Friday, June 01, 2007

Another Blogger?


Given the opportunity, I'm sure Jack would be quite the blogger - he definitely has his mother's fondness for the computer. However, don't count him out just yet. I've been in search of a way for Jack to communicate that is not dependent on this physical strength. Right now, Jack's only means for letting us know (in a way that can be documented) what's going on in that head of his is with switches that are mounted on his wheelchair. On a good day, Jack has the strength to tap the correct switch the correct number of times to activate the computer mouse or the pre-programmed response on the switch. I've always felt that Jack's inability to communicate is due to his physical weakness, not his intelligence. I believe this because Jack's communication skills were much greater prior to his anoxic event -- he could sign, he could say a few words and he could accurately move along his communication board and easily activate it. I don't know whether his anoxic event stole some of his intelligence or just his strength. Jack's neurologist won't give me a straight answer when I ask - she takes the position that she can't say whether Jack present condition is due to his event or his disease. I think she is just trying to save us from additional guilt and pain because, regardless of why ... it is what it is.

Anyway, I digress.......

I think I've finally found a device that will give Jack his one shot at letting us know what's in that head of his. It's a computer that is activated by a person's eyes. This is not the same as the computer system where the user has the dot on his forehead -- that doesn't work for Jack because he can't move his head. The reason this other system might work is because it requires that the individual not move his head and only use his eyes. The system is used widely by adults who have ALS and have lost the ability to move a single muscle in their body, but their mind is still intact. I was given the name of a professor at Arizona State University who might be able to help Jack test the system. Interestingly, after I got the contact information for this professor, Jack was assigned a new speech therapist who I found out trained under this person. The new speech therapist has worked with Jack only once, but she agrees the "light is on" and she thinks it would be worth a shot to try it. She is going to contact the ASU professor and see if we can set something up. I'll give you more specifics about how the system works once we know Jack gets to test it.

I may be setting myself up for disappointment, but if I don't give Jack the chance, how will I ever know? I'd rather be wrong than miss the opportunity if in fact Jack has the intelligence to convey his thoughts via words on a computer. I'll keep you posted.

As you can see, I thought it was time for a new look on the blog. Blogger has all these cool customization features now and I'm sure I'll be playing around with the template all weekend. I did make the text bigger because I don't know about the rest of you, but I have a heck of a time reading my posts because the words are so small. I've got to believe there are a few others of you out there who might appreciate the larger text :-)

For those who wanted to see pictures of Mary's "new" room -- it's still a work in progress. We need to do some more painting this weekend and, now that the room is all new colors -- she needs new furniture to go with it (of course!) After it's all finished, I promise to share pictures. Stay tuned.

Have a great weekend.

11 comments:

Kar said...

WOW! ANN!!! WOW!!!! OHmy, I am SO EXCITED AT THE POSSIBILITIES!!!

I think I saw something like that on the Science channel. How COOL! Ooh, I can't WAIT to see what Jack says!!!!

julie said...

Ann, that is so exciting! I am convinced that Jack will have a lot to say to you. I am sure that he has the intelligence. Keep us posted on how things go.

LOve Juliexxx

Anonymous said...

Awesome, Ann! I can't wait to read Jack's Blog. We might be surprised by what he has to say;-)

The guidance counselor at Jacob's school mentioned getting some adaptive computer equipment for him this year. I'm very anxious...

Love, Amanda

Anonymous said...

If anyone can make this happen it is certainly you. I can't wait to see what kind of results you get. I think Jack is a pretty deep kid and I am not sure why I think that its just a feeling I have.
Fingers crossed in PA!!!
Kristina :-)

kristy said...

Cool! I hope Jack is finally able to express himself more fully!!! I can't wait!

Anonymous said...

Yes, your 40 something friend appreciates the bigger type!!

Oh my gosh, that is so exciting about the possibility of Jack being able to communicate via computer. I've heard about that and I think it's great that you have a connection. I can't wait to hear what happens next.
Love,
Anne

Anonymous said...

Wow, how cool will that be?
I wish you guys all the best with this. I look forward to Jack's first blog.
Love,
Tess

Anonymous said...

Ann, I know I for one appreciate the larger text! I think it is great to try to get Jack the eye movement computer (not sure what you said-if you said-it is called!) We are seriously going to try to teach Allison keyboardingthis summer because her fine motor skills are still way behind her age peers. We think she, like Jack, probably has a lot to say if she only had a method. (her speech is VERY difficult for anyone outside of family to understand). PLEASE do keep usp[osted on this. deb

Melisande said...

Awesome, Ann! I can't wait to see how it goes with this new system!!

Anonymous said...

Ann -

I totally empathize with the "I've always felt that Jack's inability to communicate is due to his physical weakness, not his intelligence." Will is also legally blind and I know that something is there, but I have yet to find a communication device. I've heard of this system for ALS patients and others. Boston College has a program I looked into years ago called "Eagle Eyes". If you can link to this, it has some inspirational articles about it. http://www.bc.edu/schools/csom/eagleeyes/press/soar/

The one article that makes me smile/tear up every time is the kid who was 14 who tried it. They did the alphabet, and numbers, etc. and he did 24/26 correctly. The Mom was so glad she insisted on the ed. department talking the alphabet to her son. The interesting part, though, is when they did colors and they ask to do red. The boy kept making light look at one of the people in the room, and then he would laugh. The room finally realized he was making a joke by pointing at the person with RED HAIR! Our kids are just amazing, and this is why parents really need to advocate so much. I wish I had some more of your strength sometimes.

- betty

Cindy said...

Ann, having met Jack I would agree that he has a lot to say:-) Hope this system works for him, that would be so cool!