Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Friday, November 23, 2012

Abby starts with A!

Something amazing happened this week.  Alison, Abby's speech therapist,  and I were talking with her today about school.  Abby kept grabbing the turkey that she made earlier that day at school.  I guided her to the "art class" page on her computer so she could tell us about it.  She immediately said "red, yellow, orange".  It's not often that Abby is that quick and consistent.  I could tell she was "on".  She then went, on her own, to the alphabet/spelling page.  The letters are arranged like they are on a rotary phone (remember those?), with each box representing three letters.  When she hits the ABC box, she has the choice of selecting any of those 3 letters.  In the spelling page, she can also say things like "it starts with", or add punctuation.  Anyway, she immediately spelled her name.  A-B-B-Y!!!  She was able to go in and out of the letters three times and find all the letters.  We hadn't even asked, which is probably why she was able to do it without getting anxious. Amazing.  So her therapist and I both went crazy and Abby proceeded to say "it starts with A".  And thats not all.  She kept tapping the turkey with her hand and then said "it starts with T U".  She was so proud of herself. My girl is learning how to spell!!! 

Wednesday, November 14, 2012


In the spirit of Thanksgiving, I'd like to write how thankful I am for technology.  This is, by far, not the thing I'm most thankful for, but today it seems pretty important. Not the technology that allows me to make phone calls while browsing the internet, or watch movies and play games, but the technology that makes Abby's life better...and easier.  I'm so thankful for these resources that enable her to communicate.  She uses technology a lot.  It's not unusual for her to use her communication device (Eco2 with EcoPoint) to talk while using a laptop computer to listen to a story.  When she is stressed and over stimulated, she listens to music on my phone to calm her, or interacts with my phone to kill time in a waiting room. Would we survive without these conveniences?  Of course. However, I definitely appreciate the difference they have made in our life. Touch-screens that respond to her touch, even though it is neither refined nor consistent, make her happy.  A communication device that responds to her eye gaze is just amazing.   

Abby and Logan listening to a story on onemorestory.com.  She is using a jellybean switch to turn the pages and commenting on her communication device. 

Tuesday, November 13, 2012

School Update

Today, we had an ARC meeting for Abby to discuss the need for her to have a one-to-one aide and to increase her minutes in the regular classroom.  Thankfully, the meeting went well, and an aide was written into her IEP.  We have requested an aide a couple of times since Abby entered preschool, but each time it was determined that she was "well cared for" without an aide.  Our latest request was about 6 weeks ago.  It was again determined that it wasn't needed.  Ugh. We weren't happy with the decision, so we scheduled an ARC meeting to discuss it further.  A couple of weeks before the meeting, Abby was injured at school. She was sitting in a chair that was knocked over, sending her face first to the floor.  Fortunately, she didn't put her hands out to catch herself (which certainly would have caused a fracture), so her only injuries were to her lips, teeth, and gums.  After the trip to the hospital, our resolve to get her an aide was even stronger.  I wish it hadn't taken an accident to get Abby the services that she needed, but that's pretty much how it went. After a lot of phone calls to attorneys and advocates, recommendations from doctors and specialists, and Abby missing over a week of school, the district finally did the right thing for Abby....albeit a little late, but they did it nevertheless.

It has been beyond stressful. I'm so relieved that this fight is over. It has left me very disappointed in our school district, or at least the decision-makers who do not actually work with the kids that they are making decisions about.  However, the teachers and staff that work with Abby are great.  They are supportive and have her best interests at heart.  I am so excited for her to have more time in her mainstream room! I did a little lesson about Abby and Rett Syndrome for that class a few weeks ago and they were very receptive and welcoming to her. She has been increasing her time in the regular classroom gradually since kindergarten.  It has worked well, and she is progressing smoothly. She has reached the maximum amount of minutes she can mainstream without changing her placement to a regular education classroom.  For now, the placement is great.  She loves being around her typical peers.  Without their own communication barriers, they are able to connect with her in a very different way than nonverbal kids like herself.  With her aide, I am comfortable with her being able to have the modified instruction she needs.  I still think she is benefiting from the small group instruction in her self contained room, especially while she is learning how to use her device. For now, this is a great fit for Abby and I am very excited for what the rest of this year will bring.  

School buddies

Thursday, November 1, 2012

How's Abby?

I haven't blogged in what seems like forever. I've thought about it many times, but the longer I wait, the more "catch-up" I want to do. If you know Abby, you know a quick "catch-up" is not easily done, so I get overwhelmed and end up quitting. So I'll just start with a picture and go from there.