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

This past weekend my husband and I got into a bit of a disagreement. Bug was invited to a sleepover birthday party, and they decided the night before that they wanted to take the girls bowling as well. Obviously, this was not a good choice for her, as holding a bowling ball is 1) Too heavy and 2) Not good for her fingers 3) I'm not even sure the splints would fit in a ball without getting stuck! So, I called the Mom and told her I wasn't sure Bug would attend that part of the party and that maybe she could meet the girls after. She was okay with that but said she was welcome if she wanted to sit and visit with the other kids. I told her I'd leave it up to my daughter.

I asked my daughter and to my surprise she wanted to just sit and visit and be a part of the group even though she couldn't participate. As an adult, I couldn't see the fun in that and thought surely it would be upsetting, but she was fine with it. I decided that it was her choice, and to let her attend and watch. Well, my husband was not too happy with that, and thought it was a very bad idea, sure that it would be upsetting to her and a bad experience. I told him that I felt strongly that it was Bug's choice, and that she would have to make choices like this her whole life. It's up to her if she wants to miss out or if she wants to participate the best she can, even if it's just watching. We can't make that choice for her, and the sooner she gets used to making it the better. I feel like if she can find a way to make things work for her and accept her differences now it will be much easier as she grows up more. We shouldn't push our issues on her - if it doesn't depress or upset her then we should be happy for her. He gave in, and Bug went bowling.

I wondered how it would go during the 2 hours they were supposed to be out. I'd be lying if I didn't admit I was a bit nervous that she would decide it was upsetting and feel left out. So, I was shocked when I got a phone call from her all excited (almost to the point where I couldn't understand her) telling me she had gone bowling. I said "you what?" sure I had heard wrong, dread filling my chest. "I went Bowling" she happily replied. "I got to bowl the ball and everything!" She went on to tell me "they had a machine that rolled the ball for me so that I didn't have to hold the ball at all!!!"

She had a *wonderful* time - and we looked up online what she used to bowl. Apparently there is this assistive device that allows people who can't hold a bowling ball to bowl, and this particular bowling alley had one. I had no idea such a thing existed, I have never heard of it nor had my friend whose daughter had the party. If we hadn't let Bug make her own choice about attending the bowling part of the party she would have missed a lot of fun, we wouldn't have learned about this tool, and we wouldn't have opened this new door!

My point is this. We cannot stop living because of Ehlers-Danlos Syndrome. We shouldn't stop our children from living either. Nor should we dump our own personal issues and hang-ups on to them. Just because I wouldn't be comfortable at a party where I couldn't do the main activity doesn't mean my daughter wouldn't love it. :) Sometimes it's hard to step back and allow her to make those choices, knowing she just as easily could have gone and come home feeling sad. But, if you don't allow the choice, you never know what the outcome would have been. You also don't know what you might learn.

Once again it was someone who wasn't a Dr, wasn't a teacher, wasn't anything but a friend who taught us a unique way to do an activity that normally one with Ehlers-Danlos Syndrome shouldn't be doing. There have been so many people like this who have touched and enriched my daughter's life, and I'm sure there will be many more. If you take the time to look around you, I suspect you will find people like this in your life too!

If you are interested in what Bug used to bowl, it is called a bowling ball ramp and looks similar to the picture on the right. The picture is from Access to Recreation and you can purchase this at their website by clicking here.

Obviously you will want to lift the ball for your child, as it does still need to get onto the ramp. :) But they can still feel like they are doing the bowling and aiming the ball themselves, which is awesome!

Yet another year has just flown by! Bug is finished with second grade in a week and a half. I just can't believe that, it seems like she just started school.

Of course we are busy with end of the year stuff. I have meetings with the AEA's PT next Tuesday after school, and the OT Wednesday morning. We are supposed to talk about where Bug is at with her exercises, what we should be working on over the summer, and if she should have any extended year services. While it sounds easy, these meetings usually take awhile, and I walk away exhausted! :)

One really cool thing is our pal Jim from iCater at the University of Iowa is going to drive down next week and meet with the OT, bug and I. He is going to see if he can help our OT with technology solutions, and I am just thrilled! I am hoping that this will open the door for future communication between them (he is a wonderful resource) that will help not only Bug but other children in our district. Jim has gone above and beyond to help us try to find something for Bug to help her, and this is just another example. It just goes to show that thinking outside of the box, being resourceful, and being appreciative can go a long way!

Bug has been playing in the challenger baseball league, it is her second year. The challenger league is for children who are unable to play regular ball due to physical or mental challenges. My daughter just *loves* playing with these children and looks forward to her games. Everything is done as safely as possible. Soft balls, adult toss, heart guards (optional)... Plus each child gets to play to their ability, so many walk, or have other people help them with batting. It's such a great program, and I am thankful that Bug is able to play a sport she normally couldn't!

We are also hoping to get to go horseback riding again this summer, I have to call on that today. If anyone is interested the technical term is Hippo therapy, where horses are used to do physical therapy with kids. It's awesome, usually free or very low cost. We look forward to it each summer. :)

Finally, I did a newspaper interview the other day with our local paper on Bug and EDS. I'm hoping something comes out before the end of the month (after all, it is national Ehlers-Danlos Awareness Month). I'll post here when I know more, but I'm crossing my fingers!