Over the years I’ve learned a lot of valuable lessons in life from my daughter Laura. One of the most important lessons she has taught me is that people with disabilities are often only disabled to the extent to which they have yet to acquire tools and technologies that enable them to succeed.
Laura is now 22 years old. While attending school I could never convince educators that Laura could indeed understand what people were saying or that she could indeed communicate in her own special way. I worked for years with teachers and therapists using Laura’s non-verbal communications dictionary (that was also published on page 227 of the first edition of the Rett Syndrome Handbook).
Unfortunately, educators could never seem to muster the patience to communicate with Laura on the same level that she and I enjoyed. I decided that such an effort would have required much more time and individualized instruction than could ever be possible in the schools that Laura attended.
Over the years I never gave up on Laura and have worked for years to find the communications equipment that might make a difference in her life. After trying more than a half dozen different low-tech and high-tech systems and devices, I am pleased to report that we found a device and software (Mercury II) more than a year ago from the folks at a company called Assistive Technology.
Today Laura un-buckled her wheelchair seat belt, which is quite a feat for someone with very limited hand use. When I asked her where she was trying to go, she used her communication device to tell me “outside”. Then she quickly switched screens and began to “talk” about the birds she so dearly loves to observe.
Laura never ceases to amaze me with her determination imagination and spirit. I wonder what she will tell me tomorrow?!
Stay tuned for more on Laura’s adventures in "Rett Talk"!
Janine Battistone
This is SO encouraging for me!I long to “talk” with Brooklyn so much! I look forward to hearing more from you and Laura!
I have a 2 year old with Rett, and I’ve been terrified that she wouldn’t be able to communicate things with me. When her neurologist told me there was technology that assists to communicate, it didn’t make me happy, which was the response he was waiting for me to have. Instead, I was devastated that she would even need something like that in the first place. Your story has made me long for my littel girl Adeline to tell me she wants to see birds. This technology is not meant to put separate them more, nor is it something to shy away from. It is working with your daughter for her to express herself, and anything that will get my little one to share with others her feelings and opinions, I am all up for it. Thank you for sharing that experience with others, it gives me hope.