Just Because We Do Things Differently!
63Or, Is It Us That Are Different?
There are so many unanswered questions about how a disability happens. I think the biggest question is why did it happen to me, or someone we love? Cerebral Palsy is of interest to me. The research and medical information explains that CP is caused by an injury to the brain at or near birth. It can be caused from many things such as a lack of oxygen to the fetus, an infection that could be no fault of the mother, just as other infections come about. It could be caused during delivery by a Dr. not handling the body correctly and somehow damaging the base of the neck. There are many descriptions of exactly how this birth defect happens. It really is of little help when the damage is done. There are many stages of CP, some are totally disabling, and leave the child with some serious mental retardation. The other end of the spectrum is mild mental retardation and disabled enough to not be able to function independently. Those I think are the most difficult. The person is just below the ability to function independently, but aware enough to want to function independently. I don't know if this stage of someone with CP is really able to ever become fully independent. I see it in a person and think, if there had been earlier disciplined training, would that have helped? If there had been earlier intervention on many levels, would that have helped? However, there is a need to work daily to assist these individuals and little help available without a hefty fee, or so the world would have us believe. Among the frustrations of caring for a person with a disability, whatever the disability might be, is the daily care that this requires. There are some honest and heartfelt helps out there. The unfortunate role that the person with the disability plays is that many times they cannot function in a high enough capacity to do all of the research time and attention to find these helps. Many times we find that there is so much red tape, so much everything that everyone gives up. Check into the government pages for advocacy groups, do all of the research available. Look at the Better Business Bureau statistics. Do not pay someone to handle affairs that could be handled by well funded government agencies. So many avenues, so little time to do the research. Some of the key words are: Support Coordinator, Daily Living Coach, Local Advocacy Councils or Statewide Advocacy Councils, start with the word Disability Help or Assistance. Take a day that you can devote many hours on the phone and keep a pen and writing pad handy. Write down the disability, the needs, the age of the person, the health condition of the person, the availabilty of help and the lack of availability of help. Many times this help falls on a couple (and I do mean a couple) of family members, mostly the older family members like grandparents. Don't give in to a hopeless state of mind though. The reality of success for the disabled is on the caregiver, encourage the disabled person to learn as much as they can about what their disability is all about, keep updated on all of the laws, all of the newest resources. You can become an advocate yourself without even giving yourself the credit. Contact Legislators, Senators, Washington. Encourage the disabled person to be as active as possible in these affairs, who better knows the need than the person in the shoes of the circumstance? I am not suggesting that all helps for the disabled are dishonest. Many are in a business and serve a grand purpose that deserves payment. I am however, suggesting that one does the research, question what kind of services/warranties would be available after payment. Pay careful attention to details. I wish you well as we serve the least so that they can become the greatest!
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