I knew it would, but I didn't know when. I also didn't know it would be so obvious, or how it is that I under-estimated Bug so much. We've spent so much time teaching her to advocate for herself, how on earth did it never cross my mind that she would tell me when the time was right?

Tonight, Bug asked me to have to school get her a laptop so she could either type or speak (Dragon Naturally Speaking) to a computer. I swear, I almost had to pick my jaw up off of the floor. I asked her why, and she told me that it was so much easier to do her work and more comfortable, faster too. I asked her if she wanted to talk to her teacher, or if I should, or if we should do it together. She said together, because while she agreed with me that she should talk with her about it because she can explain what she wants/needs and how she feels better than I can, she said that sometimes she feels shy about talking. For the second time in a five minute period I found myself totally impressed and floored by my daughter. Why? Because it is HUGE that she recognized that she can feel shy/uncomfortable talking about these things, and, even bigger, that she could explain to me that was how she was feeling. WOWOWOWOWOW!

So, I left a message for her teacher and hope to set something up quickly. I know how the "system" works, and I know it's unlikely we can get what we need fast. However, maybe we can get the process started, and, in the meantime set-up something temporary.

Huge news. Major maturity growth, and self-expression. I am just so pleased and happy with my girl.

More before long, genetics appointment next week, and hopefully a computer update!

I promised to do a Bug update, so here goes!

Bug has been having stomach pain since August 9th. It has been severe enough for her to invent a whole new level of pain on her scale. :( We tried everything. Ibuprofen, pepto, extra dose of generic prilosec, the IBS med that I wasn't going to try, and upping her Miralax. (just in case). NOTHING has worked. The pain never fully goes away, and gets worse as the day goes on. It has been very stressful for Bug and I. I have felt so bad for her but have been unable to get it under control.

To complicate matters her pedi had just left for vacation when we called about it. Instead of seeing someone new (I asked if anyone else knew about EDS, and they had no idea) I decided to wait until he got back. I still don't know if that was the right choice, but with Bug being complicated I just didn't trust seeing someone new in the middle of this. I figured we could always hit the ER if we went beyond horrible pain into, well, I don't know. I just knew that was an option if suddenly things got out of control.

So... the pedi still thinks it's abdominal migraines. He wants her to take 400 mg of ibuprofen 3 times a day all weekend, and then call Monday if things are not yet under control. At that point he will put her on a script for migraines, or, if her symptoms have changed he might ask to see her again.

He also checked her thumb, as she had popped it at Camp a couple of weeks ago and has been having pain up her arm (into her shoulder) ever since. He said that the thumb is in the correct position (it resolved itself not long after it had popped) and that the pain is likely from swelling that is still going on. Peace of mind for me after hearing that. This is the first time she's had lingering pain after her thumb has been out.

He also looked at her ankles again, and agreed with the PT that bracing the left ankle was also in order. So, Bug is getting another brace. She wasn't happy, but, when I presented it as "if you have the choice of wearing another brace and getting to be more active, or not wear it and sit out more which would you rather do" she immediately picked the brace. It's amazing what perspective does!

Today she also saw her OT and got her silver ring splints adjusted, as well as getting 3 replaced due to growth. We always enjoy going to Keith, he's just so nice!!!

We also paid a visit to our assestive tech friend Jim at ICATER. He sat Bug down and worked on Dragon Naturally Speaking 10 with her. She did GREAT! The program is recognizing her so much better these days, to the point where he even taught her how to use her voice for corrections. While that is not a big deal to us adults, it's a huge sign that her speech has changed and matured a lot! Woo-hoo! Great news, as sometime between 4th and 5th grade I predict she will need to move into Dragon at school for her longer assignments.

Finally, school starts next week. Bug is a 4th grader. I just don't know where time goes. My "little girl" has now had a birthday and is 9. She is looking and acting like a big kid. While that is really cool, I sometimes miss my little snuggle Bug. :) Anyway, I've been busy trying to make a first aid box for her that includes a corn heating/cold pack, an itch stick that doesn't burn her skin, vet tape and gauze for cuts as band aids are causing her skin damage, plus instructions on what all of her medical needs are and how to handle them. While most of that is in her IEP there are many updates and things I'd like to highlight for her new teacher.

I need to get to bed, that about sums it up for tonight!

First of all, I want to say how happy I am that my online buddy Girl, Dislocated is back. I've missed her blog posts dearly! :)

Next up, I suppose I owe a couple of updates on Bug. She had a wonderful Christmas full of family and love. Ok, maybe she did get a bit spoiled. But you only live once, right??? LOL Her favorite gift this year was to the entire family, it was Rock Band 2 for Wii. I know I've posted before about how much I love the Wii, but I'm going to say it again, the Wii is AWESOME! It is just so great to be able to watch a child who is restricted from various activities be able to play them on the Wii. Rock Band 2 was worth every penny, it has brought her so much joy. She sings and plays the drums, and we can do it all as a family. The guitar is just too hard on her fingers, but that's ok, she just loves being able to hangout as a family and play. It's been great!!!

Now, health wise we have no real changes. She's been dairy-free since my last post (over a month now) and yes, her stomach problems are greatly reduced. In addition, I don't think she's missed any school at all during that month, which is wonderful. Historically winters are hard for her. I'm sooo thankful for all of this good news!

So - the other thing that is news is we just had our IEP meeting this week. Bug is still qualifying based on her physical therapy needs, but we no longer need OT servicing. I am happy about this, and everyone agreed she has made wonderful progress. We are going to continue to work with Dragon Naturally Speaking at home, but only so if/when we get to a point where she needs it we're prepared. They are starting to learn typing in the fall, and the plan is for her to give that a shot and see how she does. If she has joint problems then we'll adjust our plans accordingly. I really am hoping she can handle the typing, just because it's less noticeable to type on a laptop in class than it is to speak into a computer! :) But regardless, we'll make sure her needs are met.

We're tried of the cold, but making it through. I can't believe that it's only a couple more months until our second Arthritis Walk. Bug is so excited, she can't wait to go again! I love the fact that she is motivated and enjoys it so much. I know it makes me feel good to get out and do something about EDS.

That's about it for now!

I thought I'd spend a few minutes going back and posting about what we tried at ICATER - the Iowa Center for Assistive Technology Education and Research. (Thank's again Jim!). I'll start with the things that Bug tried and liked. Keep in mind all are adaptive Computer Access Devices, not toys and are priced as such. However, if your child needs them for school, your school very well might be able to get them or already have them.

First off she liked the Joy Stick. It was an "alternative to using the mouse for movement on the computer". I think the thing she liked best was that she didn't have to use her fingers, or do any gripping motions. She just touched the palm of her hand on it and moved it whichever way she wanted the mouse to go.

Next, the more logical choice for her, was a large Track Ball. This was her favorite one, although she tried many. I think the ball and buttons were just the right size for her small hands. Logitech Optical Marble Mouse (USB/PS2)

She also *loved* Dragon NaturallySpeaking, the only problem was that because she is still so young the software had a very hard time learning her voice. Even with lots of training it still wasn't understanding even basic words for her. But she still thought it was wonderful, and wants to use it. Jim from ICATER told us that it is normal for the program to have problems with recognizing children's voices, but that he thinks another year from now we should be able to get it to work a little more easily. Of course, if we have unlimited time to train with it we could probably get it to work, but we don't right now. He said that he's even seen someone with a severe speech problem train it, it just took a long long time. So it is possible! For us, this right now is looking like our best option long-term. Bug loved it, it was amazingly fast, and it would meet her needs for multiple programs.

Kurzweil was another program that she liked, but I don't think we need at this point. It was a "scan-and-read software that reads documents and Windows applications". The great thing about it was that you can scan worksheets in it, and type the answers right on the blanks. The drawback was that someone has to create a text field for each of those lines, and if you have motor skill problems or a lot of fatigue that could be a hassle. When we talked to our AEA about it, we decided should Bug ever use that program that someone would create those text boxes for her ahead of time to reduce the extra work. Just another option for those of you who might need it. ;)

The final product that was a hit for Bug was Co: Writer. This is a "Word prediction program to use Linguistic Word Prediction intelligence". She *loved* this, and while you have to train the program to your vocabulary, it happens very quickly. The reason that it isn't the number one pick is because you still have to do a decent amount of typing, or picking out the words from the selections that pop-up. So while it does reduce the amount of time and stress on the hands, if you can get voice recognition software to work I really think it's the most helpful and logical choice for a child with hand fatigue, motor problems, flexible joints, etc.

Other options we tried but aren't really of use to us (but could be to someone else!):

HeadMouse Extreme. "Replaces a standard computer mouse for people who cannot use their hands". Way cool! Just not something we need. But it sure was fun to play with! You wear a headband and just move your head to control the mouse. Fun!!!

Fingerprint Scanner (for logging in) "Provides users a convenient and secure way to manage and access multiple security phrase and codes with a fingerprint". Again, really cool! But not something we need. One of the great things Jim did was let Bug play with some of these high tech devices just for fun. It was really great of him! (this isn't he exact scanner we tried, but a similar product) Key Tronic Secure Desktop Scanner, Fingerprints (F-SCAN-S001-US)

AlphaSmart 3000. "Allows individuals to create, edit, and store their own original compositions and essays". I suppose this is helpful for some, but not for us. For starters, it is limited, since it is not a full blown computer. Good for a short-term solution, but again, if you are looking at a child who has a long-term disability, I just don't see the point of training them on software/computers that can't grow with them. However, it is lightweight and easy to transport, less expensive, and probably a bit more durable than some of the other options. It does have some word anticipation, and I believe programs that can be loaded onto it that make it more age appropriate.

Clicker 5 was a cool little program. However, it is for children who are much younger than Bug. I'd say pre-school to K personally. It is a "Writing support and multimedia tool that enables users to write with whole words, phrases, or pictures". The plus side was that it was easy to use. The down side was that it is really limited on how it is used. You input a series of words and then a child can select each word and write with them. It does show pictures to go with the words, which makes it great for early readers. But it is very limited since you can only work with the words that are currently inputted in the boxes. Great for basic starter sentences, but not helpful for kids who are already fluent readers and writers.

Intellikeys was a cool adaptive keyboard we tried. It is really hard to explain, so click on the link to view it. I would say it is helpful for kids with fingers that tire easily, and who work with computers that have stiffer keys on the keyboard. An option for a child who is able to type and doesn't need the voice recognition software but finds a traditional keyboard a bit difficult to work with. Bug loved it, but again, it just isn't quite what we were looking for.

Other things to note. ;) Jim told me he was not a big fan of iListen or ViaVoice. Also, we are going in to test another new program which is actually a combo of two. Word Q and Speak Q. I will give an update after we go test them, just under two weeks from now.

Hopefully this will help someone out - I cannot say enough how wonderful it was to have this resource available to us. Even though our AEA has access to some of these items, they do not have a center where Bug can just go and test them off and on at her own pace. It was a huge leap forward for us to be able to do this, and I hope this post will help someone who doesn't have access to a center like us!