We Want So Much

 “So Much” is a term best reserved for a parent whose child cannot tell her/him what he wants to eat.  Last evening, I had to guess how many leftover pigs in the blanket Greg wanted for dinner.  Our “so much” is measured only in terms of the normalcies that most families take for granted.  SO MUCH, because it is a lot, buckets full of a lot to hope that someday our children will ask for what they want.

 “So Much” is reserved for a parent who is her/his child’s best friend.   Greg’s dad, Jay, is Greg’s best friend, not age-appropriate, but best, nonetheless.  Jay and I have no regrets about that; like all parents we wish he could communicate and have typical friendships to enrich his life, but father/son is wonderful.  “So Much” because what will happen to Greg when his best friend Dad pre-deceases him and he is left behind?

So much” is best reserved for a parent who cannot hear the joys and sorrows of our children with autism because they cannot share them with more than a scream or a smile or a gesture. We want that verbal communication so much.

When I was watching CNBC a few weeks ago and saw that Roche Pharmaceuticalss has a revolutionary new autism drug awaiting the next stage of development, I was hopeful again.  Again?  AGAIN.  Over the years, I have jumped on many a bandwagon of treatments for Greg.  Families remember the B vitamin craze as well as the DMG which we were told would change our lives.  Families also remember having their child’s poop analyzed for deficiencies, excesses and all manner of abnormalities.  I remember back in the day when they were shooting a med right into the children’s abdomen with the hope of ridding the body of harmful toxins!  (We didn’t try that one, but we considered it!)  These drugs were ineffective in treating Greg’s challenges.

However, we are in a new era of discovery and the brain studies done by various universities and other researchers offer a glimpse into what causes autism.  This time, I am truly hopeful.  If you can get to the cause, surely you can find a solution?  Roche is going to do it for our family as well as for myriad other families who hope for increased speech and social relationships in our autistic children.

Greg has amassed 30 plus years of untold stories.  He has lived with us, resided in a group home, and is now back with us.  Surely there are stories to tell.  How did he feel when he saw the Grand Canyon?  He seemed bored.  Maybe it was just a big hole in the ground to him?  In his bathroom, one sees a picture of him sitting on the wall overlooking Niagara Falls.  He is smiling.  Why did he smile when he saw that beauty and power?  How about belief in Santa Claus?  Does he really believe a man in a red suit flies around the sky, delivering presents to children all over the world at Christmas time only?  To see him rip into his presents, one would think so.  When Bert and Ernie entertain him, are they talking directly to him?  He is engrossed in their conversations, yet cannot produce fluent speech himself.

Message to Roche:  We are counting on you.  We don’t care how much this drug costs.  We recognize the amount of research, testing and trials you have to go through to perfect this drug.  Perfect it.  We will buy it.   Other families will buy it.  Life is short, and Greg has a lot to tell us.  

 

 Greg’s family

Greg’s family

Greg knows we are his family.  I believe that in my heart.  How nice it would be to hear those words again.  I haven’t heard them since losing Greg in Park City, Lancaster, PA.  When we found him, he uncharacteristically and shockingly said, “You are my family.”

 As Greg walked down the stairs from his bedroom, he paused to look at these pictures, smiled and walked down to the kitchen.  I wonder what he thought of the new display.  Here’s to Roche helping me find out...