Keep on amazing us Raymond! - August 31, 2011

Our family just got through a very busy and hectic summer.  With Lil’ Roman in football and both of the boys in summer school, I feel like I blinked and our summer was over.  Raymond did have his 13^th birthday and is now an official teenager!  Wow…how did that happen?  As the days fly by, we have these beautiful life experiences that happen and touch me in such a way that I think…I SO need to blog this. But then the days get hectic and I don’t have the time sit down to write.  So here I am….sitting in a tire shop waiting for new tires for the van, figuring that I have at least a full hour of not being able to do anything else, but blog.  So as I sat down trying to remember all of those beautiful events that I told myself I needed to blog…I have slept since then and can’t remember them now…..oh brother!  But there is some exciting news that has the entire Lara Family very excited!  How do I begin to explain?  See, Raymond is a very complicated kid, he is non-verbal, first because of his lack of muscle control from the Cerebral Palsy and second because he was born with a profound hearing loss and even with hearing aids he was not able to hear spoken language.  In 2004 through answered prayers and a special “trial” for children with special needs, he received a Cochlear Implant from House Ear Institute and he has been hearing now for over 6 years..  But since he still can not speak, communication with him has been very difficult and involves a lot of mind reading.  He does not have the control in his hands to be able to use communication boards or other forms of augmentative communication.  Over the years we have tried many different augmentative devices with no luck at finding the perfect fit.  Two years ago we had a trial with an amazing “eye-gaze” system that uses the eyes as the mouse to control a variety of programs for communication.  Raymond is such a social kid, always has been even though he is non-verbal, but during this trial at Kern Assistive Technology Center, Raymond was too busy flirting with the company’s beautiful sales rep that he paid no attention to the computer screen, that’s our boy….”Flirt Master Ray.”.

Well, this summer we tried again, thanks to the help from Margie, an amazing speech therapist with Terrio Therapy who was instrumental in coordinating a meeting with the sales rep from Tobii, a company which specializes in Augmentative and Alternative Communication (AAC).  Margie arranged this meeting for Raymond to use the Tobii Eye-Gaze system while at an appointment at House Ear Institute for Raymond’s Cochlear Implant Review.  Although the sales rep was another beautiful woman and Raymond was flirting like crazy, he was still engaged in the screen and began opening and closing programs with his eyes.  All of us in the room were so blown away!  At one time during our appointment, there were 8 people in that small room all watching what Raymond was doing. We drove home that day on cloud nine!!!  Could this be a possibility?  Could Raymond be able to learn how to communicate using a computer with his eyes, starting with very simple programs, like being able to tell us when he needs to use the restroom, or to tell us he has pain or doesn’t feel well, or his likes or dislikes?  Since Raymond was a baby, he has always been very aware and observant of his surroundings, and engages with family, friends and even strangers.  He has also developed the ability to answer simple questions most of the time with a head nod or shake side to side; it is just hard to tell at times because of his limited head control.  

After the successful trial at House Ear Institute, we scheduled another appointment with our local Kern Assistive Technology Center (KATC) and the speech therapist, Sandy (Picture at bottom).  Once again the beautiful rep with Tobii met with us and set Raymond up with the eye-gaze system.  I thought we were impressed at House Ear, but this was Raymond’s second time with the system and he did even better!  I wish I could fully describe how my heart was jumping out of my chest watching Raymond control fun programs using his eyes and enjoying them!!  We are now in the process of getting the needed doctors prescriptions, letters of medical necessity, speech evaluations and so forth to send to the insurance companies so we can request a month long trial with the system to see if Raymond can learn to successfully communicate.   

I love being a mom to our two amazing boys, but they did not come with instruction manuals.  I don’t know where we would be without all of the help and support of professionals in our community.  I have to thank Margie Madamba from Terrio, for her interest in Raymond’s communication needs and her dedication in finding answers.  I have to thank Sandy Poole with KATC and Kathy Leonard from House Ear, for their thorough SLP  assessments.  I don’t know if this would have even happened if it weren’t for Aaron Markovits and David Mensch with Kern Assistive Technology Center (KATC).  David, who uses augmentative communication devices himself, has always believed in Raymond’s abilities and knows what a smart cookie he is.  Plus I think David taught Raymond some of his flirting tips…..no more of that David!!!

I learned very early on not focus on what Raymond couldn’t do, but to focus on what he could do…..because that list of “Can Do’s” has grown by leaps and bounds and continues to surprise us!  Go Raymond!

Sandy Poole & Raymond at KATC