AUTISM

Friends and family cannot understand how it has been lately living with a teenager who has autism.  I had an experience last night when at the pool that might explain how it is.

1-pool

As with all in life, change is inevitable.  Garrett is 16, and for all teenagers, this is a tough time.  We are struggling to keep him calm.  We walk on eggs. We are in the middle of a search to find him the correct place to go to school next year.  We are tunneling through paperwork to deal with state agencies.  Everywhere we go, we find conflicting information.  Then there are all the medical costs.  Finally, there is no appreciation of our efforts by him.

1-detail pool

I don’t know if we have a leak in the pool or what.  Seems it always needs to be filled, and we have had a lot of rain lately.  Looking at the hose under water whipping back and forth due to the pressure of the water coming out, this image made sense regarding what was already on my mind.

1-action in pool

The garden hose moves violently under the surface of the water,  responding to what seem like invisible pressures.   In the case of this water, we know about the pressure and why there is so much activity.  There is a likewise invisible pressure within our son.  He is boiling on the inside.

1-breaking the surface

Once in a while at the end of a whipping motion, the head of the hose breaks the surface and the water explodes.  It surprises you because this action is impossible to predict, even when you are watching the hose.  If you don’t want to get wet, or ruin your phone, you are never at ease on the side of this pool.  At some point, the water gets you.  You are not successful at keeping the calm.  And then the hose starts whipping under the water again.

Advertisements

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

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.