Monday, February 29, 2016

The Sadness of Regression

Autism, as with other cognitive disorders, can very often come with your loved one regressing in their abilities. In fact, I just read that doctors are now fully acknowledging that this is not a myth or somehow misinterpretation of caregivers, but rather a reality that they must endure.

There are few things worse, I believe, than watching a person slip away from you.  I have limited experience with Alzheimer's but I cannot image the pain that family goes through when that loved one no longer knows who they are, or worse yet, rejects them.  Some parents experience their child literally feeling their speech and thought going away, which must be utterly terrifying.

A few days ago I went and got an old VHS tape of family vacations, birthdays, etc.  My daughter was particularly interested in them since she didn't know him as a young boy.  We hadn't watched it for a while.  The tape brings forth a lot of powerful and conflicting emotions.  Its hard to watch something that can bring laughter and tears to your eyes one minute, and bring sadness and more tears the very next.

When Tyler was much younger he had an extraverted personality.  He thought everyone, whether he knew them or not, would find him absolutely entertaining. He smiled, laughed, hugged, and showed everyone a lot of trust and love.  We made faces together and making him laugh was as easy as snapping your fingers.  The video shows him jumping into my arms and wanting to pretend to wrestle on the floor.  No need to wonder if he was a happy little boy, he wore it all over his face.  He liked to babble and sing and make happy sounds.

As the years went on, Tyler began to change.  You could see that the extraverted personality became more closed in little by little.   Hugs became harder to get, and when you did get them they were stiff and cold.  Speech and facial expressions had eroded away steadily.  It seemed he could go weeks or months without so much as a smile.  He no longer liked to be wrestled with or manipulated physically in any way.  Where he used to allow me to use a disposable razor to shave him, he later would not even use an electric razor. 

As a Dad it is a crushing reality to see that your happy and exuberant child is slipping away.  That this little guy who used to squeeze my neck and jump off the couch to splash down on top of me, became the young man who hit at my hands when I tried to shave him or wash his hair, was very hard to come to grips with.  I always wanted nothing more than to bring him joy and make him feel laughter and love.  It's very hard to know that things that none of us can control have severely limited his ability to feel those things anymore.

I love Tyler every day for who he is.  As his needs changed, our relationship did as well. And as glad as I have always been to spend quality time with him, I do miss those days of laughs and hugs (I'm only human after all).  But because I love him more than anything, I will support him in every way that makes him feel happy and secure.

Regression is a cruel experience.  As hard as it is to do, and as much as your heart may be breaking, we have to value each day for the person that we do have.  Then, every once in a while, grab a few tissues and allow yourself to go back and remember that person the way they were at an earlier point.

Be well and good luck.  Tom

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