Tuesday, November 18, 2008

People First

Angela and Sue made a good point on HBO today in regard to "children with Down Syndrome" as opposed to a "Down Syndrome child". I think that is a very valid observation.... and certainly something that the public has been educated on over the last decades of increased political correctness. When I look at my kids around the dinner table, I don't see the disabilities, I see the individuals--who just happen to have various disabilities. I have a hard time with the term Disabled, perhaps differently-abled would be more accurate. They each have abilities, some quite astounding, but on the other hand, lack some abilities that our culture has deemed important or normal. What IS normal?? My definition.......

Normal is a setting on the dryer.

Dana loves game shows and helocopters, does chores without being reminded, and walks a couple of miles every day. She knows dates and times of every appointment for the next year, and birthdays and anniversaries of everyone she's ever met. That is a gift!!

Richard is the chief snow shoveler, leaf raker, wheelbarrow driving outdoor guy. We literally have to call him off, or he would be out there all day..... there's lots of raking on 10 acres!! Jim takes him to the Speedway to watch the races and he loves any kind of heavy equipment. The fact that one arm dosen't work well and that he can't talk very well or brush his own teeth really makes no difference. We help him out; and he helps us out.

Stacy happens to have Down Syndrome, like Matthew, and is probably the highest functioning of the home team.... she's a girly-girl, was sort of a cheerleader in school, likes teen girl flicks, and tormenting her sister, Dana. She is very aware of what DS is, and can recognise others who have DS. She is limited only by the size of her dreams; like any of us. But, unlike many of us, she puts out a tremendous amount of effort. Stacy has had 3 open heart surgries. She is a champ. She and I are going to the High School Musical Ice Show on Sunday. High School Musical 1,2,&3 are real big around here.

Anna has CP, no speech, and an autistic edge. She is a whiz at puzzles, LOVES food.... lives only for the next meal. Although she seems very limited, she understands all that is going on around her, so be careful what you say!!

Kristina is a real redhead. She is beautiful and funny, but like Anna, no ability to speak. That dosen't mean she dosen't communicate.... we know what she wants when she wants it.!! She needs help eating and with all of her "activities of daily living", as do the rest of them.... but that dosen't make them less valuable or important. She likes anything musical or just plain noisy, and can be relentless with noisy toys.

Tom is the oldest, and needs someone nearby at all times. He is not able to do much independantly, but he is a great walker... a couple miles a day, down to the end of the road and back with one of us. He helps all of us get our exercize! He is absolutely a genius with any kind of puzzle. He sees the shapes, not the picture or color, and puts them together without missing a beat. I can't do that!!

Heather has the most involved physical problems of all. She has quadraplegic CP, almost no volitional movement, seisures, and visual impairment. In spite of all this, she is HAPPY.... all the time. She is quite intellegent, but locked in a real bad body. I can't imagine that I would be as pleasant as she is, given similar circumstances.

You have met Mac, who like the rest of the kids (I know, Iknow... they are adults... but they are and always will be MY kids) needs help with his ADLs, and will never go to college or drive a car, or own a home. He thinks a nickle buys a Baconburger..... But, he/they have taught me so much about living each day to it's fullest, loving life no matter what you are handed. They are unconditional in love and acceptance. They do not see or judge you based on the outside; they see your soul.... they see mine; and love me anyway.

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