Find a window when a door closes August 8, 2012Posted by adaptedworld in High Tech Toys.
Brooke has always used whatever skills she has at a given moment to access the world around her; however, as much as I am impressed, inspired, and empowered watching her determination, as her parent I still have a hard time watching her struggle to do things we all take for granted. I struggle even more while she suffers through losing physical function that makes the activities she has learned to enjoy even harder to do or forces her to rely on her siblings (who are more than eager to help her ♥). Her brain injury based severe Cerebral Palsy is technically a static condition but when immobile and relatively inactive children like her get older, muscles that are used less frequently can get tighter, develop joint contractions, and ultimately make it harder to keep up even a limited activity level, thereby creating a vicious cycle. In Brooke’s case, she also has uncontrolled seizures to contend with that wipe out both her energy and her physical skills, making her withdraw into her world until she recovers some, but not always all, of her functioning.
Given her severe physical challenges, you can imagine how my interest has been captivated watching the eye-gaze technology that is being developed to allow children and adults with limited physical control to more easily interact with the world around them. Brooke’s visual difficulties complicate her use of such technology so I’ve been watching from the sidelines, hoping one day that it would be affordable enough for Brooke to try and use in some meaningful way. In the meantime, I found watching old videos of what she used to be able to do bittersweet. Although I can never get enough of her joyful spirit, I hate to recognize the reduction in her quality of life that followed the loss of her left arm reach (that spun her spinning wheel, landed on a switch, touched her computer screen, or touched an Ipad). Watching her struggle and disengage when it was too hard to activate a switch finally spurred me into action to try an eye gaze device with Brooke.
A short email to Tobii enquiring about a trial was quickly answered by a local representative who brought the device to our house. Brooke woke up that day and was seemingly having a good morning, mesmerized by the technology being presented to her until—wham—a big tonic clonic seizure hit, wiping her out and making her uncomfortable. Rather than call it a day, I held her in my lap and watched as the representative showed me all that the Tobii C15 with CEye could do to open a door into the voiceless world of children like Brooke. Physically wiped, Brooke seemed to still be glancing at the device so we decided to give her another go at it, in my lap while I held her chin up. Much to our delight, the Tobii eye gaze technology managed to pick up her partially eyelid covered gaze and the representative even caught her gaze on film with the camera on my phone so that I could share it with Brooke’s fans (if you look really hard at the video you may be able to see the red dot where she is looking: yellow hat in upper left corner first, then car in lower left corner, then flowers in lower right corner).
Encouraged by both the incredible technology and Brooke’s success, I asked the representative for tips on how to obtain funding and she gave me the name of a local agency that typically conducts the augmentative and assistive communication evaluations for children with physical limitations. I submitted the lengthy application to start the process; however, ever the realist, I also recognized that it was going to be an uphill battle justifying such a device to our insurance and prepared for the many months of demonstration ahead to justify its use, if we were even able to document a justifiable use. Much to my dismay the director of the agency called directly to inform me that a child like Brooke, who has a known visual impairment [aka a diagnosis of Cortical Visual Impairment (CVI)] was not a candidate for an eye gaze device and that switch access and/or partner-assisted communication was all she would recommend for her.
Not quite ready to give up I pressed the issue, explaining that because of recent reductions in her physical skills she can barely rely on her physical function to hit a switch, especially when a seizure interferes, and that to maintain her quality of life a new way needs to be found to help her continue to access the world around her. When I said that the eye gaze technology continued to engage her even after a seizure had left her fatigued and that I have seen other children with CVI using eye-gaze devices online which were paid for by insurance, she said that I could go against professional guidelines and purchase one on our own as other families have but that she would only refer me to a rehabilitation specialist for a better switch position. Essentially, she believed that it was not reasonable to ask our insurance to cover an expensive device that utilizes a significant area of weakness that also presents so much inconsistency. However, I have witnessed my child lose strengths (for example, her left arm reach) and their associated switch access positions during the same time period when weaknesses have improved and potentially become new relative strengths (for example, her vision has improved over the years as she has learned to use it to her advantage). Such consistent inconsistency has made me believe that for the greatest success we need to have multiple points of access available in her repertoire so that, ideally, each point of access may create the potential to counteract whatever varied influence is impinging on her functioning at a given moment. Unfortunately, the $22,000 she said it would likely cost to purchase a device like the Tobii C15 with CEye on our own out of pocket is difficult to come by (that’s practically a new car!); therefore, I went back to the drawing board, trying not to be discouraged that yet another clinician had made a judgment about Brooke based on her diagnoses rather than on an in-person assessment, a judgment that is not uncommon in the world of special needs.
Around the same time as I had originally started seriously investigating the stand-alone eye gaze devices I had also been corresponding with another online family (whose child suffered a similar brain injury at birth) who was starting to use a different kind of eye-gaze technology, called EagleEyes, with their daughter. The EagleEyes system was developed by Dr. Gips, a Professor of Computer Science at Boston College. EagleEyes translates the electrical signals from eye movements (obtained by attaching electrodes around the eyes) into mouse cursor movements. Dr. Gips’ technology has been used at Boston College Campus School and is distributed to outside interested parties through The Opportunity Foundation of America, a non-profit organization committed to helping individuals with severe disabilities so they try to keep the costs incurred by the families as low as possible. I had hesitated to try this technology with Brooke because she has major sensory issues and does not like her face, head, or hair touched (part of the reason why she was a Bipap failure—she despised the headgear and masks). However, watching her struggle even more to participate in the activities she enjoyed while recovering in full leg casts post-hip surgery I was even more motivated to give it a try, using funds we were planning to use to buy a Convaid Rodeo (a compact, lightweight folding wheelchair) for Brooke that her insurance finally decided to cover.
I contacted Debbie from the Opportunity of Foundation of America, who patiently answered my questions (including reassuring me that children with CVI have had success with EagleEyes) and set up a time for their trainer, Ron to make the trip to my home from Utah to conduct the trial. Ron first oriented me to the EagleEyes device and associated software on his laptop and then installed the software on Brooke’s laptop, turned it off and then attached the device to it via a USB port.
Next he turned on the laptop, warmed up the EagleEyes device, and carefully placed the 5 electrodes that are attached to the device on Brooke after she woke up from her morning nap. Because of her sensory issues Brooke was definitely not happy having the electrodes placed on her face but once they were on and the technology began engaging her attention she quickly forgot about them (until it was time to take them off anyway).
Once the electrodes were in place all that was left to do was to open the software on her computer, check the settings, and then minimize the window (so the software stays running in the background) before selecting an appropriate program. The EagleEyes system comes with a large number of cause and effect/targeting activities (some from the Priory Woods School and Arts College for those of you who may recognize them). Brooke has always been a fan of the computer but both Ron and I were surprised by how long she played with the EagleEyes system…a marathon two+ hour training session! Ron left when she seemed to tire and returned the next day to supervise me applying the electrodes by myself! I was pleased with how they were easy to put on but I am still mastering how much connector gel to place on the electrodes (I’m a clutz so I always seem to put on too much ;D) and I am experimenting with different types of tape to use to adhere the electrodes that either doesn’t upset Brooke’s sensitive skin (the cloth tape used during the training session tends to leave red marks on her skin) or doesn’t leave too much adhesive behind on the electrodes.
Brooke’s siblings are equally as impressed with the EagleEyes system as I am and when she has used it the past couple weeks they usually like to watch and dance or sing along with the videos she triggers with her eye gaze. It is currently set to the shortest dwell time (amount of time she has to look at the target before it activates the video) while she is still learning how to use it. As she gets better we can increase the dwell time and use the EagleEyes system with any online game that has a touch screen setting. Right now she is starting with Cause and Effect games but may transition down the line to more Educational games. Playing with EagleEyes on our own so far we’ve discovered that Brooke is not interested in bullseyes as targets but instead prefers pictures of animals or figures, especially those that bring up a video with a catchy song when she looks at them.
Darker backgrounds that make the moving white cursor more interesting than the stationary target (during her original training she kept looking at a big red moving scope used as a cursor) or backgrounds with distracting elements (like the stars in the video below) are a little harder for her
However, lighter backgrounds that create a high-contrast lightbox effect and that absorb the white cursor seem easier for her
We don’t know where Brooke will take us with this technology (and even whether her vision will improve as a result of the stimulation—wouldn’t that be fantastic!) but for now we are soooo happy and grateful to Dr. Gips, to Debbie, Ron and the Opportunity Foundation of America, and to our online friend Laila for sharing her daughter’s experience with EagleEyes. Once again a window has opened for Brooke providing her with another way to easily access the world around her and we all just love that it’s as simple as using her vision!