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.

Monday, August 30, 2010

First Day of School

Today was Abby's first day of school.  She has been super excited!  It is a little overwhelming getting everything ready for the first day, so I thought I would share a few things that have helped Abby transition.  First, we pack a step-by-step communicator with a prerecorded message about some things Abby did over the summer.  It gives her a way to share with her teachers.  We also print out some pictures to go along with the message.  I don't usually send pictures to go with it-I don't have that much time, but I did have some cute photos from the summer.  She brings the communicator home everyday with a message about her school day.  She really likes using it to tell us about her day.  Also, I am sending this letter to school for all the new staff that will be working with Abby.  She will have the same teachers, but the bus drivers, monitors, and SLP will be new.  I am going to send this with Abby the first day as a way to introduce her....sort of.  It's difficult to sum up Abby and Rett Syndrome in a nutshell, but I attempted.   

Abby has been looking forward to starting school, and is excited to meet all the new people that will be working with her this year.  Abby’s disability is very unique, so I thought I would take a minute to familiarize you with her disability, and share a little about her with you. 

Abby was diagnosed with Rett Syndrome when she turned two years old. Rett Syndrome is characterized by apraxia, or difficulty with motor planning, resulting in the loss of purposeful hand use, loss of expressive speech, and difficulty with ambulation. In addition to these characteristics, individuals with Rett syndrome usually have big expressive eyes, desire for socialization, and many show a love for music. Problems regulating breathing, chewing, digestion, sleep, body temperature are due to difficulty regulating the autonomic nervous system.

Abby is a very happy little girl, who loves to experience many of the same things as her typical peers.  She especially loves having stories read to her, listening to music, and playing in water.  Her disability prevents her from participating independently in many activities, but with help, she can be included and can thrive.   

You will notice that, although Abby is able to walk, she is very unsteady and needs assistance even while taking just a few steps.  There are days when she walks better than others, but it is safest for her to be supported at all times.  We have found that the most frustrating thing for Abby is her inability to communicate.  It is even more difficult for those who do not spend a great deal of time with Abby, as her communication cues are subtle and take time to learn. When she gets frustrated or over-stimulated, music will usually soothe her.  We pack headphones and an iPod in her bag, in case she needs them on the bus or throughout the day.

Although she has many obstacles to overcome, Abby is very social and is able to learn and communicate in her own way.  I have included a few resources if you would like to learn more about Abby and her journey with Rett Syndrome.  If you have any questions or concerns, please don’t hesitate to give me a call!    

Thank you for helping Abby to make this school year a great one!   


  1. i love this! and now i'm going to copy you. hop that's ok.

    i need to learn more about this back-and-forth step-by-step communicator. sounds like a perfect idea for leah.

  2. So cute on her first day of school! I love the ideas to make it a more successful day and will have to look back on this to help when Reagan gets there!

  3. nicely done! i sent a bunch of info to the summer school teacher but didnt even think about sending it to school last week-even though she has 2 new service providers! so, thanks for the idea!

  4. Awesome! And Abby just couldn't get any cuter!!