When Ava was first diagnosed with Rett syndrome at 22 months, I had a lot of preconceived ideas about what she was going to be like. In the months leading up to the diagnosis, I had spent a lot of time conferring with Dr. Google who informed me over and over again about all of the things girls with Rett can’t do. They can’t talk. They can’t walk. They can’t play. They can’t use their hands. They can’t learn.
It really did a number on me and when she was finally diagnosed, it was a huge blow. To be clear though, the blow was not to her. As my husband and my parents kept telling me “Ava is still Ava.” Rather, the blow was to me and to my expectations of what her life (and mine) would be like.
Interestingly enough, immediately after that appointment with the neurologist we had an appointment with her amazing physiotherapist, Simona DeMarchi. As soon as we walked in, I blurted out that Ava had Rett and broke down in tears. She gave me a long, emotional hug and said: “Now we know and we’re going to keep working.” And that was that. She didn’t suddenly change her approach or make the exercises easier. She kept on expecting Ava to rise to the challenge. And rise to the challenge she has.
In and around the same time, I came across this video of another little girl with Rett, Cammy Can, using a Tobii to communicate and I was floored.
This was in stark contrast to the image I had conjured up when I read descriptions of Rett. My husband and I agreed that if there was the slightest chance Ava would be capable of communicating, we were going to make sure we gave her every opportunity to succeed. As a teacher and someone who speaks three languages, I was hell bent on getting her started as early as possible. We researched and figured out that we could bypass the stress of waiting to be approved for a device by purchasing the Tobii PCEyeGo.
We took a road trip to Chicago to see Susan Norwell, and it was life altering- not only for Ava but for me as well. At first, Ava was not too happy about the Tobii, but eventually she calmed down and started making selections. Then an amazing thing happened. Susan had a conversation with Ava. I remember saying to Susan, “surely she’s not intentionally selecting these buttons- she’s never used symbols, let alone these ones.” And Susan very firmly (and almost irately!) said: “Well how do you know she doesn’t mean what she’s saying? She can see the pictures and she’s smart!” From the moment Susan met Ava, she believed in her abilities. She expected her to communicate using the Tobii. And communicate she has.
It took one final group to kick me into high gear. I was lucky enough to virtually bump into Eryn online. We had both posted questions about the PCEyeGo in an online group, so I sent her a private message. Turns out she was also Canadian and worked closely with a 16 year old girl with Rett. We became facebook friends and shortly after, she posted something that changed my entire way of thinking:
“For all of you who have been asking how Jo has been doing with her new eye gaze communication device. Here’s the conversation Jo had with her mom this afternoon;
Jo: “I love you mom” “How’s it going?”
Simone <Jo’s mom> “I love you too Jo. I’m pretty good thanks, how about you?”
Jo: “My servant woke me up early again. I really think we should consider firing her!”
Well that pretty much sums it up. ROFL”
My jaw dropped reading this. Here was a girl with Rett clearly communicating more than just needs. I immediately stalked, I mean sent a friend request to her and to her mother, and a wonderful friendship has since ensued. Jo is incredibly smart, is a talented writer and is very well spoken. She advocates on a city youth council for underprivileged, underserved, and undervalued youth in society. She has great taste in music, enjoys skiing, and loves bobsledding (both for the sport and for the eye candy.) She has a wicked sense of humour. She is quite simply the most amazing 16 year old girl I have ever met, Rett Syndrome or not. I would like for both of my girls to aspire to be like her. (Well, maybe minus the potty mouth!)
I asked her mom how she did it. And her reply was simple- If you don’t believe in your kid, no one else will.
Those words have since become my mantra. And how true they are. I believe in Ava, and I expect her to work as hard as she can.
I am amazed by all she has accomplished in the 8 months since receiving her diagnosis. I’m not going to lie- it’s not all rainbows and unicorns. Rett Syndrome sucks. Sucks. I still have days where I am incredibly sad and angry, and would rather not get out of bed in the mornings. But those days are becoming fewer and farther in between. I’m trying my best to work as hard as I can to help Ava so that she CAN do all of the things her older sister does like talk (on her Tobii or with her eyes), walk (with some assistance), play (with a little help), and learn (with accommodations). Because she expects it.