baileymedlin72

She actually does. While she can't communicate by speaking (or sign language), there are certain things that make her so happy and things that really piss her off. Music is something that will brighten her mood instantly. If it's a song or artist she likes, you will know it. She gets this huge smile and giggles, and it's quite adorable. She is a huge, and I mean HUGE fan of Bruno Mars. She could be in the worst mood ever, and you put on something of his, and she is happy with life. Also, when we are out in public and people stare, you can really see that she is mad and hurt. She has this look on her face that breaks my heart, and she just doesn't understand why she is so different. Thank you for your well wishes, i'll pass it on. She's a great listener :)

A lot of times it is a guessing game with her, as far as trying to figure out what she needs/wants. She makes this groaning noise whenever she wants something, but then we have to guess what it is. It could range from being hungry, needing to be changed (she is not toilet trained), or even boredom. So my parents and i will usually go through the list, and it's a process of elimination. A lot of times, if it's hunger, she will bite her hand. So i guess that's her way of letting us know something other than her hand would be nice to eat. :) thanks for the question!

oh man I'm so glad you saw this! as for your question...YES! i've heard that comment countless times and it makes me crazy every time! i get that maybe it's what they have to tell themselves to make themselves feel better, but i don't like it one bit. i think it's a terrible disorder that takes so much from our sisters, and you can see how frustrated they are in their eyes. i don't think there is any blessing about it.

she doesn't get seizures. i'm so sorry to hear your sister suffers from them, I understand a lot of girls too. i think it is definitely more common than not in Rett girls.

saying my sister loves music is a drastic understatement. she lives for it. as i said in one of these other posts, she is all about her man Bruno Mars, but she has very eclectic music taste. she loves everything from old school jazz to one direction. haha. it makes her so happy, and that makes me happy. she has her ipod and ipad, both HEAVILY loaded with her music. that's awesome that your sister rocks out too! id love to hear more about her/you. :) you both seem great!

no problem! that's what i am here for! haha well, she goes to her school everyday from 9 to 3, so by the time she gets home she is pretty tired. and 3 days during the week she has therapists come to the house to work with her. so most of her boredom occurs during the weekend (we think). she has been going horseback riding with my dad every saturday for the past 15 years, and she loves it. other than that, she is very into tv and music. she has a couple movies (high school musical, hairspray) that she has watched 67890 times haha. she loves them to death and doesn't get sick of them! so those are a go to. she also really loves the beatles, bruno mars and bob marley. so she has an ipod that is loaded with that stuff and a pretty nice stereo. She will also meander the house and pop into our rooms and "say hi" but i know she gets bored and i feel bad. we take her on drives cause she loves being in the car, but sometime i feel like i should do more.

Well, she ages out of the school she is in when she is 22, so she has a little less than 2 more years there. After that, she will live with my parents in their house in new jersey along with her one on one aid who is there 24/7. my parents realize that they won't be able to do this for too long because they will become too old to properly take car of her. (it's a more than one person job, so the aid couldn't do it alone). after that, probably in ten years or so), she will go to a special home. we have our concerns and apprehensions about that because of the horror stories, but my grandfather left her a bunch of money for finding the best home there is. Both my sister and I have expressed interest in having her live with us, but we need to see where we end up because we don't want to take her far away from my parents.