One of those days

Just so people reading my blog don’t think we have this great life where we chelate, everything goes smoothly, and my son is totally cured! I sometimes post about trying times. We all have them, and it’s hard to talk about them. My son is currently on round 122, and on anti-virals. Generally he does pretty well on his rounds and seemed to be feeling well this week. One of our most trying issues is with his sensory symptoms.

Last night should have been a wonderful family celebration because his older sister was receiving academic awards at school. We did not have a babysitter and dad had to work very late. So it was me and the kids. It’s always me and the kids. We had taken him last year and he did pretty well so I thought well maybe we can do it again. Wrong assumption.

The auditorium is packed, and the school band is playing.

I had a gut feeling all week that it wasn’t a good idea to bring him. Not that I had much choice in the matter, no one wants to baby-sit when your child has autism. What was I going to do? Tell my daughter “sorry we can’t go?” Yeah, I don’t think so. So we packed his bag of “things to do” that keep him calm.

We ate dinner before we left. We talked about how it would be at the ceremony. What noises we might hear, how long we might have to sit there. He was seemed alright about going.

We got there and took our seats in the middle of the auditorium. The band begins to tune up  their instruments. My son covers his ears shrieking “that band is horrible! Why do the sound so awful?” I explain that they are “warming up” their instruments and they will sound better when they start to play.

Behind us is a row full of loud adults who are yelling to the people seated in front of us. (Heard of texting morons?) But anyway, they are yelling over us.

My son wants them to shut up. He says they have no manners. He’s right.

As the band is playing and people  are yelling my son began to crouch on his haunches in his chair and cover his ears.

Then the expression he always gets on his face when he’s in auditory pain. Uh oh. Now what? This doesn’t usually end well.

I try to console him and we talk a bit while he enjoys hopping in his seat. The noise gets worse and he curls into a ball and begins to cry. I continue to try console him. It doesn’t work.

We move our seats to the very last row in the back of the auditorium so that there will not be a row of people behind us yelling.  That lasts about 5 minutes and he’s panicking and freaking out. He tries to hide in my arms but it’s not helping. My son breaks down into tears and says “get me out of here, get me out now!”

I am trying to hold back my tears. The ceremony hasn’t even begun. I take him out into the hall while my daughter stays seated. I try to calm him down out there hoping maybe I can at least hear the ceremony from the hall.

He tries to smash himself into the corner of the room behind the stairwell. Every time the band plays louder or people clap he’s shrieking, covering his ears and crying. He demands to leave. I can see he’s in pain and this is torture for him.

I take him outside and call dad at work to ask if he can pick him up on his way home. That won’t be for another 40 minutes.

I text my daughter to let her know we are in the hallway but it’s still bad and I’m going to have to take him outside. People stare at us with pity but no one says anything. You can see what they are thinking. “What is wrong with that kid?” If he were 3 years old no one would think anything, but he’s 8.

I take him outside and he says “that’s better. I couldn’t take it in there. I wanted to scream”. I look up at the sky and think…yep this is my life. We can’t do anything like normal families do. It’s not his fault but it’s also not fair to his sister.

The sky is dark and looming which ironically reflects the moment. I feel a few raindrops. We head for the car because my son hates rain on his skin. So we have to hurry, we have to “run for it” he says.

I’m getting too old to run, I’d rather get wet but that isn’t an option. We make it to the car and get inside. I feel broken but he’s better. He tells me he’s sorry but it was just too loud in there. I reassure him that it isn’t his fault. He can’t help it.

He takes out his MP4 player and starts one of his movies and we place it on the dashboard. He says “we can pretend we are at the drive in!” I’m say sure, why not.

Next time I should send my daughter into the ceremony with live streaming video feed so I can watch it from the car. I text her to tell her we are in the car but I’ll be back in as soon as dad picks him up. She says it’s OK; they haven’t begun calling her class yet. I still feel guilty.

It rains so hard you can’t even see outside the car windows. We get lighting…..he shrieks and crawls onto the car floor and hides his head. I explain for the hundredth time that it’s alright. We are safe in the car. It’s loud but we’re alright. Eventually, he climbs back onto the seat and starts playing with ALL the buttons and levers on the dashboard. Oh joy.

We spend 40 minutes in the car doing whatever we can to keep me sane and him from breaking all the switches in there. I did not picture myself hanging out in the car like this when we left the house tonight.

Dad arrives. It’s pouring out so I have to rush my son to dad’s car under cover of a sweatshirt because he hates the rain. I feel some relief that at least my son can go home and be safe. I hate when he has to suffer, I don’t want his world to be so painful.

I fear I have missed her awards. I hate this.  I hate choosing between my children.

They leave and I run back into school so I don’t miss anymore. I arrive just in time to see her walking back to her seat with her award. Damn it!  She says its ok mom; you couldn’t take pictures from way back here anyway.

She is a brave and understanding young lady. She understands that things are just different for our family. That doesn’t stop the guilt I feel. We stayed for the rest of the ceremony and she received some more awards that I didn’t miss. I tell her how proud I am of her.

She points out a classmate with Asperger that she helps all the time. She gets it. She defends her classmate against bullies.  She has insight into how difficult his life is because she has a brother with it.  She knows that her brother may never walk across a stage to get an awards because he may never be able to attend a ceremony.

Autism robs you of some of the parent moments in life that should be joyous. This happens more times than not in our house and to families all around the world affected by autism. Like every holiday. It’s hard to swallow but I imagine it’s worse for my son.

Just remember, the next time you see a mom in the hallway with a frantic big kid…don’t judge. Our children are not spoiled or bratty. They are in pain. They need us to help them.



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