Rett Girls AT

Comment by Pete Pachuski on May 24, 2008 at 9:45am

Look forward to collaborating.

Comment by Nichole Thomason on May 24, 2008 at 11:36am

I also look forward to collaborating on this much needed topic. We just recently have received several referrals of girl's with Rhett's for AAC evaluations. Something we do not see very often.

Comment by anne marie on May 26, 2008 at 6:06pm

I just viewed Grace's video- very powerful and moving.

Comment by Glenda Anderson on May 27, 2008 at 9:53am

Thank you for getting this going. I too work with several girls with Retts and would love to share stories, resources, thoughts and ideas.

Comment by jane flood on June 24, 2008 at 8:26pm

I am looking forward to sharing ideas and learning from all.

Comment by jodi gregory on August 24, 2008 at 9:32pm

i am a new member and have been working with a girl diagnosed with rett syndrome for approximately 2 years. we were able to teach her requesting with a talk tech box and she is able to to request over 30 items from a field of 6. we are going to be borrowing a tango and will begin to teach her to use it during the next few weeks. im hoping we will have success!!!!!!!

Comment by Wendy Homlish on September 12, 2008 at 7:25pm

What's up with everyone this fall?? Anyone attending CTG? I would like to get our Dynavox rep out for a trial of the DynaMax - anyone had any experience with it yet?? Thinking about it for one of my girls who has trialed MyTobii...

Comment by Rose-Marie Gallagher on January 8, 2009 at 7:43am

Just wanted to share this training opportunity with anyone in the Maryland area:
http://www.matcoop.org/training.htm. Linda Burkhart has done some great things with kids having Rett syndrome. Ooooh, I wish I could attend! If anyone in our group gets to go, I hope you will report back to us all.
Rose-Maire

Comment by Jamie Pender on January 12, 2009 at 8:46am

Hi everyone - I'm an SLP working with a 4 year old girl with Rett trying to get funding for an eye-gaze device either the MyTobii or Dynavox Eyemax. We've had both reps come out. They both have their advantages and disadvantages...
Dynavox advantages = it's more portable (my girl is mobile)
Dynavox disadvantages = it's difficult to calibrate eye movements and i've been very displeased with the customer service with Dynavox

Mytobii advantages = it seems to run on better, more advanced software that is capable of doing more. Eye movements were easily calibrated, customer service is great
Mytobii disadvantages = it is not as portable and it costs a FORTUNE.

Has anyone submitted to insurance for one of these devices recently? I know with the economy the way it is insurance companies have been denying, denying, denying...

Comment by Rose-Marie Gallagher on May 11, 2009 at 7:13am

Does anyone know of a person in the New Jersey/Pennsylvania area qualified to provide an independent educational evaluation? I am in contact with a family in that area whose daughter with Rett--and her school--could benefit from outside expertise. Thanks!
Rose-Marie

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