Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Tuesday, September 1, 2009

Getting Ready for School

Annie has worked so hard this summer. Not only on her walking and strengthening but also on her communication. Annie has completely blown us away in her knowledge and ability to communicate many of her wants and needs. So much so that we recently had a neurology appointment (check up) and her doctor wants to see her back in just 3 months (rather than 6) to track her progress with communication and education. Ok, I'm bragging a bit here but I really think she deserves the credit. Our doctor asked us what we think the recent increase is due to and I simply said that we have discovered how to hear her. It's true, Annie's been "talking" to us all along, subtly, and inconsitently at first and now that we have opened our ears and discovered how to hear her her confidence has soared and she's realized that she DOES have some say in what she does, eats, plays with, watches, etc. With the increased confidence comes increased communication.

We had a tough time in school last year trying to convince her teachers and therapists of her abilities. Much of the problem is miss Annie - she is a social butterfly and would much rather people watch and be silly with friends than concentrate on her work. We have worked on Annie's ability to concentrate in OT this summer - using light boards and trying out different glasses and goggles that might help Annie focus her attention (note to self, Annie does NOT like glasses and goggles :). We were determined this summer to really work on communication and learning, not only for school but also to get her ready for the MyTobii P10 eyegaze computer. Our goal for the summer was to learn our numbers, colors, shapes and letters. Yes, ambitious, but what I discovered was that she already knew some of these things (like shapes) when I first took out the flash cards and quizzed her she got almost all of them right! And why shouldn't she have, she's been listening these past 4 years and taking in information, again, we just needed to find a way to be able to listen to her. We ended up becoming very good at our colors, shapes and letters but unfortunatly didnt' get to our numbers this summer.
I think the most frustrating part of all of this is convincing others of her ability. When someone is unable to speak many people assume they aren't smart or they can't hear or that they have nothing to say. Nothing could be further from the truth - I've often said that once Annie is able to talk she's going to rack up our phone bills talking to all of her friends! And I am constantly trying to get people to "assume inteligence". I truely believe that the problem lies with us "able" people, WE need to figure out how to listen differently rather than trying to get "differently abled" people to "talk" our way.

I pray that Annie continues to be able to communicate and learn throughout this school year. We are trying to come up with ways to help Annie concentrate and give her every opportunity to "talk" throughout her school day to her teachers, aids and of course her classmates. I've stolen lots of ideas from other rett moms (thanks Kelly!) and I'm really excited to start fresh this year. School starts on Sept. 14 with a brand new teacher and classroom - we're so excited!!
This is Annie's eye gaze communication board - Scott made it out of PVC pipe then we put velcro pieces all around the perimiter. Right now Annie uses it to decide between 4 choices but we can add ass many choices as we think she can handle. It's nice and light weight to.
This is my view when we are communicating. I hold up her communication board and look through the middle of it so I can easily see what card she's looking at. When we are learning I ask "Annie, tell me where the letter G is" and then she looks at the card with the letter G - then I throw a wild party and smother her with hugs and kisses!! ;0) Smarty Pants!

These are some of our flashcards for learning. Just your typical, dollar store flashcards, we just hot glue some velcro on the back so we can attach them to her communication board.

Annie also uses yes/no cards all day long! These are invaluable, especially when we're out and about, it's so easy to just ask yes/no questions and bring these two cards along. We also have more/all done cards. Lots of copies so we can put them around the house, in the car and at Grammys!

you can't see her eyes here but I just asked her if she wanted to take a bath, see what she's looking at? Her "Yes" card - she loves the bath!

There's so much more. We have an entire binder full of pictures of outdoor things, books, toys, places, people, etc. so Annie can choose what she wants to do and play with. We also have "menus" so Annie can choose what she would like for breakfast, and to drink (lunch has too many options and dinner she's limited to what mom cooks ;0). We try to give Annie every opportunity to communicate. I love watching her face light up when she gets the right answer and how happy she is when she is able to do what she wants to do. We are planning on making an "Annie book" hopefully before the first day of school that tells all of Annie's favorite things - not the things I think she likes but actually the things she tells me are her favorites! I love learning more and more about her, she is such an amazing little angel!


  1. What a great and informational update Bridget! This has answered so many questions for me. I knew Annie could communicate with you but didn't exactly understand how. How AMAZING!! I can't get over your determination too as a family too! What creative ideas! I look forward to learning more about Annie and her's really fasinating!!

    Karen ;0)

  2. This is so inspiring! Juliana is just turning 3 and I am so excited about all she is going to learn. Slowly but surely, we are going to ge there!

  3. I am SO behind in my blog reading! I LOVE this post - I am so encouraged by everything Annie is doing , she is going to knock the socks of her teachers this year....GO Annie GO!!!