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Carolyn Locke's Blog
Sometimes the path we are on is not the one we had intended. Thus began my life with Audra.
How could one little person bring so much joy and pain? How could one little person teach me so many lessons that most people never learn in a lifetime? And how could I be given a greater gift then to see people with disabilities for their inner selves and not as what the world see's them. This is my journey, no one else's, this is what I have felt and laughed and cried over. I wish you well on your own journey, wherever that may lead.
Week of July 31, 2009
Thursday August 6, 2009
Posted by: Carolyn Locke at 11:09AM PST on August 6, 2009
We were in a small pub in our town visiting with friends and relatives. Several feet from us sat Audra and her little brother, Jake. He was playing a video game, while Audra watched him. While she watched her brother play the game her usual river of drool rolled down her chin. We were most used to this and not bothered by it. The pub was busy with bodies enjoying beer and fish and chips so I kept my eye on my kids to make sure they were safe. It was then I noticed a big scary looking biker type of guy looking at Audra. Again, I was used to people looking at her because they were usually wondering about her disability. The biker guy walked over to Audra and without saying a word bent down to her level and with a napkin gently wiped the drool from her chin. It was one of the most compassionate things a stranger had ever done for her and for me it changed the way I percived people and stereotypes. I learned that random acts of kindness can come from the most unexpected places and people........
Posted by: Carolyn Locke at 10:51AM PST on August 6, 2009
Although Audra's body was very impaired physically her mind was not. Up until she turned 3 years old, life with her had been a series of guess's about what she wanted and if you got it wrong it really made her mad and she would yell and scream at you. Having a child who is unable to speak with her voice can be very challenging. It was Mrs. Peacock at the County OH class who taught Audra to look up for "Yes" and to look down for "No" God Bless Mrs. Peacock, for she opened up Audra's world and helped us to understand her wants and needs so much more. Life with Audra was no longer just a guess, it was now narrowed down to 20 questions or less and she and I were much happier for it. Other people could talk to her now using yes and no questions, even her little friends and little brother could talk to her now. She still used her eyegaze to communicate much of her wants, but now I was able to confrim what she wanted so much easily. Parents often wonder why it is important for thier children with severe physical impairments to learn a consistent "yes" or "no" it can make all the difference in the child showing others they have cognitive ability. Had Audra not learned a "yes and no" she may never have qulified for the wonderful Augmentative Communication services she would later recieve from Katie Krabbenschmidt and from Stanford Rehab. Augmentaive communication was a process that took years to evolve and master, but in the end Audra was able to talk to anyone she met using her augmentative communication skills. Tuesday August 4, 2009
Posted by: Carolyn Locke at 1:04PM PST on August 4, 2009
When you have a child who is physcially challenged you know that equipment is expensive, thus parents often find a need to be creative in adapting ordinary toys to suit thier children's needs. Audra had cerebral palsy, spastic, quadraplegia. She could not sit unsupported, had little use of her hands and legs and poor head control. Audra's car was one of our first and most successful adaptions. We purchased a rugged battery powered ride-on toy Jeep. The seat was low in the Jeep with the control in the middle. We bought an old car seat at the Thrift Store and cut it in half, using the upper part as a back rest, this my husband bolted securly onto the Jeep. We then added a strap to secure Audra around the chest, no strap was needed around her waist as the Jeep was made so that it would hold her in. Next my husband added a soft somewhat pliable pipe that fit over the joystick to extend it and make it taller, then he reversed the entire joystick and control panel so that instead of having to push the stick to go forward Audra could use her limited hand and arm motion to get her arm around the joy stick and pull it backwards thus propelling herself forward. Obviously this was a toy that had to be used with much supervision, but she was able to move it forward and at times to turn it left or right. It gave Audra a bit of mobility at a very young age and she enjoyed it immensley until she outgrew it. It also was a lot less expensive then buying a "custom made" car. At that time no company sold anything adapted like this, still if you compare the cost of a new "car with adaptions" and making one yourself, you may find the cost well worth it.
Monday August 3, 2009
Posted by: Carolyn Locke at 2:10PM PST on August 3, 2009
I often hear the phrase "That parent is in denial" I have come up with my own phrase and that is that "each of us gets there at our own time" It wasn't so much that I was a mother in denial, my friends will tell you I was not. It just was that I couldn't quite comprehend the consequences of my daughters cerebral palsy. You see, I had never met anyone as disabled as Audra would be. It was hard to look at this perfect little girl with ten fingers and ten toes and "get" that she would never walk, or sit up, or crawl. I have come to learn over the years that sometimes denial is a good thing. Sometimes it is a coping method that works well when we are on overload. It took time for me to absorb the extent of Audra's disability and to cope with it. It was a difficult journey, I loved my child and to my mind to not accept her disability would be like not loving a part of her. It wasn't until her death many years later that I would come to terms with what my truth really was. It was okay for me to love my child, but to hate her disability, what it took from her was cruel and although it's journey was rewarding and filled with gifts it still took a toll on all of our lives. I learned that a person and a disability are two different things, separate from one another..............
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