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.

Sunday, November 7, 2010

Annie's New Language!

Annie has had her ECO 2 eye gaze computer now for about a month. She is doing amazingly well with it. She is still learning all of the symbols and what they mean and how to navigate through the pages to say what she wants to say. But everyday we get some really good, really appropriate conversation from her. I have to say that this computer has been life changing and it has the potential to bring Annie so much freedom, so much expression, so much personality and so much hope! We are not taking a second of it for granted!

Here is a video of Gracie, Annie and I talking about Annie's day at school (sidebar - Gracie's tiny voice is soooo adorable, she say's "wild turkey's" like 3 times and I've never heard those words sound cuter - I know, I'm her mom, but seriously..... OK enough). This is something we do every day. I take a look at the note that Annie's teacher wrote home about Annie's day at school and then I ask her questions so I know her talk isn't random.

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The other day I was feeding Annie lunch and she wasn't eating (of course). She was in front of her computer but not saying to much when she started throwing a huge fit. I knelt down next to her and asked her what was wrong. She continued to scream and looked down at the floor rather than her computer. I know that it's not the popular opinion to "force" girls with rett syndrome to communicate, or to really "force" them to do anything - they have severe apraxia of their entire body and typically want to do things but literally can't get their brains to give those signals to their body to perform an action. I do get that but I also don't feel like I'm doing Annie any favors by caving in to every tantrum that she throws and I am very confident in her ability to communicate. Soooo, I told her that she had a way to communicate and if she wanted me to help her she would have to tell me what's wrong - she pulled my hair (for a kid without any hand function she's able to pull hair really well!). I walked away and let her continue screaming. After a few minutes her screams calmed a bit and I went back up to her and asked her again what was wrong, I was showing her the symbol for "I have to go to the bathroom" the symbol for "hurt", the symbol for "I have to lie down" all the things and are typically at the top of my list when Annie throws a fit. She started screaming harder than ever and rocking so hard I had to put my hand on her back to keep her from hurting her back against the chair. I managed to scream over her that I could not help her until she told me what was wrong no matter how long she screamed. She stopped, looked at me, then looked at her computer, navigated her way to "I'm finished" and then stared right into my eyes as if looks could kill. I turned off the computer, grabbed her, hugged her, smothered her with kisses and told her that she was the smartest little girl on earth! She had told me that she was finished communicating - (which can be VERY exhausting). And that communication was validated as her, Gracie and I started playing a game and Annie's fit completely subsided. YES!! The rest of the day was rough, Annie threw 2 or 3 (or 15 - who can keep count) more fits that day that I couldn't figure out, but we figured out THAT one and that is a huge deal!! I'm hopeful for a day when I have a quiet house (and still have kids in it :) A day when Annie is so good at her computer that we only see the fits that are "typical" for kids her age not the minute by minute uncertainty and the feeling that she could just loose it at any minute. It's not that I blame her, I always tell her that if I were her I'd be screaming too but for her to have some peace, some say in her life, is the most wonderful blessing!


  1. She told you! We are just overjoyed for you all as I know how it can improve life. Annie, your eyes will learn where all the words are and be telling the whole family off in no time! xx

  2. That computer sounds amazing. And Annie sounds like she's doing great at communicating with you. I hope we'll get to the same point with Amy one day. (Oh the screaming - sometimes I think ear-plugs really would be the best option - I never get used to it.) xx