TODAY WAS AN AMAZING DAY!!
A day Harper has been waiting a year to experience….
TODAY HARPER HAD HER DIGITAL EYE GAZE COMMUNICATION DEVICE TRIAL!!!
Thank you Easter Seals North Texas, the Retina Foundation, and Pediatric Opthalmology P.A., PlayWisely and many other individuals who believed in Harper’s abilities for helping to make this possible!
What an awesome experience to be able to watch Harper navigate the device with ease and be proud of herself for doing it well by grinning when she realized she made that happen! My heart filled with joy as all that I knew about Harper’s abilities and potential, doubted by some, was validated through this incredible device.
HOW DID WE GET HERE?
By Christmas 2011, Harper was on schedule to sit independently by her second birthday in April. She was showing signs of understanding what was said to her and making progress in this ability to respond to verbal requests. Tragically in January 2012, she lost ALL of her physical abilities when seizures dramatically increased and intensified due to a diet change. This incident led us to focus on her mental abilities which we saw as remaining on target despite her extreme physical regression. While we have spent the past 12 months attempting to regain physical abilities, such as eating, head control, etc…we have spent the larger portion of last year weeding through speech communication therapists in search of a digital eye gaze communication device. It took eight months and four therapy centers to find a therapist willing to see what we already knew about Harper’s abilities, and another two months of training with that therapist before a trial day could occur.
TODAY WAS THAT DAY!
Harper’s first attempt to learn to operate the device was through cause and effect using the “Itsy Bitsy Spider.” After calibrating her eye movement to the device, the picture on the screen was a spout on the left, a tree on the right and big blue square with a spider in it. Harper’s eye movement can be seen by watching the yellow arrow on the screen and when her eyes fix in the proper area the lock is seen by the area turning red. She has to fix her eyes for 1100 milliseconds (or 1.1 seconds) for the device to determine the eye gaze was intentional.
Harper looks at the spider on command and it jumps out of the box and runs up the water spout. Harper follows the spider (seen by a yellow arrow following the spider) and grins. She has realized that the spider was activated by her. The device sings that portion of the song.
Next Harper looks at the Yellow box that says “NEXT”. Clouds with rain move from the top left of the screen and spider slides down the spout. Harper’s eyes again follow the spider. She looks again at the Yellow Box marked “NEXT” and the sun slides from the top right of the screen. Harper’s eyes follow the movement while the song is being sung by the device. Then the spider runs up the spout again and all is done. Game Over!
Harper, however was not done! We moved on to “Head, Shoulders, Knees and Toes” and then some free play. Harper worked for 20 minutes on her first trial without stopping. We could see the fatigue in her eyes and had to remove the device so she would stop trying to activate it. At this point she became quite verbal in her dislike of us taking her new toy away!
WHAT NOW?
After much investigation (see section Speech/Communication), we are trying two device companies for 30 days, Dynavox and Tobii. Our Dynavox device should arrive in the next week or so. After a decision on which device better suits Harper, we expect Harper to have her very own by April/May 2013!
ENCOURAGEMENT
No matter what the obstacle and whether it be with your “normally” developing child or your child with “special abilities” go with what you know! We were not knowledgable about communication devices but we knew that Harper was smart and trapped inside a body that would not cooperate with her desires. So we moved forward in what we knew, focusing our efforts to help find a way for Harper to communicate what we knew she knew… you know?? So what I’m saying is sometimes you have to go with what you know, simply because you know it even though you can’t yet prove it! Today it was proven for Harper!