The Day Has Come...

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!


Sr. Heather said...

How wonderful! And congratulations on the good, hard work you've done to help Bug get to this point! It is so hard to advocate for oneself, and I know you're proud.

klingon said...

Hello, my mother and my step brother both have eds and we go to the meetings, But I was diagnosed not to have eds. The thing is I had surgery for scoliosis (2 titanium rods 12 screws)and it has been okay for a year or two (Im 19) But now I am starting to have popping in all my joints when doing daily things like picking up a glass to drink, Also after being at college all day and I get home my knees inflame and are hot to the touch and stiffen up. I have some pain but not in my back as I only have pressure sense in my back (i blame the doctor :S) SO I wouldnt know if my back is affected. My mother also has Neuropothy, Lupus, and a marad of other things. Could the doctor be wrong about me having EDS, I can bend my thumb and touch it to my wrist with ease and as I let go my wrist pops back into place, also before the back surgery , in High school when they tested your stretching ability by having you sit down with your feet at a wood block and you bend over the block I could go past 12 inches...

Gumby / Mommy Zebra said...

Thats awesome news that she was able to come to you with her needs and wants. Wonderful job establishing that open communication, she sounds like a very rell rounded little lady. Good luck with Everything!! Keep us posted.


lisa simmons said...

My name is Lisa, im 16, just found your blog from someone else. My mom and i run the Florida chapter of EDNF, and im on a search right now for a pen pal for one 9yr old boy. I was wondering if your children were close to that age and interested or if you knew of someone else who might be.
If you could email me at that would be great. I'm new with the google account thing and not quite sure how it all works lol.
Lisa Simmons
PS- Its always great when us as kids learn to ask for what we need, also i have tried the dragon system before and will say its not the easiest of equipment to use, i personally work well with the Alpha smart which is like a mini laptop that hold 9word documents, no waiting time to turn it on/off, plugs into the wall for charging, and if you plug it into another computer you can send your file to that computer to print it. I have used it for years in school now, the school provided it and all my teachers have worked great with it and me. My care page is:
If your looking for any other hints tips or ideas on good/bad aides for life and school.