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Posts Tagged ‘handicapped’

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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?

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Assignments from God are there to help us grow.

I miss Erma Bombeck.

While sorting through files recently I found a scrap of newsprint which I had clipped from our local paper.  Turning it over my thoughts raced back nearly 20 years when her column “At Wit’s End” was a twice weekly must read.  For those who never had the chance to become acquainted with Erma’s charm and wit, she was known, and probably still is, as a great American humorist.  I’m not sure if that adequately describes her, but it’s a start.  No doubt she was a devoted wife and loving mother because her mainstay was poking fun at child rearing, homemaking and living in suburbia.  Much of what she wrote began with a good laugh and often ended with a few tears, or she could reverse all of it leaving the reader chuckling the whole day.  Or you could just be filled with the profound and clever wisdom of it all.

The column I had pulled and filed away was so very poignant.  I suppose that’s why I tore it out and kept it all of these years.  Erma loved to play God and she was very good at it.  Well, maybe not play God; she was more like a reporter standing next to an assistant angel watching them at work.  She wrote about humanity’s relationship with God fairly often, which made us think, ponder, smile and feel good.

Special motherhood was the subject matter of my yellowed copy as Erma visualized God hovering over the earth deliberating which mother would get which spirit child as God and an angel made notes in a giant ledger.  The day’s work also included assigning an exceptional patron saint selected because of his or her strengths.  “Give her Gerald,” God instructed the angel, after assigning twins — probably two adorable, rambunctious, high-spirited boys — “Gerald is used to profanity.”

Progressing nicely in their labors, God passed a name to the angel and said, “Send her a handicapped child.”  Puzzled, the angel asked, “Why this one God?  She’s so happy.”

Explaining, God said it wouldn’t be proper to give a handicapped child to a mother who didn’t know laughter.  “That would be cruel.”

Continuing, God listed the qualities this woman had:  Patience – but not so much that she would drown in despair feeling sorry for herself.  She won’t have time for a pity party.  “Once the shock and resentment wears off,” assured God, “she’ll be fine.”  Then he told the angel how He had noticed her feelings of independence and self-worth that He found rare, yet so necessary in a mother.  The special-needs child required a mother who could do for the child what was needed and still be her own person.

With caution the angel informed God that this independent woman didn’t even believe in Him.

God just smiled, assuring the angel that He would take care of that.  “She’s perfect, with just enough selfishness.”

Stunned, the angel asked, “Since when is selfishness a virtue?”

God nodded to the affirmative, explaining that she would have to separate herself from the child on occasion, or she would never survive.  Then He went on listing all of the blessings that would come with this child of need.  How the mother would never take for granted the growth of her child, how just hearing that first, “Mama” would be a miracle, and how generous these children are with their love.  “I know that she would teach the child of my creations, seeing and knowing them as she had never seen them before,” confiding in the angel that this child would be blind. The angel agreed, and God concluded, “She will never be alone, for I will be with her every minute of each day.”

Curious the angel asked about the patron saint.  “A mirror will suffice,” God smiled.

All of this, of course, gave me cause to wonder about His assigning caregivers to an ever-growing number of people with Alzheimer’s.  For sure, there are countless members of the human family with special needs even if that need doesn’t appear until later in life.  Previously, I have talked about my friend, Madalyn.  Light heartedly, we remind one another that we don’t remember signing up for this job.  And yet, the assignment was/is ours just as parents with children having special needs learn to accept and live with what’s given to them.

So what are some of the hoped-for character traits which God might have seen in us?  Wow!  I wonder if He remembered that most of us – whether caring for aging parents, other relatives or our spouse – aren’t young anymore.  We used most of what were the best parts of “Us” bringing up that batch of children He sent to us early on.  So, now we’re running on leftovers?  No matter though.  Let’s see what those leftovers might be and what worn-out qualities we’ll have to reorder.

  1.   Patience:  Not a lot left, but I’m slowly acquiring more.  I no longer plead, “Give me patience and I want it right now.
  2.   Strength and energy:  The tank is pretty near empty, but I’m surprised how much I can muster up when required.  However, I have been known to sneak away and take a few naps.
  3.   Wisdom:   I didn’t have all that much when I had our first baby, but I managed to gather some by the time they were grown.  Whether it was enough I’ll never know.  My mom used to say, “It’s a shame that age comes so quickly and wisdom so slow.”  But what I did learn applied to children and young adults.  Now I must begin all over again gathering applicable wisdom for an adult with special needs, and it’s different.  I can’t sit down and reason with Ken about his attitude and how it might have a negative effect on his future, and then remind him he should make every effort to change his thinking.  If he listened at all he would probably say something like, “YOU!  You don’t know anything!” Any new wisdom I might receive will have to be applied to me so I can become a better caregiver.
  4.  Sense of self and independence:  I believe I still have that.  Being my own person has always been a blessing.
  5.  Tears:  God didn’t list them in Erma’s column, but tears go along with empathy, sympathy and love.  Besides, living in a state of perpetual mourning tears are commonplace, and are necessary as part of venting.  I’m sure most women, including mothers of special-needs children have a goodly supply of tears.  Typed on the prescription bottle is, “Use tears as needed,” but they often spill out during unexpected splashes of joy, and random acts of kindness.
  6.  Selfishness:  Yes.  I have my share of selfishness too.  And God’s reasoning is so good.   It is prudent to have some kind of life away from our needy charges no matter what our age – without any guilt.  We do have to take care of “us,” or we can’t take care of them.  Just as the instructions on the plane tell us: “Place the oxygen mask on you first, then the child.”  “ME FIRST” is a must-have attitude.  That advice belongs to all mothers and caregivers alike, but never “Me first and only me.”
  7.  Vanity:  That wasn’t listed either.  I would say to the angel that in this case, like selfishness, it is a virtue, and one of dire importance.  Not a narcissistic kind of vanity; I’m referring to humble vanity.  (Now, isn’t that an oxymoron?)  Nevertheless, when we look our best, we feel and do our best – at least we do better while striving for best.  Motto of the day: comb hair, brush teeth, touch of makeup and put on a clean shirt.  Get dressed every day and no sloppin’ around the house in a bathrobe.
  8.  Laughter:  I believe a good hardy laugh shakes down the woes leaving room for joy and other good feelings.  I have always tried to be best friends with laughter.  If it has slipped away, renew the relationship. Find where it’s hiding and bring it into the living room so it becomes part of the family.
  9.  Acceptance:  It may take a while, but no one can fight “what is.”  This is where life has taken me, and many of you, and there is no escape for the dedicated.  Might as well sally forth into the tomorrows and make them as good as possible.  Besides, nobody knows how many tomorrows are left.
  10.  Call home often:  God was certain we could do the job, and whenever we need to talk, He’s there.  He said so in Erma’s column: that he would be there every minute of every day.  Not only because he loves us, but He so appreciates us for doing some of his work, and caregiving is God’s work — especially when it’s done with a glad heart.

Oh!  And by the way, I believe Patron Saint Gerald has been reassigned to me for those times when my patience tank is running on empty.

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