Neverland Without a GPS

I wanted today’s blog to be all about the amazing, wonderful, spectacular Night To Shine Prom that Caleb attended on Friday night.  It was one of the most beautiful things I have ever witnessed.  Caleb and all the other attendees were ecstatic and I swear you could feel the joy that emanated from each of them.  The room actually glowed.

But autism has reared its ugly head once again.  That’s how it is.  You can have such great highs and then, sometimes only minutes later, they crash into a million trillion tiny sharp shards.

Caleb is absolutely obsessed with weather.  He checks his iTouch and my phone constantly, looking for the icons on the weather app.  He doesn’t understand that the icons represent really good guesses, not guarantees.  He can’t understand Fahrenheit or even the numbers, but those icons are crystal clear to him.

Particularly the one that shows snow.  Caleb hates snow.  He hates when school is cancelled for any reason.  He loves school—everything about it.  He hates when his routine is disrupted.  He hates when we are forced to stay in the house, even if we didn’t have plans to go anywhere.  Snow represents all of the things that cause him great distress.

We live in an area of the country that doesn’t receive much snow.  If I had to guess, there is maybe one storm a season.  We don’t have enough snow removal equipment in our town so if it snows, it stays on the roads, usually on top of an ice layer, until the weather warms enough to melt it.  I have lived all over this beautiful country, and I know how to drive safely in snow, but I won’t venture out on icy roads.

These are the conversations we have had today (there is no school today for President’s Day):

5:03 AM Caleb: “No snow today.”

Me: “Yes, Caleb, it will snow but we are safe in our home and I have fun things planned to do later.  Go back to bed.”

6:47 AM Caleb: “No snow today.”

Me: “Yes, Caleb, go back to bed.”

7:43 AM  Caleb: “No snow today.”

Me: “Go back to bed.”

8:17 AM Me: “What would you like for breakfast?”

Caleb: “No breakfast. No snow today.”

Me: “How about waffles?”

Caleb: “No snow today.  School tomorrow.”

Me: “I don’t know if you will have school tomorrow.  It depends on how much snow we

get.”

Caleb: “I don’t like snow.”

Me: “I know, honey, but there is nothing we can do about it.”

I will skip the rest of the morning, because these conversations were repeated about three times each hour.  At lunchtime, because the snow hadn’t started, I took him to his favorite restaurant.  We drove down his favorite road.  I told him we could spend the afternoon baking chocolate chip cookies and watching his favorite movies.

It didn’t matter.

As soon as he finished his lunch, it began again:

1:07 Caleb: “No snow today.  I don’t like snow.  I want school tomorrow.”

Me: “I know, honey, I wish you could have school tomorrow.”

Caleb: “I hate snow.”

Me: “I know you do, honey, I’m sorry.”

Caleb: “How many snow do we have?” (this means “how many days do I have to put up with this?”).

I work very hard to always be truthful with Caleb.  There is little in the world he can trust—he doesn’t know when the next health challenge will strike, he can’t understand so many things and he can’t really control anything in his own life.  So my answers to him are heavily weighted with truth.

Me: “Honey, I don’t know.  Maybe two days.  Maybe three.”

Caleb: “I want to hit snow.  Snow go home.”

I remember when my daughter was little and she would hurt herself, maybe fall and skin her knee or bang her shin on playground equipment.  We would rush together, and I would pick her up and smooth her hair, telling her it was okay.  She would look me in the eye, take a deep breath, and stop crying, then wriggle out of my arms to get back to playing.  I ache to be able to comfort Caleb in that way.  If I could, I would commission Spider-Man to shoot his webs all over the clouds and hold in all the snow.

Here’s the thing: I love snow days (and I know this is annoying to people who have had over eight feet of it so far this year).  They are so rare here.  Snow days, to me, are pajama days with hot cocoa, board games, and movies in front of the fireplace (not all at once of course).  I love the soft pelting of snow against the windows.  I love the complete change of the topography of my street.  I love the hush and peace and quiet.

But for now, peace and quiet are not to be.  Autism robs the families it strikes of peace and quiet.  It imprisons those who suffer with it, and by extension it imprisons the families.  I love my son with every cell, every single fiber of my being, but I hate the autism that creates anxiety and pain for him.  I hate the haunting distance it creates between those who love the affected and the affected themselves.

Sometimes I get a glimpse of who Caleb might have been without autism.  It’s a millisecond of clarity, of connection, of which Caleb is usually incapable.  I don’t love that boy any more than the one I am privileged to mother, but I wish I could talk to him, just for a minute, and ask him how I can comfort his doppleganger.  I want to ask him what he needs from me.  I want to learn how to calm him.  I want to ask him if he’s happy.  I want to learn more about the soul who lives within the impenetrable glass box of autism.

For now, I just try to gather the strength to answer the same question, in all its variations, multiple times a day.  For now I give him comfort in the only way I know how.  For now I try to make his life as peaceful as it can be.

I will do the same thing tomorrow.