Havana with the Tobii, October 2015

[@alonaeickmeier2137]

Sending love and respect for everything your family and the powerful Havana have accomplished. We live in Germany. Our daughter with Rett-syndrome is 3years old, speaking through the Tobii eyegaze. We have already achieved so much, that nobody thought would be possible. Thank you for posting this video, proving it is never too late to start learning - and remind everyone around to listen!

[@NotTheSameAsIWas]

Thank you for posting this. My daughter Kaitlyn has Mecp2 duplication syndrome which is very much related to Rett. She is non-verbal and has poor muscle control but we have been fighting tooth-and-nail to get the school on board with using an eye gaze system. Havana is awesome, and I see a lot of the same mannerisms in her as with our Kaitlyn.

[@chanteleleatherwood9903]

We decided to go through CCS (California Children's Services) for her prescription for the Tobii. This exact video is what convinced the doctors to prescribe Havana a Tobii for communication needs. If ordered thought the school, the school will always own it. By going through CCS Havana owns the Tobii and we let the school use it.

[@NotTheSameAsIWas]

@@chanteleleatherwood9903 The problem seems to be that we can't even try one out because the school claims she doesn't know how to use it. (well, duh, how is she supposed to know how to use something she doesn't have?!) How long did it take for Havana to start getting the hang of it? Has she used anything like a pecs system (picture cards)?

[@chanteleleatherwood9903]

@@NotTheSameAsIWasOur school system borrowed the Tobii for three months before we decided to purchase it. This gave us all time to learn how to use it. Picture cards work well for Havana when in a low tech environment. Low tech is the first step, then those picture cards can be made part of the Tobii system.

[@toadeepants]

Ohhhhh, you can see how she's so trapped. Wow, painful to see how frustrated she is with the lack of control. 😪

[@Sam-dd7tn]

toadeepants it hurts me to watch.

[@toadeepants]

Sam Yeah me too. Also I can't stop wondering if there's much more going on in her head, but the choices she has on the device are so limited.

[@Sam-dd7tn]

toadeepants You know there is. So sad.

[@chanteleleatherwood9903]

Yes, she's trapped in a body, like the rest of the Rett Syndrome community. However, the Tobii has given her an opportunity to communicate with anyone....anyone! What a gift. Now her friends at school can "talk" with her and she can have a say in how her day develops.

[@chanteleleatherwood9903]

@@toadeepants We intend to add more options over time. For now we want her to have the feeling of success, so we're helping her master this choices. Then we'll add more. She's 100% there in her head and heart, and the Tobii helps reveal some of who she is.

[@katrinaolsen2444]

That’s great she can walk. I am a nurse for a 16 old girl with Rett. I’m her nurse only at night, so her mother can sleep since she wakes up a ton. And she tries to dislodge her bipap and also has an NG Tube at night. She is excellent physical shape because she gets a ton of physical therapy. She goes to school and swims and has a modified bicycle. And there’s a Tobii. However, she cannot walk or even sit up on her own. She can eat but just not enough or fast enough to keep her nourished. So she has an NG tube at night to make up the rest of her food. She doesn’t make eye contact and doesn’t seem interested in anything but watching Barney. She mainly has a dour expression on her face although she does sometimes laugh while watching Barney. My job is to keep her comfortable and safe while she sleeps. I don’t know that I could deal with her during the day. It’s difficult to give so much to someone who doesn’t appear to care whether you’re there or not. Her parents love her and are wonderful to her. Although they don’t seem to want to get a Tobii. I don’t think she has very much to say I think the parents don’t see the point. Havanna seems to make really good use of her Tobii. And although she seems a bit miserable at times, she also smiles and has enjoyment in her life. You do a wonderful job with her! 😃

[@chanteleleatherwood9903]

Could you image if someone thought you had nothing to say? Break the mold, make the change, believe in her. Cheers!

[@Alan-eg7bv]

Please upload more of her

[@leanneshackleton640]

Incredible!

[@chanteleleatherwood9903]

Yes, it is!

[@bencaldecott6583]

Aww praying

[@Musictoourears-y5n]

Who heard the teeth grinding?

[@bencaldecott6583]

Aww

[@travelingduck5]

Why do you list the option every time? She picks quickly once on the 2nd page which shows she knows what her options are.... do you get to have conversations with her using the device?

[@chanteleleatherwood9903]

By listing the options everytime, this helps Havana memorize the choices. Sometimes she is better at hearing her choices, rather than seeing them on the computer. However, she still understand she has to select her option with her eyes in order for her "voice" to be heard.