Hyperacusis

The Bane and the Beauty of Social Media When Your Child Has Special Needs

Kate WelchLeave a comment

We’ve all been there. You’re having a really difficult day so you go to Facebook or Instagram for a quick mental escape. At first it’s fun to scroll through and see what everyone is up to, but then it hits you.

Everyone looks so happy. Everyone is doing something you aren’t able to. Everyone looks carefree while you are trying to figure out how to get poop handprints off a wall. You’re trying to figure out how to make a nutritious meal out of Kraft Macaroni and Cheese and ramen. You look to the pile of laundry that is so old you need to add more laundry before you can even begin.

Here’s the thing: the pictures of the happy people are often illusions. They are often the one spot in a difficult day. The poster, special needs parent or not,  may be having just as challenging of a day as you but that one picture gives them hope to get through the rest of the day, so they post it.

When your child has special needs, Facebook envy is even more compelling. As I write this, there are gardeners loudly spreading mulch with various machines throughout the community in which we live. About every 180 seconds Caleb comes to me and says, “Man go home. I don’t like man.”

We have worked with his developmental pediatrician and his therapist to figure out why this bothers Caleb so. I think it’s a combination of fear (because the men wear masks), sound which hurts Caleb due to Hyperacusis, and disruption of his routine. Nothing helps and today will be a very long, very difficult day.

A few moments ago, Caleb left his room to come and tell me again how much he doesn’t like the man. I stopped typing, went to hug him and he pushed me away and began hitting himself in the forehead with both hands. Trained for years on how to handle this, I kept my face neutral and asked if I could do joint compressions on him, which he allowed. They calmed him for a moment but then he screamed, “Man go home!” and hit himself again before returning to his room.

This week a dear friend’s son, who is exactly my Caleb’s age, graduated from boot camp with the Marine Corps. My heart swells with pride for him and his family, remembering the little boy with chubby hands who ran through my house giggling in glee. I study this young man’s official Marine photo and marvel at all he has gone through in three months to earn this incredible honor. When my mind pipes up with “Caleb is still completely floored when he hears a lawnmower” I shush it and focus instead on the glowing family surrounding their amazing son.

I’ve written before how Caleb should be a sophomore in college now. It’s easy to forget this until I see pictures of his peers and all they are doing. I know I would have different worries if he was away and I remind myself of that often.

On one of the many special needs support groups I follow on Facebook, a mom wrote of going to a carnival with her family. Her four year-old daughter is on the autism spectrum and it was nothing short of a miracle that the family made it through the day without tantrums or meltdowns. The mom wrote of the victory of this moment. My immediate thought was that they probably passed families who looked at them with envy, wondering how they were able to have such well-behaved children.

We can’t know everything from looking at a picture. We can’t really know anything. We can’t know that perhaps the couple having the expensive meal is drowning in debt. We can’t know that the happy-looking family on vacation is dealing with untold stress that they keep to themselves. We can’t know, so what good does it do to think beyond the picture?

Moses, Caleb’s favorite Bible dude, had it right when he brought God’s Commandments down from Mount Sinai. All of the Commandments are sound, but “You shall not covet anything of your neighbors” is particularly applicable today.

Parents of children with special needs are often so broken from years of diagnoses, doctor visits, sad school reports, exclusion from social events and even more dire diagnoses that we are living below the surface. I had a physical therapist tell me that even my breathing is affected—it’s shallow because I am in a constant state of fight or flight. Like today, do I fight Caleb’s intense fear of the noises outside and try to help him through it, or do we take flight and escape the sounds, only to be 100% committed to do that every time there is work in our neighborhood?

It is so, so hard, believe me, I know, to stand our ground and try to work through difficulties. It’s exhausting and it draws upon resources that are already depleted. If looking at photos on Facebook or any other site pulls you down, maybe a sabbatical is needed. I have several friends who have tried this and felt great relief. We didn’t used to know so much about our friends. Perhaps when we are already feeling excluded and challenged by our lives, it’s best not to see what everyone else is presenting as their life.

On the other hand, I find great comfort in the support groups on Facebook. We share stories, offer comfort or solutions and just commiserate. Like I hope this blog does for anyone reading it, these groups remind us that even though we face inordinate challenges on a daily basis, we are not alone. We are never alone.

When your child has special needs, at whatever level along the endless spectrum of abilities, it’s natural to compare your life to others. My incredibly wise grandmother used to say: “If you’re going to be jealous of anything in anyone’s life, you have to be jealous of everything in their life.”

Her words echo in my head constantly and leave me able to say, with full sincerity: “If Caleb had to be born with all of these challenges, I am so grateful and privileged to be his mom.”

It is my hope that in peeking behind everything you may see on social media, you are able to say that too.

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The Thing I Forgot About New Year’s Eve

Kate Welch3 Comments

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.