HOPE

We went to see Garrett yesterday for the second time since he has been placed in a residential training facility about 90 minutes from here. Before the first visit, we had to wait a whole month to see him while he adapted to the structure of his new life.  He is doing very well, which is a conundrum to a reasonable person.  His life is so changed, so many things cannot be provided (like a computer or a swimming pool), that my sadness is overwhelming when there.  He is not sad.  He lives in the continuous present.  He was thrilled yesterday because we were going to spend the day at the beach.

IMG_20150724_135310242

The image above is from our first visit.  He was brought out from the dorm area, and there a reddish Abe Lincoln stood!  Perhaps the shaving was not a priority that first month.  We got over it; we know he does not like to shave.  This time, he was all cleaned up.  He said that he thought he should shave before seeing his parents.  His idea!

IMG_20150810_135202543_HDR

We had a great seafood lunch on Pawley’s Island before heading out to the water.  We loved this beach. Having been a South Carolinian much longer than Glenn and Garrett, and not being much of a beach person, on my rare visits I usually chose Isle of Palms.  It was familiar.  Have been also to LItchfield and Edisto and Folly.  Knowing that Isle of Palms is billed as a family beach, our expectations were similar.

It was different even from the parking.  Almost each block of the island, there is a diagonal space for about 10 cars.  This is the first limitation for a small and sweet beach.

pawleys island 1

There is nothing commercial on this beach.  It is not a problem; the restaurants are not but five minutes away.  There were so many athletic families on the beach yesterday practicing with kayaks, surfing, stand up paddle boarding, children swimming two to an inner tube.  Singles read in the dusty sand, and  moved their lounges often.  The tide was coming in and not leaving much of a beach at all.  They knew; they were locals. Easily my best beach visit.

There was no teen angst, no parading of bodies, all that stuff we have come to expect.  I focused on a teen girl.  She was so passionate about what she was doing.  About seventeen, unconsciously beautiful, hair pulled back loosely into a pony tail, she kept running into the surf to load wet sand into a cooler.  At first I thought she was using wet sand as a good base for a sand building project.  Smart and experienced.  Then she used a large circular net with uneven edges and drug it in the water over and over and over.  Her work produced nothing.

She was a special needs child, just like Garrett.  Garrett did not notice her as he was in the water most of the time we were there.  He loves the waves coming in on him: the repetition of it.  But Glenn noticed her.  Parents of these children have antennae.

pawleys-island-beaches

Garrett loves girls.  He thinks about them a lot.  But he will not speak to peers unless spoken to.  It is just how he is.  We have had a goal of resolving this issue as long as we three have been a family, but it just is not happening. Same thing at his new facility.  He is no problem for them, but he does not initiate conversation.

We did not speak about the girl until we dropped Garrett off.  Yes, Glenn had noticed her.  But what does one do?  Start a conversation with a family leading off with “We noticed your daughter drags a big net in the water….  See our son out there letting the waves crash against him? ”

It was just a day on the beach where two special teens did not notice each other.  But in this general population, there are so few girls.  Autism with all its associated problems is such a boy’s condition.  It was hopeful as a mother to see this girl.

But that is an awful thing to say!

Advertisements

AUTISM AND MR

This post is my opinion.

Autism is very topical right now.  A billboard on the way to my son’s school says that “1 in 88” children will be diagnosed as such.  We all know children with this label.  Are more autistic children being born these days?   Is it due to what we eat, or breathe, or the stress of our lives, or old sperm?  We do know now that it is not because of inoculations.  That is a very bad message that won’t seem to go away.

Autism describes people with social problems, difficulty in communicating, living in fantasy rather than reality.  My step son did not speak until age three, and that is a very common occurrence in the diagnosis of this disorder.   He reads, writes, goes to school.  He is comfortable with adults, but not with children.  He does not speak to fellow students at school or at church unless directly asked a question.

His pediatrician, my friend, said at his first appointment with her:  “Remember, he is not like us.”  What she was saying was do not analyze his behavior with regard to logic, or what we would do in a similar situation.  His brain does not process the way ours do.

His longtime teacher told us to try to train him in more complex tasks than simply to carry out an order.  I asked him, thinking about this, to go to the studio, and bring me two pens that were sitting on the round kitchen table.  When he came back, he had been to the studio, opened up an old jewelry salesman’s case (not an easy task in itself) in which I keep little hammered aluminum items that I collect, and brought me the top to a small condiment bowl, and an aluminum hair clip.  This task was beyond his capability.

We are changing his schools this fall, and got a new “physiological” done for his entrance into his new school.  His IQ, now a combination of several measurements, rather than just one, is well below 70.  He has the diagnosis also of MR, mental retardation.

“Mental Retardation” is a very politically incorrect word.  Probably because it was so misused by boomer kids, being awful to their fellow boomer kids.  Even in a medical environment, a person is more likely to ask “And is his diagnosis MR?”, not using the actual term.

With regard to my son’s behavior, it is what he does not understand that is the biggest problem, not who he will not talk to.  He is described as autistic because that is easier.  It is not as hurtful.  I think that is why we are hearing this word all the time.

The confusion gets worse.  The new edition of the DSM eliminates Asperger’s Syndrome as a special sub category within autism.  No more Asperger’s, just autism.  The problem here is that Asperger’s is getting cool.  The population sees these people as quirky socially, but brilliant in a special area, which is true.  My son is not this way, although he can make some pretty remarkable connections in looking and thinking about maps.

temple grandin

We heard Temple Grandin speak a couple of summers ago at the SC Autism Society meeting.  She was wonderful, brilliant and pure.  She holds a Phd from the University of Illinois, and is a professor at Colorado State University.  And she has autism, in the former form of Asperger’s syndrome.

She is a leader in the humane handling of animals, designing appropriate means of their harvesting for our food.  HBO produced a movie in 2010 under her name.  We were able to view the movie one night, and meet her the next morning.  What an amazing person she is.  And famous.  During her talk, you could “feel”  some of the pride that people with Asperger’s have.  She was talking about Silicon Valley.  This was just after Steve Jobs had died.  She said, “I can say this now, that without the math-aspies out in California, there would BE no Silicon Valley”.  These people have found their place, and ways to deal with their quirks.

If you have a diagnosis of MR, you don’t have simple quirks, that’s for sure.  But if you have a diagnosis of autism and MR, as many do, it is much easier to refer to the whole package as autism.

https://leemalerich.wordpress.com/2012/11/15/vincent-and-garrett

THE 47 PERCENT, AND CONTINUING TO BE PRODUCTIVE

It is odd going through some of the life changes that used to be only abstractions.  There are different ways of looking at the same thing.  Am I at 61 the same type of person as my grandmother, born in 1904,  at 61?  I don’t think so.

Does the new Social Security payment being conveniently deposited into my checking account means that I am on the dole, redundant, using money plus interest contributed for a working lifetime,  or what?   When is the government giving me money  not earned?  Money has always been an illusive thing for me;  having enough not to have to think about it, abstract.  Having money in a few months that is not connected to current work activity deposited into my checking account?  Unbelievable.  It seems like a happy base.  To be sure I can go on making the money from art that is normal for me, and not go beyond my earnings limit.  Work has not changed.

Mr. Obama described our social safety net in his inaugural speech as something that makes us stronger as a whole, minimizes the terrible luck of the draw that some of us experience, so we can all go on being productive.  “The commitments we make to each other–through Medicare, and Medicaid, and Social Security–these things do not sap our initiative; they strengthen us.  They do not make us a nation of takers; they free us to take the risks that make this country great.”

Through this statement and the upcoming arrival of my social security,  the path to more creative work is in my radar.  Is this an investment in me or my art, or am I lucky enough simply to have lived so long?  Having received many grants and fellowships in my career, this feels about the same.  Not worrying about money means you can use your mind on more interesting thoughts.

But it is always something.  Robert A. Heinlein said that “man is not a rational animal;  he is a rationalizing animal”.  Plus the fact that I am a boomer.  We are unable to accept what is happening to us, we are selfish individuals, and perhaps this is what Heinlein is speaking about.  I simply cannot be that grandmother in a house dress!  Of course, that grandmother in a house dress never got her own social security; she never “worked”.

In addition to interacting with the aforementioned government program, we are applying for SSI for our 16 year old child with autism.  Now for sure we  fall into the famous “47 percent”.  What do I say to those who criticize me?  That at least we waited until he was 16 (my wealthy stepfather did not apply for social security until he was in his eighties: he did not think it was fair to the country)?  How else would we get job training, and get him to and from that job?  How do we pay for a child, then a man, who might always live with us?  How would we pay for the training regarding every domestic detail of independent living if he is lucky enough to experience that?

Things are getting even stranger.  We are now told that our son with autism should have been enrolled in Medicaid when he was diagnosed.  That was at age three.   His doctor visits have been totally normal all his life up until quite recently.  We have his pediatrician’s notes from birth.  Lately, he is on some medication for anger, but thanks to Wal-mart, his meds are only about eight dollars a month.  I am wondering about this one:  it seems excessive.   I do know that when we need help for his anger problems, and he is getting bigger and stronger all the time, the facility in SC which performs the service of stabilizing meds takes Medicaid.  We could not pay that bill alone.

So here is the plan.  We apply for Medicaid, and wait for the next anger incident. We hope we are not injured.  Our social worker writes up a “critical package”, and then he can go to the facility for a week or so and get his meds managed.  Professional analysis.

Four years ago we were married in Rome.  Glenn did a flip using a Segway and landed flat on his back on the Piazza del Popolo.  Two women immediately called an ambulance, he was taken to a hospital, thoroughly examined including an x ray  and given a prescription.   No charge.  Italy even does this for tourists.  Doesn’t this seem simpler?

See:  COMBAT WITH THIEVES OF TIME/Waste as a Way of Life and VINCENT AND GARRETT/Waste as a Way of Life

VINCENT AND GARRETT

Here are buddies Vincent and Garrett.  Both on the autism spectrum, Vincent plays a little higher.  They were in school together for years before Glenn and Garrett moved here.  As little guys  in special ed classes together,  later they both were partially mainstreamed into middle school.

They ate lunch together every day in the cafeteria.  They never talked much.  Garrett still is having trouble talking in the cafeteria.  We think they need to, they do not.  Who is right?

When I came on the scene, Garrett had very limited eating habits.  He would eat mac and cheese, pb and j, pizza, some fast food, and a sobering amount of snacks made of chemicals.

Glenn had his hands full.  A single parent with one autistic son and another always in trouble, he did not have the time to deal with eating habits.  Two hours was spent getting to and from work, then an eight hour or more work day, domestic activities …it was amazing that he did what he did.  He also was the only child of two aging parents who could not take care of themselves.  Whew.  Experimenting with Garrett’s food weirdness was way down on the list.

I have been successful doing two things with Garrett:  I got him to eat, and got him to run.

When first around,  Garrett encountered me sauteing garlic and onions on the stove prior to spaghetti sauce or whatever. He was nauseated, and ran to his room.   He couldn’t stand the smell.  And I know for a fact that great cooks will saute garlic and onions on the stove to fill the space with wonderful aroma, whether those items are in the recipe or not!  With work and about two years, he will eat anything now, but he was very self restricted in the early days.  Last weekend, the last bugaboo was extinguished.  He ate a fried egg at his uncle’s house.  Did not say a word.  I can now say that he devours ANYTHING.  And everything.

No so back in eighth grade.  He and Vincent ate mostly silently every day.  Garrett ate peanut butter and jelly, tiny carrots, two cookies, juicy juice, and potato chips.  Same thing every day.  He did this even while he was getting broader at home  at dinner.

One morning, no peanut butter.  Glenn never let this kind of event happen, but I did.  If we did not have several things to buy, waiting until more needs accumulated seemed reasonable.  The unbelievable was the result.  Garrett  took a chicken sandwich to school with mayo and spinach leaves to boot!

Later that day Vincent said, “Chicken?”.  Garrett said “Yes”.  End of story.

Garrett had a four day weekend last spring and Glenn took him home to visit.  They went to his old school to see teachers and friends.  The following was Vincent’s reaction to seeing Garrett after maybe eight months here.

And then this.

Look at the reaction of the teacher in the background.  This is huge for two autistic buds!

CREATING PEACE

If not creating, I am invisible.  It is that simple.  When creating, the process is energizing.  Get up, write a blog post, run four miles, shower and begin to create.

Busy with outside things in the last week, there have been no blog posts, only some running, and little created.  I used to say that making art justified my existence.  Now that justification is more complicated.  The art must be made, and written about.  What used to be enough is not now.  Are we all more public people?

Lately the focus has been on our fifteen year old autistic son and his anger problems.  We have met the most amazing man, a behavior analyst, and have learned to look at behavior through many lenses.  People with autism are so interesting.  They are unique.  Having some characteristics like us, we think that we know what is on the table, but we can be fooled.

Garrett used to love working in work books, math and language, around grade four.  Here he is taking a break from his work on the back porch.

He is a runner as well, and is sporting here his SC Peach Festival shirt won at the South Carolina Peach Festival, and his first 5K race.

The second picture is his face when he is “posturing” and an angry event might be starting.  We used to call this “angry eyes”.

Now through precise examination of how these events unfold, we may in the future be able to stop them in their tracks.  Through being observant and smart, the posturing might be the only part of his anger episode allowed to be displayed.

Our third picture is the happy boy we want around all the time.  He was thrilled yesterday meeting the behavior analyst.  Everybody loves attention.