What's New/News:                                             Vol. 2, Issue 4

ADVOCACY NEWS

On the other hand, we all need to be aware of sensitivities to insecticides. Some individuals with disabilities cannot tolerate the chemicals. I would recommend good medical intervention and advice for those individuals who cannot tolerate the chemicals and the insects.

Get It in Writing!

My law school experience has provided me with a sobering reminder to get everything in writing. I applied to the University I attend because of all the programs they offered in their glossy Bulletin (without mentioning the limitations to enrollment in those programs). One program especially convinced me that this school was the only one to attend and I was fully qualified for it. The law school has two and a half years of my money and guess how many of those wonderful programs I have had access to--none. Even I can be fooled.

So my warning to you in dealing with bureaucracies and administrative agencies including school districts, hospitals, rehabilitation centers, etc. Get the guarantees in writing. Some of these places will promise you the sun, the moon and the stars for your insurance money or, in the case of schools, to get you off their backs. Do not believe anything that is not in black and white and signed.

I worked with a child not too long ago whose mother was furious about the treatment her child was receiving from the school the youngster attended. The mother must have spent hours ranting about the terrible program the child received. However, when I sat down and read the Individual Education Plan for that child, I could find nothing that the school was doing wrong. In fact, the school followed the plan to the letter. The mother had agreed to the plan and even signed it. She had no one to complain about other than herself. The mother had allowed herself to accept a program with which the mother really disagreed. (Of course, the solution was simple. Another Individual Education Plan could be developed with which the mother and the school concurred.)

The moral of the story is, when dealing with a school district, agency--Get Everything in Writing. Make sure you agree with the plan. Read the fine print. If you are not sure, contact an attorney or someone who knows the system well. Try not to be like me and learn this lesson the hard way.

Chromosomal Disorders

It is often difficult for me to believe how one small misplacement of one chromosome in the early division of a human embryo can completely alter the life coming into being. The tiniest error can change the life to come of both the baby and his or her family. For example, an extra chromosome in the group D of the human’s normal 47 chromosomes leads to trisomy 13,14 or 15, all usually fatal within the first two years of life. In the group E, an extra chromosome can result in trisomy 17, another syndrome fatal within the first few years of life. The birth of a child with any of these anomalies can devastate a family both emotionally and economically.

Not all such misplaced chromosomes are fatal, however. An extra 21st chromosome results in a child with Down’s syndrome. Down’s children may be retarded. They may have heart or gastrointestinal deformities. Their appearance is often unusual but easily recognizable by the general public. These children can live into adulthood and become productive citizens. An extra 45th chromosome leads to Turner’s syndrome, which also results in a child with differences who can lead a productive life.

Another syndrome recently brought to my attention is Alfi’s Syndrome. Only about one in five million children have this disorder (compared with Down’s which occurs in one out of about every two hundred live births). In Alfi’s Syndrome, part of the ninth chromosome is missing. The symptoms range from mild to severe retardation, facial deformities such as cleft palates and low-set ears. They often have low muscle tone. There is a Chromosome 9P-Network available which I am attempting to locate.

The only way to know if a child will be born with a genetic disorder is by the mother undergoing an amniocentesis. That procedure is performed by a physician when the mother is about eight weeks pregnant. A small amount of amniotic fluid is taken from the sac that surrounds the baby in the mother’s uterus. That fluid is studied and within about a week, the physician can give the mother a report. An amniocentesis is not 100% effective but it is fairly accurate. This test can help a family plan emotionally for an unexpected child with special needs.

Arthritis

Okay arthritis sufferers, I have been hearing whining lately about the weather affecting your arthritis. It is hard to get out there and exercise when you are in pain. However, for most arthritis sufferers, such as myself, exercise is not only acceptable, it is recommended. Find out what your doctor suggests as far as exercise and start moving. Most of the deformities and other problems from arthritis happen because of a lack of movement. You just have to grin and bear it. Believe me, I know it is much easier to crawl into bed with some painkillers but that inaction is probably the worst thing you can do. If necessary, join an arthritis support group.

Karen

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