Autism Can Be Scary At Times

For the most part, Brendon is a happy laid back kid.  He plays and entertains himself all over the house, dragging out his toys and playing everywhere.  He plays outside in his safe area, swinging, playing in his sandbox, and talking in his own language to all the trees and leaves.  However, as he gets older, any deviation in routine, refusal to let him do something he wants, or the attempt to get him to do anything longer than he wants to leads to meltdowns that can easily consume the rest of his and my day. 

This meltdown stuff is getting worse.  The other day, we were working in the yard and he was playing with the garden hose.  Anytime he gets really dirty outside, he immediately thinks he needs to go straight in and take a bath.  Halfway through the job I was doing, he came, took me by the hand, and led me into the house.  He went straight to the bathtub and started taking his shirt and pants off.  I could see he was muddy and was wanting to splash and play in the tub for awhile, but I really needed to finish what I was doing outside first.  "In a minute." I told him, trying to lead him back outside.  He wasn't happy, but I only needed about ten more minutes and I would be finished. 

This all led to him getting more and more upset a he kept trying to pull me back into the house and to the tub.  Eventually it became impossible to finish cleaning the yard with a child who weighs seventy five pounds pulling on me as hard as he could and crying.  When pulling didn't work, he started slamming into me, then he reached the point of no return, where nothing I do can stop him. He's like a runaway train and goes to another place in his mind, where all hope is lost, and I can't get through to him anymore. 

These times used to be few and far between and just ignoring him and letting him calm himself down seemed to work best, but lately he seems to keep escalating to the point where he's rocking, crying, and hitting himself as hard as he can, over and over again.  It's getting scary.  He's only five and I can't help but wonder what it will be like when he's ten or a teenager.  What will I do?  How will I physically handle him and keep him and everyone else safe?  The possibilities make me so sad.  At these times I feel so helpless. 

Right now, the best thing seems to be to turn on a fan (he likes the sound), put him in his bed, cover him with a heavy blanket, and sit beside him without touching him.  Sometimes it takes a couple of hours for him to work through it and get control of himself again, so everything comes to a stop where I'm concerned, for awhile.  Seeing him so miserable is heartbreaking.  At these moments I'm scared of what the autism is doing to him.  It's taking the happy boy I know and making him so miserable and unhappy that he seems to be trying to beat it out of himself.  I stay close, pray for him, and let him know I care, but not being able to stop it and save him from these meltdowns is excruciating. 

Fun at the Fair!

Every fall, around this time, we visit the State Fair.  Other than the delicious hot funnel cakes and frosty lemon shake ups, it's not really my thing. My kids, on the other hand, look forward to it all year. 

As Brendon has gotten older and his autism has become more "pronounced" or "severe," each year we have faced a new set of challenges at each visit.  At one time, just the commotion, lights, crowds, and noise were too much.  The next year he relaxed just enough to discover the carousel.  Then, last year he figured out the rides were so much fun that getting him off meant a meltdown and a fight to pry him off of small airplanes and out of train cars while parents and kids rolled their eyes, muttered under their breathes, and waited impatiently. 

This past Friday night, I took him and it was by far the easiest visit so far.  I had anticipated a rough time with transitions from one ride to another and since he weighs 73 pounds, I knew I would be pushing my limits to win every battle.  I decided against taking the stroller or wagon, and opted for the harness and leash instead.  Grandma had purchased him an armband so that we wouldn't have to worry about tickets, and off we went! 

At the ticket booth the lady asked him to hold out his arm and so of course I had to explain about his non verbal autism and that he would probably have an issue with it no matter where we put it.  She opted for his ankle and sure enough he immediately dropped to the ground and feverishly tried ripping it off.  She directed me to the office and the nice lady there said we could give the stuffed monkey on his harness a "collar."  Armband crisis averted. :)  I really wanted to hug the lady when she said she would call around and let all the rides know we were coming and to watch out for him. 

When we got to the first ride, the operator smiled and said, "I've already been told about him," and it continued everywhere we went.  Almost every ride waived the height rules if he was too tall or just went out of their way to make sure he had extra time to load or unload and transitioning was no problem at all!  He understood that it was okay to get off because it meant we were going to get on something else! 

I honestly don't expect him to get preferential treatment everywhere he goes, but it sure did make it so much more relaxing and enjoyable, so I'll take it any time we can get it!  ;)

New Classroom, New Teacher!

We officially survived Brendon's first day in his new classroom with his new teacher.  One of us acted like a big baby and cried and carried on for hours.  It was ridiculous!!!  That person called another autism mommy and received some much needed encouragement, so we were able to make it through our stressful day.  The OTHER one of us did great!  They didn't cry at all and were very brave.  The one who cried and threw a fit is getting an early bedtime...or I hope so, anyway.  ;)

Driving Me Crazy!

  Today was one of those days that I hit a wall.  One of those days that I've had all of the autism I can possibly stand.  I'm done.  Thankfully, I made it until everyone fell asleep and now I plan to write down my thoughts and feelings and then recharge for tomorrow. 
  I've had enough stimming, teeth grinding, jumping, destruction, body slamming, putting his hands in the toilet, fussing, pinching, falling in the floor, mess making, bouncing up and down, and spitting on his hands for one day.  It never stops.  It's every waking moment.  I love him.  Oh, do I ever, but I just want to cry.  Why does it have to be so hard?  Why him?  Why?
 

Stop Licking Your Flip Flops!

As parents, we inevitably hear ourselves say things that we never thought we'd say.  As parents of kids with autism, this can reach a whole new bizarre level of crazy utterances, that we don't say just once, but probably hundreds of times a day.

A fly on the wall at our house would hear things like, "Get your fingers out of your _______!!!"  You can insert literally ANY word in the blank.  The most commonly used line:  "Where are your PANTS?"  Two seconds later:  "WHERE ARE YOUR PANTS?  GET YOUR FINGERS OUT OF YOUR...!!!

I almost choked on the words, but I'll admit I've actually said, "Stop licking the walls!"  This is the worst part.  We were in the bathroom at Walmart. 

"Stop licking the windows.  Stop licking the dirt off your feet.  Stop licking the tops of ALL the cookies.  Stop licking me.  Stop pinching me.  Stop pinching the dog.  Stop, stop, stop, STOP!"

In comparing notes with other ASD moms about things we say that no one would probably believe, my favorites are:  "Stop licking your flip flops!  Get your tongue out of the dogs nose."  And last, but not least, "Stop licking the BEES!"

These kids keep us on our toes and always thinking outside and every which way around the box! 

The Between

Unlike when Brendon was first diagnosed, I now know there are a million hurdles and milestones between "non verbal" and "verbal."  I used to literally dream that he spoke a word and would wake up so excited! 

Eventually, he actually began to repeat a few words.  Now, I hear him practicing lines from movies and singing songs with his iPad.  He can speak words now, but can't answer yes or no, most of the time, to a simple question. 

I'm still dreaming of the day he can speak to me.  The day he can tell me what hurts or why he's crying.  Tell me what he likes and why he likes it.  I'm still dreaming!

Mommy

I was called, "Mommy" today.  It was unprompted, very clearly, and because he wanted something.  This is the first time, in five and a half years, I can ever remember him saying the word mommy.My heart feels like it has wings!
Oh, and he said it like six times while he took my hand and led me to where the plug had come out of the outlet.