Neverland Without a GPS

Ah, New Year’s Eve.  Parties.  Confetti.  Reflection.  Hope.

And fireworks.  So many fireworks.

I don’t have anyone I can trust to babysit Caleb, so for many years, New Year’s Eve has been about board games and watching the ball drop on the TV.   It is what it is.

2014 was not a great year in our home, but I don’t want to bore you with all of that.  Let’s just say that last night I was filled with hope for the new year, that perhaps 2015 can be a herald of new beginnings.  A dear friend told me to pray for peace, and that is what I will be doing.

Caleb goes to sleep early so my motley crew and I were well ensconced in a card game around 9:00 last night when the first fireworks went off.  All of us held our breath, knowing the sound, the vibrations and the light would wake him up, and make him angry and fearful.  There is nothing I can say or do to calm him in these situations and it breaks my heart into a trillion little sharp pieces to see him upset, knowing I can’t help him.

Caleb has Hyperacusis, which means his hearing is too acute.  Sounds hurt him.  Add to that sensory integration disorder, and the poor kid rightfully becomes agitated very easily.  I attributed his fear of fireworks to these issues, but I didn’t know until yesterday that the fear goes deeper, rooted in his brain like the tendrils of a tenacious weed.

Yesterday morning, we saw Caleb’s therapist.  This man has helped unlock so much of what Caleb needs to say but is unable to—he’s changed our lives.  Along with fireworks, Caleb has an intense fear of fire trucks and ambulances and his therapist is helping us find a way to cope.  Caleb has unfortunately been in several ambulances and has had the first responders, the fire fighters, visit him too many times.

His therapist told me yesterday that even infants store sensory memory in their amygdala, the part of the brain responsible for memory.  He told me there is a theory that in people with autism, the amygdala is larger and therefore their flight or fight response is exaggerated.  So my poor son has locked deep in his brain the memory of his first ambulance ride, when he was about 12 hours old.  It was an almost two-hour ride.

Now that I picture that sweet baby, who was taken from me so surgeons could repair his heart, I can’t imagine how he must have felt.  I can’t imagine how it was to be born, held and loved for a few hours, then placed in a hospital crib under bright lights and have lines and needles stuck in all sorts of places.  Then his ribs were cracked open and I can’t let myself imagine that pain.  What a horrible way to enter the world.

Caleb’s therapist has told me many times that the opposite of fear is safety.  So every time we pass a fire truck even if it’s just moseying down the freeway, Caleb becomes upset.  A parked fire truck is even worse.  Ambulances racing past us create intense anxiety.  I am connecting the boom of fireworks to these other loud sounds, even if he doesn’t see the connection.  But his reaction is the same, and sometimes worse.  I tell him repeatedly that he is safe, that I am here and I will protect him but it seems that his sensory memory completely overwhelms him, and the words I toss out disintegrate like snowballs.

As we predicted last night, the fireworks roused Caleb from a deep sleep.  He came to me with bloodshot eyes, his cheek lined from where it lay on the pillow.  “Fireworks go home!” he pleaded.  “Show me clock when fireworks go home!”  My only answer, which turned out to be patently false, was, “They will soon, buddy.”  I tucked him back into bed again, hoping the noise would stop.

I know Caleb has to adjust to our world.  I know the people sending off the fireworks didn’t mean to cause chaos in our home.  I read with sadness my friends’ posts on Facebook about how their dogs were trembling from all the fireworks.  I didn’t want to compare Caleb’s reactions to a dog’s because it didn’t seem like an equal comparison.  But I still wanted to find a way to make my home soundproof and vibration-proof and light-proof.

The ball dropped and everyone retired to bed.  An hour later, I was reading and about to fall asleep when Caleb came in, his face creased with immutable fear.  He stood at my doorway, pleading, “Fireworks go home!”

I said, as calmly as I could, “They will soon, honey.”

“What time fireworks go home?” he asked, his voice going up in pitch.

“Soon, I hope, but I am here for you.  I will protect you.  Why don’t you sit in my bed until they stop?”

My words were cut off by Caleb hitting himself in the face with both hands so hard it would be considered assault if another person did that to him.

Fighting back tears, I asked him to come sit by me.  He made it to the foot of my bed and asked again, “Fireworks go home?”

I tried the deep breathing exercise his therapist had recommended.  Caleb got three breaths in before he folded in half, leaning forward and expelling a guttural scream with the velocity of vomit.

Swallowing tears that would only escalate the situation, I told him again that I was here, that I would protect him.  He ran from the room, but I stayed awake, on alert for his next visit.

I suggested his weighted blanket, but he was past the point where that would help.  He was past it when the first firework went off.

By now it was 1:00 AM and I thought the people setting off the fireworks might stop.  But the rumbles and booms continued and Caleb was soon back in my room.  This time he did consent to get under the covers and let me talk with him.  He did listen when I told him I would keep him safe.  He kept asking me to set a timer to let him know when the fireworks would stop which works in many other applications, but without knowing an end time it did no good.  Around 1:15 AM we heard the last boom.  He asked me if it was over and I said, again, “I hope so.”

I’ve said before, Caleb is still making progress.  A few years ago, this cycle would have continued unabated for hours.  It took about four hours this time, but that’s down from five last year.  I just wish there was more I could do.  I thought of going to a hotel somewhere but then laughed at myself, for New Year’s is a global thing.  Maybe the moon?  My friends and I have talked for years about buying an island where only people with special needs could live.  But for now we live with the rest of the world.

If it were sounds alone, perhaps he could handle it.  But he feels the boom.  He sees the light because even though he has room-darkening curtains, he pulls them back and then the lights scare him.  He feels the vibration on his floor.  There is no escape for him.  What torture he must endure.

Today we are reading his favorite books, maybe watching a movie.  Today is all about Caleb and helping him heal from the ordeal of last night.  And I am praying that everyone used all their fireworks last night.