Was anyone else aware that on top of all the more well-known symptoms of Rett Syndrome (like loss of language, physical disabilities, breathing problems, severe anxiety, sleep disorders), there are so many lesser known ones, like excessive tartar buildup? Yup, my kid has that too. So what does it mean? We go to the dentist every 6 weeks for a cleaning.
Thankfully we’ve found a wonderful dentist who puts Lily completely at ease. For example, the last time we were there for a cleaning, we had to get her two bottom front teeth pulled (her baby teeth had popped up behind them and were there for a while). This kid didn’t cry once – not when they gave her the novocaine. Not even when they pulled her teeth. I cried. But not her.
Earlier that morning, I explained to her what was going to happen. And I told her that if we put her two baby teeth under her pillow, the tooth fairy will come. She became very excited.
That evening, she and one of her therapists had a conversation about it and they wrote a letter to the tooth fairy. All the words underlined were her exact words on the Tobii. The tooth fairy found it when she was picking up her baby teeth and putting money under her pillow. And it made this tooth fairy extremely proud!!!
Yeah lily…what a brave ,strong, smart girl…I love you
Amazing Lily!!! So brave and beautiful!!!!!
A dentist visit every six weeks. Wow! I’m glad she’s such a trooper 🙂 Kid friendly dentists are soo important. Ours has a playroom before my boys go in and is very kind.
Does L use a Tobii Dynavox to communicate? My eldest son is 10 and has been using a Series 5 Dynavox since he entered kindergarten, at the suggestion of his early childhood speech therapist. He uses it at school and home and we recently got the Dynavox app for the IPAD that he carries on trips. It’s great that L has such a supportive community of family and friends to support her in her journey. Thanks for sharing!
Yes, Lily uses the Tobii I series (http://www.tobiidynavox.com/iseriesplus/). She has one at home, and one at school that is programmed by an amazing assistive technology expert, who also happens to be Lily’s home-based speech therapist. Given that Lily’s hand function is minimal, we rely on the eye gaze technology. So glad that your son’s program can be downloaded onto an iPad! What is the program you use? Lily uses the PODD system through Communicator.
The app my eldest uses on the Ipad is “Compass,” by Tobii Dynavox. We first used it in 3rd grade, when we had to ship his device in for repairs. The Compass app had just come out recently, so we were glad to have it! It’s not as detailed as his Dynavox series 5, but still is very useful. The Compass app also has things that the dynavox doesn’t though, like a whiteboard he can scribble on