If we live long enough we may all end up with special needs.
I noticed in Erma Bombecks’s column, which I referred to in my last blog, that she used the word handicapped in reference to children with special needs. How easily “special needs” rolls off the tongue in today’s world. It was one of those descriptions that came through evolution during the pre-politically correct era. Words have made it through transition since words began, and often that’s a good thing, but the emphasis on being politically correct I find irritating, if not a paralysis of speech. I’m one for calling a spade a spade – for example: when clothes come back from camp they are covered with dirt – dirty, dirty, dirty! They are not soiled, they are dirty – even filthy. In other areas I strive always to be kind, keeping my words sweet in case I have to eat them, but I also believe in the 1st Amendment. However, being p.c. is not the issue.
The word handicapped is a good word to replace when its reference is health. Any story you may have heard about its origin beginning with beggars in London holding their cap in hand as they plead for a handout is not true – a myth – an urban legend. Handicap has been a word used in sports dating back to Scotland and golf, and you hear it often in horse racing. Why, around 1913, someone decided to use it for children who were born less than perfect no one knows. Handicapped was expanded to include adults and people with mental disorders around 1950. That’s another “why” question when the word was, and is, doing so well in sports. Disabled became its replacement, and many thought less-abled was even better, and whether it’s p.c. or not, special needs seems to be the most descriptive – especially for children. I like disabled for adults rather than less abled. The less part sounds so contrived and leaves questions hanging.
Ken and I have seven disabled great-nieces and great-nephews, all belonging to our niece, Carla, and her husband, Chris. Following the birth of their first child, who barely made it through a very premature delivery, the doctors warned the couple that any future pregnancies would, no doubt result in more preemies. Furthermore they were advised that this baby would have considerable cognitive loss, wouldn’t be able to see, possibly not walk, and then mentioned there may be more disabilities they didn’t even know about – if she lived at all. Nothing mattered as the couple waited the endless weeks while the fragile life ebbed and flowed, and gradually took hold. Strong in their faith they knew they could handle anything. “Just let her live,” was their fervent prayer.
Amazing could be the word, but no doubt it was more faith, humility and God’s plan that brought the tiny girl into near normalcy with her whole life spread out like a blossom-covered meadow. Yes, Aurora was a miracle. “However,” explained Carla “we now know God was preparing us for something else. When we decided to adopt, rather than risking more early deliveries, because of the unknown factors surrounding Aurora’s birth, we had already come to terms and accepted the idea of a child with cognitive disorders, cp, seizures and the like. When the case worker asked if we had ever thought about a child with one of these – we just cracked up. The truth is God knew our children before they were even formed, and He knew Chris and I would not be willing to step forward — too daunting. So in his incredible wisdom, he used Aurora to prepare us. We never knew what a blessing her birth would bestow on each of us.” They wanted a big family so the couple began adopting children with special needs from around the world; their disabilities ranging from mild to severe – which is all in the eyes of the beholder.
As an extraordinary teacher Carla works in a school district with a wide range of students and lifestyles. Many of the parents have more important interests than their children – leaving their youngsters with special needs of a different kind: some are neglected – spiritually, physically and emotionally. Some suffer from various kinds of abuse and many are just hungry for love and a sense of belonging; all of which fits beautifully into Carla’s loving and giving nature. Her experience—vast.
Both she and Chris have given their children the best of all gifts: a loving family, which is number one. Additionally, the two have never bothered making an issue of any disabilities their children possess. “Special Needs” doesn’t necessarily mean special schooling or classes, but it could include two prosthetic legs, a hook for a hand and muscles that don’t always obey. Yet, it’s taken by the family as almost incidental.
Their beautiful little brown-skinned girl with the dark hair and near-black eyes was found living on the streets of Puna, India and did need special classes to teach her limited mind. She remains the beautiful brown-skinned girl with dark hair and near-black eyes. Even experts in special education were limited in what they could teach this child from the streets. She has, however, inched along in her progress to be the best she is able to be. With no background and no family history, much of her remains a mystery. Nevertheless, she has grown into a happy, functioning (for where she is) adult.
All of the children are grown and constantly buzz in and out of the Oregon family home. Their lives are very normal and they are either continuing in higher education or working at a job — or jobs. These young adults have a different understanding of disabilities, expressed by their parents right from the “get-go,” “Our theory has been that some of us are disabled now, and the rest of us are just temporarily able.”
I think of the irony played on humanity by the fates and find this thought process very true. I look at my husband, with his AD, and realize he is disabled: both mentally and because of his cognitive decline he is becoming physically disabled. Ken’s parents were disabled in their old age as was my own mother. My dad, with no mental disability still needed help physically. We moved him from place to place in a wheel chair, and because of his worn-out knees, he relied on a walker to get him safely around the house. I suppose that made him somewhat disabled. Perhaps the absolute mark of disability is having a placard which allows parking in a “Disabled Parking Only” area, and even that isn’t necessarily accurate.
It would almost seem that in the cycle of life we begin by being totally dependent on others for our well-being, and at the end of life we again are dependent on others. Following the death of both his parents, Ken was determined that their fate would not be his fate. Consequently, he began to take extra care of his body, making sure of a goodly amount of exercise: running and gym workouts, and keeping himself in general good health. Noticing Ken’s unusual strength and his still well-developed body, his caregiver Crizaldo has said, “Mr. Ken defies age.” In that respect, Ken did achieve his goal. Physically, he would still be a very able-bodied man if it were not for Alzheimer’s.
I do believe there is a message here. Many aging adults, and I’m the first to say “but not all,” are disabled. Disability does not always have to be part of growing old although it is the road often traveled. For those striving to remain able bodied, we all know the best way to keep on moving is to keep on moving. I sometimes wonder if Ken, when we are helping him out of bed and he becomes as rigid as a board (which is totally self-imposed) isn’t doing what comes so naturally for him: stretching — exercising. In this case he’s doing isometrics, and he is making his caregiver and me his opposing force. After a few pulls using us as resistance he relaxes, cooperates and gets up. How’s that regimen for keeping in shape?
Aromick's Blog 