Saturday, March 29, 2014

"Where's he going?"

I hear this many times a week.  Cesare watches his twin glide out the door and turns to me, "Where's he going?".  Just answering him brings me to tears sometimes.  "Band practice, town to meet friends, the dance, the library, LaCrosse practice, Nick's house, the movies.   He has a date, a game, an interview, a college visit, a meeting, an errand to run, a life.  Cesare has none of those things.  He wants them very, very much. He should curse at the sky and shake his fist and scream that it isn't fair, that epilepsy has cursed him.  But he doesn't.  Cesare says, "Oh".  But I see the look, I see they way he settles a little deeper into the couch..preparing for a long night of Xbox or reruns of Buffy, the Vampire Slayer.  

Yesterday he saw his one and only, sometime, friend making out in the hall at school with a girl that shy Cesare has had his lonely eye on.  He was quite simply devastated.  He talked about it long into the night last night.  "Why not me?  What's wrong with me?".  That question and the answers we give our sweet children are not so different whether they are typical or special children.  But the reasons, the real reasons differ significantly.  Cesare spent so many years severely drugged that we refer to that period of time as "the coma".  He lost many years of trial and error and maturing in the ridiculously complicated world of growing up.  He approaches his peers the way one might have at age 14, but those peers are 17 and 18 now.  How do you make up for lost time?

I have exposed Ces to every opportunity that I have been able to dig up.  He has been in a number of "social groups" for teens.  This fall he said to me, "Mom, I don't want to only socialize with special ed kids anymore".  He had a point.  Ces falls into an atypical group.  He is not developmentally delayed and though he is frequently grouped with peers who have Aspergers, and that appeals to his intelligence, these are kids who are not likely to provide opportunities for him to practice social skills.  Currently he is in a speech group, made up chiefly of teens on the spectrum. Recently he eloquently described one young man as one who hasn't "learned how to gauge his listener.  He just keeps talking about his subject.  But his eyes never meet mine."

Thank God he has a twin.  Griffin provides normalcy for Ces as well as running commentary on what is cool and what is stupid.  "Not those socks, they're too high.  Don't say that...don't wipe your nose on your sleeve".  Higher learning.

"Where's he going?"  Griffin is going to college in five months.  Where are we going?





2 comments:

  1. Hi Amy Kate, My name is Beth, I am the mother of two wonderful kids aged 6 and 4. My 4 year old has epilepsy, GEFS+ with no developmental issues. So we have "normal" life but as you know there is a whole other world going on in your head with the watching and waiting. I really like your blog and am glad you started it. This sounds really melodramatic, but it's helping me through a tough time. I'm sort of finally accepting our fate after 3 years of seizures and there's a level of despair I haven't had up to now. Knowing someone out there has weathered it longer than I, and came out on the other side with a sense of humor and a life is really encouraging. All the best to you and your family.

    ReplyDelete
  2. Hi Beth. Thank you for your comment, and for reaching out. I'm sorry your family is on this journey. It is a hard road, but we do survive, don't we? I wonder how your 6 year old is getting along. I think it is so hard for "typical" siblings.
    Well, yes, a sense of humor is imperative I think. If we didn't laugh...well you know how that saying goes.

    Hope to hear from you again. And all the best to your two peanuts and you too.

    ReplyDelete