Tuesday, January 7, 2014

I Am Listening

As parents we need to monitor what we say around our kids, whether they have typical neurology or not.  A classic example of this is not to swear in front of the kids or else we may hear the same kind of language coming out of their mouths.  Aside from this, we should make sure we are not discussing in front of them things our kids are not mature enough to handle.  It is a bad habit of mine to be lax in what I say around Philip.  It comes from years of assuming that because Philip didn’t talk, he wasn’t listening. 

I now know that this line of reasoning is completely wrong, but I still have not completely overcome the habit of talking as if he were not there.  This is extremely important for me and others to get right because what our kids hear us say about them or what relates to them can greatly impact how they perceive and feel about themselves.

Yesterday a few of us adults were discussing Finley Boyle and Jahi McMath, two children ages 3 and 13, who became brain dead after routine dental and surgical procedures.  In the case of Jahi McMath, there is controversy over what constitutes death.  The hospital would no longer treat the girl who was pronounced dead after she went into cardiac arrest and showed no brain activity after a procedure for sleep apnea.  However, the girl’s family fought in court to keep their daughter on the ventilator because they said she showed signs of improving such as moving to her mother’s voice or touch and indications on a hospital monitor suggesting the girl tried to breathe on her own.  I am not going to weigh in on the ethical debate but will say it is a very sensitive topic.  A few of us postulated under what circumstances we would want to be kept on a ventilator or be allowed to die. 

As we were having this discussion, Philip was in the room and began crying.  I tried to get Philip to tell me what was wrong on his letterboard.  He managed to spell a few things which I can no longer exactly recall, but he was clearly upset about the conversation he was hearing.
Today after school and his home lesson, I asked him what he wanted to talk about.  “Death and Acceptance,” he spelled.  “Is this related to the conversation the adults were having yesterday?” I asked.  “Y,” he pointed.  “Do you want to write this for your blog?” I asked.  “Y,” he indicated again. 

As you read Philip’s response, try to see it not from the viewpoint of a medical ethicist or even an adult, but in the light of an autistic child who cannot speak, gesture, or write on his own, and who has been presumed unthinking for much of his life (and continues to be seen in that light by those who don’t recognize his communication).   

Philip’s words:

The right thing to do is always accept life.  I am sad when tons of people doubt me.  I am sad when tons of people wish I was dead.  (To which I responded, “Nobody wishes you dead.  I love you!  Lots of people do.  What do you mean by people wishing you dead?”)  People single us autistics out to not understand.  I was sad when (person) said it was not worth living if she could not communicate.  I think it is wrong to think that people who don’t communicate don’t feel.  Really upset that letterboard is easy to dismiss as utter nonsense.  I am sad each autistic must prove his worth.  Sometimes I wish I talked.  I am happy to be Mom’s kid.  I am outside normal.  I am one lonely boy.  Each day is a daring one and I will each day in each way stop you and stop the world each time it gets us wrong.

A part of me wishes Philip did not have to concern himself with such heavy and mature topics.  Shouldn’t he be talking about sports, hobbies, and the latest video games?  But I also realize autism is Philip's life.  The things he talks about he must deal with every day.  I am grateful for Philip’s ability and willingness to tell me how he feels.  I cannot imagine if I were him and had to keep all this sorrow to myself.  I think I might die in my soul.  I tell Philip to keep expressing himself to me and to the world.  Using Philip’s term, I tell him to keep “daring” the world’s perception of autism until it gets it right.  

* Philip was happy with the post this morning, spelling "I love it.  I am having interesting conversations."  Indeed you are Philip and your voice is an important one.  

**  Addendum- There are definitely good things to come out of this heavy topic.  One of the people involved in the conversation read his blog and contacted me expressing sympathy and wanting to clarify and make amends.  Since Philip was home from school for a snow day, they were able to converse over text messages and have a wonderful dialogue with a happy understanding of one another. 

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