Tuesday, November 16, 2010

Parenting a Child with Cognitive Issues

I was just watching part of a movie called "A Child is Waiting".  I didn't see much of it because my child was waiting for me to change the channel.  But I did hear this angry parent instructing his autistic child's caregiver to "just give him everything he wants and make him happy" because he is has a cognitive level of a five year old.

I just have a few things to say about that attitude.

First of all, if your child has the cognitive level of a five year old, I envy you.  You can talk to your child and get an answer.

But seriously, if your child is "stuck" at 5 years old that means that he or she is going to be 5 for a very, very long time.  So you probably want to look into what are the best parenting techniques for a 5 year old.  As far as I know, "giving them everything they want" is light years removed from "making them happy"!  Practically no one enjoys being around an over-indulged 5 year old!  An over-indulged 5 year old in the body of a 50 year old is a big problem.

5 year olds need boundaries, security and new challenges.  They need to know that they can make mistakes and someone will still think they are terrific.  They need to know how to obey and cooperate and help to feel important.

But really, people with cognitive disabilities are never "stuck" at any age.  That's just someone's short hand method of describing a person's limitations.  Who wants to be described by their limitations?  Raise your hands.  What? No one?

I thought not.

People continue to change throughout their lives.  It's nice if there's somebody around to notice.  Sam, for example, has the "cognitive level of an 18 month old" whatever that means. But he has been at that level for about 28 years.  In that time there have been so many changes and delightful discoveries.  He has met and loved so many people and grieved their loss.  He has been depressed and elated and everything in between.  He is curious about everything and loves to investigate.  He is a precious valued member of whatever community he enters.  And he needs me to take care of and challenge him.

I need him.  I think everyone needs to be needed and Sam thrives in an environment where he knows he is needed.  He is part of a family and he is part of a community and he is wise and funny and precious.

Which brings me to what the caregiver in the movie said in response.  "The child does not know he is a tragedy.  Maybe the tragedy is in you."  Some people with cognitive disabilities are smart enough to know they are not like "other" people, but that doesn't mean they are tragedies.  "Normal" is kind of a myth anyway.  We are so much more than what we know.  Getting an advanced degree in college and a high paying job are not guarantees of a happy life.

Tragedy is a society that has upside down values.  We should celebrate the people we love and delight in discovering their unique abilities.  That doesn't mean life will be easy.  Most lives are not.  That's something we can call "normal".

Thursday, November 11, 2010

Veteran's Day, 2010

My father, Charles A Repenning - World Famous Paleontologist and WWII Hero - (at least according to the Denver Post) requested in his will that he be cremated and suggested that his ashes be either thrown off the California Coast to sift down among his beloved Elephant Seals or encased in plastic key chains and sold as souvenirs at the Society of Vertebrate Paleontology's annual meeting.  He suggested that this latter method was probably the only way we, his offspring, were going to make any money off his demise.

Knowing how opinionated, controversial and downright cranky the old guy was, I have my doubts as to how much money his remains would net us even if the key chains were gold plated.

The former idea, however, has a lot of merit.  The elephant seals that come ashore on California's beaches are extremely crabby beasts.  Off shore there is a party going on that is the elephant seal version of Spring Break on Florida beaches.  The guys who come ashore are the ones who can't find a partner in the mating game.  Dumping his mortal remains out among a bunch of sex-starved, grumpy males just seems so right. They were kindred spirits, so to speak.  I could add details, but won't.

However, 5 1/2 years after his murder, his ashes are still in my Chicago garage.  I haven't been able to arrange or afford a trip to California to dump him.

This morning we woke to discover that Veteran's Day was going to be beautiful.  Warm, sunny and fall colors everywhere.  It just doesn't get better.  And Charley wanted to get out into nature, but had an errand to do in Oak Park.  I suddenly remembered that the park where my Dad spent his childhood was a couple blocks from the place Charley had to go.  Somehow it just seemed TIME.  So while Charley did his thing, Sam and I walked over to the park.  I've been there a couple of times in the last 5 years, thinking about Dad.  This park has a few animals in cages: a red fox, a coyote, some birds of prey.  It had the same animals, apparently, 70+ years ago when my Dad was riding his bike to this park.  This is where he learned to love nature and rocks.  He and his best friend spent every spare moment in this place getting really dirty and I think it is still pretty much like it was then.  Sam and I walked around a bit and then we found a pretty remote place beside a fallen tree.

I opened the urn I had purchased for Dad and poured out his ashes.  The urn is made of a single piece of agate.  I figured, while waiting to get thrown off a cliff, he'd be happier encased in a rock like that than in the plastic box the funeral home put him in.  I had forgotten, but I also had put in a fossil mouse jaw and some of his dog's hair.  I poked those in among his ashes.  We sat there in the sunshine a little bit and thought about Dad as a little boy - full of wonder and curiosity.  Dad had come a full circle back to innocence, back to the place where he was happy before the war, before disillusionment and disappointment and bitterness.  Instead of letting him drift among rejected suitors, I laid him to rest in a place of possibility and wonder and I gave him fossils and dog hair.  He's with the places and things he loved most in the world.

 And I felt more peaceful than I have felt in 5 1/2 years.

Rest in peace, you old goat.  I love you.

Thursday, November 04, 2010

Mid Term Elections

I'm not really sure of the origins of the myth that Republicans are more religious (spiritual) and less corrupt than Democrats.  Watergate.  Do I need to say more?  Because anyone who is paying attention knows that there are seedy, corrupt and irreligious people on either camp.  It's the nature of politics, I am afraid.  There are really good guys on both sides as well.  People are, in the final analysis, just people.

I'm in favor of ending corruption and I don't mind tax cuts, but my family and I belong to several "Special Interest Groups" and I'm afraid we have just become expendable.  People with disabilities, public school teachers, home healthcare workers and (Please God) we are about to become members of the "Special Interest Group" called Cancer Survivors - we are some of the people that make considerably less than President O'Bama's often referenced $250,000 a year cut off.  (I guess if you make more than $250K you are in the "wealthy" camp.)  We are the people who need affordable healthcare without pre-existing condition clauses or penalties and a roof over our heads and food on the table.

People don't become wealthy on merit.  They become wealthy because of luck.  For every "self-made" billionaire, there are about a billion others who work as hard, are just as smart and are teachers or musicians or factory workers.  On top of that, there is the added factor of class.  If you are born into a family that has wealth and it is assumed that you will go to college, you will probably wind up making more money than someone else whose family has different expectations.  That also has nothing to do with merit.  This has been true since Mark Twain wrote "Puddin' Head Wilson" and probably true since the feudal system gave way to the market-based economy.  I heard a guy on TV say that birth order has a lot to do with whether or not you succeed.  There are so MANY factors.  Very little of financial success has to do with personal merit.  This is why I believe wealth and privilege SHOULD also include responsibility.  Wealthy people owe a debt of gratitude to the culture that allowed them to become wealthy.

Well, I think everyone should feel gratitude and responsibility toward their community.

Illinois has one of the highest per capita incomes and one of the highest tax rates and yet we do not have enough money to support schools, fire fighters, police officers, bus drivers, etc.  We do not have enough money to give everyone with a disability aid.  It is handed out grudgingly by a kind of lottery system and mostly on an emergency basis.

A government which balances it's budget on the backs of the most helpless and the least funded has lost all credibility and can no longer claim to be "democratic" or "humane" or "of the people".  I didn't know how to vote this year.  The Republican agenda seems to be to cut back on services to people like us, so why would I vote for them?  And yet, the Democrats promise to fight for our needs, but seem to be impotent.

I'm not that confident that John Boehner and his other Republican politicians really hear my voice any more than the Democrats.  Do they know people like us even exist?