Sunday, May 17, 2009

The Real Heroes are The Real People.

Today I realized what a silly girl I am, and what I've been missing out on by being so self absorbed: living life. I had the rare and blessed opportunity to be privledged enough to spend the day with 11 of the most wonderfully bright, intensly fascinating children I have ever met. The company I've been working for recently made a trip down to a private school for children with special needs. Some of these children have sever disabilities and will never walk, talk, or breathe on their own. Other children have what society likes to call "minor disabilities". I was able to work closely with eleven young individuals who have Tourette's Syndrome. 

Tourette's is an inherited neurological disorder with onset in childhood, characterized by the presence of multiple physical (also known as major motor) tics and at least one vocal tic; these tics characteristically wax and wane. Tourette's is defined as part of a spectrum of tic disorders, which includes transient and chronic tics. the medical condition was once considered a rare and bizarre syndrome and most often associated with the exclamation of obscene words or socially inappropriate and derogatory remarks. however, this symptom is present in only a small minority of people with Tourette's. It is no longer considered a rare condition, but it may not always be correctly identified because most cases are classified as mild. Since the incidence may be as high as one in a hundred people, up to 530,000 U.S. school-age children may have Tourette's, with the more common tics of eye blinking, coughing, throat clearing, sniffing, and facial movements. people with Tourette's usually have a normal life expectancy and above-average intelligence. the severity of the tics decreases for most children as they pass through adolescence, and extreme Tourette's in adulthood is a rarity. genetics and environmental situations can affect Tourette's, but the exact causes are unknown. In most cases, medication is unnecessary. There is no effective medication for every case of tics, but there are medications and therapies that can help when their use is warranted. There is not a medication that "fixes" it, and there is no known cure. 

as i interacted and talked to these children, i began to get a small glimpse of what their social and emotional lives may be like. persecution and ridicule from peers is the norm, and being patient with educators and other adults who make life harder out of ignorance is an everyday occurence. i was able to speak to ten-year-old willam, who experiences severe tics when nervous, upset or extremely excited. "it's about telling everybody, see? if i tell one person about TS [an abbreviation for Tourette's that is widely used by patients], they might go and tell four people about it, and THEY might tell four people each and pretty soon, you know, we'll have a million people knowing and talking all about it." at the innocent persistence of a boy set on educating the public, william's parents bill and gina, along with his school and pastor, have set up a program in which william and his peers travel to elementary and middle schools within a 30 mile radius once a week to teach other kids about the disease. parents and administrators have nothing but good to say about the last four months the program has been in full swing, with both the short term effects of the kids getting out and about and spending time in an atmosphere of fun and the long term effects of public education. william's mother gina says "the way he looks and talks when he's up there is amazing. he has this little...personality inside that was born to do this." There's not a thing in the world that would have made me miss this day, and it simply goes to show what is really important, and who really matters. I think it's time to reexamine what's going on in life and to take the bad in stride.

God, what amazing kids

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