We got a call last week that we have a scheduled time to meet with an augmentative communication specialist! YAY - this has been an 8 month wait!! We are sooo excited to get our little Annie talking. Annie was diagnosed with Rett Syndrome at a very early age (16 months) because she was not developing at the appropriate level. We believe Annie started her regression at age 9 months which is too early for talking so we have yet to hear Annie speak a single word. When she was young she would say "ti-ti" for tiger and today we get an occasional "ma", "da", and sometimes we even think we hear a "hi" or "by". There are always sounds and noises that she gets out and we just love it, we always try to put words to her noises. Unfortunatly since Rett Syndrome takes away Annie's use of her hands we are not able to do sign language or even point, however, Annie has been working on some early aug comm devices. The "big mac" is programed everyday for school so she can tell her friends what she did the night before and then her teachers programs it so she can tell us what she did at school. All she has to do is push the big button. We've had this device for almost 2 years now and have had a lot of fun with it. We program "good morning", "happy Birhtday", "Merry Christmas", even "I love you!". But its just a start, its not really Annies words she just activates the device. We also have a "Go talk" which lately has been a challenge because Annie is still slowly loosing the use of her hands and at this point it has just become to hard to use. At school Annie has a 3 choice communicator where she can choose between 3 different items (usually at snack time: cracker, cereal, drink). She pushes the button in front of the item to make her choice. Again, this is not really Annie's voice and she can't really communicate, just make a choice. Lately we have been using a yes/no eye gaze board. This is getting to be a bit more fun. Annie can tell us yes or no by just gazing at the appropriate picture. This opens up a whole new world because we can ask her about her likes and dislikes. We are now hoping with the Augmentative Communication Specialist that we can get a little bit more sophisticated and allow Annie to express herself more. The devices we are looking at are the Tango and the Dynavox Eyemax. Both devices would give Annie the freedom to "talk" - not just make choices but actually have a say in everything she does. We are so excited to give Annie this opportunity. It's been a long wait but we're confident it will be worth it!
Annie using her 3 choice communicator - James is trying to figure out which matchbox car is her favorite - she thinks that's pretty funny!
Annie using her bigmac. On days where her hands just don't want to cooperate she'll use her arm to push the button.
James helping Annie with her yes/no eye gaze board.
In the Lords perfect timing He will heal our Annie and she will tell us everything that she has been thinking and feeling. We dream about what her voice will sound like and what her first words will be. James works so hard with his sister and supports her well beyond what you would ever think a 5 year old is capable of. I know her first word will be "James" shortly followed by "I love you".