

Hi Melanie,

To continue with another conversation, if it is okay - next time I might just say to you "I know how you feel".

As for the tobii, I so hope that you can raise the fund/get the funding for him. I know that Daniel is intelligent and needs to find his voice, so he can not only speak loudly, but speak strongly.

Jacqui

Amy Genn said...

Wow. this is awesome! can I ask you what the first signs were that Daniel showed you he could answer you?
My son doesn't make eye contact or seem to respond to our questions.

I'm worried he won't be able to communicate and it breaks my heart!

thanks, amy