It's hard to believe that school has been out for over three weeks, it seems like we just finished! During that time we've been working on Dragon Naturally Speaking 9 Preferred every few days. I got really lucky and found it brand new on Amazon.com for $139.99 plus free shipping, and a rebate if you have an older version of Dragon. I don't, but I'm going to get one used for under $20 and mail in the $50 rebate still saving another $30. What a wonderful deal!!!

We've been making great progress using tips that Jim at iCater has given us as well as our AEA OT's feedback. Some of the things that seem to be helping the most are making sure Bug speaks slowly, having a USB microphone, and training missed words about 7 times before attempting them again. I find this helps because it allows for variances in Bug's speaking patterns. We also have a separate morning and evening profile, as she seems to speak much more clearly in the morning. Our OT suggested at our last visit that we do a volume test each time we use the program so we're going to start doing that too.

Another tip is creating a folder full of documents that have commonly used vocabulary. For an adult you wouldn't need this as much (I wouldn't think) as Dragon scans your computer and e-mail for commonly used words. For Bug, she isn't the one using my computer and she's only 7, so I made the folder and went online and searched for "commonly used 3rd grade words" then 3rd grade spelling words, and finally vocabulary. After than I went backwards and looked up second grade, first grade, and kindergarten. When I get a little more time I'll do forth grade as well. By filling a folder with those words and pointing Dragon Naturally Speaking to it we're hoping it will help it learn Bug's words more quickly. So far so good!

Before Dragon arrived our OT had Bug practice reading sentences into a tape recorder. She would then play it back so Bug could hear and decide if she was doing a good job speaking clearly, too loudly, etc. It was a great exercise and I highly recommend it for anyone who might be thinking of working with their child on voice recognition software. We also had the most success and interest when we made a sheet of sentences about Bug - what she liked, funny things about her brother, etc. She enjoyed reading them and I think that helped keep her enthused while we have been working some of these glitches out.

What we've been working on lately to help train the program have her read stories to it. Currently after she reads I go back an edit the file, save it, and save her user profile. As she gets more accustomed to the program we hope to have her do the editing with voice commands. But first it has to know her voice better. :)

While we still have a long road ahead of us, it is really promising. Dragon Naturally Speaking is understanding her when she uses the tricks we've taught her, and it isn't doing a lot of jibber jabber like when we first tested it. If we can keep her interested and happy training the program (and training her way of speaking to the program) I think this will be a wonderful tool that she'll be able to use on her own before too long. This could be a great tool for other kids with Ehlers-Danlos Syndrome or other arthritic conditions that effect their fingers or hands. It just takes time and patience!

Ok ladies and gentlemen - drum roll please!!! Here is the article that appeared on the FRONT PAGE of our local paper, complete with two awesome pictures of my daughter! I am so excited about this - yippee! The only complaint I have is that they subtitled it a disease, which it isn't, but other than that is a great article for the general public. :) Now, because this blog is so personal and does mention cities and other personal information, I have to edit out a few identifying items in the article. You know, our real names, city, that kind of thing. I hope you understand!

By L. Jacobs
(Mom's name)'s 7-year-old daughter looks like any other healthy child her age, and that, (Mom) said, is part of what makes it hard for others to understand Bug's Ehlers-Danlos Syndrome.

"Ehlers-Danlos syndrome is a hereditary connective tissue disorder, and it affects the collagen in your body, so you basically have faulty collagen, " (Mom) explained. "That means not only does it affect the skin and the joints, it also can affect your lungs and your stomach, and your GI tract, your heart, basically pretty much anything inside of you."

The most common form of EDS affects around one in 10,000 to one in 15,000 people, according to MayoClinic.com.

Bug was diagnosed at age 5.

"She was in kindergarten and (name) was her teacher. She noticed that she was having problems with some fine motor skills, and the thing that really set off the alarm was that she couldn't open a water bottle even though the cap wasn't on tight," (Mom) said.

After meeting with the Area Education Agency's occupational therapist and her doctor, Bug was referred to a connective tissue specialist for diagnosis.

Since that time, Bug has worn ring splints to provide stability for her fingers.

"Her fingers without them basically flip straight back, so it makes pinching really difficult for her - picking things up. " (Mom) said. "They have been a Godsend. They make the biggest difference, and she wants to wear them because she knows they help."

Until this year, Bug wore 10 plastic splints around the top joints of her fingers. She now has a silver set dolled up by (name), a jewelry designers and friend of (Mom)'s, who added pink and purple beads to the bracelets holding the thumb splints in place.

But mostly, (Mom) said, "It's all about preserving her body for the future. The more careful we are now, we're hoping the least amount of pain she'll have as she gets older, which is hard because second-graders want to play and be active. "

"It's just a constant struggle. What is OK and what isn't?"

Cans she do a jumping jack in gym class, jump on a friends trampoline or go to a roller-skating party?

Those are the questions (Mom) and her husband (name) have to ask themselves and answer for teachers and friends.

"We're all learning as we go because it's not something anyone [here] has really dealt with before," (Mom ) said. "We're blessed in a lot of ways that the schools here are so small because being at (school name) and finding out in kindergarten, we have a very close relationship with everybody there, and they're all on the same page. "

(Mom) said a lot of time has gone into making arrangements at school.

"She doesn't necessarily have the stamina that the other students have, but her cognitive capabilities are the same, so we've spent the last couple of years trying to find ways for her to have the same cognitive stimulation and same output as the other students, which is difficult when your hands are constantly fatiguing," (Mom) explained.

Right now, Bug is experimenting through the University of Iowa with assisted voice technology as a potential tool to help her through third grade next school year.

Through it all though, Bug remains "an amazingly positive and caring little girl, " (Mom) said.

"So many awesome people have touched our lives," she said. "I don't think Bug would be as well-adjusted and as happy without them."

Today was quite a day! After posting to Girl, Dislocated (my favorite blog) last night that I'd given up on our Ehlers-Danlos article getting published in the local paper I found out today that it is! Our local paper sent out a photographer to get a picture of Bug. She ended up taking a ton, some doing a puzzle with her Grandmother, some with her toy poodle, another in her room. I have no idea what she will use, or even what the article says. I don't even know what angle the article is taking since I tried to give them as many angels as possible. It doesn't even matter, I'm just pumped!

To top things off, this came on the heels of an interview with a friend of ours who is finishing her teaching Masters. She has a paper to write on either a person with a disability or a parent of a child with a disability. She had asked me if I'd like to be interviewed and of course I jumped on it. She wrote some awesome questions, and I spent over an hour answering them. The coolest part was the reason she asked me was to help us educate other people about Ehlers-Danlos Syndrome. She knew that few people had heard of it and decided that it would be great to share something different with her class and in turn help Bug and I. I just thought that was great. I am really excited about this as well since her paper is being shared with people in the educational system it could reach some incoming teachers (as well as current ones) and let them know about some of the ways we've worked accommodations out for Bug.

I have never advocated in these ways before. Depending on how it turns out I might try to do more of it. :) It's amazing how I've moved from worrying about educating myself, to educating our school, to the AEA, to working on this blog, and now have done two interviews. I would have never guessed this is the path I would be led down even a year ago. It's just my desire to help others like my daughter just keeps gaining more momentum and so far I'm still embracing it and seeing where it leads me. Of course, I could change my mind after I see the article! LOL